Category Archives: Developmental Disabilities

Teaching Children and Adults with Rare Diseases

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February 29th is the official day of bringing awareness to rare diseases. According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Facts You Should Know About Rare Diseases

  • There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world
  • Each rare disease may only affect a handful of people but taken together directly affected is equivalent to the population of the world’s third largest country.
  • rare diseases currently affect 3.5%-5.9% of the worldwide population.
  • 72% of rare diseases are genetic while others are the result of infections.(bacterial or viral).
  • 70% of those genetic diseases start in childhood
  • About 30 million people or 1 in 10 people in the United States are affected by a rare disease
  • 95% of rare diseases do not have FDA-approval treatment.

Most children diagnosed with rare diseases are more than likely to also exhibit some form of learning disabilities including intellectual disabilities, developmental delays, speech and motor issues. Also, you may find in addition to an intellectual disabilities, students may also have medical issues including epilepsy and ongoing medical concerns.

While it is impossible to know and remember all of the signs and symptoms of rare diseases, the key is to teaching students based on their level of development. The following are useful teaching strategies when teaching students diagnosed with a rare disease:

  1. Teaching should include using multisensory teaching strategies by engaging students on multiple levels by encouraging students to use their senses. This is done by utilizing learning that includes visual (text, pictures, flash cards), auditory (music, songs),tactile (textured items, clay), kinesthetic (games, movement activities), taste ( cooking activities).
  2. Use concrete items and give examples
  3. Use hands on material as much as possible
  4. Break longer, new task into smaller task. Use task analysis.
  5. In some instances, children may have tactile and sensory issues.Signs include over and under reacting to pain, avoiding messy textures, picky eaters, and reacting to loud and sudden noises. Strategies include using a sensory diet and create activities using play doh or silly putty.

The following are articles and links to further information on rare diseases found in this blog:

Aicardi Syndrome– A rare genetic disorder that occurs in 1 in 105,000 to 167,000 newborns in the United states and occurs exclusively in females. People with Aicardi Syndrome often have undeveloped tissue which connects the left and right halves of the brain.

Angelman Syndrome– A genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities and speech impairments.

Chromosome 22q11.2 (DiGeorge Syndrome)- a rare disorder that is caused by deletion in chromosome 22 located specifically in the middle of the chromosome in the area. It affects 1 out of 4,000 births. Symptoms include developmental delays, poor muscle tone, learning development and feeding issues.

Cri Du Chat– A rare genetic disorder that results when a piece of the 5p Chromosome is deleted. Characteristics include intellectual disability, hyperactivity, and developmental delay.

Dravet Syndrome– A rare form of epilepsy found in children. Symptoms include developmental delays, sleeping conditions, and chronic infections.

Duchenne Muscular– Occurs in 1 out of 3,600 male infants and is characterized by progressive muscle degeneration. early signs include muscle weakness in the hips, pelvic area, thighs and shoulder affecting delayed motor skills, sitting and walking.

Landau Kleffner– Characterized by the gradual or sudden loss of language in children between the ages of 5 and 7.

Lowe Syndrome– Is a rare genetic disorder that affects the eyes, brain and kidneys. It has a prevalence of 1 in 500,000 and mainly affects males.

Prader Willi– A genetic disorder resulting from an abnormality of chromosome 15. It is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

Rett Syndrome– A neurodevelopmental disorder occurring mostly in females in which the child exhibits reduce muscle tone, and autistic-like behaviors including hand movements consisting of wringing and waving. It is a rare disorder that affects about 1 out of 10,000 children.

Williams Syndrome– A rare disorder with a prevalence of 1 in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Signs and symptoms include moderate intellectual disabilities and learning disabilities.

Updated 2/27/24. 

What is an ISP?

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People with disabilities that are eligible for community habilitation, day habilitation, supportive employment and support services will receive an Individual Service Plan (ISP).
What is an ISP?

An Individual Support Plan (ISP) is an ongoing process of establishing goals for individuals and identifies supports and strategies that reflect the person’s strength and abilities and details all of the services and supports needed in order to keep the person in their community. The ISP should reflect an opportunity for the person to live in the least restrictive home setting and to have the opportunity to engage in activities and styles of living which encourage and maintain the integration of the individual in the community through individualized social and physical environments.

Who should be included in the development of the ISP?
  • The person receiving services.
  • family members, caregiver, or designated representative
The ISP Planning Process

The ISP should be developed with participation from the following people:

  • The individual
  • Members of the individual’s family
  • A guardian, if any
  • The individual’s Service Coordinator
When is an ISP meeting held?

The meeting is held when it is desired or needed. Some State require meetings every 6 months while others every 2 years, so check with your state regulations.

What is discussed at ISP meetings?

The meeting should focus on 5 areas:

  • Review and gathering information including any new changes or discoveries. Has the person’s health status changed?
  • The person’s goals and desires
  • Review or identify personal value outcomes.
  • Recent events that may affect the person’s health, safety and goals
  • Review and develop next-step strategies and resources
What must the ISP include?

The ISP should include:

  • Specific goals
  • The supports the individual needs to reach those goals without regard to the availability of those goals.
  • Who is responsible for providing those supports.
  • How often and how much support are needed.
  • The criteria foe evaluating the effectiveness of the supports.
  • Team members responsibilities for monitoring the ISP implementation.
  • The date of the next ISP review.

Updated 2/22/24.

Angleman Syndrome and Adulthood

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Angelman syndrome is a genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities, epilepsy, short attention span, hyperactivity, hand flapping and speech impairments. It is a rare disorder that affects 1 in 12,000 to 20,000 a year. there are less than 200,000 cases a year and affects all ethnicities and sexes equally.

Typically, there is a severe developmental delay and learning disability as well as near absence of speech and ataxia including ataxia including jerky movements of the arms and legs. People with Angelman syndrome generally have a happy demeanor and an inappropriate laughter.

Life expectancy appears to be normal. As people with Angelman syndrome age, scoliosis tends to worsen and for many people born with epilepsy, there are cases where seizures stop, however, they tend to return as the person gets older.

 

Health Issues in Adults

Several research studies show a number of health complications for adults with Angelman syndrome. Less than half of people with Angelman syndrome also have a diagnosis of seizures. Seizures begin in early childhood and can continue through adulthood. Poor sleep in adults continue to be a challenge. This includes difficulty falling asleep, frequent waking up during the night and waking up too early. Other issues include, constipation, scoliosis, self-injurious behavior and obesity.

Due to cognitive and medical needs, a person with Angelman syndrome will always require support. Most people with Angelman syndrome attend a day habilitation setting. Support should include

  • staff trained on identifying seizures and providing assistance.
  • programs that support the person’s short attention span
  • evaluation for a communication device or a means to communicate.
  • support for self-injurious behavior.

Updated 2/15/24.

What is Turner Syndrome?

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February is Turner Syndrome Awareness Month. It is a rare disease that occurs in between one and 2,000 birth only affecting females. Turner Syndrome has several names including Ullrich-Turner Syndrome, Bonnevie-Ullrich-Turner Syndrome. gonadal dysgenesis and 45X. This rare disease is the result of the absence of one set of genes from the short arm of one X chromosome.

Special Needs Challenges

While girls and women with Turner Syndrome usually have normal intelligence, there is a risk of learning disabilities involving spatial concepts including math and memory and ADHD

Teaching Strategies:

Young girls diagnosed with Turner Syndrome during their early development may have delays in learning the alphabet, speech, difficulty in following one command at a time and conceptual difficulties such as up and down. Signs and symptoms of math or dyscalculia challenges include difficulty with counting money, estimating time, losing track when counting and remembering phone numbers or zip codes. The following strategies should be used when teaching students diagnosed with Turner Syndrome:

  • Use flashcards to aid in memory as well as workbooks, games and video’s.
  • Break learning into smaller steps by using a task analysis framework.
  • Administer probing and feedback as a check in
  • Model instructional practices
  • Provide prompts
  • Use visuals such as diagrams, graphics and pictures.
  • Give clear directions
  • Use multiple models including visual and auditory learning models
  • Make sure directions are clear
  • Allow time to process and take notes

Updated 2/3/2024

Trisomy Syndrome Facts and Statistics

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Trisomy 21 (Down Syndrome)
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
  • Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
  • Down syndrome occurs in people of all races and economic levels
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses

The incidence of Down syndrome is between I in 1000 to 1 in 1,100 live birth worldwide.

  • Each year, approximately 3,000 to 5,000 children are born with Down syndrome.
  • 60-80% of children with Down syndrome having hearing issues
  • 40-45% of children with Down syndrome have congenital heart disease

 

Trisomy 18 (Edwards Syndrome)
  • It is also known as Edwards Syndrome
  • It is a condition caused by an error in cell division
  • An extra chromosome in 18 develops
  • Occurs in 1 out of every 2500 pregnancies in the United States
  • It is 1 in 6000 live births
  • Only 50% of babies who are carried to term will be born alive
  • Children are often born with heart defects
  • Features include a small head, small jaw, clenched fists and severe intellectual disabilities
  • It is named after John Hilton Edwards, who first described the syndrome in 1960
  • It affects different organ systems
Trisomy 13 (Patau Syndrome)
  • Trisomy 13 is the presence of an extra chromosome 13 in all cells
  • Mosaic trisomy 13- the presence of an extra chromosome in some of the cells
  • Partial trisomy 13- the presence of a part of extra chromosome 13 in the cells
  • Occurs in about 1 out of every 5,000 to 16,000 newborns
  • The brain is mostly affected
  • Most children tend to have a heart defect
  • Was first described in 1657
  • 44% of babies born die within the first month of birth
  • In the first month of birth, 69% die by 6 months
  • Only 18% reach their first birthday
  • It is not inherited
  • Are usually born with an intellectual disability.

Ring Chromosome 22

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According to the March of Dimes, about 1 in 150 babies are born with a chromosomal condition. Changes of the chromosome can occur through duplication, deletion or inversion.

Ring Chromosome 22 is a rare disorder which occurs when a component of the short arm and a part of the long arm are missing which join together causing to form a ring.

Prevalence

Ring Chromosome is extremely rare. There are approximately 100 known case.

Signs and Symptoms
Signs and symptoms vary based on the amount of genetic material lost and the location of the break in the chromosome. Signs and symptoms typically include, developmental delays, intellectual disabilities in the severe to moderate range, speech delay, hypotonia, unsteady gait, seizures and hyperactivity. Physical characteristics in some cases include webbed toes and a bulbous nose.
Ring Chromosome 22 and Autism

It is estimated that 30-79% of people diagnosed with Ring Chromosome 22 also displayed autistic features. In cases where Autism and Ring Chromosome 22 coexisted, it was found that autism symptoms such as mood disorders, hyperactivity, and aggression were evidenced.

Treatment

There is currently no cure for Ring Chromosome 22. The following are used as a way to manage the disorder.

  • special education
  • speech therapy
  • physical therapy
  • seizure medication.
Resources
  1. Genetics Home Reference
  2. Wikipedia

Pervasive Developmental Disorder- Not Otherwise Specified

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According to the 5th edition of the Diagnostic and Statistical manual of Mental Disorders (DSM-5), Autism Spectrum Disorders is based on social communication impairments and restricted, repetitive patterns of behavior with varying levels of severity based on levels of support.

There are four sub types of Autism Spectrum Disorder including:

  1. Asperger’s Syndrome
  2. Autistic Disorder
  3. Childhood Disintegrative Disorder
  4. Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)

What is Pervasive Developmental Disorder- NOS?

PPD-NOS historically was a term used as a catch- all under the diagnosis of the autism spectrum disorder. It was used as a diagnosis for children who displayed some symptoms of autism, but did not meet the full criteria for the disorder. In order to meet the criteria, a child must have persistent deficits in the areas of social communication and interaction and at least 2 of the 4 types of restricted behavior.

People diagnosed with PDD-NOS tend to display a milder form of the autism disorder while this is not always the case. In some instances, some characteristics may be mild, but severe in other areas.

Prevalence 

The prevalence for PDD-NOS is 60-70 per 10,000 and it is considered one of the most frequent childhood neurodevelopmental disorders.

Research Studies

Very little research has been done specifically on PDD-NOS over the years. Some studies discovered that children diagnosed with PPD-NOS were more likely than other ASD diagnosis to no longer show ASD symptoms as they grew older. In one study, it was found that 39% of the sample of children no longer met the criterial for ASD. In another study, it was found that of the 97 children with a PDD-NOS, 25.8% had some degree of an intellectual disability and 9.3% had an associated medical condition such as Fragile X Syndrome disorder or a hearing/visual impairment.

Signs and Symptoms

For individuals diagnosed with PDD-NOS, it is not uncommon to see a higher level of social skills. characteristics may include:

  • Challenges with social behavior
  • Uneven skills development such as high level social skills and delays in play.
  • repetitive body movement
  • Communication challenge such as recognizing facial expressions and emotions and lack of understanding figural of speech and idioms.
  • Maladaptive daydreaming and fantasies
Diagnosis

Assessments

Treatment

While there is no known “cure” to treat PDD-NOS, individuals can benefit from:

  • Social stories
  • Occupational therapy
  • Physical therapy
  • Speech therapy
  • Medication to treat anxiety and depression
The following links describe in more detail specific characteristics of a person with PDD-NOS:
My ASD Child
National Autism Resources
WebMD.Com
Wikipedia

4 Ways to Utilize Rare Disease Foundation Websites as Educators

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According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Although rare, special education teachers and habilitation specialist are more than likely to have a student or an individual diagnosed with a rare disease disorder. In most cases the person is also likely to have an intellectual developmental disorder, which qualified the student to have an iep or an adult attending a day program to qualify for a Medicaid Waiver.

The foundation website’s provide information that can help you understand the rare disease and the impact it has on the student. Further information provides current research on the disorder as well.

The websites can help you in the following ways:

  1. Provides detailed diagnosis information including clinical features, characteristics, and frequently asked questions.
  2. Facebook groups are available where you can join a group to ask questions and share stories.
  3. Printed material included factsheets, booklets, newsletters and ebooks.
  4. Educational information includes webinars, video’s conferences and seminars.

 

The following are links to rare disease website:

Aicardi Syndrome Foundation– Incorporated in 1991, the foundation is dedicated to provided assistance to those affected and their families.

Angleman Syndrome Foundation- Commitment to research to discover Angelman Syndrome treatment and a cure and supporting families.

CDKL5 Deficiency Disorder(International Foundation for CDKL5 Research)- Committed to funding research, both scientific and clinical, raising awareness. Also provides support to newly diagnosed through adulthood..

Cerebral Palsy Foundation– Collaborates with researchers to better understand the disorder. The website offers information through factsheets and a video library.

Chromosome 22 Ring- (Chromosome 22 Central)- Includes information and support for all Chromosome 22 disorders including research, support and events.

Chromosome 22q11.2 Deletion- (The International 22q11.2 Foundation) Provides resources and connections to experts regarding medical, psychosocial and educational needs. The foundation also organizes awareness events, educational conferences and supports legislative advocacy.

Cornelia de Lange Syndrome Foundation– Provides a host of services including information to families, professionals, and researchers.

Dravet Syndrome– A non-profit organization dedicated to raising funds for Dravet Syndrome. Also provides educational videos and webinars on website.

Duchenne Muscular Dystrophy-(Cure Duchenne)– The mission is to improve the lives of everyone affected by Duchenne through accelerating researchers to find the cure, improve care and empowering the Duchenne community.

Fragile X Syndrome Foundation- Serves all those living with Fragile X syndrome with a focus on community, awareness, and research in the pursuit of treatment and a cure. The website includes information on Fragile X and the relationship with Autism. The website also provides a free e-book on adults with Fragile X Syndrome.

Hydrocephalus Association- Provides resources to families, communities, professionals and researchers. Sponsors a yearly educational days and advocacy.

Kabuki Syndrome- The mission is to drive research efforts that show promise to treat, prevent or cure Kabuki syndrome through fundraising, knowledge-sharing and collaboration with researchers

Lowe Syndrome Association– The mission is to improve the lives of persons with Lowe syndrome and their families through fostering communication, providing education and supporting research.

Prader Willi Syndrome Association– The mission is to enhance the quality of life and empower of those affected by Prader-Willi Syndrome. The website includes educational resources such as webinars and a resource library.

Rett Syndrome Organization– The mission is to empower families with information, knowledge and advocacy and to raise awareness.

Sickle Cell Disease Association of America– The mission is to advocate for people affected by sickle cell conditions and empower community-based organization to maximize quality of life and raise public consciousness while searching for a cure.

Trisomy 18 Foundation- Provides information and educational resources to families, medical professionals and the general public.

Turner Syndrome Foundation- Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care.

Williams Syndrome Association– Founded by families of individuals with Williams syndrome to provide resources to doctors, researchers, and educators

Teaching Students with Feeding Tubes: What You Need To Know

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If you work in a special education class or a day habilitation setting, more than likely you are teaching a student or an individual with complex needs including the use of a feeding tube.

February 8-12 is recognized as Feeding Tube Awareness Month which is a great opportunity to provide information on tube feeding in an educational setting.  According to the Tube Feeding Awareness Foundation, there are over 300 conditions that require students and individuals to receive nutritional support through tube feeding.

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent .

Reasons to use a feeding tube
The student or individual may have a swallowing disorder or dysphasia. This means there is an increase risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.
Types of Feeding Tubes

Gatro Feeding Tube

The gastrostomy tube (G tube) is placed through the skin into the stomach. The stomach and the skin usually heal in 5-7 days. This type of tube is generally used in people with developmental disabilities for long term feeding.

Nasogastric Feeding Tube

The nasogastric (NG tube)  is inserted through the nose, into the swallowing tube and into the stomach. The NG tube is typically used in the hospital to drain fluid from the stomach for short term tube feeding.

Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

The following are articles on IEP and Accommodations:

IEP/Accommodations

Going to school with a feeding tube- http://www.tubefed.com

Accommodations and supports for children with pediatric feeding disorders- Kids First Collaborative

School-based accommodations and supports– Feeding Matters

Tube feeding at school: 8 tips to prepare your child and school staff– Shield Healthcare

Signs and Symptoms of Issues related to a g-tube

Complications due to tube feeding may include:

  • constipation
  • dehydration
  • diarrhea
  • infections
  • nausea/vomiting

Aspiration

Aspiration can be caused by:

  • reflux of stomach contents up into the throat
  • weak cough, or gag reflux
  • the feeding tube is not in place
  • delayed stomach emptying
  • The head is not raised properly.

Students should be observed for aspiration during feeding. The following are signs and symptoms of aspiration:

  1. Choking or coughing while feeding
  2. Stopping breathing while feeding
  3. Faster breathing while feeding
  4. Increased blood pressure, heart rate and decreased oxygen saturation.

The following are articles on signs and symptoms of aspiration during feeding

Aspiration in Children

How to Prevent Aspiration

Life with Aspiration and a Feeding Tube

Pediatric Aspiration Syndromes

Tube Feeding Aspiration

Resources

Book Review: My Belly Has Two Buttons: A Tubie Story

Tube Feeding Awareness Foundation

Signs of Autism Spectrum Disorder in Children with Down Syndrome

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Signs and symptoms of Down syndrome is fairly easy to detect especially since there are specific physical characteristics of the disorder. But what if there is also a diagnosis of autism?

Studies show that 5 to 39% of children with Down syndrome are also on the autism spectrum. There are overlaps in some of the symptoms which delays the signs and symptoms of autism. This observation is slowly growing and informing parents and educators  to observe for specific signs and symptoms.

It is possible that educators and therapist may be the first to notice that children with Down syndrome also display characteristics that are similar to autism.

Why is it important?

According to authors Margaret Froehlke and Robin Zaborek from the book, When Down Syndrome and Autism Intersect, The education approach in both Down syndrome and autism will be different than for children with a single diagnosis of Down syndrome including accommodations and writing the IEP. Teaching strategies will also differ. Teaching a student with Down syndrome who require tactile demonstrations, simple directions, and immediate feedback will now require concrete language, social stories, the use of few choices and the use of concrete language.

The importance of getting the diagnosis
Most often children with Down syndrome are treated for the characteristics of having Down syndrome which overlooks giving children the appropriate treatment for Autism such as social skills and sensory issues. A child or young adult with both diagnosis will likely experience aggressive behaviors, meltdowns, and show signs of regression during their early development. The following are signs and symptoms to look for in your child, or student:
  • Hand flapping
  • Picky eater
  • Echolalia
  • Fascination with lights
  • Staring at ceiling fans
  • History of regression
  • Head banging
  • Strange vocalization
  • Anxiety
  • Seizure Disorder

Signs of overlap include:

As the student gets older, there may be ongoing issues with sensory disorders and transitions leading to meltdowns

Additional Resources:

Autism and Meltdown Resources

Printable Down Syndrome Fact Sheet

 

Reference

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for
Parents and Professionals
By Margaret Froehlke, R. N. & Robin Zaborek, Woodbine House, 218 pp.

Updated 1/12/2021

2021 Special Needs Awareness Observance Calendar

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Download printable here: 2021 Special Needs Awareness Observance Calendar
Did you know that 1 in 6 or 15% of  children aged 3 through 17 have one or more developmental disabilities? Or that according to the World Health Organization (WHO) that over a billion people live with some form of disability? This means that nearly 1 in 7 people on Earth have some form of a disability. For this reason, disability awareness and acceptance is more important now than ever before.

What is the Purpose of Disability Awareness?

Disability awareness serves many purposes including informing and educating people on a certain cause.  In some cases organizations and agencies use it as part of their annual campaign in an effort to bring awareness and raise money for their cause. Employers often conduct trainings on disability awareness as an effort to educate employees and to decrease bullying in the workplace. Disability awareness also can be used to address myths, misconceptions and the realities of having a disability.  Ribbons are also used that are specific to awareness activities. Through disability awareness campaigns it is hoped that people learn and develop a greater understanding of those with a disability. Annual awareness observances are sponsored by federal, health and non-profit organizations. In some cases observances are worldwide including World Autism Awareness Day or World Cerebral Palsy Day.

Types of Awareness Campaigns

Awareness campaigns fall under three categories:

  • Day- this is often held on the same day each year regardless of the day it falls under. There are cases where an awareness day falls on a specific day such as the last Thursday of a month.
  • Week – The dates dates change and vary based on the week. In some cases, awareness activities are held on the first week of the month to the fourth week of the month
  • Month- activities and awareness celebrations are held throughout the month.
The 2021 calendar includes major special needs awareness days, weeks, and months. Most websites include awareness toolkits, promotional material and fact sheets. This page focuses on awareness activities that impact people with intellectual and developmental disabilities. Click on the month below to go to a specific month.
January /February/March/ April/ May/June/July/September/October/November/December

January     

Louis Braille

                                             

January (Month)

National Birth  Defects Month

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

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February

February (Month)

Turner Syndrome Awareness Month

February (Week)

February 7-14 Congenital Heart Defect Awareness Week

February 8-12 Feeding Tube Awareness

February (Day)

February 15- International Angelman Day

February 28- Rare Disease Day

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March

March (Month)

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March (Week)

March 21-27- Poison Prevention Week

March (Day)

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

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April

April (Day)

April 2- World Autism Awareness Day 

April 7- Paraprofessional Appreciation Day

May

Better Hearing and Speech Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

National Osteoporosis Awareness and Prevention Month

National Mobility Awareness Month

Prader Willi Syndrome Awareness Month

Williams Syndrome Awareness Month

May (Week)

May 5-12- Cri du Chat Awareness Week

May (Day)

May 1- Global Developmental Delay Day

May 5- World Asthma Day

May 14- Apraxia Awareness Day

May 19- National Schizencephaly Awareness Day

May 15- Tuberous Sclerosis Global Awareness Day

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June

June (Month)

Aphasia Awareness Month

Tourette Syndrome Awareness Month

June (Week)

Helen Keller Deaf-Blind Awareness Week (Last Sunday in June)

June (Day)

June 7- Tourette Syndrome Awareness Day

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

 

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July

July (Month)

National Cleft and Craniofacial Awareness and Prevention Month

National Fragile X Syndrome Awareness Month

July (Day)

July 18- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disability Act Day

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September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Cortical Visual Impairment (CVI) Awareness Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

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October

ADHD Awareness Month

Disability History Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October (Day)

October 6- World Cerebral Palsy Day

October 15- White Cane Awareness Day

October (Week)

October 13-19 Invisible Disabilities Week

Rett Syndrome Awareness Month

Spinal Bifida Awareness Month

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November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

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December

December 3- International Day of Persons with Disabilities

December 1-7- Infantile Spasm

Updated 1/5/2021

What is 22q11.2 Deletion Syndrome?

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22q11.2 deletion syndrome, is a rare disorder that is caused by a deletion in chromosome 22 located specifically in the middle of the chromosome in the area referred to as 22q11.2. This syndromes affects 1 out of 4000 people and signs and symptoms include, developmental delays, poor muscle tone, learning development, feeding issues and hearing loss.

Similar Names

  • Cayer Cardiofacial Syndrome
  • Conotruncal Anomaly Face Syndrome(CTAF)
  • DiGeorge Syndrome (DGS)
  • Microdeletion 22q11.2
  • Monosomy 22q.11
  • Opitz G/BBB Syndrome
  • Sedlackova Syndrome
  • Shprintzen Syndrome
  • Takao Syndrome
  • Velo-Cardio-Facial Syndrome (VCFS)

History

  • 1955- First appear in medical literature by Dr. Eva Sedlackova who described a number of cases of children with hypernasal speech and reduced facial animations.
  • 1965- Dr. Angelo DiGeorge described congenital absence of the thymus gland in 4 patients.
  • 1968- Dr William Strong reported an association of cardiac abnormalities.
  • 1981- Dr. Shimizu of Japan noticed similarities between patients diagnosed with CTAF and DiGeorge Syndrome
  • 1982- Dr’s Richard Kelley, Elaine Zacker and Beverly Emanuel at the Children’s Hospital in Philadelphia discovered that some patients had a rearrangement of chromosome 22 thus causing a piece of the long arm (q11.2) to be missing

Associated Conditions

  • cardiac anomalies
  • cleft palate
  • kidney abnormalities
  • language delays
  • learning challenges
  • developmental delays
  • feeding disorders
  • autism
  • ADHD
Learning Challenges Include:
  • Poor Working and short term memory
  • Difficulty with math reasoning
  • Difficulty with reading comprehension
  • Fine motor and perceptional skills

Instructional Teaching Strategies:

Attention Skills Strategies

Spring Fine Motor Activities

Updated 1/7/2021

 

 

What is Cri Du Chat Syndrome?

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Cri-Du Chat, French for cry of the cat is a rare genetic disorder that occurs when there is a total or short deletion in the short arm of Chromosome 5. This portion of the chromosome is responsible for intellectual disability while the region of 5p15.3 is associated with speech delays and the high-pitched cat cry.  The high pitch cry is similar to the sound of a cat mewing which generally disappears after a few months or years in some cases. It is believed this is due to laryngeal alterations.

Although cri du chat is a rare syndrome, it is considered one of the most common syndromes in children and adults. There is an incidence of 1 in 50,000 live births and affects all ethnic and racial backgrounds.

Signs and Symptoms

Physical signs and symptoms include:

  • microcephaly
  • large nasal bridge
  • down-turned corners of the month
  • low-set ears

Other signs and symptoms include:

  • Intellectual disability
  • Hypertonia
  • Global and developmental delays
  • Speech and communication delays
  • Behavior challenges
  • Hypersensitivity.

Early Development

Studies show that in early development, during the first two years, children display issues with dysphasia, muscle hypotonia, and gastroesophageal and nasal reflux. Other early issues include recurrent respiratory infections and psychomotor issues.

Intellectual Disability

An intellectual disability is defined by the ICD-9 as a disorder with onset during the development period including both intellectual and adaptive functioning deficits. People with cri du chat typically fall under the moderate and severe range requiring personal care involving eating, dressing, and hygiene as well as self-care and monitored for self-injury.

Behavior Challenges

Behavior challenges among children and adults with cri du chat include aggressive and self-injurious behavior as well as hyperactivity. A study conducted by Cornish and Pigram (1996) found that there was one characteristics that occurred in more than 75% of the group and none characteristics that occurred in more than 50% of the group including hypersensitivity, to sensory stimuli, self0injurious behavior, repetitive movements, stubbornness and object attachment.

Health sites and  that provide information on Cri Du Chat including symptoms, diagnoses, definition and prevalence.

  1. National Institute of Health
  2. Wikipedia
  3. National Human Genome Research Institute
  4. Learn Genetics
  5. Medscape.com

Organizations

  1. International Cri Du Chat
  2. Five P Minus Society

Updated 1/6/2021

What you should know about severe autism

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Media is slowly getting better in it’s portrayal of people with autism in both movies and television, while many still hold onto to the perception of “Rain Man”, I do believe we are moving in the right direction. Still, little is discussed or talked about when it comes to children and adults with severe autism. Some may refer to severe autism as “low functioning when in fact autism is a spectrum in both symptoms and behaviors and varies from person to person.

Children and adults with severe autism often display the following signs :

  • Impaired social interaction
  • Difficulty in communicating- both expressive and receptive
  • Obsessive compulsive disorder
  • anxiety
  • aggressiveness
  • self-injurious

According to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are 3 levels of severity based on social communication impairments, restricted, and patterns of behaviors. The severity level (Level 3) is defined as requiring very substantial support. For example the person may exhibit very limited initiation of social interaction and extreme difficulty with coping and change. signs may include an indifference in others, using negative behavior to communicate, very little or echolalia, sensory sensitivity will vary from severe to none, may be self-injurious and have an intellectual disability.  Below you will find articles on understanding severe nonverbal autism:

5 nonverbal children that found their voices

Autism: How do you communicate with a non-verbal child

Helping nonverbal kids to communicate

I have nonverbal autism…Here is what I want you to know

Nonverbal autism: Symptoms and treatment activities

Missing brain wave may explain language problems in nonverbal autism

Overview of nonverbal autism

What can we learn from studying severe autism?

What makes severe autism so challenging?

Why being nonverbal doesn’t mean being non-capable

Why children with severe autism are overlooked?

Updated 8/23/2020

Accommodations for Students with Dysgraphia

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Dysgraphia is describes as a learning disability that affects writing, spelling and fine motor skills. Dysgraphia is a neurodevelopmental disorder that can occur as a stand alone disorder or part of a co-occurring disorder with other disabilities such as ADHD, Autism, and Dyslexia. Typically it is diagnosed or discovered in the early years when children are beginning to learn how to write. Most adults often remain undiagnosed.

Early Signs of Dysgraphia

Signs and symptoms of dysgraphia generally begin to show up when children began to lean how to write. Early signs of Dysgraphia include:

  • Inconsistent spacing between letters
  • Poor spatial planning
  • Poor spelling
  • Unable to read own handwriting
  • Poor fine motor skills
  • Omitted words
  • Writes slow
  • Pain in hand from writing
  • Messy unorganized papers
  • Difficulty organizing thoughts on paper
  • Illegible printing and cursive letter formation
  • Slopping handwriting
  • Tight, cramped pencil grip
  • Tires quickly when writing
  • mixes upper and lower case or irregular sizes and shapes of letters.

The following articles provide resources on accommodations:

6 tips for creating a dysgraphia-friendly classroom

A guide to classroom and at-home accommodations for dysgraphia

Classroom accommodations for students with dysgraphia

Dysgraphia Accommodations

Dysgraphia accommodations and modifications

Dysgraphia accommodations in the classroom

Dysgraphia accommodations that improve learning

Dysgraphia symptoms, accommodations, and IEP goals

How to assist a student with dysgraphia in the classroom

Possible accommodations to consider for children with dysgraphia

What To Do When Someone Has A Seizure

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Over a lifetime, 1 in 26 people will be diagnosed with epilepsy. More than 30% of people with epilepsy will experience generalized seizures. When providing first aid for seizures, try to keep calm and make sure the person having the seizure is comfortable and safe from harm.

Call 911 if:

  • The person has never had a seizure before.
  • the person has difficulty breathing or waking after the seizure.
  • The seizure lasts longer than 5 minutes.
  • The person has a seizure back- to- back.
  • The person is injured during the seizure.
  • The person has an additional condition like diabetes, or heart disease.
  • Ease the person to the floor.
  • Turn the person gently onto the side (this will help the person breathe).
  • Clear the area around the person of anything hard or sharp
  • Put something soft and flat, like a folded jacket, under his or her head.
  • Loosen ties or anything around the neck including button on a shirt.
  • Time the seizure.

Do Not:

  • Do not hold the person down or try to stop his or her movements.
  • Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
  • Do not try to give mouth-to-mouth breaths (CPR). People usually start breathing again on their own after a seizure.
  • Do not offer the person water or food until he or she is fully alert.

After the seizure:

After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.

Don’t try to stop the person from wandering unless he or she is in danger.

Don’t shake the person or shout.

Stay with the person until he or she is completely alert.

Source: Centers for Disease Control and Prevention

Source: National Institute of Neurological Disorders and Stroke

Down Syndrome and Sleep Apnea

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Obstructive Sleep Apnea Syndrome (OSAS) is considered one of the conditions affecting 2% to 4% of adults with Down syndrome and as they get older, the prevalence increases to 37% of men and 50% of women.

What is Obstructive Sleep Apnea?

It is a common disorder due to repetitive episodes of different breathing while sleeping due to upper airway collapse. The obstruction occurs when the muscles in the back of the throat fails to keep the airway open.

Signs and Symptoms

Signs of obstructive sleep apnea in individuals with Down syndrome include:

  • Snoring
  • Gasping
  • Excessive daytime sleeping
  • Daytime mouth breathing

According the Down Syndrome Association, the following techniques will help with sleeping during the night:

  • a nightly routine at bedtime
  • a bedroom that is free of distractions (e.g. cut out any unwanted light or noise)
  • regular sleeping hours
  • regular exercise and activities
  • avoidance of caffeine and other stimulants in the evening
  • avoidance of exercise in the evening.
Resources

Obstructive Sleep Apnea and Down Syndrome– NDSS

Obstructive sleep apnea in children with Down syndrome– Children’s Hospital Boston

Obstructive sleep apnea in children with Down syndrome– Massachusetts General Hospital

Obstruction sleep apnea in patients with Down syndrome: Current perspectives- NCBI

Sleep apnea confirmed common in children with Down syndrome– Cincinnati Children’s

 

Fact Sheet: Learning Disabilities

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Dowwnload Here: learning disabilities

What is Augmentative and Alternative Communication (AAC)?

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According to the American Speech Language Hearing Association, there are over 2 million people with significant expressive language impairment who use AAC. AAC users including people with the following disorders; autism, cerebral palsy, dual sensory impairments, genetic syndromes, intellectual disability, multiple disabilities, hearing impairment, disease, stroke, and head injury.

According to the International Society for Augmentative and Alternative Communication Organization. AAC is a set of tools and strategies that an individual uses to solve everyday communicative challenges. Communication can take many forms such as: speech, a shared glance, text, gestures, facial expressions, touch, sign language, symbols, pictures, speech-generating devices, etc. Everyone uses multiple forms of communication, based upon the context and our communication partner. Effective communication occurs when the intent and meaning of one individual is understood by another person. The form is less important than the successful understanding of the message.

The types of AAC includes both low-tech and high tech. Low tech AAC includes symbol charts, PECS,  and communication boards, while high tech AAC include electronic devices such computers, tablets and devices.

The following information provides resources, articles and tips on using AAC:

3 sets of AAC goals for interactive books

5 quick and easy games that build AAC skills

50 simple switch or low tech activities

AAC and Echolalia

AAC for caregivers manual

AAC Quiz

Augmentative and alternative communication (AAC) systems for students with CVI and multiple disabilities 

How to make an AAC symbol library

Language opportunities to use AAC at home

Low-Tech AAC Ideas

Promoting inclusion and participation for people who use AAC

Reducing prompt dependence in AAC learners: 5 things to try

The periodic table of AAC

Using AAC more in the classroom

Using LIST in PODD communication books

What does it take to implement AAC

 

What is Executive Function Disorder?

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What is Executive Functioning?

According to CHADD org, Executive function skills refers to brain functions that activate, organize, integrate and manage other functions which enables individuals to account for short- and long term consequences of their actions and to plan for those results.

According to Rebecca Branstetter, author of The Everything Parent’s Guide to Children with Executive Functioning Disorder, These skills are controlled by the area of the brain called the frontal lobe and include the following:

  • Task Initiation- stopping what you are doing and starting a new task
  • Response Inhibition- keeping yourself from acting impulsively in order to achieve a goal
  • Focus- directing your attention, keeping you focus, and managing distractions while you are working on a task
  • Time Management- understanding and feeling the passage of time, planning  good use of your time, and avoiding procrastination behavior.
  • Working Memory- holding information in your mind long enough to do something with it (remember it, process it, act on it)
  • Flexibility- being able to shift your ideas in changing conditions
  • Self-Regulations- be able to reflect on your actions and behaviors and make needed changes to reach a goal
  • Emotional Self-Control- managing your emotions and reflecting on your feelings in order to keep yourself from engaging in impulsive behaviors.
  • Task Completion- sustaining your levels of attention and energy to see a task to the end.
  • Organization- keeping track and taking care of your belongings (personal, school work) and maintaining order in your personal space.
What Causes Executive Functioning Disorder?
  • a diagnosis of attention deficit hyperactivity disorder (ADHD)
  • a diagnosis of obsessive-compulsive disorder (OCD)
  • a diagnosis of autism spectrum disorder
  • depression
  • anxiety
  • Tourette syndrome
  • Traumatic
Signs and Symptoms
  • Short-term memory such ask being asked to complete a task and forgetting almost immediately.
  • Impulsive
  • Difficulty processing new information
  • Difficulty solving problems
  • Difficulty in listening or paying attention
  • issues in starting, organizing, planning or completing task
  • Difficulty in multi-tasking

Issues with executive functioning often leads to a low self-esteem, moodiness, insecurities, avoiding difficult task. and low motivation

Managing Executive Functions Issues
  • Create visual aids
  • use apps for time management and productivity
  • Request written instructions
  • Create schedule and review at least twice a day
  • Create checklist

 

Teaching Strategies for Individuals with Multiple Disabilities

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Evidence based practices for students with severe disabilities 

Instructional strategies for students with multiple disabilities

Multiple disabilities in your classroom: 10 tips for teachers

Severe and education of individuals with multiple disabilities

Strategies for inclusion of children with multiple disabilities including deaf-blindness

Students who are blind or visually impaired with multiple disabilities

Students with multiple disabilities

Supporting young children with multiple disabilities: What do we know and what do we still need to learn?

Teaching students with multiple disabilities

Teaching students with severe or multiple disabilities

What is Sepsis?

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While Sepsis is a severe life-threatening medical condition, it can also affect people with disabilities. According to the Centers for Diseases and Control (CDC), Sepsis is the body’s extreme response to an infection. It is a life-threatening medical emergency. Sepsis happens when an infection you already have —in your skin, lungs, urinary tract, or somewhere else—triggers a chain reaction throughout your body. Without timely treatment, sepsis can rapidly lead to tissue damage, organ failure, and death. Sepsis kills more than 250,000 people a year with 1.5 million diagnosed each year.

Signs and Symptoms
  • An initial infection
  • Fever
  • High heart rate
  • heavy breathing

Severe sepsis occurs during organ failure. signs include:

  • decrease urination
  • breathing problems
  • body chills
  • extreme weakness

Sepsis is caused by:

  • Pneumonia
  • Kidney infection
  • Bloodstream infections.

if you work with an individual displaying any of these signs and symptoms, seek medical attention.

Resources

Recovering from Sepsis– NHS

Sepsis Overview– Science Direct

What is Sepsis?– Sepsis Alliance

University Centers on Disabilities Resources

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Are you familiar with the Association of University Centers on Disabilities? It is a program The Association of University Centers on Disabilities (AUCD) is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. Network members consist of:

  • 67 University Centers for Excellence in Developmental Disabilities (UCEDD), funded by the Office on Intellectual Developmental Disabilities (OIDD)
  • 52 Leadership Education in Neurodevelopmental Disabilities (LEND) Programs funded by the Maternal and Child Health Bureau (MCHB)
  • 14 Intellectual and Developmental Disability Research Centers (IDDRC), most of which are funded by the National Institute for Child Health and Development (NICHD)

These programs serve and are located in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change.

AUCD supports this national network through:

  • Leadership on major social problems affecting all people living with developmental or other disabilities or special health needs
  • Advocacy with Congress and executive branch agencies that fund and regulate programs used by people with disabilities
  • Networking and partnering with other national organizations to advance the network’s national agendas
  • Promoting communication within the network and with other groups by collecting, organizing, and disseminating data on network activities and accomplishments
  • Technical assistance provision on a broad range of topics

The following are Networks located in each State:

Alabama

The University of Alabama at Birmingham
933 19th Street South, CH19 Room 307(Location)
1720 2nd Avenue South, CH19 Room 307 (Mailing)
Birmingham, AL 35294-0021
Main Phone:  205-934-5471
Toll Free Number:  800-822-2472
Main Fax:  205-975-2380
Main Email:  fbiasini@uab.edu
Website:  www.uab.edu/civitansparks

Alaska

UCEDD,LEND Program:
Center for Human Development
University of Alaska Anchorage
2702 Gambell Street
Suite 103
Anchorage, AK 99503
Main Phone:  907-272-8270
Main Fax:  907-274-4802
Website:  http://www.alaskachd.org

Arizona

Arizona UCEDD
Northern Arizona University
Institute for Human Development
912 Riordan Ranch Road
PO Box 5630
Flagstaff, AZ 86011-5630
Main Phone:  928-523-7921
Main Fax:  928-523-9127
TTY:  928-523-1695
Website:  http://www.nau.edu/ihd/

Arkansas 

Partners for Inclusive Communities
University of Arkansas at Fayetteville
322 Main. Suite 501
Little Rock, AR 72201
Main Phone:  501-301-1100
Toll Free Number:  800-342-2923
Main Fax:  501-682-5423
TTY:  800-342-2923
Main Email:  partners@uark.edu
Website:  http://UofAPartners.uark.edu

California

UCEDD Program:
USC UCEDD at the Children’s Hospital Los Angeles
Children’s Hospital Los Angeles
University of Southern California
4650 Sunset Boulevard
Mailstop #53
Los Angeles, CA 90027-6062
Main Phone:  323-361-2300
Main Fax:  323-361-8305
Main Email:  uscucedd@chla.usc.edu
Website:  http://www.uscucedd.org
AUCD State Profile: AUCD CA State Profile

Colorado 

JFK Partners
University of Colorado Denver
School of Medicine
13121 E. 17th Ave, C234
Aurora, CO 80045
Main Phone:  303-724-5266
Main Fax:  303-724-7664
Website:  http://www.jfkpartners.org

Connecticut

UConn Center for Excellence in Developmental Disabilities
University of Connecticut A.J. Pappanikou Center for Excellence in Developmental Disabilities
263 Farmington Ave., MC 6222
Farmington, CT 06030-6222
Main Phone:  860-679-1500
Toll Free Number:  866-623-1315
Main Fax:  860-679-1571
TTY:  860-679-1502
Main Email:  bruder@uchc.edu
Website:  http://www.uconnucedd.org

Delaware

Center for Disabilities Studies
College of Education and Human Development
University of Delaware
461 Wyoming Road
Newark, DE 19716
Main Phone:  302-831-6974
Main Fax:  302-831-4690
TTY:  302-831-4689
Main Email:  mineo@udel.edu
Website:  http://www.udel.edu/cds

District of Columbia 

Georgetown UCEDD
Georgetown University
Center for Child and Human Development
3300 Whitehaven Street, NW, Suite 3300
Mailing address Box 571485
Washington, DC 20057-1485
Main Phone:  202-687-8807
Main Fax:  202-687-8899
TTY:  202-687-5503
Website:  https://ucedd.georgetown.edu/
Website 2:  https://gucchd.georgetown.edu/
Twitter:  https://twitter.com/GUUCEDD
Facebook:  https://www.facebook.com/GUUCEDD/

Florida

UCEDD,LEND Program:
Mailman Center for Child Development
University of Miami Miller School of Medicine
Department of Pediatrics
Department of Pediatrics (D-820)
P.O. Box 016820
Miami, FL 33101
Main Phone:  305-243-6801
Main Fax:  305-243-5978
Main Email:  darmstrong@med.miami.edu
Website:  http://mailmancenter.org
AUCD State Profile: AUCD FL State Profile.pdf

Georgia

Institute on Human Development and Disability
A University Center for Excellence in Developmental Disabilities Education, Research, and Service
College of Family and Consumer Sciences
River’s Crossing Building, The University of Georgia
850 College Station Road
Athens, GA 30602-4806
Main Phone:  706-542-3457
Main Fax:  706-542-4815
Main Email:  contact@ihdd.uga.edu
Website:  http://www.ihdd.uga.edu

Hawaii

Pacific Basin Program
University of Hawaii, Center on Disability Studies
1410 Lower Campus Road, #171F
Honolulu, HI 96822
Main Phone:  808-956-2303
Main Fax:  808-956-7878
Main Email:  kiriko@hawaii.edu
Website:  www.hawaii.edu/cds

Idaho 

Idaho Center on Disabilities and Human Development
College of Education, Health and Human Sciences
1187 Alturas Drive
Moscow, ID 83843
Main Phone:  208-885-6000
Main Fax:  208-885-6145
TTY:  800-432-8324
Main Email:  idahocdhd@uidaho.edu
Website:  http://www.idahocdhd.org
Facebook:  https://www.facebook.com/Idahocdhd/

Illinois 

University of Illinois UCE
Institute on Disability and Human Development (M/C 626)
Department of Disability and Human Development
The University of Illinois at Chicago
1640 West Roosevelt Road
Chicago, IL 60608-6904
Main Phone:  312-413-1647
Main Fax:  312-413-4098
TTY:  312-413-0453
Website:  http://ahs.uic.edu/disability-human-development/
Website 2:  http://go.uic.edu/DHD
Twitter:  https://twitter.com/idhd_uic
Facebook:  https://www.facebook.com/UICDHD/

Indiana 

Indiana Institute on Disability and Community
Indiana University
2810 East Discovery Parkway
Bloomington, IN 47408
Main Phone:  812-855-6508
Main Fax:  812-855-9630
Main Email:  iidc@indiana.edu
Website:  http://www.iidc.indiana.edu
Twitter:  https://twitter.com/IIDCIU
Facebook:  https://www.facebook.com/pages/Indiana-Institute-on-Disability-and-Community-at-Indiana-University/71615188471

Iowa

UCEDD,LEND Program:
Iowa’s University Center for Excellence in Disabilities
Center for Disabilities and Development
100 Hawkins Drive
Iowa City, IA 52242-1011
Main Phone:  319-384-5656
Main Fax:  319-356-8284
Main Email:  meredith-field@uiowa.edu
Website:  https://uihc.org/ucedd/
Website 2:  https://uihc.org/ucedd/iowa-leadership-education-neurodevelopmental-and-related-disabilities-project

Kansas 

Kansas University Center on Developmental Disabilities
University of Kansas
Schiefelbusch Institute for Life Span Studies
1200 Sunnyside Avenue
3111 Haworth
Lawrence, KS 66045-7534
Main Phone:  785-864-7600
Main Fax:  785-864-7605
Main Email:  kucdd@ku.edu
Website:  http://www.kucdd.org
Facebook:  https://www.facebook.com/ksucdd/?ref=aymt_homepage_panel

Kentucky

University of Kentucky Human Development Institute
University Center on Disability
University of Kentucky
126 Mineral Industries Building
Lexington, KY 40506-0051
Main Phone:  859-257-1714
Main Fax:  859-323-1901
TTY:  859-257-2903
Website:  http://www.hdi.uky.edu
Facebook:  https://www.facebook.com/ukhdi/

Louisiana

LSUHSC – Human Development Center
LSUHSC – Human Development Center
School of Allied Health Professions
411 So. Prieur Street – 4th Floor Room 472
New Orleans, LA 70112-2262
Main Phone:  504-556-7585
Main Fax:  504-556-7574
Website:  http://www.hdc.lsuhsc.edu

Maine

University Center for Excellence in Developmental Disabilities
The University of Maine
Center for Community Inclusion and Disability Studies
5717 Corbett Hall
Orono, ME 04469-5717
Main Phone:  207-581-1084
Toll Free Number:  800-203-6957
Main Fax:  207-581-1231
TTY:  800-203-6957
Main Email:  CCIDSMAIL@maine.edu
Website:  http://www.ccids.umaine.edu

Maryland

Maryland Center for Developmental Disabilities
Kennedy Krieger Institute
7000 Tudsbury Road
Gwynn Oak, MD 21244
Main Phone:  443-923-9555
Toll Free Number:  888-554-2080
Main Fax:  443-923-9570
TTY:  443-923-2645
Website:  http://www.kennedykrieger.org/community/maryland-center-developmental-disabilities

Massachusetts 

Institute for Community Inclusion/ UCEDD
University of Massachusetts Boston
100 Morrissey Blvd.
Boston, MA 02125
Main Phone:  617-287-4300
Main Fax:  617-287-4352
TTY:  617-287-4350
Main Email:  ici@umb.edu
Website:  http://www.communityinclusion.org

Michigan 

Michigan Developmental Disabilities Institute (MI-DDI)
Wayne State University
4809 Woodward Avenue
268 Leonard N. Simons Building
Detroit, MI 48202
Main Phone:  313-577-2654
Toll Free Number:  888-978-4334
Main Fax:  313-577-3770
TTY:  313-577-2654
Main Email:  middi@wayne.edu
Website:  http://ddi.wayne.edu
Twitter:  https://twitter.com/DDIatWSU
Facebook:  https://www.facebook.com/MIDDIatWSU/

Minnesota 

Institute on Community Integration
University of Minnesota
College of Education and Human Development
102 Pattee Hall
150 Pillsbury Drive SE
Minneapolis, MN 55455-0223
Main Phone:  612-624-6300
Main Fax:  612-624-9344
Main Email:  ici@umn.edu
Website:  http://ici.umn.edu
Website 2:  http://lend.umn.edu
Facebook:  https://www.facebook.com/InstituteonCommunityIntegration/

Mississippi 

Institute for Disability Studies: Mississippi’s UCEDD
The University of Southern Mississippi
118 College Drive #5163
Hattiesburg, MS 39406-0001
Main Phone:  601-266-5163
Toll Free Number:  888-671-0051
Main Fax:  601-266-5114
TTY:  888-671-0051
Main Email:  Rebekah.Young@usm.edu
Website:  https://www.usm.edu/ids/
AUCD State Profile: Institute for Disability Studies FY 2019 Report Card

Missouri 

UMKC Institute for Human Development (UCE)
215 W. Pershing
6th Floor
Kansas City, MO 64108
Main Phone:  816-235-1770
Main Fax:  816-235-1762
TTY:  800-452-1185
Main Email:  reigharda@umkc.edu
Website:  http://www.ihd.umkc.edu

Montana

The Rural Institute for Inclusive Communities
University of Montana
Corbin Hall
Missoula, MT 59812-7056
Main Phone:  406-243-5467
Toll Free Number:  800-732-0323
Main Fax:  406-243-4730
Main Email:  rural@ruralinstitute.umt.edu
Website:  http://ruralinstitute.umt.edu/
Twitter:  https://twitter.com/riic_ed
Facebook:  https://www.facebook.com/RuralInstitute
AUCD State Profile: AUCD MT State Profile.pdf

Nebraska 

Nebraska UCEDD
Munroe-Meyer Institute for Genetics and Rehabilitation
University of Nebraska Medical Center
985450 Nebraska Medical Center
Omaha, NE 68198-5450
Main Phone:  402-559-6483
Toll Free Number:  800-656-3937
Main Fax:  402-559-5737 (UCEDD)
Main Email:  mshriver@unmc.edu
Website:  http://www.unmc.edu/mmi
Twitter:  Unmc_mmi
Facebook:  https://www.facebook.com/MunroeMeyerInstitute
AUCD State Profile: HORNETS 2018 (1).pdf

Nevada 

Nevada Center for Excellence in Disabilities
University of Nevada, Reno
Mail Stop 285
Reno, NV 89557
Main Phone:  775-784-4921
Toll Free Number:  1-800-216-7988
Main Fax:  775-784-4997
TTY:  775-327-5234
Website:  http://nced.info/

New Hampshire

Institute on Disability / UCED
University of New Hampshire
Institute on Disability
10 West Edge Drive, Suite 101
Durham, NH 03824-3595
Main Phone:  603-862-4320
Toll Free Number:  800-238-2048
Main Fax:  603-862-0555
Main Email:  Contact.IOD@unh.edu
Website:  http://www.iod.unh.edu
Twitter:  http://twitter.com/unhiod
Facebook:  http://www.facebook.com/instituteondisability
AUCD State Profile: AUCD NH Profile

New Jersey

The Boggs Center on Developmental Disabilities
Department of Pediatrics
Rutgers Robert Wood Johnson Medical School
335 George Street
Suite 3500
New Brunswick, NJ 08901
Main Phone:  732-235-9300
Main Fax:  732-235-9330
Website:  http://rwjms.rutgers.edu/boggscenter

New Mexico 

University of New Mexico
Center for Development and Disability
Pediatrics
2300 Menaul Blvd NE
Albuquerque, NM 87107
Main Phone:  505-272-3000
Main Fax:  505-272-2014 (UCEDD)
Website:  http://cdd.unm.edu

New York

Rose F. Kennedy Center LEND
The Teaching Hospital of Albert Einstein College of Medicine
Montefiore Medical Center
1225 Morris Park Avenue
Bronx, NY 10461
Main Phone:  718-839-7162
Main Fax:  718-904-1162
Website:  http://www.einstein.yu.edu

North Carolina

Carolina Institute for Developmental Disabilities
The University of North Carolina at Chapel Hill
Campus Box 7255
Chapel Hill, NC 27599-7255
Main Phone:  919-966-5171
Main Fax:  919-966-2230
Website:  http://www.cidd.unc.edu/

North Dakota

North Dakota Center for Persons with Disabilities
Minot State University
Memorial Hall 203
500 University Avenue West
Minot, ND 58707
Main Phone:  701-858-3580
Toll Free Number:  800-233-1737
Main Fax:  701-858-3483
TTY:  701-858-3580
Main Email:  ndcpd@minotstateu.edu
Website:  http://www.ndcpd.org
Facebook:  https://www.facebook.com/North-Dakota-Center-for-Persons-with-Disabilities-NDCPD-118515191583313/
AUCD State Profile: AUCD in North Dakota

Ohio

University of Cincinnati Center for Excellence in Developmental Disabilities
Cincinnati Children’s Hospital Medical Center
Division of Developmental and Behavioral Pediatrics
3333 Burnet Avenue
MLC 4002
Cincinnati, OH 45229-3039
Main Phone:  513-803-0653
Main Fax:  513-803-0072
TTY:  513-636-4900
Main Email:  ucucedd@cchmc.org
Website:  https://www.ucucedd.org
Facebook:  www.facebook.com/ucucedd

Oklahoma

Center for Interdisciplinary Learning and Leadership
University of Oklahoma Health Sciences Center
College of Medicine
PO Box 26901, ROB 342
Oklahoma City, OK 73190-3042
Main Phone:  405-271-4500
Toll Free Number:  800-627-6827
Main Fax:  405-271-1459
TTY:  405-271-1464
Website:  http://www.ouhsc.edu/thecenter/

Oregon

Oregon Health & Science University UCEDD
Oregon Health & Science University
Institute on Development & Disability
707 SW Gaines St.
Portland, OR 97239
Main Phone:  503-494-8364
Main Fax:  503-494-6868
Main Email:  idd@ohsu.edu
Website:  http://www.ohsu.edu/ucedd
Twitter:  https://twitter.com/OHSUUCEDD
Facebook:  https://www.facebook.com/OHSU.UCEDDCPC/

Pennsylvania 

Institute on Disabilities/UCEDD
Temple University
1755 N 13th Street, Suite 411
Howard Gittis Student Center – South
Philadelphia, PA 19122
Main Phone:  215-204-1356
Main Fax:  215-204-6336
TTY:  215-204-1356
Main Email:  iod@temple.edu
Website:  http://disabilities.temple.edu

Puerto Rico 

Puerto Rico University Center for Excellence on Developmental Disabilities/IDD
Graduate School of Public Health
Medical Sciences Campus
University of Puerto Rico
P.O. Box 365067
San Juan, PR 00936-5067
Main Phone:  787-754-4377
Toll Free Number:  866-754-4300
Main Fax:  787-764-5424
Website:  http://iddpr.rcm.upr.edu/

Rhode Island

UCEDD Program:
Paul V. Sherlock Center on Disabilities
Rhode Island College
600 Mount Pleasant Avenue
Providence, RI 02908
Main Phone:  401-456-8072
Main Fax:  401-456-8150
Website:  http://www.sherlockcenter.org

South Carolina

Center for Disability Resources
University of South Carolina
Department of Pediatrics
School of Medicine
Columbia, SC 29208
Main Phone:  803-935-5231
Main Fax:  803-935-5059
Website:  http://uscm.med.sc.edu/cdrhome/

South Dakota 

Center for Disabilities
Sanford School of Medicine of The University of South Dakota
Department of Pediatrics
1400 West 22nd Street
Sioux Falls, SD 57105-1570
Main Phone:  605-357-1439
Toll Free Number:  800-658-3080
Main Fax:  605-357-1438
TTY:  800-658-3080
Main Email:  cd@usd.edu
Website:  http://www.usd.edu/cd
Twitter:  https://twitter.com/CD_SouthDakota
Facebook:  https://www.facebook.com/CDSouthDakota/

Tennessee 

Boling Center for Developmental Disabilities
University of Tennessee Health Science Center
711 Jefferson Avenue
Memphis, TN 38105
Main Phone:  901-448-6511
Toll Free Number:  888-572-2249
Main Fax:  901-448-7097
TTY:  901-448-4677
Website:  http://www.uthsc.edu/bcdd/

Texas

Texas Center for Disability Studies
The University of Texas at Austin
Commons Learning Center
10100 Burnet Road
Austin, TX 78758-4445
Main Phone:  512-232-0740
Toll Free Number:  800-828-7839
Main Fax:  512-232-0761
TTY:  512-232-0762
Website:  https://disabilitystudies.utexas.edu/
Twitter:  https://twitter.com/TCDS_UT
Facebook:  https://www.facebook.com/TexasCenterforDisabilityStudies

Utah

Center for Persons with Disabilities
Utah State University
University Center for Excellence in Disabilities
6800 Old Main Hill
Logan, UT 84322-6800
Main Phone:  435-797-1981
Toll Free Number:  866-284-2821
Main Fax:  435-797-3944
TTY:  435-797-1981
Website:  http://www.cpd.usu.edu
Twitter:  https://twitter.com/@cpdusu
Facebook:  https://www.facebook.com/cpdusu/

Vermont

Center on Disability and Community Inclusion
The UCEDD of Vermont/University of Vermont
College of Education and Social Services
Mann Hall – 3rd Floor
208 Colchester Avenue
Burlington, VT 05405-1757
Main Phone:  802-656-4031
Main Fax:  802-656-1357
Main Email:  Jeanne.Nauheimer@uvm.edu
Website:  http://www.uvm.edu/cdci/
Twitter:  @CDCIatUVM
Facebook:  https://www.facebook.com/CDCIatUVM/

Virginia

Partnership for People with Disabilities
Virginia University Center for Excellence
Virginia Commonwealth University
PO Box 843020
700 E. Franklin Street
Richmond, VA 23284-3020
Main Phone:  804-828-3876
Main Fax:  804-828-0042
TTY:  800-828-1120
Website:  http://www.vcu.edu/partnership

Washington

Center on Human Development and Disabilities
University of Washington
Center on Human Development and Disability
PO Box 357920
Seattle, WA 98195-7920
Main Phone:  206-543-2832
Main Fax:  206-543-5771
Main Email:  Chdd@u.washington.edu
Website:  http://www.depts.washington.edu/chdd/ucedd.html

West Virginia

Center for Excellence in Disabilities (CED)
West Virginia University
959 Hartman Run Road, Research Park
Morgantown, WV 26505
Main Phone:  304-293-4692
Toll Free Number:  888-829-9426
Main Fax:  304-293-7294
TTY:  800-518-1448
Main Email:  contact@cedwvu.org
Website:  http://www.cedwvu.org/
Facebook:  https://www.facebook.com/wvuced/?fref=ts

Wisconsin

Waisman Center
University of Wisconsin-Madison
1500 Highland Ave
Madison, WI 53705-2280
Main Phone:  608-263-1656
Main Fax:  608-263-0529
Website:  http://www.waisman.wisc.edu/
Website 2:  https://wilend.waisman.wisc.edu/

Wyoming

Wyoming Institute for Disabilities (WIND)
University of Wyoming
Department 4298
1000 E. University Avenue
Laramie, WY 82071
Main Phone:  307-766-2761
Main Fax:  307-766-2763
TTY:  307-766-2720
Main Email:  uw.wind@uwyo.edu
Website:  http://www.uwyo.edu/wind
Twitter:  https://twitter.com/wind_wyo
Facebook:  https://www.facebook.com/Wyominginstitutefordisabilities/?ref=aymt_homepage_panel

 

Summer Sensory Activities

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June 20th mark the first day of summer. In many places with Covid-19 still looming around, summer fun may be limited but still there is always an opportunity to create sensory activities. the following links below are some suggestions. Some of the links show ways to create sensory bins using different themes. Enjoy and stay safe.

5 summer sensory activities

10 awesome summer sensory play activities

10 washing activities summer sensory play ideas

17 cool summer sensory activities that help kids

Ideas for summer sensory play

Must-try summer sensory activities

Sensory Summer

Spring and summer sensory bins

Summer Sensory Bins

Summer sensory play ideas for kids with ice and water

June Day Habilitation Activity Ideas

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Click Here to Download: June Habilitation Activity Ideas

Prader Willi Syndrome Factsheet

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Download Here: prader willi fact sheet

Cri Du Chat Factsheet

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Download Here: cri du chat fact sheet

Fact Sheet: Indivisible Disabilities

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Download Here: invisible disability fact sheet

Teaching Special Needs Individuals Temperature Taking

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In some residences and group homes, individuals are being monitored for COVID19 by daily temperature readings. People with disabilities are probably used to getting their temperatures taking each time they are seen by their physician. In these challenging times, why not teach the skill of taking one own’s temperature. It is a basic independent living skill to learn.

 

Using a digital thermometer would probably be the most effective and it is also easy to read. teaching thermometer reading affects the following skill:

  • Attention Skills
  • Follow Directions
  • Follow 2-step commands
  • Personal Care
  • Self-advocacy skills

Prerequisite skills

  • understand cause and effects
  • able to understand numbers
  • focus attention 1-5 minutes
  • Understand sequences

Objective: With modeling, student will be able to accurately read the thermometer

Time: 5 minnutes

Material: digital thermometer (best used for underarm and the mouth)

Steps:

  1. explain that a normal temperature reading is considered around 98.7 and temperature taking is done to determine if a person has a fever or is sick.
  2. The teaching method best used is through  modeling. Explain the steps to the individual and begin by taking your own temperature first.
  3. Once done, inform the individual he should do the same by using the following steps:
  • The student will pick up the thermometer
  • The student will wash the thermometer
  • The student will carefully place the tip of the thermometer under his/her tongue
  • With the mouth closed, the student will leave the thermometer in until he/she hears a beeping sound
  • The student will remove the thermometer
  • The student will accurately read the temperature.

You can also create a temperature log, where the individual takes their temperature on a daily basis and writes down their temperature on a chart.

Developmental Disability Factsheet

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Download Here: developmental disability fact sheet

10 Easter Fine Motor Activities

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Two more days until Easter. Just enough time to work on fine motor skills and create some fun activities. These activities will help to develop fine motor skills.

20 fine motor and sensory kids activities for Easter

25 Easter activities for kids

Easter Activities

Easter fine motor activities

Easter egg fine motor activities and ideas for kids

Easter fine motor color matching activity

Easy Easter fine motor skill craft

Fine motor Easter egg and chicks crafts for kids

Low-prep Easter fine-motor activities

Top to Easter fine motor activities

10 Passover Craft Activities

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Passover,m also known as Pesach is the Jewish festival celebrating the exodus of the Israelite’s from Egyptian slavery. There are craft ideas in the link below that are fun as well as improving fine motor skills including writing, cutting, gluing, painting and buttoning.

Other skills developed from these activities include attention to task, following directions, following two- step commands, and listening.

8 fun crafts to get kids ready for Passover

8 Passover activities to do with your kids

9 great Passover crafts

10 kid friendly crafts for Passover

15 DIY Passover Seder plates your kids will love to make

15 Passover games and activities

Passover activity pages for kids

Passover crafts for kids

Passover teacher resources

Planning a child-friendly Seder

COVID-19 and Handwashing Powerpoint

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Most news today whether it is social media, newsprint or broadcasting, focuses on the crisis of the COVID-19. It seems information changes everyday and we are still learning ways to protect ourselves. When the news of COVID-19 first appear, there was emphasis on the implications for people who have severe underlying conditions  such as heart or lung disease and diabetes. The picture painted were people that were over the age of 65 who were more likely to be at risk for developing serious complications from COVID-19.

It occurred to me that very little information indicated that people with disabilities and special risk also fall under the high risk category. for us who are parents or professionals  (in some cases both), we know the dangers of this deadly disease for children and adults with serious medical issues.

Many special needs children and adults have co-occurring issues including chronic heart disease, GI issues, diabetes, asthma, seizure disorders, GERD, and breathing issues.

For this reason, it is all the more reason to ensure that professionals, frontline staff and families know how to hand wash properly.  The Powerpoint focuses on the transmission of the virus as well as the appropriate way to wash hands. You will find the link to the Powerpoint at the bottom of the page.

COVID-19 and Hand Washing

Oatmeal Cookie Activity

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This is a fun activity for students and adults with special needs who would like to work on increasing their fine motor skills. This activity includes both a coloring and tracing activity. you can make several copies to print out for additional practice at a later time. Click on the link on the bottom of the page.

Download the activity here: COLORING AND TRACING ACTIVITY

 

Grilled Cheese Sandwich Lesson Plan

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Goal: Increase Independent Living Skills

Lesson Objective: Student will make a grilled cheese sandwich with verbal assistance.

Prerequisite Skills: 

  • ability to use a knife
  • able to follow directions

Introduction: A fun and easy meal to make with an individual with a developmental disability is a grilled cheese sandwich. Very few ingredients are needed to make this tasty meal and it is often one of the first foods that many people learn to make.  This activity allows an opportunity for independence and a great reward when completed. The instructor will follow the following steps:

Step 1: The instructor will first make sure the person washes and dries their hands appropriately.

Step 2: The instructor will allow for choices. “What type of bread would you like to use.”, What type of cheese would you like to use?”

Step 3. Depending on the skill level, the instructor will assist the individual or place the pan n top of the stop

Step 4. The instructor will, with verbal prompting or hand over hand, ask the individual to pick the the knife.

Step 5. Once the individual picks up the knife, the instructor will verbally prompt or using hand over hand, assist the individual with cutting the butter.

Step 6. Once the butter is cut, the instructor will verbally prompt the individual to place the butter in the pan.

Step 7. While the butter is meting in the pan, the instructor will prompt the individual to take out 2 slices of bread and place on a plate

Step 8. The instructor will prompt the individual to pick up the knife and butter each slice of the bread.

Step 9. Once completed, the instructor will prompt the individual to take cheese out of the refrigerator and place on the bread.

Step 10. The instructor will prompt or assist the individual to place the sandwich into the pan

Step 11. Depending on the skill level, the instructor will turn the bread over when brown or closely supervise the individual.

Step 12. Once both sides are brown, the instructor will assist or supervise the individual removing the cheese toast with a spatula and place on a plate

Step 13. The instructor will prompt the individual to turn off the stove. i.e. “what do you think you should do next?”

Step 14. The instructor will prompt the individual to cut the cheese toast in half.

Step 15. The individual will start to eat.

Duration:10-15 minutes

Materials:

  • 2 slices of bread
  • margarine or butter
  • Cheddar or American cheese
  • frying Pan
  • knife
  • spatula

Skills Taught:

  • Attention skills
  • Choice-making
  • Fine motor
  • Independent living skills
  • Listening comprehensive
  • Memory
  • Sensory
  • Sequencing
  • Task attention

Special Considerations

Be mindful of any protocols for the individuals. make sure you are serving the meal with the right consistency. For example does the individual require his/her food to be cut up or are they able to eat whole foods?

St. Patrick Day Activities

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St. Patrick’s Day is finally here!! Did you know that St. Patrick’s day celebrates the Roman Catholic feast day of the patron saint of Ireland. One way to celebrate  Here are some fun fine motor activities to do with your students. Children and adults with special needs often face challenges with coordination of the small muscles that affect writing, and grasping objects. These activities will help students both strengthen and maintain abilities in fine motor control and dexterity. The following are links to fine motor activities:

Fine Motor Activities

20 St. Patrick’s Day activities for kid’s fine motor and sensory skills– Growing hands on kids

33 St. Patrick’s Day crafts for kids that boost fine motor skills– Hands on As We Grow

Charmingly fun St. Patrick’s day fine motor- The Letters of Literacy

St. Patrick’s Day fine motor activities– Pink Oatmeal

St. Patrick Day fine motor activities– Pre K Pages

St. Patrick’s Day fine motor activities– Trillium Montessori

St. Patrick’s Day fine motor activities for kids– Little Bins, Little Hands

St. Patrick’s Day fine motor activities kids will love– STEAMsational

St. Patrick’s Day kids fine motor activities– Mess for Less

Sensory Activities

Sensory activities serve the purpose of supporting growth in the area of cognitive development and problem-solving. Sensory play focuses on stimulating the senses of touch sight, hearing and movement.

Sensational St. Patrick’s Day Sensory Activities- Letters of Literacy

St. Patrick’s Day sensory bin– Teaching Mama

St. Patrick’s Day Sensory Bin and Activities– Fantastic Fun and Learning

St. Patrick’s Day Sensory Jars– Fun Littles

St. Patrick’s Day sensory play– Fantastic Fun and Learning

St. Patrick’s Day sensory play and craft- No Time For Flashcards

Free Printable Cerebral Palsy Fact Sheet

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Want to learn more about Cerebral Palsy?  The following is a fact sheet that provides information on the facts of cerebral palsy including the definition and the prevalence, signs, types, and causes.

The fact sheet also includes information on teaching strategies and organizational resources.

Download fact sheet here

Attention Skills Strategies

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Attention is defined as the ability to keep the mind on something and the ability to concentrate. Skills often include careful observation or listening. The ability for a student to sustain attention, motivation, language, and sensory intervention. Children with autism, ADHD, intellectual disabilities, executive functioning disorders, and Cri du Chat have difficulty sustaining attention over a long period of time.

Strategies they may provide to be useful include:

  • Eye Contact
  • Repeat instructions
  • Provide frequent breaks
  • Use in a leadership role.
  • Provide choices in test-taking
  • Ongoing prompting.

The following are articles on ways to improve concentration and attention:

4 concentration activities for students – Getting Smart

7 in-class activities to improve concentration in children-TEACH

10 Games to boost attention and focus– Heart-Mind Online

Attention Activities– The OT Toolbox

Activities that help develop attention skills– Boise Speech and Hearing Clinic

Attention and Concentration– Kidsense

Brain training activities– Our Journey Westward

Pay attention: Ten steps to improving attention and concentration- ADHD Center

The attention games: Catching focus through fun– Additude

Using play to increase attention– Miss Jaime OT

February Day Habilitation Activity Ideas

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February has arrived!! here in the northeast, it is seasonably warm , but still the month known for groundhog and valentine’s day. The following are February observances, celebrations, events, and holidays that can be used as ideas for your Day Habilitation Program.

Keep in mind the following when planning activities for individuals with special needs:

  • People with intellectual/developmental disabilities are more likely to learn when using a multi-sensory approach which includes engaging people on all levels where they are able to use some of their senses. For example a cooking activity should include, allowing individuals to see what they are doing, taste, smell, and touch, etc.
  • Make sure each activity is broken into small steps
  • Use continuous probing
  • Provide prompting strategies such as independence, verbal, gestural, hand over hand and physical prompting.
  • Allow extra time to complete the task
  • Give immediate feedback including praise.

Top 10 Trainings Every Bus Driver and Matron Should Have

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Transporting a child with a disability to school on a bus is indeed a huge responsibility. For children with a disability, alertness matters as well ensuring bus drivers and matrons are trained on managing many issues that can arise on the bus. the following are the top ten trainings every bus driver and matron should have:

CPR. Although in adults cardiac arrest is often sudden and results from a cardiac cause, in children with cardiac arrest is often secondary to respiratory failure and shock. A CPR course will teach the sequence of steps for children including basic steps for calling for additional assistance.

First Aid. A course in first aid will train bus drivers and matrons steps to take in the case of an emergency. Children with disabilities have a variety of issues, taking a course in a first aid course can help to save a child’s life. Courses should include topics on choking, bleeding, injuries, allergic reactions, sudden illnesses and signs and symptoms.

Disability Awareness. This will  help both bus drivers and matrons identify and understand their own personal attitudes and perception regarding children and adults with disabilities.

Overview of Developmental Disability. Understanding the various types of developmental disabilities is vital in transporting children and adults from home to school. A course on developmental disability should include information on learning about the different types of disabilities,  including cognitive, physical and invisible. An overview should also include information on barriers that exist for people with disabilities.

Introduction to Epilepsy. Children and adults with disabilities tend to experience a high prevalence of epilepsy. Both drivers and matrons should be aware there are several types of seizures from generalize seizures to partial seizures. Some children experience seizures where it may appear they are simply staring. A training on epilepsy will teach ways to recognize the signs of epilepsy what do to in the event of a seizure while driving.

Understanding Behaviors. All behaviors have a meaning . It is a way of communicating for children and adults who may not have the ability to express pain, fear or anger verbally.

Bus Safety and Disabilities. Bus drivers are generally taught how to drive the bus or van in a safe manner. But what in instances when there is an emergency with children with disabilities on board? There should be training on emergencies that can occur on the bus including fires, accidents, and vehicle breakdown.

Recognizing Abuse. Studies show a large number of children with disabilities are abused and even larger numbers are bullied. a training course in recognizing abuse should cover not only looking for physical signs, but also children who are mistreated and neglected as well.

Safe Loading. Keeping children safe on the bus on van is one of the key responsibilities of the bus driver and matron. Some children with disabilities may use wheelchairs and other adaptive equipment. Trainings should include knowledge on using the wheelchair lift including the manual lift in the case of an emergency. Vital information includes safe securing of lap trays, electrical wheelchairs, vest of harness which should be monitored during the bus ride.

Overview of Autism. While no two students are alike. there are general characteristics that children with autism may exhibit including, anxiety, depression, seizure disorder, cognitive delays, sensory challenges and repetitive behaviors. Being well-informed of autism and how to mange will make the bus ride go smooth on those challenging days.

Can you think of any other important trainings bus drivers and matron should have when transporting a child with a disability?

 

 

January Day Habilitation Activity Ideas

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Januay is considered the coldest month of the year in the Northern Hemisphere. The following are January observances, celebrations, events, and holidays that can be used as ideas for your Day Habilitation Program.

You can download the PDF format here:January Day Habilitation Activity Ideas

Keep in mind the following when planning activities:

  • People with intellectual/developmental disabilities are more likely to learn when using a multi-sensory approach which includes engaging people on all levels where they are able to use some of their senses. For example a cooking activity should include, allowing individuals to see what they are doing, taste, smell, and touch, etc.
  • Make sure each activity is broken into small steps
  • Use continuous probing
  • Provide prompting strategies such as independence, verbal, gestural, hand over hand and physical prompting.
  • Allow extra time to complete the task
  • Give immediate feedback including praise.

What You Should Know About GERD and Developmental Disabilities

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Feeding problems are common in people with an  intellectual/developmental disability. For example, it is reported that 37% of individuals with diplegia or hemiplegia and 86% of individuals with quadriplegia experience GERD. It is very common in people with cerebral palsy and can show up as anemia, failure to thrive and reoccurring infections.

It is usually missed by people who have been feeding and serving food to individuals with disability due to its subtle signs.

What is Gastroesophageal Reflux? (GERD)

GERD occurs when the muscle connecting  to the esophagus is weak and opens under pressure, allowing the stomach contents to flow back into the esophagus. It is the acid from the stomach to the esophagus. this will irritate the lining of the esophagus and causes heartburn. Without treatment, GERD can cause complications.

What causes GERD?

GERD is usually caused by inflammation from the exposure of the esophagus to the stomach acid. The following can cause GERD:

  • diet such as fatty foods, coffee, peppermint and chocolate
  • decreased muscle tone
  • overweight
  • backup in blockage of the intestinal tract.

There are many reasons for the high incidence of GERD in individuals with intellectual disability including immobility and positioning, abnormal postures, medication use and excessive drooling.

What is a developmental disability?

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

For people with limited communication, the following are possible signs of gastroesophageal reflux:

If you suspect GERD, make arrangements for the person to be evaluated by a physician.

Down Syndrome and Obesity

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Obesity is a major health concern and is more common in individuals with Down syndrome than the general population. Obesity is defined as excessive fact accumulation that increases health risk. It is an abnormal accumulation of body fact usually 20% of a person’s ideal body weight.

Medical complications of obesity includes sleep apnea, lung disease, pancreatitis, heart disease, cancer, arthritis, inflamed veins and gout. When the body mass increases, so does the risk of having a heart attack or heart failure.

In a study published by the American Association Intellectual and Developmental Disabilities found a difference between studies on children versus adults with Down syndrome. Children with Down syndrome have consistently been found to exhibit a reduced resting metabolic rate meaning children with Down syndrome are at a great risk for weight gain since they will burn fewer calories. at rest during activities.

Children with Down syndrome also tend to have a condition known as hypothyroidism. Approximately 10 percent of children with Down syndrome have hypothyroidism. As children with Down syndrome get older, eating behaviors change leading to obesity (Approximately 30%). These changes may be due to low muscle tone or inactivity due to thyroid problems or heart conditions.

Exercise and recreation are crucial to the well-being of individuals with Down syndrome. The following are strategies for helping to maintain weight control and to live longer and healthier lives:

  1. Develop a regular exercise program. According to Drs. Chicoine and McGuire, authors of The Guide to Good Health for Teens and Adults with Down syndrome, Exercise should be free of risk. Push ups and weightlifting are not appropriate due to many people with Down syndrome who have issues with the upper 2 vertebrates.
  2. Swimming is an effective exercise. Many pool have walking exercises in the pool as well.
  3. Exercise should be fun, socially and realistic.
  4. For older adults with Down syndrome, look for teachable moments to teach portion control, drinking enough fluids, and eating a well-balanced meal.

Reference

Chicoine, B. and McGuire, B. (2010). The Guide to Good Health for Teen and Adults with Down Syndrome. Bethesda, MD

Dysgraphia and Workplace Accommodations

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Some might be surprised to learn that there are several types of learning disabilities. Dysgraphia is describes as a learning disability that affects writing, spelling and fine motor skills. Dysgraphia is a neurodevelopmental disorder that can occur as a stand alone disorder or part of a co-occurring disorder with other disabilities such as ADHD, Autism, and Dyslexia. Typically it is diagnosed or discovered in the early years when children are beginning to learn how to write. Most adults often remain undiagnosed.

Early Signs of Dysgraphia

Signs and symptoms of dysgraphia generally begin to show up when children began to lean how to write. Early signs of Dysgraphia include:

  • Inconsistent spacing between letters
  • Poor spatial planning
  • Poor spelling
  • Unable to read own handwriting
  • Poor fine motor skills
  • Omitted words
  • Writes slow
  • Pain in hand from writing
  • Messy unorganized papers
  • Difficulty organizing thoughts on paper
  • Illegible printing and cursive letter formation
  • Slopping handwriting
  • Tight, cramped pencil grip
  • Tires quickly when writing
  • mixes upper and lower case or irregular sizes and shapes of letters.

Download a free dysgraphia checklist

Signs and Symptoms in the Workplace

A early signs that rarely disappears is having a “sloppy” handwriting. The person when writing leaves out letters at the end of a sentence, difficulty reading own handwriting after meetings, trouble with filling out routine forms, displays unorganized papers on the desk, difficulty thinking and writing at the same time and tends to mixes upper and lower case letters when writing. The person will also avoid writing when possible and show a preference to using a computer or texting neatness, line spacing, staying inside margins and capitalization rules.

Strategies to Use in the Workplace
  1. If you have a smart phone, you can use the device to record meetings, interviews or instructions that are given to you.
  2. Assitive technology such as tablets, computers and Apps are also useful in transcribing information
  3. Take the time to organize your desk before you leave work in the evening. Prioritize your workflow and create a plan for the next day.
  4. Pre-write. Before you take on the task of writing, create an outline on paper.

Signs and Symptoms of Fetal Alcohol Spectrum Disorders

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Fetal Alcohol Spectrum Disorders (FASD) according to the National Organization on Fetal Alcohol Syndrome describes the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These affects may include physical, mental, behavioral, and/or learning disabilities with lifelong implications.

Fetal Alcohol Spectrum Disorders is not a diagnosed rather, it is a term that is used to describe a wide-range of effects on a person whose mother drank alcohol during her pregnancy. Fetal Alcohol Spectrum Disorders, show in three areas: abnormal facial characteristics, slowed growth and the central nervous system.

Fetal Alcohol Spectrum Disorders affects each person differently. Signs and symptoms include the following:

  • Abnormal facial features including a smooth ridge between the nose and upper lip
  • Small head size
  • Shorter than average height
  • Poor coordination
  • Hyperactive behavior
  • Difficulty with attention
  • Poor memory
  • Difficulty in school
  • Learning disabilities
  • Speech and language delays
  • Intellectual disability or low IQ
  • Poor reasoning and judgement skills
  • Sleep and sucking problem
  • vision and hearing problems
  • Seizures
  • Processing information
  • Problems with the heart and kidneys
  • Poor concept of time
  • Trouble getting along with others
  • Staying on task

Aspiration Precautions

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Children and adults with developmental disabilities often face challenges with eating, drinking and swallowing disorders than the general population. It is estimated that adults with intellectual disabilities require support from caregivers during mealtime. It is common among people who have a diagnosis of cerebral palsy, intellectual disability, physical  disability and muscular dystrophy.

Dysphasia is a medical term used to describe any person having difficulty swallowing foods and liquids taking  more energy and time to move food from the mouth to the stomach. Signs of dysphasia may include:

  • Drooling
  • Food or liquid remaining in the oral cavity after swallowing
  • Complaints of pain when swallowing
  • Coughing during or right after eating or drinking
  • Extra time needed to chew or swallow
  • Reflux of food

Dysphasia can lead to aspiration. Aspiration is defined when food, fluid, or other foreign material gets into the trachea or lungs instead of going down the esophagus and into the stomach. when this occurs, the person is able to cough to get the food or fluid out of their lungs, in some cases especially with children and adults with disabilities may not be able to cough. This is known as Silent Aspiration.

A complication of aspiration is Pneumonia which is defined as inhaling food, saliva, and liquids into the lungs

According to the Office of People with Developmental Disabilities Health and safety Alert, factors that place people at risk for aspiration include:

  • Being fed by others
  • Weak or absent coughing, and/or gag reflexes, commonly seen in people with cerebral palsy.
  • food stuffing and rapid eating/drinking
  • Poor chewing or swallowing pills
  • GERD- the return of partially digested food or stomach contents to the esophagus
  • Providing liquids or food consistencies the person is not able to tolerate such as eating whole foods.
  • Seizures that may occur during eating and/or drinking.

How to recognize signs and symptoms of Aspiration:

  • Choking or coughing while eating or just after eating
  • Drooling while eating or just after eating
  • Eyes start to water
  • Shortness of breath
  • Fever 30 minutes after eating
Intervene immediate if there are signs of aspiration:
  • Stop feeding immediately
  • Keep the person in an upright position
  • Call 911 if the person has difficulty or stops breathing and no pulse
  • Start rescue breathing

Minimize aspiration from occurring by serving the appropriate food texture and liquid consistency. If you are not sure of the right consistency, check with your health care provider. The following are pictures of food consistencies.

Courtesy of OPWDD

Courtesy of OPWDD

Whole. Food is served as it is normally prepared; no changes are needed in
preparation or consistency

Courtesy of OPWDD

1 ” Pieces cut to size. Food is served as prepared and cut into 1-inch pieces
(about the width of a fork).

Courtesy of OPWDD

1/4 Pieces Cut to Size. Food is cut with a knife or a pizza cutter or placed in a food
processor and cut into ¼ -inch pieces (about the width of a #2 pencil)

Courtesy of OPWDD

Ground. Food must be prepared using a food processor or comparable equipment
until MOIST, COHESIVE AND NO LARGER THAN A GRAIN OF RICE, or relish
like pieces, similar to pickle relish. Ground food must always be moist. Ground meat
is moistened with a liquid either before or after being prepared in the food processor
and is ALWAYS served with a moistener such as broth, low fat sauce, gravy or
appropriate condiment. Hard, dry ground particles are easy to inhale and must be
avoided.

 

Courtesy of OPWDD

Pureed. Food must be prepared using a food processor or comparable equipment.
All foods are moistened and processed until smooth, achieving an applesauce-like or
pudding consistency. A spoon should NOT stand up in the food, but the consistency
should not be runny. Each food item is to be pureed separately, unless foods are
prepared in a mixture such as a soup, stew, casserole, or salad.

Aspiration Precautions

  • Make sure the person eats slowly and takes small bites of food
  •  Ensure the person takes small sips of liquids
  • Focus on the person’s swallowing
  • Make sure the person remains upright for a minimum of thirty minutes after eating

Data and Statistics- Fetal Alcohol Spectrum Disorders (FASD)

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  • Fetal alcohol disorders range from mild intellectual and behavioral problems to extreme disorders that lead to profound disabilities or premature death.
  • FAS are not heredity: they are 100 percent preventable the sole cause is prenatal alcohol exposure.
  • Of the children heavily exposed to alcohol before birth, about 40 percent are estimated to exhibit fetal alcohol disorders, with 4 percent affected by full blown fetal alcohol syndrome.
  • Women who give birth to a child with FAS are 800 times more likely to give birth to subsequent children with the syndrome than are women who have never given birth to a child with the syndrome.
  • Each year, there are four times as many infants born with fetal alcohol disorders as there are infants born with muscular dystrophy, spina bifida and Down syndrome combined.
  • 15 out of 100 women of childbearing age do not know that drinking alcohol during pregnancy is dangerous.
  • FASD affects about 40,000 newborns each year
  • A survey of pediatrician reported in the journal Pediatrics revealed that only 13 percent routinely discussed the risk of drinking during pregnancy with their adolescent patients.

  • According to the Center for Substance Abuse Prevention, 1 in 9 pregnant women binge drink during the first trimester.
  • FASD are 100% incurable
  • 60% of individuals with FASD find themselves in legal trouble at some point in their lives.
  • There is a high prevalence of epilepsy (5.9%) in individuals with FASD compared with individuals who did not have the disorder.
  • 94% of individuals heavily exposed to alcohol in the womb are diagnosed with ADHD
  • It is estimated a lifetime cost for one individual with FASD is 2 million
  • 50% of adults with FASD were clinically depressed

SEPTEMBER IS FETAL ALCOHOL SPECTRUM DISORDER AWARENESS MONTH

School Accomodations for Students Diagnosed with Fetal Alcohol Spectrum Disorders

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The Centers for Disease Control and Prevention (CDC) describes Fetal Alcohol Spectrum Disorders as a group of conditions that can occur in a person whose mother drank during pregnancy. The effects of the fetal alcohol disorders includes many learning challenges including hyperactivity, poor attention span, memory issues, coordination challenges, anxiety, speech and language delays, problem-solving issues, difficulty staying on task, behavioral challenges and social interaction.

Some children with FASD have co-occurring disorders or are often mis-diagnosed.

The following are the most common disorders:

  • Oppositional Defiant Disorders (ODD)
  • Attention Deficit Hyperactive/Inattentive Disorder (ADHD)
  • Learning Disabilities
  • Speech and language delays
  • Anti-Social Personality Disorder

The following are Accommodations that will help students succeed:

  • Use a multi-sensory approach to learning
  • Allow extra time for testing assessments
  • Chunk the test into parts
  • Reduce distractions by using preferential seating
  • Allow the student to take breaks
  • Use oral test
  • Provide oral instructions
  • Use a checklist for the student to use
  • Allow the student to use a timer
  • Use repetition
  • Check in with the students for understanding and provide feedback
  • Teach calming strategies
  • Use assistive technology
  • Use social stories
  • Teach social skills

CDKL5 and Teaching Strategies

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CDKL5 is a neurodevelopmental disorder that includes signs of early-onset epilepsy. In fact 90% of children diagnosed with CDKL5 disorder are more likely to develop epilepsy. CDKL5 is derived from a gene and one of the most common causes of genetic epilepsy. Children diagnosed with CDKL5 also face many other developmental challenges as well.

Image by PublicDomainPictures from Pixabay

Click here to download PDF version

Facts

It is a neurodevelopment disease caused by the CDKL5 gene.

It impacts cognitive, motor, speech and visual function

It affects 1 in 40,000-60,000 children each year.

CDKL5 was previously called STK9

The disorder mainly affects females

The cause of CDKL5 deficiency disorder is unknown

Signs of CDKL5 deficiency includes epileptic seizures

Starting within hours of birth to 2 years of life, some children often go for 24 hours or more without sleeping.

Signs and Symptoms of CDKL5
Teaching Strategies

The following are teaching strategies that can used when teaching children with the CDKL5 disorder:

  • Provide frequent breaks
  • Use assistive technology
  • Provide extra time
  • Repeat directions
  • Use concrete items when possible
  • Break task into smaller steps
  • Teach in sequence
  • Use a multisensory approach
  • Use hand-on material

 

Children's Hospital.org
Genetic Home Reference
International Foundation for CDKL5 Research
Rare Diseases.org

 

 

Sensory Eating is not Picky Eating

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Published by: Speaking of Autism

I want you to imagine that you are a kid once again, maybe ten or eleven years old. You are sitting down in the evening with your family for dinner. The table is set, and your parents bring out what will be tonight’s entree: a cut of cold, raw chicken breast. It’s slimy pink mass slides onto the plate in front of you, and soon after your whole family is chowing down on the raw cuts of meat. You can’t stand to even watch anyone else eat the raw chicken, let alone fathom yourself choking it down. Yet, despite the very real disgust and aversion you feel towards the raw chicken breast, somehow it’s you who are strange for not wanting to eat it. Maybe you’re called “picky” or told that you simply need to and just learn to enjoy raw chicken like everyone else. Maybe you go hungry every night at dinner because the only thing being served are items as aversive as the cuts of raw chicken. Click here to read the rest of the story.

Free Printable Money WorkSheets

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Summer will be here before you know it. If you want your student/ child or individual to continue practicing math skills, I have provided below 4 money sheets that you can printout and make several copies. The money sheets allows the child to work on both IEP and ISP goals including:

  1. Identifying coins
  2. Matching coins
  3. Visual discrimination
  4. Counting
  5. Transition skills
  6. Visual learners

 

Burger King.Worksheet. This is a fun activity especially for children, students and adults that enjoy going to Burger King. The individual will choose the picture and subject the cost of the item from $10.00.  This activity people with dysgraphia, increase money skills, attention skills, task initiation skills and works well as a pre-trip to Burger King. focusing on transition skills.

Matching Dimes Worksheet– The matching dime activity is great for goals on counting and identifying a time. it is useful for children adults that are visual learners and provides hands on materials. The students learning ability will increase with the use of actual dimes.

Circle Nickle Worksheet – This worksheet give the individual an opportunity to work on counting, identify various coins as well as explaining the value of the coin. The worksheet also provides additional support and increases visual discrimination skills.

Dime Counting – helps the child, student or adult with special needs practice counting skills and visual memory.

My plan for the rest of the year is to provide you with more resources that are more functional and allows you to download information.

 

Memorial Day Sensory Activities

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Memorial Day is an American holiday observed to honor the men and women who died while serving in the U.S. Military. It originated following the Civil War and became an official holiday in 1971.

Memorial Day is also an opportunity to work on fun Memorial Day activities. Children and adults with special needs lean best when using a multi-sensory approach. This helps to stimulate learning and engage individuals on various levels of learning.

The activities and lessons that I have chosen focus on visual and tactile stimulation and includes both math and reading activities. The craft activities work to improve fine motor skills.

 

American flag on a pencil craft- Printable templates

Craft stick flag– U.S. flag made from craft sticks

Free Memorial Day packs- packets includes clip cards, word problems, fill in and missing numbers

Patriotic Pinwheel– Craft easy to make pinwheel

USA Wreath– Simple red, white and blue wreath made out of construction paper.

 

 

Cystic Fibrosis Awareness Month

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According to the Cystic Fibrosis Foundation, cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe overtime. It is a life-threatening disorder that damages the lungs and digestive system. A thick mucus can block the lungs and the pancreas.

In the United States, about 30,000 people are affected by the disease. It is estimated that more than 70,000 people worldwide are living with cystic fibrosis. 1 in every 20 Americans is an unaffected carrier of an abnormal CE gene.

Wikipedia

Common symptoms of cystic fibrosis include:

  • Salty-tasting skin
  • Persistent coughing
  • Shortness of breath
  • Wheezing
  • Poor weight gain in spite of excessive appetite
  • Greasy, bulky stools
  • Repeated lung infections
  • Muscle and joint pain
  • Sinus infections.

Cystic Fibrosis does not affect any cognitive or learning abilities. However, the student may need modifications and supports due to the disease. Teachers with students with cystic fibrosis should be knowledgeable about the disease.

Williams Syndrome and Teaching Strategies

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Williams Syndrome also known as Williams-Beuren syndrome was discovered in 1961 by J.C.P. Williams, a Cardiologist from New Zealand. Williams Syndrome is a rare disorder with a prevalence of in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Williams syndrome symptoms include heart problems, low birth weight, l problems and developmental delays. 75 are diagnosed with mile to moderate intellectual disabilities or a learning disability.

Click here to download PDF article

Physical characteristics include:

Musculoskeletal

Almond shape eyes

Broad forehead

long neck

Longer upper lip

Puffiness around the eyes

sloping shoulders

Small chin

Small upturned nose

Wide mouth

Learning Characteristics

  • ADHD
  • Enjoys music
  • Developmental delay
  • Excellent long-term memory
  • Learning disability
  • Poor fine motor skills
  • Seizures
  • Tactile defensiveness

Teaching Strategies

Students with Mild intellectual disabilities will have difficulty with abstract thinking, executive functioning including planning, prioritizing, and cognitive flexibility. According to the Williams Syndrome Association Website, Children with Williams Syndrome face challenges with processing non-verbal information and displays difficulty with attention to detail.

Strategies should include:

  • Using short sentences
  • Repeat directions
  • Break task into small steps
  • Use concrete examples when introducing new words or concepts.
  • Teach one concept at a time
  • Use a multisensory approach which will help to stimulate learning
  • Utilize visual learning style including the use of flash cars, pictures, images, handouts and colors.

Reference

Williams Syndrome Association

Developmental Disability Facts and Statistics

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Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

Click here to download PDF Format

  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

 

Resources

National Institute of Health

15 Teaching Strategy Resources for Students With Hearing Impairments

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Accommodations for students with hearing loss

Five tips for teachers of students with hearing impairments

How to teach hearing impaired students: Strategies for success

Inclusive teaching: deaf and hearing impaired

Instructional strategies for students who are deaf or hard of hearing

Modern teaching techniques for deaf and hard of hearing students

Strategies for hearing impaired students

Suggested teaching strategies

Teaching a child with hearing loss

Teaching hearing impaired children

Teaching strategies for deaf and hearing impaired

Teaching strategies for hearing impaired students

Tips for teachers

Tips for teaching a preschooler with hearing loss

Visual teaching strategies for students who are deaf or hard of hearing

25 Resources on 504 Accommodations and Modifications

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Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education (Edefines a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.  

5 important classroom accommodations for children with autism

12 accommodations and modifications for dyslexic children in public school

20 modifications for students with autism

21 school accommodations available for children with special needs

504 accommodation checklist

504 plan: ADHD accommodations to manage ADHD symptoms at school

504 plan templates

A 504 plan for those with dyslexia

A parents guide to section 504

504 Education Plans

504 Plan: What is it?

Accommodations and supports for school-age students with autism

Accommodations for ADHD students K-12 in the classroom

Accommodations for students with learning disabilities

Classroom accommodations for ADHD

Classroom accommodations for dyslexic students

Classroom accommodations for students with epilepsy

Developing 504 Classroom accommodation plans

Dyslexia accommodations: How to know what your child needs

Dyslexia and accommodations- ADA guidelines for school and work

Examples of accommodations and modifications

Modification for students with Down syndrome

Section 504 and Discrimination

Section 504: sample accommodations and modifications

What are school accommodations and modifications for students with Asperger’s?

15 Resources on Cerebral Palsy and Adulthood

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Cerebral palsy is a condition caused by damage to the specific areas of the brain. Cerebral palsy refers to the brain and palsy to muscle weakness. Cerebral palsy is a syndrome of motor impairment with posture and movement disorder. It is a non-progressive disorder, however, as a person begins to age, muscle and skeletal problems begin to worsen resulting in more pain, discomfort and limited mobility. Due to muscle flexibility, strength and endurance issues, there is a greater risk of falls and injuries. The following articles includes information on understanding how aging and adulthood affect people with cerebral palsy.

5 common challenges for adults with cerebral palsy- Made For Movement Blog

Adults and cerebral palsy– Cerebral Palsy Organization

Adults with Cerebral Palsy- Cerebral Palsy Foundation

Aging with Cerebral Palsy and Chronic Pain– The Mighty

Care of adults with cerebral palsy-American Academy for Cerebral Palsy and Developmental Medicine

Cerebral Palsy and aging– Developmental Medicine and Child Neurology

Cerebral palsy and transitioning to adulthood-Cerebral Palsy Alliance

Cerebral Palsy effects through lifespan-Physiopedia

Cerebral Palsy in Adulthood– Everyday Health

Cerebral Palsy patients provide rare insight into aging– Cerebral Palsy News Today

Cerebral palsy symptoms in Adulthood- Healthfully

Living as an adult with cerebral palsy– Healthline

Living with cerebral palsy as an adult– WebMD

Progression and Correction of Deformities in Adult with Cerebral Palsy-ACNR

The good, the bad, and the ugly facts about adult cerebral palsy-Karen Pape

25 Developmental Disability Links and Resources You Should Know About

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March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobility-ability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.

22q11.2 Deletion Syndrome

27 things to know about Fragile X Syndrome

ADHD- facts and statistics

Angelman Syndrome

Angelman syndrome resources

Cri Du Chat Resources

Developmental disability acronyms you should know 

Developmental disability awareness ribbons

Down syndrome-facts and statistics

Down syndrome timeline

Duchenne Muscular Dystrophy

Early Intervention- Resources and Information

Edward Syndrome Resources

Global developmental delays

Intellectual Disability Resources

Over 30 online resources on Rett syndrome

Pervasive DD-NOS

Prader Willi Syndrome Resources

Resources for teaching students with Down syndrome

Ring Chromosome 22 Resources

Teaching self-regulation and autism spectrum disorder

Things to know about Angelman Syndrome

Turner Syndrome Characteristics

What is Prader Willi Syndrome?

William-Beuren Syndrome Resources

Intellectual Disabilities And Epilepsy

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According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and affects people of all ages. In fact, 1 in 26 people have seizures and while people who are diagnosed with epilepsy may have no other problems, this is not the case for children and adults with an intellectual and developmental disability where the rates are much higher.

Click here to download PDF format

It is estimated that 30% of children with epilepsy also have another type of disability. Some studies show that children with an intellectual disability and cerebral palsy, had a 35% chance of developing epilepsy, children with an intellectual disability alone had an 8% chance and children with a brain injury occurring after birth stood a 75% chance of developing epilepsy. Statistically, the risky of a child with a developmental disability experiencing an unprovoked seizure by age 5 is 4 times likely than the general population. It is estimated 1.8% of U.S. adults have epilepsy compared to 22% among people with intellectual disabilities.

People with intellectual disabilities tend to also have worse prognosis with adults having a higher rate of death including Sudden Unexplained Death In Epilepsy (SUDEP).

Epilepsy

Epilepsy is a chronic disorder with recurrent unprovoked seizures. According tot he National Institute of Neurological Disorders and Stroke (NINDS), epilepsys are a spectrum of brain disorders ranging from severe, life-threatening to ones that are more benign. The International League Against Epilepsy created a new definition of epilepsy. A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two provoked (or reflex) seizures occurring greater than 24 hours apart.
  2. One Unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome

A seizure is defined as an event and epilepsy is the disease involving recurrent unprovoked seizures.

Intellectual Disability

According to DSM-5, an intellectual disability is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual social, and practical domains including deficits in intellectual functions such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experiences.  The severity levels range from mild to profound.

Although there is a high relationship between epilepsy and an intellectual disability, little research has been conducted on safe prescribing practices of an antiepileptic drugs for people with intellectual disabilities. What is known about epilepsy and an intellectual disability is that more severe disabilities are typically caused by damage to the brain

Why is it important to discuss?

Given the large number of people with an intellectual disability and epilepsy, treatment may be more complicated due to multiple impairments including people with a diagnosis of autism, intellectual disability and epilepsy. More research needs to occur which will help to reduce morbidity rates and help to develop accurate guidelines.

ISP Terms To Know

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Click here to download a copy to print

You are probably familiar with IEP’s if your child or family member attend a public school here in the United States. For some people with a developmental disability, the next step may be attending a day habilitation program where adults with developmental disabilities receive Medicaid Waiver Services and has what is called an Individualized Service Plan (ISP).  If you are new the ISP process, the following terms that you will hear often before, during and after meetings.

Assessments. Serves to develop a body of information about an individual’s desires and goals his/her capabilities in areas in need of learning and skill development and the experiences or supports that will promote achievement of those goals.

Background/History. Provides an overview of the life experiences of the person and family.

Goals/Service. includes person-centered supports to enhance opportunities for individuals to make choices that increase their quality of life. An example would be a goal of increasing money or budgeting skills.

Interest and Activities. Describes personal preferences, gifts and interests, as well as conditions to avoid.

ISP Plan. A living document that provides details about what is important to an individual with developmental disabilities. It reflects a person-centered planning process.

Natural Supports. Personal associations and relationships developed in the community that enhance the quality and security of the life for people including family and friends.

Provider Program. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. Providers may offer a variety of services and supports.

Habilitation Service. Services that help you keep, learn or improve skills and functioning for daily living skills

Individual Service Environment. Provides self-directed, individualized assistance and support to individuals living on their own, either alone or with roommates in their own home or apartment.

ISP Meeting

ISP Revision. Revisions and changes to the ISP can occur when an individual experiences a change in need throughout the year and must be reflected in the ISP. It is not necessary to wait annually to make the revisions. The date of the revisions should be reflected in the ISP.

HCBS Waiver Services.  A Home and Community-Based Service (HCBS) Waiver is a Medicaid program designed to meet the needs of children and adults who prefer to get long-term care services in their home or community, rather than in an institutional setting.

Medicaid. is a jointly funded, Federal-State health insurance program for low-income and people in need including children and adults with disabilities. It is a government insurance for people whose income and resources are insufficient to pay for healthcare. A Medicaid number is needed for an ISP and is used to bill services.

Person-Centered Planning (PCP). An ongoing problem-solving process used to help people with disabilities plan for their future. It allows individuals to be engaged in the decision making process about their options, preferences and values.

Protective Oversight. is a documented and approved plan used for the sole purpose of enhancing individual safety. It list the key activities that affect health and wellness of an individual.

Safeguards. a measure taken to protect the individual from harm by providing information on how it will be addressed. An example is fire evacuation. If a person is not able to evacuate independently from a fire emergency, protections are put in place to ensure his or her safety.

Service Provider. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. The provider may offer a variety of services and supports.

Value Outcome. Statements that represent what is important to the person. It may include what the individual needs, wants to change or would like to maintain in his/her life. Outcomes are developed through the ISP process.

 

Identifying Street Signs Worksheet

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This is an introduction to identifying street signs for children and young adults learning how to cross the street safely. The worksheet includes signs needed in teaching street crossing safety.

Learning Objectives:

  • Will match the traffic sign correctly
  • Will identify the traffic sign correctly
  • Will name the traffic sign correctly

Material Needed:

Traffic sign worksheet
laminated (optional)
laminator paper(optional)
Scissors

Instructions:

  1. Once you have printed the worksheet, cut the individual traffic signs and laminate.
  2. Explain each traffic sign and have the individual repeat.
  3. Once the signs are separated, mix them up and have the individual point to the correct ones.
  4. Have the individual state the traffic signs correctly and match

Traffic Signs Worksheet_ID Signs

 

Adults with Special Needs and Housing Options

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Click here to download PDF article

For many years, most people with developmental disability had only the option of living at home with family or become institutionalized. Today, people are given many more housing options. Although there is still a challenge in finding the right fit, home opportunities are more available. The following are housing options for adults with special needs.

Living with parents or family

Adults with special needs may choose to live at home with their families as long as they can. In some cases, adults with developmental disabilities continue to live at home after their parent’s death by hiring a Personal care Attendant (PCA). A PCA is hired by a person with a disability to assist with his or her personal care routine. People are eligible for this service is they qualify for Medicaid if they have a severe, chronic disability and requires physical assistance for personal care.

Section 811

The Section 811 program allows persons with disabilities to live as independently as possible in the community by subsidizing rental housing opportunities which provide access to appropriate supportive services. Serves extremely low-income individuals with serious and long-term disabilities, including physical or developmental disabilities as well as mental illness.

  • Is designed to accommodate the special needs of such persons;
  • Makes available supportive services that address the individual health, mental health and other needs of such persons; and
  • Promotes and facilitates community integration for people with significant and long-term disabilities.”

Group Homes

Residential home which provides 24-hour support services in a group setting. Oversight, training and supervision are provided by staff employed by a provider agency. This type of facility is provided to those with significant health and/or safety needs.

Individual Supports

Are limited to 3 or fewer individuals and provide need-based support and services for those living in their own homes or apartments, but do not require 24-hour staff support and supervision.

Assisted living communities,

  • also referred to as supported care facilities, provide care to older adults who are unable to live independently, often needing assistance with ADLs. Most offer private and semi-private apartment-style living often containing a living area and kitchenette.

 

Guardianship

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When an individual with a developmental disability becomes an adult, Guardianship is something you should consider. In many States, the law will see the individual as an adult able to make decisions on their own. If you have a child with a disability who many never have the ability to make legal decisions on their own, the following information are links on guardianship and what you need to know about them.

Does my child need a guardianship?– Special Needs Alliance

Guardianship– Cincinnati Children’s

Guardianship: A basic understanding for parents– Parenting Special Needs

Guardianship and adult children with developmental disabilities-ICHE

Legal guardianship and your adult child with disabilities– A day in our shoes

My child with a disability is an adult- Now what? – Parenting NH

Special needs children turning 18 years old– Today’s Caregiver

Understanding guardianship for adults with special needs– Protected Tomorrows

When your child turns 18: A guide to special needs guardianship– Friendship Circle

Guardianship- State Specific Requirements

Each State has it own requirements for Guardianship, click on your State below to find more information:

Alabama

Alaska

Arkansas

Arizona

California

Colorado

Connecticut

Delaware

District of Columbia

Florida

Georgia

Hawaii

Idaho

Illinois

Indiana

Iowa

Kansas

Louisiana

Maine

Maryland

Massachusetts

Michigan

Minnesota

Mississippi

Montana

Nebraska

Nevada

New Hampshire

New Jersey

New Mexico

New York

North Carolina

North Dakota

Ohio

Oklahoma

Oregon

Pennsylvania 

Rhode Island

South Carolina

South Dakota

Tennessee 

Texas

Utah

Vermont

Virginia

Washington

West Virginia

Wisconsin

Wyoming

What is a Generalized Seizure?

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Click here to download PDF article

A generalized seizure, formally known as a gran mal seizure affects both sides of the brain, and starts in all parts of the brain at the same time. About 25 percent of people with epilepsy have generalized seizures. It affects all ages, socioeconomic and racial groups.

There are 4 phases of a generalized seizure:

  1. Prodromal. This is the first phase where an early sign may include a group of symptoms hours or days before the seizure including depression, difficulty concentrating, headaches, insomnia and mood changes.
  2. Aura. Typically, an aura occurs from a few seconds to a few minutes before the arrival of the seizure. Signs may include blurry vision, buzzing, ringing or an abdominal sensation.
  3. Tonic-Clonic. This is the phase where the whole body is affected. The body begins to stiffen and the person loses consciousness and falls. This is followed by a violent uncontrollable shaking. During this phase, the person may have difficulty breathing, an inability to swallow, may drool and begin to sweat.
  4. Postictal. Occurs at the end of the seizure, common signs include confusion, anxiety, depression, embarrassment, fear, memory loss, upset stomach and sleepiness.
There are 6 types of generalized seizures:
  1. Absence (Petit Mal). It occurs throughout the entire brain beginning and ending very quickly. The person becomes unconscious with a blank stare. It may appear the person is day dreaming.
  2. Tonic-Clonic. When the body stiffens and shakes. usually last 1 to 3 minutes.
  3. Clonic. When a person has a muscle spasm in the face, neck and arms may last several minutes.
  4. Tonic. The muscles in the arms, legs and trunk are affected. Usually last less than 20 seconds.
  5. Atonic. the muscles go limp and can cause a person to fall or head his or her head if they are standing.
  6. Myoclonic. Muscles suddenly jerk. The electrical impulses are strong enough to throw a person to the ground.
What Causes Epilepsy with Generalized Seizures?
Possible causes of epilepsy and seizures include:
  • genetics
  • a change in the structure of your brain
  • autism
  • an infections of the brain, such as meningitis or encephalitis
  • head trauma
  • a brain tumor
  • Alzheimer’s disease
  • a stroke, or a loss of blood flow to the brain resulting in brain cell death
  • congenital conditions, including Down syndrome or tuberous sclerosis

First Aid For Tonic Clonic Seizures:

Call 911 if:
  • The person has never had a seizure before.
  • the person has difficulty breathing or waking after the seizure.
  • The seizure lasts longer than 5 minutes.
  • The person has a seizure back-to back.
  • The person is injured during the seizure.
  • The person has an additional condition like diabetes, or heart disease.
Steps
  • Ease the person to the floor.
  • Turn the person gently onto the side (this will help the person breathe).
  • Clear the area around the person of anything hard or sharp
  • Put something soft and flat, like a folded jacket, under his or her head.
  • Loosen ties or anything around the neck including button on a shirt.
  • Time the seizure.
Familiarize Yourself With The Warning Signs 

Each person is different. Typically warning signs of a seizure may include:

  • Loss of consciousness
  • Stiffening of the body
  • Jerking of limbs
  • Slight twitching
  • A loss of awareness
Do Not:
  • Do not hold the person down or try to stop his or her movements.
  • Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
  • Do not try to give mouth-to-mouth breaths (CPR). People usually start breathing again on their own after a seizure.
  • Do not offer the person water or food until he or she is fully alert.

After the seizure:

After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.

Don’t try to stop the person from wandering unless he or she is in danger.

Don’t shake the person or shout.

Stay with the person until he or she is completely alert.

 

Resources

Epilepsy Ontario

Epilepsy Talk

Healthline

University of Chicago Medicine

WebMD

2019 Disability Awareness Month and Observance Calendar

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Annual awareness observances are sponsored by federal, health and non-profit organizations. Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seem to grow. Awareness activities range from one day to a month.
Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets. Since it is still early in the year, some of the campaigns still have 2018 campaigns on their websites. I will add new information once the changes are up on the websites.

January

National Birth  Defects Month

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

February

Turner Syndrome Awareness Month

February 15- International Angelman Day

February 28- Rare Disease Day

March

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April 2- World Autism Awareness Day 

May

Better Hearing and Speech Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

May 1- Global Developmental Delay Day

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

May 8-14- Brain Injury Awareness Week

June

Aphasia Awareness Month

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

July

July 14- Disability Pride Parade (NY)

July 14- Disability Awareness Day (UK)

July 22- National Fragile X Awareness Day

September

Chiari Awareness Month

Craniofacial Acceptance Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

October

ADHD Awareness Month

Disability History Awareness Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October 6- World Cerebral Palsy Day

October 15- White Cane Awareness Day

October 13-19 Invisible Disabilities Week

October 13-19 International OCD Awareness Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

December

December 3- International Day of Persons with Disabilities

December 1-7 Infantile Spasm Awareness Week

10 Easy Steps of Audit and Survey Readiness

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Annual audits and surveys can be very intimidating. A group of state surveyors showing up at the residence or day program to review services given to individuals with developmental disabilities.

What is the purpose of the audit?

In each state, Immediate Care Facilities (ICF), Immediate Residential Alternatives (IRAs), Waiver services or privately operated programs are funded through Medicaid Assistance Annually State agencies. Annual surveys serve the purpose of recertifying facilities and to make any further recommendations. Overall, the goal is to ensure the quality of for the individuals receiving services.

What are surveyors looking for?

In recent years, the focus is more on ensuring facilities that provide services and supports to individuals with intellectual and developmental disabilities are providing opportunities for individual choices including person-centered planning, community inclusion and choice-making. Typically, State auditors will review the Individualized service Plan (ISP) document to determine it the ISP is both current and accurate.

Audit Preparation

State Auditors generally spend some time talking to staff. They may ask you questions relating to the person’s plan. The questions are often generated after they have read the individual’s ISP plan. The questions that are asked are more than likely things that you do well everyday. here are 10 easy steps as you prepare for the auditing process:

  1. Knowledge of Individuals. know each person’s plan including person-centered planning plan, medical needs, preferences and habilitation plan.
  2. Cleanliness. Make sure the environment is neat and orderly.
  3. Privacy. Remember to give the person privacy when needed.
  4. Choice. Offer choices throughout activities whenever possible. The auditors may ask you how do you teach choice-making.
  5. Tone. Always speak in a positive and appropriate tone of voice.
  6. Small groups. Work in small groups whenever possible. Incorporate variety  of choice during activities.
  7. Community activities. Ensure individuals are able to make choices in activities in the community and community inclusion opportunities are available.
  8. Universal Precaution Guidelines. Know the precautions and follow them. Remember to change gloves when moving from one individual to the next.
  9. Active Programming. The auditors may ask questions related to what they have read in the individuals ISP or CFA (Comprehensive Functional Assessment).
  10. Safeguards. make sure you are able to describe the individual’s supervision needs.

Remember: Demonstrate your self-confidence, because you are good at what you do!

What is Lowe Syndrome?

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Lowe Syndrome also known as Oculocerebrorenal Syndrome is a rare genetic disorder that affects the eyes, brain and kidneys. It has a prevalence of 1 in 500,000 and mainly affects males.

Click here to download PDF version

Signs and Symptoms
  • Congenital cataracts
  • eye abnormalities and eye disease
  • glaucoma
  • kidney abnormalities (Renal Fanconi Syndrome)
  • dehydration
  • abnormal acidic blood
  • progressive kidney problems
  • feeding problems
  • bone abnormalities
  • scoliosis
  • weak or low muscle tone (hypotonia)
  • joint problems
  • developmental delays including motor skills
  • short stature
  • intellectual disability
  • seizure
  • behavioral issues

Children and adults diagnosed with children and adults may also show the following signs and symptoms due to an intellectual disability:

  • decrease learning ability
  • delays in crawling
  • delays in sitting up
  • difficulty solving problems
  • lack of curiosity
  • language and speech delays
  • poor memory
  • behavior problems
Teaching Strategies

The following strategies will help when teaching a child or an adult diagnosed with Lowe Syndrome:

  • Use short and simple sentences to ensure understanding
  • Repeat directions
  • Teach specific skills when possible
  • Use strategies such as chunking, backwards shaping, forward shaping and role modeling.
  • Use concrete information
  • Provide immediate feedback

Image thanks to Robert Thomson on Flickr.com (creative commons)

Resources

National Organization for Rare Disorders

Genetics Home Reference

Dove Med

Wikipedia

Teaching Strategies For Students With A Nonverbal Learning Disorder

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Nonverbal Learning Disorder is a disorder you may or nay not heard of. It shares similar characteristics to autism such as the challenge in reading body language but is also quite different. By learning the signs and symptoms of nonverbal learning disorder, the better chance you have in using effective teaching strategies.

Nonverbal learning disorder is defines as a person who has difficulty in interpreting and understanding non verbal cues in the environment If 93% of how we communicate is nonverbal, a person with nonverbal learning disorder is only getting 7% of daily communication.

Dr. Byron P. Rouke of the University of Windsor developed the following criteria to assess nonverbal learning disorder:

  1. Perceptual deficits usually on the left side of the body. The child has difficulty understanding or perceiving information through the skin of both hands but the left hand has more difficulty than the right.
  2. Tends to be clumsy
  3. Difficulty with visual-spatial organizational skills. Finds it difficult to organize notes.
  4. Difficulty when encountering new information.
  5. Difficulty in knowing what is expected of you and hard to see the bigger picture
  6. Distort sense of time. Time is abstract and non-linear
  7. Well-developed, rote and verbal capacity
  8. Repetitive way of speaking
Signs and Symptoms
  • Excellent vocabulary and verbal expression
  • Excellent memory skills
  • unable to see the bigger picture
  • Poor motor and coordination skills
  • Difficulty with reading
  • Difficulty with math reading problems
  • Fear of new situations
  • May have symptoms of anxiety, depression
  • Misreads body language
  • Well-developed vocabulary
  • Better auditory processing skills than visual processing skills
  • Focus on details

Teaching Strategies For Parents and Teachers
  • Give assignments in chunks
  • Give constructive feedback
  • Create a daily class routine and stick to them
  • Write the class schedule on the board
  • Provide several verbal cues before transition
  • Give the student time to preview and prepare for new activities such as group projects
  • Minimize transitions
  • Offer added verbal explanations when the student or child seems confused
  • Teach in sequential steps
References

Rondalyn Varney Whitney/OTR, Nonverbal learning disorder: Understanding and coping with NLD and Aspergers: What parents and teachers need to know (2008)

Woliver, Robbie (2008) Alphabet Kids: From ADD to Zellwer Syndrome.

Learning Disabilities of America

Understood

Epilepsy and Autism: What You Need To Know

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Studies show that epilepsy are more common in individuals with autism than the general population. Studies show that in some cases, 20% of people diagnosed with autism also have an epilepsy disorder. Other studies indicate epilepsy prevalence estimates between 5% to 46%.

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

Epilepsy is a brain disorder which occurs when neurons in the brain experience a brief interruption causing a seizure to occur. Seizures vary from mild to severe and affects over 3 million Americans. There are different types of seizures:

  • Generalized Tonic/Clonic- A seizures where the whole brain is affected.
  • Absence Seizures- Generally start without any warnings. It affects children and last only for a few seconds.
  • Myoclonic Seizures- Are abrupt jerks of the muscle groups which originate from the spine.
  • Partial Seizures- The person may look as though he or she is in a trance.

There are many unanswered questions as to why epilepsy is more common in people with autism. There is some evidence the common underlying cause may be both are related to genetic and environmental causes and are both related to some type of brain disorder. Evidence does shoe however individuals with autism and epilepsy have worse behavioral and social outcomes than individuals diagnosed with autism only including issues with motor and daily living skills.

Signs for parents to look out for
  • May be difficult to determine especially in children diagnosed with severe autism spectrum disorder. Red flags include, staring episodes, stiffening of the body and shaking movements.
  • A medical evaluation will include brain imaging and an electroencephalogram (EEG).
Teaching Strategies

If you are an educator, be aware that after a seizure, the student will become tired. Allow the student an opportunity to rest.

Reference

Epilepsy Foundation

Medical News Today: Epilepsy and autism: Is there a link?

Neurologist Disorder Treatment. Epilepsy in patients with autism: Links, risks and treatment challenges. Frank McBesag- Published online 2017 Dec 18

Synapse- Autistic Spectrum Disorder Factsheet

 

Resources For Teaching Students with Down Syndrome

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Down syndrome (Trisomy 21) is a chromosomal disorder due to 3 copies of chromosome 21, causing a number of developmental delays, medical and physical disabilities. Learning is one of the areas that is affected by the disorder. Children born with Down syndrome typically have delays in the area of gross and fine motor skills, thinking, short attention span, speech and language difficulties and sequencing. The following links and resources include information on tips and strategies for teaching children with Down syndrome for both parents and teachers.

5 tips for including students with Down syndrome in a general education classroom

10 things teachers should know about Down syndrome

Classroom strategies for Down syndrome students

Five instructional strategies for children with Down syndrome

Modifications for students with Down syndrome

Modifying your curriculum for individuals with Down syndrome

Quick tips for teaching students with Down syndrome in general education classes

Strategies for learning and teaching

Supporting the student with Down syndrome in your classroom

Teaching children with Down syndrome- 10 tips from a former teacher

Teaching children with Down syndrome to read

Teaching students with Down syndrome

Teaching tips: Special education children with Down syndrome

Tips for teaching students with Down syndrome

What students with Down syndrome want teachers to know

 

October is Down Syndrome Awareness Month

Teaching Children With Down Syndrome

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10 things teachers should know about Down syndrome

Down syndrome-Classroom strategies

Five instructional strategies for children with Down syndrome

Homeschooling a child with Down syndrome

Including and accommodating students with Down syndrome

Inclusive education for individuals with Down syndrome

Quick tips for teaching students with Down syndrome

Strategies for Learning and Teaching

Supporting children with Down syndrome in primary school

Supporting the student with Down syndrome in your classroom

Teaching numbers to children with Down syndrome

Teaching students with Down syndrome

Tips for teaching students with Down syndrome

What students with Down syndrome want teachers to know

Down Syndrome Timeline

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PDF version of article

According to the CDC, Down Syndrome is the most common chromosomal disorder. Each year 6,000 babies are born with Down syndrome which is estimated to be about 1 in every 700 babies. Here is a timeline showing Down syndrome progression over the years:

Down Syndrome Timeline

1866- British Physician John Langdon Down, first described the genetic disorder as “Mongoloid” based on patients similar characteristics.

1876- An initial association between premature “senility” and Down syndrome is discovered.

1929- Life expectancy is approximately 9 years of age

1932- Abnormal distribution of chromosomes was first suggested as the cause of Down syndrome.

1946- Life expectancy is approximately 12 years of age.

1948- Evidence between Alzheimer’s and Down syndrome is first published.

1959- Dr. Jerome Lejeune discovered Down syndrome is the result of an abnormality in the chromosomes.

1959- The term Trisomy 21 is used on the medical community to describe Down syndrome.

1960- Researchers discover a type of trisomy called translocation

1961- Researchers discover a type pf trisomy called Mosaicism. 

1965- The World Health Organization (WHO) accepts the name Down syndrome as the standard name to use.

1970- Life expectancy is approximately 25 years of age.

1976- Amniocentesis comes into common use in the United States

1987- A gene associated with Alzheimer disease is discovered on Chromosome 21

1994- CDC announces he prevalence of Down syndrome from 1893-1990 was 1 in 1087.

1997- Life expectancy is approximately 49 years of age.

2006- Life expectancy is approximately 60 years of age

Reference

Centers for Disease Control and Prevention

Global Down Syndrome Foundation

How To Organize Clothing In A Residential Setting

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Organizing clothes in a regular household can be challenging. Imagine striving to clean, organize and store clothes when it is 12 people living under one roof! This can often lead to clothing getting mixed up causing further confusion.

There are a number of steps you can take that will help to alleviate this often challenging task:

  1. Create an inventory list for each person. This list should include a tri-annual schedule when clothing are sorted. Choose a time in the spring, fall and winter when to sort out clothing. An inventory list should also list the types of clothing and the number of items for each. Below is an example of an inventory.  You will find a free template here: clothing_inventory
  2. Spend a day with each person and go through the closet taking everything out. Sort the clothing and throw out anything that is torn or broken. People may have a favorite item they might like to wear. Look to see if it can get either fixed or replaced
  3. Once clothing is organized, choose a day with the person and determine a laundry day. While it can be easier to try to do wash clothing for several people at a time, you risk the chance of mixing up clothing.
  4. Always make sure if possible, the person participates as much as they can in this household task. It encourages independence and individuality at the same time.

I like to hear tips you use for clothing organizing for multiple people.

 

 

Global Developmental Delays

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Global developmental delays describes when children do not meet their developmental milestones. Generally from the age of 2 months to 5 years old. Although each child is different in their development, milestones are established in order to determine functional skills on age specific tasks.

Delays can occur in the following area:

Gross motor- Involves the use of larges muscle groups such as walking, crawling and standing. May impact children diagnosed with cerebral palsy.

Fine Motor- Small movement in the fingers used for drawing, painting, buttoning, coloring, and shoe tying.

Speech and language delay- A delay in language may be due to motor-oral problems.

Cognitive- Delays can be caused by, infections, ,metabolic, toxic, trauma, and chromosomal abnormalities (Down syndrome, Turner syndrome, etc.)

Social/Emotional Skills- Shows signs of delay in responding and interacting with other people. Common cause may be autism spectrum disorder

The following articles provide information on understanding global developmental delays:

6 things I’d tell the parent who just heard the word ‘Global Developmental Delay’

Causes and symptoms of developmental delays

Developmental delays and disabilities

Global Developmental Delay

How a child develops

Recognizing developmental delays in your child

Types of developmental delay in children

Understanding developmental delays

What causes developmental delay?

What you need to know about developmental delays

30 Resources for World Down Syndrome Day

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Today is World Down Syndrome Day. A campaign designed to create a single voice for advocating for the rights, inclusion and well-being of people with Down Syndrome. Resources on this page include information on inspiring articles and facts on people with Down Syndrome.

Post From Special Needs Resource Blog:

20 Facts You Should Know About Down Syndrome

Down Syndrome Characteristics

Facts About Down Syndrome (Infographic)

Mosaic Down Syndrome Resources

Signs of Autism and Down Syndrome

Top Books On Down Syndrome For Parents and Professionals

Down Syndrome Organizations
Band of Angels: http://www.bandofangels.com/-

Established in 1994, Band of Angels provides support for individuals with Down Syndrome and their families. The website offers links on Down Syndrome support groups and a litany of topics including, adoption, autism and education.

Down Syndrome International https://www.ds-int.org/

A U.K. based international organization comprising a membership of individuals and organizations from all over the world. Disseminates information on Down Syndrome including prenatal diagnosis, early intervention, education, medical, health, employment, aging and human rights. Down Syndrome International also promoted World Down Syndrome Day (March 21) as a day dedicated to people with Down Syndrome.

Global Down Syndrome http://www.globaldownsyndrome.org/

Provides fundraising, education and governmental advocacy for the Linda Crnic Institute for Down Syndrome. Resources available on the website include, information on research, medical care and facts on Down Syndrome.

International Down Syndrome Coalition: http://theidsc.org/

Dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. Offers support to parents who are new to the Down syndrome diagnosis by connecting parents to each other.

National Association for Down Syndrome http://www.nads.org/

NADS is the oldest organization in the United States serving individuals with Down syndrome and their families. Also provides families with information and resources that will enable them to access appropriate services and educates the public about Down syndrome.

National Down Syndrome Congress http://www.ndsccenter.org/

The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

National Down Syndrome Society http://www.ndss.org/

NDSS provides resources to new and expectant parents and offers a toll-free helpline and email services. NDSS also focuses on transitions , wellness and education

 

The following are articles highlighting stories around the country on Down syndrome:

Clemson Student With Down Syndrome To Compete In Pageant

Couple with Down Syndrome Celebrate 22 Years of Marriage

Displaying The Myths of Down’s Syndrome

First Person With Down Syndrome Finishes Local Half-Marathon

Funny Down Syndrome Ad Will Change The Way You Feel about “Special Needs”

Gerber Baby 2018: Lucas Warren is the company’s first spokesbaby with Down Syndrome

Get To Know Madeline Stuart, The World’s First Supermodel With Down Syndrome

Swimmers with Down Syndrome Find Empowerment in the Pool

Walgreens Features Model With Down Syndrome

Woman With Down Syndrome Starts Her Own Bakery

Inspiring Video’s

What is a Developmental Disability?

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March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobilityability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

Here are some examples of a developmental disability:

Does everyone with a disability also have a developmental disability?

The answer is no. there are people with disabilities such as epilepsy and cerebral palsy simply have a disability based on the criteria listed above. However, many people with developmental disabilities quite often have a combination of disabilities. For example a child with autism may also have seizures and an intellectual disability or an adult may have cerebral palsy, intellectual disability and epilepsy. In addition there are many people in the spectrum of autism who also have ADHD and so forth.

So what’s the difference between an intellectual disability and a developmental disability?

A person with an intellectual disability falls under the category of a developmental disability meaning you can have an intellectual disability and a developmental disability. check here for the definition of an intellectual disability, you will see they are quite similar. Below is an infographic created by Centers on Disease Control:

An Infographic on Developmental Disabilities.

 

 

20 Task Box Resources To Use In Your Classroom or Home

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Task boxes (also known as work boxes) are structured work systems created by Division TEACCH t the University of North Carolina Chapel Hill. This system allows the student to work independently on a task for a specific time in a supportive environment.  Task boxes are now used for students with a variety of disabilities including students required pervasive levels of support.

 

There are 3 types of task boxes: stacking- Helps with eye-hand coordination and fine motor skills; sorting- may break activities by size, color, texture, shape and flavor and fine motor- strengthens the smaller movement in the wrists, hands and fingers.

The following sites include information on how to set up a task box system in your classroom or in your home.

How I Set Up My Task Box System ( Delightfully Dedicated)

How to Set Up An Independent Workbox (Breezy Special Ed)

How to Start a Task Box System (Autism Adventures)

Task Box Set Up- (Autism Adventures)

Websites that will give you ideas on creating task boxes, and the material needed.

Autism Classroom Workbox System (Teaching Special Thinkers)

Fine Motor Morning Work Bins (Differentiated Kindergarten)

Assembly Work Task (Autism Classroom News and Resources)

Free Math Printable Task Box for Special Education ( My Creative Inclusion)

Higher Level Academics in Task Boxes (Mrs. P’s Specialties)

How I Use Workboxes in My Classroom (Creating and Teaching)

Pre-Vocational Work Boxes (SPED Adventures)

Quick and Easy Task Box Ideas (Little Miss Kim’s Class)

Task Boxes: A Hands On Approach to Life Skills (Therablog)

Task Boxes for Autistic Children (Love to Know)

Structured Work Boxes (University of Mary Washington)

Ways to Up the Ante in Your Work Task System (The Autism Vault)

Winter Task Boxes (You Aut-aKnow)

Work Boxes in Autism Classrooms (Noodle Nook)

Work Box Task Ideas (The Autism Helper)

Work Task (Breezy Special Ed)

 

2018 Disability Awareness Month and Observances

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Annual awareness observances are sponsored by federal, health and non-profit organizations. Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seem to grow. Awareness activities range from one day to a month.
Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets. Since it is still early in the year, some of the campaigns still have 2017 campaigns on their websites. I will add new information once the changes are up on the websites.

January

National Birth  Defects Month

January 4- World Braille Day

January 24- Moebius Syndrome Awareness Day

February

February 15- International Angelman Day

February 28- Rare Disease Day

March

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 20- Brain Injury Awareness Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April 2- World Autism Awareness Day 

May

Better Hearing and Speech Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

May 1- Global Developmental Delay Day

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

May 8-14- Brain Injury Awareness Week

June

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

July

July 15- Disability Pride Parade (NY)

July 15- Disability Awareness Day (UK)

July 22- National Fragile X Awareness Day

September

Craniofacial Acceptance Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

October

ADHD Awareness Month

Down Syndrome Awareness Month

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October 6- World Cerebral Palsy Day

October 14-20 Invisible Disabilities Week

OCD Awareness Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

December

December 3- International Day of Persons with Disabilities

 

 

 

Helping Children Understand Person First Language

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Pubished by: ASD
Written By: Nicole Dezarn

Person first language is an important ethical matter often discussed in the field of special education and disability advocacy. The idea that the important descriptor for a person is not their disability but that the disability is something that the person has is fundamental in framing the mindset that having a disability doesn’t mean that a person is less or incapable of success. It can be challenging enough to broach this subject with adults but how do we help children to understand what person first language means and why it is so important? I felt it might be helpful to share an approach with which I have had success. Click here to read the rest of the story

Choking Prevention for People with Developmental Disabilities

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Children and adults with developmental disabilities have a higher risk of choking compared to the general population.

Risk Factors Include:

Some medical conditions that increase a person’s risk of choking are:

  • Cerebral Palsy
  • Seizure disorders
  • Neurological and muscular disorders
  • Down Syndrome
  • Brain Injury
  • Muscular Dystrophy
  • Inability to swallow certain food textures and liquids
  • Medication side effects which decrease voluntary muscles
  • Dysphasia (difficulty swallowing)

Other contributing factors include:

Eat or drink too fast

Have poor posture when eating

Swallow non-edible objects (PICA)

The following foods put people at greater risk:

  • Hotdogs served whole
  • Hard candy
  • Popcorn
  • Sandwiches
  • Broccoli
  • Raw carrots
  • Nuts

Teaching Material on Choking

Arizona Department of Economic Security

Eunice Kennedy Shriver-Dysphasia, Aspiration and Choking

Ohio Department of Developmental Disabilities

New York State Choking Prevention Resources

Washington State Department of Social and Health Services

State Agencies Choking Alerts

Georgia Department of Behavioral Health and Developmental Disabilities

Minnesota Mental Health and Developmental Disabilities 

New Jersey Health and Safety Alert Choking

Autism and Wandering Resources (update)

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Studies show that nearly half of children with autism attempt to wander off or bolt from a safe supervised place (Autism Speaks). Children with Angleman Syndrome also tend to have an obsession with water and will tend to wander if water is nearby. The following resources includes wandering kits, articles and additional resources on the topic of wandering.

Click here to download a printed version of this article

What is Wandering?

When a person, who requires some level of supervision to be safe, leaves a supervised, safe space and/or the care of a responsible person and is expected to potential dangers such as traffic, open water (drowning), falling from a high place , hypothermia, heatstroke, dehydration.

Types of Wandering

  • Goal-Directed Wandering- wandering with the purpose of getting to something ( a place of obsession, water, etc.).
  • Non goal-directed wandering- Wandering with no purpose, random from one place to another.
  • Confusion Wandering-Wandering due to disorientation or confusion.
  • Bolting/fleeing- The act of suddenly running or bolding, usually to quickly get away from something, or in negative reaction to an event, anxiety or stress.
 Facts and Statistics
  • Roughly half, or 49%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.
  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number.
  • 32% of parents reported a “close call” with a possible drowning.
  • 40% of parents had suffered sleep disruption due to fear of elopement.
  • half of families with elopers report they never received advice or guidance about elopement from a professional.
Source: Interactive Autism Network research report: Elopement and wandering (2011)
Source: National Autism Association, Lethal Outcomes in ASD Wandering (2012)

Caregivers Information

Autism elopement and wandering kit for families (Parenting Chaos)

Big Red Safety Toolkit (National Autism Association)

28 page toolkit that provides information on preventing wandering. The toolkit includes the following information:

  • Caregiver checklist
  • Family wandering emergency plan
  • swimming lessons tool
  • Root-causes scenario and strategies tool
  • Caregivers log
  • How to get tracking technology in your town.

First Responder Resources

First Responder Checklist– A checklist for first responders developed by the National Autism Association

First Responder Notification Form

First Responder Tips

GPS Tracking Technology

The AngleSense Guardian Kit

  • Comes with a GPS device, embedded SIM card, customized wearables and a magnet key for parents $39.00 monthly service plan.

7 tracking devices to find a lost child with autism (Friendship Circle)

Articles

5 simple ways to prevent wandering in children with autism (Autism Parenting Magazine)

Autism and Wandering (SFGate)

Autism and Wandering: How ABA can help keep kids safe. (HuffPost Parents)

Teaching safety skills to children with autism (Our Crazy Adventures in Autismland)

The autism epidemic that can no longer be ignored (HuffPost Parents)

Wandering: A hazard for more than a third of kids with autism (U.S. News)

Wandering & Autism: Elopement within the classroom (Autism Classroom Blog)

Wandering & Autism: Students who flee, bolt, run and elope (Autism Classroom Blog)

Resources on Teaching Scissor Skills

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One of the ways to improve fine motor skills is helping children and adults develop cutting skills also help with pre-writing skills and pencil control. Below are resources that will help in developing and teaching scissor skills.

Cutting Skill Development

2 years- snips with scissors

2.5 years- Cuts across a 6-inch piece of paper

3.5 years- Cuts along a 6-inch line

4.5 years- Cuts out a circle

6-7 years- Cuts a variety of shapes and pictures.

Resources on Teaching Scissor Skills

5 easy ways to introduce scissor skills

How to teach a child to use scissors

How to use scissors

Scissor cutting skills: Why they are important

Teaching kids how to use scissors

Teaching preschoolers to use scissors

The importance of teaching your child how to use scissors

Tips for teaching scissor cutting skills

Practice Scissor Skills- The following links below include practicing cutting straight lines, curved lines and circles, zig-zag lines and mixed lines.

10-page scissor skills packet (Mama’s Learning Corner)- geared towards preschoolers and kindergartners.

12 free shapes and cutting page (www.mpmideas.com)- geared towards preschool aged children

Construction truck scissor cutting practice sheets (MO & MH)- Kids will practice cutting lines.

Cut, copy and glue for spring (Your Therapy Source)- Free 3-page packet in black and white. Includes a butterfly, ice cream cone and a snail.

Free cutting and coloring pack (Tot Schooling)- Cutting pack features straight, diagonal, curved and zig zag lines.

House scissor practice (Teaching Station)- Download free worksheets. Includes shapes of circles, squares, triangles, and rectangulars.

Printable preschool cutting busy box (Fun with Mama)- post includes ways to teach kids how to use scissors and develop cutting skills

Rocket scissor practice (Teaching Station)- Kids will practice cutting and pasting shapes to make a rocket.

Snake spiral worksheet (www.education.com)- Kids can both color and cut out the spiral design.

Trolls, hair-cutting (Tot Schooling Net)- Several different levels of difficulties.

4 Tips On Task Initiation For Children and Adults

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Task Initiation is often a challenge for children and adults with an executive functioning disorder. For a child, it may be lack of initiative in doing homework while for an adult, it may include forgetting or putting off paying bills. Children and adults with task initiation issues generally have a diagnosis of autism, ADHD, Intellectual disability or a learning disorder.

Click here to download a printed version of the article

Signs of a task initiation impaired executive functioning skill would be someone having difficulty in getting started on a task and keeping the effort needed in order to complete the task. A child or an adult require external cues in order to complete the task. Also, it will require understanding what is expected and understanding the task. Here are a few strategies:

  1. Limit Distractions. In the classroom any type of added sensory input can defer the student from getting started in their school work.
  2. Create a List. Visual support will help to increase getting the work done for a school-age child, you may want to create a to-do list which the steps are broken down into smaller steps. When a person with an executive function is given a task, it may be overwhelming, making it more difficult to get started.
  3. Use Cues. A clock or a timer will help the child or adult stay on time and understanding the amount of time it will take to complete a task
  4. Break task down. Create where the work is done in chunks so that the work will not be as overwhelming for the student.

National Association of Councils on Developmental Disabilities

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Click to download a printed version

Through the Developmental Disabilities Assistance and Bill of Rights Act of 2000, created the State Councils on Developmental Disabilities which serves to coordinate and provide services for individuals with developmental disabilities. In the United States, there are 56 councils focusing on advocacy, systems change, and capacity building.

Alabama
Executive Director: Elmyra Jones-Banks
Phone: 334-242-3973
www.acdd.org

Alaska
Executive Director: Patrick Reinhart
Phone: 907-269-8990
www.dhss.alaska.gov

American Samoa
Executive Director: Norma Smith
Phone: 684-633-2696

Arizona
Executive Director: Erica McFadden
Phone: 602-542-8977
www.azdes.gov/addpc

Arkansas
Executive Director: Eric Munson
Phone/TDD: 501-682-2897
www.ddcouncil.org 

California
Executive Director: Aaron Carruthers
Phone: 916-322-8481
www.scdd.ca.gov

Colorado
Executive Director: Marcia Tewell
Phone/TDD: 720-941-0176
www.coddc.org

Commonwealth of the
Northern Mariana Islands
Executive Director: Pamela Sablan
Phone: 670-664-7000/1
www.cnmicdd.org

Connecticut
Executive Director: Melissa Marshall
Phone: 860-418-6160
www.ct.gov/ctcdd

Delaware
Executive Director: Pat Maichle
Phone: 302-739-3333
www.ddc.delaware.gov

District of Columbia
Executive Director: Mat McCollough
Phone: 202-724-8612
http://ddc.dc.gov

Florida
Executive Director:Valerie Breen
Phone: 850-488-4180
www.fddc.org

Georgia
Executive Director: Eric Jacobson
Phone: 888-275-4233
www.gcdd.org

Guam
Executive Director: Roseanna Ada
Phone: 671-735-9127
www.gddc.guam.gov

Hawaii
Executive Director: Waynette Cabral
Phone: 808-586-8100
www.hiddc.org

Idaho
Executive Director: Christine Pisani
Phone: 208-334-2178 or
1-800-544-2433
www.icdd.idaho.gov

Illinois
Executive Director: Kim Mercer
Phone: 312-814-2080
www.state.il.us/agency/icdd

Indiana
Executive Director: Christine Dahlberg
Phone: 317-232-7770
www.in.gov/gpcpd

Iowa
Executive Director: Becky Harker
Phone: 800-452-1936
http://iddcouncil.idaction.org

Kansas
Executive Director: Steve Gieber
Phone: 785-296-2608
www.kcdd.org

Kentucky
Executive Director: MaryLee Underwood
Phone: 502-564-7841
www.kyccdd.com

Louisiana
Executive Director: Sandee Winchell
Phone: 225-342-6804
www.laddc.org

Maine
Executive Director: Nancy Cronin
Phone: 207-287-4213
www.maineddc.org

Maryland
Executive Director: Brian Cox
Phone: 410-767-3670
www.md-council.org

Massachusetts
Executive Director: Dan Shannon
Phone: 617-770-7676
www.mass.gov/mddc

Michigan
Executive Director: Vendella Collins
Phone: 517-335-3158
www.michigan.gov/mdch

Minnesota
Executive Director: Colleen Wieck
Phone: 651-296-4018
www.mncdd.org

Mississippi
Executive Director: Charles Hughes
Phone: 601-359-6238
www.mscdd.org

Missouri
Executive Director: Vicky Davidson
Phone: 573-751-8611
www.moddcouncil.org

Montana
Executive Director: Deborah Swingley
Phone: 406-443-4332
Fax: 406-443-4192
www.mtcdd.org

Nebraska
Executive Director: Kristen Larson
Phone: 402-471-2330
www.dhhs.ne.gov/ddplanning

Nevada
Executive Director: Sherry Manning
Phone: 775-684-8619
www.nevadaddcouncil.org

New Hampshire
Executive Director: Isadora Rodriguez-Legendre
Phone: 603-271-3236
www.nhddc.org

New Jersey
Executive Director: Kevin Casey
Phone: 609-292-3745
www.njcdd.org

New Mexico
Executive Director: John Block III
Phone: 505-841-4519
www.nmddpc.com

New York
Executive Director: Sheila Carey
Phone: 518-486-7505
www.ddpc.ny.gov

North Carolina
Executive Director: Chris Egan
Phone/TDD: 919-850-2901
www.nccdd.org

North Dakota
Executive Director: Julie Horntvedt
Phone: 701-328-4847
www.ndscdd.org

Ohio
Executive Director: Carolyn Knight
Phone: 614-466-5205
www.ddc.ohio.gov

Oklahoma
Executive Director: Ann Trudgeon
Phone:  405-521-4984
www.okddc.ok.gov

Oregon
Executive Director: Jaime Daignault
Phone: 503-945-9941
www.ocdd.org

Pennsylvania
Executive Director: Graham Mulholland
Phone: 717-787-6057
www.paddc.org

Puerto Rico
Executive Director: Myrainne Roa
Phone: 787-722-0590
www.cedd.pr.gov/cedd

Rhode Island
Executive Director: Kevin Nerney
Phone: 401-737-1238
www.riddc.org

South Carolina
Executive Director: Valarie Bishop
Phone: 803-734-0465
www.scddc.state.sc.us

South Dakota
Executive Director: Arlene Poncelet
Phone: 605-773-6369
www.dhs.sd.gov/ddc

Tennessee
Executive Director: Wanda Willis
Phone: 615-532-6615
www.tn.gov/cdd

Texas
Executive Director: Beth Stalvey
Phone: 512-437-5432
www.tcdd.texas.gov

Utah
Executive Director: Claire Mantonya
Phone/TDD: 801-533-3965
www.utahddcouncil.org

Vermont
Executive Director: Kirsten Murphy
Phone: 802-828-1310
www.ddc.vermont.gov

Virgin Islands
Executive Director: Yvonne Peterson
Phone: 340-773-2323 Ext. 2137
www.dhs.gov.vi/disabilities

Virginia
Executive Director: Heidi Lawyer
Phone: 804-786-0016
www.vaboard.org

Washington
Executive Director: Ed Holen
Phone: 360-586-3560
www.ddc.wa.gov

West Virginia
Executive Director: Steve Wiseman
Phone: 304-558-0416
www.ddc.wv.gov

Wisconsin
Executive Director: Beth Swedeen
Phone: 608-266-7826
www.wi-bpdd.org

Wyoming
Executive Director: Shannon Buller
Phone: 307-777-7230
www.wgcdd.wyo.gov

 

2017 Disability Awareness Month and Observances

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Our 2018 disability awareness month article blog is here

Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seems to grow. Awareness activities range from one day to a month.

Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets.

awareness-header

January

January 4- World Braille Day

National Birth Defects National Month

February

February 15- International Angelman Day

Duchenne Muscular Dystrophy Awareness Week February 13-19

March

Down Syndrome Awareness Week March 18- 24 (United Kingdom)

Brain Injury Awareness Month

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Multiple Sclerosis Month

National Tuberculosis Awareness Month

Social Work Month

Trisomy Awareness Month

April

Auditory Processing Awareness Month

Autism Awareness Month

Occupational Therapy Month

May

May 5- Cri Du Chat International Day

International Cri Du Chat Awareness Week May 1-7

Asthma and Allergy Awareness Month

Apraxia Awareness Month

Better Speech and Hearing Month

Cystic Fibrosis Awareness Month

Mental Health Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

June

Helen Keller Deaf-Blind Awareness Week June 24-30

Dravet Syndrome Awareness Month

Tourette Syndrome Awareness Month

July

National Fragile X Awareness Month

August

Aicardi Syndrome Awareness Month

September

Craniofacial Acceptance Month

Hydrocephalus Awareness Month

National Spinal Cord Injury Month Awareness

Sickle Cell Anemia Awareness Month

October

October 6- World Cerebral Palsy Day

OCD Awareness Week- October 8-14

ADHD Awareness Month

Down Syndrome Awareness Month

National Disability Awareness Month

National Dyslexia Awareness Month

National Physical Therapy Month

Rett Syndrome Awareness Month

Sensory Processing Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

November 4- National Stress Awareness Month

22q Awareness Month

Epilepsy Awareness Month

December

December 3- International Day of Persons With Disabilities

 

 

 

 

 

 

Happy Holidays

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Happy Holidays From:

logo

Special Needs Resource Blog will take a break during the holidays and will return Monday, January 2, 2017 with new information, tools and resources to post including more downloadable free tools and templates Monday thru Friday. I am excited and look forward to sharing more resources with you in the new year.
Thanks to all of you for following my blog this year. Wishing you and your families joy and peace all through the holidays and throughout the new year. May the spirit of the holidays be with you throughout the new year.  🙂  🙂

Speech-language Pathology and Adult Services

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speech-word-cloud
Guest Blogger, Anne Marie Pineiro, M.A. CCC-SLP, 

Speech-language Pathologists serve individuals, families, and groups from diverse

linguistic and cultural backgrounds. Services are provided based on applying the

best available research evidence, using expert clinical judgments, and considering

clients’ individual preferences and values. Speech-language pathologists address

typical and atypical communication and swallowing in the following areas:

–pragmatics (language use, social aspects of communication)

-literacy (reading, writing, spelling)

– prelinguistic communication (e.g., joint attention, intentionality, communicative signaling)

–paralinguistic communication

  • cognition- attention,  memory,  sequencing,  problem solving,  executive functioning
  • feeding and swallowing- 4 phases of swallowing

-oral, pharyngeal, laryngeal, esophageal

–orofacial myology (including tongue thrust)

-oral-motor functions

Source:   http://www.asha.org/uploadedFiles/SP2007-00283.pdf

In providing services to those Adults diagnosed with a variety of Developmental Disabilities, the SLP’s role may become much more defined, focusing on what is most functional to an individual in the areas of speech, receptive and expressive language (verbal or non-verbal communication) and feeding/ swallowing.  Very often we are attempting to assess and/or maintain an individual’s current level of functioning in the above areas and to train all those involved in the care of that individual in the strategies and implementation of them to achieve that goal.  In our Agency, for example, we break the assessment down into the following areas in order to develop functional and measurable outcomes:

Speech

  1. Does the individual use speech functionally to communicate wants/needs in a variety of settings?
  2. If so, is their speech understood by all, some, few communicative partners?  Are there any strategies a person might use to increase his/her intelligibility- modifying volume, rate, resonance, increasing fluency, etc.?  Does the person use Augmentative Communication to supplement speech when he/she cannot be understood e.g. low/high tech communication device, writing, American Sign Language, Picture Language Board, etc.

Language

  1. Receptive language (Language comprehension) including attention to objects, using objects functionally, identification of objects and/or pictures, comprehending one, two or three-step oral directives, vocabulary, comprehension of attributes and spatial relationships, or auditory comprehension on the word, sentence and paragraph levels.  Is comprehension on the literal or inferential levels?
  2. Expressive language- (Language expression)- for those who are verbal, the MLU (mean length of utterance) is assessed.  For non-verbal individuals, language expression can be in the form of pointing to one or two picture symbols consecutively on a picture language communication board or AAC device, writing or typing single words, phrases, sentences or paragraphs on paper, computer or AAC device.

-AAC device assessments for nonverbal individuals take into account the individual’s cognitive skills, physical abilities in order to access the device (direct selection with hand or finger, eye gaze, head pointer, switch/scanning, etc.), receptive and expressive language skills, communicative intent and pragmatic language abilities, and literacy.  All those involved in the individual’s care play an extremely important role in whether or not someone may receive an AAC device since they will be the ones to set up/take down the device and provide basic maintenance for the device, including programming, charging, etc.

Feeding and Swallowing:

Many people wonder why an SLP would be the one to review an individual’s mealtime plan or protocol.  ASHA guidelines state it best: “The speech-language pathologist is a primary professional involved in assessment and management of individuals with swallowing and feeding disorders. These areas include:

  • Performing clinical swallowing and feeding evaluation;
  • Performing instrumental assessment of swallowing function with medical professionals as appropriate;
  • Identifying normal and abnormal swallowing anatomy and physiology;
  • Identifying signs of possible or potential disorders in upper aerodigestive tract swallowing and making referrals to appropriate medical personnel;
  • Making decisions about management of swallowing and feeding disorders;
  • Developing treatment plans;
  • Providing treatment for swallowing and feeding disorders, documenting progress, and determining appropriate dismissal criteria;
  • Providing teaching and counseling to individuals and their families;
  • Educating other professionals on the needs of individuals with swallowing and feeding disorders and the speech-language pathologists’ role in the diagnosis and management of swallowing and feeding disorders;
  • Serving as an integral part of a team as appropriate;
  • Advocating for services for individuals with swallowing and feeding disorders;
  • Advancing the knowledge base through research activities.

In addition, Speech-language pathologists have extensive knowledge of anatomy, physiology, and functional aspects of the upper aerodigestive tract for swallowing and speech across the age spectrum including infants, children, and adults (including geriatrics). The upper aerodigestive tract includes oral, pharyngeal, and cervical esophageal anatomic regions. Speech-language pathologists also have extensive knowledge of the underlying medical and behavioral etiologies of swallowing and feeding disorders. In addition, they have expertise in all aspects of communication disorders that include cognition, language, and behavioral interactions, many of which may affect the diagnosis and management of swallowing and feeding disorders.”

Source: http://www.asha.org/policy/TR2001-00150/#sec1.3

The dysphagia and feeding disorders that are seen in adults with developmental disability include poorly developed and absent feeding and oral preparation skills and competencies, physiological and anatomical impairments that degrade oral-pharyngeal and esophageal bolus motility, and disruptive or maladaptive mealtime behaviors. Nutrition, hydration, saliva management, ingestion of medications, and management of the oral hygiene bolus may be involved. Upper airway obstruction (choking), aspiration, malnutrition, and dehydration may result from the disorder (Rogers et al., 1994, Sheppard et al., 1988).  Source: http://www.asha.org/policy/TR2001-00150/#sec1.3

Therefore, in our Agency that serves Adults with Developmental Disabilities, the SLP works as one member of the Team, including the Occupational Therapist, Physical Therapist, Nurse, Residential Team and Family Members to create a mealtime protocol or plan which simply states the best way to maximize nutrition while at the same time attempting to decrease incidents of choking (partial or complete blockage of the airway) or aspiration (food or liquid making its way into the lungs which can lead to aspiration pneumonia).  These plans are developed so that all involved in the individual’s care may be informed of the best feeding practices for that individual which include: adaptive mealtime equipment (any cup spoon, plate, straw, etc. used for an individual to improve ability to eat independently and to improve oral-motor control), positioning in chair or wheelchair, degrees of assistance needed for self-feeding, food and liquid consistencies, food allergies and intolerances, the presence of any mealtime behaviors, including rapid pace of eating which may increase risk of choking or aspiration, and any specific instructions the caregiver would find useful in feeding the individual or maximizing the individual’s ability to feed themselves.

I hope you find this information helpful in identifying the SLP’s role in providing services to adults with Developmental Disabilities.

This information is in no way intended to serve as a complete guide in this area, but is meant to simply assist in identifying ways the SLP works as part of the Interdisciplinary Team in serving adults with developmental disabilities in a day habilitation setting

Lesson Plan: Sensory Activities for Children and Adults

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Orange is a color that is associated with the fall months of October and November. It can also be used as a training activity for people with developmental disabilities.

Click here to download a printed version

Facts about the color orange:

  • Orange is the color between red and yellow
  • It is associated with amusement, extroverts, warmth, fire ,energy, danger taste, aroma and autumn
  • It is the national color of Netherlands
  • It is the symbolic color of Buddhism and Hinduism.

Activity: What’s in the Box

Learning Objective: to identify various items using a multi-sensory approach

Activity Area:

  • Visual
  • Tactile
  • Olfactory
  • Kinesthetic

Materials needed:

  • shoe box
  • candy corn
  • carrot
  • orange
  • circus peanuts
  • crayon
  • cheeze-it
  • balloon
  • pumpkin
  • leaf

Instructions: Place all items into an empty container such as a shoe box. Once completed, have participants sit in a circle and pass around the box. Give each person an opportunity to touch the object and to guess the name of the object. For people with a severe cognitive level or multi-disabilities, provide hand over hand guidance.

Prompting:

Discuss with the group or class the various sizes, the aroma, etc.

Alternative Activity:

  1. You can also do a compare and contrast activity by adding items into the box of different colors and having the group choose the orange items.
  2. Have the group create a collage by cutting out items in a magazine that are orange. This will help with improving fine motor skills.

 

 

Epilepsy- General Information

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Epilepsy is a chronic disorder of the central nervous system. It is often characterized by seizures and is the fourth most common neurological disorder and affects people of all ages.

epilepsy ribbon

Click here to download printed version

A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two unprovoked seizures occurring greater than 24 hours apart.
  2. One unprovoked seizure and after two unprovoked seizures occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome.
Seizures

A seizure is caused by a burst of abnormal activity in the brain. With a seizure, a person has change in awareness, behavior, body movement or sensation. A seizure can last from a few seconds to a few minutes. Seizures can take on many different forms and affect people in different ways.

Auras

Auras are often describes as a warning before the occurrence of a seizure. Not everyone experiences an aura. Some have described it as a change in feeling, sensation, thought or behaviors. this may include:

  • An overpowering smell.
  • Nausea or indigestion.
  • A rising/sinking feeling in the stomach.
  • a sleepy/dreamy feeling.
Types of Seizures

Generalized Tonic Clonic Seizures. Involves the entire brain. May also be referred to as a grand mal seizure. This occurs when abnormal electrical activity affects all or most of the brain. often the body will stiffen and then the person will lose consciousness and then the body will shake due to uncontrollable muscle contractions.

Absence Seizure– A brief loss of consciousness or awareness. It generally last only seconds and mainly occurs in children. Signs may include a blank stare, lip smacking and repeated blinking, chewing or hand movement.

Focal Seizures– The burst of electrical activity is contain in one part of the brain. In a simple focal seizure, you may have muscular jerks or strange sensations in one arm or leg. The person does not lose consciousness or awareness.

Causes
  • brain trauma
  • genetics
  • stroke
  • tumors
  • brain infections
  • head injury.
Risk Factors
  • Babies who are born small for their age
  • Babies who have seizures in the first month of life
  • Cerebral Palsy
  • Autism Spectrum Disorders
  • Conditions with intellectual and developmental disabilities
  • Family history of epilepsy (febrile)
Triggering Factors
  • Stress or anxiety
  • Lack of sleep or tiredness
  • Skipping meals
  • Alcohol intake
  • Flickering lights
  • Fever
  • Caffeine
Diagnosis
Treatment

 

The following websites offer additional information on epilepsy including causes, symptoms, treatment, and diagnosis:

Centers for Disease Control and Prevention

Epilepsy Foundation

Mayo Clinic

Medical News Today

Medlineplus

National Institute of Neurological Disorders and Stroke 

WebMD

Wikipedia

None of the information provided is meant to treat or diagnose any conditions. Not is it a substitute for medical, or psychological diagnosis and treatment.

My ADHD Story and What You Can Do

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Source: The Bender Bunch

Attention Deficit Hyperactivity Disorder, known as ADHD is a behavioral condition that affects nearly 11% of our student population. These children are typically very impulsive, hyper, and struggle to pay attention and remain on task.

You may say, “Well that’s me.” Many of us have difficulties paying attention when something doesn’t interest us, or sometimes we may feel hyper. I do! But children with ADHD struggle so much with these behaviors that it often takes over and affects every aspect of their life; home, school, and their social life. Click here for the rest of the story.

Understanding Medicaid Waiver Services

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Home and Community-Based services Waiver allows people with long-term such as disabilities to receive services in a home or community setting. The goal of the waiver program is to enable States to tailor services to meet the needs of a particular group. Standard services can include case management, home health aide, adult day habilitation and respite care. The Federal and State Governments jointly fund and administers the program. At the Federal level, the Centers for Medicare and Medicaid Services (CMS) administers the program. Each State administer its Medicaid program in accordance with CMS approved State plan. Each State is allowed a great amount of flexibility in designing and operation it its Medicaid program as long as it complies with the Federal requirements.

 

Activity Ideas for Developmental Disabled Adults

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Board games.
Source: E-How

When it comes to activities, disabled adults have distinctive needs. Unlike average adults, disabled people may require the help of respite workers to do certain activities. However, the needs of disabled adults are not always comparable to those of disabled children because many disabled adults are sexually mature and socially competent. Many activities meet the needs of developmentally disabled adults. Click here to read the rest of the story

October is National Disability Employment Month

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Click here to download a printed version

National Disability Employment Awareness is recognized each October to highlight the workforce contributions of people with disabilities.

So much as been accomplished over the years, but still, we have a long way to go. In almost all states, the number of people working with disabilities is half of those without disabilities. This year, I wanted to reflect on how much has been achieved over the years.

A History of Disability Employment Awareness

1920- The Smith-Fess Act: Signed into law by President Woodrow Wilson, establishes the Vocational Rehabilitation program for Americans with Disabilities.

1935- Social Security Act of 1935- establishes an income system for those unable to work by providing benefits.

1936- Randolph-Sheppard Act: Signed by President Franklin D. Roosevelt in 1936, the Randolph-Sheppard Act mandates a priority to people who are blind to operate vending facilities on federal property.

1938- Wagner-O’Day Act:The Wagner-O’Day Act is passed, requiring all federal agencies to purchase specified products made by people who are blind. In 1971, the Javits-Wagner O’Day Act expands the program to include services as well as supplies and incorporate people with other significant disabilities. In 2006, the program is renamed AbilityOne.

1945- Declaration of National Employ the Physically Handicapped Week:The return of service members with disabilities from World War II sparks public interest in the contributions of people with disabilities in the workplace. On August 11, 1945, President Harry S. Truman approves a Congressional resolution declaring the first week in October “National Employ the Physically Handicapped Week.’ In 1962, the word “physically” is removed to acknowledge the employment needs and contributions of individuals with all types of disabilities.

1954- Vocational Rehabilitation Gains Momentum:Congress passes the Vocational Rehabilitation Amendments of 1954, increasing the scope of the VR system. Targeting people who could proceed or return to work with assistance, VR helps thousands of people obtain employment. Mary Switzer, Director of the Office of Vocational Rehabilitation at the time, uses this authority to fund more than 100 university-based rehabilitation programs. The Act also initiates funding for research, eventually leading to the National Institute on Disability and Rehabilitation Research.

1956- Creation of Social Security Disability Insurance: Congress passes the Social Security Amendments of 1956, which create a Social Security Disability Insurance (SSDI) program for workers with disabilities aged 50 to 64. Additional amendments two years later extend SSDI benefits to the dependents of workers with disabilities.

1973- The Rehabilitation Act:The Rehabilitation Act of 1973 marks a major step forward in legislation impacting the employment of people with disabilities, extending and revising state Vocational Rehabilitation services and prohibiting discrimination on the basis of disability by federally funded and assisted programs, federal employers and federal contractors.

1977- Section 504 of Rehabilitation Act: After major demonstrations in 10 U.S. cities on April 5, including a 150-person sit-in in San Francisco led by Judith Heumann and Kitty Cone lasting 28 days, U.S. Secretary of Health, Education and Welfare Joseph Califano signs regulations implementing Section 504 of the Rehabilitation Act. These regulations extend civil rights to people with disabilities, covering any program or activity, including employment services, receiving federal financial assistance

1986- Employment Opportunities for Disabled Americans Act of 1986:The Employment Opportunities for Disabled Americans Act enhances work incentives for people with disabilities under the Supplemental Security Income (SSI) program by making permanent section 1619 of the Social Security Act, which provides for special SSI payments and Medicaid coverage while eligible individuals make attempts to work.

1990- Americans with Disabilities Act: President George H. W. Bush signs the Americans with Disabilities Act (ADA) into law. Modeled on the Civil Rights Act and Section 504 of the Rehabilitation Act, the ADA stems from collective efforts by advocates in the preceding decades and is the most comprehensive disability rights legislation in history. Its employment provisions prohibit discrimination in job application procedures, hiring, advancement and termination and provide for equal access to workers’ compensation; job training; and other terms, conditions and privileges of employment.
1992- Rehabilitation Act Amendments: Amendments to the Rehabilitation Act emphasize employment as the primary goal of vocational rehabilitation (VR). Specifically, they mandate presumptive employability, meaning applicants should be presumed to be employable unless proven otherwise, and state that eligible individuals must be provided choice and increased control in determining VR goals and objectives, determining services, service providers and methods of service provision.

10 Speech Therapy Blogs You Should Be Reading

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Speech therapy is a key component in the life of a child with a disability. When it comes to speech therapy, there are so many blogs that provide an abundance of resources for other speech therapist, teachers and parents. Finding the right ones however can be a challenge.

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The following blogs provide tons of information, resources and tips on speech language topics. Here are 10 speech therapy blogs worth checking out (in no particular order).

Beautiful Speech Life– Creates and develops therapy materials for fellow SLP’s and teachers. This website provides freebies, language materials and quick therapy tips.

Nicole Allison Speech Peeps– This website offers speech language resources on a variety of topics and an evidence-based intervention series.

PediaStaff– A resourceful blog providing informative news information and article blogs from speech language websites.

Simply Speech– A site with freebies and great blog ideas and activities

Speech 2 U- Provides resources, freebies and therapy topics on communication, social language, social language, organization, plus more!

Speechy Musing– Provides speech therapy resources on a variety of topics. Age range includes, birth to 3, elementary school and middle school on the subject of articulation, language and AAC; The site also includes a blog for fellow speech therapist.

Sublime Speech– Provides therapy to children with severe and profound disabilities. Website includes information on apps, articulation, language, materials and social skills

Teach Speech 365. Includes freebies, giveaways and therapy topics.

The Dabbling Speechie– A website for speech and language pathologist and parents offering a variety of resources on articulation, language and social skills.

The Speech Room News– Specializing in pediatric speech and language therapy, Jenna’s site provides resources for speech language pathologists and educators. The website includes free resources, and treatment topics on articulation, social language, preschool and more.

 

26 Great Resources on Special Needs Clothing

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Children and adults with disabilities with sensory issues, autism, ADHD, down syndrome and cerebral palsy often find challenges in finding clothing that meets the need of feeling good and appropriate.

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Challenges may also include difficulties in handling buttons and closures. Here are 25 resources that focus on shoes, outerwear, and adaptive clothing.

Adaptive Clothing

Adaptations By Adrian- Adaptive clothing including side zippers, wide band elastic waist for custom-made capes, wheelchair, pants, shorts adult protectors and cape protecting scarf.

CAPR-Style– Located in the U.K, adaptive clothing for adults and children including feeding tube covers.

Designed By Dignity– Adaptive clothing fashion clothes for men and women.

Down Design Dream– Adapting Clothing for children and adults with special needs

Easy Access Clothing– Adaptive clothing for adults and children.

Professional Fit Clothing– Adaptive clothing for adults and children including adults bibs, clothing protectors and nightware.

Rackety’s- Based in the U.K, products include adaptive clothing for children and adults such as vests, outdoor clothing, and nightwear.

Something Sew Special– Handmade adaptive clothing for children with special needs including bibs, ponchos, bodysuits and bandanas.

Special Kids Company– where every child should be seen and not hidden!  International provider of bodysuits for older children with special needs including PEG/tube fed children aged 2-14 years old.  Available on all Amazon platforms (.com/.ca/.co.uk/.fr/.de/.es/.it)

Specially For You Inc.– Custom clothing for children with physical disabilities. Products include night wear, dresses, tops, one piece outfits and hooded poncho’s.

Tender Ivy– Onesie garment designed for protecting vulnerable areas.

Wonsie– Based in Australia, products include special needs onesie bodysuits for older children and adults.

Sensory Clothing

Children and adults with sensory processing issues may find it difficult wearing certain types of clothing. The following stores sell items that are for sensitive skin, medically fragile and pressure points.

Cool Vest– products includes children’s cooling vest.

Independent You– Adaptive outerwear, sportswear and sleepwear.

Kozie Clothes– Adaptive medical and sensory clothing for medically fragile and special needs babies and children.

No Netz– Anti-chafe swimwear for boys and men.

SmartKnit Kids– Seamless products for children with sensory issues. Products include, socks, undies, tees and bralettes.

World’s Softest– Socks for sensitive skin

Shoes for AFO’s

The following are stores that sell shoes that fit over orthotics.

Ablegaitor- Orthopedic shoes for children. Can be used without AFO’s.

Hatchbacks– Children’s orthopedic shoes for use with orthotics.

Healthy Feet Store– An online orthopedic shoe and footcare store including AFO’s accommodations.

Keeping Pace– Children’s orthopedic footwear designed for AFO’s.

Shoby Shoes– Custom-made orthopedic shoes and support boots for special needs children

Soft Star Shoes– Will customize shoes to work wit AFO’s and DAFO’s.

Coats for Wheelchairs

Coats for individuals who use wheelchairs  made need special clothing. The following online stores, specialize in adaptive outerwear for children and adults.

Koolway Sports– Based in Ontario, Canada, Koolway Sports items include blankets, hoods, and capes.

Silvert’s– Adaptive clothing for men and women including footwear and wheelchair clothing.

Weighted Vest

Weighed vest can be used for children and adults with autism, ADHD, Cerebral Palsy, Muscular Dystrophy and a sensory processing disorder.

e-Special Needs– provides a selection of weighted vests and clothing

Fun and Function– Includes items such as explorers vest, fleece hoodies and compression vests.

Zika Virus and Microcephaly

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zikaheading

Media coverage surrounding the Zika virus outbreak and its link to microcephaly in newborns continue as the number of cases continue to grow including a recent article on the discovery of infected mosquitos found in the state of Florida.

What exactly are the facts?

Zika virus disease is a virus which is primarily transmitted by Aedes mosquitoes that were first identified in Uganda in 1947 in monkeys. The rates of human infections were reported across Africa and Asia from the 1960’s to the 1980’s. It wasn’t until 2015 however when Brazil reported a direct association between the Zika virus and microcephaly. Since then, the number of people infected has grown in alarming rates including the number of children born with microcephaly.

Transmission

Typically, the Zika virus is transmitted through the bite of an infected mosquito. These types of mosquitos are generally found in tropical environments. The virus can also be transmitted through sexual activity and can be detected in body fluids including blood, urine, amniotic fluids, semen, saliva and spinal cord fluids.

Signs and Symptoms

Symptoms may include a slight fever which may appear a few days after a person is bitten by an infected mosquito. Other signs may include conjunctivitis, and muscle and joint pain. The symptoms typically last between 2-7 days. There is currently no cure for the virus.

What is the relationship between the Zika virus and Microcephaly?

The Center for Disease Prevention and Control (CDC) confirmed the Zika virus infection during pregnancy does cause microcephaly and other severe fetal brain defects.

What is Microcephaly?

Microcephaly is defined as a medical condition where the brain does not grow properly resulting in a smaller than normal size head.

microcephaly-comparison

Diagnosis

Often, microcephaly can be diagnosed during pregnancy using an ultrasound test. This is generally done late in the 2nd trimester or early in the third trimester. After a baby is born, a health practitioner will measure the distance around the baby’s head and compare the measurements to the general population standards. Severe microcephaly occurs when the baby’s brain has not developed during pregnancy.

Incidence

Microcephaly is considered rare. In the United States, microcephaly occurs from 2 babies per 10,000 live births to 12 per 10,000 live births. An estimated 25,000 births per year. However, the rates in Brazil have jumped from 0.04 percent to 1.9 percent within the last year.

Causes

Besides the Zika virus, microcephaly may be caused by:

  • German measles
  • Chicken pox
  • Exposure to drugs or alcohol in the womb
  • Chromosomal  abnormalities
  • Decreased oxygen to the fetal brain
  • Severe malnutrition
  • Gene deletion i.e. DiGeorge syndrome

Associated Conditions

Children born with microcephaly may not show any signs or symptoms initially, but may develop the following later:

  • cerebral palsy
  • seizures
  • intellectual disabilities
  • learning disabilities
  • hearing impairments
  • visual impairments

Treatment

There is currently no treatment for microcephaly. Early intervention is vital for the growth and development of the child.

Resources

CDC- Build a Prevention Kit-Provides information on reducing the risk of Zika by creating a prevention kit.

Centers for Disease Control and Prevention – This site provides information on Zika travel notices and countries with the endemic including guidelines for traveler’s visiting family and friends in the affected area.

Live Coverage– complete coverage of the outbreak

U.S. Department of State– Maintains an updated status notice on the virus.

The following medical sites provide additional information on microcephaly including causes, symptoms, test and diagnosis:

Organizations

Cortical Foundation– Dedicated to providing services to educate, advocate, support and improve awareness of cortical malformations

Foundation for Children with Microcephaly– A website created to help and inform parents and families of children who have been diagnosed with microcephaly

Selected News Articles

The following are selected articles on the Zika Virus and Microcephaly:

A mothers battle: Surviving microcephaly in Brazil.

Microcephaly: “It’s not the end of the world.”

Protecting pregnant women in the U.S. from Zika is a top priority, Official says.

Sesame Street’s Elmo and Raya warn kids about Zika

Scientists determine how Zika virus causes brain defects and microcephaly

Zika Revealed: Here’s what a brain-cell killing virus looks like

 

 

West’s Syndrome

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What is West’s Syndrome?

The average onset generally begins at an average age of 6 months. Symptoms may include a pattern of an infant bending forward with a stiffening of the body, including the arms and the legs. Each episode generally last for a few seconds. These episodes typically occurs I clusters that can last up to 20 minutes.

Causes
  • Trauma
  • Brain malfunctions
  • Infections
  • Down syndrome
  • Tuberous sclerosis complex
Statistics and Facts

West syndrome occurs 1 in every 2,000 to 6,000 live births, which peak between the ages of 4 and 7 months old. 90 percent of incidences occur before the age of 1 year. West syndrome accounts for approximately 30 percent of incidences involving infants. Boys are more likely to be affected than girls.

Other Know Names
  • Generalized Flexion Epilepsy
  • Infantile Epileptic Encephalopathy
  • Infantile Myoclonic Encephalopathy
  • Jackknife Convulsions
  • Massive Myoclonia
  • Infantile Spasms
  • Salaam Spasms
History

Initially discovered in the 1840’s by Dr. William James West when he noticed his own son, James E. West showed the characteristics of “bobbings” that caused a complete heaving of the head towards his knees and then immediately relaxing to the upright position. Dr. West originally coined the phenomena as “Salaam Tics”.

Diagnosis and Testing
  • Electroencephalography (EEG)
  • A physical and neurological exam
  • Computer Tomography (CT)
  • Magnetic resonance Imaging (MRI)
  • Blood Test
  • Urine Test
  • Wood Lamp (for the purpose determining if tuberous sclerosis is a possible diagnosis)
Treatment
  • Steroid therapy by injection into a muscle or prednisone by mouth
  • A seizure medication called Sabril
  • Ketogenic diet

 

Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions.

Intellectual Disability

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What is an Intellectual Disability?

DSM-V defines intellectual disability as a disorder with onset during the developmental period that includes both intellectual functioning including abstract thinking, judgment, academic learning, problem solving.  Adaptive functioning including limitations in activities of daily living, communication, social participation, and independent living across multiple environments such as home, school, work and community. Deficits are on the onset during the developmental period.

According the American Association on Intellectual Disabilities (AAIDD), Intellectual Functioning refers to general mental capacity such as, learning, reasoning and problem-solving.

Types

Although historically, the levels of severity was based on I.Q. scores, this has changed to adaptive functioning which determines the levels of support required.

Mild
  • Social Domain- There may be difficulties in regulating emotions and behaviors in an age-appropriate manner. There tends to be a limited understanding of calculated risk, and social judgment.
  • Practical Domain- May need assistance in independent living skills such as grocery shopping, transportation, banking and food preparation.
Moderate
  • Social Domain: Capacity for relationships is evident in ties to family and friends and may have successful friendships across life and sometimes relationships in adulthood.
  • Practical Domain: Can care for personal needs involving eating, dressing and hygiene and as an adult participate in all household task.
Severe
  • Social Doman: Spoken language is limited. Speech may be ingle words or phrases. The individual understands simple speech.
  • Practical Domain: Requires support for all activities of daily living, including meals, dressing and bathing. The person will require supervision at all times. Unable to make responsible decisions regarding self-care.
Profound
  • Social Domain: Has limited understanding of symbolic communication in speech and gestures. The person expresses his or her own desires and emotions through non-verbal communication.
  • Practical Domain: The child or adult is dependent on other people for basic needs including self-care and independent living including health and safety.
Global Developmental Delay

Children under the age of 5 are given this diagnosis when an individual fails to meet expected developmental milestones in several areas of intellectual functioning. This includes children who may be too young to participate in standardized testing.

Causes

Causes can include:

  • Complications during childbirth
  • Problems after birth
  • Chromosomal (Down syndrome, Fragile X syndrome)
  • Metabolic
  • Nutritional
  • Genetic
  • Poverty and cultural factors

Prevalence

  • Approximately 1% of the world population
  • Prevalence for severe intellectual disability is 6 per 100
  • In the United States, Intellectual disability comprises of 3 percent of the general population
  • Nationally, 34% of people with intellectual disability are employed
  • Males are more likely than females to be diagnoses with both mild and severe

 

Happy Holidays!

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HAPPY HOLIDAYS2015

Special Needs Resource Blog will take a break during the holidays and will return Monday, January 4, 2016 with new information, tools and resources to post including more downloadable free tools and templates Monday thru Thursday. I am excited and look forward to sharing more resources with you in the new year.
Thanks to all of you for following my blog this year. Wishing you and your families joy and peace all through the holidays and throughout the new year. May the spirit of the holidays be with you throughout the new year.  🙂   🙂

 

5 Resources to Support Parents of Children with Autism

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I received these great resource articles for families with child with autism from Angela Tollerson, a blogger from familyhealthnet. Her site provides resources on family health and wellness. Please share these links with others who may benefit and don’t forget to stop by and visit Angela’s blog at: forfamilyhealth.net

  1. Anxiety and Autism Spectrum Disorders
    http://www.iidc.indiana.edu/pages/anxiety-and-autism-spectrum-disorders
  2. The Moment I Got My Son with Autism’s Need for Routine
    https://www.autismspeaks.org/blog/2014/09/16/moment-i-got-my-son-autisms-need-routine
  3. The Well Travel Guide for Parents of Autism Spectrum Children
    https://travelblog.expedia.ca/autism-travel-guide/
  4. Nutrition for Children with Autism Spectrum Disorder
    http://www.eatright.org/resource/health/diseases-and-conditions/autism/nutrition-for-your-child-with-autism-spectrum-disorder-asd
  5. 10 Fun Activities for Children with Autism
    http://www.education.com/magazine/article/10-activities-children-autism/

 

HAPPY THANKSGIVING!

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November is Epilepsy Month!

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Over 30 Online Resources on Rett Syndrome

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So much has been written on the subject of Autism, but how much do you know about Rett Syndrome? This disorder fall under the autism spectrum disorder category due to similar traits and characteristics.

Rett Syndrome is a neuro-developmental rare disorder that affects primarily girls. Discovered by Andreas Rett who described the symptoms as wasting and slow growth. Rett Syndrome is rare and occurs in 1 out of 23,000 births. The disorder consists of four stages:
Stage 1: Generally begins between the ages of 6 and 18 months. Gross motor skills begin to slow down and stagnates
Stage 2: Between the age of 1 and 3 years, will regress and lose any skills that were previous acquired.
Stage 3: During this stage, apaxia becomes apparent. Seizures become common and gross motor skills deteriorate.
Stage 4. Loses all gross motor skills and generally uses a wheelchair.

Symptoms

  • Difficulty in coordination
  • Loss of communication skills
  • Dyspraxia
  • Severe motor disabilities
  • Abnormal hand movement
  • Breathing abnormalities
  • Cold hands and feet
  • Apraxia
Similar in Autism Characteristics include:
  • Screaming
  • Crying
  • Hyperventilation
  • Lack of eye contact
Similarities in cerebral palsy include:
  • Hypotonia
  • Gait difficulties
  • Spasticity
  • Teeth-grinding

Medical Sites

Boston Children’s Hospital
Cleveland Clinic
Mayo Clinic
MedicineNet.com
Medscape
National Institute of Neurological Disorders and Strokes
National Organization for Rare Disorder
Science Daily
WebMD
Wikipedia

Organizations and Foundations

Girl Power 2 Cure
Kate Foundation
New Jersey Rett Syndrome Association
Northwest Rett Syndrome Foundation
Rett Syndrome.org
Southeastern Rett Syndrome Alliance

Twitter

Rett Girl
Rett Syndrome GP2C
Rett Syndrome News
Rett UK

Facebook

Cure Rett
Ontario Rett Syndrome Association
Rett Syndrome of Ireland

Blogs

Grace for Rett
Jessica’s Journey with Rett Syndrome
Living with Rett Syndrome
My Silent Angel’s Fight

Teaching Strategies

ACC for Children Who Have Rett Syndrome
Multi-Model Communication Strategies
Rett Syndrome: Teacher Tools
Some Rett Syndrome Tips

You Tube Video’s

Happy 1 Year Blog Anniversary!

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one year anniversay

 

Wow! Time really does fly. It is so hard to believe that it has been one year since I began this blog. Well officially On September 25th, but why not start the celebration early right? During the past year, I have written 102 articles which averages to about 2 a week. Not too bad huh?

I started this blog as a way of giving back to a career which has given me so much joy.. Helping people disabilities, families, professionals and organizations. Working as both a speaker and a trainer in the developmental disability field I have collected loads of information pertaining to special education, special needs, and developmental disability topics and felt the time was right to share. My other purpose in creating Special Needs Resource Blog was realizing that most blogs and social media sites were created mainly from parents and special education teachers. It truly saddens me that in the year 2015, parents are still struggling to locate services and information on their own.

My other passion and joy is learning and sharing information with others. My vision for upcoming year to continue to share resources, expand and gather additional information. In the upcoming year, I will have a page for free items including templates that can be duplicated.

In celebrating Special resources 1 year anniversary, I am raffling off a few items. All are welcome to participate.

autims.magnet

Autism Car Magnet

Autism Earrings

Autism Earrings

Autism Lanyard

Autism Lanyard

Rules

  1. Contest is open to both international and domestic visitors
  2. Contest is open from September 11th to September 25th
  3. I only request that you follow me. You can follow my Twitter, Google+, Facebook Like or this blog.
  4. winner must have a valid email address. Failure to respond within 72 hours will result in a new winner being chosen.

Thanks again for all of your support and feel free to contact me.

 

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Pick-Up Sticks as a Training Activity for Staff

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Click here for printed copy

STICKSLOGO

During my trainings, I often incorporate games that help staff understand from the point of view of a person with a disability. This is a fun and simple game

Providing ongoing sensitivity training for staff working with children with special needs and adults with developmental disabilities on a regular basis lessens the risk of staff losing sight of the specific needs of each person. One game that is fun and also allows participants to reflect is an old fashion game of pick-up sticks. This game has been around for centuries and is both inexpensive and fun. This game can be conducted during staff meetings or your next staff development day.

Purpose: Enhance staff sensitivity towards people with disabilities, specifically fine-motor skills, cerebral palsy, eye-hand coordination, intellectual disabilities and learning disabilities.

Learning Objectives: As a result of this training

Instructions: Participants will grab all of the sticks and quickly release his/her hand and allows the sticks to scatter. Each participant will proceed to pick up the stick one by one using the black stick with the non-dominant hand. If any of the sticks move, the game stops and the next person will attempt to pick up all the sticks.

  • Once the game is completed, Time should be given to discuss and reflect on the activity.
  • ask the participants how they felt.
  • Some of the feelings the presenter wants to encourage includes, frustration, slow, anger, and hopelessness.
  • Ask- What was the purpose of this exercise.
  • Some answers should include, to improve of understanding of what others are going through.
  • Discussion should include next steps including, increasing patience

Length of Training Session: 60 Minutes

Recommended Number of Participants: 3-15 people

Time: Allow each person 3 minutes to complete the task.

Materials: Pick- up sticks, timer

 

I purchases my sticks at a local stationary store however you can also purchase the pick-up sticks online. check out the resources below:

Resources

Century Novelty– $5.95
Jet.com-$5.52
S & S Worldwide – $5.49

Childhood Disintegrative Disorder Resources

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Childhooddd

Childhood disintegrative disorder (CDD), also known as Heller’s Syndrome is a developmental disorder that is characterized by aggression of previously acquired skills such as language and social abilities. Symptoms include:

  • Lack of play
  • Loss of motor skills
  • Loss of social skills
  • Delay in language

The following resources provide an overview of Childhood disintegrative disorder including prevalence, symptoms, diagnosis, and treatment.

Encyclopedia of Mental Disorders
Mayo Clinic
Medline Plus
WebMD
Wikipedia

Books

The Blessing of Autism: one family’s journey through childhood disintegrative disorder

When Autism Strikes: Families Cope with Childhood Disintegrative Disorder

 

Aicardi Syndrome Resources

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aicardi syndrome ribbon

Aicardi Syndrome is a rare genetic disorder that occurs in 1 in 105,000 to 167,000 newborns in the United States and occurs exclusively in females. People with Aicardi Syndrome often have undeveloped tissue which connects the let and right halves of the brain. For additional information, click on the links below.

Medical Sites

eMedicine
Genetics Home Reference
National Organizations for Rare Disorders
WebMD
Wikipedia

Foundation

Aicardi Syndrome Foundation

 

You’ll grow to love that extra chromosome! 

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If only I could go back to the day our daughter was born. There’s so much I’d say to comfort myself. Hopefully, I’ll eventually help someone else at the start of their journey. I want someone to see that everything is going to be alright! You’ll survive this storm of emotions! Your baby isn’t the baby you dreamed of but I’m here to say your precious baby will be so much more than you could ever imagine!

Continue reading You’ll grow to love that extra chromosome! .

Echolalia Resources

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You many have heard the term “echolalia.” it is often associated with people diagnosed with autism and is characterized as the repetition of words that may be immediate or delayed after the original words are spoken. For additional information, please click on the links below:

About Health
Medicine Net
Musing of an Aspie
Special Education Services
Teach Me To Talk
 Wikipedia

Warm Weather Precautions Resources

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As the summer begins to heat up, now is the time to put warm weather and safety precautions into place. Children and adults with disabilities should:

  • Drink plenty of fluids
  • Use an air conditioner when possible
  • Take a cool bath or shower
  • Wear loose fitting clothing

For additional information click on the link below:

Extreme Heat and Health Problems- Disabled World
Health and Safety Alert- Ohio Department of Developmental Disabilities
Health and Safety Alert for Caregivers of Individuals with Developmental Disabilities- New Jersey Department of Human Services
Hot Weather Tips- Family Caregiver Alliance
Summer Safety Precautions- New York Office of People with Developmental Disabilities (download PDF)
Three Ways Weather Affects People with Disabilities- Essential Accessibility

Developmental Disability Awareness Month

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March is Developmental Disability Awareness Month.

Facts
  • In 2010, 5.2 percent of school-aged children were reported to have a disability
  • 15.2 million Adults (6.3 percent experience some kind of cognitive disability.
  • According to the CDC, one in six or about 15 percent of children aged 3 through 17 years have one or more developmental disabilities.

 

The Term “developmental disability” means a severe, chronic disability of an individual that:
  1. Is attributable to a mental or physical impairment or combination of mental and physical impairment.
  2. Is manifested before the individual attains age 22
  3. Is likely to continue indefinitely.
  4. Results in substantial functional limitations in 3 or more of the following areas of major life activity:
          1. Self-care
          2. Receptive and expressive language
          3. Learning
          4. Mobility
          5. Self Direction
          6. Capacity for independent living
          7. Economic self-sufficiency
          8. Reflects the individual’s need for a combination and sequence of special, interdisciplinary, or genetic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.
Infants and children- An individual from birth to age 9, inclusive who has substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described in clause 4.

CDC- Learn the Signs. Act early

History of the developmental Disabilities Act

Test how much you know about developmental disabilities.

Click on the link below an print out the word search.

developmental disability game pic

disability test

 

 

Edwards Syndrome Resources

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Edwards Syndrome also known as Trisomy 18 is a rare disorder caused by an extra copy of the 18th chromosome. Edward syndrome occurs in 1 in 6000 births and will affect female more than males. It is also the second most common trisomy after Down Syndrome

Symptoms
  • Clenched hands
  • Crossed legs
  • Low birth weights
  • Developmental delays
  • Microcephaly (small head)

Resources

Medical

emedicinehealth.com

Medscape Reference

WebMD

Genetics Home Reference

Wikipedia

Foundations

Trisomy 18 Foundation

Lucina Foundation

Family Blogs

Loving Life with Full Trisomy 18

Kayli is Loving Life Trisomy Style!!

Our Trisomy 18 Journey

Sensory Processing Disorder

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Sensory Processing Disorder (SPD, formally known as sensory integration dysfunction) is a condition in which the brain has difficulty in receiving information from the senses.

Signs and symptoms may include:

  • oversensitive

  • Common sounds may be overwhelming

  • Uncoordinated

  • Hard to engage in conversation or play

 Below are a list of resources on the topic:

Medical

WebMed
Sensory Processing Disorder.com
Wikipedia

Organizations

Sensory Processing Disorder Foundation

Books

out of synchThe out-of-synch-child

 

raising sensoryRaising a Sensory Smart Child

 

January is Bath Safety Month

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january-is-bath-safety-month

Happy Holidays

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The Special Needs Blog wishes you and yours a happy holiday!

happy holidays

Family Resources

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Special Education- A Crash Course

Basic Special Education Rights

Disability Resource Links

Financial Resources

OSEP Resources for Families

The Families and Advocates Partnerships for Education

Planning for a Special Needs Child-** New

Understanding Dyslexia and How to Help Children Who Have It

 

The Importance of Self-Esteem for Kids With Learning and Attention Issues

 

Parenting Tips for ADHD: Do’s and Don’ts

 

How to Create an Autism-Friendly Environment for Kids

How to Discuss Puberty with Your Child Who Has Special Needs

 

Creating the Optimal Environment for a Kid with ADHD

ADHD and Addiction – What is the Risk?

Teaching the Person with Autism How to Drive

Updated September 15, 2017

Assistive Technology Laws

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Assistive Technology Laws

American with Disabilities Act

Individuals with Disabilities Education Act (IDEA)

Section 508 of the Rehabilitation Act

Assistive Technology Act of 1998

 

Special Education Blogs

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Reality 101- Council for Exceptional Children

About.com

Special Education Strategies and More

Life in Special Education

Friendship Circle Blog

 

Adapted Switches Blogs

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No Limits to Learning

Glenda’s Assistive Technology Information

Teaching Learners with Multiple Special Needs

Spectronics Blog

excitim-special needs blog

Love That Max- Special Needs Blog

Cold Weather Precautions Resources

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Mayo Clinic- safety tips for exercising outdoors

Winter preparedness tips for persons with disabilities

Winter storm safety checklist

Wind Chill Chart

Tips for Winter Weather Preparedness for People with Disabilities

Early Intervention Resources

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  1.  ECTA-Center- Provides national leadership in assisting states with the implementation of high-quality child and family outcome measurements for early intervention
  2. Early Intervention Definition
  3. Early Intervention (Part C of IDEA)- Describes Part C of IDEA. Focuses on early intervention including eligibility and evaluation and assessment.
  4. Parent Center HUB- A resource website that summarizes early intervention information.
  5. Autism Speaks- Describes early intervention for a child born with autism.
  6. First Signs, Inc.- A national non-profit organization dedicated to educating parents and professionals about the early signs of autism and related disorders.
  7. Early Intervention Research Institute– An interdisciplinary organization committed to investigating and improving policies and practices that support the well-being of at-risk children.
  8. Effective Practices in Early Intervention
  9. Finding Early Intervention Resources in your State
  10. Teaching Tools for Challenging Behaviors

Abuse Resources and Links

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Articles

Sexual Abuse of People with Disabilities

Sexual Abuse Definition-The ARC

Preventing Abuse of Children with Cognitive, Intellectual and Developmental Disabilities

Abuse and Neglect: Individuals with Developmental Disabilities

Developmental Disability Laws and History

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Since the early days of the arrival of the Pilgrims, laws were established to protect both children and adults with disabilities. from the right to work to the right to a free education. Below, is a listing of Laws that were established to protect people with disabilities.

Click Events in the Development of Disability Policy to print the list.

 

 1636 – Colonial Law by Pilgrims at Plymouth gave benefits to disabled soldiers.

 

1830s – Schools for the Blind were established in New York, Pennsylvania, and Massachusetts.

 

1879 – An Act to promote the Education of the Blind provided annual funds for books and educational materials to blind children.

 

1954 – Vocational Rehabilitation Act Amendments of 1954 (P.L. 83-565) enacted extensive revisions. These included financing improvements, establishment of research and demonstration project funding for counselor education, and funding for construction of rehabilitation facilities.

 

1963 – President Kennedy, in an address to Congress, called for deinstitutionalization and increased community services for persons confined to residential institutions for the mentally ill and mentally retarded.

 

1965 – Vocational Rehabilitation Act Amendments of 1965 (P.L. 89-333) made comprehensive revisions following an extensive review of the Act. These included expansion of services to a broader population of rehabilitation clients and establishment of the National Commission on Architectural Barriers to Rehabilitation of the Handicapped.

 

1968 – The Architectural Barriers Act of 1968 (P.L. 90-480) requires buildings and facilities designed, constructed, altered or financed by the Federal government after 1969 to be accessible to and usable by persons with disabilities.

 

1968 – Vocational Education Act Amendments (P.L. 90-576) required each state to earmark 10% of its basic grant for services for youth with disabilities.

 

1970 – Elementary and Secondary Education Act Amendments of 1970 (P.L. 91-230) created a separate Act – The Education of the Handicapped Act (EHA). Part B authorized grants to states to assist them in initiating, expanding, and improving programs for the education of children with disabilities.

 

 

1970 – The Developmental Disabilities Services and Facilities Construction Amendments of 1970 (P.L. 91-517) included broad responsibilities for a state planning and advisory council to plan and implement a comprehensive program of services for persons with developmental disabilities.

 

1971 – Amendments to Title XIX of the Social Security Act (Medicaid Program) (P.L. 92-223) authorized public mental retardation programs to be certified as intermediate care facilities and requires that these programs offer, among other things, “active treatment”.

 

1972 – Social Security Amendments of 1972 (P.L. 92-603) repealed existing public assistance programs and added in their place a new Title XVI (Supplemental Security Income, SSI) program. This program authorizes cash benefits for individuals and couples who are aged, blind, or disabled.

 

1973 – The Rehabilitation Act of 1973 (P.L. 93-112) includes a total rewrite of the state formula grant supporting the vocational rehabilitation program and the competitive programs supporting personnel development, research, and demonstrations. In addition, the legislation, among other things adds “Section 502”, which establishes the Architectural and Transportation Barriers Compliance Board to enforce the Architectural Barriers Act of 1968 and provide technical assistance to agencies subject to Section 504 regulations. In addition, the legislation adds “Section 504”, which prohibits discrimination against otherwise qualified persons with disabilities in any program or activity receiving federal funds.

 

1973 – The Housing and Community Development Amendments of 1974 (P.L. 93-383) expanded the low-income rent subsidy program under “Section 8” to include families consisting of single persons with disabilities. The legislation also extended the “Section 202” direct loan program to nonprofit agencies to projects for persons with mental as well as physical disabilities.

 

1974 – Elementary and Secondary Education Amendments of 1974 (P.L. 93-380) included amendments to Part B of Education of the Handicapped Act (EHA) that laid the basis for comprehensive planning, the delivery of additional financial assistance to the States, and the protection of handicapped children’s rights.

 

1974 – The Community Services Act (P.L. 93-644) stipulated that 10% of children enrolled in the Head Start program must be children with disabilities.

 

1974 – The Social Services Amendments of 1974 (P.L. 93-647) consolidated social service grants to states under a new Title XX of the Social Security Act.

 

1975 – The Developmental Disabilities Assistance and Bill of Rights Act (P.L. 94-142) creates a “bill of rights” for persons with developmental disabilities, funds services for persons with developmental disabilities, adds a new funding authority for university affiliated facilities, and establishes a system of protection and advocacy organizations in each state.

 

1975 – The Education for All Handicapped Children Act (P.L. 94-142) amended the Education of the Handicapped Act to mandate a free appropriate public education for all children with disabilities in a state, regardless of the nature or severity of the child’s disability (Part B of the Education of the Handicapped Act).

 

1978 – The Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments (P.L. 95-602) establishes the National Institute of Handicapped Research and new programs for people with disabilities, including comprehensive service centers, independent living centers, recreation programs, and pilot programs for employment. The legislation also updated and made functional the definition of the term “developmental disability” and clarified the functions of the university affiliated programs.

 

1980 – The Civil Rights of Institutionalized Persons Act (P.L. 96-247) authorizes the U.S. Department of Justice to sue states for alleged violations of the rights of institutionalized persons, including persons in mental hospitals or facilities for people with mental retardation.

 

1980 – Social Security Act Amendments (P.L. 96-265) authorized special cash payments (Section 1619(a) and continued Medicaid eligibility (Section 1619(b)) for individuals who receive Supplemental Security Income (SSI) benefits but, nonetheless, engage in substantial gainful activity. Provision made effective for 3 years.

 

 

1982 – The Tax Equity and Fiscal Responsibility Act of 1982 (P.L. 97-248) permits states to cover under their Medicaid plans home care services for certain children with disabilities even though family’s income and resources exceeded state’s normal eligibility standards.

 

1982 – The Job Training Partnership Act (P.L. 97-300) revamped the Comprehensive Employment and Training Act (CETA). The Act emphasizes training for private sector jobs. The Act establishes a estate “Job Training Coordinating Council” and the “Private Industry Council (PIC)”.

 

1982 – Telecommunications for the Disabled Act of 1982 (P.L. 97-410) requires that workplace telephones used by persons with hearing aids, and emergency phones are hearing-aid-compatible.

 

1984 – The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed the National Council on Disability from and Advisory Board in the Department of Education into an independent Federal agency.

 

1984 – The Voting Accessibility for the Elderly and Handicapped Act (P.L. 98-435) requires that registration and polling places for federal elections be accessible to persons with disabilities.

 

1984 – Child Abuse Amendments of 1984 (P.L. 98-457) requires states to enact procedures or programs within child protection agencies to respond to cases in which medical treatment is withheld from disabled infants.

 

1984 – The Social Security Disability Benefits Reform Act of 1984 (P.L. 98-460) extended the Section 1619 worker incentive program under SSI for an additional 3 years.

 

1984 – The Developmental Disabilities Act of 1984 (P.L. 98-527) added a statement of purpose to the Act, authorized protection and advocacy systems to have access to the records of persons with developmental disabilities residing in institutions.

 

1985 – The Consolidated Omnibus Budget Reconciliation Act of 1985 (P.L. 99-272) authorizes states to cover case management services on less than a statewide or comparable basis to targeted groups under Medicaid; expanded the definition of “habilitation” for Home and Community-Based Waiver recipients with developmental disabilities to cover certain pre-vocational services and supported employment for previously institutionalized individuals; authorizes states to cover ventilator-dependent children under the waiver program if they would otherwise require continued inpatient care.

 

1986 – The Protection and Advocacy for Mentally Ill Individuals Act of 1986 (P.L. 99-139) establishes a formula grant program operated by existing protection and advocacy systems primarily focusing on incidences of abuse and neglect of mentally ill individuals.

 

1986 – The Handicapped Children’s Protection Act (P.L. 99-372) Overturned a Supreme Court decision and authorizes courts to award reasonable attorneys fees to parents who prevail in due process proceedings and court actions under Part B of the Education of the Handicapped Act.

 

1986 – The Air Carrier Access Act (P.L 99-435) prohibits discrimination against persons with disabilities by air carriers and provides for enforcement by the U.S. Department of Transportation.

 

1986 – The Education of the Handicapped Act Amendments (P.L. 99-457) includes a new grant program for states to develop an early intervention system for infants and toddlers with disabilities and their families and provide greater incentives for states to provide preschool programs for children with disabilities between the ages of 3 and 5.

 

1986 – Amendments to the Job Training Partnership Act (P.L. 99-496) require special consideration for persons with disabilities in the awarding of discretionary grants.

 

1986 – The Rehabilitation Act Amendments of 1986 (P.L. 99-506) clarified that supported employment is a viable outcome of vocational rehabilitation and specified that states must plan for individuals making the transition from school to work.

 

1986 – The Employment Opportunities for Disabled Americans Act (P.L 99-643) made the Section 1619 (a) and 1619 (b) work incentives a permanent feature of the Social Security Act. The Act also added provisions to enable individuals to move back and forth among regular SSI, Section 1619 (a) and Section 1619 (b) eligibility status.

 

1987 – The Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987 (P.L. 100-146) updated language in the legislation, strengthened the independence of the State Planning Councils, strengthened authority of protection and advocacy systems to investigate allegations of abuse and neglect and created separate line items for core funding and training for university affiliated programs.

 

1987 – The Housing and Community Development Act of 1987 (P.L. 100-242) requires HUD to earmark 15 percent of Section 202 funds for non-elderly persons with disabilities.

 

1988 – The Civil Rights Restoration Act (P.L. 100-259) amends the Rehabilitation Act’s definition of an individual with a disability and defines coverage of Section 504 as broad (e.g. extending to an entire university) rather than narrow (e.g. extending to just one department of the university) when federal funds are involved.

 

1988 – The Medicare Catastrophic Coverage Act of 1988 (P.L. 100-360) clarifies the circumstances under which Medicaid reimbursement would be available for services included in a child’s individualized education program (IEP) or individualized family services plan (IFSP) under the Individuals with Disabilities Education Act.

 

1988 – Haring Aid Compatibility Act of 1988 (P.L. 100-394) requires most telephones manufactured or imported into the U.S. must be compatible for use with telecoil-equipped hearing aids.

 

1988 – The Temporary Child Care for Handicapped Children and Crisis Nurseries Act of 1988 (P.L. 100-403) authorized the Secretary of Health and Human Services to make grants to states for public and nonprofit agencies to furnish temporary, non-medical care services to children with disabilities and special health care needs.

 

1988 – The Technology-Related Assistance for Individuals with Disabilities Act (P.L. 100-407) provides grants to states to develop statewide assistive technology programs.

 

1988 – The Fair Housing Act Amendments (P.L 100-430) adds persons with disabilities as a group protected from discrimination in housing and ensures that persons with disabilities are allowed to adapt their dwelling place to meet their needs.

 

1989 – Omnibus Budget Reconciliation Act of 1989 (P.L 101-239)

  • Specified, among other things, that at least 30% of the Maternal and Child Health Block Grant under Title V of the Social Security Act must be used to improve services for children with special health care needs.
  • Included a major expansion in required services under Medicaid’s Early and Periodic Screening, Diagnosis, and Treatment Program (EPSDT).

 

1990 – The American with Disabilities Act (ADA) (P.L. 101-336) guarantees the civil rights of people with disabilities by prohibiting the discrimination against anyone who has a mental or physical disability in the area of employment, public services, transportation, public accommodations, and telecommunications.

 

 

1990 – Carl D. Perkins Vocational Educational Applied Technology Amendments (P.L. 101-392) rewrote the vocational legislation, eliminated the 10% earmarking for disabled youth but included specific language to assure students with disabilities access to qualified vocational programs and supplementary services.

 

1990 – The Television Decoder Circuitry Act (P.L. 101-431) requires dosed caption circuitry (compute chip) to be part of all televisions with screens 13 inches or larger manufactured for sale and use in the United States.

 

1990 – The Individuals with Disabilities Education Act Amendments (IDEA) (P.L. 101-476) renames the Education of the Handicapped Act and reauthorizes programs under the Act to improve support services to students with disabilities, especially in the areas of transition and assistive technology.

 

1990 – The Developmental Disabilities Act Amendments of 1990 (P.L. 101-496) maintained and further strengthened programs authorized under the Act.

 

1990 – The Omnibus Budget Reconciliation Act of 1990 (P.L. 101-625)

  • Established a limited purpose optional state coverage of community supported living arrangements services for persons with mental retardation and related conditions (authority has since expired).
  • Authorizes community supported living arrangements and stresses individualized support rather than the standardized services common to the ICF/MR program.
  • Includes a provision called the “access credit” that enables small businesses to claim credit against taxes for half of the first $10,000 of eligible costs of complying with the ADA.

 

1990 – National Affordable Housing Act (P.L. 101-625) established a distinct statutory authority to fund supportive housing for people with disabilities, with a separate financing mechanism and selection criteria.

 

1991 – Individuals with Disabilities Education Act of 1991 (P.L. 102-119) enhances infants and toddlers program and extends the BEA support programs.

 

1991 – The Civil Rights Act of 1991 (P.L. 102-166) reversed numerous U.S. Supreme Court decisions that restricted the protections in employment discrimination cases and authorized compensatory and punitive damages under Title V of the Rehabilitation Act and ADA.

 

1992 – The Rehabilitation Act Amendments of 1992 (P.L. 102-569) includes changes that increase access to state vocational rehabilitation systems for those with the most significant disabilities, enables consumers to have greater choice and control in the rehabilitation process, and provides opportunities for career advancement.

 

1993 – The Family and Medical Leave Act (P.L. 103-3) allows workers to take up to 12 weeks of unpaid leave to care for newborn and adopted children and family members with serious health conditions or to recover from serious health conditions.

 

1993 – National Voter Registration Act (P.L. 103-31) requires states to liberalize their voter registration rules to allow people to register to vote by mail, when they apply for driver’s licenses or at offices that provide assistance and programs, for individuals with disabilities such as vocational rehabilitation programs.

 

1993 – National and Community Service Trust Act of 1993 (P.L. 103-82) established a national service program, including tuition assistance and a living allowance for individuals age 17 or older who volunteer part-time or full-time in community service programs.

 

1994 – Technology-Related Assistance for Individuals with Disabilities Act Amendments (P.L. 103-218) reauthorized the 1998 “Tech Act”, which established to develop consumer-driven, statewide service delivery systems that increase access to assistive technology devices and services to individuals of all ages and disabilities. The 1994 amendments emphasize advocacy, systems changes activities and consumer involvement.

 

1994 – The Goals 2000: Educate America Act of 1994 (P.L. 103-227) provides a framework for meeting national educational goals and carrying out systemic school reform for all children, including children with disabilities.

 

1993 – Developmental Disabilities Assistance and Bill of Rights Amendments of 1994 (P.L. 103-230) totally rewrites and updates provisions pertaining to State Planning Councils and extends and strengthens provisions pertaining to protection and advocacy systems, university affiliated programs and programs of national significance.

 

1994 – The School-to-Work Opportunities Act of 1994 (P.L. 103-382) authorizes funds for programs to assist students, including students with disabilities, in the transition from school to work.

 

 1994 – Improving America’s Schools Act of 1994 (IASA) (P.L. 103-382) reauthorized the Elementary and Secondary Education Act (ESEA). The ESEA provides the framework of federal grants to states for elementary and secondary education programs. Among other provisions, the legislation amends the Individuals with Disabilities Education Act to establish a new state program supporting statewide systems of support for families of children with disabilities.

 

1995 – Child Abuse Prevention and Treatment Act (CAPTA) Amendments of 1995 (P.L. 104-235) includes new family resource and support program that supports state efforts to develop, operate, expand and enhance a network of community-based, prevention-focused, family resource and support programs which would be equipped to address, among other things, the additional family support needs of families with children with disabilities.

 

1996 – Telecommunications Act of 1996 (P.L. 104-104) requires telecommunications manufacturers and service providers to ensure that equipment is designed, developed, and fabricated to be accessible to and usable by individuals with disabilities, if this is readily achievable.

 

1996 – The Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1996 (P.L. 104-183) extends authority to fund Developmental Disabilities Councils, Protection and Advocacy Systems, University Affiliated Programs, and Projects of National Significance.

 

1996 – Health Insurance Portability and Accountability Act of 1996 (P.L. 104-191) improves access to health care for 25 million Americans by guaranteeing that private health insurance is available, portable, and renewable; limiting pre-existing condition exclusions; and, increasing the purchasing clout of individuals and small employers through incentives to form private, voluntary coalitions to negotiate with providers and health plans.

 

1996 – Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (P.L. 104-193) provides a new, more restrictive, definition of disability for children under the Supplemental Security Income program (SSI), mandates changes to the evaluation process for claims and continuing disability reviews and requires redeterminations to be performed before a child turns 18.

 

1996 – Mental Health Parity Act of 1996 (P.L. 104-204) includes a provision that prohibits insurance companies from having lower lifetime caps for treatment of mental illness compared with treatment of other medical conditions.

 

1997 – Individuals with Disabilities Education Act Amendments of 1997 (P.L. 105-17) includes the first major changes to Part B since enactment in 1975, extends the early intervention program, and includes significant streamlining of the discretionary program.

1997 – Balanced Budget Act of 1997 (P.L. 105-33) establishes the States Children’s Health Insurance Program (SCHIP) to expand health insurance coverage for low-income children not covered by Medicaid

  • Authorizes the Social Security Administration to make redeterminations of childhood SSI recipients who attain age 18 using adult disability criteria one year after they turn 18.
  • Provides that states must continue Medicaid coverage for disabled children who were receiving SSI benefits as of August 22, 1996 and would have been eligible except their eligibility terminated because they did not meet the new SSI childhood disability criteria.

 

1999 – Ticket to Work and Work Incentives Improvement Act (WIIA) (P.L. 106-170) was passed. It establishes a Ticket to Work and Self-Sufficiency Program to provide SSDI and SSI beneficiaries with a ticket they can use to obtain vocational rehabilitation services, employment services, and other support services from an employment network of their choice. It includes an array of provisions to eliminate Social Security and Medicaid disincentives to employment, and to promote the development of supports and incentives for persons with disabilities to work.

 

2002- No Child Left Behind Act- A reform of the Elementary and Secondary Education Act which sets deadline for states to expand the scope and frequency of student testing.

2004- Individuals with Disabilities Education Improvement Act (P.L. 108.446)- Special education and related services should be designed to meet the unique learning needs of eligible children with disabilities, preschool through age 21.

 

2006- Combating Autism Act- Authorizes increased funding to the National Institutes of Health and the Centers for Disease Control for Education and Screening.

 

2010- Rosa’s Law- Changes the term “mental retardation” to “intellectual disabled” in federal laws regarding education, employment and certain health problems. The statute does not alter eligibility services or rights under the laws not does it compel states to change their terminology.

 

 

 

 

 

 

 

 

Down Syndrome Organizations

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 The internet offers a number of website that provide resources on Down syndrome. Topics including family support groups, education, medical and advocacy. For additional information, click on the links below:

down syndrome ribbon

 

 

 

Band of Angels: http://www.bandofangels.com/-

Established in 1994, Band of Angels provides support for individuals with Down Syndrome and their families. The website offers links on Down Syndrome support groups and a litany of topics including, adoption, autism and education.

Down Syndrome International https://www.ds-int.org/

A U.K. based international organization comprising a membership of individuals and organizations from all over the world. Disseminates information on Down Syndrome including prenatal diagnosis, early intervention, education, medical, health, employment, aging and human rights. Down Syndrome International also promoted World Down Syndrome Day (March 21) as a day dedicated to people with Down Syndrome.

 

Global Down Syndrome http://www.globaldownsyndrome.org/

Provides fundraising, education and governmental advocacy for the Linda Crnic Institute for Down Syndrome. Resources available on the website include, information on research, medical care and facts on Down Syndrome.

 

 

International Down Syndrome Coalition: http://theidsc.org/

Dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. Offers support to parents who are new to the Down syndrome diagnosis by connecting parents to each other.

 

National Association for Down Syndrome http://www.nads.org/

NADS is the oldest organization in the United States serving individuals with Down syndrome and their families. Also provides families with information and resources that will enable them to access appropriate services and educates the public about Down syndrome.

 

National Down Syndrome Congress http://www.ndsccenter.org/

The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

National Down Syndrome Society http://www.ndss.org/

NDSS provides resources to new and expectant parents and offers a toll-free helpline and email services. NDSS also focuses on transitions , wellness and education