2019 Disability Awareness Month and Observance Calendar

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 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

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

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

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4 Tips On Winter Safety For Individuals With Disabilities

Individuals with developmental disabilities have a greater chance of being impacted by the cold weather. for example people with disabilities are at a higher risk for hypothermia. Hypothermia is defines as a condition in which the body core temperature drops below the required temperature for bodily functions. Here are 5 tips on winter safety:

  1. Register with the Special Needs Registry for Disaster. This allows residents with disabilities and their families and caregivers an opportunity to provide information to emergency response agencies so emergency responders can better serve people during a disaster. The information is shared with local, state and federal agencies.
  2. For people using a wheelchair, make sure to wrap a small blanket around your legs by tucking it underneath the chair. This will help to maintain body heat.
  3. Wear multiple layers of clothing including a scarf around your neck, a winter hat and two pairs of socks.
  4. In the event of a winter storm, make sure your home is stocked with flashlights/batteries, non-electric can opener, bottled water, extra blankets and a first aid kit.

What is Lowe Syndrome?

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.

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

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

Down Syndrome Timeline

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

Strategies In Training Autistic Employees

Researchers estimate around 50,000 young people with autism turns 18 every year. Is your organization read to train these new employees?

What is Autistic Spectrum Disorder?

Autism Spectrum Disorder is a neurological disorder that includes a wide range (spectrum) of skills, symptoms and levels of support. Although no two people are alike, characteristics may include ongoing challenges with social skills that include difficulty and interacting with others. For those on the higher end of the spectrum, characteristics may include:

  • ·         A normal to high intelligence and good verbal skills
  • ·         Trouble understanding what someone else is thinking or feeling
  • ·         Difficulty understanding non-verbal cues
  • ·         May suffer from anxiety or depression
  • ·         Strong long-term memory
  • ·         May have executive functioning difficulties 
  • ·         Being highly creative
  • ·         A high sense of justice and fairness

It is important to note that autistic employees vary in the workplace. Younger employees may have received a diagnose very early their childhood while those in their 30’s to 50’s were more than likely diagnosed as adults. Many in fact may not realize they are autistic due to lack of information during their formative years. This rings true especially for women who did not fit the typical stereotype of autism.

Challenges Training Autistic Employees

The use of idioms, sarcasm, irony, metaphors and figure of speech may be difficult since most are literal thinkers.

Due to sensory sensitivities, harsh lighting and certain smells may be intolerable.

May feel anxiety working with groups during an activity, which includes role-playing and case studies.

Discomfort with noise

Coping with the unpredictable

Strategies In Training Autistic Employees
  • ·         Structured breaks- give notice in advance
  • ·         Give visual instructions. Verbal instructions are difficult to remember
  • ·         Do not assume that the employee is not listening or paying attention
  • ·         When explaining, use explicit and concrete language
Accommodations

A diagnosis of autism also qualifies under the American Disability Act (ADA).  While some may not want to disclose their diagnosis, It’s always a good idea to make sure each person is comfortable in the training. The following are some suggestions:

  • ·         Provide advance notice of topics to be discussed if possible
  • ·         Allow employees to use items to hold such as hand-help squeeze balls 
  • ·         Allow use of a noise-cancellation headset
Tips to Remember

Some autistic employees have a history of being bullied, which for many have carried over into the workplace.  Set rules in the beginning of the training that all participants should be respected.

 

 

 

 

 

 

2018 Disability Awareness Month and Observances

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


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

Strategies In Training Employees with ADHD

Have you ever conducted a training with employees where you experienced a participant interrupting you while you were talking, blurting out answers before you complete your sentence or appearing not to pay attention? Chances are you may have an employee diagnosed with ADHD.

Most people think of children when they hear the word ADHD, but the fact is that ADHD can continue into adulthood and as a life-long challenge. Currently, 4.4% of the U.s adult population is diagnosed with ADHD. Of these adults, 38% are women and 62% are men.

What is ADHD?

Attention deficit/hyperactivity disorder (ADHD) is one of the most common neurodevelopmental disorders which is often characterized by a pattern of inattention/or hyperactivity/impulsivity that can impact workplace learning through making careless mistakes,the inability to complete a task, staying organized and excessive talking throughout the training.

Typically, a person with ADHD, the difficulties lies in the part of the brain that allows people to perform higher level task known as the executive function. 90% of people with ADHD also have an executive function disorder. This is the part of the brain that engages in goal-direction and self-regulations.

Two Types of ADHD:

Types of ADHD

Type 1: Inattention Without Hyperactivity

  • Trouble paying attention
  • Trouble following direction
  • Trouble following through with task
  • Easily distracted
  • Seems disorganized or careless
  • Slow to process information

Type 2: Hyperactivity Without Inattention

  • Trouble paying attention
  • Restlessness
  • Impulsive speech and action
  • Excessive talking
  • Difficulty waiting turns
  • May have a quick temper
  • Overactive
Challenges Training Employees with ADHD

Workplace learning in most cases for the participant means learning new information, participating in training activities, sitting for a period of time and given direction.

  • A participant with ADHD may have difficulty in sustaining attention and remaining focused during lectures.
  • May need questions repeated
  • May have difficulty in grasping main ideas or details during the lecture.
  • Become easily distracted by both internal (day dreaming) or external (noises) stimuli.
  • May blurt out an answer before a question has been completed.
  • May have difficulty in listening in environments with noise distractions.
  • Difficulty in following through with instructions
  • May talk excessively
  • Difficulty in taking turn in a conversation.

The upside is that often when a person with ADHD is interested in a topic, they may hyperfocus, meaning they will fully participant in group discussion, and show great enthusiasm for the subject matter.

Strategies that help in training employees with ADHD include:

Telling participants what they will learn

Vary instructions- auditory alone will not be effective, participants with ADHD will need visual aids as well.

Allow for frequent breaks.

Summarize key points of the training as a way to reinforce the lesson

Create a leadership role such as assisting in setting up any training equipment and giving out training material.

When possible, alternate between physical and mental activities.

Stick to the expectation of the time. It will be difficult for the participant to sustain focus once a time of dismissal is given.

Conduct a stretching activity for the group when possible, I would sometimes include a game of “would you rather.” This works great but should tie into the theme of the training.

Tips to remember:

A diagnosis of ADHD also qualifies under the American Disabilities Act regarding workplace accommodations.

 

 

 

National Association of Councils on Developmental Disabilities

 

NACDD

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