Wheelchair Safety and Etiquette Resources

Manual Wheelchair Safety

A guide to using your manual wheelchair safely

A home safety checklist for wheelchair users

Manual wheelchair safety tips for caregivers

Safety first!: Tips for staying safe in your manual wheelchair

Safety/Handling of Wheelchairs

Wheelchair safety and maintenance guidelines and checklist

Wheelchair safety guidelines

Wheelchair safety tips

Wheelchair safety tips you should know

Motorized Wheelchair Safety

5 tips to staying safe while using a power wheelchair

How to operate a wheelchair safely outdoors

Power wheelchair safety tips

Wheelchair Etiquette

The articles below discuss wheelchair etiquette:

A crash course in wheelchair etiquette

Disability etiquette

Tips for wheelchair etiquette

Wheelchair etiquette and disability awareness

Wheelchair etiquette in 8 easy steps

4 Ways to Utilize Rare Disease Foundation Websites as Educators

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

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

Low Tech Augmentative and Alternative Communication (AAC) You Should Know About

You may be working with a child or an adult that uses an AAC communication device. Are you familiar with low-tech AAC devices?

According to Beukelman and Mirenda (2013), an estimated 1.3 percent of Americans cannot meet their daily needs communication needs using natural speech. Using low-tech AAC is one way to help children and adults with limited communication skills.

What is AAC?

AAC or Augmentative and Alternative Communication includes various methods of communication systems including communication devices, strategies and tools that helps a person communicate their wants, needs and thoughts specifically for children and adults who have limited communication skills.

What are the benefits of using AAC?

Studies show improvement in language development, literacy and communication among users including the use of picture exchange. There is also research that shows people working with an AAC are able to:

  • take turns appropriately
  • request items
  • decrease challenging behavior
  • improve receptive and expressive skills.
Who uses an AAC?

Children with developmental delays including motor, cognitive and physical limitations including children and adults with:

AAC Terminology You Should Know

Communication board- based on the cognitive and physical ability of the person, it is often organized by topic

Eye gaze- used in low-tech AAC by the person looking at an object and selecting the correct item using either the communication board or booklet.

Low-Tech- basic communication aids that include pictures, letters, words, symbols, communication board or picture books that cannot be changed or altered.

The following are links tp AAC core words:

AAC Core Words

70 kids picture books to target core vocabulary AAC (Omazing Kids)

100 High Frequency Core Word List (AAC Language Lab)

Core Word of the Week– The Center for AAC and Autism

Teaching Core Vocabulary– (Praatical AAC)

Low Tech AAC Boards

Eat, Think and Speak– a blog written for medical Speech and Language Pathologist on topics relating to swallowing, communication and cognition. Provides a blog article on free low-tech material including a wide variety of premade communication boards

Project Core– Provide free sample lesson plans focusing on talking with one word at a time to using correct grammar and word order.

 

What is 22q11.2 Deletion Syndrome?

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