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

Person First Language For Special Needs Professionals

Here are some resources on people first language

Disability etiquette and person first language- Niagara University First Responders

Examples of People First Language- by Kathie Snow

Getting started with person-first language-Edutopia

People first language- District of Columbia Office of Disability Rights

People first language- Texas Council of Developmental Disabilities

Person First Language 101- JJslist

Using people-first language when describing people with disabilities– Very Well Family

What is person-first language and why is it important? – Laguna Shores

Identify First Language

Autistic person or person with autism: Is there a right way to identify people?– Molly Calahan

Identity- first language– Autistic Self-Advocacy Network

Identity first vs. person first: An important distinction– Association of Healthcare Journalist

This is how to talk about disability according to disabled people- Bustle

Updated 2/17/21

Angleman Syndrome and Adulthood

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.

 

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

The following are resources and articles on Angelman syndrome and adulthood

Angelman Syndrome and Obesity (Angelman Syndrome) A 2017 study reporting on a third of Angelman syndrome patients were overweight or obese.

Angelman Syndrome in Adults– (Angelman Syndrome News). An article that describes signs and symptoms of individuals with Angelman Syndrome as they approach adulthood

Anxiety in Angelman Syndrome (Angelman Syndrome News). A topic on anxiety which is commonly observed in individuals with Angelman syndrome including information on triggers and ways to manage anxiety.

AS in Adulthood (AngelmanUKorg). A website describing the transition to adulthood and issues affecting people with Angelman syndrome.

Dental Problems in Angelman Syndrome (Angelman Syndrome News). Information on how people with Angelman Syndrome may be affected and possible treatment plans.

Transitioning to Adulthood Checklist. Created by the Angelman Syndrome Foundation, provides a 4-page checklist resource for students preparing to transition out of school.

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