Category Archives: Day Habilitation

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.

 

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

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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

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

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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.

 

December Day Habilitation Activity Ideas

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Person-Centered Planning Tool Resources

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What is Person-Centered Planning?

Person-Centered Planning (PCP) is a set of approaches designed to assist someone to plan their life and supports. It is used as a life planning model to enable individuals with disabilities to increase their personal self-determination and improve their own independence.

A person-centered plan is use to communicate who they are, their likes and dislikes, to express their wants and needs and what works for them.

Resources and Templates– An information and resource site for person-centered thinking, planning and practices including tools, templates and planning for older adults.
Manual for Person-Centered Planning Facilitators– Created for person-centered planning facilitators developed by the Institute on Community Integration UAP University of Minnesota. Contains topics on preparing a checklist, facilitating a plan, follow-up and challenging situations with difficult group members.
Circle of Support Workbook– Developed by the Foundation for People with Learning Disabilities. Provides an introduction to starting a circle of support group for individuals with disabilities.

Various Approaches

Essential Lifestyle Planning- A guide process designed to help the person discover what matters to them the most.

Essential Lifestyle Planning Forms- The Delaware Division of Developmental Disabilities Services provide planning form tools including personal profile, and workbook.

MAPS

Inclusion Press– Resources available  to purchase and download for free. Information on person-centered planning- PATH, MAPS and Circle of Support. The website also includes resources on inclusion.
Person-Centered Planning Relationship Map– Free download relationship map including instructions on completing the map.

PATH- Planning Alternative Tomorrows’ with Hope- uses a visual tool to detail the future

Personal Futures Planning- An ongoing process where the team replaces system-centered methods with person-centered planning.

A Brief Guide to Personal Futures Planning – A 25 page booklet which provides information on building a personal profile, using MAPS, and components of the Personal Futures Planning process.
Planning for the Future– A workbook to help students, their families and professionals to plan for life after high school. Using a person-centered approach to identify the student’s strength.

Person centered planning

Person centered planning education site

Person centered planning-supported decision-making