Adults with Special Needs and Housing Options

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.

 

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Kids with developmental disabilities are more likely to be overweight, study says

Published By: Action News (6)

Local researchers have turned up an interesting connection between autism and obesity in children.

Teams at Children’s Hospital of Philadelphia, the University of Pennsylvania, and six others centers found that kids with developmental delays, including autism, were up to 50 percent more likely to be overweight or obese.

And the more severe the symptoms, the greater the chance of being obese.

Doctors don’t know yet why these kids become overweight. It could be due to endocrine disorders, side effects from medication, picky eating, or other factors. Click here to read the rest of the story.

6 Surprising Ways To Ditch Disability Bias In The Workplace

Published By: Forbes Magazine
Written By: Denise Brodey

People with disabilities, now the largest minority group in this country, are largely misunderstood by business leaders, managers, and well, a lot of people. And at the same time, C-suite executives are actively looking for ways to remove disability bias and lessen the employment gap. But disability advocates say the research and statistics on people’s understanding of the disability community are still dismal. How do we meet in the middle? How do we have the tough conversations that will inspire both sides?
How can we all go the extra mile? Click here to read the rest of the story

15 Resources on Picture Exchange Communication System (PECS)

Developed in 1985 by Andy Bondy, PHD and Lori Frost, MS, Picture Exchange Communication System (PECS) allows individuals with little or no communication the ability to do so using pictures. The approach includes a person giving them a picture in exchange of an item. PECS teaches functional communication and includes 6 phases.

  1. How to communicate. In the first phase, the individual learns to exchange a single picture for an item or activity they want.
  2. Distance and persistence. The individual learns to generalize by using the picture with different people.
  3. Picture discrimination. The individual learns to select from two or more pictures to ask for something.
  4. Sentence structure. Individuals learn to construct simple sentences on a detachable sentence strip
  5. Responsive requesting. Individuals use PECS to answer wh questions.
  6. Commenting. individuals are taught to comment in response to questions.

The following links below include articles and additional information on the PECS system.

Articles on PECS

What is PECS?

Communication Matters

Kid Sense

National Autism Resources

National Professional Development Center on Autism Spectrum Disorders

Free Printable PECS Cards

28 emotions: Picture communication cards

Autism Tool Kit- Free Printable PECS Cards

Blank faces: Picture communication cards

Female faces: Picture communication cards

Free Primary PECS

Daily visual schedule for kids

Male body parts with words- picture cards

Months of the year: Picture communication cards

Morning routine pictures

Printable for autistic children and their families or caregivers

Guardianship

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?

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

What are the biggest misconceptions about employing autistic people?

Published By: Sheffield Hallen University
Written By: Dr. Luke Beardon

Some employers assume that because a person is autistic they will also have some kind of learning disability. This is absolutely not true for the majority. Autistic adults display a range of intellectual abilities – as do the predominant neurotype (PNT) (non-autistic) population – from low IQ to members of Mensa.

Here are five more misconceptions about autistic people in the workplace – and why they’re not true. Click here to read the rest of the story

Bathing Training Curriculum For Direct Support Professionals

Studies show that most accidents occur in the home. There are a number of factors that increases this number in a residential setting. For example, Staff are responsible for providing care to more than one person and the may also be responsible for a number of other duties including, preparing dinner, giving out medication and working on performance goals. Given these factors, it is vital that attention and skill is given during bathing time. One minute away, could lead to a disastrous event.

The following is a training curriculum that serves to train staff (Direct care Professionals) on bath safety. I have included the lesson plan also in a PDF format and a demonstrative checklist. Once completed, staff should be able to show their competency level in bathing an individual safely. This training also satisfies and supports Core Competency 5 (safety) and Core Competency 6(Having a home).

Title:  Bath Safety Training

Description Training:

This module is intended to provide direct support professionals with principles and strategies which will assist them in the preparation, supervision and assistance necessary to ensure the safety of people with developmental disabilities. The first section focuses on identifying and evaluating required staff supervision. Section 2 includes the responsibilities of staff during bathing time.

Learning Objective(s):

  • Demonstrates steps to ensure all necessary bathing items are in the bathroom before preparing for bathing time.
  • Evaluate the level of supervision needed
  • Define the characteristics of a burn
  • Distinguish temperature for bathing vs. showering
  • Identifying the process of bathing residents to ensure the process is safely carried out.
  • Explain the risk for people with disabilities

Maximum Group Size:

Training segment 10- competency portion should be conducted one person at a time.

Blooms Taxonomy:

  • Remember
  • Understand
  • Apply

Required Employees: Direct Support Professionals

Materials:

  • Handout
  • Handout
  • Competency test
  • Competency
Training:  1 Hour
Objective 1: The participants will be able to explain bathing risk for people with disabilities

Lecture:

The trainer will begin this session with a brief introduction on the magnitude of the problem regarding accidental deaths, bathing injuries including scalding. In your own words, please say the following:

Studies show that after the swimming pool, the bathtub is the second major site of drowning in the home including residential settings with seizures accounting for most of the common causes of bathtub drowning.

The National Safety Council reported that one person dies everyday from using bathtub in the United States. That more people have died from bathtub accidents than all forms of road vehicle accidents.

Injuries from the bathroom included slipping and falling when entering or exiting the bathtub or shower.

A study concluded by the State University of New York State found bathing difficulties included maintaining balance when bathing and making transfers.

Inform participants the following:

Near-drowning happens very quickly. Within three minutes of submersion, most people are unconscious, and within five minutes the brain begins to suffer from lack of oxygen. Abnormal heart rhythms (cardiac dysrhythmias) often occur in near-drowning cases, and the heart may stop pumping (cardiac arrest). The blood may increase in acidity (acidosis) and, under some circumstances, near drowning can cause a substantial increase or decrease in the volume of circulating blood. If not rapidly reversed, these events cause permanent damage to the brain

Ask – How much water does it take to drown?

Answer- inches of water in the bathtub. Any amount of water that covers the mouth and nose.

Who is at -risk?

Tell the participants the following people are considered high risk for accidents and drowning in the bathtub or shower:

  • Older people
  • Residence with a history of seizures
  • Residents diagnosed with dementia or Alzheimer
  • Residents who require assistance or supervision for mobility, transfer or ambulation.
  • Lack of understanding of one’s own physical and cognitive limitations.

Scalding

The trainer will introduce the segment on scald burns. Tell participants that individuals with physical, cognitive and emotional challenges are at high risk for burn injuries due to mobility impairments, muscle weakness and slower reflexes.  Further explain that, sensory impairments can result in decrease sensation in the hands and feet with the resident not realizing the water is too hot.

The instructor will discuss the following handout:

Time and Temperature relationship to Severe Burns

Water Temperature Time for a third degree burn to occur
155° F 1 second
148° F 2 seconds
140° F 5 seconds
133° F 15 seconds
127° F 1 minute
124° F 3 minute
120° F 5 minutes
100° F Safe temperature for bathing

 

Objective 2: Define the Characteristics of a Burn

In this section, the trainer will give the definition of a burn, Explain to participants that a burn is damage to the skin and underlying tissue caused by heat chemicals or electricity.

Further explain, Burns range is severity from minor injuries that require no medical treatment to serious, life-threatening and fatal injuries. Further explain that burns are categorized by degrees. Have participants turn to the handout on burns.

Superficial (first degree burns)

  • Causes : sunburn, minor scalds
  • Generally heal in 3-5 days with no scarring

Characteristics;

  • Minor damage to the skin
  • Color- pink to red
  • Painful
  • Skin is dry without blisters

Partial thickness (second degree) burns

  • Damages, but does not destroy top two layers of the skin
  • Generally heal in 10-21 days
  • Does not require skin graft*
  • Skin is moist, wet and weepy
  • Blisters are present • Color – bright pink to cherry red
  • Lots of edema (swelling)
  • Very painful

Full thickness (third degree) burns

  • Destroys all layers of the skin
  • May involve fat, muscle and bone
  • Will require skin graft for healing*
  • Skin may be very bright red or dry and leathery, charred, waxy white, tan or brown
  • Charred veins may be visible
  • Area is insensate – the person is unable to feel touch in areas of full thickness injury

*Except for very small (about the size of a quarter) full thickness burns will require a skin graft to heal.  The patient is taken to the operating room where all the dead tissue is surgically removed. Skin is taken or harvested off an unburned or healed part of that person’s body and grafted or transplanted to the clean burn area. In seven to 14 days, this grafted skin “takes” or adheres to the area and becomes the person’s permanent skin. The donor site (where the skin was harvested from) is treated like a partial thickness burn and heals within 1- to 14 days.

Objective 3: Identify the process of bathing residents to ensure the process is safely carried out

The trainer will discuss the importance of following the appropriate steps when giving a resident a shower:

When escorting a resident to the bathroom, the following items should be gathered and taken to the bathroom:

  • Washcloth/bath sponge
  • Towel
  • Body wash/soap
  • Body lotion
  • Toothbrush
  • Toothpaste
  • Mouthwash
  • Hair shampoo
  • Hair conditioner

The trainer will remind participants not to leave the participants in the bathroom alone under any circumstances for those requiring supervision.

Ask- What circumstance might a person leave the person alone.

The participant should respond- none.

Click on the link below to download the competency checklist:

COMPETENCY DEMONSTRATION CHECKLIST

Click on the link below to download the training in Word format

bathing module

 

 

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 20- International Day of Acceptance

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

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 15- Disability Pride Parade (NY)

July 15- 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

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

October

ADHD 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 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

Social Anxiety Traits Overlap Between Fragile X Syndrome, Autism Spectrum Disorder

Published by: Fragile X News Today
Written by: Vijaya Iyer

Social anxiety and autistic traits are prevalent in males with fragile X syndrome and these behaviors overlap with those observed in individuals with autism spectrum disorder (ASD) without a known genetic syndrome, a study reports.

The overlap of traits between the two clinical subgroups makes their measurement extremely challenging, researchers said.

The study, “Biobehavioral composite of social aspects of anxiety in young adults with fragile X syndrome contrasted to autism spectrum disorder,” was published in the American Journal of Medical Genetics. Click here to read the rest of the story