Paying for care: What happens to 21 year old family members with severe autism after graduating from high school? Part 2

It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person.  If that isn’t scary, just read on.

Locating residential homes that are specifically for autism is challenging.  One of the best resources available for finding residential providers is The National Association of Residential Providers for Adults with Autism, hence NARPAA.  It has been created with the specific mission “to assure the availability of residential services and other supports for adults with autism throughout their lives.”  There are 28 member agencies that have been certified by the NARPAA.

These agencies are the “icing on the cake” in the world of residential autism services.

Providing life-long residential care for those with autism has been the personal mission of Dr. Ruth Sullivan.  She is a world renowned authority on autism, founded the National Autism Society and founded as well as acted as director of the Autism Services Center.   She wrote a Call to Action paper for NAARPA in 2001 about her concern with the lack of residential autism services (revised in 2007).  One of her concerns is echoed by Phil Blevin, Director of  Carolina Autism, is the lack of training of the people who are caring for individuals with autism.

Dr. Sullivan was one of the leading advocates for the Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA).  This law guarantees a public education to all children in the United States. Before its passage, individual school districts were allowed to choose whether they would educate a child with disabilities. The IDEA expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities.  This educational promise includes occupational, speech and language and other therapies.

Sadly, a law was necessary to guarantee this.   Yet it seems we need more legal action to help because the daily hands-on special education services provided free by university trained public school teachers end upon the child graduates from high school.  Absolutely no services are mandated by the Federal Government for those children (now considered adults at age 21) with autism after they leave public school.

Often families are not prepared for this transition.  It is extremely important for parents and families of children with autism to search for residential options early because there are so few places for adults with autism.   Unfortunately those 28 NARRPA member centers each serve only 100 residents or less.

Many of those who need residential care end up in group homes and centers that are not specific to autism.  And most group homes and other residential centers are not experienced with autism.  Although much has been accomplished in the science of behavioral management (one of the techniques favored by autism experts is Applied Behavioral Analysis).most center staffs are ignorant of successful ways of dealing with the unusual language, behavioral and social deficits of autism.  Unfortunately, these behaviors are likely to be dealt with in a punitive manner which often becomes severe, dangerous or even lethal.

After researching some of centers that accept people with autism, other issues were discovered.  For example, lifelong provision of services is also a key difference among facilities.  When first reviewing organizations, it was shocking to discover that some facilities require clients to work.  If they are too old or unable to work, they are not allowed to stay on in the community.

More on this issue in a later post…