The US Centers for Disease Control says that the prevalence of children with Autism Spectrum Disorder is one in every 110 children. The CDC’s 2007 report describes children born between 1992 and 1994. Those children are now aged 17 to 19, in other words they are about to “age out” of the school setting. Extrapolation of the numbers means that approximately 1,495,264 will soon be adults with autism in the United States. There are thousands more uncounted adults with autism.
As many as 40% of those with autism are completely nonverbal.
In 1975 Congress passed the Education for All Handicapped Act. Now called the Individuals with Disabilities Education Act (IDEA) it 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. Families of children with autism have come to rely heavily on the services that are provided by public schools. Unfortunately the daily hands-on special education services provided free by university trained public school teachers end upon the student’s graduation.
Absolutely no services are mandated by the Federal Government for those children with autism (now considered adults at age 21) after they leave public school.
The families of adults with autism are faced with finding help where there is little help to be found.
Until the early 1990s, autism was said to be a rare disorder, approximately four per every ten thousand births. Scientists believe that it is caused by a combination of environment and genetics. Whatever the cause, there is awareness of autism among the general population but not realism about autism.
The reality is that there are children and adults with autism that are severely disabled. Some of these individuals require round-the-clock, 24/7, eyes-on vigilance. Unfortunately, some families cannot cope with this kind of care at home. Sometimes these children have no family. Prior to the 1980s, the only choice for families with children with severe autism was placing their loved one in a state institution. There were almost no community services available except a few private schools or day programs for individuals with mental retardation. The staff at these private programs and at state institutions were not trained or experienced in working with people with an autism diagnosis. Often those presenting with a diagnosis of autism were refused admission.
Although there is much that was good in the de-institutionalization movement of the 1980s, there was an unfortunate side-effect. Communities were supposed to fill the gap left by the institutions. That hasn’t happened.
It costs over $75,000 per year for round the clock care for one adult with autism and expenses can go as high as $200,000 per year per person. Who can afford this? No insurance company covers the annual expenses of long-term care. Most families have to rely on Medicaid to cover this expense. Unfortunately in most states, the Medicaid that covers physician visits and medication is not the same Medicaid that pays for residential care.
The Medicaid program that pays for residential placement is a limited program called the Home and Community-Based (HCB) Residential Waiver. Having Medicaid doesn’t automatically mean you have the waiver. Unlike the mandatory services under I.D.E.A, the Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement.
What is available for people with autism who need residential services? Not a lot...More in the next post