When Scott Badesch — president of the Autism Society of America — visited San Jose last week, he addressed a crowd of concerned autism parents gathered at the Morgan Autism Center in the Rose Garden area.
The first wave of children of the autism epidemic has started to age out of the school system, Badesch said, and is entering an antiquated and fragmented adult housing and care system wholly unprepared to handle the vast numbers of affected individuals and their often complex and intensive needs.
Autism service providers here in the Bay Area are already feeling the heat.
Morgan Autism Center’s adult program, housed in two former classrooms at the Benjamin Cory Elementary School site, is “bursting at the seams,” says Executive Director Brad Boardman. Demand for adult autism program options is soaring, he added, but scant are the facilities or staff to serve them. Autism adult programs across the Bay Area are beset by waiting lists, short-staffed, and running out of space.
In the 1980s, when California made the decision to begin shuttering Developmental Centers –- including the Agnews Developmental Center in Santa Clara –- that had housed the developmentally disabled when institutionalization was the societal norm, no one could possibly have foreseen the coming explosion in cases of autism.
From the Department of Developmental Services, which has kept careful records regarding residents with developmental disabilities, we see that rates of substantially disabling autism alone, not including milder forms of the disorder, have soared more than 2,000 percent since the 1980s. That means that for every one Californian with substantial autism in 1985 (when autism by any name was largely unheard of), we have more than 20 today.
Compounding the problem, in California the adult autism services system is funded at one-quarter the rate of the educational system, but when a 21 year-old autistic person turns 22, and is no longer eligible for special education, the needs for space and staffing hardly diminish by 75 percent.
“Of course, no one wants to return to institutionalizing dependent adults,” Boardman says, “but we must provide as an alternative a menu of strong community-based alternatives, and we’re systematically failing to do that.”
Autism is a developmental disability that affects the neurodevelopmental functioning of the individual, resulting in significant impairments in language, social interaction and behaviors. It is considered a spectrum disorder with the nature and degree of disability varying from person to person. Some, like my children, are nonverbal and will require lifelong 24/7 care and supervision. Others have little cognitive impairment but substantial challenges with social functioning and abstract thought, for example.
In cooperation with organizations around the Bay Area, the Autism Society of the San Francisco Bay Area is leading a collaborative effort to provide tangible, viable answers to the adult autism crisis. We need innovative forms of autism-friendly supported housing in every community in the Bay Area, requiring rental vouchers for those with exceptional needs, reinvention of group homes to include autism-friendly amenities, and new all-abilities housing complexes that deliberately include people substantially challenged by autism as valued participants in our community.
But housing is just a start. We will need dozens of new day programs where adults with autism can find community, meaningful work and daily activities. But in the Bay Area, this requires real estate and staff, both of which are financially out of reach for even the best intended and most efficient of programs.
With autism rates now reaching 1 in 88, or according to the latest Center for Disease Control statistics, 1 in 50 in school-age children, autism is affecting us all. We invite you to learn more about our Autism and Developmental Disabilities: Adult Housing and Lifespan Care Solutions Initiative at www.sfautismsociety.org. For more information about Morgan Autism Center, visit www.morgancenter.org.
Jill Escher, a San Jose resident, is president of the Autism Society of the San Francisco Bay Area, the mother of two children with autism, and a noted autism causation science and programs philanthropist. She can be reached at firstname.lastname@example.org.