by Joanne Wickersham
I'm the mother of a 21 year-old man with autism who is soon transitioning out of his post-secondary program. Last year, I visited more then 15 different adult day programs in Santa Clara County through the Santa Clara County Office of Education.
The vast majority of day programs I found depressing and archaic both in terms of philosophy and implementation. All speak of "opportunities" such as life skills, "vocational/community service," physical fitness/recreational and the like, but were in fact more institutional, generic, One Flew Over the Cuckoo's Nest-style, reminiscent of containment and macaroni art.
While all appeared to be well staffed, most staff looked bored and uninterested and seldom engaged with their charges. Only one of the 15 programs appeared thoughtfully prepared, challenging and individualized. But that program is full, and we are on a waiting list. We did not see all programs in the county, and I'm told ones of reasonably good quality are full.
I came away with abject depression at the pure futility of all the time and money and manpower the school districts directed towards my son's academics, IEP enforcement, various therapies like ABA, speech, occupational therapy, vocational and the like. Apparently, after age 21, the best I could hope for was 5 hours a day, 5 days a week of merely keeping my son contained and safe.
While that is important, I want his life and future to be "Person Centered" and currently what is available in Santa Clara County just isn't—it’s warehousing.
Furthermore, supported living assessment and training are so impacted with clients and waiting lists that who knows how and when and where anyone will receive attention. I am told that there is only ONE provider for Tailored Day Services, which is shocking. As of now, our only choice is a warehouse where my son is essentially babysat and without any legally mandated person-centered planning.
I do hope the new Self Determination law will allow clients and caregivers to carve out a meaningful life with "choices" that truly serve the clients.
I know funding is short, but while most school districts have really tried to keep up with cutting-edge programs, therapies and interventions, sadly, the day programs have not been kept current, and are out of touch with the behavioral and social challenges presented by autism.
And housing options for this new wave of young adults with autism like my son are of course nonexistent. There are no rental vouchers available to people like him, even though he is severely disabled. The ones who need help most are the ones with the softest voice.
To get anywhere in this system, with the fragmented web of IHSS, Regional Center, Medi-cal, SSI, and housing authorities, caregivers must have Mensa IQ’s, the sheer will of Samson, the luxury of time, and boundless tenacity. Every door that might lead to enrichment, meaning and security is locked, bolted and reinforced so that we as parents/caregivers are forced to attempt to plead our case and "prove" how (very obviously) incapacitated our special needs loved ones are.
Joanne Wickersham is the mother of a 21 year-old son with autism, and lives in San Jose.
Autism Society San Francisco Bay Area (SFASA) is dedicated to expanding the limited lifespan care options for the dramatically increasing numbers of adults with autism.