| 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. |
8 Comments
Sue Swezey
1/28/2015 07:12:07 am
Joanne, you speak for many families. Unfortunately, in addition to a Mensa IQ and the will of Samson, parents searching for services may also need money – to supplement low wages of staff workers (when legal to do so), for extra help at home, for attorney's fees, etc. Sadly, the system does not and perhaps cannot provide all that our adults may require. SFAS is working very hard to close this gap and open new opportunities. Best of luck to you and your son!
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7/26/2015 11:28:53 am
Dear Joanne Wickersham: Thank you for your courageous effort on behalf of your son. I am not sure what I would do if any of my 3 children were faced with the prospect of 'nowhere to be nurtured' as an adult. I am an advocate for young children (ages 2-5 years) and have seen miracles take place here on my small farm with children who were, as your son, similarly labeled and or diagnosed as having characteristics of autistic behavior. I do know of a place in VT on a 40 acre called "Inner Fire" where the seekers (those in need of life-support) are nurtured beyond imagination and truly DO receive the help and support they need. However, I think it is geared toward those hoping to get off their meds and lead a more healthy and "normal" existence as a result of finding their center and learning how to express their feelings appropriately. The seekers actually live just off-site with other seekers and a house manager and then go to Inner Fire during the day/evening (7a-9p). They learn how to do all the things you mention and MUCH MUCH MORE! The seekers also receive individualized talk-therapy sessions three times per week but more importantly, there are numerous physical/emotional/spiritual therapies too. The seekers learn how to garden organically and prepare their own healthy meals, they consider sculpting as a "grounding" therapy, and gardening as a "get out of your inner web" therapy. There is also black-smithing, wood-working, Eurythmy (a form of movement to music or poetry), spacial dynamics for sensory integration, speech work (not at all like speech therapy in the usual sense of the word) and a most importantly, how to connect with nature. I heard about it via a podcast from a VT public television station featuring Inner Fire's founding director, Beatrice Birch. I don't know what your financial situation is but I think it is very expensive....but I ask the question, "how much would a person pay to save the life of their child". I would like to visit this ranch in VT someday. I already visited the Otto Specht school in NY to learn more about outdoor farm schools for children with Autism (I run an outdoor farm-school in Nor Cal called BeeLoved Farm). I think there is something quite magical about the connection between animals, nature and children who are locked-up inside their bodies and are experiencing chaos inside (they can't find their center). I wish you the best of luck with your son and I do hope you are able to find a nurturing place for him here in Nor Cal. Blessings to you. Kelly
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2/2/2015 09:07:41 am
Hello Joanne,
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Hi Joanne:
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Jolynn Bommarito
4/20/2015 05:11:56 am
Joanne, thank you for giving our children a voice on the current status of Adult Day Programs in Santa Clara. Its just not fair that there are no programs available in our area to support our children.
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Juana m. Smart
5/31/2015 10:13:17 am
....well put. How heavy is my heart too know what I read just means it gets even harder. My son is still in his post sec program however it's his third program and still not a good fit? It's been a fight from day one. In my perfect world, through the eyes of autism and more, all of us parents could band together. We'd make our own programs!! Isn't this funny? These are the things my husband and I dream about laying in bed at night... Take care and know your never alone.
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Catherine
4/18/2017 11:44:29 pm
Are there programs for adults with moderate to severe autism where they engage in paid employment that they enjoy, and earn enough to pay for rent, utilities, food, and clothing in the Bay Area? I am the parent of an adult with autism. I need to earn money to support myself and save for retirement. Yes, I supported my child while growing up. Our personalities clash some and I think we need to live our separate lives.
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Irene Litherland
2/21/2019 07:09:06 pm
Thank you for writing about this critical issue, Joanne. Sadly it is not at all limited to Santa Clara County. Adult programming has not kept up with best practices for individuals with autism or with federal regulations regarding community involvement and vocational training.
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