by Cliff Nakayama
If you didn't catch NBC Dateline's "On the Brink" telecast, you can watch it at NBC.com (http://www.nbcnews.com/news/us-news/you-dont-outgrow-autism-what-happens-when-help-ends-21-n340066). It's an accurate portrayal of what you can expect when your autistic child exhausts the support by the secondary school system, and parents are left fending for themselves, trying to cobble together day programs, living arrangements, support services. I know because I've lived through it with my own autistic son who is 32 now.
Here in the Bay area, there are many day programs and group homes, and they run from really bad to fair. To say that the system is broken probably does injustice because there really is NO SYSTEM.
The one thing the telecast gets right, is that the people who understand the needs of the autistics are the parents and families. Not governments, not agencies, not social workers. Thus, any long-term solution needs to have parent & families as the core to the level of care needed. Parents can't stop their involvement just because a group home or day program has your son or daughter. They are vendors licensed by the state's business bureau, then passed over to the regional centers who really do not train, nor oversee them. Yet, the regional centers demand your son or daughter's SSI money, and will do anything to keep it flowing their way. So its incumbent on us parents to get creative about how WE manage a broken system and change it.
I am starting a campaign titled "Stop Injustice Against Autistics." The purpose is to help families with autistic adults cope with the legal and judicial systems as it becomes highly probable that your autistic adult son or daughter will encounter them in their lives. One aspect of this campaign is to create a model plan for a Community-based Mental Health Care center focusing on the autistics and otherdevelopmentally disabled.
If you didn't catch NBC Dateline's "On the Brink" telecast, you can watch it at NBC.com (http://www.nbcnews.com/news/us-news/you-dont-outgrow-autism-what-happens-when-help-ends-21-n340066). It's an accurate portrayal of what you can expect when your autistic child exhausts the support by the secondary school system, and parents are left fending for themselves, trying to cobble together day programs, living arrangements, support services. I know because I've lived through it with my own autistic son who is 32 now.
Here in the Bay area, there are many day programs and group homes, and they run from really bad to fair. To say that the system is broken probably does injustice because there really is NO SYSTEM.
The one thing the telecast gets right, is that the people who understand the needs of the autistics are the parents and families. Not governments, not agencies, not social workers. Thus, any long-term solution needs to have parent & families as the core to the level of care needed. Parents can't stop their involvement just because a group home or day program has your son or daughter. They are vendors licensed by the state's business bureau, then passed over to the regional centers who really do not train, nor oversee them. Yet, the regional centers demand your son or daughter's SSI money, and will do anything to keep it flowing their way. So its incumbent on us parents to get creative about how WE manage a broken system and change it.
I am starting a campaign titled "Stop Injustice Against Autistics." The purpose is to help families with autistic adults cope with the legal and judicial systems as it becomes highly probable that your autistic adult son or daughter will encounter them in their lives. One aspect of this campaign is to create a model plan for a Community-based Mental Health Care center focusing on the autistics and otherdevelopmentally disabled.
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