September 23, 2011 | 1:19 am

Re-igniting Passion in Parents

Posted by Michelle K. Wolf

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Katie Nack, one of the parents who lobbied for the Lanterman Act in the 60s, and a personal mentor

Sorry but this post isn’t about that type of passion (although that’s important too and is covered well by many other JewishJournal.com bloggers). The type of passion I’m writing about here is the need for parents to start actively engaging in the political process on behalf of their children with developmental disabilities to ensure that the needed services are funded so our kids can live full, meaningful lives with as much independence as possible.

At a recent Autism Society of Los Angeles conference held at Vista Del Mar, speaker after speaker exhorted the parents and professionals in the room to re-engage now, at this critical time when both the State of California and the Federal government are pondering how much and what to cut in terms of social services and provider reimbursement. At the heart of the debate in California is the key question: Will the landmark Lanterman Act still exist?

The Lanterman Developmental Disabilities Services Act, known as the “Lanterman Act”, is a key piece of legislation that was first passed in 1969 under the leadership of Assemblyman Frank. D. Lanterman, who represented the La Canada/Glendale/Pasadena area (a Republican and self-described fiscal conservative to boot).

There’s a great back story: a group of like-minded parents who refused to put their children with mental retardation into state hospitals (which was the conventional medical advice of the day) joined together and advocated strongly for a system that would help them keep their kids at home. Thanks to the persistence of this group of parents, children with developmental disabilities were finally able to receive state-funded treatments and care at home. The Lanterman Act—later amended several times—“creates a system where each person with a disability is empowered to participate in choices about where and how they live, learn, work and play. Each person with a developmental disability has an Individual Program Plan (IPP) which specifies the services and supports the person will receive, while also considering the individual’s needs, desires and objectives.” –from http://keepingthelantermanpromise.net/

(For a great documentary on this subject of those trailblazing parents, go to http://www.lanterman.org/uploads/videos/video_werehere.html)

Liz Spencer, a services coordinator at the Westside Regional Center said at the conference, “The parents in the 60s fought like hell and gave us the Lanterman Act. If it goes away, it is our own damn fault (she has a 23 year-old with Downs Syndrome).”

Valerie Vanaman, the well-regarded attorney for parents for any cases involving special education, disability issues and rights, also presented at the conference, and warned everyone, “Lawyers can’t protect the Lanterman Act—the Legislature created it and it could disappear tomorrow.”

Speaker after speaker gave us an action plan:
1) Learn what is happening in Sacramento and Washington DC
2) Get on email action network lists, and respond
3) Testify at hearings in Sacramento and in Los Angeles
4) Show up at rallies
5) Get on the boards of your local Regional Center

Like the parents who came before us, it is up to us to join forces and not allow the great gift we have been given to be discarded.