Self-Determination: A Game Changer for People with Developmental Disabilities

November 10, 2014

For the first time in California, people with developmental disabilities and their families will soon have more control and flexibility over the services and supports they need under a new program called, “Self-Determination”. A two-day conference last week in Culver City titled, “Respecting Choice, Creating Innovation and Fulfilling Dreams” was the first step in inviting that community to actively participate in the new law’s implementation and in the words of Rio “Soulshocka” Wyles, a rapper and self-advocate with autism, to “think big y’all”.

This new Self-Determination legislation, signed into law in 2013 by Governor Jerry Brown creates a statewide Self-Determination Program that offers a voluntary alternative to the traditional way children, teens and adults with developmental disabilities who are Regional Center consumers have received services. It incorporates the key principles of the Self-Determination movement, which are freedom, self-authority, support, responsibility, and confirmation of the critical role of participants and their families making decisions about their own lives.

Based on an existing program in Michigan, as well as a 15-year old pilot program in California, Self-Determination allows families to use their yearly budget from the Regional Center to purchase a wide range of services such as behavioral therapy, independent living services as well as summer camp and paid help in the home. With Self-Determination, families will be able to hire professionals who aren’t contracted vendors, thus opening up many more choices and cutting out a lot of red tape. A third-party fiscal management service will handle all the payments and assure that funds are being used properly.

Over 450 parents, professionals and people with developmental disabilities attended this groundbreaking conference, sponsored by the Autism Society of Los Angeles, Disability Rights California and the State Council on Developmental Disabilities, and coordinated by Judy Mark, a true force of nature and one of the key parent advocates who got this bill passed, and who also co-chaired with me the Special Needs Study Mission to Israel in 2012.

There was a very electric, positive buzz to the conference, as we all started to digest all the technicalities of the new law, but also some concerns that the budgets allocated to consumers aren’t growing, and that expenses connected with the program, such as the fiscal managers, are paid out of each individual’s budgeted amount. One mother said they haven’t received services for years from their local Regional Center (there are 21 in California), even with two adult children, ages 48 and 50 with Fragile X syndrome, which is a is a genetic condition that causes significant intellectual disability, behavioral and learning challenges.

I co-facilitated two workshops on Quality of Life: Social and Recreational Opportunities, and was impressed by the depth of questions and ideas from young and older adults with developmental disabilities, along with their parents. For example, there was a mother of a 13-year-old who is struggling to find typical peers who want to be friends, and a handsome 25-year old with Down syndrome who is a regular cast member of “Glee” and wants to break into scriptwriting.

“Self Determination means that the pendulum has finally starting moving the other way – towards families, and choices for adults in the Regional Center system, “ said Valerie Vanaman, the highly esteemed special education attorney who has provided legal representation to thousands over four decades, at the closing panel. We all left the Conference energized, inspired and eager to face a future of greater individual choices and options.

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