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Self-Determination and Passover

While many of us are still eating matzah (much to the dismay of our digestive systems), there’s still time to think about the underlying theme of liberation from slavery.
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April 8, 2015

While many of us are still eating matzah (much to the dismay of our digestive systems), there’s still time to think about the underlying theme of liberation from slavery. Also known as the Festival of Freedom, Passover’s essence is about transformation from living a life with no choices to living a life filled with choices. 

This paradigm shift has parallels to what will happen in California as the new Self-Determination Program, signed into law by Gov. Jerry Brown in October 2013, becomes operational later this year, impacting all 21 of the tax-funded regional centers for the California Department of Developmental Services in the state. During the program’s first three years of operation, a maximum of 2,500 children and adults with developmental disabilities — such as autism, cerebral palsy, severe epilepsy and Down syndrome — who receive services from these regional centers can opt in for the Self-Determination Program to gain more control over the services and support they receive in order to to maximize independence, personal choice and a higher quality of life. 

Self-Determination will offer a voluntary alternative to the traditional way regional center consumers have received services, which are from a limited list of pre-approved vendors within a narrow geographic area. Our new law incorporates the key principles of the international self-determination movement, which are freedom, self-authority, support, responsibility, and confirmation of the critical role of participants and their families in making decisions about their own lives.

Based on an existing program in Michigan, as well as a 15-year-old small pilot program in California, Self-Determination will now allow families to use their yearly budget from the regional center to pay for a wide range of services, including behavioral therapy and independent living services as well as recreational programs such as summer camp. With Self-Determination, families will be able to hire professionals who aren’t pre-approved vendors, thus opening up many more choices and cutting out a lot of red tape. A mandatory third-party fiscal management service will handle all the payments and ensure taxpayer funds are being used properly.

Back in November, I co-facilitated two workshops on the topic “Quality of Life: Social and Recreational Opportunities” at the first major Self-Determination conference, sponsored by the Autism Society of Los Angeles, Disability Rights California and the California State Council on Developmental Disabilities. I was very impressed by the depth of questions and ideas from both younger and older adults with developmental disabilities, along with their parents. There was a mother of a 13-year-old who is struggling to find typical peers who want to be friends with her daughter, and a handsome 25-year-old with Down syndrome, who is a cast member on “Glee” and trying to figure out how to break into scriptwriting now that the show has ended.

At the core of Self-Determination is person-centered planning, a collaborative process that allows individuals to plan their lives with the support of friends, family and professionals, and is mandated by a new federal law governing community-based programs (as opposed to living in institutions). The key elements of this process include presuming competence, even for someone who has been diagnosed with a low IQ, reframing behavior as communication, respecting cultural diversity and providing critical support for health and safety across the lifespan. 

For people who can’t communicate through spoken language or with alternative communication systems such as typing on an iPad, the team looks instead at the person’s behavior. Is she more relaxed while at the beach watching the waves? Does he react with excitement or feel overwhelmed in a high-sensory, crowded situation, such as Disneyland?

What’s so great about the person-centered planning approach is that it opens the door to creative ideas and solutions. So if Debbie, an adult highly impacted by autism and with very limited verbal capacity, indicates to her aides that she really enjoys hanging out in a certain restaurant, the staff can seek out an opportunity for Debbie to work in the back of the kitchen, helping to sort the cooking utensils after they are washed. Or if our son Danny, who is crazy about music and wants to be a DJ, wants to spend time learning the tricks of the trade with an established DJ, we can pay for lessons out of our yearly allocation through the Self-Determination process.

But, as with any new program, there are a number of challenges, the primary one being sufficient funds in our individual “budgets” to begin with. Many regional center consumers currently receive only the most basic of services. In some cases, that is from a lack of knowledge — parents don’t always have a clear idea of what they should ask for, and not all caseworkers have the same level of expertise. And, sometimes, there’s not enough money to cover all the needs.

Also, families who volunteer to be part of the initial wave of 2,500 may not be selected, as the law calls for a diverse mix of diagnoses, geography and ethnicity, and there are not many slots set aside for each regional center. For example, I just learned that Lanterman Regional Center, where Danny receives services, will be allotted only 74 slots during the first stage. After three years of field-testing, Self-Determination will be available to all.

But despite these concerns, I am eager for Self-Determination to begin in California. Just as we as a people learned how to think for ourselves after leaving the slavery of Egypt, so, too, will these new freedoms result in exciting new possibilities for a group of people who have very little control over their own lives. 

Michelle K. Wolf writes a monthly column for the Jewish Journal. Visit her Jews and Special Needs blog at jewishjournal.com/jews_and_special_needs.

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