Call to Action: Help Expand the Self-Determination Program!
California’s Self-Determination Program, a voluntary alternative to the traditional way of providing Regional Center services, is slated to become open to all individuals who are eligible for Regional Center services starting in June. It allows participants to have more freedom, control, and responsibility in selecting services and supports to help them meet their objectives, which are laid out in what’s called a Person-Centered Plan. Participants or their parents or legal representatives are given a specific budget for their services and supports, and they can choose their providers and make decisions. With Self-Determination, the individual is truly in control of their future.
The bill that allowed for the creation of the program, which is run by the Department of Developmental Services, was signed into law by Governor Jerry Brown in 2013; the law was written and supported by individuals with developmental disabilities and their families. During the first three years of the program, enrollment was limited to 2,500 people, but the law states that the program will be open to anyone who is eligible and interested after the first three years; this is slated to happen in June 2021. But after a State Senate Budget Subcommittee hearing to discuss the implementation of the program on February 23, some senators questioned whether the Self-Determination Program should be expanded in June because of low levels of current participation.
Why Are the Participant Numbers Low?
At the hearing, DDS representative Brian Winfield said that 499 Regional Center consumers have transitioned into the Self-Determination Program as of February 19, 2021. He noted that while data shows an upward trend in participants (at the beginning of 2020, there were just over 100 participants), it’s hard to tell what effect COVID has had, as some people haven’t felt ready to transition at this time. DDS’s Nancy Bargman also noted at the hearing that it’s not unusual for new programs to roll out slowly and take a while to build momentum.
We spoke with Linda Chan Rapp, Chair of the Harbor Regional Center Self-Determination Program Advisory Committee, who told us that 85 percent of participants want to stay in the program but either have too much on their plates or want services that are not appropriate or available during the pandemic. She added that “it’s widely recognized by participants that this is a program with a lot of potential to transform lives.” One of Linda’s concerns is the difficulty for non-native English speakers to access Independent Facilitators and Person-Centered Planning, which is something we are working on at Special X.
But this doesn’t mean the program shouldn’t be opened up to anyone who is eligible and interested: participants will likely increase as more people learn about the program, and as COVID cases decrease and more people are vaccinated.
What Are the Benefits of Self-Determination?
The five principles of Self-Determination are:
- Freedom (to plan a good life)
- Authority (over your personal resources)
- Support (for building a life in the community)
- Responsibility (and pride in making your own decisions)
- Confirmation (of the important role you play)
To learn more about the program, check out this plain-language explainer put together by the Westside Regional Center.
Special X’s Carla Lehmann, an Independent Facilitator for the Self-Determination Program, explained to us what the program is and what it means to the families she works with.
“As an Independent Facilitator, I see the benefits of the Self-Determination Program every day. I work with clients who were previously underserved, but were able to increase their budgets to meet their child’s needs through the Self-Determination Program. This vital program gives participants the flexibility to choose the services and supports that best meet the needs of their child and unique situation. For example, participants can access individualized recreational activities such as swimming, sports, drama, and music, which are no longer accessible through Regional Centers.
Participants can hire service providers who live in the same household, like an adult sibling, grandparent, or even a teenage sibling with a work permit. This can’t be done in the traditional system. The participant can also pay their providers a fair salary, which keeps providers happy and motivated. I have seen how beneficial this has been during the pandemic, as it can be difficult to find and keep quality employees. The participant can hire providers that are not vendors of the Regional Center, and they don’t have to wait for a spot to open up.
Participants can also purchase equipment to help meet their needs, which is not possible in the traditional system. For example, they can use their budget to purchase a communication device, computer, GPS tracking system, iPhone, iPad, trampoline, bicycle, or even a virtual reality headset (they just have to prove how the item will help them meet their IPP goals).
The benefits of Self-Determination are so immense that it is hard to describe them all. Focusing on the individual’s strengths, abilities, and goals through the Person-Centered Plan and giving them flexibility and control is so important. It requires a little bit more work in the beginning, but in my opinion, it is well worth it! I can’t wait for the Self-Determination Program to be open for everybody so we can all take advantage of these benefits for our loved ones and help them fulfill their hopes and dreams!”
Linda Chan Rapp echoed Carla’s sentiments: “Self-Determination is not a program that focuses on deficits; it starts with dreams and goals, and works to fill in supports to make progress toward the individual’s preferred future.” She added that she thinks it would be very exciting for a school-aged parent to “have a vision of their child fully included in a meaningful way in their community and contributing to their community, and having the opportunity to explore their giftedness and discover what supports work for them.”
How Can I Help?
Make your voice heard by emailing the State Budget Subcommittee and telling them that the program should be open to everyone in June, as the law promises. You can also watch the hearing here; scroll down to the column dated 02/23/21 and labeled “Senate Budget Committee #3” and click “watch” on the right-hand side. The portion on Self-Determination begins at 1:32:27. Fernando Gomez, vice president of Disability Voices United and father of a 14-year-old with Down syndrome, speaks about the value of Self-Determination starting at 2:24:010.
If you’re interested in learning more about Self-Determination, please let us know!