What is Self-Determination?

Self-determination is a life changer for the person and a game changer for the system. At its core is the revolutionary idea that people with disabilities are in charge of their own lives, not the professionals or systems that support them. We believe that self-determination will not only encourage individuals and families to “think outside the box” about the kinds of lives they could lead, but it will also stimulate discussion on how the traditional system can become more person- centered and provide more choice and control for the people they serve.

The Principles of Self-Determination

• Freedom, which includes the ability of adults with developmental disabilities to exercise the same rights as all citizens; to establish, with freely chosen supporters, family and friends, where they want to live, with whom they want to live, how their time will be occupied, and who supports them; and, for families, to have the freedom to receive unbiased assistance of their own choosing when developing a plan and to select all personnel and supports to further the life goals of a minor child.
• Authority, which includes the ability of a person with a disability, or family, to control a certain sum of dollars in order to purchase services and supports of their choosing.
• Support, which includes the ability to arrange resources and personnel, both formal and informal, that will assist a person with a disability to live a life in his or her community that is rich in community participation and contributions.
• Responsibility, which includes the ability of participants to take responsibility for decisions in their own lives and to be accountable for the use of public dollars, and to accept a valued role in their community through, for example, competitive employment, organizational affiliations, spiritual development, and general caring of others in their community.
• Confirmation, which includes confirmation of the critical role of participants and their families in making decisions in their own lives and designing and operating the system that they rely on.

The Story of California’s Self-Determination Law

In 2012, six ordinary people met and did an extraordinary thing. While at a restaurant across from the Burbank Airport, they sketched out a plan on the back of a napkin to pass a law for self-determination to ensure freedom, authority and choice to individuals with developmental disabilities. The six people included Judy Mark and Connie Lapin, parents and co-chairs of Government Relations of the Autism Society of Los Angeles; Michal Clark, parent and then executive director of a regional center that was part of the self- determination pilot project; Marnie Clark, self advocate; Harvey Lapin, parent and longtime disability activist; and Catherine Blakemore, Executive Director of Disability Rights California.

The six agreed that the developmental services system was broken and that change was needed. They were aware that the federal government, through its funding of community Medicaid services, was moving the states towards person-centered service models that allowed consumers more choice and control. Although California had a successful self-determination pilot program that began in 1998, attempts to pass legislation to expand this program had not yet been achieved.

The initial six formed “The Dream Team” but were soon joined by Allen Erenbaum, parent and attorney; April Lopez, parent and member of the State Council on Developmental Disabilities, Mark Polit, parent and SEIU staff, and Cathay Liu, parent and service broker in the pilot. There was clear agreement that the program would be voluntary and statewide, include diverse, underserved communities, and be open to all individuals with developmental disabilities served by regional centers. The team mobilized and went to work.

It was apparent that to succeed, a bipartisan effort was needed. In December 2012, Harvey Lapin

called Senator Bill Emmerson, a colleague in the dental profession, and asked him to have a conversation. Harvey and Connie met the Senator in his local district office in San Bernardino, where he readily agreed the plan was a significant bipartisan issue and offered to author the bill. Many wonderful legislators enthusiastically united over the effort and agreed to be co-authors, including Senator Jim Beall and Assemblymembers Bob Blumenfield, Wesley Chesbro and Holly Mitchell. The authors introduced Senate Bill 468.

Some groups thought that the bill had no chance of passage. But they underestimated the sheer will of the self-advocates and family members. No opposition challenged the bill as it moved through the Senate. SB 468 passed easily in the Senate Human Services Committee and unanimously on the Senate floor. As the bill moved into the California Assembly, however, those interested in keeping the status quo started to get active. No group ever officially came out in opposition to SB 468 — it would be politically incorrect to argue publicly against it — but some questioned the need for self- determination during a hearing in the Assembly Human Services Committee. Yet even those questions didn’t damper the clear enthusiasm for the bill, and it passed without a single “no” vote.

The bill was then sent to the Appropriations Committee and put on “suspense,” which means the cost of the program would have to be determined before moving forward. At that point, those wanting to maintain the status quo attempted some behind-the-scenes maneuvering and tried to make the case for a $6 million cost for the bill, which would have essentially killed it. But the authors and sponsors had compelling evidence – backed up by the Department of Developmental Services (DDS) – that the Self-Determination Program would actually bring in almost $3 million dollars a year in additional federal funds stemming from the match from the pilot participants. The bill passed unanimously out of the Appropriations Committee and on the Assembly floor.

It was then time to put pressure on Governor Brown to sign the bill. The Governor was known for vetoing bills with little explanation, so those same folks from the Burbank restaurant had one final hurdle. They reached out to thousands of self-advocates and family members to encourage them to let Governor Brown know the importance of self-determination to them. It was reported that the Governor’s Office received more calls to sign Senate Bill 468 than any other health-related bill. Governor Jerry Brown signed this groundbreaking legislation into law on October 9, 2013. It was an incredible celebration for the disability community.

The credit for the passage of the Self-Determination Law must be shared with the hundreds of self-advocates and family members who made calls and wrote emails pushing for its passage, such as David Oster, a self-advocate who called the Governor multiple times every day. Great recognition must also be given to the tireless hours and commitment of Catherine Blakemore and Evelyn Abouhassan of DRC and the incredible guidance from DDS Director Terri Delgadillo. The disability community couldn’t have asked for a better author than Senator Bill Emmerson, along with his amazing staff, Teresa Trujillo and Joe Parra, as well as other legislative staff who helped steer the bill, such as Mareva Brown, Peggy Collins, Lyn Shaw, and Sydney Kamlager. Also in

the legislature, the bill had essential support to push it over some significant hurdles from Assemblymember Mike Gatto, Dario Frommer, Bob Hertzberg, and Andrew Govenar.

“The Dream Team” has remained passionately involved in the implementation of the law as members of the DDS Self-Determination Workgroup. The group began meeting in December 2013. It has often been a frustrating 5 1⁄2 years since the law was passed, but the Self-Determination Program is finally here! Unfortunately, none of the “Dream Team” members were selected for the phase-in of the program, but they remain committed to staying active. They want to ensure that the Self-Determination Program is successful so that, one day, their children, and every person with developmental disabilities in California, can benefit from freedom, choice and control over their lives.

Overview of California’s Self-Determination Program

California’s Self-Determination Program (SDP) provides individuals with autism, cerebral palsy, epilepsy, intellectual disabilities, and other developmental disabilities and their families with more control and flexibility over the services and supports they need. Self-determination is a voluntary regional center program that provides participants with an individual budget, which they can use to purchase the services and supports they need to implement their person-centered plan (PCP) and Individual Program Plan (IPP). For example, participants and families may purchase services from traditional providers or local businesses, hire support workers directly, or negotiate unique arrangements with groups and individuals in their communities.

The SDP is based on a 20-year old pilot project in which almost 200 individuals participated in a test of self-determination in five regional centers. The pilot program has been a resounding success and, after many attempts, it is finally being expanded throughout California.

The Self-Determination Program will be phased in over three years. On October 1, 2018, DDS randomly selected the first 2,500 participants based on geographic and racial/ethnic diversity. On June 5, 2021, the program will be available to all eligible individuals on a voluntary basis with no limit on the number of participants.

Eligibility

To be eligible for the program, you or your family member must:

• Have a developmental disability and currently be receiving services from a California regional center OR be a new client of a regional center
• Be over the age of three or, if under, be qualified for services through the Lanterman Act
• Live in the community and have free choice in your life. You are not eligible if you live in a licensed long-term health care facility, unless you are using it to transition from that facility

You can continue to participate in the Self-Determination Program even if you move to another regional center. If you voluntarily choose to leave the Self- Determination Program, you can go back into the traditional regional center system, but you cannot return to the SDP for at least twelve months.

Implementation at Your Regional Center

Each regional center is required to have a Self-Determination Local Advisory Committee. They are responsible for oversight and monitoring progress of the Self-Determination Program and can make recommendations for improvement to DDS. They are mostly self-advocates and family members who are appointed by the regional centers and the regional offices of the State Council on Developmental Disabilities. The Clients’ Rights Advocates of Disability Rights California are also a part of the committees. The committees’ meetings must be put on the regional centers’ websites, and everyone is welcome to attend. The local committees will be working with the regional centers to hold the orientations and ongoing trainings of the participants and the general community. The State Council on Developmental Disability also convenes a statewide advisory committee, made up of the chairs of the 21 local committees, to identify best practices, design effective training materials, and make recommendations for improvements in the Self-Determination Program.

Learn More about the Self-Determination Program

• Attend meetings of your regional center’s Self-Determination Local Advisory Committee.
• If you have been selected as a participant, you can start creating your person-centered plan before your orientation and hire an independent facilitator using regional center funds. Ask your service coordinator!
• If you weren’t selected as a participant in the first selection, there will be future random selections as some participants drop out of the program. If you didn’t sign up for the lottery in the first round, you can be part of future random selections if you attend an informational meeting and have your name submitted.
• Join the Disability Voices United’s email list and Facebook page to find out about our activities and advocacy around the Self-Determination Program. Sign up at Disability Voices United.