Self-Determination Pilot Project

Testing the Ability to Have Choice and Control

In 1998, California embarked on an experiment to test self-determination in five regional centers. Two hundred participants have participated for over two decades from the following regional centers: Redwood Coast Regional Center, Tri-Counties Regional Center, Eastern Los Angeles Regional Center, Kern Regional Center, and San Diego Regional Center.

Each self-determination pilot is advised and directed by a local advisory group consisting of participants, family members, and other interested community members. Each pilot has a unique approach to self-determination. For example, each pilot had a different target population and goal. Eastern Los Angeles Regional Center hoped to reduce ethnic disparities, while Kern Regional Center offered self-determination to all consumers in two very rural counties where traditional service providers were hard to find. Even the use of fiscal intermediaries (FMS) and support brokers (independent facilitators) vary across the pilots.

In 2002, the Department of Developmental Services issued a report showing that participants and families at all pilot regional centers stated that they feel lucky to have been chosen for self-determination and that they are happy and satisfied. They said they experience more freedom and responsibility in controlling the direction of their services and their life choices. The pilot participants also reported a changed relationship with their regional center service coordinators because they handle their own service dollars, have more responsibility, and feel in charge of their life and services. Ultimately, they said, they have hope for a different life under self-determination.

Each pilot also has encountered similar, fundamental issues. For example, they learned that:

• Designing a participant’s individual budget is not a simple task and is inextricably linked to intensive, high quality person-centered planning.
• To date, only one fair hearing has been sought over the amount of an individual budget  
• All pilots were cost-neutral in the aggregate.
• Comprehensive person-centered planning is essential to self-determination.
• The pilot projects confirmed, through extensive person-centered planning, that some people have unmet service needs that can be met through self- determination. Pilots also found that planning may help identify generic resources to meet some of the needs that self-determination couldn’t fund.
• Good self-determination also requires collaboration and continuous support. During the first year of planning, the roles of the independent facilitator and service coordinator are more intense, but in subsequent years, participants take the lead on their person- centered-planning; as a result, the role of the service coordinator and the independent facilitator are lessened.
• The requirement that participants must use generic resources before regional center funds were an issue in the pilot. Pilot regional centers found that participants asked to use self-determination funds to pay for services that should be funded by another agency often because of “dissatisfaction with, or delay in provision of, services by that agency.”

The report also found that traditional service providers had not been very involved in the pilots. Many service providers were concerned that “self- determination will not look much different than current practice, and they perceive that the regional centers will still be in control.” They were also uneasy about how self-determination “may negatively affect their business operations and the quality of services provided.” For example, they expressed apprehension that their high turnover rates may increase further if participants hire staff away from their agencies.

Regional center staff also had interesting views of the Self-Determination Pilot Projects. Some felt that “self-determination is bringing their staff back to the ‘touchstone’ of what brought them to the disability profession.” Other regional center staff, however, experienced “some strain in implementing flexible service delivery for self-determination within their agencies that have a history of providing less than flexible service options.” Many regional center staff felt that self-determination is “a radical idea.”

We have much to learn from the Self-Determination Pilot Projects that still exist and much to gain from understanding how the participants have increased their quality of life. Their path is one that many thousands of others will now follow. This section of the book checks in – 20 years later – with several participants, a service broker (now called an independent facilitator), and a financial manager. They are the best possible guides we have!