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Self-Determination Pilot Project

When asked why they chose self-determination for their two daughters, Leah and Rachel, parents Pauline and Joe Utar don't talk about a strong proactive effort to participate in the pilot. "When we came to a meeting about this the first time, self-determination was a blank. We didn't know what it would mean or how it would impact us, "says Pauline Utar. Nor did the Utar's enter the pilot because of problems with the Regional Center system. "We didn't want to leave the old system. We had a case manager to help us."

When the Utar family decided to try a completely new way of service delivery, in November 1999, they had some very specific reasons for doing so. Says Joe, "One advantage of Self Determination was that you don't have to use a vendor. We wanted to set up our own program and be more focused. Self determination is a way to be able to focus and support our daughters - to meet their goals and their needs. In addition they liked the principles of Self Determination - freedom, authority, support and responsibility - which they describe as, " in keeping with our own values." They like the idea of keeping to, and yet controlling a budget, and bargaining for what they want as most people have to do.

The Utars, who are from Thailand, but whose daughters were born in the U.S., also see Self Determination as consistent with American values of opportunity, freedom and equality. When Leah and Rachel were born prematurely and with disabilities, says Pauline, "Our vision was for them to be alive. We just kept thinking about healthy lives. Now our vision is to see our kids included in the community. Instead of waiting for society to help us, we want our kids to go out and help the community."

Realizing that vision has not always been easy. "You have to change society. Many people don't accept it (disability). The challenge is to educate society. Instead of waiting for society - what can they do to help society?" In keeping with this philosophy the Utars used some of their Self Determination funds to select a good personal aide to get out in the community with the 15- year old twins, because as Pauline says, "I can't go everywhere with them." Among other things the personal aid assists Leah and Rachel on monthly trips to a downtown mission to feed people who are homeless. The girls also sing and play piano and are invited to play at churches and other community organizations. As a result of their contributions, Pauline says her daughters are accepted in the community.

Pauline Utar says, "We are lucky parents to be accepted in Self Determination." She now realizes that disability or not, "Every kid has a gift, every kid has a challenge. If you work for your kid, if you fight for your kid anything is possible."

Because of the positive changes in Leah's and Rachel's lives, the Utars say without hesitation, "Self Determination is the way to go."