Creating a Foundation for Growth (cont.)

By September, 1995, all of the group homes were closed and people were living in homes that either their parents had purchased or that they leased. Several opportunities and strategies contributed to the agency's success in such quick change.

The JNCS board, which consisted mostly of parents of people receiving services, was personally committed to providing the best services available. A number of members believed in the concept of supported living and viewed it as "state of the art."

Jeff cultured the commitment and skills of a small team of administrative staff who personally took responsibility for meeting with individuals and their families to discuss their concerns, fears, and plan new living situations.

Early in the planning process, the agency began to clarify the issue of where decision making power should lie. Though the concept of supported living is grounded in the principle of supporting the choice of individuals, JNCS viewed this principle as a complicated one. First of all, many of the people the agency supports have not had the opportunity to know what they want in their lives and to complicate matters, many do not communicate their needs clearly. Second, JNCS has a history of strong parent involvement. As Jeff explained, "Because of the heavy family involvement, people are not going to stand up, not right away at least, and say, `Mom and Dad, I don't want to hear you anymore, it's my life'...not only would we be hurting the family, we'd be hurting the person, by trying to get them to draw this line, saying it's my decision now." The agency moved forward with the stand that supporting individuals also meant supporting their families.

With respect to the needs of families to learn more about supported living, the agency provided the opportunity for them to learn from those who had begun the process of supporting their sons and daughters to live in their own homes.

There were some families who did not want their sons or daughters to move into a home of their own. JNCS respected their decisions and even though the agency would no longer operate group homes, these families were supported to choose alternatives. Some of them chose to seek services through another agency, and a couple of people moved back home with their families. In another situation, several people continue to live together through an arrangement in which the former manager took proprietorship of a group home.

There were many staff who did not support the agency's new direction. After the initial period of giving people the opportunity to learn more about the approach, there was the expectation that staff be either "in or out." Overall, the agency had a tremendous amount of staff turnover during the transition. New staff are hired based upon their belief in supported living. Though administrators believe in providing extensive opportunities to learn, they are convinced that someone must first be open to the approach.

JNCS made an agreement with the state that it would shift to supported living services without asking for increased funding. At the time, the cost of running the group homes was very high. Jeff believed that it would continue to be costly to support some individuals, but that many people would be more satisfied in homes of their own, have less behavior problems, and therefore need less support. The agency also managed an agreement to receive their funding in a lump sum to allow for more flexibility. In fact, the overall cost of supporting people has decreased over time.

Several sources of funding were made available to facilitate the moving process. The agency was awarded eighteen Section 8 slots through the Department of Housing and Urban Development that provided affordable rent for some individuals. A couple of other sources helped with initial expenses. The Autism Society of Los Angeles created a $50,000 pot of money from which people could take no interest loans to cover security deposits and first month's rent in some cases. Individuals could make their own repayment arrangements. In addition, the state provided each person $500 for necessities such as washing machines and refrigerators.

By September of 1995, the agency supported 57 people to live in homes of their own. Thirty-one people lived in houses that they rent or their parents purchased. Nineteen people rented apartments or condominiums. Forty-five of these individuals receive support 24 hours a day, seven days a week. About half of them have roommates who provide support. These situations are arranged with a combination of Medicaid waiver funding, supported living funding from the state, in home support services funding from the county, and people's Supplemental Security Income benefits.

According to the majority of families and staff see that the lives of people have improved significantly with the opportunity to move into places of their own. Most people are confident that this was a good move. However, there are still a number of people who range from uncomfortable to "angry and bitter" with the way things were done in this conversion process.

There were some things that in hindsight people wish that they would have done differently. For example, Jeff explained he would have closed the group homes one at a time. He was concerned that a number of people were shuffled from one home to another in the closure process.

On the other hand, the decision to move quickly, which was the most difficult part of this shift, for families as well as staff, was one that many people still stand by as a good decision for the reasons stated above. Agency administrators, however, have maintained an awareness of what this quick change meant for most people. Jeff concluded, "I think the reality is maybe only a half a dozen people, at maximum, went into supported living you know with a clear idea of it...Most of the people just followed."

Providing the opportunity for people to move into their own homes was the first step in this agency's development of supported living services. Members described it as a necessary foundation for supporting people to live the lives they choose. They no longer live in places that are owned or necessarily controlled by the service system.

Moving Forward and The Differences in People's Lives