by Kathy Hulgin

1996

INTRODUCTION 

Jay Nolan Community Services (JNCS) is a non-profit organization that provides a range of services to people with autism and other developmental disabilities in Los Angeles, California. Since January, 1993, this agency has made remarkable changes in the way that it provides residential services. It has moved from operating group homes to supporting people to live in their own homes. This report is based on a visit to JNCS in November of 1995.

JNCS was formed by parent members of the Autism Society of Los Angeles in 1975. This history is important in understanding the agency’s growth. JNCS was developed as an alternative to institutionalization for people with challenging behavior. It is driven by parents who have been actively involved in advocacy, legislation, and service development on local and national levels. They are aggressively interested in providing quality services for their sons and daughters.

By 1992, JNCS provided residential services to 65 people in 13 group homes. The process of shifting away from this service approach began when most members agreed that these individuals were not receiving responsive services. In fact, several of the homes were considered dangerous places to be for residents and staff, many of whom were getting injured regularly. Furthermore, there were growing tensions between administrators, staff, board members, and family members about who was responsible for this.

In response to these growing tensions, the agency invited a group of outsiders, people with experience in innovative services, to conduct an evaluation of JNCS. This evaluation was a pivotal point in the agency’s growth. It provided a clear and harsh criticism of the agency’s services, particularly the residential program, but also made enthusiastic and specific recommendations for change.

CREATING A FOUNDATION FOR GROWTH: GETTING PEOPLE THEIR OWN HOMES 

As a first step toward change, JNCS recruited as its Executive Director a member of the evaluation team, Jeff Strully, who was particularly passionate about setting a new direction for the agency. The agency was attracted not only to his passion, but also his experience. He has children who have disabilities and has been very innovative in developing integrated services and opportunities for them. Jeff also has many years of experience in working to create integrated services within the broader system. When he came to JNCS he had a strong vision of developing integrated services for the people living in the group homes.

Initially, Jeff provided the opportunity for members of the agency who were interested to learn about community living. The agency hosted discussions with outside consultants and sponsored members to attend training workshops and visit other innovative agencies. Jeff also personally worked to develop the opportunity for several individuals to live in their own homes. As interest in this alternative approach began to build, a significant number of people began moving out of the group homes.

Though the initial approach was to support people who were interested, there came a point when the agency made a decision to provide only supported living services. Furthermore, it established December, 1995 as a deadline by which it would no longer operate group homes. This decision was based on the following considerations.

Many people still living in the group homes were in crisis. Several parents and staff explained that things were so bad, they believed something needed to change.

An increasing number of agency members saw that the lives of people improved significantly with the opportunity to live in their own home. They began to view supported living not only as a good option, but as a preferable alternative to the group home approach.

Supporting people in their own homes required new practices and ways of organizing that conflicted with existing practices. For example, the agency began by having group home managers maintain a supervisory role with people’s assistants when they moved from a particular home. Over time, however, it was decided that it would be more effective to assign supervisory responsibilities based on relationships and geographic location of people’s homes. To provide effective support, it would be necessary to rearrange roles and responsibilities.

Lastly, as people moved, it became too costly to continue to operate the group homes with fewer people living in them.

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

JNCS is now working to develop ways of identifying and responding to the needs and preferences of individuals over the long term. As explained earlier, the individuals JNCS supports are only beginning to explore their preferences and to complicate matter s, most do not communicate clearly or directly. Historically, families and agency staff and administrators have been the decision makers for people, often not in a cooperative way. Based on the concept of “circles of support,” the agency is now working to support individuals and the people who know them best, including their families, and assistants to meet on a regular basis and develop a process of shared decision making.

THE DIFFERENCE IN PEOPLE’S LIVES

The following brief descriptions illustrate the changes that JNCS staff and families report have occurred in the lives of two individuals.

Shawn

Shawn is a 27 year old man who was one of first to move out of a group home. At the time of this visit, he had been living in his own place, a ranch home which he rents, for three years. He enjoys music and his walls are decorated with posters of some o f the musicians he likes.

Shawn receives support 24 hours a day, seven days a week. Jon, who provides most of this assistance has been supporting Shawn for 1 1\2 years. Louie, who used to work at the group home where Shawn lived, has been supporting him for over 6 years.

Louie was originally skeptical of the prospect of Shawn moving to live in own place. He described his time with Shawn at the group home as “non-stop crisis management.” Shawn was frequently aggressive and staff restrained him sometimes a couple of times a day. There reached a point when the agency was planning a police intervention for Shawn’s behavior and his parents were afraid he would be kicked out of the agency.

In retrospect, Shawn’s father explained, “It got so bad, something had to be done… and thank god.” All of the people who knew Shawn then and now believe this move was the best thing for him. He still has problems but they are much less frequent and hi s assistants have developed a good understanding of what makes him frustrated. For example, Shawn is described as very particular. He likes certain things in certain spots and as Louie explained, “It’s easier to accommodate Shawn now. It’s much more di fficult when trying to accommodate four other people.” Jon said he might have been “scared away” if he had known Shawn when he lived at the group home. He added, “When you get to know Shawn it’s fun. He has bad days, but it’s nothing. I understand why he gets mad because we’re friends now.”

Shawn works as a security guard at a medical building three hours a day, five days a week. One of his assistants accompanies him and provides a good deal of support to do this job each day. Afterwards they often enjoy going to the local Common Grounds coffee shop where Shawn has come to know the manager.

As the people in Shawn’s life are getting to know him better, he is more satisfied and has fewer problems. Shawn’s parents have changed the way they think about what he needs. For a long time, they assumed, “Jay Nolan can fix my kid and I can go to my g rave OK.” Now they are more actively involved and excited about Shawn’s future. He father concluded, “It is more involving with Shawn this way, so much more meaningful… The bottom line is that Shawn smiles a lot.”

Jim

Jim is also a 27 year old man. He is a soft spoken man who communicates with limited words and phrases and with some people, he types. He has spent many years living in institutions, including a state hospital where he lived from 9 to 14 years old. The n he moved to a group home operated by Jay Nolan where over the years he had many problems and was put on a great deal of medication to control his behavior. When his parents insisted that he be taken off the medication, he was admitted to a developmental center for this process, but ended up there for over three years.

Much of this time was spent in legal proceedings through which Jim won the right to leave the developmental center and receive services from JNCS again. Jim’s parents had concerns that supported living was not appropriate for him because he needed so muc h support. Through the opportunity to speak with other parents and Jeff, however, they decided to support Jim to get his own place in May, 1993.

The first several months in his own place were very difficult. Jim continued to break windows which has been a long time problem and did have up to three staff providing support at a time. JNCS did not approach this as a situation in which Jim had to pr ove himself as it might have in the past. Rather, the emphasis was on developing more effective support. Jeff took the stance that, “The return of Jim to the state hospital is not an option.”

During the first year, Jim had over 20 different assistants. His father believes staff changes and the lack of a good match for his son were a large part of his problems. He recalled problems with staff, “Most of whom were unable to accept Jim as a pers on and to communicate with him as a friend. Some attempted to control Jim, some viewed their job as babysitting, and others thought they had all the answers.”

Things have improved significantly over the past year. According to Jim’s father, he still has “occasional problems but at a level previously thought unattainable.” The biggest difference seems to have come through finding the right match in people to pr ovide assistance. At the time of this visit, Jim still received 24 hour support but only needs one staff at a time. He has had the same three assistants for over a year.

Jim has a job with JNCS delivering mail to the central office two days a week. He is learning to do his own shopping and banking and the tellers know him by name. For fun he likes to bowl and ride his bike in the park near his house. Staff have invited Jim to parties with their friends. Most recently, Jim had attended a party with his CLC and stayed out until 4:00 in the morning. Staff’s friends treat him like anyone else.

Jim’s parents, however, think this is not the same as having his own friends. This is one of their dreams for the future. They would also like to see him involved in more meaningful activities, particularly in terms of work. Jim’s father concluded that these are relatively minor concerns, given their history. Now that they see how good things can be, however, they have a sense of making up for lost time.

CONCLUSION 

JNCS has accomplished a great deal in a short amount of time. The process by which JNCS shifted to supported living services should be considered within the context of this agency. As agencies are making the shift from facility controlled services to supporting people to live in the community, they are doing so at different speeds and in different ways. The strategies that JNCS used were related to the agency’s circumstances and characteristics. As described earlier, the decisions to convert its services quickly seems to have made good sense in this particular agency.

In moving quickly the agency avoided the many pressures and compromises that come from operating two conflicting approaches at a time. This decision also presents certain challenges for the future. Though people are obviously more satisfied in their own homes, their living situations were arranged without a clear idea of their particular preferences. The challenge will be not only to assist people to identify their preferences but, to support those that may be different from their parents’ or staff’s.

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The preparation of this article was supported in part by the National Resource Center on Community Integration, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037. No endorsement by the U.S. Department of Education should be inferred.