Onondaga Community Living (OCL) is a private organization in Syracuse, New York. It is a small agency that supports 30 adults with developmental disabilities and employs 40 staff. OCL currently operates three group homes but has been working over the past few years to develop individualized services.

In April 1995, OCL board members and staff hosted a team of five visitors: Kathy Hulgin, Linda Kahn, Jo Krippenstaple, Connie Lyle O'Brien, and John O'Brien, sponsored by the Center on Human Policy, to reflect on their accomplishments and challenges. The visitors gathered stories of personal and organizational change from the point of view of nine people OCL supports through individualized services (7) and group residences (2), members of their families, their housemates and assistants, OCL staff, and present and former board members. This report (in an abbreviated version) explains some of OCL's accomplishments and challenges.

The title, "Deliberate-Fire," came up as the visitors talked about the challenges arising from OCL's succeeding more rapidly than its leaders had planned. OCL has created effective individualized supports for people by carefully considering opportunit ies to realize its values for one person at a time. This deliberate process has generated growing commitment to a new mission, new capacities, new skills, and new expectations. Like fire, this commitment changes what it touches irreversibly, and in ways that are difficult and a bit dangerous to control. OCL's methodological demonstration of its ability to act on what staff hear from the people they assist has fired the imagination of more and more of the people and families OCL serves. They see other people living with individual support and they want similar changes for themselves. Reasonable demands, that accelerate faster than the agency's capacity to deal with them, call for a new kind of learning: learning to more rapidly invest agency resources in its best practices. If deliberateness dampens the fire sparked by board and staff commitment to OCL's mission, the agency's spirit is at risk. If fire consumes the agencies ability to take thoughtful steps, OCL's capacity to act for people is impair ed. The next chapter of OCL's development will be strongly influenced by its leaders' ability to handle deliberate-fire.

Onondaga Community Living's Mission is to empower and individually support people with developmental disabilities in their efforts to live full lives as integral, respected members of the community.

• Respect for the dignity and worth of each person with a developmental disability. The agency has made a decision to stay small, supporting "about 30" people, to maintain a personal approach to services.

• Recognition of the vital role of families in assuring that supports are of good quality.

• A desire to offer people state of the art services which involves a willingness to be assertive in relationship to local and state Office of Mental Retardation and Developmental Disabilities (OMRDD) officials, gaining their support of innovative efforts.

• A strong relationship with people outside of OCL who support the development of community services.

• In the first half of its history, OCL realized these values by establishing and operating three small group homes. In 1991-92, OCL began to offer individualized support to people who were newly referred to OCL. In 1993-94, OCL began to provide individualized supports to people moving out of group homes, and in 1994, the OCL board decided to fund all of its supports under the Home and Community Based medicaid waiver program, reduce the number of people served in group homes, and to move toward closing one group home.

• Board and staff members have a growing appreciation for the benefits of individualized supports. It seems clear to most of them that the OCL mission points to individualized services.

• Board and staff members have a deepening sense of the limitations imposed by the design and logic of their group homes. One staff member concluded, "We used to be able to tell people that the reason they can't have their own place was because they hadn't learned the skills they needed to move on. Now we know that's not true."

• The planned closure of one of the group homes which began in response to the expressed desire of three residents to move, has shown effectiveness with which staff have learned to plan with people and their families. Careful listening over time, to personal and family aspirations, fears, and concerns, combined with creative problem solving, has lead to feasible individual support plans for all the six residents, including three women who did not request a move before the process of exploring the future with them began. Recognizing this capacity means reconsidering two assumptions: a) that the group home is "right" for some people and not for others and b) that OCL's role is to wait until a person or a person's family clearly says that he or she wants change. OCL staff now know that they can make a substantial difference in the confidence people and their families have to see and work on new possibilities.

• OCL has successfully negotiated a plan to close one group home with OMRDD. Board and staff are now developing the way to sell the group home.

• Demand for individualized services from people OCL serves in group homes grew very slowly for three years. In 1991 all of the families declined an invitation to plan for individualized services. But, after growing very little for three years, demand has more than doubled in the past few months. Now, in addition to the people OCL plans to move from the group home already scheduled to close, people in each of the other group homes have specifically requested help to move. OCL's inability to respond to these requests in a timely way creates a conflict for at least two families: should they support the desire to move and create a problem for OCL, or should they support OCL's deliberate pace of change and delay their son or daughter in taking an important step in their lives. One resident of a group home expressed her frustration, "I want to move out, but I'm waiting behind the people from Oak Hollow (group home)."

• OCL has developed strategies for supporting some individuals to live in homes of their own including: accessing the most flexible funding sources available from OMRDD (HCB waiver and ISS funds); recruiting housemates, some of whom provide support i n exchange for free rent rather than for cash payments; and some staff have chosen to share their home life with people OCL supports without additional money compensation.

• Board and staff members have benefitted from a number of educational opportunities which have helped them see the links between their work and the work of innovators in supported living and housing. This continuing educational process accelerates their desire for significant change.

• "If we believe that individual support is better for people than group home living, and if we have the ability to work with people and their families in a way that is likely to result in a more individualized service arrangement, it seems inconsist ent with our mission to only respond to the most vocal people. We should be working to extend everyone's possibilities, but that means making some people wait for us to catch up."

• "The rationale for the group homes has been lost. As long as unresolved organizational issues (such as maintaining occupancy to pay mortgages) are a significant reason we are not planning with people we won't be living up to our mission. Life in the group home begins to seem like `life on hold'."

• "We have made positive changes by focusing on one person at a time, but that was easier to do when we were dealing with one external referral at a time than it is when we turn to the people living in our group homes. The people in our group homes are individuals who are so tightly linked to the other people who live with them that we can only respond to them as individuals by dealing creatively with the group. One person's move could affect the financial balance of the whole agency. The obvious alternatives - moving new people into `empty beds' or continually moving people from one home to another to keep them one of a moving group - does not fit our values."

In the first chapter, the organizations's learning task was to become stable and solvent as a group home provider. In the second chapter, which is just closing, OCL's primary learning task has been to support people one person at a time. The current chapter, which is just opening, calls for transformation of existing resources to allow each person well planned individual supports.

Of course, the lessons of previous chapters remain to be learned and relearned. The need to transform existing resources does not take away the need to remain solvent or the need to continually improve the ability to provide individual supports. But meeting the challenge of increasing demand from people OCL is already committed to puts both of these tasks in a new context.

In our visit with OCL, we did not develop a plan to follow in their future efforts, but we offered three possible steps for discussion and amendment by OCL's board. It is important to note that these are the visitors conclusions and ideas, based on ou r interviews.

First, develop a public statement on OCL's mission which clearly states that OCL intends to move to the provision of individual supports as soon as specifically stated conditions are met and that OCL does not believe that the operation of group homes i s consistent with its mission. This statement may cause some concern among the families of people now living in group homes, so it needs to be developed in cooperation with them, providing them with the opportunity to understand that individualized servi ces does not mean living alone or without support. Given the local priority on deinstitutionalization and resulting pressure to develop small group living arrangements, the development of this statement should also involve local OMRDD officials, providin g the opportunity to negotiate alternative ways for OCL to contribute to this effort.

Second, identify the key resources required to provide individualized supports for all of the people OCL is committed to serving and organize ways to further develop each resource. We identified six key resources.

• People with disabilities can make substantial contributions if given opportunities to think about and participate actively in improving the situation that faces OCL.

• Many families can make a significant difference in the resources available to the people OCL supports. Family to family exchanges about what people have learned about planning, homes, supports, and dreams might extend these resources.

• Expanding the capacity to plan and develop with individuals is perhaps the most fundamental resource. It means more than building skills, it also means mentoring people to listen deeply, and negotiate conflicts creatively, and solve problems imaginatively.

• Maintain active support from OMRDD officials.

• Develop the capacity to generate resources outside the OMRDD system.

• Make responsible use of existing properties by carefully considering the range of options for best use of all three unnecessary properties.