CREATING SUPPORT BASED ON THE PERSON VERSUS THE SYSTEM

Creating Support Based on the Person versus the System
The Story of an Organizational Change:
Onondaga Community Living, Inc.

Patricia Fratangelo, Executive Director

BACKGROUND

Onondaga Community Living was developed in 1987 by a group of concerned citizens in Onondaga County who wanted a greater array of services and supports to be available to those with developmental disabilities within this county. They came together as a voluntary board of directors and made the commitment to develop a supervised residential service for as few people as they could afford economically. Their commitment was to quality, and they saw that could only come with a small number of people. Out of their dedication and commitment, the first 6-person group residence was developed, and within the next 3 years two more 6-person group living arrangements were also developed. The agency also began to see the virtues of the people they were supporting and felt that they could benefit from community employment. Thus, supported employment emerged within this agency to support the people within the residences.

Soon after the development of the third group residence this agency began to move toward more individualized services. These efforts began to move the agency from group arrangements to person centered developments. The new people being supported, along with their families and advocates, were beginning to be asked such things as where they wanted to live, who they wanted to live with, what kinds of supports did they really need, and what in community life was important to them.

This began a major turning point within this organization. When these questions were asked most people had something very different in mind from what we were currently providing. That led us to look at different ways of providing supports and supervision and moved us into different types of funding to enable this to happen. The agency now moved to separating services from housing. The people who were being supported now were signing their own leases or owning their own homes. The housing is uncertified which allows great flexibility on behalf of the person with the disability and their family. The supports are now tied to the person and not the property.

To date OCL has 18 people in group homes and 9 people in eight individualized homes. Of the 18 people in the original three group residences, 9 wish to live in a more individualized situation. As of this date we also have proposals in for funding of an additional four people for individualized services.

We are struggling with what to do with the vacancies that occur as people move out of the residences. After listening to the people who lived at one of the group residences and working with the families, it became apparent that each of the six people wanted to move out of this arrangement into places of their own. This would require us to look very differently at how each person would be supported through OCL, as they require various levels of support and supervision. After a summer of struggles and education with the Board of Directors, the board voted to support the individualization that each house member wanted, and rather than filling the vacancies within the house we would work to divest ourselves of this group living arrangement. This decision came after a lot of discussion, training and soul searching on behalf of the board members. At the beginning of the summer board members were leaning in different directions on the issue. By the end of the summer of 1993, with the support of leaders in the field, all but two members voted positively toward the individualization and the closing of the residence. Thus, a major change in the organization occurred, firming our commitment to person driven approaches, thereby recognizing that the group residence was in conflict with both our mission and the personal directions of each member within that house.

CREATING COMMON GOALS AND VISIONS

In order to provide individualized supports, it is important that the staff, the board and the people who are supported, with their families and significant others, share common goals and visions. The struggle from going from a systems centered to a person centered approach, and from a group living arrangement to individualized and diverse services is real and at times difficult. This is readily acknowledged and discussed. We have gained confidence and have become more critical over time through our own experience. We have also actively been involved in learning from the experiences of others. They needed to feel secure with their decision and could only do this by talking with and learning from others.

The board is not the only crucial piece in the organizational change. Families have the opportunity to be heard by the agency and are not pushed into making difficult life decisions about their loved ones. We work to support each individual based on the family's interests and desires. Training for staff is another critical piece. Staff need to know they are important and are heard. They are the people who are often the closest to those we support. We need to hear their excitement and their fears and work together on reasonable solutions to difficult issues. We work to identify the worries and concerns as we move through the planning and from this learn more about the safeguards that are necessary to make life more successful for the person. The importance of team meetings, board and staff retreats, learning from others and solidifying the organizational mission has done much to help us through this change process.

STRUGGLES AND DILEMMAS

Being recognized for our person centered approach is a blessing and a curse. For if we are to really remain as person centered as we are, we cannot do this for large numbers of people. We hope that by dedicating ourselves to those we are currently supporting, we will be dedicated to enable each person to live the life they want. As Jay Klein put it, we will be helping people to "have their lives back"--a life of their own, not the life of the system. We continue to question the issue of size and quality and realize that quality is depleted when the numbers grow larger. Yet on the other hand we again and again talk with families that are feeling crushed and frustrated by the system. Their issues may not seem difficult to us. So what is our role then? To take in more and more people, or to help them advocate for the services they really need with other organizations that should be able to mold themselves to meet the needs of a person? We also have the pressure of the closure of the local developmental center. What is our role with all of that? What can we really do to aid in the closure while continuing to ensure the personal commitment and quality for the lives of those we currently support?

The issue of planning for effective safeguarding is very real in each situation we plan for. We see that individual situations can be very fragile if not supported in the right way. Because individualization for people with 24-hour needs is relatively new in New York State, the experience has not yet materialized on the safeguards necessary. A house mate leaving could prove to be critical if the person requires the live-in support and no other person is yet identified before the house mate moves out. We work to plan for day to day and proactive safeguards such as these in each situation developed. We do this planning based upon each person's personal needs and personal resources.

Then beyond this we take it a step further to the safeguarding necessary within our organization. We believe that the person's residence is his or her own and that he or she will remain there no matter what the ups and downs that come with life. It is our belief that with adequate planning and funding availability, many crisis situations could be eliminated.

WHAT WE ARE LEARNING

We have found that by really listening to people and not the system, what works is often not the very system that they are part of. Each person has his or her own life, own desires and own needs. By recognizing these and not the parameters of the system, we have discovered that we must remain flexible and rid our minds of traditional models of support.

We have also discovered that there is a true capacity in the community. By believing in this we have watched and supported people to become a true part of their community with true community members for friends and support. We have watched and supported people to become volunteers at local groups and associations. We have enabled people to become a part of their community churches. But more importantly we have watched for the interests and magic that occurs as people begin to get to know one another in the community. We watch the spark get started and nurture and support the new found relationships. By supporting the relationship and not the person with the disability we have experienced the development of true friendships and support between the people we support and the members of the community.

We see ourselves on a journey through life with the people we are supporting. As they move down the road and hit the potholes and dead ends we see it as our role to support and guide them through it. We see ourselves as standing with people, not standing over or away from them. The nice part of all of this is that life is ever changing and you never really know where the path might lead to next. There is really no expectation, no model that is needed to conform to. Life is the guide and it is different for everyone.

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