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One Person at a Time
How One Agency Changed from Group to
Individual Services for People with Disabilities
Patricia FratAngelo, Marjorie Olney, and Sue Lehr

People with significant developmental disabilities don’t have to live in institutions, large congregate facilities, or group homes. They can live in homes of their own choosing, with the people and supports they want and need. One Person at a Time chronicles how one agency left behind group home models to pioneer individualized housing and support, called supported living. It is the story of one agency’s quest to serve people based on what each person really wants and needs, rather than fitting people into pre-existing models.

As a provider of residential services, Onondaga Community Living operated several group homes. These homes included many people with complex support needs. As staff and board members became better acquainted with the people being served, they began to wrestle with the question of what was best for the people in these residences and for the others who were being referred. With these discussions came a realization that change was needed. Thus began a journey that led to the closing of group homes and the development of new supported living service...One Person at a Time.

Contents
Learning to Change the Boundaries • Parent Perspectives • Staff Perspectives and Roles • Who’s in Charge? • The Challenges of Organizational Change • Getting Past the Naysayers • What the Future Holds • An Ethic of Modesty in the Support of Others
SCROLL BELOW TO READ THE FOREWORD BY STEVE TAYLOR, CENTER ON HUMAN POLICY.

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Steve Taylor, Center on Human Policy, Syracuse University

In human services, change is complex. It is commonly assumed that change happens—and, in fact, can only happen—from the top down. The assumption is that if the right laws, regulations, policies, or funding mechanisms are put into place, then changes will occur for people with developmental disabilities and their families. Of course, these things can make a difference. If regulations and policies encourage segregation or if funding mechanisms pay only for institutions and congregate settings, then it is unlikely that people with developmental disabilities will have the opportunity to participate in community life.

Yet top-down approaches have severe limitations in bringing about changes in people’s day-to-day lives. Nowhere is this more apparent than in the case of “individualized” approaches for supporting people with developmental disabilities.

Many states recently have adopted policies and funding mechanisms to support new approaches such as “supported living,” “self-determination,” or “person-centered services.” In many cases, however, these new service approaches bear a striking resemblance to traditional models. For instance, small group homes may be referred to as individualized services. New policies are not enough.

Bottom up change strategies are also important. We need good examples of truly individualized and responsive services and descriptions of how these services are experienced by people with developmental disabilities and their families. By documenting good examples, we can differentiate between new and traditional approaches. When good examples are clearly described and publicized, they can have an effect far beyond the specific people served and contribute to change in subtle, but significant, ways.

Onondaga Community Living, or OCL as it is popularly known, is a good example of an agency attempting to provide responsive and individualized supports to people with developmental disabilities. This book, written by OCL director Pat Fratangelo along with Marj Olney and Sue Lehr, tells the story of OCL.

What can we learn from this story? Each reader will draw his or her own conclusions. Having followed OCL closely for over ten years and read this story carefully, I will provide some of mine.

First, very good things sometimes do come in small packages. OCL is a small agency; it provides residential supports to thirty-seven people and vocational or day supports to an equal number. By virtue of its small size, OCL can undergo agency-wide change much more readily than large bureaucratic agencies. In addition, the small size of the agency encourages personalized and responsive services. Administrators are not separated from the people served by multiple levels of organizational structure, but know them on a personal level. An agency cannot be “person-centered” unless it is personal.

Second, leadership matters; it matters a lot. When Pat Fratangelo took over the position of executive director of the agency in 1990, OCL was a relatively traditional group home provider. Pat brought to the agency not a commitment to a particular model of service, but a set of values that stressed the importance of putting the person before the program. Before long, these values led to an open questioning of the future of OCL’s group homes. One has been closed, and another is sure to follow, simply because this model is inconsistent with the values of the leadership of OCL.

Finally, a committed leader is a necessary, but not sufficient condition for agency change. More than a few committed leaders have had their efforts thwarted by resistant boards. OCL has a board that has been open to change and willing to take political risks. Many of the board and committee members associated with OCL are parents of people with developmental disabilities. For some of these parents, the prospects of change have not been easy. Just as institutions represented security to the past generation, group homes represent security to many of today’s parents. It has taken courage for the parents associated with OCL to set aside their own concerns to ask what is best for their sons and daughters and to trust that OCL will be there for people in the long run.

Real change will happen one person and one agency at a time. From this perspective, OCL’s story needs to be heard. Thanks to Pat, Marj, and Sue for telling it.

Steve Taylor
Center on Human Policy
Syracuse University