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" or "person-centered"
approaches for supporting people with developmental disabilities.
Many states have recently adopted policies and funding mechanisms
to support new individualized approaches such as "supportive
living" or "family-centered supports." 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.
This is why the Center on Human Policy has invested considerable
time and resources in individual agencies that may serve a
relatively small number of people.
Most recently, the Center has been involved with an agency called
Onondaga Community Living in Syracuse, New York. In the following
article, Pat Fratangelo, Executive Director of OCL, tells the story
of the agency.
We started to work with OCL as part of a collaborative effort with
New York's Office of Mental Retardation and Developmental
Disabilities to provide technical assistance on statewide policy
and specifically institutional closure. OCL was not selected at
random. We knew a bit about OCL before we targeted the agency for
indepth assistance. Everything we knew about OCL was consistent
with what we have learned about the characteristics of innovative
agencies.
First, OCL is a small agency; it supports 30 people with
developmental disabilities and employs 40 staff. 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, OCL is characterized by strong and committed leadership.
When Pat Fratangelo took over the position as Executive Director of
the agency in 1990, OCL was a relatively traditional group home
provider. Pat brought to the agency not a commitment to any
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.
Even today, neither Pat nor anyone else associated with OCL talks
about closing all of the agency's group homes. But we predict that
the day will come--and sooner, rather than later--when OCL no
longer operates group homes, simply because the model is
inconsistent with the fundamental values that the leadership and
board of the agency have espoused. Of course, as this happens, it
will simply represent a new beginning, and not the end of the
story.
One of the characteristics of a good leader is to downplay
leadership and spread the credit around to staff, board members,
and others. OCL's leader shares this characteristic.
Finally, OCL has a board and planning committee that has been open
to change and to struggling with the uncertainties it brings. A
committed leader is necessary, but not sufficient for agency
change; more than a few committed leaders have had their efforts
thwarted by resistant boards and committees. 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.
Like many states, New York is in a process of fundamental
change. Many important changes have already occurred in policies
and funding mechanisms. Real change in people's lives will happen
one person and one agency at a time. From this perspective, OCL's
story needs to be told and listened to.