Person centered
planning, should we do it with everyone?
Michael W. Smull
Over
the past five years person centered planning has undergone a
transformation. It has gone from
something mysterious that only a few dedicated and skilled people did to
something where nearly everyone says "I have been doing person centered
planning for years". Person
centered planning and person centered services have become trendy. It has become a litmus test for being
politically correct. Any activity
where people are asked what they like or want is seen as person centered. Further, states, regions, and counties
are beginning to require (or to consider requiring) person centered planning
for everyone receiving services or entering services.
From
my travels (and from the materials that get sent to me) I have learned that
many of the alleged person centered plans and person centered services are not
person centered at all. Plans are
being written where what is important to those who provide services is written
as if it were important to the person receiving services, that abuse the
"voice" of the person (e.g. "I must be restrained"). People whose only real dream is to get
out of the institution they live in have plans that say that it is their dream
to live by themselves in a house in suburbia. People are asked questions where
they do not have the life experiences necessary to give an informed
answer. Questions are asked that
have the answer built in. Equally troubling are the honest plans that are not
implemented. Over and over again I
hear of people who tell us things such as desperately wanting a new roommates
who never get one. Much of what is
being done represents no real change in practice. It is business as usual masquerading as being person
centered.
A
person centered plan is a means and not an end. The life that the person wants is the outcome, not the plan
that describes it. Person centered planning is a process of learning how a
person wants to live and then describing what needs to be done to help the
person move toward that life. It is a description of where the person wants
their life to go and what needs to be done (and what needs to be maintained) to
get there. Good plans are rooted
in what is important to the person while taking into account all of the other
factors that impact on the person's life - the effects of the disability, the
views of those who care about (and know) the person, and the opportunities as
well as the limitations presented by the need for public funding.
A
person centered plan reflects a process:
That
is respectful of the person with the disability, the family, and those who
support the individual;
Where
the time and effort necessary is spent to be sure that the "voice" of
the
person
with the disability is heard, regardless of the severity and nature of the
disability; and
Where
there is a focus on learning what is important to the person in how he or she
wants to live, what is important to those who love the person, and any issues
of health and safety (from the perspective of the person).
The
resulting plan is a written description of what is important to the person, how
any issues of health or safety must be addressed, and what needs to happen to
support the person in their desired life. The plan cannot be separated from the
process. A compromised process
produces a compromised plan.
Beyond
these common elements there is considerable variation. Some of the better known formal
processes include: personal futures planning; PATH; essential lifestyle
planning; individual service design; 24 hour planning; and whole life planning.
Additionally there are a host of processes that have been developed
locally. These local processes are
often unnamed and usually are a blend of the better known processes. However, the label of the process is
not an indicator of the utility or integrity of the plan. When done well, what unites all of
these efforts is a commitment to learning what is important to people and a
commitment to implementing what was learned. They all require partnerships between: the person; those who
know the person; those who develop the plan; and those who implement the plan.
Where
careful planning and implementation have been done we have learned that:
When
we listen with skill and respect, we can learn what is important to each person
regardless of severity of disability;
Planning
is a continuous effort, what people want tomorrow is different from what they
want today;
Growth
and learning occur naturally when people have the opportunities that they want,
opportunities that make sense in the context of what is important to them:
Providing
structure inside those opportunities helps people with severe disabilities
access and learn more from those opportunities;
Most
of the behaviors that we have labeled as non-compliance, as challenging, or as
problem behaviors, go away when what is important to people is present;
Regardless
of severity of disability, people are able to take positive control over their
lives as we learn to listen and trust develops; and
Building
community, a network of self-sustaining reciprocal relationships, occurs but it
usually takes years not months.
We
have also learned that while what is most important to people is modest,
implementation is affordable only if we change the way we do business. Unless
we begin to fund people rather than capacity, individuals rather than houses,
we cannot afford to implement plans where people are asking to change who they
live with or what they do. We have
learned that it is our own structures that are the barriers and that many of
the reports of high costs reflect the rigidity of our responses.
Shifting
a system cannot be done by fiat and it cannot be done overnight. It requires
the development of capacity, changing the structures that define where the
system is going and what it should pay attention to, and it requires political
courage and political capital. Some of the ingredients needed to change the system
are:
Training
in person centered thinking for all of the people involved in planning and
implementation;
Requiring
that those who do the plans demonstrate competency in person centered planning
and that some of their plans be periodically reviewed;
Training
for that those who license and inspect and requiring that they be able to
determine that plans meet criteria and that the plans are being implemented;
Changing
the rules for services and requirements for funding so that they support person
centered planning and implementation;
Support
(training and technical assistance) for agencies that want to change their
practices and structures;
Helping
people with disabilities and their families build community before they are
desperate, while families have the energy and resources to form a partnership;
and
Leaders
who understand what real person centered planning is, the changes needed for
their implementation, and a willingness to build support while defending the
changes from those who feel threatened.
At
its core, developing and implementing person centered plans is about shifting
power and control. It is about
sharing control with the people supported and their families. To many people this is an opportunity
to be embraced but to others it represents a serious loss of power. Person centered planning should be done
with everyone only where there is the willingness to make the investments and
changes necessary. However, those
who lead must also sustain the change in the face of resistance and attacks. Those who wish to initiate the change
need to develop the strategies necessary to sustain the change. In learning what is important to people
we make an implicit promise to act on what we have learned. We should not make the promise unless
we believe we can keep it.
College
Park, Maryland
November,
1996
Michael
Smull can be reached at:
Support
Development Associates