Centering Our Planning On People: Judith Snow

August 9, 2011 at 4:53 pm Leave a comment

Reposting this from: http://www.isja.org.uk/articles_10_PerCtrPlng.html in May 2001:

In the early ’80’s something surprising began to happen. People set about designing ways to create plans with individuals who have some sort of disability label. This new type of plan was focused on one person only — an almost extravagant idea.

People started to do workshops to teach such planning and share new techniques and insights. I attended just such an event in 1983. It took place over an entire week. We examined the activities that usually occupied us — as busy working adults — throughout a day, a week and a year. We experimented with planning a similarly full day, week and year with some people who were living in group homes. It was exciting to realize that people could break out of isolated, boring situations and, with the right supports, be active participants in the communities around them.

By the end of the 90’s the available selection of planning processes ranged from quick and easy to implement through to comprehensive and intricate techniques. Person Centred Planning had become a distinctive and rich approach to supporting people who are labeled disabled. Many, many stories accumulated showing how useful such planning is when friends, families and service providers aim to support a vulnerable person to participate as an ordinary citizen with other citizens in ordinary places.

The activities we call Person Centred Planning were inconceivable forty five years ago. Today’s widespread adoption of Person Centred Planning marks a deep shift in our culture. A welcome change is taking place in how we view people, diversity and ability.

The first aspect of this cultural shift is that there is a growing appreciation of the personhood of a person who has been labeled disabled. This has not always been the case. Throughout history — and too often today — people with mental, physical or emotional challenges were and are viewed as something other than human.

What do others see in you when they recognize that you are a person? They see many things, of course, but three things are fundamental. First, people see that you can play a significant role in the economy — the rich network of activities that gets things done in our communities. As economic participants people create and produce things, pass along information, buy and sell goods and services, form formal and informal work teams, hold down jobs, employ others and make demands on “the market”.

Secondly, when people see that you are a person they see that you are responsible. Responsible people set the course of their lives, make choices, carry out decisions, solve problems, ask questions, make judgments, seek out better information and resources, hone their skills, and reliably support other people’s participation.

Thirdly, a person builds and sustains relationships. People typically have a wide range of family, friend, casual, work, neighbourhood, close and distant relationships. Most people know hundreds of other people. Being in relationship is a core experience for human beings. We define our identities in terms of these connections. People expect people to enter into and sustain a wide variety of relationships.

If someone falls short in one or more of these areas of economic participation, responsibility and relationship then people could use this as evidence that they are not a person. People with disability labels typically are jobless and play few or no roles in the economy except to “consume” services. They rarely carry out responsible roles, and frequently are extensively supervised — by educational assistants, case managers, social workers and more. People who are labeled disabled also typically experience isolation. They nearly always know fewer people than their typical counterparts, and the relationships they do have are shaped to a large degree by the human service system. So instead of knowing and contributing to a broad range of people based on interest, neighbourhood, employment, family and history, labeled folk usually know and contribute to a smaller range of people largely drawn from people who are paid to be in their lives, family and other people who are labeled disabled.

Given this reality people with disability labels have often been considered non-human throughout history. Even today some “experts” actively promote the notion that the personhood of people who are labeled disabled should be “measured”, and, if they don’t meet the standard, these “non-persons” should be permanently isolated in institutions or even killed.It could be natural to assume that lack of economic participation, responsibility and relationship are the inevitable outcomes of having clear physical, cognitive or emotional limitations. It could make sense to believe that all this adds up to diminished or nonexistent personhood. Why not believe that disability is a tragedy that must be accepted and coped with and that these limiting circumstances deprive a person of their essential identity? The evidence points to this!

There is a cultural shift in play, however. This change in beliefs declares that difference is not a tragedy but rather something to be understood and celebrated. The cultural shift I am referring to is the growing awareness that all human beings are persons by virtue of being born. One benchmark of this new understanding was the proclamation of the United Nations Charter of Human Rights in 1949.

With this change in the way we value people has come an alteration in how we perceive limitations in people’s minds and bodies. More often today we recognize that people who are labeled disabled are people with the same rights and possibilities as anyone else.

Once the truth that everyone is a person is accepted it becomes possible to see that society has placed many barriers in the way of people with unusual differences. These barriers destroy relationship, prevent contribution, and diminish capacity. The isolation, non-participation and lack of responsibility that seem to be caused by disability are in fact the result of the lack of appropriate support.

What is appropriate support? Citizens everywhere require the same sorts of support in order to take their places in society — transportation, housing, stable minimum income, education, information, relationship nurturing, etc. Different people need these supports in different ways. People with unusual bodies, minds and emotions need the same supports delivered in different ways, too!

Person Centred Planning is playing a significant part in shifting negative ideas about people with differences that get labeled ‘disability’. Person Centred Planning is a set of powerful tools for discovering what roles a person can play and what contributions he or she can make. Person Centred Planning gives us a way to design and establish the citizenship supports a person needs so that places for them to play roles in the community can be revealed and sustained.Person Centred Planning has three great strengths. First every method of Person Centred Planning has a way for us to discover the unique strengths and gifts of the person at the center of the plan. Disability labels and environments often make it difficult to see a person’s current contributions and how these contributions might fit into the community. For example a fascination with cars might be viewed as a behaviour problem if someone is living in a group home on a busy street. The same interest in cars is a requirement for working at the auto body shop in the same neighbourhood. Planning with a person in a personal way gives us a way to find the context that will give them opportunities to be respected and responsible.

Secondly, Person Centred Planning reveals the value of planning. To plan is to believe that the future is not already given — not fixed by physical and cognitive limitations or other circumstances. We are becoming more willing to say that something new can come into being for someone, then go about finding the people and resources to make it so. We are discovering that planning alternative futures is better not just for the individuals themselves but also for the various communities that they may come to participate in.

One young man I know has no eyes and is very vulnerable in his health. Throughout his high school years he has had a close group of friends who go to theme parks with him, create weekly musical gatherings at his house and regularly challenge his school environment to make a bigger space for him in their bureaucracy. For some months now they have been giving presentations at local schools about all they have gained from their many shared activities as a close band of friends. Their story also has been featured in their local community newspaper. Many, many people have been moved and enlightened by these young folks — their words and antics, their caring for each other and their spirit.

The planning that people do with this young man in order to create and sustain his public life is ongoing and creative. The results are not only beneficial for him but bring great value to his high school peers and to all the people of his town.

Thirdly, with Person Centred Planning comes the recognition that our efforts must not be focused first and foremost on caregivers and providers — as important as these people are. We are learning to take direction from the individual made vulnerable by being physically or functionally different.

Formerly, and — all too frequently still — planning comes down to little more than resource allocation. For example a service agency near where I live inherited a small warehouse eighteen months ago. From that day to this the agency’s planning has focused on developing programs to carry out in this building. All the people served by this agency will be taking these programs whether the programs’ objectives make sense in their lives or not!

Person Centred Planning makes us realize that the individual themselves can state the direction of their own life. Rather than assign prearranged lives to individuals, or turn only to caregivers to make decisions, we now have the means to turn on everyone’s creative potential. For example, one young man dreamed of being a doctor. Rather than focusing on his lack of academic ability, the friends, family and service providers on his planning team carefully examined what it was about being a doctor that appealed to him. Now he has an important paying job at a hospital packing and distributing sterile surgical supplies. He is a respected member of his community.

Person Centred Planning gives us the flexibility to discover the right places for a person to be in and contribute to. It also opens up the invitation and opportunity for people to relate to the central person in ways that are more fulfilling and bring new resources, places and people into the picture.

For example, one middle-aged man is living in his own apartment. He loves music and riding around in his car. His friends and personal assistants discovered that there were many small businesses in his neighbourhood where cars are repaired. Each one requires the daily services of a courier who picks up car parts from warehouses and delivers them to the garage. This man now has an independent business of his own, delivering car parts on short notice, working just as much as he wants to, and enjoying riding around in his own car.

Before having the opportunity to have a personal approach to planning his life, this man was served in a group home and an adult day care center. He was isolated and expensive to serve. Now, for a little less money than traditional services require, he contributes to the community, and is a member of a housing cooperative and an informal ring of independent couriers and mechanics. His supporters are backed up by a large network of interested and under- standing neighbours and colleagues. Clearly he and his community are much further ahead.

Person Centred Planning is one aspect of an important cultural change. This change is one of recognizing the value of diversity in every aspect of life and relationship. This new perception focuses on the value of each individual and the importance of each person’s unique contribution to the broader economy and community. Person Centred Planning is not just a new fad in support service tools of the trade, Instead Person Centred Planning is part of a bigger desire to build a world that works for all its citizens.

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Entry filed under: Research, theory.

Optimal Individual Service Design Course Shared Living: It’s All about Relationships

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