History - Page 1 of 12
There is a change going on in the public rehabilitation system as service staff switch to something called "Person Centered Values". The way things were done in the past is now called the "Medical Model". In the medical model, rehabilitation staff treated people with disabilities like cases, not like people. They labeled people according to their disability (he's a quad, she's a blind diabetic, etc.), and delivered pre-packaged sets of services to people depending on their label. The medical model assumed that, for instance, everyone with epilepsy needed the same kinds of treatment and help, and everyone with depression needed the same kinds of help. Only doctors and specialists decided what those kinds of treatment and help would be. The person with the disability never got to say anything about it and sometimes felt like an object instead of a person.
It's as if, when you went to the grocery store, the store employees looked at your life and family (married, single, number of children) and brought you the groceries you would get. You would never walk down the shopping aisle or pick what you wanted. They would decide all that and bring you what you could buy - take it or leave it. Would you go to a store that treated you that way?
Under "person-centered values", the rehabilitation system works more like a typical grocery store. With the help of staff, a person with a disability can decide what he or she needs and then pick the service system to provide it. A person's plan of services should look like a shopping list. In the same way that by particular recipes and ways of eating guide a shopping list, a person's dreams and lifestyle should guide their plan of services.
Person centered values is based on a set of ideas about people with disabilities and how we should treat them. It starts with the idea that people with disabilities are people first, not variations on a disability diagnosis. Like everyone else, they have personal characteristics that will influence what help they want or don't want. These personal differences may determine the services they need more than their disability does. No one is a "depression" or an "epileptic". Instead, they are "Bill, who has depression - and can fix cars," or "Ruth, who has epilepsy, and can speak Spanish."
The person with the disability is the only one who really knows what effect their disability is having on their life. The person, not the doctor, is the best expert. A doctor only knows the "Census Bureau" version of what a disability might mean in someone's life. The only way to find out the real impact of, say, a traumatic brain injury or cerebral palsy on someone's life is to ask them. Doctors can only say "Many people with Traumatic Brain Injury have trouble concentrating", they cannot say "Eliza will have trouble concentrating" until someone actually asks Eliza if she is having trouble. People with disabilities know their disabilities from the inside out. Spend time with them, and they will tell you.
Try to think that someone with a disability is living differently from you, rather than living less than you. Their life is probably different from yours in ways that you wouldn't predict, but that does not mean that everything about it is limited or bad. If you read Juan's Story, for example, you will find that he sees his car accident as something that improved his life in many ways. The fact that he now uses a wheelchair is part of that life, but so is the fact that he can help other people more than ever before.
All of us have basic, universal needs - friends, control of our lives, a comfortable place to live, food, etc. Most of us also have some special needs that others may not share - a good stereo system to relax with, shelves for lots of books, herbal tea in the morning. People with disabilities also have different needs. If we start thinking of those needs as limitations, we are defining their lives as less full than ours. They just have different needs.
All people live in communities. If people with disabilities are put in specialized, segregated groups for more efficient service delivery, like sheltered workshops, they will form a community in those groups. But since those groups are based on everyone getting help from the system, the community will be limited and dependent. If people with disabilities can live in the wider community of their neighborhoods and towns, they can participate in the natural give and take of their town.
For most of us, if our way of getting around town - car, bicycle, etc. - breaks down, we know we can find someone to help - family, friends, next door neighbors. We will do the same for them. And if one of our neighbors is recovering from a broken leg, for example, we will ask how they are doing and if we can help. People with disabilities can give and receive those same supports in their community as well. If we help them fit into the diverse community of their neighborhoods, the kinds of support they give and receive will be more diverse. Drawing on the various resources of the community helps rehabilitation service providers offer a variety of supports to people with disabilities. Often, the best supports that staff can give are ones that help build community networks.
This is one of the most startling ideas in person centered values - every person, no matter how severe their disability is, can provide useful service in a job setting. Sheltered workshops often try to create simple tasks that give people with disabilities the illusion of working but actually provide a kind of glorified daycare. Person-centered values says everyone can go out in the community and do something. They may be watching over a store owners' parking lot to make sure only customers park there (a real problem near college campuses). Or they may be selling souvenirs at a local museum. Some people may need some training and "job coaching" to teach specific skills for a job, others may not. It depends on the person and the "essential functions" of a job. If you get to know someone, you will usually find simple accommodations that will allow him or her to hold a job.
One complication is that some people may not be ready to work. Some people are still sorting out their living arrangements and need to wait before they are "job ready." Other people simply do not want to work. They have found a life they like, with basic supports and friends and no job, and they do not want to change. If you find them a job, they will find a way to lose it - not show up, get sick, get fired, etc. They may tell you they want to work, but their actions say something else. It is sometimes hard to tell if someone needs a different, more suitable job or if they don't want a job at all. The best way find out is ask them.
Most of us get annoyed each year when we have to get a safety inspection on our car. It's our car, we feel, why can't the state let us be responsible for it's safety? We know if it is running or not. People with disabilities sometimes feel the same way. They do not want to be insulated from all risks. Most of us take chances and do unpredictable things - take up a new sport, explore a new part of town, etc. Sometimes it's a good idea and sometimes it's a bad idea. When it is a bad idea, we take responsibility for the results. Many of us have minor injuries and scars from the bad ideas.
Adults with disabilities should have the same freedoms. If a person who is blind wants to go swimming, let them try. If a person with quadriplegia wants to go swimming, let them try. If you think it is a bad idea, tell them, but let them decide. They know more than you do about what they can and cannot do. Experienced rehabilitation counselors have many stories of people who accomplished things no one thought they could do. People in wheelchairs because of cerebral palsy can drive cars. People with mental retardation can start rock bands. The best way to find out what works for someone is give it a try.
Most of us think of communication as talking or writing, but some people with disabilities communicate in different ways. Often, if someone who cannot speak easily is acting "disruptive" it turns out to be a way for that person to communicate "I don't like this!" If staff ignore the communication aspect and try to stop the behavior directly, the person will try to find another behavior to use, leading to more problems. They may "act up", they may get "sick" or deteriorate in their condition, or they may withdraw.
In these situations, the problem is NOT the person's disability or their behavior, the problem is the environment. They are in a situation that is a problem for them, but the environment doesn't give them a way to do anything about it. "Environment" can mean many things. It may be the kind of room or building where the person lives. It may be the way they are treated by the people around them. Whatever the problem, because they are human they will try to communicate about it. People who know an individual well will be able to understand their communication behavior.
If you look back over the list of core ideas, you will notice that all of them focus on seeing a person with a disability as a person first, not a thing or a label. Because they are people like everyone else, they should be allowed to live in a community like everyone else, have dreams like everyone else, find jobs like everyone else, take chances like everyone else, and be listened to like everyone else. They may look different from other people, or talk and move differently from other people, but down inside there is always a person.
On the other hand, the medical model assumes that everyone with one type of disability needs the same kinds of things. The medical model also assumes that experts on disabilities will know the most about what those needs are. This way of thinking can lead to systems that treat people with disabilities as "cases" or as children who can't make their own decisions.
The main idea of person-centered values is to avoid that kind of treatment. The best way to treat someone like a person instead of a thing is talk to them, spend time with them, and find out what they think about things. Experts are only used to give advice and information to the person.
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