The Future of Rehabilitation by Joanne Wilson

The Future of Rehabilitation by Joanne Wilson

The Braille Monitor

August/September, 2002

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The Future of Rehabilitation:

Partnerships with Consumer

Organizations

by Joanne Wilson

Commissioner, Rehabilitation

Services Administration

United States Department

of Education

Joanne

Wilson

From the Editor: For

many years Dr. Joanne Wilson was a loved and respected leader of the National

Federation of the Blind. Now that President Bush has named her to direct the

entire rehabilitation program in the United States, she returned to our convention

on Monday afternoon, July 8, representing the administration. This is what she

said:

The bamboo plant, the public

rehabilitation system, and the organized blind have much in common. If you plant

a bamboo seed, you will water and fertilize that spot, and you will wait four

years, and nothing will appear. Finally, in the fifth year, the plant will begin

to grow. It will grow as much as three feet in one day, and within one growing

season it will grow to a height of ninety feet. You will wonder what was happening

those first four years. Were they wasted time? No, what was happening was that

the bamboo plant was growing down into the ground. It was establishing a firm

root system that would anchor the plant when it began to grow to that great

height in the fifth year.

The tilling of the soil

of the public rehabilitation system began in 1916, '17, and '18 when World War

I veterans began coming back from the war, injured and in need of rehabilitation.

The seed of the rehabilitation program was planted in 1920 with the passage

of the Smith-Fess Act, which allowed civilians to be served by the rehabilitation

program.

For the first twenty years

of the rehabilitation program blind people weren't restricted from participating

in the services nor were services required. It was just presumed that blind

people were unemployable. As a matter of fact, from 1920 to 1938 only 4.5 blind

people per state were put to work, and these jobs were very traditional work:

chair-caning, basketry--things of that sort.

In 1936 came passage of

the Randolph-Sheppard Act, which allowed blind people to open facilities serving

food in our federal buildings. In 1938 came the Wagner-O'Day Act. This permitted

the federal government to buy certain items from sheltered workshops for the

blind. In 1943 the Borden-La Follete Act was passed. It expanded the emphasis

on employment, but it also allowed for separate agencies for the blind. These

agencies started out just buying things, providing low-vision aids and vision-restoration

surgery for blind people.

In 1950 Mary Switzer became

the second director of the rehabilitation program. As a matter of fact, the

building I work in is named after Mary Switzer; the desk that I sit at, people

claim, was her desk. Mary Switzer decided that maybe, just maybe, people with

significant disabilities might have some real rehabilitation potential. So,

to the list of those to receive rehabilitation, she added an emphasis on working

with the mentally retarded, the mentally ill, and the blind. In 1954 additions

to the Rehabilitation Act allowed for training programs to train professionals

in the field of blindness and other disabilities. More money was being devoted

to research on employment and disability issues. And, important to the blind,

state facilities were allowed, including residential centers serving the blind.

Mostly these followed the medical model, but at least services were available.

In 1967 the funding for

the rehabilitation program tripled. From 1968 to 1973 Mary Switzer became the

head of the Social and Rehabilitation Services Administration, which meant that

the programs now worked with lots of socially disadvantaged people as well as

people with disabilities. Her important contribution during this time was the

fact that she emphasized individualized services for folks with disabilities

and other socially disadvantaged people.

In 1973 we begin to see

the first little sprouts of our bamboo plant. It started to appear above the

ground. For the first time the program changed its emphasis from vocational

rehabilitation exclusively to rehabilitation of the whole person. It changed

its name because for the first time it started to emphasize and gather momentum

toward individual-centered services. There was less agency domination. It became

important not that minimal services be offered to folks with disabilities but

that they be provided the services that would assist them to achieve employment

and meet their potential. It was the first time that this sort of thing had

happened.

In future reauthorizations,

rehabilitation continued to sprout in these directions and grow taller and taller.

Through each reauthorization there was more consumer focus, consumer choice,

consumer empowerment, and a growing emphasis on civil rights. On Fred Schroeder's

watch as commissioner of rehabilitation RSA exerted more emphasis on high-quality,

meaningful employment in integrated settings. In other words, he started emphasizing

elevated expectations for folks with disabilities. The rehabilitation system

moved from being the primary cause of social change to being a respondent to

social change. A shift in leadership took place from rehab professionals to

the disability community. Things were starting to change.

These are some of the historic

facts about the growth of the rehabilitation system. But what really caused

some of these changes? What was the Miracle Gro that was making all this happen?

What made this system change from a minimal system that bought things for people

to become one that was responsive to people and really empowering people with

disabilities? One might point out that there were world events like wars and

increased leadership among the professions and politics. But we in the field

of blindness know the truth. Our organization was out there pushing in this

direction and being the Miracle Gro to make these things happen. It was not

always easy. There were pushing and struggling and often fights. But the blind

were organized, so these did happen.

The National Federation

of the Blind was organized in 1940. Lots of little things took place day to

day, brought about by lots of people. Lots of rather unspectacular events occurred

making the spectacular happen. Let's look at the evolutionary development of

the National Federation of the Blind. We might ask, do the phases of this change

coincide with what was happening in the rehabilitation system? No, when I analyzed

it, in reality they were pulling the rehabilitation system along.

The first phase of the

blindness movement dealt with getting food on the tables of blind people, getting

the welfare check, dealing with Social Security, trying to get people some money

so that they could survive. As I read the literature, I kept finding familiar

citations in the history; the names that very often reappeared were tenBroek,

the founder of the National Federation of the Blind, and Matson, Floyd Matson,

who is in this room today. Just look around the room.

The next phase of the blindness

movement was that of finding jobs for blind people. Our early leaders took on

reforming the civil service laws. Early in the history of the organized blind,

blind people were not allowed to work in state or federal employment. They could

not take the civil service test. Our leaders said, "This isn't right."

So the federal government agreed that blind people could take the civil service

test but said that they would all get the score of seventy. Regardless of what

score a blind person earned, everyone was given a seventy. Our leaders fought

to get the system we have today.

The other day I was talking

to Jim Omvig. He was sent by the organized blind to go work for the Social Security

Administration. His mission was to ensure that Social Security claims representatives

could be blind people. Jim is here today; look around the room.

In 1958 at the request

of the leadership of the National Federation of the Blind, Dr. Jernigan took

over one of the worst agencies for blind people in this country. Long before

it was popular, long before Mary Switzer emphasized individual-centered services,

Dr. Jernigan proved that with proper training, which meant teaching both skills

and philosophy about blindness, people could be successfully employed in high-quality

jobs and could live independent lives. I was Dr. Jernigan's student; Dr. Maurer

was Dr. Jernigan's student. Many people in this room could testify that the

individual-centered service model worked. Look around this room.

The next stage of the blindness

movement was that of fighting for civil rights. The National Accreditation Council

was an accrediting body that said it would say which agencies serving the blind

were good ones. The problem was that blind people thought that many of the agencies

NAC was accrediting were awful ones, that NAC's accreditation standards were

way too low and weren't taken seriously by anybody. Many people demonstrated

and had their voices heard on this issue. Look around this room.

In 1992 Congressman William

Jefferson of Louisiana was on a committee that introduced the first choice provisions

into the Rehabilitation Act. Why did Congressman Jefferson do this? Who asked

him to do it? Who was in the room when it happened? Look around this room.

Two years ago Fred Schroeder,

the commissioner of rehabilitation, wanted to have passed an extended employment

rule in our rehabilitation system which would say that no longer could sheltered

workshop placements be counted as successful employment outcomes in the rehabilitation

system--lots of controversy on this issue. But letters were written. Many blind

people and people with other disabilities said that they believed in this rule.

Who did that? Look around this room.

The next phase of the blindness

movement goes beyond civil rights. It is where we go to the heart of the blind

and to the heart of the professionals, where we come to see blind people as

truly equal. That is why I see the blindness movement pushing for better adjustment

and training programs for blind people. In the rehabilitation world we can work

to put on paper the hooks, the wording, the tools in the Rehabilitation Act

that will work toward more social and economic equality for people with disabilities.

But the rehabilitation system can't do it all. Who can do it? Look around this

room.

I am here today because

President George W. Bush listened to blind people, listened to your wishes about

whom you wanted as commissioner of rehabilitation. I have learned that, if an

organization is to change and be effective, the people it serves must be heard.

This is a principle of our democracy; it's a principle of the private business

world; it's a principle of this administration. I have learned a lot by looking

and listening and hearing what the blind have to say. Because of that I have

developed certain principles that I believe will work in the rehabilitation

system.

I believe that people with

disabilities, including those with the most significant disabilities, like the

blind, can work in competitive, high-quality employment in integrated settings

and live full, productive lives as people with disabilities. What does this

mean--what does this "competitive," "integrated jargon"

mean? It means that blind people can work at real jobs and get comparable wages

for those real jobs. This policy has been sanctioned by the Clinton administration,

by the Bush administration, and by most organizations dealing with disabilities

in this country. Two groups hide behind the shield of choice in opposing this

rule. One of these is the people who run the sheltered workshops, and the other

is a small group of blind people. What these folks say is that blind people

ought to have the choice to work in sheltered employment if they want to, to

choose sub-minimum wages, and to choose not to have advancement. I ask you,

who do you know that, when given the option of other opportunities out there,

would make this choice? Look around this room.

This may sound familiar

to you; I believe that the major barrier to people with disabilities in getting

employment and living full, productive lives is the misunderstanding and low

expectations of society, of disabled people themselves, and of the rehabilitation

system. You know, to some degree all of us have lowered expectations. My boss,

President George W. Bush, often says that we suffer from the "soft bigotry

of low expectations." My job in the rehabilitation system is to institutionalize

the practice of elevated expectations. If we in the rehabilitation system just

provide services, we move people from full dependency to a little less dependency.

But, if we really give them elevated expectations, people move to real independence.

Researchers frequently

come into my office, mostly asking for money. A group came in the other day

from Cornell University. They do research on what makes people with disabilities

go back to work. I said, "Okay, give me the bottom line. What's the answer?"

They said, "A big

factor is their perceived attitudes about their disability. We did a study about

blind people. We studied a whole group of them. We asked, `Is your blindness

going to be a barrier to your getting employment?' Two-thirds of the people

who answered that question said yes, they thought their blindness was going

to be a barrier to their employment. Only 20 percent of that group got jobs."

Then they looked at the remaining third of the population who had been asked

this question and who had answered no, they did not believe that their blindness

was going to be a problem in getting employment. That population had 80 percent

employment."

Then I asked, "So

what makes that third believe that their blindness isn't going to be a problem?"

They said, "A force

is at work in their lives that convinces them that it really isn't."

I want our rehabilitation

system to be that force. But I also know that we need help from you. Look around

this room.

My third principle for

rehabilitation is choice. I believe that people with disabilities have the right

to choose what the heck they want to do with their lives--what kind of training

they want, what kind of services they want, whom they want to provide that training.

You can't provide choice just by giving people a bunch of information. Choice

is made with perspective. The other day I was down in the exhibit room, and

I was with Cathy. She was going from booth to booth gathering information about

technology. She was listening to the people and picking up brochures. We got

finished, and I asked, "Cathy, which one are you going to choose?"

She answered, "Oh,

I don't know. I'm going to let Joe go get the equipment, and then I'll ask him

how he likes it." Later I was down in the lobby, and I saw people picking

up the list of restaurants. But I listened, and they were asking other people

which restaurants they had tried and what they thought of them. We don't make

choices from lists and piles of information. We make choices by getting some

perspective. How do we get that perspective? In the area of blindness, look

around this room.

My fourth principle of

rehabilitation is my conviction that the primary role of rehabilitation is to

empower individuals with the information, education, training, confidence, and

elevated expectations so that they can make their own choices. Counselors no

longer need to be gatekeepers with prescriptive thinking. We need counselors

who believe in people with disabilities, who dream with consumers, who take

risks, and who actually invest time and money in the folks they work with. How

is this going to happen? I have six members of my staff from RSA at this convention.

I believe that the answer is an immersion experience with experts on blindness

and disability. Look around this room.

My next principle: I believe

that rehabilitation works best with a framework of accountability, efficiency,

and less bureaucratic administration. Why? Because we're not just dealing with

numbers; we're dealing with real people and real lives. Look around this room.

Last principle: I believe

that rehabilitation works best in partnership, in partnership with our state

agencies, in partnership with other providers, but, most important, in partnership

with consumers and consumer organizations. Dr. Maurer has always said that,

if we want strong organizations of the blind, we must have strong rehabilitation

programs. And if we want strong rehabilitation programs, we must have strong

organizations of the blind. What does this really mean? It's pretty simple.

If you give people good training and good jobs and they don't have to fight

and scrap to get them, they go away as happy customers. They will then be there

to defend the rehabilitation program and to mobilize to spread the good news

about rehab. Look around this room.

I have two simple priorities

for the rehabilitation system. One is to mandate a recognition and respect for

consumer organizations. We need to recognize that there are experts, a resource

out there that has not been fully used in our rehabilitation system. Look around

this room.

My second priority is to

help the professionals who are now in the program or are training to work in

the rehabilitation system to develop a philosophy of high expectations and then

to give them the tools and the go-ahead to use those high expectations. Wouldn't

it be wonderful if, after a blind person came into one of our rehab offices

to talk to the rehab counselor, he or she got up from that meeting and said,

"Boy, am I ever glad I came in here today. Why? Because my counselor gave

me hope. He believed in me more than I believed in myself. He gave me control.

And you know what else? He referred me to some other blind people, and I found

out that I am not alone. Other people are out there, and if they can do it,

I can do it too. And you know what? I'm going to run out and shout it to the

world, let everybody know that this is a good program." Those are the goals

that I hope we can reach.

One last fact about bamboo.

The root system of bamboo not only grows deep, but it grows wide. The roots

will grow out from the original seed twenty or thirty feet. A gardener told

me once that from those roots new bamboo stocks grow. You can try to cut away

that original stock, but you can't get rid of the bamboo. It's all over the

place. The voice of the organized blind, like the bamboo roots, is here to stay

and to be the Miracle Gro for the public rehabilitation system. Look around

this room.

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