[Nfbf-l] Informed Choice

[Lappland]

Informed Choice and the Empowerment Circle

by James H. Omvig

>From the Editor: Through the years Jim Omvig has written many articles for 
the Braille Monitor grounded in his years of experience in rehabilitation. 
They express common-sense notions about what works and what doesn't in 
rehabilitating blind people. He was born and raised in Iowa, where he became 
one of Dr. Jernigan's early students at the Adult Orientation and Training 
Center of the Iowa Commission for the Blind. He became an attorney and has 
done important work to help blind and disabled people across the country. 
Among other things he has directed adult training centers serving blind 
people in Iowa and Alaska. Today he is retired and lives in Arizona, where 
he is a leader of the NFB of Arizona. In the following article Jim explains 
what is and is not meant by the rehabilitation term "informed choice." This 
is what he says:

To choose or not to choose or, more accurately, what to choose? That is the 
question--the question for the new vocational rehabilitation (VR) customer. 
In recent years far too many blind customers of the VR system have been 
shortchanged because they have chosen unwisely; they have not known how or 
what to choose. It can be said that they have made uninformed choices. As a 
result, without ever even knowing it, they have sold themselves short.

Vocational rehabilitation for people with disabilities became a national 
effort in America in 1920, but this first program did not include the blind 
at all. Apparently people assumed the blind had no rehabilitation potential 
and thus could not become employable. The original law, the Smith-Fess Act, 
established the National Civilian Vocational Rehabilitation Act (P.L. 
66-236).

By 1943, as blinded veterans were coming home from the Second World War, the 
blind were finally included in VR programs and presumed to have at least 
some kind of employment potential. The 1943 law which brought the blind into 
VR programs was the Barden-LaFollette Act (P.L. 78-113). In the eighty years 
since VR was inaugurated in the United States, and in the fifty-seven years 
since the blind were included in VR programs, many new concepts have come 
along, and doubtless many have gone. Also it goes without saying that at 
times nothing short of mass confusion has been the order of the day.

However, no concept in the VR process has ever been more confused, 
misunderstood, twisted, and misused than that of informed choice. Since the 
concept has been so misconstrued and misapplied, large numbers of blind VR 
customers actually have been hurt rather than helped by what was intended to 
be a positive plan of grand design.

The concept of informed choice was first introduced to the United States 
Congress and to those involved in the field of work with the blind by the 
National Federation of the Blind in 1990. At that time a few orientation and 
adjustment centers around the country were consistently providing high 
quality, proper training--they knew the secret of full empowerment for the 
blind and taught it regularly. The fact was, however, that most training 
centers didn't have a clue about what proper training really is, let alone 
provide it.

The NFB thought that a blind customer--no matter where he or she happened to 
live--should have the right to choose to go at VR expense to an orientation 
and adjustment center which offered proper training and full empowerment, so 
the proposal went to Congress. No action was taken in 1990, but the seed was 
planted. The blind of the NFB worked hard, and by the time Congress passed 
the 1992 VR Amendments, the first choice provision was put into the Act (The 
Vocational Rehabilitation Act of 1973, as Amended). In the 1998 
Rehabilitation Act amendments the informed choice provision was strengthened 
and stated much more strongly.

The concept caught on, was used, and became confused. Then it began to be 
misused. Now the concept of consumer choice is as clear as mud. What then is 
informed choice? It simply means that the customer is to be treated with 
dignity and respect--as an equal partner--with the service provider. Unlike 
the old days when the VR counselor made decisions and then told the passive 
customer what to do, the customer now has the right to participate fully in 
the planning and decision-making.

In addition to selecting the employment objective and the broad range of 
needed services, the customer also generally has the right to choose the 
training program--pre-vocational or vocational--in which he or she would 
like to participate. The customer does not, however, have the right to tell 
a program how it should run its business. In other words, the customer 
cannot compel a VR vendor to change the nature of its services. If the 
customer does not like some aspect of a given training program, he or she 
should choose a program which offers what is wanted.

To clarify the point, let's look at a couple of simple analogies. I decided 
to become an attorney, so I chose to go to law school and to attend Loyola 
University of Chicago. The university, of course, chose what it would teach 
me and how it would do it. I could have chosen to go to some other law 
school, but each in turn would have chosen what and how to teach me and how 
I would be expected to dress, behave, and participate and what I would 
study.

Or, to illustrate absurdity by being absurd, try this one on for size: How 
would you react if your youngster were to come home from school some day and 
say, "Hey, Dad, we have this new thing in school. It's called `Choice.' I 
get to decide whether or not to take English or Spelling or History or Math 
or Science. It's really cool. Hey, Dad, I choose recess!"

Obviously there are certain presumptions in this world. Whether we are going 
to law school or grade school or high school or night school or an 
adjustment center for the blind, it is presumed that those who run the 
schools and training centers know more about what is needed and how to 
achieve the objective than those who attend the programs. If they don't, 
then the roles should be reversed, and the administrators had better become 
the students.

"So," you ask, "what in the world does all of this nonsense have to do with 
blind VR customers and informed choice?" Everything! In the confusion and 
frustration which now exist, customers attending training centers for the 
blind incorrectly believe that they have the right not only to make the 
choice to attend a particular program but also to make choices as to whether 
or not they will take all core classes, stay all day, use and carry white 
canes, take and use Braille, use sleepshades during training, etc. Worse 
still, most rehabilitation counselors, rehabilitation teachers, and 
training-center personnel have also bought into the erroneous notion that 
this is what the NFB proposed and Congress meant when it offered VR 
customers a choice. This, of course, is absurd.

There is an even more dubious aspect to this entire mess. The customers have 
obviously learned this mistaken view about choice from someone since they 
would have had no reason to have the slightest bit of knowledge about the 
subject. No doubt they never heard of the phrase, "informed choice," until 
they began working with their VR agencies. I believe that the customers have 
learned and are learning this erroneous view from the professionals in the 
field--the very rehab counselors, rehab teachers, and training-center 
personnel whose sole reason for being should be to help blind people adjust 
properly to their blindness.

Chaos has been the result. But, even more than that, when service and 
training personnel not only gave up their right but also failed in their 
responsibility to set the curriculum needed to provide proper training--to 
empower their customers--those customers have become the losers. They have 
been short-changed by the very programs which were created to provide 
meaningful help. Since such customers have had little or no adequate 
guidance, far too many have chosen unwisely and thus have failed to get the 
training they really needed.

To spell it out bluntly, the customer who is new to the blindness system has 
no foundation upon which to make an informed choice about anything dealing 
with proper training or adjustment to blindness. He or she has nothing by 
which to measure, no knowledge upon which to exercise judgment, no 
perspective. A person who has never been exposed to the blindness system 
wouldn't even understand the terminology.

Just consider: The new student or customer doesn't know about the wide range 
of possibilities which exist for the blind who have had meaningful training. 
That customer doesn't know a properly trained blind person can live a 
normal, happy, productive life. He or she must be taught and often persuaded 
by someone who does know. The new customer doesn't know, for example, why it 
is critically important in the adjustment-to-blindness process to learn to 
use the word "blind," rather than actively to continue to engage in denial. 
He or she must be persuaded by someone who truly knows and understands the 
importance of the customer's acceptance of and adjustment to blindness.

Similarly, the newly blinded adult doesn't know that prevocational training 
in a residential orientation and adjustment center is always preferable (if 
it is available) to training in a daytime-only program. This new customer 
does not know why it is important to use the long white cane rather than a 
short one; why sleepshades are necessary for the partially blind person 
during training; or why Braille and other alternative techniques are so 
important. Someone who really knows and cares must guide the blind person to 
recognize the truth of these and a myriad of other facts.

All of the foregoing is simply the way that it is in the real world, and no 
amount of hoping or wishing that it isn't so can change it. To complicate 
the issue even further, all of this persuasion and teaching must usually be 
accomplished in spite of the fear and stubborn reluctance of the blind 
customer involved. For the simple truth is that, because of the prevailing 
negative attitudes about blindness, the typical new adult VR customer 
believes that he or she can really do nothing of significance as a blind 
person and that, therefore, the offered state services are totally useless 
and irrelevant if not impossible to achieve. He or she will have been taught 
since infancy that blindness means inferiority, and this attitude will 
usually not change until the quality service provider intervenes and helps 
to change it.

Dr. Fredric K. Schroeder, Commissioner of the federal Rehabilitation 
Services Administration, told a marvelous story about choice at a training 
seminar for Arizona rehabilitation professionals. "When I went to work in 
Washington," he said, "I was asked by a personnel official if I would like 
to choose a federal health insurance plan. I said that I would like that. 
The personnel specialist and I went into a room and began picking up packets 
of information about my various options."

Commissioner Schroeder continued, "We took a large stack of books and 
pamphlets back to my office, and I began to sort them. Then I said, `This is 
ridiculous. I'm not going to read all of this stuff!'

"I went to a colleague--an employee who had worked for RSA for several 
years--and asked him if he had federal health insurance. He said that he 
did, and he told me which policy he had. I asked him if he liked it, and he 
said, `I do like it,' so I said, 'Me too,' and I signed up for what he had.

"I then asked my secretary to take a copy of each piece of paper having to 
do with all of the federal health plans and to weigh the whole stack. She 
did. It weighed thirteen pounds. This was great. I had thirteen pounds of 
choice about my health-care plan. Of course, until I asked for information 
from a trusted colleague, I had no rational basis whatsoever for making a 
sound decision."

This story should make the point. As with RSA Commissioner Schroeder, the 
customer who is new to the blindness system has no rational basis whatever 
for choosing the right adjustment program to attend. The employees of the 
quality service provider--those with the empowerment motive--must teach and 
lead and demonstrate and persuade in order to help elevate the new VR 
customer's expectations and to sell him or her on the proper training which 
can reasonably be expected to result in empowerment.

Two questions arise on the topic of how best honestly to equip the customer 
to make an informed choice--the kind of choice which will lead to true 
empowerment for the blind. First, what is the real role in the real world of 
the professional as it relates to informed choice and the correct adjustment 
center to attend? Should that professional remain neutral and, like a robot, 
simply hand the customer thirteen pounds of paper, or should the 
professional learn what it takes to empower a blind person and then do his 
or her very best to influence positively the choice the customer makes?

At the Arizona rehabilitation seminar referred to above, RSA Commissioner 
Schroeder answered this question directly and unequivocally. "A 
rehabilitation professional," he said, "absolutely has an appropriate role 
to play in the choice process by giving the very best information he or she 
can possibly provide. . . . The professional ought not to remain silent on 
the issue of the type of services which will empower the customer. . . . The 
professional ought truly to help the individual to make an informed choice. 
. . . Informed choice does not mean that a professional must simply sit 
passively when a customer comes in and says, `This is what I want,' and 
think, `That's a terrible idea, but under choice I'm not allowed to say 
anything. . . .' That is nonsense. That is not at all what choice is about. 
That type of behavior will simply get you about thirteen pounds of 
meaningless paper."

The second question has to do with the role, if any, which the organized 
blind movement should rightfully play in the process of choice. Should the 
NFB have any role? Yes. In addition to doing his or her very best to direct 
the new customer toward training which will lead to empowerment, the 
blindness professional who understands and is truly committed to full 
empowerment will also routinely refer that new customer to the local chapter 
of the National Federation of the Blind. The new customer needs successful 
blind role models, and he or she also needs a support group. Further, that 
new customer needs the inspiration and encouragement which flow naturally 
from being a part of the collective community of successful blind people.

Let me be very clear about the point I am making here. Some VR agencies 
bring in a speaker every month or two to talk to new customers for a half 
hour or so about his or her organization of the blind. This is not what I am 
talking about.

The entire point of this article is that we have come to the place in 
history where the seventy-percent unemployment rate among the blind is 
absolutely unacceptable. If we are interested in successful outcomes, we 
must deal with the world as it is, not with fiction. We must recognize and 
accept the reality that the mere fact that a person has become blind did not 
bring with it great insight into blindness. Therefore choice in a vacuum is 
pointless. The very best way for that new customer to have a real chance to 
exercise choice meaningfully is to associate with people who have themselves 
been through the process and who can therefore give perspective and 
meaningful opinions, informed opinions.

The views of these veteran VR customers will be based upon the 
experiences--both the good and the bad--which they and their friends have 
had. The new customer can then judge for him- or herself whether those 
experiences are relevant--whether those experiences relate or at least 
partially relate to the goals and ambitions he or she has.

A friend here in Tucson tells a great story on this point. He became blind 
overnight in Illinois, and he needed help since he knew nothing about 
blindness. He quickly applied for VR services, and within two days a VR 
counselor (a blind person) came to my friend's home to see him.

Among other things the counselor said, "It is critical that you meet and 
associate yourself with other blind people. Here is information about both 
the American Council of the Blind and the National Federation of the Blind. 
Check them out, and join something so you can learn from other blind 
people."

My friend ultimately visited and then joined the NFB. He says that, while VR 
gave him some home teaching and other services, it was through the NFB that 
his road to empowerment began in earnest.

To close the loop on what I'll call the empowerment circle, the next step is 
for that new customer to become actively involved in the NFB. His or her 
personal empowerment will truly be completed by getting involved and helping 
to make life better for all blind people. Soon this new individual will be 
the veteran inspiring and encouraging and giving hope to yet another, newer 
member. This new role for the customer will, in and of itself, be 
empowering, since one can gain much by giving back. The unbiased 
rehabilitation professional with no axes to grind will encourage such 
activity.

The Director of the Louisiana Center for the Blind, Joanne Wilson, reports 
dramatic VR outcomes when the empowerment loop has been closed through 
active participation in the NFB. An informal study (a formal one will be 
conducted later) reveals that 97 percent of her students are successful when 
they become actively involved in the NFB after completing training.

The secret of how best to empower the blind has long been known. The truth 
about blindness is known, the techniques for instilling that truth in the 
new customer are known, and the question of how to deal appropriately with 
the negative public attitudes about blindness is known. All of this has been 
tried, tested, and proven over and over again. What remains is for large 
numbers of professionals in the field of work with the blind who operate 
from the empowerment motive to learn about and become committed to full 
empowerment for their blind customers. Only then will they be able to pass 
on accurate information so that rank-and-file customers can make truly 
informed choices about their lives.

Those who have mistakenly believed that the concept of informed choice gives 
the customer the right to pick and choose only certain parts of a particular 
program obviously focus only upon the word "choice." As we have seen in this 
article, however, the word, "informed," is of at least equal significance. A 
choice without information and perspective--an uninformed choice--is utterly 
meaningless. Even worse, it may be devastating to the success and well-being 
of the customer.