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.