Braille Monitor August/September 2004
(back) (next) (contents)
Partnerships in Rehabilitation: The Power of Combined Action
by Joanne Wilson
From the Editor: Sunday morning, July 4, Commissioner of the Rehabilitation Services Administration (RSA) Joanne Wilson addressed convention delegates. Her address was filled with useful information for those interested in working to improve rehabilitation for blind people. After an enthusiastic welcome from the audience, this is what she said:
An old carpenter was looking forward to retirement, but a few days before he was scheduled to leave, the head of the construction company came and asked him to stay on long enough to build one more house. The fellow grudgingly agreed. But he was in a hurry to be finished. As a result he used whatever materials came readily to hand, and he often did not do his best work. But he got the job done in record time and went to his boss with the keys to the house. His boss accepted the keys with a smile and then handed them back explaining that the house had been a gift from the company to him for all the faithful years of work he had put in. The carpenter said, “If only I had known it was for me, what different materials and craftsmanship I would have used.”
I tell this story to our rehabilitation professionals around the country. I tell them to imagine that their loved ones are going to become consumers of the services offered by the rehabilitation agency. What policies and practices would they like to have in place for their sons or daughters? What would the system look like if it was going to serve their loved ones?
This question is much more pressing for you because you either have lived or will live in our rehabilitation house. You, the organized blind, must help us build our rehabilitation house. You need to become carpenters who will construct a system that will truly serve blind people. For the past eighty-four years the organized blind have helped frame the rehabilitation law. You must continue to give of your knowledge and offer your craftsmanship to build our system.
Today I want to outline a blueprint showing how you can help in building our rehabilitation system. Our law lays the foundation for our house. Section 2 (b) of the Rehabilitation Act states that the purpose of rehabilitation is “to empower people with disabilities to maximize employment, economic self-sufficiency, independence, and inclusion and integration into society;” and also “To ensure that the federal government plays a leadership role in promoting the employment of individuals with disabilities, especially individuals with significant disabilities, and in assisting states and providers of services in fulfilling the aspirations of such individuals with disabilities for meaningful and gainful employment and independent living.” So what does the law say; what does our foundation establish? It says that we must have a system that empowers blind people, that changes people’s lives. How can we do this?
I recently heard about a cab driver who kept his cab immaculately clean. When he picked up customers, he leaped out of the car to hold the door for them and carefully seated them. Before starting the car, he called their attention to a neatly folded newspaper on the back seat for them to read if they liked. He offered them a selection of music during their drive. In short, he gave them a memorable trip. When asked why he went to such lengths, he replied that he had learned long before that, no matter how well you do the job people expect you to do, they will never consider that you have done more than a good job. But if you surpass their expectations, they will immediately recognize that you have done a great job. He concluded by saying that he liked the sound and the returns of being considered great far better than being thought average because he was just getting by.
You can help provide the materials and the techniques to help the rehabilitation system to become great, to exceed expectations. We need your help. We need thousands of you to network and work with us, to give us your knowledge and your expertise to supplement the work of the rehabilitation system. For years the voices of organizations of consumers have been ignored in our system because of fear, so-called professionalism, or simple failure to think. We have vastly underused our resources.
My boss, President Bush, has articulated his commitment around the country to community-based organizations, organizations like the National Federation of the Blind. He says that federal agencies need to work in close partnership with community-based organizations. The New Freedom Initiatives emphasize that we need to empower people with disabilities, raise expectations, and thereby raise opportunities.
Several months ago I gave to all our state agency directors a commissioner’s memorandum on how they could include consumer organizations in the rehabilitation process. Today I want to give you these same ideas so that you can be proactive in getting consumers involved in our rehabilitation system. The organized blind can give the experienced-based information, the technical assistance, the role modeling and mentoring, blindness training, job matching, advocacy for consumers and the agency, and many other services that can benefit our agencies. We need to merge vocational rehabilitation with consumer organizations like the National Federation of the Blind if our system is to be strong and is to succeed.
I want to talk to you about the first piece of this blueprint: mentoring and role modeling. As blind people we are likely to model ourselves on someone else. We learn about blindness from someone. Our experience as blind people influences the choices we make. Sometimes these choices are self-limiting. Consumers come to our system because they want the experts on disability to tell them that there is hope for their lives. Who better to give that kind of hope than consumer organizations of blind people? Let’s think specifically how you can get involved in your state agency in role modeling and mentoring.
First of all, mentoring services can be included in the plan for rehabilitation for consumers who come into our system. Requirements for such services can be written into the plan. You need to make sure that brochures about this organization are in every rehabilitation office, that the counselors in your state agency realize that they need to refer consumers to your organization so that they can experience good role modeling and mentoring. We have transition grants available through either your state or the federal government that give money to organizations like the National Federation of the Blind to help provide mentoring and role modeling. Making sure that the rehabilitation agency knows about the Federation’s scholarship program is a way of exposing young people to effective role modeling. The older blind programs are always saying that they need peer mentors to be involved with older blind consumers. You have materials that are extremely valuable to the rehabilitation of blind people: the Braille Monitor, the Kernel Books, the speeches and other literature--these are materials that need to be available to our rehabilitation system.
Mentoring occurs at conventions like this one, at the state and local levels, at chapter and division meetings, and at seminars and training centers. If the funding is written into the Individualized Plan for Employment (IPE), the vocational rehabilitation (VR) program can pay for a consumer to attend conventions and seminars. VR can help sponsor student seminars and parent seminars. Probably the greatest resource available to the rehabilitation system--the ultimate in mentoring--will be the new Jernigan Institute, where the programs generated are all by blind people for blind people. Whether it’s science camps for students or senior programs, conferences or courses, the building has been built, and now it is ready to do business. This business needs to be done in conjunction with the rehabilitation system. We need to recognize such valuable resources. Role modeling and mentoring are a necessary part of any successful rehabilitation.
The second part of our blueprint is adjustment to disability. These are comprehensive and intense services offered to consumers to help build positive attitudes, confidence, skills--the things necessary for true rehabilitation. Even the best rehabilitation counselors can go only so far in providing this adjustment to disability. Society tells a broken story about disability, a story of low expectations and what people can’t do. But the blind tell a different story about rehabilitation, a story of personhood and ability to work and live as equally contributing citizens with their sighted neighbors.
In the rehabilitation system the blind have an advantage in that we do offer residential training centers, where adjustment to disability can take place. Such training centers must work in conjunction with the organized blind. October 4 to 6 of this year RSA will sponsor the second conference dealing with residential training centers. It’s called “Challenges of Change: Strategies for Successful Outcomes in Residential Training Centers for the Blind.” We need you to participate as presenters and as active participants at this conference to help build up our adjustment-to-disability components in the rehabilitation system.
The third part of our blueprint deals with the development of the Individualized Plan for Employment. This is a planning tool used by rehabilitation counselors to identify the employment goals, the services, and the providers needed by a consumer who comes into our system. Our rehabilitation law says that any consumer can develop his or her own plan, work with a counselor to develop a plan, or bring in representatives of consumer organizations or other consumers to help develop the plan. Tell me, who would have a better perspective to help both the counselor and the consumer in developing a plan than people who have experienced blindness and who have successfully completed their own rehabilitation?
The fourth part of our blueprint deals with program evaluation. Who better to evaluate the rehabilitation system than those who bring to the job the collective thoughts and experience of blind people around this country? All successful businesses listen to what their consumers have to say. You have to begin thinking of yourselves as the mystery shoppers in our rehabilitation system. Go to the public forums held by state agencies when they are thinking about adopting new policies. Go to regular meetings. You need to participate in the statewide assessments that each state is required to conduct.
A tool that will help you in the evaluation of programs is understanding what we call our standards and indicators. These are measures of the numbers but, more important, of the quality of employment outcomes in our programs. Get familiar with these. The first standard has six indicators. Three of these are critically important: how many people were placed in competitive jobs, how many of these were people with significant disabilities, and what kind of wages did these people earn? A state agency can fail to meet some of the other indicators if it’s for the right reasons.
You need to know many things when evaluating a program. Here are a few things that inhibit an agency from doing the best job it can in working with consumers. Look at your agency’s performance appraisal system. Is it focused on the number of people who go through the system? Does your agency limit its budget so much that it does not allow high-cost pieces of equipment? Does your agency have either formal or informal processing standards, standards that go beyond the federal requirements in determining eligibility and in developing the Individualized Plan for Employment? Does your agency have formal or informal policies that limit the support given for educational programs and training? Does your agency have large caseloads for each counselor? Is there a lack of emphasis on post-employment services? Finally, is your agency’s main goal “first job, any job”? These are all issues you need to look at in evaluating your agency’s service delivery.
The fifth part of our blueprint has to do with policy development. This is central to the rehab process. Just last evening I was talking with a convention delegate here who is on his state rehabilitation council. He said, “Those meetings are so boring. All they do is talk about policies.”
After I stopped clutching my heart, I emphasized to him how important dealing with these policies is. You need to get at this in your state rehab councils, on your advisory committees, your commission boards. Get involved in dealing with the heart of the rehabilitation program: the older blind program, the Randolph-Sheppard program, handling homemakers, RSA monitoring of state agencies, generating ideas about reauthorization.
I want to pause here to give you some terms you need to understand if you are going to be effective in shaping the policies of your agency. The first term to understand is “Eligibility.” Ours is an eligibility program. Anyone with an impairment that constitutes a substantial impediment to employment and who can benefit from VR services in order to get employment is eligible for services. You may not know that the Rehabilitation Act amendments in 1998 included one that stipulates that anyone receiving SSI or SSDI is automatically eligible for VR services. It is really hard to prove that services should not be provided. You have to demonstrate clear and convincing evidence that the person is too severely disabled to benefit from VR services.
“Choice” is another word that you need to know. Due to the work of the organized blind, due to the work of this organization, choice is now a basic principle. Consumers must receive all the information necessary to make informed decisions about the various aspects of their rehabilitation. Choice is particularly important in determining employment outcomes, services, and providers of those services.
Another term you need to know about is “PD (Policy Directive) 97-04.” This is guidance promulgated by RSA about employment goals. It reinforces the concept that a consumer can select an employment goal based on individual interest and informed choice. This policy directive also clarifies the notion that VR services can be used to advance a person’s career, even if he or she is already employed or has had previous educational services.
Here is another term you should know about. It is “Regulation (that means it is part of the law) 361.50.” The RSA is monitoring states for compliance with this regulation this year. It prohibits agencies from developing policies that limit the nature and scope of services, that place financial caps on services, that restrict access to out-of-state services, and that limit the number and duration of services. Agencies can have such policies, but they cannot have them unless the policies provide for exceptions for individuals based on individual needs. Your job is to make sure that consumers know that they can ask for these exceptions. Then you need to make sure that these exceptions are uniformly and fairly implemented to all consumers.
The next term you need to be aware of is “Financial Participation.” RSA does not mandate that people participate financially in defraying the cost of their rehabilitation, but we do permit states to develop their own policies about financial participation. Remember, however, if people are on SSDI or SSI, they are not required to participate financially in their rehabilitation costs.
Those are all terms you need to know in order to participate effectively in shaping state agency policy. Now let’s return to the blueprint for building a sound rehabilitation program. You can provide immersion experiences. You know that the main problem that blind people face is negative attitudes and stereotyped views of blindness. These notions can exist in blind people themselves and the professionals in the field of rehabilitation. This is why immersion experiences for both consumers and rehab professionals are critical. Both groups must understand the blind culture and have positive attitudes about blindness. They must know about employment potential and understand about alternative techniques for getting things done. They also have to learn to be comfortable around blind people.
The immersion experiences I am speaking about can occur at conventions like this one, meetings, social events, and training programs that require their staffs to undergo intensive training with consumers. Louisiana Tech now has a graduate program for rehabilitation professionals that uses immersion experience, and this is available to people across the country. And of course one of the goals at the new Jernigan Institute is going to be training the trainers. People will have immersion experience as part of this training.
I recently went to a convention of the blind. I listened all day long to the presentations. I began grabbing brochures and napkins for making Braille notes about what I was hearing. As I go through this list of the things I heard, I want you to consider whether these items constituted rehabilitation. What impact would exposure to this experience have had on a new consumer listening to such information for the first time, or on a rehabilitation professional sitting in the audience?
People got up to talk about state agencies and the services provided--training and transition programs, library services, NFB-NEWSLINE®, Jobline. They talked about what was happening in the state legislature. Another woman got up and talked about her trip to Russia and how as a blind woman she taught English to teenagers. A man talked about how he did his job as a totally blind social worker. A group of students got together to talk about dating--blind and sighted, getting around, tips on how to behave. I heard people talking about how hard it was to be active in a consumer organization, but how much harder it was not to be. I heard statements like, “You must be willing to change and grow”; “You must learn to reject over-protection”; “You must come to say, `I do it all the time,’ and not `Well, I can do it sometimes’”; “Get in there and learn by doing it; we can’t let sighted people get in ahead of us.” I heard people saying, “I don’t have to feel alone anymore.”
I heard someone say, “It’s okay to look different.” I also heard someone say, “All of you were there with me in my head when I went to interview for my job”; “The first time I decided to go down to the cafeteria alone, you were there in my head.” I heard people say, “We all need to learn from other blind people, even if sometimes it’s a kick in the pants”; “We need to learn by teaching others”; “We need to give”; “We need to have pride in ourselves, and we need to care about other blind people.” Don’t you think that is rehabilitation? Our rehabilitation system needs to take advantage of that one day’s worth of knowledge.
The next part of our blueprint deals with in-service training. All state agencies do in-service training of their staffs. You need to be a part of that training. You need to help develop the training modules, the materials, and the newsletters.
At RSA headquarters, last week we had consumer organizations in to talk with our new state agency directors. We developed two training documents last year--one on empowerment and one on strategies for orientation and mobility. This year we are going to produce a new document in the rehabilitation world called the IRI (Institutes on Rehabilitation Issues), about how to involve consumer organizations in the rehabilitation system. We are now looking for people who would be interested in helping to write that document so that it can be used for years in the rehab world in training staff. We are also looking for consumers to help write articles for RSA’s publication, American Rehabilitation. We are looking for input from consumers in many of the projects that we are doing.
The next part of this blueprint has to do with communication and outreach. You are the best grapevine in the world. The blind grapevine stretching across this country passes along information about what services are out there, which ones are good, and which ones aren’t. You inform consumers about changes and trends in rehabilitation. You can go to state and national policy makers and let them know what you think about reauthorization, budget issues, and policy consolidation. You have ten times more publicity value than anybody else in the rehab system. You can use that visibility to broadcast the success or the problems in the system. Remember that you can always write to our regional offices or to RSA to ask questions or to tell us what you need to know about policy.
I also want to remind you about your opportunity to review grants at the state and national level. We need peer reviewers, people who will review grants for OSERS. Most of you are not going to pay any attention to what I am saying now. You will dismiss it saying, “She is going to ask me to send in my resumé; I’ll let somebody else do that.” But we need you to sign up to be a peer reviewer so that you can help determine who gets grants and what kind of projects get funded in the rehabilitation system. To be a peer reviewer you must email your resumé to <email@example.com>.
You can also apply for funding from rehabilitation services at both the state and national levels. A part of the rehabilitation law, 103(b), permits establishment grants. You can establish programs that will serve people in your state. You can also set yourself up as a vendor and be paid a fee-for-service from your state agency. These services can be things like the mentoring grants, working with older blind people, and so on. One other section, Section 12, provides for grants to the states from the central office of RSA to provide technical assistance to the state agencies. In order to improve their services, these agencies can work with consumer organizations to develop programs aimed at doing so.
The last part of our blueprint deals with how to get quality rehabilitation professionals into our system. You can help by influencing the hiring of rehab professionals; by working with the university training programs; by working with our rehabilitation continuing education programs (RCEPs), our training programs for rehabilitation professionals, (you can offer courses through them); and, most important, you can become a rehabilitation professional. I was very glad to see Louisiana Tech here at this convention. This is one of the programs in which you can earn a professional degree which will enable you to help change our system.
In conclusion I want to say that for the rehabilitation system to exceed expectations and to be really great, we need for the organized blind to become joint carpenters in helping us build our rehabilitation house.
(back) (next) (contents)