by Christopher Gray

Last month, I wrote about ACB's involvement in international affairs, and shared information about the many critical problems faced by the blind of other countries less fortunate than ours. In this article, I want to bring the focus back home to the United States and to issues of consumerism and the need for assistance we face right here at home.

The American Council of the Blind is truly the only consumer organization of the blind in the United States today. We do not accept federal funding that hampers our ability to act as true consumers. We speak from the point of view of participants in the process of education, rehabilitation and as recipients of services such as Social Security. As consumers of these programs, we have specific needs and direct responsibility for such services and for how well they serve us.

Take Social Security as one example. Many ACB members are consumers of one part or another of the Social Security program. For over 25 years, my personal role has been that of a contributor to this invaluable national service. Before that, I was an SSI beneficiary while a student. I have every expectation of participating in the future as a recipient of Social Security retirement benefits, based on my past contributions. Many of you reading this fall into one of these three categories, and many others receive Social Security Disability Insurance benefits based on your work and contribution history.

It is no secret that we in the blind community have been required to advocate for ourselves with the Social Security Administration (SSA) on a variety of topics for many years. Right now, the American Council of the Blind in conjunction with the Disability Rights Education and Defense Fund (DREDF) is investigating the taking of action to require SSA to provide information and correspondence in accessible media to blind and visually impaired Americans. With the technology and resources readily at our disposal today, there is no reason why SSA cannot provide letters to blind recipients in a form each recipient can read and respond to in accessible media. The right of access to your correspondence from a federal agency is basic, and is clearly guaranteed within the ADA and/or Section 504 of the Rehabilitation Act. We intend to make sure that the inability of SSA to react appropriately to this need is remedied. Once again, ACB not only talks about the rights blind people ought to have, it takes action to secure them. This proves again how much we are the consumer organization fighting for and protecting the rights of blind Americans.

In addition to being able to read our correspondence from SSA, it is necessary, and by no means always obvious, to know how to respond to such correspondence. Often, one must mount a defense against claims made by SSA regarding eligibility for benefits, or for the amount of benefits owed. One of the greatest needs within our community is advocacy assistance to support maintenance of SSI or SSDI to eligible recipients. The services and expertise provided by SSA to the blind community are severely lacking today, and determinations vary widely among district offices around the country.

A large number of blind people have no resource to which they can turn for adequate professional assistance when faced with an adverse finding or determination from the Social Security Administration. Here is where an issue arises of responsibility. How much responsibility does a consumer organization like ACB bear to assist recipients in such matters? Might we as an organization wish to play a greater role in the providing of such advocacy assistance?

Several years ago, many members of ACB throughout the country took advantage of a series of training seminars in order to assist themselves and others with asserting their rights under the Americans with Disabilities Act. We have no way of knowing how many participants became active advocates on behalf of themselves or of others, but we do know that many ACB members participated in the training seminars and found them very useful at the time.

In my visits with affiliates, issues related to Social Security come up in almost every one. Just last weekend, June 10-12, I visited our North Dakota affiliate and heard there from one more member who is struggling to stay under the SGA level for SSDI and who could benefit greatly from advice from other blind people on how this is done. Without proper assistance, it is easy to lose your entire benefit simply by exceeding the monthly SGA level, which can place you in a situation of having no SSA income and no medical insurance. If a person runs afoul of SSA rules and regulations, it can take years to sort out the situation, and too often, the blind recipient loses in the end when he/she has done nothing wrong but when the proper advocate cannot be found to assist. With a consumer corps of advocates, such an unfortunate situation could be more readily avoidable.

Finally, while I've used Social Security as the example in this article, equally significant problems exist within the Medicaid system and for clients of vocational rehabilitation. ACB could benefit greatly from the creation of a corps of specialists in any or all of these areas. Training, commitment and coordination are all key elements of starting such a program. I would like to solicit feedback from "Forum" readers and ACB members in the creating of such core groups. We will have this as our topic of conversation on the conference call on August 18. Please come and discuss these issues at (866) 633-8638. The ID for this conference call meeting is letstalk or 53878255. The call will begin promptly at 6:30 p.m. Pacific time (9:30 p.m. Eastern). I hope to visit with many of you on this call.

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