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Disability activist/writer Laura Hershey says that more than focusing on new laws, we need to force the current SSA programs back on track.

Demanding a place at the table

by Laura Hershey

Laura Hershey is a disability activist and freelance writer. This article is taken from a longer column, "Pilgrimage to Washington," which can be found at her Crip Commentary website

In early October, I traveled to Washington D.C. to take part in several meetings about the complex relationships among disability, employment, and Social Security benefits.

A so-called "advocates' meeting," convened by Susan Daniels, Associate Commissioner of the Social Security Administration (SSA), was designed to serve SSA's agenda, and SSA staff had carefully outlined the meeting's purpose: to strategize about different scenarios for future advocacy efforts, depending on whether Congress passed or defeated S.1858, the Work Incentive Improvement Act. This bill (which died a week later) attempted to increase access to Medicare and/or Medicaid for people with disabilities who become employed. (To learn more about this, read some previous Crip Commentary columns.)

We 20 or so invited guests sat around a long table, eating boxed lunches and dutifully answering the questions put before us. I finally felt compelled to add some discord to this artificially positive conversation. I affirmed my support for S.1858. But I also said that on one level, it really didn't matter whether the bill passed or not. If it didn't pass, I said, we still have in effect some very powerful work incentive programs--especially the Plan to Achieve Self-Support, or PASS--which could be benefiting many more people than it now did. If S.1858 did pass, I added, the Social Security Administration would probably screw it up, just as it has screwed up the PASS program.

I gave some examples of some of SSA's recent actions--such as a decision by an administrative law judge in Colorado, ruling that because the claimant was disabled, no employment goal could be considered feasible for him! I pointed out that Susan Daniels' office was now in charge of the PASS program, but that we had seen no improvements in the program's administration as a result of her leadership. (Disability activists had expected more from Susan Daniels, whose back ground is in the independent living movement.)

Other advocates at the table joined in criticizing SSA's implementation of PASS. Bryon MacDonald, a strong and committed organizer from Berkeley, presented a detailed example of a practice that has become common at SSA--re-writing program guidelines unilaterally, without following the usual administrative procedures involved in developing regulatons. This is one way that SSA has effectively gutted the PASS program.

Bryon and I, and several others around the table, argued that our number-one priority should now be demanding accountability from SSA. The officials running SSA programs should be made to answer to our elected representatives. They should have to explain why they altered the PASS program in contradiction to the intent of the legislation that created it; why they have arbitrarily and prematurely terminated so many PASS plans, destroying people's dreams of pursuing careers; why they continue to allow SSA field workers to give inaccurate information or no information; and why they still tolerate staff who believe that people with disabilities cannot or should not work toward become employed.

If our leading advocacy organizations are serious about increasing job opportunities for people with disabilities, here's how they should focus their lobbying efforts in the next congressional session: Demand that Congress hold hearings on SSA's abuse of disabled Americans. I want to turn on C-SPAN one day next spring, and find SSA's top officials squirming nervously in front of a panel of irate Representatives. After weeks of intense grilling, I want a Congressional subcommittee to mandate some real changes, like requiring SSA to follow its own rules, and to stop making up new ones as they go along.

Then, once we've gotten current programs back on track, we could talk about creating new and better programs.


The next day several of us decided to have our own "advocates' meeting"--no SSA officials invited. About a dozen people gathered at a nearby office. Some had been at the SSA-sponsored meeting the day before; some hadn't even been invited. We talked for several hours. Many of us expressed anger and frustration at SSA's continuing resistance to all our reform efforts.

We were a pretty diverse group, and we disagreed on many things. But in the end, a large majority of us agreed that, one way or another, we need to build a national movement to demand political and program accountability from SSA.


President Clinton and politicians from both major parties have made saving Social Security a top priority. Discussions of this issue are already taking place, and more are planned, throughout the government, media, and academia. Topics include the solvency of the trust fund; use of the current budget surplus to shore up the fund; and proposals for investing and/or privatizing Social Security funds. Throughout all of these discussions, one affected group has been, up to now, almost completely excluded. That group, of course, is people with disabilities.

Any decisions emerging from these discussions will certainly have a significant impact on people with disabilities who received either Social Security Disability Income (SSDI) or Supplemental Security Income (SSI)--which is most of us. In fact, I would argue that the impact on our community will be disproportionately high; for whereas the average retiree depends on Social Security benefits for only fifteen years or so, many people with lifelong disabilities will need their benefits for decades. Therefore, we have more at stake. Any action which reduces available benefits will jeopardize the survival of millions of people with disabilities. Yet we are not being consulted!

We have a lot to contribute to this dialogue. People in our community have some outstanding ideas and insights that could help improve the benefits system--ideas about enabling more recipients to engage in some type of employment, to increase their own self-sufficiency and quality of life; and insights about why current "return-to-work" programs aren't working. Our solutions, if fully implemented, could save the trust fund billions of dollars over the next quarter-century or so. Yet we are not being consulted!

Whenever the president or anyone else convenes a discussion on the future of Social Security, people with disabilities should demand a prominent place at the table. We can't afford not to be participants in those crucial conversations.

© Copyright 1998 by Laura Hershey



Sweatshops, sheltered workshops?
What's the difference?

I spent an hour the Museum of American History learning about the horrors of sweatshops--factories where low-paid, unprotected workers crank out clothing and other products, under conditions of brutal exploitation. Sweatshops played an economically significant, but socially and humanly destructive, role in the industrial history of the United States.

I couldn't help thinking about the topic of the conference I was in Washington to attend--employment of people with disabilities. Millions of disabled people are languishing in unemployment. But hundreds of thousands of others spend their days laboring in sheltered workshops, where they are paid sub-minimum wage. Their behavior is strictly monitored, and they are not allowed to unionize. Like sweatshop employees, people in sheltered workshops have little hope of career advancement or of earning enough to buy a home. In both settings, discontented workers rarely speak out, because they fear retaliation.

I left the museum with questions haunting my thoughts: Is there any real difference between sweatshops and sheltered workshops? When will historians and economists probe the causes and effects of sheltered workshops? Will the exploitation of disabled workers ever be the subject of a major exhibit at the Smithsonian? Will sheltered workshops ever attract the kind of negative publicity and moral outrage finally being directed against sweatshops?

--Laura Hershey


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