Running a Consumer-Responsive Project

By Judy Brewer
Project Coordinator
Massachusetts Assistive Technology Partnership

This article is reprinted from the A.T. Quarterly, Volume 2., No. 6 (1991).

The "Tech Act" was the first federal legislation to mandate the establishment of "consumer responsive" projects for individuals with disabilities. It gives states leeway in interpreting the meaning of both "consumer" and "responsive." The following piece shares some perspectives on how we are carrying out this mandate in the Massachusetts Assistive Technology Partnership.

Who are the "consumers"?

The term "consumer" can be awkward because in some contexts it carries a social service connotation, and some of us have fought hard to get away from the medical model. But this connotation is countered by its meaning in the popular press, as indicated in the name of the magazine Consumer Reports, where "consumer" represents a strong market force. The term "consumer" can be a convenient shorthand, referring to both "primary" and "secondary" consumers: primary consumers referring to individuals with disabilities, and secondary consumers referring to family members and partners of people with disabilities.

Within the Massachusetts Assistive Technology Partnership, we try to think as broadly as possible when considering who consumers are: to look for the participation of and address the needs of people with all disabilities, of all ages, of different racial and cultural backgrounds, different economic backgrounds, and in all regions in the state. For example, while much of the existing assistive technology equipment and services have been developed to meet the needs of the traditional "Rehab" populations, it is important to actively involve the perspectives of people with other disabilities who can also benefit from assistive technology. This includes people with psychiatric disabilities, people with environmental illness, the elderly, people who have mental retardation, people who are HIV positive - even though many of these populations don't identify themselves as having disabilities.

We also try to be aware of the stereotypes that sometimes act as barriers to inclusiveness: For example, Mr. Rodriguez has a "professional" job so he is no longer a "pure" consumer; Ms. Smith is "unsophisticated" and is unfamiliar with protocols for meetings; Ms. Lee is too angry, too apathetic, too connected with a particular advocacy group, etc. We believe we need all kinds of people, working together in partnership with providers, state agency personnel, rehabilitation engineers and others, to make systems change.

How can you make a project "consumer responsive"?

The danger of just thinking in terms of "responsiveness" is that it sounds as though you can go out, conduct your project activities, then come back and tell consumers in your state, "Well, it's done, tell me what you think." If you build consumer involvement and consumer direction into all levels of project operations, people with disabilities will have a major role in everything from agenda-setting onwards, and won't be relegated to a reactive stance. This means getting people with disabilities involved at the administrative and direct service staffing levels, and making sure that representation of people with disabilities on boards, councils, and work groups is in sufficient numbers so that consumers do not feel that they are "tokens" or feel muzzled by isolation on committees, but rather that they have a strong voice in directing the project.

Where can you find consumers?

The demographics of disability say that you should have an easy time finding consumers: an estimated 20 percent of all Americans have disabilities or chronic illnesses. Thinking in terms of "inclusiveness" also makes it easier to find people. We are constantly asking ourselves: Who can we find that will bring the perspective of going through the service delivery system with a head injury? Who do you know who is deaf and knows what the service gaps are in the Western part of the state? How can we find someone with a disability, from the Native American community, to help us strategize outreach to that community through the Public Awareness and Information Work Group?

We did an interesting exercise at the Coordinating Center for the Massachusetts Assistive Technology Partnership: we spent several hours examining the networks we each had with different consumer and provider constituencies, identifying where we could share contacts and resources, and where the gaps were in our networks. That has helped us be aware of the hidden biases that creep in when we're calling around for advice and participation, and reminds us to always look beyond our existing networks.

Once you know all the kinds of people you hope to get involved, many of the organizations you need to contact to find people will become self-evident. Go to Independent Living Centers, disability-specific associations, health, education or civic organizations in minority communities. Find out what the formal and informal communication networks are within each community, and use those networks to find interested people. Find cross-age representation by tapping into elderly groups such as AARP (American Association of Retired Persons) or the Gray Panthers. In addition to working with parents of children with disabilities, find some teenagers with disabilities who want to get involved, because they'll be able to articulate their needs in ways their parents cannot.

How can you ensure continued consumer involvement with your project?

If you would like additional information on this topic, on the Massachusetts Assistive Technology Partnership, or would like a sample of our accommodation checklist for large events, please contact: Judy Brewer, Project Coordinator, MATP Center, Gardner 529, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115. Voice 617-735-7820. TDD: 617-735-7301. FAX: 617-735-6345. Modem: 617-735-7225.

The A.T. Quarterly was a newsletter developed by the RESNA TA Project under a contract with the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education (ED). The content, however, does not necessarily reflect the position or policy of NIDRR/ED and no official endorsement of the material should be inferred.

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