Frontline Initiative

On Common Ground:
Finding a Shared Voice Makes Us Strong


John Rose is chair of the AAMR Special Interest Group on DSPs, Irwin Siegal Insurance, Rockhill, New York

At the last annual American Association on Mental Retardation (AAMR) Conference in San Antonio in May of 1996, there was a multi-disciplinary session called On Common Ground: Working Together to Ensure Quality Outcomes. The speakers for this presentation included self-advocates, DSPs, and advocates of people with developmental disabilities. This was an important forum because the presenters shared a common goal of strengthening the relationships between the direct support professional and the people who receive the support for the betterment of both, a goal also supported by the National Alliance for Direct Support Professionals. The importance of strengthening the working relationships and partnerships between direct support professionals, self-advocates, other consumer groups, and families is illustrated by the following positions presented at the session.

By improving the quality of professional life for direct support professionals, we will significantly effect the lives of self-advocates. While many issues challenge direct support professionals’ roles, (salary, job stress, lack of a career ladder, unclear responsibilities, insufficient training and support), none may be more prevalent than the frustration a direct support professional experiences in not being able to become “personally involved” with the people they support. Workers are often told they can’t care, can’t be friendly and can’t cross personal and professional lines. In addition, their intimate knowledge of the person’s daily life is often down-played as unimportant compared to the knowledge of “professionals” (i.e., psychologists, QMRPs, etc.) who spend relatively little time with the person receiving supports. Outcomes occur through the power of the relationship between the direct support professional and the individual. Direct support professionals should be empowered to provide input on support plans, afforded the flexibility to meet the specific needs of those supported, and to structure their time to meet the needs of their lives and the lives of the people they support. These changes may likely require pervasive change. We must build systems that reward relationships and find common ground.

The working relationship between direct support professionals and consumers should be broadened. One presenter stated, “We all need to come to the table and talk.” This includes parents, professionals, self-advocates, and direct support professionals. We must also keep in mind that at the center of the working relationship is the person receiving services. Self-advocates want to be part of the “team,” particularly if they’re expected to support direct support professionals on their issues. The advantages of self-advocates’ support for direct support professionals issues include increasing the chance that a sufficient number of experienced, well-trained staff will be available; more support for the Alliance as it looks for ways to establish a career ladder for direct support professionals in hopes of reducing turnover; and increasing the likelihood of establishing support plans that are flexible, person-centered, and that allow direct support professionals the ability to carry them out.

As we move toward greater control and ownership of services by people with disabilities, it will become important to ensure a meaningful working relationship between direct support professionals and consumers of services. This working relationship and united voice will be imperative on the national scene to ensure that “managed care” doesn’t revert to less involvement by consumers and direct service staff . We will need more opportunities for self-advocates and direct support professionals to come together to discuss common issues.

Forums, like the one held at AAMR, in national organizations, and mutual support groups at the community level, and partnerships are important steps toward facilitating partnership opportunities. The National Alliance, co-chaired by a self-advocate, a direct support professional, and a researcher, is also an opportunity to move toward a common agenda with a common focus to improve the quality of life for both self-advocates and direct support professionals.

Perhaps the greatest challenge to the field of developmental disabilities today is not the scarcity of resources, but our own limit on looking for opportunities.