Interview with Tia Nelis, Self-Advocate

By Bonnie Shoultz
Associate Director
National Resource Center on Supported Living and Choice
The Center on Human Policy
Syracuse University

The Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD), located in the Department of Disability and Human Development, University of Illinois at Chicago, is a national resource in the field of aging and developmental disabilities. "The RRTCADD's mission is to promote the independence, productivity, community inclusion, full citizenship and self-determination of older adults with mental retardation through a coordinated program of research, training, technical assistance and dissemination activities. The main goal of the RRTCADD is to translate knowledge gained from research into practice through broad-based training, technical assistance, and dissemination to persons with mental retardation, their families, service providers, administrators and policy makers, advocacy groups, and the general community." (Source: http://www.uic.edu/orgs/rrtcamr/aboutus.htm)

Tia Nelis has been the Self-Advocacy Specialist at the RRTCADD since 1992. The author has known Nelis for 13 years, primarily through Nelis' unpaid service with Self Advocates Becoming Empowered (SABE), the national self-advocacy organization. Nelis was Co-Chair of SABE from 1992 to 1996, and was Chairperson of SABE from 1996-2000. She is the Founder and President of People First of Illinois. This article is based on an interview with her in late July 2003.

The RRTCADD has a track record of involving people with developmental and intellectual disabilities in its research and dissemination, and of making some of its materials and curricula accessible to people with these disabilities. Asked about the way the RRTCADD operates, Nelis said, "If it's going to be disseminated to people with developmental disabilities, we talk about it with people with developmental disabilities first. We have an Advisory Board that has self-advocates and parents on it. This Board gives advice on what kinds of research should be done, it looks at the materials RRTCADD produces… and the Board members may also be part of some of the projects."

Nelis gave two examples. "We have a project on Futures Planning. The Advisory Board members went through the training they developed, and now some are paid to be co-trainers. Also, we have a project on leadership that's been going on for several years. In this project we adapted Stephen R. Covey's (1990) training on The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change so that it could be given to people with developmental disabilities. The Advisory Board took the training as we were developing it, and gave us advice about the materials we were using."

"Focus on Leadership started with three years of research. I and some other people with developmental disabilities did parts of the research (Powers, et al., 2002). Then we had a focus group about what we had learned. The focus group talked about whether we should develop a new leadership training curriculum or adapt something that is used by people without disabilities. They helped us decide to explore the idea of adapting the curriculum based on Covey's "Seven Habits" materials," Nelis explained. "Essie Pederson and I adapted that, after spending a long time persuading the Covey people to buy into the idea. We had to become trainers in their regular 7 Habits curriculum before we were approved to develop or train with the adapted curriculum. Now she and I do that training, with the adapted curriculum, around the country. The great thing is that people with developmental disabilities get all of the information but in a way that they can understand and use it."

She gave another example, about a presentation she and Richard Hemp, then of the University of Illinois at Chicago, made in the mid-90s to the board of SABE. They were presenting the research data on institutions and community services that had been collected by the University of Illinois at Chicago. She and Hemp worked together to make it understandable. "We used graphs that had colors, with bars rather than pie charts, because people with developmental disabilities often have a hard time understanding percentages when they are in a pie chart," Nelis said. "I worked on the language that would be used to describe a slide or a study, and I did a section on why people should care about this information, why it's important, and what it means. To show that researchers and self-advocates can work together and present together, we did the presentation together. We also made the presentation available to self-advocates from any state. We told them that they could call Rick and he'd send the data for their state."

Her colleagues consult Nelis when materials are being developed for people with developmental and intellectual disabilities. She said, "The RRTCADD will often take research findings and develop a curriculum to help people with developmental disabilities make use of those findings. I know so many people with developmental disabilities that I have a good feel for what will be difficult for people to understand. Things like big words and uncommon words, for instance. Sometimes I'll ask people who haven't had much experience in the world and haven't been exposed much to ideas whether they know what a word means."

Nelis gave other examples of how she has worked to make materials accessible. One was especially interesting, in that it applies to boards of directors who are interested in including people with developmental and intellectual disabilities. "When I was President of People First of Illinois, I was on the DD Council. The materials they used at meetings were very hard to understand, and it was confusing for me. The Council approached People First to tear them apart, so I worked with a friend to develop some recommendations about how to improve what they were doing. We had a retreat with the Council, and my friend and I presented about how to make things accessible.

"First, the agenda used Roman numerals, which we didn't understand. For example, it would say I. Call to Order; II. Minutes; III. Old Business. We recommended that they change to numbers or letters. Next, all the papers we'd get were white. There was a lot of stuff to read, and it didn't tell us what to do with each section. We couldn't tell what was important and would require us to vote, and what was just for reading. We recommended that they color-code the sections, using the same color each month for each of the sections. So, for example, the minutes would always be one color, and the financial report would be another color. That way, even if someone couldn't read, they could have the right papers in front of them during the meeting."

"We recommended that they add graphics next to the paragraphs in a section, so that a person who does not read could understand what was coming next. For example, they might use a graphic of a gavel for call the meeting to order or dollar signs for the financial report. We also recommended that they add a cover sheet with the graphic used for each section and an instruction about what to do with the section, like read and be ready to discuss, you will need to read this, or you will need to vote on this.

Several years ago the RRTCADD produced a booklet about research for people with developmental disabilities (Heller et al., 1995). Nelis worked on this booklet with Tamar Heller (the RRTCADD Director) and Alison Miller.

"The booklet talked about how people could understand why and when they should be involved in research projects. At that time lots of self-advocates were not interested in being involved in it because they thought it was all numbers," Nelis said. "The purpose of the booklet was to show that research can be good if it's done in the right way. We also wanted to show why it is important that research can help you, and that you or your self-advocacy group can use it."

As part of the team, Nelis says, "they asked me to look at everything they wrote, and I helped them write it." An article written about the research leading to this booklet's development was published in Mental Retardation (Heller et al., 1996).

The RRTCADD Web site contains a page that describes its research specifically for people with developmental disabilities. The RRTCADD's research and training projects are described in plain language, using brief summaries in sections such as:

• What This Project is About,
• Project Goals,
• What We Are Doing,
• How We Did It,
• What We Found,
• What We Learned So Far; and
• How You Can Help.

The page is located at:
http://www.uic.edu/orgs/rrtcamr/advocatesummaries.htm

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REFERENCES

More about Tia Nelis: http://www.uic.edu/orgs/rrtcamr/moreaboutus.htm#selfadvocacyspecialist

Covey, S. R. (1990). The Seven Habits of Highly Effective People. New York: Simon & Schuster.

Heller, T., Miller, A., Nelis, T., & Pederson, D. (1995). Getting involved in research and training projects: A guide for persons with disabilities. Chicago: Rehabilitation Research and Training Center on Aging with Mental Retardation, Institute on Disability and Human Development, University of Illinois at Chicago.

Heller, T., Pederson, E., & Miller, A. (1996). "Guidelines from the consumer: Improving consumer involvement in research and training for persons with mental retardation." Mental Retardation, 34(3), 141-148.

Powers, L.E., Ward, N., Ferris, L., Nelis, T., Ward, M., Wieck, C., & Heller, T. (2002). "Leadership by people with disabilities in self-determination systems change". Journal of Disability Policy Studies, 13(2), 125-133.

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