A Place at the Policy Table

Leanna Skarnulis
June 15, 2003
Melonie Caster and her son, Trae
Melonie Caster and her son, Trae

Laura Buckner recently collaborated with the principal and cross-country coach of her son's junior high school in Longview, Texas, to present a workshop at a conference called "Inclusion Works." David, aged 13, has both cognitive and physical disabilities due to tuberous sclerosis, which causes brain and skin tumors. "When the coach first met David, she had never dealt with disability and adamantly refused to coach him," Buckner says. "She had a number of fears. For one thing, we were upfront in telling her he'd always be at risk for seizures, although he hasn't had one since he was four."

Buckner and the principal believed cross-country running would be good for David. Ultimately the coach relented, and she was among the first to recognize a month or so later how the sport boosted David's confidence. He went on to earn an eighth-place medal in a district meet. "In the workshop, the coach talked about David's impact on her, how he made her redefine what an athlete is and her role as a coach," Buckner says. "I was blown away."

Partners in Policymaking: A National Model
Buckner knows better than most how to break down barriers and build bridges so that David gets the social and educational support he needs. In 1996 she completed Partners in Policymaking training and in 1998 became program coordinator for the Partners' program in Texas.

Partners was founded in Minnesota in 1987 to provide leadership training for parents of young children with developmental disabilities and for adults with developmental disabilities who become self-advocates. The model has been adopted in a number of states, though some programs are no longer running. Participants learn about programs and practices in the field of disability from national experts, and hone strategies for communicating effectively with lawmakers, educators, and others.

About 36 people are accepted annually by the Texas program. They're required to attend eight monthly training sessions, which run from noon Friday to 3:30 p.m. Saturday. The following topics are covered:

  • H istory of disability and the disability rights movement
  • Inclusive education and communicating effectively in meetings
  • Supported living, person-centered planning, family support and supported employment
  • Assistive technology, seating and positioning, positive behavior supports
  • Federal policy and legislative process
  • State legislative process and current issues
  • State policy/service system and parliamentary procedure
  • Community organization

Two sessions are held in Austin, the state capital, and the remainder in Houston. Partners work on assignments between sessions and complete a major project after graduation, such as serving an internship with a public official, organizing town meetings or coordinating a parent network.

The free program is sponsored by the Texas Council for Developmental Disabilities primarily with $385,000 in federal funds from the U. S. Department of Health and Human Services Administration on Developmental Disabilities.

Many governmental and educational policymaking organizations recruit Partners' graduates for board membership or paid staff positions. "People get into Partners to help their own kids," Buckner says. "But they graduate with a global view of the disability community and feel responsible for using the gift they've been given."

Lobbying and Other Lessons
Learning how to work with state legislators is a powerful component of Partners' training. After being coached by legislative insiders, participants prepare and present testimony to about 10 legislators and staffers in the capitol's senate chamber. One parent who learned his way around the state capitol is Steven Dunnavant of Kilgore, Texas, a 1998 Partners' graduate.

When Dunnavent had his training, he was already involved in special education issues as the parent of sons Blake, 13, and Trent, 8, both of whom have mild cognitive impairment due to Fragile X Syndrome, a genetic disorder affecting boys. "Our special ed program is inclusive, and the majority of time they're doing what other kids do," he says. "Partners taught me to be more assertive and how best to help the school district provide what we need. I help them. It's important to say it that way. Too often it's the parent against the school district."

Dunnavant says before Partners, he'd never dreamed of lobbying. "As far as I knew you had to have a license." During the 1999 legislative session he lobbied on behalf of Texas Advocates Supporting Kids With Disabilities, and now he presents a session called "The Average Guy Can Lobby the Capitol" to Partners' classes. His influence has also been felt on the boards of the ARC (Association for Retarded Citizens) of Texas and the ARC of Gregg County, and he serves on the Continuing Advisory Committee for Special Education, which acts as a sounding board for the Texas Education Association.

Self-Advocates Strengthen the Partnership
Dunnavant has found that working with an adult self-advocate has expanded his own understanding of what it is like to live with a developmental disability. Dunnavent remembers sharing a room with self-advocate Andy Noser during a lobbying trip. "One night we stayed up for a couple of hours talking, lying in our own beds with the lights off. I asked him what it was like to have a disability, when he understood what was wrong, when he realized he wasn't in a mainstream classroom. I forgot he looked any different than I did, and I discovered he and I were a lot alike. I've never been moved like that."

Dunnavant and Noser became good friends. Both serve on the Partners' Advisory Committee. Noser, who lives in Pearland, says that while attending a meeting in Austin earlier this year, he and Dunnavant went together to the state capitol to talk to representatives about the funding for the Texas Department of Mental Health and Mental Retardation.

"Partners is a very good program, and more people should be given the opportunity to go," he says. "I think the best things about my Partners' training were making new friends and learning things, like the importance of making sure kids get a good education and how to stand up for myself at work and in my personal life."

An Angry Mother's Conversion
Melonie Caster struggled to find her place in the 2001-02 Partners' class. She came close to walking out of a session on inclusion—the practice of including all children in mainstream classrooms—after interrupting the presenter and telling him he was crazy. She was convinced that no one could understand the special needs of her 8-year-old son, Trae, whose disability was the result of shaken baby syndrome.

"I was known as the angry mother," she says. "Out of 30 people in the class, I was different. Their children had cerebral palsy or Down syndrome or autism, and I was there because my child had been abused. They were having problems coping with disability, but my problem was dealing with the injustice. The woman who did this to Trae was a licensed daycare provider. She was never held accountable and still keeps children."

Caster felt threatened by inclusion. "I was afraid to ever leave him where there's only one adult or where children might be mean to him," she says. "Laura Buckner talked to me about inclusion and kept asking me, 'What about Trae?' and I'd tell her I had to protect him."

The turning point came when Caster talked privately to a presenter who showed her how he modified a lesson on the rainforest for a high school class in which developmentally disabled kids were mainstreamed. "I knew Trae could understand the lesson," Caster says. "Then he said social skills were more important than the rainforest, that if Trae is isolated, he'll never fit in. He said my insecurities were harming my son, that Trae would have true friends, and that he'll get hurt, but he'll be hurt a whole lot more if he's sent out into the world unprepared. That's when I got it."

Swimming in the Mainstream
In August 2002, Trae entered a mainstream classroom. "He has an aide, but it's hard to tell she's his aide because she works with all the kids," Caster says. "The most significant change is that this little boy they called nonverbal, his verbalization is through the roof. He still uses gestures and lots of his words are hard to understand, but it's huge."

"He's making new friends, and he's learning real third-grade things," says Caster of Trae, now 10. "He knows about the Alamo and White House, not just how to put pegs in a pegboard."

Both Caster and Dunnavant recall at the beginning of their Partners' training, Buckner told them the experience would be life changing. They agree she was right."Every year a group of unique individuals from across the state come together to be trained by the best in the country, world-class presenters," Dunnavant says. "You go in with tunnel vision and suddenly your life is changed. You realize at the end you have a bond with every other Partner in the state. I could go to any one of 300 homes in Texas, and they'd say, 'Come in, let's talk.'"

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Leanna Skarnulis is a freelance writer in Omaha, Nebraska.

 


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