Self-advocates, family members helped by training program

“I need to talk to you,” said Abby Pearson as she stopped Steven Smith, her state representative, as he tried to rush through the capitol hall to another meeting. She and her father, Jeff Pearson got five minutes of the legislator’s busy day to listen to their concerns. She later spoke with State Sen. Gen Olson at a town hall meeting. At both encounters, Abby wanted answers to some tough questions: “Can we get housing faster for individuals with disabilities? Can we get jobs for special needs kids, people who will pay taxes when they get a job?”

 The Pearsons live in Plymouth. Father and daughter are among the many citizen lobbyists who visit Minnesota’s capitol and state offices, making themselves heard. Abby Pearson’s disability is epilepsy, which in her case was the result of a birth trauma. She requires medication and regular naps to cope with exhaustion.

Father and daughter are graduates of the nine-month long self-advocacy training program, Partners in Policymaking. It is sponsored by the Minnesota Governor’s Council on Developmental Disabilities, which Abby Pearson has chaired. Now 22, Abby Pearson became involved with Partners in Policymaking while she was completing her last year of the Transition program with Intermediate School District 287 in the Twin Cities.

As the 2012 session of the Minnesota Legislature gets underway, many people think of self-advocates as the people who make their case at the state capitol. But self-advocates speak for themselves every day, weighing in on decisions that affect every aspect of their lives. Training programs can be a huge help to self-advocates and their family members.

“I wish we would have done (advocacy training) earlier,” said Jeff Pearson. He and his wife Ellen valued the tips on how to handle the Individual Education Program, or IEP, that was written and discussed between the parents, student and educators to guide her education for each year, from pre-school to graduation.

With the training, Jeff Pearson said, “we would have had more confidence in knowing that it was our right.” He talked about the basic right of individuals with disabilities to have free and appropriate education.

The Pearson family believes that the best tips on getting the best educational plan came from other parents. Ellen Pearson recalled that even as educated professionals, she and her husband were still intimidated by school personnel early in their daughter’s school life and failed to speak up when they had concerns about her learning plans.

While the Pearson’s requests were small, the family was frustrated at every turn. They requested a quiet place for Abby Pearson to rest as one aspect of her disability is a lack of stamina. They asked that a paraprofessional accompany her during the school day. Both requests were denied, as was a request for more computer time.

Elementary school officials even refused when the family repeatedly offered to pay for their board-certified behavioral analyst to meet with Abby Pearson’s teachers. The family believed that this would help teachers better understand how to work with her and guide her behaviors. When school officials finally agreed to work with the professional, a different side of their daughter’s personality was revealed.

Now the behavioral expert is being called in by the school to help other students. Only after Abby Pearson ran out of her school building did the Pearsons come to believe that the school principal did not value special needs students. Following an appeal to the superintendent, they determined that moving to another school was the answer. But the family regrets that so many years were lost in their daughter’s education.

Partners in Policymaking provided train as well as a large quantity of useful resource materials. Partners in Policymaking taught the Pearsons that the school cannot simply say, “We don’t have the money.” Jeff Pearson was surprised at the quality of the speakers that were involved. “Some were real ‘preachers’ and others were more calm but in five minutes you knew that they were real experts in their field and they had everyone’s undivided attention.”

Unsure that Abby would finish the class or find it “too hard,” it was a surprise to her dad that she stayed engaged in each session and became fast friends with others her age, self advocates that she came to admire. Both are very proud that they were on time for every session.

Between each monthly seminar, online learning was required. Each subject covered by an expert speaker was covered in depth. Topics included the history of disabilities and the self-advocacy movement, education, housing and understanding the legislative process. Self-advocacy skills, partnership building and community leadership were also covered.

Abby Pearson has grown in many ways. She graduated from the Vector transition program in Intermediate School District 287, serving the western suburbs and is currently enrolled in eQuality, a day training program that finds work experiences for individuals with disabilities. She has a goal of moving out of her family home into a group home or apartment with a roommate. She also wants to learn to drive and find a job.

The Partners in Policymaking program runs from September to May. The 40 program candidates selected are either Minnesota residents who are parents of young children with developmental disabilities or individuals with disabilities. The goal is for individuals become community leaders and advocates for themselves and others with disabilities. Classes include an overview of federal and state laws regarding benefits and support services for those with developmental disabilities.

For more information, contact Carol Schoeneck at 651-222-7409 x205 (metro area) and 800-569-6878 x205 (Greater Minnesota) http://mngts.org/partnersinpolicymaking/index.html

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