Consumer Advisory Council Celebrates Success

JoLynne Lyon

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JJ and his dad, Jason on a hike
Consumer Advisory Cuncil member Mary Kava has advocated for people
with disabilities in her community including her grandson JJ,
pictured here with his dad, Jason.

The Center for Persons with Disabilities’ Consumer Advisory Council is one of the primary guiding bodies of the CPD. Made up of self-advocates, agency representatives and family members of people with disabilities, it sets goals and monitors the progress toward them. Now, the CAC has two openings for family members and one for a self-advocate. Current members have this message for anyone who wants to join: It’s worth the time. “It’s been phenomenal,” said Mary Kava, a board member and Castle Dale resident. “I started off with a boy on the autism spectrum. Knew nothing about it.” But through the connections she made with the CPD, she was able to network with parents and professionals who could help not only her family, but others in the region. “When you’re dealing with someone with a disability, and all the pressures with that, it’s been great to have resources and people you can talk to,” she said. For example, when a woman in Kava’s community discovered her adult son on the autism spectrum needed sudden surgery on his mouth, Kava was able to step in and help. Insurance wouldn’t cover the procedure because the man had already maxed out his dental coverage for that year. Kava put a message out through the CPD’s networks that the family needed help, and connected with a doctor in St. George who was willing to do the surgery free of charge. Then, after speaking to other officials in Utah, they found a way to have insurance cover the hospital costs that had previously been denied. When another young man—Kava’s grandson—was isolated on a school bus because the driver feared autism was contagious, Kava was again able to connect professionals with the school district. With her help, they ensured the boy was not isolated and that district employees understood more about autism spectrum disorder—which is not communicable. “It makes you feel good, being part of something that is helping people,” Kava said. Her membership includes two meetings a year, but if she can’t make the trip she can attend by phone. Kelly Holt is a self-advocate who is also the committee chair. “I feel like people that have a disability, and also parents and agency members, should try to come out more in the community and get involved,” she said. “They can learn by speaking up for themselves. Sometimes they don’t know what to say.” For Kava, the connection to the CPD is all the more valuable in rural Utah. “We don’t have all the services that they do in Salt Lake or Ogden or even Logan … so that’s one thing I like about the board, is that it’s statewide,” she said. She applauds the CPD’s efforts to reach out to rural Utah in its recent five-year plan. CPD Consumer Liaison Gordon Richins encourages other potential board members from rural Utah to apply.

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