The CPD’s consumer advisory council celebrates successes, seeks new members

February 23, 2017 by JoLynne Lyon

photo of a man and a boy 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 three openings for family members and one for an agency member. 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. To receive an application, contact him either by mail or email.

For more information on the CAC and what it does, visit their page on the CPD website.

METAS group teaches independence, takes an international view

February 20, 2017 by JoLynne Lyon

Sachin plays ball with a young student

The CPD’s Sachin Pavithran plays ball with a young student.

The idea for METAS started in 2015 with some conversations—the kind that could only happen between blind self-advocates from diverse backgrounds.

“We’d been talking about services in the U.S. and how people here have opportunities to be more independent. We started getting into conversations about how those services are not available to kids who are undocumented, or in other countries,” said Sachin Pavithran.

Pavithran directs the Utah Assistive Technology Program at the Center for Persons with Disabilities. He is blind, he was born in India and grew up in Dubai before coming to the US to pursue a higher education. And, after taking part in those conversations with like-minded people, he added another title to his resume in 2016: Treasurer for METAS (Mentoring, Engaging and Teaching All Students). The group’s other three members all have strong backgrounds in advocacy and education.

Together they developed a curriculum, and then they started taking it abroad. Their focus was on fellow educators and professionals, giving them a chance to see their students do more things independently. “Their philosophy is more about taking care of the kids…  Everything is done for them,” he said. “Ours is getting them to do it on their own.”

Last May, they visited a group in Guatamala. None of the children they encountered there had a cane, so METAS introduced canes and worked with students on mobility. They also focus on independent living, sports like goal ball and beep baseball, and self-advocacy. “There’s not a lot you can do in a week, but we planted a seed of what is possible,” Pavithran said. “A lot of it is confidence building and helping them think there is a future for them.”

METAS also makes an effort to meet with policymakers wherever they go. It’s important to see what is working in each local area, Pavithran said. “They have things figured out that work for them in their environment.”

The group has received requests to visit groups in Bolivia and some African countries. They have also made connections with companies and individuals who can help with funding. Materials have been donated from different sources.

For more information, visit the METAS homepage.

Young students try using canes in Guatemala.

METAS works introduces skills for independence, including orientation and mobility.

Legislators need to hear from you about Up to 3

February 17, 2017 by Kelly Smith

Mother with twin 2-year-olds“So much help and support! We don’t know what we would have done without them!”

“The home visitors were so kind and helpful. She helped me understand how to help him [her 2-year-old son] without making me feel like I should have known.”

“To find out a service like this existed was such a blessing in our lives!”

These are all statements from Utah families with children receiving services from the Up to 3 early intervention program at the CPD. State funding for the program is currently in jeopardy since the funding request was not prioritized above the funding line by the legislative appropriations subcommittee. The Executive Appropriations Committee must now be requested  to provide at least the $1.5m in funding that directly funded Up to 3 contracts last year. The following statement outlines that request:

Baby Watch Early Intervention experienced a 30% increase in children enrolled in the last two years.  The 2017 Baby Watch funding request was for $2.7m ($1.5m ongoing funding and $1.2m of new funding).  Baby Watch received one-time funding of $1.5 million from the legislature for this current contract year, but there is no promise of making this ongoing.  If the legislature does not vote to fund Baby Watch Early Intervention Caseload increase this year, it would mean a decrease of 1.5 million dollars statewide for early intervention services. This would decrease vital services for children with developmental delays or disabilities in Utah.

 The Up to 3 early intervention program  provides services to children with disabilities and developmental delays living in Box Elder, Cache, and Rich counties. There are 15 other contracted providers in the state similar to the Up to 3 program. Since 2014, the program has experienced a 49% increase in the total children served with no additional ongoing state funding to support this growth. At a minimum Baby Watch needs to have the $1.5m either as ongoing funding or as another year of one-time funding. Families depend on these critical services to optimize their child’s developmental potential, minimize the impact of disabilities and improve lifelong outcomes. This is the message the members of the Executive Appropriation Committee need to hear.  Please take some time and contact the members of the Executive Appropriations Committee and ask them to continue to fund the Baby Watch program for $1.5m for another year!  

For more specific information on this urgent request, click here.

Contact information for members of the Executive Appropriations Committee is available here. Be sure to click on the “members” tab, and then click on the desired representative for complete information.

 If you have questions or concerns regarding this request please contact CPD staff members Sue Olsen at 435-797-7461 (sue.olsen@usu.edu) or Marla Nef at 435-797-2043 (marla.nef@usu.edu).

Physical Therapist working with young girl wearing leg braces

URLEND collaborates on attitudes toward sexuality survey

February 15, 2017 by JoLynne Lyon

Graphic encouraging participation in the study

The Wyoming Institute for Disabilities (WIND) and the Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) members are surveying the attitudes of developmental disability providers, medical providers, and mental health providers regarding the sexuality of people with intellectual disabilities.

The results of the study will help researchers better understand these attitudes within Montana, Utah, Idaho, and Wyoming. The study will assist members of the URLEND program to better understand provider attitudes regarding the expression of sexuality of persons who have ID. This information may provide future direction of work regarding how to best support the sexuality of people with ID.

 

Participants will be entered to win 1 of 10 Amazon gift cards. All survey answers will be kept confidential, and all data will be de-identified and aggregated. To participate, go to the survey on the URLEND website.

CPD helps award-winning school with AT project

February 7, 2017 by JoLynne Lyon

students work at tables with PVC pipe

Sunrise Ridge students work on devices for children with disabilities.

Last week, a St. George classroom-full of middle-school students blended science, engineering and technology with a genuine desire to help real people–and CPD staff members were there to help it happen.

“They were having a blast, and so was I,” said Up to 3’s Amy Henningsen, who went to provide her expertise as an occupational therapist.

“We had the moms [of children with disabilities] present the child and their struggles,” said Burke Jorgensen, a therapist with Dixie Regional Pediatric Rehabilitation. He brought in two families he worked with and had them talk about their needs to Angie Frabasilio’s class at Sunrise Ridge Intermediate. “Then the kids had to find solutions to help them. I was amazed at how well they thought through the problems. Then they came up with some really good solutions, some I wish I had thought of.”

Henningsen and Logan AT Lab Coordinator Clay Christensen coached the students on assistive technology techniques. Their teacher, Angie Frabasilio, planned to have her students work on assistive technology this year, regardless. When their proposal to help children with disabilities gain more independence won $25,000 from the Samsung Solve for Tomorrow competition (they were winners at the state level), that was even better.

people gather around a little girl in a custom-made chair.

Students in St. George make devices for children with disabilities.

That was before the CPD and other professionals came to their class. Now, they will put together a video of the activity they did last week, then submit it to Samsung for a chance to win at the national level.

During last week’s exercise, the AT Lab’s Christensen arrived onsite with tri-wall (a thick corrugated cardboard packaging material) and PVC pipe–two favorite materials for assistive technology projects. “We asked them, ‘What would you do, using this material?'” he said. Then the brainstorming began.

The students learned to assess the needs of the families they met, then designed and built items like specialized chairs and a device that helped a girl who uses a wheelchair to stand. They also made a walker, iPad holder and specialized toy holder from PVC pipe. “It was beautiful because they wanted to make the design perfect for the kids,” Jorgensen said.

“Clay was the master builder, and then the clinical guys were in there saying, ‘This is how the support needs to happen,'” Frabasilio said. “Amy’s got such a natural way with kids, she can figure out what level the kids are at, and she was great at evaluating them. … It was a great combination. The kids got a huge amount of experience with it.”

Adults also came in to participate–health care professionals, a student in training and several educators. Reporters were there, too. For a look at the action in the classroom, watch the ABC 4 News segment.