The Center for Persons with Disabilities at Utah State University

CPD’s Sherry Joy honored by local Down Syndrome Foundation

October 13, 2016 by JoLynne Lyon

Sherry Joy receives a painting

Up to 3’s Sherry Joy receives a painting and the poem “Welcome to Holland”  from the Northern Utah Down’s Syndrome Foundation during the Buddy Walk in late September.

The Northern Utah Down Syndrome Foundation recently honored the CPD’s own Sherry Joy for her work in behalf of the families of children with Down syndrome. The award marked her record as an advocate over the past 20 years, starting when she co-founded an organization for parents. It began operating as a support group from the Up to 3 Early Intervention program.

“I had families with Down syndrome who were feeling alone out there,” Joy said. “Our goal was just to give them a chance to have support and get together and not feel like they were all alone.”

Families met while their children played. Eventually the families wanted organized activities every month, so they started planning three large ones a year, while Joy continued lining up the rest. The group looped in Common Ground in Logan in order to offer some outdoor adventures. When that started, Joy said, fathers became more involved. Families did more and more of the planning.

Maria Leishman, the Cache and Boxelder Community Leader, has known Joy for 10 years. “We were told there was a little play group,” she said. “It was in the old building that they used to do the [Up to 3] preschool in.” They would come, Joy brought treats, moms would chat.

The current Cache/Box Elder community group of the Utah Down Syndrome Foundation grew out of those efforts. What started as a play group for toddlers continued serving the children and their families as they grew; people from Box Elder and Rich counties joined the members from Cache; and leadership shifted away from the Center for Persons with Disabilities at Utah State University. (Up to 3 is part of the CPD.) The group began organizing their annual Buddy Walks. The foundation, as it stands now,  has been operating in northern Utah for about 10 years.

Joy remained very involved, letting Up to 3 families know about the organization. She recruited volunteers from the Interdisciplinary Disability Awareness and Service Learning class, as well as workers from Up to 3 and people from local churches (all denominations). “I still send out flyers to the younger kids in our program and get volunteers to help with their activities,” she said. She also works to draw in Spanish-speaking parents.

The group remains a place where parents can relax and do the same things any parent would do. “Whether [parents of children with Down syndrome] think they do or they don’t, they still have their guard up when they’re out and about,” Leishman said. The foundation gives them a chance to relax among other parents who understand the issues they face. They’re also able to gather information from other parents who have been there: on heart conditions or hearing aids or glasses.

“I think it’s also great for the siblings,” Leishman said. For her, it’s important that both the children with Down syndrome and their families can have a good time.

Like a good mentor, Joy has watched the association grow up and become independent. When Leishman handed her a painting and recognized her for her work during the recent Buddy Walk, it was a happy surprise.

After two decades of work, it’s good to know the families of children with Down syndrome no longer feel so alone.

Maria and her son Kyler

Maria, her son Kyler and their dog, Jessie. Maria and Kyler started with the Down’s syndrome group when Kyler was a baby.



Multiple CPD services help a family explore new possibilities

October 10, 2016 by JoLynne Lyon

Photo of Aaron and Curt

Aaron works with Up to 3 Early Intervention Program physical therapist Curt Phillips.

Aaron began beating the odds soon after he was born. His condition–trisomy 13–is fatal within the first year, 90 percent of the time.

At two and a half years old, he is something of a pioneer. “Anything he does, we just think it’s great,” said his mother, Kimberly.

With the help of services from the Center for Persons with Disabilities at Utah State University, he is learning communication skills and is preparing to walk–not a small feat for a child with a condition that includes decreased muscle tone, hearing loss and low vision.

He has been enrolled in the Up to 3 Early Intervention program since his first months. With the help of therapists he has improved his mobility and communication skills. The Assistive Technology Lab in Logan modified a walker for him, to help him move around the house and interact more with his family.

He has also received services from the Sound Beginnings program at USU.

Kimberly has seen a lot of growth and progress. “He’s able to communicate in his own way; he’s learned to recognize songs and turn pages in a book, to clap his hands, to sit by himself. He can roll over, he does a half-army crawl to get around, and he is really close to going from a lying position to sitting all by himself,” she said.

He is also showing signs of preparing to speak. “He’s more communicative,” Kimberly said. “He’s starting to express conversation.” He babbles more.

He does it all with a smile. “Unless he is hurt, he’s always happy,” Kimberly said.

photo of Aaron in his walker

Aaron sports a walker that was modified by the CPD’s Assistive Technology Lab in Logan.

Advocates as Leaders

October 5, 2016 by JoLynne Lyon

By Eric Stoker    

Photo of Eric

Eric Stoker

My name is Eric Stoker and I’m a part of the Advocates as Leaders Self-Advocacy Speaker’s Network.  I have been a part of the network for one year, which is amazing.

Let me tell you a little bit about the Advocates as Leaders Network. This network is a part of Utah State University’s Center for Persons with Disabilities, in partnership with the Utah Developmental Disabilities Council.  The network has people with disabilities go out and train self-advocates, parents, professionals, community organizations and business about issues that we face every single day.  We have a total of nine presentations and are always developing new ones.

Each presentation is designed and presented by self-advocates who have expertise in variety of subjects that impact the lives of people with disabilities. We use our skills to dispel myths about what people with disabilities truly believe, cherish and value.  I present on several different topics, but the one I believe is the most important to me is Living Strong with Autism. I want people to know about the history of autism, and how people are successfully living with its challenges.  Another reason I like this presentation is that I can tell my story from when I was first diagnosed with autism and my current achievements.

The presentations the network currently offers are listed below. The new presentations that are in the works are Internet Safety;  Supported Decision Making;  and Managing Your Own Person “Directed “Plan.   The presentation that stood out to me the most is the student led IEP’s.  The reason why this presentation stood out to me was because students are now leading their own IEPs, and speaking out for what goals they want to work on and what they want to do for their future.

In our network, we have 10 speakers that have disabilities living throughout the state of Utah.  We are in the process of hiring 4 more speakers this year to join the network.  If you would like to learn more about our Advocates as Leaders Speakers network or want us to present a certain topic please contact Amy Notwell.

Here is a list of presentations that are currently offered:

Self-Advocacy Speaker’s Network: Living Strong with Autism

The Ins and Outs and Ups and Downs of running your own IEP meeting

Choosing a Supported Life

Language Matters: Respect is the new “R” word

No Limits: Raising Expectations

Self Determination is for EVERYONE

Fair Chance

About the author: Eric Stoker is the information specialist for the Utah Developmental Disabilities Council in Salt Lake City Utah.  He is a part of the speaker’s network and is the author of two books.  He is a big sports fan of football and basketball. Eric is a part of the Consumer Advisory Council and is also a part of the Utah Regional Leadership Education in Neurodevelopmental disabilities as the consumer faculty at Utah State University.

New Frontiers for Families needs your help

September 30, 2016 by JoLynne Lyon

The building that housed the New Frontiers for Families office in Panguitch was destroyed by a tornado earlier this week.

New Frontiers for Families staff members provide after school programs, direct services (wraparound teams and parent peer support), employment support, parenting and education classes for those with complex needs in rural Utah.

Despite the enormous setback, the office has continued to function, but they need your help. A Go Fund Me page makes it easy to contribute to their recovery.

Here is an update from Tracy Johnson, Executive Director of New Frontiers for Families:

The entire building was destroyed, the roof was peeled off and a fire started in the copy room where the furnace was.  The storm brought heavy rain and snow, which caused much of the damage to books, toys and training materials. We were renting the building and it sounds like it is a total loss, and that the building will be demolished.  We working for  no disruption in services so we are continuing to see individuals and families.

All of our books binders and training materials are ruined for upcoming classes (we have a week long training starting next Monday, so we are scrambling).  Some computers, copies, printers, projectors and paper that was is the copy room was destroyed.  We have another location were we provide after school programs that was not destroyed, so we are moving there for now. As we go about our work we are still finding things we have lost: staplers, hole punches, paper cutters,  files, training manuals, etc. We have also lost a lot of toys, books, blankets; things that we have for clients. These were all donations for this we are sad. Many were handmade and meant a lot to us and those who receive them.

We have had so much support from the community, partner agencies, clients and staff in the clean-up and rebuilding (moving things to the storage unit and the after school building). We are so grateful that no one was injured.  We are thankful for the help, donations of time, money and supplies.  Clients are worried about what will happen with their services and supports. They are afraid we will “go away,” so we have had so many calls and taken so much time reassuring them that there will not be a disruption in service.

We are doing ok and we will move forward.  Thank you again for concern!

You can find news coverage of the disaster and aftermath on the Fox 13 website.

Utah gubernatorial contestants agree: Utah health care coverage could be better

September 28, 2016 by JoLynne Lyon

Close-up of doctor holding senior patient hand sitting in wheelchair

Utah Republican Governor Gary Herbert and Democratic challenger Mike Weinholtz agreed on Monday that health care coverage could be better in the state.

They disagreed on plenty, including how to expand Medicare coverage and how much Utah policy makers should trust the Federal government to be a good partner. But both candidates said the Utah Legislature has under-performed in expanding Medicare coverage in Utah.

They addressed the issue during a televised debate at Utah State University on Monday, Sept. 26.

“I’m not satisfied,” Governor Herbert said (he was designated as the first to respond to the question). His proposed Healthy Utah plan would have allowed people to “come in and get some health care, but also to get some training and a job,” he said. The plan failed to get through the Utah Legislature in 2015.

“There are opportunities for us to get out there and work with the legislature,” he said. “We’ve got to convince them that that’s the fiscally responsible thing to do.”

Challenger Weinholtz argued that with the Affordable Care Act, Utahns are already paying taxes that would support extending coverage to many more Utahns–but the legislature has delayed doing so. In the end, he said, they expanded Medicare to an additional 9,000 people, but turned more than 100,000 people away. “It’s extremely disappointing,” he said. “That is a moral outrage.”

While the candidates agreed the Utah Legislature could do more for Utah’s uninsured, they disagreed on whether Utah should do more to implement the Affordable Care Act.  If the issue is using federal money for roads or education, lawmakers don’t ask whether the Federal Government would be a good partner, Weinholtz said.

Herbert said that under the ACA (or Obamacare), some health care companies have withdrawn from the ACA insurance exchanges, and some companies failed. He argued Utahns did support Healthy Utah–but the Utah Legislature did not listen to them.