Assistive technology director named to national board

October 28, 2016 by JoLynne Lyon


Sachin Pavithran, program director for the CPD’s Utah Assistive Technology Program, was recently named to the Association of University Centers on Disability’s Board of Directors.

AUCD is a network of interdisciplinary centers dedicated to serving people with disabilities, their families and communities. The CPD is a network member.

“My vision is for AUCD to broaden its scope and reach in policy and practice of inclusion within its network,” Pavithran said. He plans to do this by encouraging an open dialog on matters of diversity, recruiting people from diverse ethnic and LGBTQ backgrounds, and getting commitments from network partners to make inclusion a priority.

Pavithran was born in India and raised in Dubai in the United Arab Emirates before he came to the U.S. at the age of 17 to pursue a higher education. He serves as an adviser to the executive director of the State Office of Rehabilitation, and he is on the Executive Management Team of the Utah Department of Workforce Services. On the national level, he is vice chair of the Assistive Technology Act Programs and was appointed by President Obama to the United States Access Board.

Internationally he has worked on assistive technology, equal access and disability policy in The United Arab Emirates, India, Egypt, Syria, Philippines, Thailand, Turkey and Mexico.

“I am excited to serve on the AUCD Board,” Pavithran said.  “I look forward to bringing my expertise to the table. We can engage in a dialog on helping to bring equality to all people with disabilities.”

The Center for Persons with Disabilities and the Utah Assistive Technology Program are both located at Utah State University.

Video helps higher education staff understand people on the autism spectrum

October 24, 2016 by JoLynne Lyon



“Have you ever had a student in your class who came to ask you for information, and immediately you felt like there was some social awkwardness?” a young voice for autism asks his viewers.  “Well, I admit it, that is me.”

The voice–John Robert Johnson–is fictional, but he has research backing him up as he  briefly takes his audience through the higher education experience from his point of view. Voiced by Shawn Wright, “John” represents the findings of a team of Utah Regional Leadership Education in Neurodevelopmental Disabilities program researchers. Led by Dr. Gwen Mitchell of the University of Idaho, they come from five different universities, including the Center for Persons with Disabilities at Utah State. Their message is for faculty and staff in higher education.

“There is a lot to be done to get faculty and staff in university settings up to speed in knowledge and understanding of the autism spectrum,” Dr. Mitchell said. The 10-minute video entitled Autism–University Faculty and Staff: What We Know, What We Do Not Know and What We Need to Know is intended to help bridge that knowledge gap. It discusses the rights people on the autism spectrum have as students, and the responsibilities faculty and staff members have at their institutions. People on the spectrum are covered under the Americans with Disabilities Act and section 504 of the Rehabilitation Act.

But mostly, John’s story is personal. “I have a hard time with social rules,” he says. “I have never seen social rules written down… You know the rules, and at times I know them, but a lot of the time, I don’t have time to think about what you want before I feel pressure to say something. And at times, I get lost in my own head.”

He explains other difficulties: trouble initiating and maintaining eye contact; difficulty explaining why he comes into an adviser’s office; challenges adjusting to changes in the environment or how things are done in the classroom.

“There are some of us on the spectrum that are working hard not to call attention to our differences, and have not asked for accommodations with the disability supports office,” John said. “And we’re doing pretty well. But if you see me struggling in some area, it would be nice if perhaps you’d talk to me.”

The team’s video and research will be presented during the Association of University Centers on Disabilities conference in Washington, D.C. in December. The researchers included Mitchell, Howard Fulk and Ashley Kuznia of the University of Idaho; Nelson Atehortua of Utah Valley University; Katie Ahlers of the University of Montana, Ron Bean of Utah State University and Jamie Hammer of Minot 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.