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.



Family Faces of Disability photo album wants you!

November 2, 2012 by Sue Reeves

Help the National Council on Disability (NCD) bring its new report, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” to life by submitting a photograph of your family to NCD’s new “Family Faces of Disability” photo album, to be shared on the NCD Facebook page.

With the “Family Faces of Disability” photo album, NCD is seeking photos that capture your family’s day-to-day life as a way to personalize the issues faced by parents with disabilities in the United States. For accessibility reasons, all photographs submitted to NCD’s “Family Faces of Disability” photo album MUST include a written description of what is happening in the photo. NCD retains the right to remove any photo or its accompanying description without warning, if either is deemed inappropriate.

By submitting your photograph, you grant permission to the National Council on Disability to display these photographs on NCD’s website, Facebook and Twitter pages, or future print publications.

Please send your photos and descriptions to: FamilyPhotoAlbum@ncd.gov.

View submissions to NCD’s “Family Faces of Disability” photo album on Facebook here.

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Indian Children’s Program

January 10, 2011 by JoLynne Lyon

Landscape of the desert west of Albuquerque, New Mexico, taken in the Indian Children's Program service area.

The Indian Children’s Program (ICP) has provided services to children with disabilities since 1990. It is designed to build and strengthen the capacity of the family and community to more effectively support the needs of children with disabilities.

The Center for Persons with Disabilities works with a consortium to provide consultation and technical assistance. It serves children, families, and agencies on the Navajo, Hopi, and multi Pueblo reservations in the four corners area.

The ICP model features the following characteristics:

A baby in traditional clothes and a Calvin Klein shirt plays on a blanket

Services are determined by the child’s need – where necessary, ICP interdisciplinary teams provide diagnostic assessments. Primary emphasis is on follow-up services rather than diagnosis and evaluation.

Community-based Services – parents and families choose where they want their child to be  served and where they want to receive services.

Follow-up services – follow-up focuses on providing resources and supports to build  the capacity of the family including advocacy information, individual service plans, technical assistance, and cross agency referrals.

Cultural relevance – services are culturally  appropriate and respect the dignity of the  individual, the family, and their culture.

Filling gaps in existing services–ICP services are selected to fill gaps in the existing service system and address individual needs.

Evolution of Program Focus
During its twenty year history, the Indian Children’s Program has refined its approach and the way services are provided to meet the evolving needs of individuals, families, and communities.

The shifts in focus have gone from providing maintenance and care to independence; from providing services to support; from running government-operated programs to using private providers and encouraging self advocacy; from trying to change the individual to modifying the environment. The services are to be initiated and managed by the family, and the goal is to foster independence and choice.

Photo of a Native American family. The baby is in a cradle board.

Note: This is the eighth in a series of blog posts summarizing presentations made by CPD staff members in late October and early November. They attended the 2010 conference for the Association of University Centers on Developmental Disabilities. Those of you who can stop by our building can check out the research posters in the hallway leading to the CPD’s southwest door.

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New Year, new title, new day program supervisor for CPD’s adult program

January 6, 2011 by JoLynne Lyon

Day program supervisor Dauri Bastian, right, works with BRASC participant Heidi Hill last year.

The Bear River Activity and Skill Center is now the Developmental Skills Laboratory, or DSL. Program Coordinator Drake Rasmussen said the change reflects the DSL’s relationship with Utah State University.

The DSL program is designed to support adults with relatively severe disabilities by training and maintaining the skills necessary for their greatest independence. In addition, it provides participants with activities that encourage their inclusion into the community.

Its name change underscores the program’s role as a place for research and real world experience. Students in both speech and music therapy come regularly to work with DSL participants and receive training in a real environment. The DSL is also the setting for graduate-level behavioral research.

In addition to the name change, the DSL welcomes its new day program supervisor. Dauri Bastian has worked at BRASC for three years and will now replace Suzanne Wiser.

“” I want to help each individual participant reach his or her full potential by creating a warm and inviting environment,” said Bastian. She plans to focus on social relationships and learning activities.

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Putting the autism puzzle together

December 17, 2010 by JoLynne Lyon

The ASSERT classroom provides direct services to children with ASD--and it has more potential clients than it can serve.

This month, Utah State University experts in the autism field shared ideas on studying autism, working with the families of people who have autism spectrum disorder, and preparing them for life after high school.

Those at the autism summit work on different angles of the Autism Spectrum Disorder puzzle. Some provide direct services, others train leaders and self advocates, still others conduct research on the best treatments, offer technical assistance to communities or investigate the genetics of ASD. They represented the Center for Persons with Disabilities and three departments within USU’s College of Education and Human Services.

Still, some common themes emerged. Direct service providers within the college often have many more potential clients than they can handle. Adults with autism—and many other disabilities—often struggle to transition to adult life,  find work and live independently.

Those who attended the summit also discussed challenges specific to their own fields. Among their concerns:

• Although genetic research in autism is a very active field–and many research groups claim they have autism-gene associations–only a small percentage of autism cases can firmly be associated with genes, said the CPD’s Dr. Anthony Torres.

• Trainees in the field who finish their college education are likely to enter a real world where resources are scant, especially when it comes to serving adults with disabilities. It makes educating future leaders difficult, said CPD Director Bryce Fifield. Should faculty members train students to follow advanced methods and practices that are not available in the real world, or educate them for the reality they will face when they graduate?

• Insurance companies balk at funding autism treatments in a field where evidence-based, successful approaches are just emerging.

Their conclusion: A more comprehensive approach between the many disciplines that work with ASD could help resolve these issues. The leaders within the College of Education agreed to share information across disciplines and departments to move toward that goal.

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