A mom's mission: Increase autism funding in Southern Utah, launch new technology
St. George News, Stephanie DeGraw
A Utah mom is advocating for more funding for those with autism and their caregivers while creating special eyeglasses for youth with the condition.
Heidi Kershaw is hosting community conversations to increase understanding and support. She told St. George News that many organizations in Southern Utah supports families with autism, but that the state could do more.
The disorder includes limited and repetitive patterns of behavior and a wide range of symptoms and severity. According to the Mayo Clinic:
"Autism spectrum disorder is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication."
Kershaw has been meeting with families with neurodiverse members to learn more about gaps Utah may have in supporting them. She hopes to help fill those gaps and has been exploring the systems within communities that are shining examples from which other people can learn.
In Colorado City, she is coordinating with Lenora Jeffs, mother to 5-year-old Portman, who has autism. Jeffs stated it's vital to have community members supporting families who have a loved one on the autism spectrum.
"It can be so isolating. Part of that support comes in the form of educating friends and neighbors on autism, beyond the label, so that behaviors manifesting from the diagnosis are identified and cared for with love and understanding," Jeffs said. "Another part of that support comes from accessing community health-related resources. This is especially difficult when resource information lives in silos and the family struggles to make ends meet."
Jeffs has become a resource to the Hildale and Colorado City border communities. She also discovered that the Gut and Psychology Syndrome diet is key to improving her son's daily life. The diet follows the premise that gut health is linked with overall physical and mental health.
"Many of the severe problems we've experienced with Portman, such as severe gut problems, staying up all night, sensory struggles, malnourishment, meltdowns, self-harm, aggression toward others, and anxiety, have drastically improved since implementing new dietary strategies," Jeffs said.
Jeffs actively blogs on her Facebook page, "A Mom's Walk with Autism." She connects with friends and community members and helps over 20 other special needs mothers. Kershaw thinks smaller communities such as Hildale and Colorado City tend to care for each other more than large cities.
"In that community, they are very much a part of one another's lives. They understand and fill in for those needs," Kershaw said. "There's a lot of helping hands in that community."
Kershaw added that she recently sat at a table with four mothers from different living situations who had children ranging from youngsters to adults with special needs. The women were discussing helping one another and what each experiences. They are also working with their local Chamber of Commerce to elevate the conversation about special needs, such as autism and the resources in their community.
"To see that level of network to help one another was really rare and quite beautiful," Kershaw said.
The level of care and resources for families varies from state to state. Kershaw said some states have comprehensive services for people with autism and their caregivers. Yet, some places are "an actual desert of resources."
Kershaw's research showed that the Utah Division of Services for People with Disabilities office estimates that 4700 people are on the waiting list to receive services for autism. This year, the legislature allotted $5M to provide access to 250 people, which means 5% of the people on the waiting list can access services. To view the approved funding, view the budget summary here (https://le.utah.gov/interim/2024/pdf/00001946.pdf).
"In Utah, there's very little resources that are given to the Department of Special Needs. There's very few employees," Kershaw said.
She said that once the paperwork is filled out and approved, families are on a waiting list. Kershaw noted that some people end up dying, waiting for the resources that they were not able to access in Utah.
Katie England, Public Information Officer for the Utah Department of Health and Human Services, emailed St. George News to say that the waiting list is dynamic, as people apply for services or leave the waiting list. The percentage of approximately 250 people represented will vary based on the point in time.
England said the People With Disabilities Division uses all available funds to provide services to as many eligible people as possible. The waiting list is not first-come, first-served. She added that people are brought into services based on need, as directed in statute. When applying for services, people fill out a Needs Assessment Questionnaire (https://dspd.utah.gov/waiting-list/), which is updated yearly or whenever their circumstances change.
The questionnaire was developed by the University of Utah, Kem Gardner Policy Institute, after significant feedback from families on the waiting list.
"The result is that someone with very high needs compared to others might come off the waiting list relatively quickly, while other people may spend many years waiting for services," England said. "Sometimes, funding is available to provide temporary services for those on the waiting list."
England added that people on the waiting list can talk with their caseworkers to determine whether any temporary programs or services are available.
Kershaw stated it is still challenging for families to get assistance.
"It is incredibly difficult to get anything. We're even talking about respite care, which is to have someone come in and relieve a single mother or a couple for a few hours a week," Kershaw said.
Finding a trained person to provide respite care can be challenging in rural areas. England said those places have difficulty due to a lack of providers in those communities.
"We are actively studying this problem with pilot programs that look at innovative ways to meet needs in rural communities and evaluating compensation rates for respite care to better incentivize providers to offer this service," England said. "Some families also find success in self-administering their services, meaning they are able and responsible to hire, retain and terminate staff that can provide respite services."
Another challenge caregivers face is isolation. Kershaw said people may understand the word autism but don't understand the symptoms beyond the label. She added that there is a misunderstanding of the symptoms of autism.
Kershaw said when people see the behavioral manifestations of autism, they may not know what it is. They might think the child needs to be better parented, watched, or taught. Still, they don't understand that there's a lot more going on and that it could be autism.
"Those critiques create ostracism for that child and the primary caregivers. And you'll see a big percentage of husbands and wives that don't make it in their relationship through the duration of the childhood because one parent can handle it better than another parent can," Kershaw said. "The one parent who can handle it better becomes super isolated."
Kershaw noticed when she spoke at the United Nations in Geneva about how technology could serve as a global equalizer to people within the autism community who need enhanced services and resources. She attended last year representing the Global Autism Coalition (https://www.globalautismcoalition.org/), a group she founded.
In Southern Utah, Kershaw is in the early stages of working with the Shivwits band of Paiute Native Americans. She observed that the tribe treats neurodiverse children and adults as whole humans who are welcomed in every aspect of society, including grocery stores, walking down the street and community events.
"Everyone is fully accepted the way that they are born. It is within the school setting where an opportunity exists to advance individuals who learn in unique ways," Kershaw said. "Currently, students who need more learning resources work with schools in Colorado City and Fredonia."
Kershaw also developed a new tool that works with the "Square in the Eye" eyeglasses (https://www.squareintheeye.org/) to help with the lack of eye contact in people with Autism Spectrum Disorder. Eye contact is the building block of spoken language. She said studies show eye contact is the key to developing expressive language and helps to activate the socialization part of the brain, which addresses two of the three deficits in autism.
This tool helps making eye contact quicker and easier by leveraging preferred content. Kershaw said that without the autistic individual even touching the tool, the eyeglasses are worn by a parent, therapist, doctor, friend or neighbor.
"It works like a 2-way mirror where the autistic person sees their favorite show in the lenses while the person wearing the glasses can see out just fine," Kershaw said.
She explained that using eye tracking technology, once an eye gaze is made, the image's opacity diminishes, allowing the autistic person to see the eyes of the wearer. As soon as that gets uncomfortable, the opacity increases to show their programming again.
The Utah Division of Services for People with Disabilities has approximately 130 employees. England said external contractors deliver most services. The department is working toward solutions for the long waiting list including:
• The Limited Supports Waiver (https://dspd.utah.gov/wp-content/uploads/2024-LSW-Fact-Sheet-One-Page-Final.pdf) was created in response to the waiting list. This waiver targets participants with low support needs on the current services waiting list. People can receive waiver services while waiting for more comprehensive services.
• People with autism who have Medicaid can receive Applied Behavior Analysis services to help address the symptoms of autism. This benefit is a direct Medicaid benefit and not contingent upon having funding. Services are available to individuals of al ages eligible for traditional Medicaid, meet diagnosis/testing requirements, and can include individuals on the waiting list if they qualify.
• The Adult Autism Treatment Account (https://familyhealth.utah.gov/cshcn/aata/), which is separate provides grants for individuals with autism who are over 22 years old and require significant support for research-based treatments to gain independence, learn vocational skills, and work toward life goals for inclusion in the community. These funds aim to help these individuals continue learning and expanding their skills, gaining more independence to achieve their best quality of life.