Our Blogs

Utah Mom Leads Campaign to Boost Autism Funding

A Utah mom is leading a passionate campaign to increase autism funding, advocating for more resources for individuals with autism and their caregivers. In addition to her advocacy efforts, she is also innovating by creating specialized eyeglasses for youth with autism, helping them engage more effectively in social interactions. Heidi Kershaw is at the forefront of this effort, organizing community conversations to foster better understanding and support for people with autism. She shared with St. George News that while there are many organizations in Southern Utah that support families with autism, she believes the state could and should do more to provide assistance. Kershaw is committed to not only increasing autism funding but also raising awareness and driving positive change within the community.

The autism spectrum disorder (ASD) encompasses a wide variety of symptoms and severity levels, affecting each individual differently. As the Mayo Clinic explains: “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.” These differences can range from challenges with communication to repetitive behaviors, creating unique needs for every person diagnosed with autism.

In her pursuit of a solution, Kershaw has been meeting with families who have neurodiverse members to identify gaps in Utah’s current support systems. She is working to fill those gaps by exploring successful models in other communities that can serve as examples for the state. One such example is Colorado City, where Kershaw is coordinating with Lenora Jeffs, a mother to 5-year-old Portman, who is on the autism spectrum. Jeffs highlighted the importance of community support for families with children on the spectrum. She noted that understanding the underlying causes of autism, beyond just the diagnosis, can significantly reduce the isolation families feel. Jeffs said, “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.”

In addition to educating the public, Jeffs emphasized the need for accessible community health-related resources, which is particularly challenging when resource information is scattered and difficult to navigate. Jeffs has become a valuable resource for the Hildale and Colorado City border communities, and has also found that the Gut and Psychology Syndrome diet has helped improve her son’s condition. According to Jeffs, “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 actively shares her journey through her blog, A Mom’s Walk with Autism, where she connects with other special needs mothers and provides guidance to over 20 families. Kershaw believes that smaller communities like Hildale and Colorado City are more interconnected, with people caring for each other in ways that larger cities sometimes fail to do. “In that community, they are very much a part of one another’s lives. They understand and fill in for those needs,” Kershaw said.

Kershaw recently had a conversation with four mothers from varying backgrounds, each with children ranging from young kids to adults with special needs. The women discussed how they could support one another and share their experiences. They are also collaborating with the local Chamber of Commerce to raise awareness and advocate for better autism services in their community. “To see that level of network to help one another was really rare and quite beautiful,” Kershaw said.

While efforts like Kershaw’s bring some support, the level of care and resources available to families with autism varies significantly across the country. Kershaw observed that some states offer comprehensive services for people with autism, while others lack even basic support, creating “an actual desert of resources.” In Utah, Kershaw’s research revealed that the Utah Division of Services for People with Disabilities has an overwhelming waiting list, with 4,700 people waiting to receive autism services. The state’s legislature recently allocated $5 million to provide services for just 250 people, meaning only 5% of the people on the waiting list will gain access to the help they need. “In Utah, there’s very little resources that are given to the Department of Special Needs. There’s very few employees,” Kershaw said, underscoring the gap in autism funding and services.

This lack of funding and resources is affecting families deeply. Kershaw explained how the waiting lists for services are long and difficult to navigate. Families are often forced to wait months, even years, for the support they desperately need. In some cases, individuals die before receiving the help they were waiting for. Kershaw’s calls to increase autism funding in the state are driven by the need to address these challenges and ensure that more families can access the services they need.

Katie England, Public Information Officer for the Utah Department of Health and Human Services, shared that the waiting list for services is dynamic, with people continuously applying or leaving the list. England explained that the department uses all available funds to provide services to as many eligible individuals as possible, with a focus on high-need cases. “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,” she said. However, the lack of resources for respite care remains a significant barrier for many families, particularly in rural areas where trained providers are scarce.

To address these issues, England noted that the department is exploring innovative pilot programs and evaluating compensation rates to better incentivize respite care providers. While some families have found success with self-administered services, the challenge remains significant for many. Kershaw highlighted how caregivers often feel isolated and unsupported. “Those critiques create ostracism for that child and the primary caregivers,” she said, noting that misunderstandings about the behavioral manifestations of autism can lead to harmful misconceptions. As Kershaw pointed out, the misunderstanding of autism symptoms often results in families being unfairly judged, creating further social isolation for both the children and their caregivers.

In addition to advocating for increased funding, Kershaw has made strides in technology innovation. She recently spoke at the United Nations in Geneva about how technology could serve as a global equalizer for people in the autism community. As part of her efforts, Kershaw has also developed a tool that helps people with autism engage in eye contact—a crucial step in developing social skills. By leveraging technology, Kershaw’s “Square in the Eye” eyeglasses help autistic individuals make eye contact more easily, fostering communication and socialization. This innovation helps to address two of the three core deficits in autism: challenges with communication and social interaction.

Kershaw’s advocacy is not limited to Utah. She is also working with the Shivwits band of Paiute Native Americans in Southern Utah, where she observed that neurodiverse individuals are welcomed and treated as integral members of society. “Everyone is fully accepted the way that they are born,” Kershaw said. This holistic approach to inclusion highlights the need for communities to adapt and evolve to better meet the needs of individuals with autism.

As Kershaw continues to push for systemic change, she remains committed to raising awareness, improving autism services, and advocating for the increased funding that is so desperately needed to support these individuals and their families. The struggle for better autism resources continues, but with leaders like Kershaw at the forefront, the hope for change is growing stronger.

Get Started with Gracious Growth Today

At Gracious Growth, we are dedicated to providing exceptional support for individuals with autism and their families. Our team of experts offers personalized ABA services in Utah, designed to empower each individual to reach their full potential. Whether you are looking for help with behavior management, communication, or social skills, we are here to guide you every step of the way. With a compassionate approach and proven strategies, we ensure that every client receives the care they deserve. Ready to make a positive change? Contact us today to learn more about how our ABA services in Utah can help you and your loved ones thrive.

Scroll to Top