When Miriam Tribe cares for her two youngest daughters on her own, there are times when she has to choose which one gets her attention. This difficult reality stems from the unique challenges that come with raising children who have complex needs. Miriam is not alone in her struggles; many families face similar dilemmas as they navigate the landscape of disability services.
There’s 13-year-old Harper, who has Cornelia de Lange syndrome and a rare genetic intellectual disability called TBCK syndrome. She can spend hours quietly jumping on her family’s backyard trampoline, finding solace in the rhythmic motion. But Harper often tries to hurt herself, sometimes punching herself or hitting her head against a wall. “She’s very violent with us,” the mother said. “And very, very violent with herself.” This heartbreaking situation exemplifies the intense pressure on families dealing with disabilities, where moments of joy are often overshadowed by moments of distress.
Then there’s Faye. She’s a curious 9-year-old who just started to speak this year, opening up a new world of communication for her. She also has TBCK syndrome. Faye is more destructive: She rips at books and flooring, draws on walls, and dumps out liquids from the refrigerator. Additionally, she runs away if she can get out of the house, driven by an adventurous spirit that puts her safety at risk. “No awareness of the street or cars,” Miriam said. “She wouldn’t be able to say her name or where she lives. She’s totally vulnerable.” The juxtaposition of Faye’s curiosity and lack of awareness paints a vivid picture of the challenges faced by families raising children with disabilities.
On good days, Miriam struggles to care for both of them, juggling their needs while ensuring they feel loved and supported. It’s on bad days that she has to choose between them. “If I have to be with Harper, I pretty much know that somewhere Faye is making a mess,” Miriam said. “And I just have to let it happen.” This heartbreaking admission underscores the reality that many parents face: the constant balancing act of providing care and attention while dealing with limited resources and overwhelming responsibilities.
Miriam and her husband, Allan, do all they can for their daughters. They also rely on their teenage children, who pitch in with diaper changes, meltdowns, and bedtimes. This family support system is vital, but it’s not enough. The reality is that they need more help to ensure that both daughters receive the attention and care they deserve.
Both Harper and Faye qualify for funding from Utah’s Division of Services for People with Disabilities (DSPD), which would allow their parents to hire a nurse caregiver to come to their home or to access Medicaid money and other services that would support them. However, there’s a long waiting list for this funding—more than 5,700 Utahns are currently on it. This backlog poses a significant barrier for families like the Tribes, who are desperately seeking resources to aid in their caregiving journey.
Harper has been waiting nine years for services, but she may soon get access. The last time the Tribes checked, Faye was No. 768 after they sent her application five years ago. This waiting list has existed for at least 25 years in Utah, according to DSPD. And while the state government office is helping more people now than ever before, the waitlist is also the longest it’s been since at least 2010, according to state data.
The reason for this prolonged waiting list is straightforward: there’s not enough money going to the Division of Services for People with Disabilities. The office’s budget is a mix of state funds allocated by the Utah Legislature matched with federal Medicaid money. However, state lawmakers haven’t dedicated nearly enough to meet the needs of families like the Tribes. Disability advocates and families are frustrated that the waiting list continues to grow, especially after Utah changed its constitution in 2020 to allow income tax revenue—previously dedicated entirely to public and higher education—to be spent on disability services, with the promise of more money becoming available.
While state lawmakers did increase DSPD funding the last two years by nearly $9 million—which helped get more than 500 people off the waiting list—they also cut income taxes during those years, reducing the amount available to spend on education and disability services by $640 million. With this infusion of cash, the number of people on the waiting list fell in 2022 for the first time in years. However, it grew by 10% the following year, reaching 4,764, marking an increase of nearly 150% over the past decade. This rollercoaster of funding and needs highlights the precarious position many families find themselves in.
Now, Republican lawmakers are asking voters to approve Amendment A, which would remove the provision in the state constitution that commits income tax revenues exclusively to public schools, colleges, and disability services. If voters pass the amendment, legislators would first have to allocate income tax revenue for school enrollment growth, inflation, and an educational reserve fund. After that, they could use the remainder of the estimated $8.4 billion any way they see fit.
State Sen. Dan McCay, R-Riverton, who sponsored Amendment A when the Legislature passed a bill placing it on the ballot, believes in the potential of this amendment to alleviate the waitlist. He supports the idea of freeing up funds to ensure that more resources flow to families in need. “The DSPD waitlist is one place I felt like the state gets a strong return on every dollar invested,” he said. “DSPD money goes right to supporting families with critical needs in a way that brings real, measurable results.”
However, the outlook for Amendment A is murky. The Utah Supreme Court recently upheld a ruling that struck another proposed amendment from the ballot, partly because the Legislature had failed to comply with a constitutional requirement that all amendments be published in newspapers two months before the election. Amendment A wasn’t published either, and the Utah Education Association—opposing it over concerns it would erode school funding—is asking a court to have it removed from voters’ consideration as well.
McCay concedes that it is likely to happen, which he said would be unfortunate. “Every year the list and needs grow, and we can barely keep up with the financial needs of those currently served,” he said. “I feel like Amendment A could help, and it’s likely we will have to go back to the drawing board to meet those needs.”
Yet, Nate Crippes, who is the public affairs supervising attorney for Utah’s Disability Law Center, worries that if Amendment A passes, programs serving people with disabilities will get overlooked. The nonprofit is concerned that this amendment to broaden how income tax revenue can be spent will not help those on the waiting list unless legislators prioritize it. He pointed out that such prioritization hasn’t happened since voters opted to allow income tax revenue to go towards programs for disabled Utahns in 2020. In the years since, Crippes noted that lawmakers have funded school vouchers, which could be used for private schools that are not required to accommodate special education needs.
“We have not seen some major influx of cash to disability programs since that change,” Crippes said, “so I’m not sure why we’d want to give more flexibility that risks cutting special education funding.” This perspective raises critical questions about the long-term implications of financial decisions made at the legislative level.
This skepticism is shared by Janis Ferre, a familiar face in Utah’s Capitol who has advocated for people with disabilities for nearly four decades. Over the years, she has witnessed fluctuations in the waiting list, but the demand for disability services has consistently outpaced the money available. She describes herself as an idealist who remains hopeful for change but harbors deep reservations about the state legislature. “I have a basic distrust of the Legislature. And on Amendment A, I’m very, very wary. … Taking the earmark off the income tax, I just don’t trust them,” Ferre said.
The ongoing battle for funding and resources continues to weigh heavily on families like the Tribes. With the prospect of change on the horizon, the stakes are higher than ever. As Utah grapples with its commitments to education and disability services, the future of families reliant on these essential supports hangs in the balance. The question remains: will enough be done to ensure that no child is left waiting for the care they need?
Helping Disabled Utahns
In Utah, the Division of Services for People with Disabilities (DSPD) plays a crucial role in supporting individuals with disabilities and their families. The agency funds contractors who provide various services, ranging from hiring caregivers to assist burnt-out parents to offering supported living arrangements and job training opportunities. These services are vital, as they help disabled Utahns lead more fulfilling lives and alleviate some of the burdens on their families.
“Some Utahns are in a situation where they and their families can meet their needs on their own,” said DSPD director Angie Pinna. “But some people just can’t.” This statement underscores the diverse spectrum of needs among disabled individuals in the state. For some, services provided by DSPD can cost just a couple thousand dollars a year, while others may require assistance that exceeds $100,000 annually. According to DSPD, the average yearly cost per person is estimated at around $76,100, which highlights the significant financial implications for families seeking support.
Funding for DSPD comes from both state and federal sources. A third of its budget is derived from state funds, while the remaining portion comes from Medicaid, reflecting a collaborative effort to support vulnerable populations. Currently, the state office provides services to more than 7,300 individuals. Once someone begins receiving help from DSPD, that support continues for the rest of their life.
“As people’s needs change — as they age, whatever it may be — if they have an increased need, we’re able to also meet that increased need,” Pinna said. This commitment to ongoing care ensures that individuals receive the assistance they require, regardless of how their circumstances evolve.
State Rep. Ray Ward, R-Bountiful, emphasizes the need for consistent funding when legislators discuss budgeting for these essential services. He notes that a one-time boost to DSPD’s budget is insufficient. “They need the help,” he said, “and you are agreeing to provide them those services forever when you bring them off the waiting list.”
Rep. Ward has actively advocated for increased funding for DSPD. He points out that in the past three years, a significant number of individuals have been removed from the waiting list due to enhanced ongoing funding from legislators. However, he acknowledges that this progress is minuscule compared to the actual demand for services. “To me, the only solution is to get the Legislature as a whole to decide that they want this enough to fund it over time in a serious way,” he said.
In a similar vein, Rep. Jennifer Dailey-Provost, D-Salt Lake City, has also been a strong proponent of increased support for DSPD. She sponsored a bill last session aimed at reallocating $400 million from transportation funds into an investment account, using part of the interest generated to help address the waiting list. Unfortunately, that initiative did not pass. “The $5 million appropriated last year doesn’t get us close to what we need, but it’s more than we’ve done in a long time,” she said. Budget analysts estimate that approximately $80 million would be required to fully cover everyone currently on the waiting list. Dailey-Provost further highlights that many more individuals who could be eligible have not signed up due to the daunting wait times, which can extend to 20 years or more.
“It’s horrifying. It makes me really, really frustrated,” she expressed, “when we’re paying for … pet projects that just aren’t critical to people’s health and well-being and their ability to live and keep their families intact. It’s really hard to see money going to those things instead of things like DSPD.” This frustration reflects a broader concern that essential services are often overshadowed by less critical expenditures.
Utah employs a “needs assessment tool” to determine where individuals rank on the waiting list. Caseworkers evaluate several factors, including the urgency of an individual’s needs, the severity of their disability, the capabilities of parental caregivers, and the length of time someone has spent waiting for services. Those with more urgent needs may rise to the top of the list, while others with less severe requirements could remain on the waiting list for over a decade.
Pinna has noted that while some people must wait for services, Utah is able to assist a limited number of individuals using support waivers. These waivers provide a small number of services for a limited timeframe. Currently, there are 121 Utahns using this form of support, but it is a temporary solution to a pressing need.
The situation in Utah is reflective of a national issue. According to a 2023 report by the Kaiser Family Foundation, 38 states have over 700,000 residents waiting to receive disability services. Texas leads the way with an astounding 342,575 individuals on its waiting list, followed by South Carolina with more than 41,000. In terms of per capita waiting lists, Utah ranks 16th in the nation, underscoring the significant demand for disability services in the state.
Families Still Waiting
For some families, the need for outside support is becoming increasingly urgent as their children grow. For instance, the Tribes family has decided to ask their older children to refrain from getting jobs, so they can provide extra assistance with their younger children, Harper and Faye. However, as the teens approach adulthood, the family realizes they must secure adequate care for their children.
“We have no options unless we get care by that point,” Miriam said. “We have to get care. Hopefully it will come through.” The physical demands of caring for Harper and Faye are intensifying as they grow larger. The girls require diapers, assistance with bathing, and help during mealtime. With Harper becoming stronger, managing her daily needs has become increasingly challenging for the parents.
“I got kicked in the jaw and knocked off the bed today changing her diaper,” Allan shared during an interview in September, illustrating the physical toll that caregiving can take.
Miriam expressed feelings of guilt about being on the waiting list, worrying that there are families with greater needs or those who may face language barriers that hinder their ability to access services. They’ve felt they had to “claw their way to the top” of the waiting list, often taking advice from other parents to share their struggles with officials. Allan recounted this advice, stating, “Anytime you’re going to cry in tears, call [the DSPD social worker] instead and cry to them.”
The Tribes family is frustrated that legislators have not allocated sufficient resources for DSPD to serve everyone who qualifies for care. “Utah is a state that has families and supposedly that’s important, but then [lawmakers] don’t actually prioritize education or support,” Miriam lamented. “It just feels like so much legislation is, ‘business first,’ and that’s where the money goes.”
Olivia Heiner, another individual on DSPD’s waiting list, has been waiting for 10 years. Her mother, Melissa Heiner, shared that Olivia is currently about the 3,000th person in line. After adopting Olivia at three months old, the family learned of her traumatic brain injury, which resulted from abuse. Olivia is now 18 but functions cognitively at a much younger age. The Heiners are seeking respite care through DSPD so they can have some time together as a couple.
“We never really get to go out or anything,” Melissa said, “because there’s really no one to ever watch her or take care of her. It’s just me and my husband all the time.” Additionally, Olivia would qualify for Medicaid, which is critical for her care, especially since she is no longer covered by her previous Medicaid insurance as an adult. The Heiners have faced the heartbreaking decision to cancel doctor appointments due to Olivia’s lack of insurance, a reality that weighs heavily on Melissa.
She worries that, given the slow pace at which individuals come off the waiting list, Olivia might not receive the support she needs until she is 40 years old. “It just feels really helpless,” she said, her frustration palpable.
‘We Were in Constant Crisis Mode’
Sterling and Heidi Hilton’s experience echoes the challenges many families face. Nearly 20 years ago, they adopted Chetna, a girl who was deaf and blind. As they navigated her care, they discovered that she also had cerebral palsy, necessitating more extensive support than they had anticipated. Chetna relies on a wheelchair, is non-verbal, and requires a gastrostomy tube for feeding. Recognizing the need for assistance, the Hiltons placed Chetna on DSPD’s waiting list.
Two years later, after a family crisis that left Heidi hospitalized in a diabetic coma, Chetna finally reached the top of the list. Sterling struggled to juggle his responsibilities as a father to Chetna and his three other children while trying to maintain his teaching job.
“We just didn’t think, okay we’ll adopt this child and then fall apart,” Heidi recalled. They have benefited from DSPD services for the last 15 years, allowing them to hire caregivers who assist with Chetna’s daily needs. This support has been invaluable, providing the Hiltons with the opportunity to rest, run errands, and attend to household tasks. Furthermore, Chetna qualifies for a Medicaid waiver, ensuring secondary health insurance that covers her medical needs.
“It gave us enough breathing space that we could handle this chronic situation with a little bit more grace and some breathing space,” Sterling reflected. “We were in constant crisis mode.”
Currently, the Hiltons estimate they receive around $15,000 to $16,000 annually from DSPD, enabling them to hire qualified caregivers for about 15 to 20 hours per week. The family seeks to enrich Chetna’s life, finding opportunities for her to engage with the community. For instance, they ask caregivers to take Chetna to college classes, the local swimming pool, or even the mall, where she enjoys shopping.
All caregivers are trained to meet Chetna’s specific needs, including changing her gastrostomy tube and providing assistance with her wheelchair. The family remains hopeful that there will be an increase in funding for DSPD, ensuring that future families receive the necessary resources. “It’s life-saving,” Heidi stated. “I hope it never changes.”
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