Thousands of Utahns with disabilities wait years for crucial state help. Could the wait get even worse?

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.

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. 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.”

Then there’s Faye. She’s a curious 9 year old who just started to speak this year. She also has TBCK syndrome. Faye is more destructive: She rips at books and flooring, draws on walls, dumps out liquids from the refrigerator. And she runs away if she can get out of the house. “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.”

On good days, Miriam struggles to care for both of them. It’s on bad days that she has to choose.

“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.”

Miriam and her husband, Allan, do all they can for their daughters — and their teenage children pitch in with diaper changes and meltdowns and bedtimes. But they need more help.

Both Harper and Faye qualify for funding from Utah’s Division of Services for People with Disabilities, 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.

But there’s a long waiting list for this funding — more than 5,700 Utahns are currently on it.

Harper has been waiting nine years, but she may soon get into services. The last time the Tribes checked, Faye was No. 768 after they sent her application five years ago.

This 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: 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. But state lawmakers haven’t dedicated nearly enough to meet the need here.

Disability advocates and families like the Tribes are frustrated that the waiting list has continued to grow, especially after Utahns voted in 2020 to change the state constitution and 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 those years, reducing the amount available to spend on education and disability services by $640 million.

With the infusion of cash, the number of people on the waiting list fell in 2022 for the first time in years, but grew by 10% the following year to 4,764, which marks an increase of nearly 150% over the past decade.

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 use the 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.

Amendment A

State Sen. Dan McCay, R-Riverton, who sponsored Amendment A when the Legislature passed a bill placing it on the ballot, said he supports whittling away at the waitlist and believes more money could flow to the effort if voters approve the proposed amendment.

“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.”

The outlook for Amendment A, however, is murky. The Utah Supreme Court recently upheld a ruling that struck another proposed amendment from the ballot, in part 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 — which opposes it over concerns it would erode school funding — is asking a court to have it removed from voters’ consideration as well.

McCay concedes that 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.”

But 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 skipped over. The nonprofit is concerned that this amendment to broaden how income tax revenue can be spent will in no way help those on the waiting list, Crippes said, unless legislators make it a priority.

He said that hasn’t happened since voters chose in 2020 to allow income tax revenue to go towards programs for disabled Utahns. And in the years since, Crippes said, lawmakers have funded school vouchers, which could go to private schools that aren’t 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.”

That doubt is shared by Janis Ferre, a familiar face in Utah’s Capitol who has advocated for people with disabilities for nearly four decades. Sometimes the waiting list has grown during her time working as an advocate, and other times it has dwindled — but the demand for disability services has consistently outpaced the money available.

She calls herself an idealist who is always optimistic that changes can come. But, Ferre said, “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.”

Helping disabled Utahns

Utah’s Division of Services for People with Disabilities pays contractors who help those with disabilities, with anything from hiring caregivers to assist burnt-out parents to providing supported living or job training.

“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.”

For some, those services can cost a couple thousand dollars a year, while others have higher needs that exceed $100,000 annually, according to DSPD. The average yearly cost per person is estimated at $76,100.

A third of DSPD’s budget comes from state funds, while the rest is a federal match from Medicaid.

The state office is currently providing services to more than 7,300 people. And Pinna said once someone starts receiving DSPD help, it will continue for the rest of their lives.

“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.

State Rep. Ray Ward, R-Bountiful, said that means when legislators consider budgeting, they must commit to permanent, ongoing funding. A one-time boost to DSPD’s budget won’t work.

“They need the help,” he said, “and you are agreeing to provide them those services forever when you bring them off the waiting list.”

Ward has advocated for more money for DSPD, and noted that in the last three years, a significant number of people were brought off the waiting list because legislators increased ongoing funding. But, he concedes, that pales in comparison to the need.

“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.

Rep. Jennifer Dailey-Provost, D-Salt Lake City, also has pushed for more support — including sponsoring a bill last session to take $400 million out of transportation, put it in an investment account and use part of the interest for the waiting list. It didn’t 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 it would take somewhere around $80 million to completely cover everyone who has been waiting, Dailey-Provost said, and there would probably be more who would be eligible but haven’t put their names on the list because they know they could be waiting 20 years or more.

“It’s horrifying. It makes me really, really frustrated,” she said, “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.”

Where someone ranks on Utah’s waiting list can fluctuate. DSPD uses a “needs assessment tool,” where caseworkers evaluate the urgency of someone’s need, the severity of their disability, a parental caregiver’s ability and the length of time they’ve spent waiting. Someone with a more urgent need or a change in support could rise quickly to the top of the list; others with less serious needs could be waiting for more than a decade.

Pinna noted that the state is able to help some people who are waiting using limited support waivers, which provides a smaller number of services for a limited time frame; there are currently 121 Utahns using this support.

Utah is not unique. According to a 2023 report by the Kaiser Family Foundation, a national organization that tracks health care policy, 38 states had a total of more than 700,000 residents waiting to receive disability services — nearly half of them in Texas, where 342,575 people are on the state’s waiting list, followed by South Carolina, with more than 41,000 people in the queue.

Utah ranked 16th in the nation on a per capita basis in terms of the number of residents awaiting services.

Families still waiting

For the Tribes, their need for outside support is intensifying as their family grows up. They’ve asked their older children not to get jobs, Allan said, so they have extra sets of hands with Harper and Faye. But their teens are 17 and 15 years old — and soon will leave the family home when they’re young adults.

“We have no options unless we get care by that point,” Miriam said. “We have to get care. Hopefully it will come through.”

And as Harper and Faye get bigger, it’s becoming more challenging for the parents. The girls wear diapers, need someone to shower them and need help when eating. Harper is getting stronger — and if she’s fighting, it’s hard for her parents to meet any of those daily needs on their own.

“I got kicked in the jaw and knocked off the bed today changing her diaper,” Allan said during an interview in September.

Sometimes, Miriam feels guilty about being on the waiting list, worried there are other families who have more need or families who speak languages other than English who may struggle with getting on the list at all.

She’s felt like they’ve had to “claw their way to the top,” of the waiting list, taking advice from another parent who told them to give officials a picture of their struggles.

Allan recounted that advice: “Anytime you’re going to cry in tears, call [the DSPD social worker] instead and cry to them.”

The Tribes said they’re frustrated that legislators have not allocated enough resources for DSPD to serve everyone who needs and 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 said. “It just feels like so much legislation is, ‘business first,’ and that’s where the money goes.”

Olivia Heiner has been on DSPD’s waiting list for 10 years. Her mother, Melissa Heiner, said that last time she checked, Olivia was about the 3,000th person in line.

The Heiners adopted Olivia when she was three months old, after her biological father abused her and caused a traumatic brain injury. Olivia is 18 now, Melissa said, but cognitively functions more like a 4- or 5-year-old. The mother said she’s hoping DSPD services will give them respite care, someone who can be with Olivia so she and her husband can spend time together.

“We never really get to go out or anything,” she 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.”

Olivia would also qualify to be covered by Medicaid, which Melissa said she needs because she’s no longer covered by their previous Medicaid coverage because she’s an adult. The parents have canceled some of her doctor appointments, Melissa said in tears, because Olivia isn’t insured right now.

Melissa fears that because only a few hundred or so people come off the waiting list every year, Olivia might not get DSPD support until she’s 40 years old. “It just feels really helpless,” she said.

‘We were in constant crisis mode’

When Sterling and Heidi Hilton adopted their daughter nearly 20 years ago, they knew 15-month-old Chetna was deaf and blind. They later learned she also had cerebral palsy, and would require much greater care than they had initially anticipated. She uses a wheelchair, is non-verbal and uses a gastrostomy tube.

They quickly put Chetna on DSPD’s waiting list. It took a family crisis two years later — when Heidi’s health quickly declined and she was hospitalized in a diabetic coma — for Chetna to get to the top of the list. Sterling was struggling to care for Chetna and his three other children then, scrambling to still make it to his job to teach his college courses.

“We just didn’t think, okay we’ll adopt this child and then fall apart,” Heidi said.

They’ve been receiving services from DSPD for the last 15 years. In those early days, Sterling said, the funding helped them hire someone who could care for Chetna so the parents had time to rest or run errands or do chores around the house. And critically, Sterling said, Chetna also qualified for a Medicaid waiver, which gave them secondary health insurance to pay for her care when she was younger and more medically fragile.

“It gave us enough breathing space that we could handle this chronic situation with a little bit more grace and some breathing space,” Sterling said. “We were in constant crisis mode.”

The Hiltons estimate they receive about $15,000 to $16,000 a year from DSPD now, which allows them to hire qualified caregivers for about 15 to 20 hours a week. The parents say they try to focus on ways they can enrich and enlarge Chetna’s life, such as asking a caretaker to take her to college classes, the community swimming pool or to the mall. (Chetna loves shopping, her mom said.)

All are trained, and understand the type of care Chetna needs daily, like changing her gastrostomy tube or helping her with stretching exercises.

This support, Heidi said, has changed their lives.

“It made me feel like I’ve been living through a dark night, and finally, the sun was rising,” she said. “I had hope. Where before, I had none. I wanted to be hopeful, but I just didn’t see a path.”