Estimated read time: 9-10 minutes
SALT LAKE CITY — In the last 18 years, Jason Poole and his wife have only been able to be away from their two disabled children overnight two times — with both he and his wife working around the clock with constant attention and care to their kids.
"For the first 14 years of our marriage, we never were alone from our kids," Poole said. "We needed to be there constantly, and you effectively, in a lot of ways, you give up your life."
When Poole's son received a diagnosis of severe autism, Poole said that a doctor took him and his wife to meet with a social worker, where they were advised to work out a plan to stay married, despite the difficulties that may come with caregiving.
Many caregivers have reported struggling in their marriages, with over 80% of caregiving parents reporting strain on their relationships, according to a report from the U.S. Health News.
"We just always decided that divorce isn't an option because neither one of us can handle it by ourselves," Poole said.
Poole added that despite his and his wife's strong relationship, it can be lonely when just the two of them do most of the caregiving for their children.
"We have to have somebody with him all the time. And one of the big challenges with that is with the shortage of labor and what the state is paying, and then it's just very difficult, if not, in some cases, impossible to find anybody to come in and help take care of your kids," Poole said.
To best support their families and marriages, many, including Poole, apply for assistance from the Division of Services for People with Disabilities, with services ranging from respite care to caregiver compensation to activities for disabled family members.
"Where we're at today is a silent, unseen tragedy," Poole said, adding that he and his wife have struggled to feel included in their neighborhood due to their time dedicated as caregivers.
And the Farmington resident and his family aren't the only ones struggling.
In Utah, 1 in 4 adult women and 1 in 6 adult men are caregivers — with 436,000 total reported caregivers in 2020, according to a 2022 report from the Utah Commission on Aging, Utah's official statewide virtual resource center for older adults.
Caregivers assist parents, children, their spouses or other relatives, the report added, although the highest percentage of caregivers (28.7%) help their parents.
Almost 42 million adult caregivers are unpaid, according to the Utah Commission on Aging. Many caregivers report a decline in physical and mental health, financial stability and job security — as well as an increase in feelings of social isolation, the commission's report said.
"Right now, the services are providing some time for them to go to a day camp for the summer. … Which is huge for the kids, but also gives us a little bit of a break during the day from having to be with them all the time and things like that," Poole said. "And there's a lot of families out there that without this, they may not be able to keep their kids, because they just would have no way to provide for them."
Lisa Thornton, an advocate for Utah caregiver compensation and mother of a child with a severe disability (Prader-Willi syndrome), noted the importance of receiving services from the Division of Services for People with Disabilities.
"There's a lot of things that DSPD can help them with, providing some respite care, providing some behavioral interventions, just giving some hope to the family that they can survive," Thornton said.
But not every family is as lucky to receive services from the division, according to Rep. Ray Ward, R-Bountiful. Over 4,600 families remain on the waitlist to receive any kind of respite or compensation, Ward said, with some waiting over 20 years to finally get services. However, numbers are always fluctuating due to those being admitted to services, added the Utah Parent Center, an organization dedicated to helping those with disabled family members.
"It's very frustrating for people. They never know when or if they're going to get services," Ward said, adding that when tragedy strikes for some families (such as having a caregiver die), that family moves to the top of the list and bumps other families further down.
Waiting for relief
This past legislative session, Ward committed to expanding the Division of Services for People with Disabilities by sponsoring HB242: Services for People with Disabilities Amendments.
After the bill was drafted, it received unanimous votes in both chambers. According to Ward, it "would have gotten support from the budget" to fund the division's services enough to help remove people from the waitlist.
"The bill would have taken 200 more off the waitlist permanently," Ward said, adding that with each passing year, if there was enough in the budget, the state could expand the Division of Services for People with Disabilities' finances to the point where hundreds more could receive services annually.
But despite the bill receiving unanimous votes — with the legislative body supporting the initiative — the Executive Appropriations Committee did not ultimately approve the bill to receive funding from the state budget, thus taking away the chance for the division to receive more funding, according to Ward.
"Obviously, we just proved that it doesn't matter how many votes we get to support just the bill unless there is also a commitment to pay the money to bring the people into services," Ward said.
Lisa Thornton, a parent of a severely disabled daughter, added that the thousands on the Division of Services for People with Disabilities waiting list often suffer financially either from taking care of their child all day and being unable to work, or from additional medical bills.
"We have families that are just crumbling financially because they — you know, at least one parent has to stay home, and often it's a single-parent home, and then what do they do?" Thornton said.
In the long run, Poole added, waiting to fund services could force some families to have to put their children into state facilities, or could ultimately cost the state more money than originally funding the division.
"You end up with kids being taken away from very loving families, parents that love their children, but there's just no help for them to be able to do that. Then they're putting them into a state system where nobody is there to love the child; they're just simply taking care of their basic needs, things like that, and it costs the state so much more money than if they were to just expand out the caregiver compensation," Poole said.
Dailey-Provost agreed, noting that, "The longer we can go down the road, the more expensive and the more devastating the human toll is — and we just have to do better."
Despite the struggles with the Division of Services for People with Disabilities waitlist, the Utah Legislature both voted for and funded efforts to give greater compensation to caregivers.
Compensating caregivers
With SB106: Caregiver Compensation Amendments, the Legislature allocated more funds toward assisting unpaid caregivers, directing the Department of Health and Human Services to provide benefits through a preapproved waiver to the state's Medicaid plan, according to Dailey-Provost, the floor sponsor of the bill, which passed in the session and was signed by Gov. Spencer Cox.
"Once it (the bill) was passed, it becomes — it automatically kicks in as part of the state plan," said Dailey-Provost. "This is a good investment. This is not a giveaway by any measure. This is an investment — this is the state investing in its workforce, and this is the state being partners with parents and spouses in providing critical care."
Originally, unpaid caregivers received compensation (if they chose to receive it) during the pandemic, but a few years later as the pandemic died down, Thornton said, it was harder for them to receive payments to stay at home and care for their child.
Thornton was committed to changing that, she said. Inspired by some of the struggles with her own disabled daughter, as well as the hundreds of other caregivers who sought compensation, she partnered with the Legislative Coalition for People with Disabilities, the Utah Parent Center, and the Utah Developmental Disability Council to push for SB106's success.
"That's one of the reasons why it was successful was because we all came together," Thornton said. "We've worked really hard to get everyone together and make a big push to help this happen. I mean, I have hundreds of families that I talked to … and I could see what a difference this would make."
If they meet specific qualifications — parents or guardians who provide "extraordinary care" for those they assist, according to the bill — caregivers can receive an hourly wage for their work, according to Dailey-Provost.
"There is literally not a single person in the state who is getting rich off of this compensation," Dailey-Provost said. "But it is allowing them to stay in their home, pay the mortgage, pay the bills, put food on the table so that they don't — so that people don't have to then depend on the state to pay for a home for their children."
Any parent or guardian who meets the necessary qualifications can apply for compensation, even those on the Division of Services for People with Disabilities' waiting list, Dailey-Provost said.
The Utah Parent Center noted in a statement it "see(s) caregiver compensation as a tremendous resource for those families who have access to it."
"With caregiver compensation in place, caregivers are filling a gap due to the lack of service providers and the employee shortage. We have seen caregiver compensation be a great benefit to families," the Utah Parent Center's statement added. "In some cases, the compensation parents have received for their caregiving work has helped to make them less dependent on other public resources and funding."
Poole noted how the compensation has helped him and his family continue to remain financially stable.
"By having the caregiver compensation for us, it allows us to be able to provide our children with things that they otherwise — that we would not be able to afford to help them," Poole said.
Best ways the public can care for caregivers
While the Legislature has provided several efforts to assist families, Ward encouraged the public to push for further efforts to fund the Division of Services for People with Disabilities, especially in the coming sessions.
"You could call your legislator and tell him that we need to better support our families who have these disabled individuals," Ward said. "You can see from the vote that every legislator up there knows that this program is needed and knows it is important, all of them. No one disagrees with that. But there needs to be a budget commitment to help take care of them — or else it won't change."
Another effort to best support caregivers, Poole added, would be for the public to have a more inclusive attitude toward caregivers and their children or parents.
"Just don't be afraid to say hi to somebody that's got a child with special needs," Poole said. "Let the other people know they exist."
