'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.'
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.
"We just always decided that divorce isn't an option because neither one of us can handle it by ourselves," Poole said. "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.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.
Lisa Thornton, an advocate for Utah caregiver compensation and mother of a child with a severe disability , noted the importance of receiving services from the Division of Services for People with Disabilities. "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.
"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. 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.
"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." The Utah Parent Center noted in a statement it "see caregiver compensation as a tremendous resource for those families who have access to it."
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