Parents of severely disabled children say Oregon should expand paid parent care program

SALEM, Ore. (KATU) — Parents of severely disabled children say they are desperate for state leaders to expand a new program that pays parents to provide certain care to their children.

A KATU investigation found other states have done just that.

Some Oregon parents have disabled children who qualify for hundreds of hours, per month, of state-funded, in-home care, but they told KATU it’s hard to find professionals to provide that care due to workforce shortages.

The federal government started allowing parents to get paid during the pandemic, in part to address that shortage.

Jordyn Skaats 7-year-old son, Thorin, was born at 25 weeks. Despite the health complications that came from that, Jordyn said Thorin is like a normal kid in so many ways.

“He’s a happy little guy. He’s really fun to be around,” Jordyn said. “He’ll still point to things and tell us in his own way when he’s happy and excited.”

Oregon – like many other states – took steps to help families, like Jordyn’s. It got approval from the Centers for Medicaid and Medicaid Services to expand a pandemic-era program that paid parents to provide certain in-home care.

Jordyn said the prospect of getting paid sounded promising.

“I got really excited, because I thought maybe I’d have some relief and feel like, I felt a little bit of hope,” Jordyn said.

Jordyn said it’s been years since she could find a provider to cover most, if any, of the hundreds of hours of care Thorin qualifies for based off his state assessment. She can’t work due to his healthcare needs.

The permanent program – called the Children’s Extraordinary Needs program – allows parents to be paid up to 20 hours per week and is only offered to children with the highest needs as determined by a state assessment.

The state said 1,557 children met those criteria. However, the state’s budget only pays 155 families at one time, while the rest – roughly 90% – are on a waitlist.

Thorin is number 1,249 on the waitlist.

“What did you think when you read that [letter],” KATU asked Jordyn.

“I was really sad. I’m sorry. I felt like I lost hope,” Jordyn said through tears.

RELATED |Oregon mother on new state program waitlist worries daughter may be forced into group home

Jordyn reached out to KATU Investigates after seeing Amara’s story. Jodie Gibbs’ 15-year-old daughter has severe intellectual disability and autism and is also on the waitlist. Both parents worry prolonged time without in-home care or the ability to get paid for giving their children care will result in their children being forced into a group home.

“It makes total sense to pay parents the 20 hours per week and for the state not to pay for the total expense of a group home or foster care placements which by the way we know those systems are broken anyway,” Jodie Gibbs said.

The state agency in charge of the program told KATU that 209 of the 1,557 children currently live in community-based 24-hour residential homes and foster homes, roughly 13% of the eligible children. Advocates for paying parents say it’s cheaper to pay parents. They want the state to expand the program and pay every family that qualifies.

Corvallis-area state senator Sara Gelser Blouin worked on the legislation that created the program.

“It would have been prohibitively expensive to just bring everybody in; that’s why there was a cap, a dollar amount cap, that was put on it,” Gelser Blouin said.

The democratic lawmaker said the state will review the costs next year. It’s possible the state will expand the program to more than 155 families at a time. It currently has roughly $7.7 million in combined state and federal funds for this fiscal year.

A spokesperson with the state’s Office of Developmental Disabilities Services told KATU that 103 parents in the initial 155 who got selected chose to participate in the program. The state anticipated the rest, 52 spots, will go to families on the waitlist. it will review the costs for those families by sometime next year to determine if it can expand.

Gelser Blouin told KATU she was optimistic that would happen.

“We’ve heard from some parents who said the money really would be a lifeline, a financial lifeline for them,” KATU asked Corvallis-are State Senator Sara Gelser Blouin.

“I don’t dispute that. The challenge is that the way that this program is set up, it is an attendant care program for children with disabilities, so the only purpose for the program can be to deliver attendant care services to children. It cannot be used, and we cannot make policy choices, as an income replacement or a social safety net,” Gelser Blouin said.

Advocates for these parents say the state is obligated to pay for the child’s care and should pay for it — either to a parent or a care provider.

In other words, if a child is eligible to receive 300 hours of in-home care per month based on the state’s assessment, but a family or agency can’t find a provider to cover those hours, advocates argue the state should pay the parent for at least 20 hours of the care per week if it’s under the child’s allocated hours, regardless of the state’s budget for this program.If the parent could find an outside provider for the work, Medicaid would cover it.

State Senator Deb Patterson is working on legislation to pay every qualified parent who opts in. Jordyn said getting more parents in the program would save taxpayers money in the long run.

“I could get off food stamps and be able to get off certain assistances if I had the help, and also, hospitalizations would be lower, because when there were nurses or caregivers with my son, they didn’t know him as well as I do or triggers, and it led to more hospitalizations which costed more money as well,” Jordyn said.

For now, the program will stay as-is, but a KATU investigation found other states can pay more parents.

The website for Arizona’s new program says eligible parents will be able to bill up to 40 hours of care per week when the permanent program starts. There is no mention of a waitlist. An Arizona mom and advocate told KATU there is an interim program paying thousands of parents until the permanent program launches.

Meanwhile, in Minnesota, the state’s website says its program launches in October. The only hour cap mentioned is that parents cannot bill more than 310 hours per month for personal care services – the same restriction placed on out-of-family providers.

In every case, parents cannot bill beyond the number of hours the state says a child qualifies for.

Parents of disabled children said the state owes it to these children to cover the care they need.

“My son deserves to live just like everybody else does,” Jordyn said. “[He] deserves to live happily just like everybody else does.”