New Oregon program pays parents to care for kids with intensive medical, behavioral needs — but few can access it

Calli Ross’s son Tennyson was assigned a number this summer. It’s 136.

So was Paige Hall’s son James. He’s 156.

And Shasta Kearns Moore’s son Malachi is 1,151.

The numbers, which top out at 1,349, mark the spot that each boy occupies on the waitlist to qualify for a new Medicaid program in Oregon: the Children’s Extraordinary Needs waiver, which allows parents to be paid for up to 20 hours of care per week that they provide for their children with severe disabilities. Just 155 families at a time can participate, though 10 times as many qualify.

That means hundreds of families face a potentially yearslong wait to see if their child’s name will come up. In the meantime, those parents face a difficult but familiar choice: to keep seeking outside help that the state will pay for, which is in short supply and not always suited to their children’s needs, or to provide the care themselves, unpaid.

The Children’s Extraordinary Needs program, which kicked off July 1, represents a historic step forward to the parents who have pushed for this compensation. But the rollout thus far has also exposed major limitations, parents say.

The design of the program pays for only a fraction of the hours that many parents spend caring for their children, and a fraction of the hours that the state has agreed their children are legally entitled to. Others worry the income from the waiver would be enough to kick them off programs they rely on for food and housing assistance, but would not make up the difference if they lost those benefits. A third of the families selected in the original lottery have decided not to participate, according to the Oregon Department of Human Services, and advocates say these limitations are often why.

“It really keeps families in poverty, and we’re afraid that it’s almost set up like that to fail,” Ross said. “You have a bunch of people saying, ‘We can’t actually afford to be part of this program,’ but they’re terrified not to be a part, because if they don’t, they get put to the end of the waitlist.”

These parents aren’t new to supplying this care, which extends well beyond the typical demands of child-rearing. Ross, Hall, Kearns Moore and many others whose children qualify for the program have already logged thousands of hours standing in as respiratory therapists, occupational therapists, night nurses and mental health clinicians. They maintain the tracheostomies and ventilators that help their children breathe, manage at-home physical therapies and administer the medications that keep their children’s seizures at bay, help regulate their moods and ensure they can sleep. Many have sacrificed their careers and stay up throughout the night because they can’t find enough qualified professionals to provide these services.

The concept of paying parents to do this type of work also isn’t new. Parents become eligible for state pay once their children turn 18. And during the pandemic, the state began allowing parents of minor children to be paid for caregiving, with no limits on the hours, in order to minimize the risk of infection spread from outside workers entering their homes. It was widely popular, according to parents’ testimonies before the Oregon Legislature in 2023.

But the Children’s Extraordinary Needs program is limited by a $7.7 million annual budget. Parents and a few lawmakers will try to change that in the upcoming legislative session. “Tensy’s Law,” named after Ross’ son, would expand the paid parent benefit to all eligible children. It does not yet have a cost estimate.

“If the children and the families need these services, we need to help them access the care that they need,” said state Sen. Deb Patterson, D-Salem, who is cosponsoring the legislation. “This is not just watching your kids and making sure they’re fed and get to school on time. This is the work of providing medical and educational support for hours and hours on end forever. It’s not like typical parenting in any way, shape or form.”

A thin lifeline

As a single parent, Paige Hall has primary custody of her son James, 12, who has drug-resistant epilepsy and nonverbal autism. She spends hours each day keeping him healthy and safe.

As is the case for many families whose children experience disabilities, that work is varied and complex. Paige works with him on self-regulation, using an adaptive communication device and training with his service dog. Sometimes, they’ve had support from outside certified workers that James was comfortable with. But many other workers have not shown up when they’re scheduled or haven’t been a good fit for James. Paige is the one who knows him best and is best equipped to care for him, she said.

She was laid off from her part-time job during the pandemic. Since then, she’s worked mostly odd jobs, including as a paid part-time caregiver for another child with disabilities. James’ Social Security benefits and food stamps help ensure they have a roof over their head and enough to eat.

Being paid for his care during the pandemic took a huge weight off her mind, she said.

“That was life-altering,” she said. “For the first time in my child’s life, I wasn’t just completely stressed out about if his needs were being met, if he was being taken care of appropriately, if I could afford to feed him or myself.”

James was healthier, too, she said. While he had previously been hospitalized at least once a month, during the two years his mother was paid for caring for him, he had only one unscheduled hospitalization, she said.

“I didn’t realize how bad it was until I got put into a place where we felt secure and we felt safe and where we could really evaluate what was working and what wasn’t working,” she said. “That should always be the bare minimum.”

In an ironic twist, however, Paige is unsure whether she would participate in the Children’s Extraordinary Needs program if given the option.

That’s because she has estimated that the money would raise their income enough to make them ineligible for food stamps. But 20 hours a week at $20-$22 an hour wouldn’t be enough to replace what food assistance provides for them.

Paige said the 20-hour cap feels like “a slap in the face.”

“That’s not replacing the full-time job that people are giving up” to care for their children, she said.

Waiting and watching

With 53 families turning down the new waiver so far, the waitlist has already moved forward, said Tom Mayhall Rastrelli, communications officer for the Oregon Department of Human Services.

But for Kearns Moore’s son Malachi, who is 14, the wait could still be years.

Kearns Moore said she had braced herself for her son to be waitlisted. But seeing that he was behind at least 1,000 other children was still a “gut punch,” she said.

“I had written off that my family would ever benefit,” she said. “But seeing it in black and white that my child is never going to get a spot without the program expanding, my heart sank.”

In an email, Mayhall Rastrelli said the department has heard from many families frustrated with the long wait and with challenges in finding services for their children.

In the meantime, officials within the state disability services office say they are collecting data throughout the next year to help lawmakers track participation and costs associated with the program. That includes a survey of the families who turn down the benefit.

Advocates for Disability Supports, a parent advocacy group that Kearns Moore and Ross help lead, is collecting data of its own. A survey of about 7% of eligible families found that some expected positive outcomes from participating: more than half said they could leave public assistance programs with the pay they’d receive from the program. The survey also found 91% of families were either unable to find enough professionals to provide for all the hours their children were allocated, or were choosing not to fill those hours with outside workers, choosing unpaid caregivers, such as parents, instead.

“We’re promising families support that isn’t real,” Kearns Moore said. “We’re saying, ‘Your child deserves this many hours of support,’ and looking the other way on the fact there is nobody to fill those hours.”

Hopes for the future

When Senate Bill 91 was signed into law, Ross was hopeful that it was a step in the right direction.

But then came the limited funding from the state. And then came the design that the Department of Human Services created, which sought to reach more families by capping the available hours per week.

Now, a year and a half later, Ross is gearing up for another push in the Legislature to accomplish what advocates had hoped the 2023 law was going to accomplish. This summer, advocates decided to name the law after her 9-year-old son.

“All we’re asking with Tensy’s Law, at the very heart of it, is to do what they said they were going to do,” she said. “Have these highest-need children have the ability to pick their parent as their caregiver. Enforce a law that you’ve already passed.”

Ross and other advocates pushed for a bill with similar intent as Tensy’s Law this past legislative session. It died in the appropriations committee.

The question of cost is at the center of the debate. Opponents say the state can’t afford to cover all the hours of care that parents are providing.

The fiscal analysis for the 2024 bill that sought to make pay available to all parent caregivers of high-needs children projected the cost to be around $174 million from 2025-2027, 57% of which would come from federal matching funds. Additional personnel to support that at the Oregon Department of Human Services would cost another $3.5 million, according to the estimate.

However, advocates point out that the hours the state is talking about paying for were already promised to their children. But the Legislature budgets for the services their children need based on the hours that are used, not what they are owed, which sets the system up to be underfunded and to depend on unpaid parent labor, they said.

Sen. Cedric Hayden, R-Fall Creek, echoed this opinion during the 2024 legislative session.

“We’re not saying it wouldn’t cost more, but the state has signed up through their waiver to this obligation and they’re, in my opinion, not meeting their obligation,” he said in a Feb. 24 meeting of the Senate Health Care Committee.

Meanwhile, the state is continuing to invest in workforce development and retention initiatives to make services more accessible to families. This includes $47 million worth of COVID-19 relief funds that went to the Oregon Department of Human Services. That money was funneled into programs focusing on increasing the rural workforce, grants for incentive payments to attract workers, paying for completing specialized training, and “targeted marketing to attract workers,” Mayhall Rastrelli said.

Ross said it doesn’t have to be so complicated.

“We’re sitting here like, ‘Just pay parents,’” she said. “We’re the workforce.”

InvestigateWest (invw.org) is an independent news nonprofit dedicated to investigative journalism in the Pacific Northwest. Reporter Kaylee Tornay covers labor, youth and health care issues. Reach her at 503-877-4108 or kaylee@invw.org . On X @ka_tornay.