The bipartisan bill, supported by families of children with intensive medical needs, has a lower projected cost than in previous years

By Kaylee Tornay, InvestigateWest

Reporter Kaylee Tornay covers labor, youth and health care issues. Reach her at 503-877-4108, kaylee@invw.org or on X @ka_tornay.

SALEM, OR – A bill to make Medicaid pay available to parents for providing certain care to their minor children with severe disabilities cleared its first major hurdle in the Oregon Legislature on March 13, passing out of the Senate Health Care Committee with unanimous support.

It was an encouraging step forward for families and lawmakers leading the push to pass Senate Bill 538, or “Tensy’s Law,” named after 10-year-old Tennyson Ross from Sherwood.

“We are excited,” said Calli Ross, Tensy’s mother, who spoke with InvestigateWest in 2024 about the caregiver shortage she and hundreds of other families face around the state. Her son is medically fragile and requires a ventilator to breathe, a feeding tube for nutrition, and constant monitoring for his breathing and seizures. “I’m hoping that we’ll be able to push this through.”

Ross and a cadre of other family advocates have pushed for parent pay in the last two legislative sessions. They scored a partial victory along the way: A 2023 law created the Children’s Extraordinary Needs waiver, which enabled some parents of kids with intensive medical and behavioral health needs to become paid caregivers for up to 20 hours a week. That program, which launched last summer, is capped at 155 children, leaving more than 1,300 others who meet eligibility criteria on a waitlist. Many of these families struggle to find enough qualified professionals for everything from physical and respiratory therapy to nursing and psychiatric care. Amid this “mirage of services,” as families often call it, parents fill the gap — often leaving jobs and relying on public assistance programs to do so.

Now, Tensy’s Law heads to a familiar and daunting stage: the Joint Committee on Ways and Means, where lawmakers will determine whether to slot the costs of the program into the new budget and pass the bill along to the full Senate. Advocates say their first push will be to get the bill a hearing, and after that, to convince lawmakers that the associated cost is both lower than previously forecast and a viable way to fulfill a promise made to their children to cover the care required to meet their needs. Oregon has failed to uphold that promise, they say, thanks to the in-home care provider shortage and the prohibition on parent pay.

“I really think the morally right thing to do is to help families access hours that their kids are already eligible for,” said Sen. Deb Patterson, D-Salem, one of the chief sponsors of Senate Bill 538. “These kids really need the care, and the parents really need the assistance.”

The Ways and Means committee is where the last version of Tensy’s Law died in 2024, having never received a hearing. Efforts in 2023 resulted in the Children’s Extraordinary Needs waiver — a $3.9 million-a-year compromise struck in large part due to Republican bargaining to end a 10-week walkout in the Senate. Advocates say Republican leaders have been supportive of their efforts over the years, often because the rural areas they represent face some of the most acute shortages of caregivers. This year, they hope to receive similar priority from Democratic leadership, Ross said.

Clarifying the question of cost is a key to that strategy, as that is where the strongest objections lie. In 2023, the state Department of Human Services, which assesses children with disabilities to determine the amount of care they qualify for, projected it would cost $87 million a year to offer pay to all parents of qualifying high-needs children.

Today, that cost estimate is much lower: about $20.5 million a year for the next two years, increasing to around $35 million a year in the following two years. One limiting factor is an amendment that caps parent pay at 40 hours a week. This year’s cost analysis also reflects an expectation that not all families will participate, based on data from the Children’s Extraordinary Needs program. The Human Services Department also expects to need fewer additional staff than forecast in 2023.

Overall, the fiscal analysis for the bill is more nuanced than in 2023, said Shasta Kearns Moore, a parent advocate who has kept in close contact with the Oregon Department of Human Services as it worked to produce the estimate. She said additional context could make the cost even lower.

“My takeaway from the fiscal (analysis) is that, for a $20 million investment, you can stabilize over 1,500 families, provide the support that Oregon has promised to these kids for over a decade, and lower medical costs,” Kearns Moore said. “Because we know hospitalization rates go up when they have third-party caregivers.”

Data from Colorado, where parents are eligible to become trained and paid certified nursing assistants, showed that hospitalization was six times lower among children who were cared for by their own parents. Oregon also has anecdotal data to support this: During the pandemic, the state followed federal guidelines and paid parents for caregiving to reduce the risk of COVID infection. Families surveyed by advocates in 2024 indicated that their children needed to be hospitalized less frequently when parents were paid for their caregiving labor.

The debate over whether to make young children’s parents eligible for pay through Medicaid is marked by incongruencies. While parents of minor children can’t be paid, other relatives such as grandparents can be, as are support workers unrelated to the families they serve. And after their disabled child turns 18, an Oregon parent is allowed to be paid, though nothing about the care they provide has changed.

And as a counterpoint to the projections of increased costs from the state having to pay out more of the care hours already promised to children, Kearns Moore and others say that paying parents can save the state money in other ways. Pay will help some families come off public assistance such as food stamps and housing vouchers. It can also reduce expensive hospitalizations and emergency care.

“It’s already in the budget,” was a frequent refrain from children and their parents who crowded into Tensy’s Law’s first hearing on Feb. 4. Amid the beeps from feeding pumps and the hiss of respirators, parents shared how they struggled to make ends meet amid the shortage of care professionals. Children testified about the difference it makes for them to be cared for by their parents. Many wore yellow shirts with slogans such as “My parent knows me BEST.”

“Parents should take care of the kids because the parents would know how to take care of their kid more than a stranger,” said Skyler Reinhardt, a 10-year-old who said she has been able to designate her father as a paid caregiver through the 2023 waiver program. “All kids should have their parents. It’s not fair.”

Calli Ross, who took the microphone with Kearns Moore and Tensy by her side, shared how her family copes: Five evenings a week, she and another mother swap houses to care for each other’s children throughout the night. For those 11 hours, both of them are paid — because the child they’re caring for isn’t their own.

Sen. Cedric Hayden, R-Fall Creek, co-sponsored the bill with Patterson and two other lawmakers. He criticized the state’s performance in upholding its guarantee to provide children access to their entitled care.

“Basically the state is saying, ‘Well, it will cost us more because we’re not doing our job,’” Hayden said during the Feb. 4 hearing. “They’re saying that it would increase the cost because the utilization of the authorized hours would increase. That’s what we want.”

Tensy’s Law supporters hope that bipartisan support for their proposal will add momentum to their efforts this year. For now, they are pushing for the bill to be heard in the Ways and Means subcommittee on human services, which will decide whether to move it on to the full budget committee.

“Our greatest fear is that it’s going to die in Ways and Means,” Calli Ross said. “Right now, it just needs to be scheduled for their committee and that will make us all feel a lot better.”

Families are preparing to meet with Democratic leadership in both chambers in the coming weeks to make the case for prioritizing Tensy’s Law in the budget. That includes House Speaker Julie Fahey, Senate President Rob Wagner, and Sen. Kate Lieber and Rep. Tawna Sanchez, who co-chair the Ways and Means committee.

In 2023, Sanchez was the committee’s sole dissenting vote against the bill that created the Children’s Extraordinary Needs waiver. At the time, she said she was concerned about ballooning costs if pay was expanded to more families.

“I am concerned about taking this process forward into a time when we’re not in a pandemic, where we’re working very hard as a Legislature to pull together and bring new people into the field to do this very important work. And it feels like something that could potentially, long-term, become very, very expensive,” Sanchez said in 2023. She did not respond to a request for comment.

Armed with the new fiscal analysis and data from other states, family advocates say they are ready to return to the Capitol in their yellow T-shirts, calling for action just as they did last month, and the last two legislative sessions before that.

“The solution is so clear,” said Tobi Rates, executive director of the Autism Society of Oregon, testifying in the February hearing. “If the state will pay anyone but a parent to care for our children, and if the state will pay parents of adult children, why aren’t we willing to pay parents of minor children? If it’s because parents should care for their children, we do and we will, but we need help. And that help is already in the budget.”

This story was originally published by InvestigateWest, a nonprofit newsroom dedicated to change-making investigative journalism. Sign up for their Watchdog Weekly newsletter to receive stories like this one in your inbox.