Opinion: Legislature must follow through on promised home care for kids with disabilities

Shasta Kearns Moore

For The Oregonian/OregonLive

Kearns Moore is a leader in Advocates for Disability Supports, an Oregon grassroots group of parents.

It’s time for the Legislature to put its money where its mouth is — and pass Senate Bill 538.

Known as “Tensy’s Law,” SB 538 would allow the state’s highest needs children to actually receive the paid home care that the state is legally obligated to provide. It would do so by making a commonsense change to hire the only caregivers who work morning and night, snow days and sick days: the children’s parents.

Under Oregon law, the state is supposed to assess children with intellectual and developmental disabilities, determine how many more hours per month of medical and behavioral health care they require than a typically developing child and then pay for a worker to provide that care. The idea behind funding home care support with Medicaid dollars was to address disabled children’s unique needs, set them on a more independent trajectory and prevent families from having to put their children in expensive out-of-home facilities.

But for years, Oregon has fallen short of this obligation. Instead, the state’s inability to provide qualified workers has resulted in psychological anguish, impoverished and broken families, and poor health outcomes for the child and their unpaid caregivers.

Oregon has promised these services in state law many times over: through its Medicaid plan, Early Periodic Screening, Diagnostic and Testing requirements for children and Measure 111, which enshrined health care access in our constitution. Families have to fill out extensive bureaucratic paperwork, endure months-long approval processes and annual reassessments to qualify.

Unfortunately, more than a third of disabled children’s hours go unfilled. We know from surveys of our community that that is not for lack of trying, nor for lack of need. It is clear that without the option to authorize and employ parents as direct support professionals or personal support workers, these home care hours are an empty promise of support. Families are being left to shoulder overwhelming responsibilities alone — resulting in financial and housing instability, poor health outcomes and worse.

Oregon already pays parents of disabled adults who need this support. And it will pay practically any other adult besides the parent to do this labor for our children. Indeed, except for the 155 families in the tiny Medicaid waiver set up by the 2023 Legislature, the only people disqualified are convicted felons and the child’s legal guardians.SB 538 would allow this option for all 1,600 of the state’s very highest needs children — those who require round-the-clock care.

Since 2019, our plucky group of parents — Advocates for Disability Supports — has built a statewide grassroots movement that year after year presses legislators to confront this fixable inequity. Members testified at every stop of the Joint Ways and Means Committee’s 2025 budget road show to highlight the need for state investment. We have earned endorsements from the state’s major political players like SEIU Local 503, Oregon AFSCME, the System of Care Advisory Council, Oregon’s chapter of the National Alliance on Mental Illness, Prevent Child Abuse Oregon, the Oregon Nurses Association, the Oregon Pediatric Society and many more. We have fit this volunteerism in around not only our own unpaid caregiving labor but emergency room visits, sleepless nights and numerous battles with our school, health care and social services systems.

There is no known opposition to this bill. The outcomes align precisely with the fiscal priorities stated by the governor and the budget co-chairs – stabilize families in their homes, invest in our children and shore up our health care system. Similar allowances in other states have been declared by their fiscal offices to be budget neutral or, most recently in Oklahoma, to actually save the state money.

And yet, we are unsure if this bill will even be scheduled for a hearing in Joint Ways and Means, or simply die in committee.

Our children deserve better. They deserve the care they are legally entitled to — and they deserve the caregivers who know them best: their parents. If Oregon fails this time to put its money where its mouth is — to abide by its own guarantees and promises — we will simply follow the lead of parents in Ohio, Indiana and Illinois and sue.