Hundreds of Oregon parents who care for their high-needs children may be closer than ever to getting paid by a Medicaid-funded state program.
State Sen. Deb Patterson, a Salem Democrat, is spearheading legislation that would increase the ability of parents caring for young kids with major medical or behavioral health needs to be reimbursed for their efforts, much as the state pays parents of adult children already.
Anna Kohl told lawmakers Tuesday that she gave up her income and her career to care for her daughter, Addie, much as any parent would in her place. Addie was born with Down syndrome and chronic liver disease, as well as heart and respiratory problems.
With only one income, her family drained their savings and nearly lost their Springfield home, she said, adding that families shouldn’t be subjected to “financial hardship solely because our children were born with higher needs.”
Five-year push
Officials have long used federal Medicaid funds to pay parents or guardians of high-needs children to provide care. But unlike in some other states, that benefit doesn’t start in Oregon until the children turn 18.
Since 2019, parents of high-needs minors have been pushing to change that. As the pandemic fostered a lack of caregivers and kept people home, state officials dropped their opposition to the idea and set up a temporary program to pay parents of 300 children with severe medical or behavioral needs. The program expired despite urging from the state Medicaid Advisory Committee to continue it.
“I’m doing the job that any other caregiver can get paid for.”
In 2023, parents went to the Legislature to authorize a pilot program. But they say barriers, such as capping the program at 155 children, prevent parents accessing it. It’s estimated that about 10 times that many children are eligible.
Disagreement about cost
The major obstacle to the bill is the state’s budget picture.
Department of Human Services officials do not formally oppose the bill. But they contend expanding access to the families of more than 1,000 additional children under Senate Bill 538 would cost almost $40 million a year.
That price tag could kill the bill. Some in Salem expect the budget picture to tighten, in part due to potential funding cuts under the Trump administration.
Supporters of the bill dispute the DHS estimate, noting the state already pays outside caregivers. Not only that, but in the current pilot program, parents have to work for outside agencies that charge the state much higher rates than caregivers are paid. Those agencies include Rever Grand, a firm charged with fraud by the Oregon Department of Justice. Critics say some companies play games to inflate billing.
The skeptics of state officials’ analysis include Patterson, a longtime health care administrator who chairs the Senate Health Care Committee.
“These are hours that have already been approved,” Patterson said. “This is money that is already being spent.”
The state argues that children with paid parent caregivers tend to receive more paid care, so the bill would boost costs. Parents say the reason for that is simple — there are too few of the specialized workers they need, so nobody is paid.
Patterson sides with the parents. “There are no case managers out there sprinkling extra hours on families,” she said.
Department spokesperson Elisa Willams told The Lund Report in an email that the program is paid through a different source of Medicaid funding.
“We’re saying, until you can fill that gap, let parents fill that gap."
Legislative fiscal analysts have not yet issued their estimated price tag for the bill.
Last year the federal government urged states to “strongly consider” paying parents and guardians to fulfill the obligation to provide services to children with disabilities. State Sen. Cedric Hayden, a Fall Creek Republican who cosponsors the bill, told The Lund Report that because of workforce shortages, the state isn’t meeting those obligations.
“We’re saying, until you can fill that gap, let parents fill that gap,” he said.
The department believes that allowing more parents to be paid providers for their children is a possible solution for workforce shortages, but the Legislature will have to fund it, according to Williams.
Parents coalition gains momentum
Last year a similar bill spearheaded by Hayden did not succeed. This year Patterson is championing the push. The parents also have a much broader coalition.
The coalition includes the influential Service Employees International Union 503, which previously supported the idea only as a temporary pandemic response. The union represents home care workers including parents of adult high-needs children.
Patterson, for her part, told The Lund Report she is cautiously optimistic and is determined to find a way for the bill to not impact the state budget.
“There has got to be a path forward,” she said.
Supporters pack hearing
On Tuesday, parents, kids in wheelchairs and other supporters of the bill wearing yellow T-shirts packed the committee room as well as an overflow area. Their shorts bore slogans saying “It’s Already in the Budget” and “Fulfill Your Promises.”
“These are hours that have already been approved. This is money that is already being spent.”
Supporters testified that they had cashed out their retirement savings or used food banks while caring for their disabled children full time. They argued they are best-suited to respond to their children’s needs, describing problems including inadequate care with paid caregivers.
Oriana Horneck told lawmakers that she used to be afraid of needles and blood. But she said her 9-year-old son, Avery, has a rare genetic disorder and epileptic encephalopathy. His medical needs have become more complex every year, requiring specific and time-intensive treatments, she said.
She said she has become an expert after nine years of managing seizures, medications, respiratory therapies, feeding tube replacements and other tasks.
“I’m doing the job that any other caregiver can get paid for,” she said. “The only reason I cannot be paid for the work I’m doing for Avery is because I'm his mother.”
