Six-year-old Charlee Eklund has severe disabilities. She needs her airway cleared daily and uses a feeding tube. Nonverbal, she also uses a wheelchair.

She used to be hospitalized at least twice a year with medical complications, but that stopped two years ago when her mother, Lenore Eklund, was hired by the state to be her caregiver.

“I also brought a level of experience and qualification that can only be found in a parent of a child with disabilities,” Eklund said during a recent state Senate hearing. “I was able to maintain a stable and reliable routine for Charlee. Because of the extent of time I am with Charlee, I am more in tune with changes in mood, energy level and quality of sleep, all of which could indicate something serious when there is a change from baseline.”

Eklund is among dozens of parents of children with disabilities who’ve been pushing the Legislature for two years to pass a bill allowing them to be permanently paid as caregivers through Medicaid. Before the pandemic, a federal ban prevented the state from paying parent caregivers over concerns of a conflict of interest. But two years ago, as the shortage of caregivers worsened as the pandemic dragged on, Oregon obtained a temporary waiver from the federal ban. 

A proposal that would have made the temporary waiver permanent died in the Legislature last year. This session, two proposals are being considered by the Senate Human Services Committee. Senate Bill 91 was crafted by the committee’s chair, Sen. Sara Gelser Blouin, D-Corvallis, and Senate Bill 646 was proposed by the Senate Minority Leader Tim Knopp, R-Bend.

A majority of those testifying or submitting testimony prefer Knopp’s bill. It would allow the state to pay parents as in-home caregivers for children with disabilities. It has no cap on hours or limit on the number of children served. About 10,000 children would be eligible to hire a parent if SB 646 were to pass, according to the Oregon Department of Human Services. That compares with about 1,000 under SB 91, the agency said.

Currently 440 children with disabilities have paid parent caregivers. They provide a wide variety of services, including help with dressing, eating and bathing to moving and activities of daily life. 

To qualify for services under the temporary waiver, the children have to have an intellectual or developmental disability and the family must qualify for Medicaid, which allows gross earnings of not more than 138% of the federal poverty level, or a maximum of $18,075 a year for an individual and $36,908 a year for a family of four. 

“I think it’s really important that we make progress on this issue,” Knopp said during the recent Senate hearing, acknowledging that it can take a few sessions to find a solution to a problem. “I want to work with all of you to try to find the best solution for parents and these kids for this session because their care is so important.”

He said anecdotes indicate the children fared better when their parents were in charge. Parents who testified said paid caregivers were in short supply and those available often had questionable skills and work ethics.

Gabriel Triplett, a parent advocate and father of a 10-year-old-son with disabilities, testified about one caregiver who passed out from a drug overdose while on the job. The child “was found hours later after almost being hit by a car on a highway and getting cut from barbed wire and electrocuted from an electric fence,” Triplett said. “Unfortunately, these stories are not rare in the current situation: They are common and predictable.”

“Our children require and deserve highly trained and compassionate caregivers. And we parents are the workers who fit that job description,” he added.

Dozens of lawmakers, parents, providers, medical professionals and others agree. In a letter to the Legislature last year, they called Oregon’s traditional Medicaid system for in-home caregivers for children with disabilities “dysfunctional.” 

“Since 2014, Oregon parents have tried to make this program work for their minor children — but for most it has been a mirage of support, wasting time and energy they could have been spending on their children’s care,” the letter said.

The temporary waiver will expire May 11, when the federal public health emergency ends. The federal government has told states that it will not be renewed again, as it has every three months since 2020. 

If SB 646 were adopted, the state would have to apply for a permanent waiver. SB 91 would create a new state plan and would cover about 1,000 children, according to human services. SB 646 would require a new waiver, and those take months to put in place. SB 91 could be enacted more quickly because it wouldn’t depend on federal approval.

But finding the money to pay for either solution could be difficult, Gelser Blouin said. 

“There isn’t a disagreement about the need, but how do we actually get something done that makes it all the way to the governor’s desk and actually provides some help to folks?” she said during the hearing.

SB 646 could cost Medicaid as much as $96 million a month, with about 75% paid by the federal government and the rest by the state, according to data from the human services agency. That compares with about $9.6 million a month under SB 91. Gelser Blouin said even that is probably too high to pass the Legislature.

Sen. Cedric Hayden, R-Roseburg, called for a compromise, potentially limiting the number of children served to the lowest-income families.

Both bills are sitting in the Senate Human Services committee. They have to be scheduled for a work session when lawmakers vote by March 17 to remain alive.

Oregon Capital Chronicle

Oregon Capital Chronicle is part of States Newsroom, a network of news bureaus supported by grants and a coalition of donors as a 501c(3) public charity. Oregon Capital Chronicle maintains editorial independence. Contact Editor Lynne Terry for questions: Follow Oregon Capital Chronicle on Facebook and Twitter.

Lynne Terry has more than 30 years of journalism experience, including a recent stint as editor of The Lund Report, a highly regarded health news site. She reported on health and food safety in her 18 years at The Oregonian, was a senior producer at Oregon Public Broadcasting and Paris correspondent for National Public Radio for nine years. She has won state, regional and national awards, including a National Headliner Award for a long-term care facility story and a top award from the National Association of Health Care Journalists for an investigation into government failures to protect the public from repeated salmonella outbreaks. She loves to cook and entertain, speaks French and is learning Portuguese.