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WIth families unemployed and avoiding caregiver contact, petition seeks pay. Officials cite blurred lines but may explore

PMG PHOTO BY JONATHAN HOUSE - Lenore Eklund, her husband Mark (not shown) and their daughter Charlee have been feeling under the weather, and stopped letting a state-funded caregiver into their home. They support a petition signed by 2,000 other Oregon parents asking for reimbursement as is allowed in a few other states.When Lenore Eklund gave birth, her new daughter came home from the hospital with an array of medical equipment to keep her alive.

Lenore fed baby Charlee using a tube inserted in the girl's stomach. There were nebulizer treatments. There was suctioning to clear infant airways. There were long nights spent awake.

So should Lenore and her husband, Mark, now sitting at home with no ability to earn a living, be able to receive compensation for their caregiving during the pandemic?

Currently the state pays caregivers to help people like the Eklunds. But some parents have lost their jobs; and some don't want caregivers in their house for fear of disease.

In the time of COVID-19, some parents and groups think the state should pay parents, rather than just outside caregivers, to care for medically complex or developmentally disabled children.

More than 2,200 Oregon parents of developmentally disabled kids have signed an online petition calling on the state of Oregon to temporarily allow the practice.

Prominent organizations are lining up behind the push, including United Cerebral Palsy and the health reform nonprofit founded by former Gov. John Kitzhaber, We Can Do Better.

"Our families, they are falling apart," said Katherine Ball, the United Cerebral Palsy family support director for Oregon. "They're freaking out. Are their kids going to get the best care? How will they feed them? How are they going to pay the electrical bill this month? ... We're just trying to get temporary relief during this pandemic."

But state managers and others at first said not only is the push a legally difficult one, it might not be something they'd support anyway for the program that funds caregivers for about 3,800 kids statewide.

"We want parents to be parents," said Lilia Teninty, director of the Office of Developmental Disabilities Services at the state Department of Human Services, in an interview on Friday, March 27. "We don't want to blur the line between the role of a paid caregiver, who is regulated by the state under Medicaid, and a parent who is caring for a child because they are the child's parents."

"Paying a parent doesn't change the fact that the parents are going to be stressed out, working from home and trying to also work with their child," she added. "Paying the parents doesn't add to the workforce to bring more workers into the home."

But a spokeswoman for the state, Sherryll Hoar, followed up on March 30 to say that based on input from the federal government, DHS is exploring an emergency waiver request.

Amy Fellows, a Eugene parent of a disabled child and an employee of We Can Do Better who co-authored the petition, said her nonprofit's board supports the idea because "during this time of crisis, where there isn't a way for support workers to safely come into the (home) causes some strain on the family."

Needing help; needing social distance

Lenore Eklund is sympathetic to her caregiver's situation. She's grateful that she and Mark were able to get a well-qualified home-care worker to help out four days per week at their Southeast Portland home.

"I knew this was how I was going to survive parenting a medically complex child," Lenore wrote recently.

In her spare time, she was helping with the family's sandwich bakery, The Baker's Mark in Southeast Portland. But thanks to the coronavirus, the couple has shut down their business to hunker down — the economics just didn't work.

They've been feeling sick, so to avoid infecting anyone, they asked their home-care worker to not come by anymore. They're back to taking care of Charlee, now 3 1/2 years old, themselves.

"We decided to play it on the safe side," Lenore said.

She is not complaining. You can hear the love Lenore's voice as she talks about her child. Once the rough nights and mornings are over, Charlee is a delight: outgoing, interested in other people. When the family goes to the hospital at Oregon Health & Sciences University, as they often have to do, people they've barely met will call down the hall, greeting Charlee by name.

"She's a charmer," Lenore said.

The mother said the issue is a matter of "equity" considering that the level of care and work for some families is exponentially more than in others. She said she hopes the petition will "raise awareness of what it means to support medically complex kids, and bring in more support for families."

It's a notion that generates sympathy with a lot of people, including Melissa Unger, head of the union that represents home-care workers in Oregon, Local 503 of the Service Employees International Union. Her members have been struggling for the same reasons that the parents cite to support their petition. But they also feel for the families.

Unger said a personal support worker last week told the union "'Look, I'm really worried about the person I support ... because they can't work. It doesn't make sense. It's not safe for me to be in their home for lots of reasons. "

Adds Unger, "Depending on the kids' situation, they could have other health conditions that put them at risk of having other people around them.""

Unger thinks a pandemic-only change makes sense. "I do think that there could be an opportunity for just a rule change in this (pandemic) time period. ... This is a really legitimate issue that folks are bringing up ... it feels like this is a way to really make sure that people with developmental disabilities have the support they need."

Other states reimburse parents for disabled care

Elsewhere, some states already allow parents to be paid under some circumstances, including California and Colorado.

The federal government has even urged states to apply for waivers, noting that pay for parents of disabled kids is a possibility.

Teninty, however, said that Oregon's program for disabled families operates under a different section of law than most. She said that she doesn't think it's possible under current federal law to pursue that because of the legal constraints on Oregon's program — intended to prohibit conflicts of interest between having the parent also write the care plan for the child.

Given the many emergency legal exemptions that states are now seeking at the federal level, might it be possible for Oregon to follow suit? Teninty at first said she doesn't think her agency has explored the question.CMS - The federal government is actively soliciting for states to apply to allow reimbursement of parents of medically complex or disabled children. Oregon officials, citing differences in a state-only waiver in Oregon, say they haven't explored whether they can apply.

State Sen. Sara Gelser, a former Human Services family support worker who herself has a disabled child, said she is aware of the question. She noted that parents were seeking to be paid as caregivers long before the coronavirus pandemic.

She said that she's not sympathetic to that argument, but she does think an exemption of some kind might be possible.

"The proposal is not coming forward because of the pandemic," she said. "That proposal is coming forward because people believe they should be paid to care for their children," Gelser said.

"On a fundamental level, and from a disability rights perspective, I fundamentally disagree with that premise."

She said she'd be open to a temporary stipend for parents of developmentally disabled children during the pandemic, but not for the hourly reimbursement that the state currently pays outside caregivers. She said it would have to be based on a family's income, and on the child's needs.

On the federal side, Gelser added, "I think that there's so much flexibility right now, that there are things that are possible that nobody ever would have imagined would be possible before. And I think when it comes to a specific or emergency situation, absolutely, I am open to using that flexibility in a very targeted way. But it's a very slippery slope."

Ball, also a parent of a disabled child — albeit one who's now 20 years old — doesn't think some state officials fully appreciate the tremendous demands placed on these parents — demands now compounded by the current crisis.

"The big thing right now that we're trying to do is just during this temporary emergency situation, allowing parents to get paid for the hours that are already banked for their personal service workers and direct support worker," she said. "The money has already been budgeted, it's already there."

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