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Parents of children with severe disabilities press Legislature for change in caregiving system

(Amanda Loman/Salem Reporter)

A group of parents with severely disabled children wants the state to continue to pay them as caregivers when the federal public health emergency ends.

The emergency was declared at the beginning of the pandemic, allowing federal health rules to be relaxed. One such rule was a prohibition on paying parents to care for children with severe disabilities. Normally, tax dollars are used to pay professional caregivers, and when the public health emergency ends, Oregon will have to revert back to that system unless the rules are changed. 

The public health emergency is due to end July 15, but federal authorities said they would give states 60-days notice before ending it. That means it will be extended beyond July, though no one knows for how long.

In the meantime, parents who are being paid to care for their children by state and federal funds want that system to continue. In the next session, state lawmakers are likely to consider a legislative change. During a hearing of a state Senate committee on Friday, several testified or submitted written testimony explaining why they want to be paid caregivers.

One mother, Jennifer Murphy, said she can’t find paid caregivers for her 9-year-old son who has Down syndrome, a gastrointestinal condition and other conditions that require round-the-clock care. 

“We are in a workforce shortage crisis,” Murphy wrote. “There is no one to hire, yet alone qualified with my children.”

She said hiring agencies have been unable to find anyone for her to interview in a year. 

“My husband and I can’t find anyone trustworthy, drug free, educated or qualified to provide the care to our children,” she wrote.

Other mothers also cited difficulties finding caregivers, and if they could find one, they said they could not get that person to work as many hours as were needed.

Oriana Horneck, mother of a 6-year-old boy with severe disabilities, wrote that her son’s medical conditions are complex and erratic. Some days he has hundreds of mini-seizures and on others he vomits. She said he requires careful tracking of his symptoms to try to manage and understand them.

“If I were to pass off all of my son’s 400+ hours of caregiver support to someone outside our home and hold a full-time job myself, I would be unable to track my son’s daily medical changes appropriately and to the degree necessary for his best quality of life,” Horneck wrote.

More than 4,300 children in Oregon receive taxpayer-supported in-home care, which includes helping with dressing, eating, taking medication, toileting and other activities. All are on Medicaid. The total cost for the care is about $150 million a year, with the state paying about one-third and the rest paid by the federal government.

Children with highest needs qualify

During the pandemic, the state Department of Human Services has allowed parents of children who need at least eight hours a day of caregiving to be paid. About 700 children qualify, Lilia Teninty, director of the Office of Developmental Disabilities Services, told the committee. Around 300 children are receiving paid services from a parent or guardian.

That money has helped families stabilize their finances, mothers told the committee.

One of them, Lenore Eklund said in written testimony that she has not been able to work since her daughter Charlee was born five years ago. “Our family subsists on the income Charlee’s dad makes at his restaurants. We have had to rely on WIC and SNAP to get by at times and it was agonizing,” Eklund wrote of the federal food benefits programs for low-income families. “Being Charlee’s paid caregiver has given our family stability for the first time since Charlee was born.” 

Teninty said Medicaid is not intended to provide income assistance to families. It is designed to cover health care and disability related services.

The money is directed toward the child, not the parents, and Oregon does not consider parental income when determining whether a child is eligible for disability services.

State Sen. Sara Gelser Blouin, D-Corvallis and chair of the Senate Interim Committee on Human Services, Mental Health and Recovery, told the Capital Chronicle in an interview that she wouldn’t oppose paying parents of children with the highest needs. But, she said the issue is complicated and that the “mainstream” opposes it. One issue, she said, is that paying parents as caregivers changes the relationship with their child. It also reduces the child’s contacts with other people. 

“We don’t use Medicaid to replace natural supports,” Gelser Blouin said.

She’s also concerned about the financial impact it could have in a downturn. She said it would not be right if a small number of people destabilized the system.

Previously, the average monthly cost for in-home services for the highest needs children was more than $3,800 a month. When the state started paying parents, the cost went up to more than $6,100 a month. One reason is that paid parents have claimed more caregiving hours. Also, rates went up.

Parents say the change has had a positive effect on the children. 

“Children are thriving like they never have before,” testified Jessa Reinhardt, mother of a child with autism and multiple mental health problems. 

She said that caregivers previously had not attended to all of her child’s needs.

Teninity said the state is collecting data on hospitalizations. She said they may have decreased since the state started paying parents.

“That’s a good thing,” Teninity said.

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