Parents of severely disabled children urge legislature to change care system – Oregon Capital Chronicle

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

The emergency was declared at the start of the pandemic, allowing federal health rules to be relaxed. One such rule was a ban on paying parents to care for severely disabled children. Normally, taxpayer money is used to pay professional caregivers, and when the public health emergency ends, Oregon will have to revert to that system unless the rules are changed.

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

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

A mother, Jennifer Murphy, said she couldn’t find paid carers for her 9-year-old son who has Down’s syndrome, a gastrointestinal condition and other conditions that require 24-hour care.

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

She said recruiting agencies haven’t found anyone to interview in a year.

“My husband and I cannot find anyone trustworthy, drug-free, educated or qualified to care for our children,” she wrote.

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

Oriana Horneck, mother of a severely disabled 6-year-old boy, wrote that her son’s medical conditions are complex and erratic. Some days he has hundreds of mini-fits and others he vomits. She said he needed careful monitoring of his symptoms to try and manage and understand them.

“If I were to spend all 400 hours of supporting my son with someone outside of our home and taking on a full-time job myself, I would be unable to keep up with my son’s daily medical changes appropriately and to the extent necessary for his best quality of life,” Horneck wrote.

More than 4,300 Oregon children receive taxpayer-funded home care, which includes help with dressing, eating, medication, bathing and other activities. All are on Medicaid. The total cost of care is about $150 million per year, with the state paying about one-third and the rest being paid by the federal government.

Children with the highest needs are eligible

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

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

One, Lenore Eklund, said in written testimony that she had been unable to work since the birth of her daughter Charlee five years ago. “Our family lives on the income that Charlee’s father earns in his restaurants. We had to rely on WIC and SNAP to get by at times and it was nerve-wracking,” Eklund wrote of federal food benefit 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 was not intended to provide income assistance to families. It is designed to cover healthcare and disability-related services.

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

State Senator 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 would not oppose paying parents of children with the highest needs. But, she says, the issue is complicated and that the “mainstream” opposes it. One of the issues, she said, is that paying parents as caregivers changes the relationship with their child. It also reduces the child’s contact with other people.

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

She is also worried about the financial impact this could have in the event of a downturn. She said it would not be fair for a small number of people to destabilize the system.

Previously, the average monthly cost of in-home services for the most needy children was over $3,800 per month. When the state started paying parents, the cost rose to over $6,100 a month. One of the reasons is that paid parents have demanded more hours of care. Also, prices have gone up.

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

“Children are thriving like never before,” said Jessica Reinhardt, mother of a child with autism and multiple mental health issues.

She said caregivers had not met all of her child’s needs before.

Teninity said the state collects data on hospitalizations. She said they may have gone down since the state started paying parents.

“It’s a good thing,” Teninity said.

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