Tigard resident Mick Stevens never had an easy time finding trained caregivers to look after his daughter Jillian.
Jillian, 11, is quadriplegic with cerebral palsy, and is also autistic. With Medicaid paying her caregivers only $16-$19 an hour, money was not a big draw. And besides, most caregivers were scared away by the complexities of her medical and physical needs, Stevens said.
Then came the COVID-19 pandemic, which made finding help even harder. But it also brought a boon: Citing the public health emergency, the federal government temporarily let Oregon use Medicaid money to pay parents of severely developmentally disabled children to work as their caregivers. Except during emergencies, the federal Medicaid program that Oregon uses bars parents from being both the child’s official unpaid legal representative and the government-paid medical caregiver.
Stevens said the money – $19 an hour for 40 hours a week for about a year now – has been a godsend, letting him put his paralegal career on hold and devoting himself to Jillian. His daily routine includes lifting and moving her between bed, wheelchair, stander, gait trainer and floor. He feeds and bathes her. He works with her on fine motor skills, movements and stretches, and takes her to physical therapy and other appointments.
“We’ve seen so many victories for Jilly,” he said. In recent months, she’s learned how to move her head to control her wheelchair, he said. Daily exercises have strengthened her hips to the point she may no longer need surgery to correct her under-developed hip sockets, he said.
“You can’t pay (hired) caregivers to take on that kind of responsibility,” he said.
Yet, with the end of the public health emergency looming, the rule exemption is slated to end, leaving Stevens and hundreds of other Oregon parents of severely disabled children in a financial lurch. That could happen as soon as mid-April.
Stevens and other parents are relentlessly lobbying the Oregon Health Authority and the Oregon Department of Human Services to persuade the federal Centers for Medicare & Medicaid Services to keep a parental pay system in place once the pandemic is declared over.
State officials this week said they met March 1 with federal Medicaid officials and are working on a fix. They won’t disclose many details, other than to indicate they are exploring several other Medicaid programs that are currently not used by the state that could permit the payments.
However, Angela Yeager, a spokeswoman for the Department of Human Services had told The Lund Report that switching to a different type of federal Medicaid program allowing parental caregiver payments would result in the state forfeiting more than $150 million a year in federal money. That made the idea a non-starter, DHS said in a video and slide presentation the agency made to parents and others late last year.
Parents of 300 Children Are Paid
During the pandemic, the parents of about 300 severely developmentally disabled children have signed up to be paid for their caregiver work, Yeager said. The pay is typically the same as a hired caregiver would get -- $16 to $19 an hour – for up to 40 hours a week. The hours can be used entirely by one parent – that’s what Stevens does while his wife continues her work as a paralegal – or split between them.
Advocates for making the system permanent stress it is spending-neutral to the Medicaid program: if the state stops paying parents, it will have to pay any outside caregivers they find. And the amount of money at issue is relatively small: The state pays the roughly 300 households a total of about $11 million a year.
The system is overseen by the Department of Human Services, but funded through the Oregon Health Authority’s Medicaid program, so both agencies are involved in seeking a solution.
In addition to the 300 children whose parents are paid to provide care, about 4,100 other severely disabled children under age 18 are cared for in their homes by Medicaid-funded outside caregivers, said Yeager. The whole program costs about $132 million a year, she said.
Stevens said the high quality of care parents provide – he cited his work with Jillian on her hip strength – saves money because it short-circuits the need for more costly care.
It’s unclear why the federal program Oregon uses – it goes under the name K Plan – won’t pay parents, except during an emergency, but will pay outside caregivers. Parents who opt to work as paid caregivers must go through similar training and other vetting that outside caregivers are subject to.
A spokesperson for the Centers for Medicare & Medicaid Services did not explain the K Plan restriction. But the federal government offers several other Medicaid options that pays family members to serve as caregivers, and it’s up to states to pick the program they prefer, the spokesperson said: “CMS continues to work with our state partners to ensure they have the flexibilities they need to provide high-quality care for the individuals enrolled in the Medicaid program.”
Pay Is Big Help
Parents say the pay – it can total up to about $37,000 a year -- has been a big relief and has allowed them to ramp up the care their children get. They dread having to resume searching for paid caregivers who may – or may not – have the needed skills, or even show up for work.
Portland resident Lenore Eklund said the tasks and hours involved in caring for her 5-year-old severely disabled daughter Charlee often are far beyond what an outside caregiver can do.
About a year ago, under the federal waiver, the state began paying Eklund to care for Charlee.
“Being Charlee’s paid caregiver has given our family stability for the first time since Charlee was born,” Eklund wrote to OHA and DHS officials late last year in urging a continuation of the payment system.
With cerebral palsy, Charlee can’t talk or move well and needs intricate help. Her airway must be suctioned regularly to keep it clear. She is fed through a tube in her stomach, Eklund said. Sometimes the feeding tube is accidentally pulled out by Charlee’s movements, and Eklund said she has learned the tricky task of cleaning and reinstalling it, work that paid caregivers and even medical staff at clinics were not trained to do it.
Eklund said she has spent all her time caring for Charlee since her birth. Eklund said she suspended her career as a documentary film-maker once Charlee was born, and the family gets by on her caregiver payments and her husband’s income from running restaurants.
It’s not just parents who are lobbying for a continuation of the pay program.
In February, the state’s Medicaid Advisory Committee, a federally mandated panel of parents, disability rights advocates, medical doctors, health insurance executives and government officials, urged the Oregon Health Authority and the Department of Human Services to find a way to continue paying parents after the pandemic. The panel noted that prior to the pandemic, because of the “inadequate supply of appropriate caregivers” families with severely disabled children were unable to use all the paid hours the state allocated them.
The panel urged the agencies to arrange a meeting between parents and the Centers for Medicare & Medicaid Services to seek solutions. No meeting with parents has been arranged, however.
But in an update earlier this week to state staff and to parents and others, OHA and DHS executives said they continue to work on the issue.
Any new payment systems would “need to be reviewed and assessed for their budget impact and viability,” wrote Lilia Teninty, director of the DHS’s Office of Developmental Disabilities Services, and Dana Hittle, the Oregon Health Authority’s interim Medicaid director.
The federal public health emergency is slated to end April 16, but “indications are that (the Center for Medicare & Medicaid Services) may extend that timeframe again,” they wrote.
You can reach Christian Wihtol at [email protected].