The Buck Stops Here
Plus: Oregon parents push to be paid caregivers; Kansan NGO stops work for disabled children after USAID implosion; OMB memo still reeking havoc on disability orgs despite reversal
Every parent knows the feeling of picking up the slack when systems fail, but for parents of disabled children, this isn’t an occasional inconvenience — it’s a full-time, unpaid job. When insurance companies fail to communicate, we’re expected to chase down approvals. When schools are short-staffed, we become the one-on-one aides. When hospitals are overwhelmed, we take over medical care at home. All of this work is essential, yet it largely goes unrecognized and uncompensated.
The reality is that entire industries rely on the unpaid labor of family caregivers. Insurance companies benefit when parents navigate their bureaucracy instead of hiring more support staff. Schools count on our availability when they can’t provide adequate accommodations. Hospitalists discharge our children early, acknowledging privately that they can’t do it as well as we can. These systems depend on us, yet they never acknowledge our role as workers — let alone pay us for it.
Caregiving isn’t just a personal responsibility; it’s labor that keeps society functioning. And if caregivers stopped doing this work, the cracks in these systems would become impossible to ignore. So when do we start valuing this labor for what it really is — work that deserves recognition, support, and fair compensation?
On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From The Lund Report: “Parents of high-needs children push Oregon to streamline payments for providing care”
Hundreds of Oregon parents who care for their high-needs children may be closer than ever to getting paid by a Medicaid-funded state program.
State Sen. Deb Patterson, a Salem Democrat, is spearheading legislation that would increase the ability of parents caring for young kids with major medical or behavioral health needs to be reimbursed for their efforts, much as the state pays parents of adult children already.
[…]Officials have long used federal Medicaid funds to pay parents or guardians of high-needs children to provide care. But unlike in some other states, that benefit doesn’t start in Oregon until the children turn 18.
Since 2019, parents of high-needs minors have been pushing to change that. As the pandemic fostered a lack of caregivers and kept people home, state officials dropped their opposition to the idea and set up a temporary program to pay parents of 300 children with severe medical or behavioral needs. The program expired despite urging from the state Medicaid Advisory Committee to continue it.
Department of Human Services officials do not formally oppose the bill. But they contend expanding access to the families of more than 1,000 additional children under Senate Bill 538 would cost almost $40 million a year.
That price tag could kill the bill. Some in Salem expect the budget picture to tighten, in part due to potential funding cuts under the Trump administration.
Supporters of the bill dispute the DHS estimate, noting the state already pays outside caregivers. Not only that, but in the current pilot program, parents have to work for outside agencies that charge the state much higher rates than caregivers are paid. Those agencies include Rever Grand, a firm charged with fraud by the Oregon Department of Justice. Critics say some companies play games to inflate billing.
[…]Last year the federal government urged states to “strongly consider” paying parents and guardians to fulfill the obligation to provide services to children with disabilities. State Sen. Cedric Hayden, a Fall Creek Republican who cosponsors the bill, told The Lund Report that because of workforce shortages, the state isn’t meeting those obligations.
“We’re saying, until you can fill that gap, let parents fill that gap,” he said.
[…]Oriana Horneck told lawmakers that she used to be afraid of needles and blood. But she said her 9-year-old son, Avery, has a rare genetic disorder and epileptic encephalopathy. His medical needs have become more complex every year, requiring specific and time-intensive treatments, she said.
She said she has become an expert after nine years of managing seizures, medications, respiratory therapies, feeding tube replacements and other tasks.
“I’m doing the job that any other caregiver can get paid for,” she said. “The only reason I cannot be paid for the work I’m doing for Avery is because I'm his mother.”
• From The Topeka Capital-Journal: “Without USAID funding, Kansans who help children with disabilities lose jobs”
After losing its federal funding following the Trump administration's dismantling of the foreign aid agency, a business that helps students with disabilities is on the verge of bankruptcy and has furloughed its Kansas employees.
Inclusive Development Partners is co-owned by Anne Hayes, of Overland Park, and has worked in 25 countries around the world to include learners with disabilities in education programs. But that work has now stopped with the shutdown of the U.S. Agency for International Development, or USAID, by President Donald Trump and billionaire Elon Musk.
[…]The company, which hasn't been paid for work it did in December and January, has no legal recourse against the federal government, Hayes said. It is a subrecipient of larger organizations that have the direct grant agreements with USAID, which likewise have not been paid.
"I'm not a radical lunatic, as Trump said. I'm somebody who has dedicated my entire professional life to helping kids with disabilities," Hayes said. "I don't understand how this is bad."
[…]Speaking to reporters in Topeka earlier this week, U.S. Sen. Roger Marshall, R-Kansas, alleged that USAID has been plagued by waste, fraud and abuse. He said that "it's very good to take a pause on all of our money that we're sending outside of this country."
[…]The company has received limited communication since the changes at the federal government.
They have been sent stop work orders from USAID. They have also been sent a DEIA waiver to sign.
The waiver, which references an executive order by Trump, requires certification that "all activities to promote 'diversity, equity, inclusion and accessibility' (DEIA) funded by the above referenced sub-grant funds have ceased."
"We've had two projects that have been fully terminated because they had the words 'diversity' and 'inclusion' in them," Hayes said.[…]
• From CNN: “Services for disabled Americans, trans youth and refugees feel the squeeze from Trump’s early actions”
President Donald Trump’s bid to remake the federal government is already affecting some vulnerable populations in the United States, according to nonprofits and health care providers who are grappling with delays in federal funding, new rules and changed guidance.
A 19-year-old West Virginia resident with intellectual disabilities, for example, was not able to start a job at Goodwill on Monday because a nonprofit group that facilitates employment had not received the federal grant money it requested last week.
It was a result of one of the broadest and most head-spinning moves of the second Trump administration’s early days: a sweeping Office of Management and Budget memo ordering a pause on trillions in federal grants, loans and financial assistance.
It was quickly rescinded by the administration, and federal judges have since blocked that funding freeze from taking effect. But some organizations say despite the court rulings, they are still unable to access funding. And administration lawyers have also effectively given federal agencies the green light to slash payments on their own.
The delay in receiving its federal funds forced the Appalachian Center for Independent Living, which has operated in the Charleston, West Virginia, area for four decades, to lay off its employment training specialist – one of its five staffers – and halt its job placement services.[…]
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