All Aboard the Medicaid Roller Coaster
Plus: Washington eyes a proposal to pay parent-caregivers of minors while aging parents of adult children explore a unique housing model
This week, families who rely on Medicaid experienced whiplash. News broke Tuesday morning that the Trump administration had sent out a memo suddenly “freezing” federal grants and loans. The two-page memo seemed aimed at grants to nonprofits and specifically stated that it did not include “…assistance received directly by individuals” and that: “Nothing in this memo should be construed to impact Medicare or Social Security benefits.”
But it was unclear if that also included Medicaid. Medicaid is administered through a series of federal grant to states, through the Centers for Medicare and Medicaid, which is part of the U.S. Department of Health and Human Services. The legal structure that funds Medicare and Medicaid is the Social Security Act. Why was Medicaid not mentioned alongside Medicare and Social Security?
When asked if Medicaid was included in the freeze, White House Press Secretary Karoline Leavitt didn’t know, saying: “I’ll check back on that.” Then, Oregon Senator Ron Wyden tweeted out that all the Medicaid portals in every state were down. A little while later, Leavitt tweeted that they “expect the portal will be back online shortly” but with no explanation about why it went down in the first place. About an hour later, the administration released a Q&A saying Medicaid and SNAP benefits would not be affected. Hours later, a federal judge blocked the whole freeze anyway.
The confusion, to me, seems to stem from a widespread ignorance on the part of the Trump administration as to what Medicaid is and does. That was borne out in testimony from Robert Kennedy, Jr., who wants to lead HHS, the agency that runs Medicaid, but who said in his confirmation hearing that: “The premiums are too high. The deductibles are too high” — except that there are no premiums or deductibles in Medicaid.
Are we having fun on the roller coaster ride yet? Here’s another loop.
Soon, House Republicans are expected to come out with a bill that will cut federal spending, partly through Medicaid.
If you have read any issue of this newsletter, you can probably guess that I am a big fan of reforming Medicaid. On the “menu” of spending cut options that Politico published, Republican leadership called it"Making Medicaid Work for the Most Vulnerable."
Great. Let’s do that.
After all, Medicaid is a lifeline for 10 million children and adults with disabilities, covering everything from feeding tubes to in-home nursing care to the therapies that allow them to attend school. But this list of proposed Medicaid "savings"— totaling over $2.3 trillion — isn’t a list of concepts that have historically worked to get those dollars redirected, as promised.
Among the proposed cuts are per capita caps, reduced federal funding matches, and work requirements. One idea that is on their “menu” of Medicaid cuts does make sense to me. Provider taxes are a way for states to appear as though they are providing more funding than they are, gaming the system to get more federal dollars. But the rest of the ideas have been tried and haven’t panned out so well.
In 2017, state-level Medicaid in Texas cuts slashed funding for therapy services, affecting 60,000 children. Families struggled to find providers willing to accept the new reimbursement, leaving children without access to life-changing therapies. In Tennessee, a shift to a capped Medicaid funding model led to widespread service reductions—so much so that lawsuits forced the state to reinstate programs for eligible patients.
Per capita caps and FMAP (federal matching dollars) reductions mean that states will be forced to pony up their own revenue (i.e. increase taxes) or cut services. What will they cut? Home-based nursing care? School-based therapy? What if they bring back years-long wait lists for Medicaid services or add to those who already have them?
As for the work requirement proposal, it is framed as a way to encourage personal responsibility. But parent-caregivers who are not allowed to be paid for their labor are “unemployed” and would therefore no longer qualify. And in Arkansas, when work requirements were implemented in 2018, 18,000 people lost coverage — not because they failed to work, but because of the extra paperwork.
If the goal is to reduce Medicaid waste, there are better ways. Private Managed Care Organizations (MCOs), which states pay to administer Medicaid, have a history of denying necessary care to maximize profits. Requiring them to spend a minimum percentage of funds on actual patient care — rather than administrative overhead —could save billions without harming families. I also firmly believe that getting rid of the layers of complexity and the myriad siloed buckets of Medicaid spending would root out a lot of waste.
And — you knew I was going to say it — we should pay family caregivers. Outcomes for the clients are better, other areas of government spending are reduced, and families thrive when we pay for the loving care labor that keeps disabled loved ones in home and community-based services.
For families like mine, Medicaid isn’t just a line item in a budget. It’s the difference between our children thriving and our entire family struggling. If policymakers truly want to “make Medicaid work for the most vulnerable,” they should start by listening to the families who rely on it every day.
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 Chronicle: “Washington state considers paying parents for caring for disabled kids amid in-home shortages”
Washington may soon join Illinois, California and other states in compensating the parents of developmentally disabled children under legislation considered by the Senate on Monday.
State lawmakers proposed something similar last year but failed to get it out of the Legislature. If approved, Senate Bill 5211 would allow parents to receive payments for providing what qualifies as “extraordinary care.” However, there is a stipulation attached.
The bipartisan proposal would require the Centers for Medicare & Medicaid Services to amend certain waivers to allow for the payments. While state revenue would fund most of the $35.3 million it could cost each biennium, roughly 33% would come from the federal government.
[…]According to SB 5211, Washington’s childcare shortage disproportionately affects families with disabled children. The state allocates personal care hours for the kids, but due to a lack of an in-home care workforce, 41% of that time goes unused, meaning parents pick up the slack.
[…]“Our family is reaching a crisis point,” Jessica Morrow testified, adding that caring for her young son now requires a full-time commitment from both parents. “We simply cannot continue to care for Jayden with no income.”
Morrow said her family was told the only other option was to institutionalize him out of state, likely in Kansas, which already employs parents as caregivers to some degree.[…]
• From KING5 (Washington): “Anacortes group offers hope for aging parents caring for disabled children”
[…]Mom and Dad worry about what will happen to Curt Johnson when they can no longer care for him.
"It's put a real strain on his life, and ours, too, as far as that goes," Iver Johnson said. "We don't have too many more years. We don't have the strength to do too much."
In Anacortes, advocates for adults with intellectual and developmental disabilities have identified 45 people at risk of losing their caregivers.
Washington State Department of Social and Health Services (DSHS) estimates there are at least 37,000 statewide."We are the sole safety net for that person's existence," Amy Morris-Young said.
Morris-Young is part of a group called Anacortes Able Housing.
The non-profit is working to raise about $1.5 million to buy or build two homes in the city that will house six disabled adults when their parents can't care for them.
The other option is to be placed in a home by DSHS anywhere in the state.
"I can't imagine the trauma," Morris-Young said. "You've not only lost your caregiver, you've lost your home, your community, your routine. You lose everything in one day."
The nonprofit is providing hope for families like the Johnsons, hoping to find a peaceful place for Curt to live and peace of mind for Mom and Dad. […]
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