Medicaid, Medicaid, Medicaid
The debate over how to spend these dollars spills out into the mainstream
The Oregonian printed my opinion piece this week on the need for a bill that would reform our Medicaid system, allowing paid parent caregivers to the highest needs children in our state. The op/ed came out on the same day that the state’s economist released his report on the nearly $500 million fewer dollars the state has to spend than they thought they would have while building the budget for the last four months. I was at the Capitol on Friday and legislators were pretty morose about the situation.
This is probably quixotic of me but: I don’t care about the forecast. The state has promised a service to disabled children. If they want to cut the service, let’s debate that and pass it. Instead, what we have is a state of affairs where we are spending hundreds of millions of dollars in the name of our children but on an endless bureaucracy, all while crowing that we are so progressive. It’s crazy-making.
Paid parent caregiver programs work. Just this week, a mom in our community posted that her daughter progressed enough under her focused care that she no longer is considered “very high” needs. They are now able to leave the spot for the next person on the waitlist.
It’s exhausting to keep telling our story over and over again and to feel it being ignored. But I still have faith that, one day, respect and valuation of family caregivers’ labor will break into the mainstream.
If you want to read my full piece go to: Opinion: Legislature must follow through on promised home care for kids with disabilities
Here’s an excerpt:
[…]Under Oregon law, the state is supposed to assess children with intellectual and developmental disabilities, determine how many more hours per month of medical and behavioral health care they require than a typically developing child and then pay for a worker to provide that care. The idea behind funding home care support with Medicaid dollars was to address disabled children’s unique needs, set them on a more independent trajectory and prevent families from having to put their children in expensive out-of-home facilities.
But for years, Oregon has fallen short of this obligation. Instead, the state’s inability to provide qualified workers has resulted in psychological anguish, impoverished and broken families, and poor health outcomes for the child and their unpaid caregivers.
Oregon has promised these services in state law many times over: through its Medicaid plan, Early Periodic Screening, Diagnostic and Testing requirements for children and Measure 111, which enshrined health care access in our constitution. Families have to fill out
extensive bureaucratic paperwork, endure months-long approval processes and annual reassessments to qualify.Unfortunately, more than a third of disabled children’s hours go unfilled. We know from surveys of our community that that is not for lack of trying, nor for lack of need. It is clear that without the option to authorize and employ parents as direct support professionals or personal support workers, these home care hours are an empty promise of support. Families are being left to shoulder overwhelming responsibilities alone — resulting in financial and housing instability, poor health outcomes and worse.
Oregon already pays parents of disabled adults who need this support. And it will pay practically any other adult besides the parent to do this labor for our children. Indeed, except for the 155 families in the tiny Medicaid waiver set up by the 2023 Legislature, the only people disqualified are convicted felons and the child’s legal guardians.
[…]And yet, we are unsure if this bill will even be scheduled for a hearing in Joint Ways and Means, or simply die in committee.
Our children deserve better. They deserve the care they are legally entitled to — and they deserve the caregivers who know them best: their parents. If Oregon fails this time to put its money where its mouth is — to abide by its own guarantees and promises — we will simply follow the lead of parents in Ohio, Indiana and Illinois and sue.
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 New York Times (Opinion): “Josh Hawley: Don’t Cut Medicaid”
Josh Hawley is a Republican U.S. Senator from Missouri.
[…]Mr. Trump has promised working-class tax cuts and protection for working-class social insurance, such as Medicaid. But now a noisy contingent of corporatist Republicans — call it the party’s Wall Street wing — is urging Congress to ignore all that and get back to the old-time religion: corporate giveaways, preferences for capital and deep cuts to social insurance.
This wing of the party wants Republicans to build our big, beautiful bill around slashing health insurance for the working poor. But that argument is both morally wrong and politically suicidal.
[…]One of my constituents, a married mother of five, contacted me to explain why Medicaid is vital to her 8-year-old daughter, who depends on a feeding tube to survive. Formula, pump rentals, feeding extensions and other treatments cost $1,500 a month; prescriptions nearly double that cost. These expenses aren’t covered by private insurance. The mother wrote to me, “Without Medicaid, we would lose everything — our home, our vehicles and, eventually, our daughter.”
Congress should be doing everything possible to aid these working families, to make their health care better and more affordable. We should cap prescription drug costs, as I recently proposed. We should give all families in America with children a hefty tax cut. What we should not do is eliminate their health care.
Mr. Trump himself has been crystal clear on this point. Since taking office, he has repeatedly rejected calls for Medicaid benefit cuts. Just the other week, he said: “We are doing absolutely nothing to hurt Medicare, Medicaid or Social Security. Nothing at all.” […]
• From WHAS 11: “Kentucky's Medicaid office apologizes after special needs kids 'incorrectly denied' waiver services”
Kentucky's Medicaid Department is admitting it 'incorrectly' denied special needs kids of critical services, assuring families it's investigating what went wrong.
"We are writing to inform you we will be rereviewing your child’s case and apologize for any confusion or concern you may have experienced regarding your child’s Medicaid Home and Community-Based Services (HCBS) waiver eligibility," read the May 15 letter, sent to Kentucky families and provided to WHAS11 on Thursday.
[…]Angela Foor of Louisville, whose 8-year-old son Jack has Down Syndrome, isn't sold on the state's promise just yet.
"[They say] you will receive services while you're going through this... So they could still decide at the end to drop us regardless," Foor told WHAS11 moments after seeing the letter on Thursday. "I'm very tired. I just don't think that you should have to prove year after year that your child is disabled when it's like...it's not going to change."
[…]WHAS11 reached out to the Cabinet for Health and Family Services (CHFS), which oversees Kentucky's Medicaid services, to ask how long it may take to rereview denied cases.
"The review process is already in process and is expected to be completed as quickly as possible so families can receive answers," a spokesperson wrote back via email. […]
• From Disability Scoop: “House Panel Green-Lights Sweeping Cuts To Medicaid Despite Outcry From Disability Advocates”
In a marathon session marked by the arrest of dozens of disability rights activists, Republicans in the U.S. House of Representatives pushed ahead with plans to drastically reduce Medicaid spending.
The House Energy and Commerce Committee voted 30 to 24 on Wednesday to send the measure to the full House.
[…]The Congressional Budget Office estimates that the measure would reduce health spending — much of which comes from Medicaid — by at least $715 billion and leave 8.6 million people without health insurance. Savings from Medicaid and elsewhere would help offset an extension of tax cuts from Trump’s first term and support other administration priorities.
The oftentimes testy hearing, which spanned more than 26 hours, started off with protesters chanting “no cuts to Medicaid.” U.S. Capitol Police arrested 26 demonstrators, including 25 members of the disability rights group ADAPT, pushing many out of the hearing room in their wheelchairs.
[…]Republicans said that their bill will end “waste, fraud and abuse” in Medicaid and maintain coverage for those who need it.
“Our priority remains the same: strengthen and sustain Medicaid for those whom the program was intended to serve: expectant mothers, children, people with disabilities and the elderly,” said Rep. Brett Guthrie, a Kentucky Republican who chairs the committee.
[…]Advocates who have been warning for months about the threat of Medicaid cuts to people with disabilities said the stakes could not be higher.
[…]“When states receive less money from the federal government to fund Medicaid, they don’t make up the difference out of their state budgets. Instead, they implement cuts where they can — meaning, cuts to provider payments and to optional benefits like (home and community-based services),” [Zoe Gross, director of advocacy at the Autistic Self Advocacy Network] said.
[…]“These cuts, even if not specifically directed at community-based disability services, will squeeze a system already in crisis, harming people with disabilities and the workers supporting them,” said Barbara Merrill, chief executive officer at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers nationally. “Despite the insistence by many members of Congress that they don’t want to cut benefits for people with disabilities, drastic funding cuts of any kind will reverberate across states, thereby endangering community-based disability services — the kinds of services that are often first to go when states experience funding shortfalls.”[…]
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