How much should we be freaking out about 504 and Medicaid right now?
Plus: Arizona bill aims to protect DD services from expected cuts; Oregon paid parent caregiver rally; Southeast Asian nation's make-a-thon highlights need for broader inclusion
For many in the disability community, the earth felt like it shifted this week. Threats surfaced to Section 504 — the foundational law giving disabled people the right to live full, integrated lives in the community free from discrimination — and Medicaid — the funding mechanism for the supports to make that right possible.
But how much real and present danger do those threats make up? To cut through the alarming language that social media algorithms prioritize, I went digging through primary sources to try to figure that out. Let me show you what I found.
What is going on with Section 504?
Section 504 is the bedrock foundation for disability rights in the United States. You may have heard about it through movies like Crip Camp or books like Judith Heumann’s memoir — both of which I highly recommend for history we weren’t taught in school.
This week’s threat — popularized by the Disability Rights Education and Defense Fund (DREDF) — is a lawsuit from 17 attorneys general called Texas v. Becerra. I was one of 3,000 people in an at-capacity webinar the DREDF put on about the case. According to former Biden administrator Alison Barkhoff, the lawsuit comes on the heels of a massive update of the rules for Section 504. The update was prompted by pandemic-era care rationing, telehealth access issues and other forms of discrimination that were not envisioned when The Rehabilitation Act passed in 1973. The Act — specifically the Section 504 rules enforcing the Act — say that any party receiving federal money is prohibited from discrimination on the basis of disability. This is how schools, workplaces and public transportation became the integrated environments we know today.
The complaint in Texas v Becerra is centered on the preamble to the updated rules. The preamble says that gender dysphoria could be considered a disability. (You can read an explanation of why the Biden Administration did that in the comments of the proposed rule change here.) The inclusion of gender dysphoria as a disability is not in statute — i.e. the law. The administration said they mentioned it because some courts in the country have come to the conclusion that gender dysphoria is a disability. The 17 attorneys general argue that including that language means the rules changed after they took the money and that that’s not fair. To redress this, they ask the court for several things, one of which is to declare Section 504 unconstitutional (see page 42 of the lawsuit).
If the court were to do that, it would be devastating to protections for disabled people. The 1990 Americans with Disabilities Act and mountains of case law are built on Section 504.
But is this just lawyerly bluster? Would the court really do that?
Maybe.
It’s not uncommon for lawyers to ask for the moon and stars, hoping for a moon pie. But the fact remains that the top legal representative of the states of Texas, Alaska, Alabama, Arkansas, Florida, Georgia, Indiana, Iowa, Kansas, Louisiana, Missouri, Montana, Nebraska, South Carolina, South Dakota, Utah and West Virginia DID ask the court to throw out Section 504 entirely and that’s shameful.
The legal fight over the Affordable Care Act (i.e. “Obamacare”) similarly asked the court to wholly reject the law. The court instead rejected a narrow portion - the individual mandate.
On the other hand, Mississippi State Health Officer Thomas Dobbs initially asked the court for the ability to preserve the state’s 15-week abortion ban despite Roe v. Wade. (See page 5 of their initial complaint.) But the state’s lawyers later amended the request to ask the court to overturn the abortion ruling entirely (court transcript, page 5).
That is what ended up happening in the Dobbs decision.
The activism that DREDF called for appears to be working. South Dakota and Utah’s attorneys general were among those releasing statements about the case. The West Virginia attorney general’s office released a statement this week that seemed to me to imply that they hadn’t read the whole lawsuit before signing on. They added that they think the matter will be resolved soon.
“This lawsuit has been stayed and will likely be dismissed in the very near future because we anticipate that the Trump administration is going to do away with the disputed language – reassuring families that their plans and funding will remain to care for their children.”
An update in the case is expected Feb. 25.
What’s going on with Medicaid?
The U.S. House of Representatives introduced a long-expected resolution on Wednesday calling for about $2 trillion in cuts across the federal government. Of those, the Energy and Commerce committee has to figure out how to cut $880 billion over the next ten years (see page 35 of the resolution).
The House Committee on Energy and Commerce covers a huge swath of programs — the Department of Energy, Transportation Department to the Federal Trade Commission, Food and Drug Administration, and the Federal Communications Commission. It also covers Health and Human Services, which contains Social Security, Medicare and Medicaid. Republicans have said that Social Security and Medicare are safe and have a number of ideas for how Medicaid could be reduced — from work requirements for the able-bodied insured to reductions in federal matching dollars to states.
President Donald Trump has said he will “love and cherish” Medicaid, making it “more effective and better.”
I certainly disagree with the statement last month from 200 organizations in the Consortium for Constituents with Disabilities that Medicaid is already “lean and efficient.” So I am open to anyone who wants to cut through the massively complex hodgepodge of different programs for different populations in different states.
Will simply cutting their budgets do that, though? I highly doubt it.
As you can see on page 103-4 of the 2025 budget for Medicaid, Home and Community Based Services are one of the “optional” features of Medicaid. These are what pay for home care supports. The possibility of them disappearing is terrifying to me and pretty much everyone else I know in this community.
However, every HCBS program (typically — though not always — called a “waiver”) has to prove that it is “cost neutral” to the guaranteed covered service — institutional care. That’s what the waiver is waiving. So getting rid of HCBS doesn’t sound like a winning strategy for cutting a budget when it is already proven to be cheaper than the alternative.
Whether the folks in charge of the hatchet job currently going on in federal funding understand that, though, is an open question.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Hoodline: “Arizona Rep. Gutierrez proposes bill to safeguard funding for developmental disability services”
In a move to bolster support for vulnerable groups, Representative Nancy Gutierrez proposed new legislation [Feb. 11] aimed at securing vital resources for individuals with developmental disabilities in Arizona. This bill is an attempt to ring-fence funding for services that assist over 50,000 Arizonans, ensuring those diagnosed with conditions like autism, cerebral palsy, and Down syndrome continue to receive necessary care.
The proposal arrives hot on the heels of comments from Republican House Appropriations Chair Rep. Livingston that foreshadowed potential financial cuts to the Division of Developmental Disabilities (DDD). In a statement [released] by the Office of Arizona Governor, Governor Katie Hobbs criticized the suggested cuts as purposeful harm aimed at the state's most vulnerable, while contrasting it with the lack of financial scrutiny applied to the ESA [Empowerment Scholarship Accounts, a type of school voucher] entitlement program, notorious for its extravagant expenditures funded by taxpayer money.
[…]Critics of the proposed cuts to DDD argue that the funds enable individuals with developmental disabilities to engage productively with their communities and pursue their aspirations. The bill introduced by Gutierrez, reflecting the governor's executive budget proposal, seeks to protect these essential programs and has garnered praise from disability advocates and families reliant on these services.
• From KATU: “Advocates for paid-parent care rally at Oregon State Capitol”
Dozens of advocates for expanding care for disabled children rallied at the Oregon State Capitol – as lawmakers discussed an ambitious plan to expand a paid-parent care program.
There is bipartisan support to make it easier to pay parents of disabled children for providing certain care to their kids. However, there’s also concern from some lawmakers about the potential cost of this program.
[…]KATU Investigates found about 40% of state-approved care was not provided in previous years for a range of reasons, partly due to the workforce.
Parents of disabled children made their pitch to the Senate Committee on Healthcare.
“We know what we need for our children to survive and thrive. Hear us. Reform Oregon's backward system so we can get back to what really matters: providing care for our extraordinary children,” mother Shasta Kearns Moore said.
“Please hear me when I say that we are out of options and that we are out of time. When asked by your leadership, I hope you will stand up among your peers. I hope you will say, ‘I prioritize Oregon's highest needs children, and Tensy’s Law is the answer,’” mother Calli Ross said.
[…]The financial impact will be the big hurdle with this legislation. However, parents and some lawmakers argued the money shouldn’t be an issue, because the care is already approved. […]
• From Keunsel (Bhutan): “Technology can empower our children with disability”
[…]Across the country, many children with disabilities are left behind—not because they lack ability, but because they lack support.
A recent “South Asia Regional Makeathon for Assistive Technology” in Thimphu is proving that technology can help bridge this gap. Using 3D printing, the event is creating customised devices that could make life easier for children with disabilities. More importantly, it is sparking a conversation about how innovation can be used to build a more inclusive Bhutan.
[…]It is also about ensuring that these solutions are accessible to everyone. The open-source approach—where designs are made freely available—means that anyone with a 3D printer can reproduce these devices. This is technology at its best: practical, affordable, and inclusive.
We are making progress in supporting people with disabilities, but there is still a long way to go. Schools struggle with limited resources, and many children with special needs do not receive the education they deserve. Families often bear the burden alone, with little institutional support. Even where assistive devices are available, they are expensive or poorly suited to local conditions. The makeathon highlights an important shift—one where Bhutan is not just importing solutions but creating its own. […]
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