Services – absent a right – won’t FREE OUR PEOPLE!

By Bruce Darling

Elena isn’t one particular person. She’s a composite. She represents the people we fight for at the Center for Disability Rights, but every piece of her story is happening to somebody right now, and it happens in every state.

Elena’s mother gets her out of bed every morning, and has done that for sixteen years. She learned how to transfer her daughter safely, how to manage a catheter, how to catch a pressure sore before it turns into a hospital admission, by doing it. She helps her daughter at five in the morning, because the alternative was institutionalization while her daughter’s name sat on a waiting list.

Elena is one crisis away from a nursing facility, and not because she needs one. The system that’s supposed to keep her out of one runs on her mother’s back, and backs (as we know) give out. If her mother gets sick, needs surgery, or just can’t do it anymore, there’s no backup plan. There’s an institution and waiting list. This isn’t hypothetical. I watched as my mother took care of my grandmother for years, until they both ended up in the hospital. This happens every day in the USA.

Nobody outside the Disability Community noticed the ground shift this summer

In June, the Justice Department’s Office of Legal Counsel put out a memo declaring the existing Olmstead integration regulations unlawful. Then in September, DOJ and a coalition of states asked a federal court in Texas v. Kennedy to vacate the integration-mandate language in HHS’s 2024 Section 504 rule. On September 23, the court said yes. The rule’s definition of “most integrated setting,” and the language requiring providers to prioritize serving Disabled people in one, are gone. The court left the underlying statutes alone — Olmstead, Section 504, and the ADA are still on the books — but the regulatory language that gave that mandate teeth in day-to-day enforcement is vacated. DOJ asked for that outcome. It didn’t fight to keep the rule.

Olmstead v. L.C. is why people like Elena have gotten services in their own homes instead of a facility. It’s the legal foundation under which Disabled people get to stay at home with their family instead of ending up somewhere with ward or a shared room, a nurse’s station, and a schedule that belongs to someone else.

That foundation was never just the Supreme Court’s word. It depended on regulations that spelled out what “most integrated setting” actually meant in practice, and advocates just watched the agency responsible for enforcing it help take that language off the books. Regulations can be reinterpreted, narrowed by a memo. Now that the Supreme Court’s decision in Loper Bright has stripped away the deference courts used to give federal agencies, they can also be vacated outright, which is what just happened. Advocates had been told the floor was solid. This summer and fall, some of the people responsible for holding it up were the ones prying at it.

Two bills showed up in Congress claiming to answer that. People like me read both of them closely, because Elena’s life, and the lives of a hundreds of thousands of people like her, is what’s actually being negotiated in the text of those bills.

The HCBS Access Act gives Elena something. It just isn’t the thing she needs.

Give the HCBS Access Act its due. It would meaningfully expand who qualifies for home and community-based services. It would end waiting lists. It would drop the eligibility bar to two ADL or IADL limitations, well below what many states currently require for institutional placement — though unlike the Latonya Reeves Freedom Act, it stays inside Medicaid, so eligibility still runs through Medicaid’s financial rules and income limits. It would put real money behind the direct care workforce too. The federal government would fully cover the cost of the services, plus wage requirements for the people doing the work. Direct support professionals everywhere should be paid like the skilled workers they are. If this bill passes, more people get access, and more of the people providing that access get paid decently. None of that is small.

What the HCBS Access Act doesn’t do is give us a right to live in freedom, and it doesn’t touch the fundamental alteration defense. The fundamental alteration defense is the mechanism a state uses, right now, to tell someone that they can’t get community-based services because providing them would fundamentally alter the state program. It’s an escape hatch built into Olmstead itself. If a service doesn’t exist, the state has no obligation to create it. For over two decades this defense has let states deny services to the people whose needs are hardest and most expensive to meet, including DeafBlind people, people who need round-the-clock support, people like Elena on the day her mother finally can’t assist her anymore.

So, the HCBS Access Act widens the front door but leaves the back door – the one to forced institutionalization – wide open. Exactly as it’s always been. Worse, the newest version of the HCBS Access Act adds assisted living to the list of guaranteed services with no requirement that a person receive a more integrated and individualized option first. That’s not some long-standing wrinkle critics are only just noticing — it’s new to this version of the bill. And when a workforce shortage meets an unguarded congregate-care option, the people who end up defaulted somewhere they didn’t choose are, predictably, people with the most significant disabilities. That means the HCBS Access Act could force people into congregate facilities!

Access without protection isn’t freedom. It’s a just longer line to the same place.

There’s a legal fragility here too. The bill’s integration promise is written as a cross-reference to the existing federal HCBS settings rule (42 C.F.R. § 441.710(a)) rather than its own statutory language. That specific regulation wasn’t the one vacated in Texas v. Kennedy. But DOJ just joined a lawsuit to strip the parallel integration-mandate definitions out of a neighboring regulation, and a court granted it in a matter of weeks. That’s the same agency that would have to defend 441.710 if someone came after it next. A bill built on a regulation surviving intact isn’t a safe bet when the agency that owns the regulation just showed it’s willing to ask a court to gut one like it.

And there’s a durability problem separate from all of that. The HCBS Access Act is a spending program, built on an open-ended, expensive new federal Medicaid entitlement. Spending programs live and die by budget reconciliation and a simple Senate majority. What fifty-one votes create, fifty-one votes can shrink, cap, or kill. Advocates who’ve watched this happen before aren’t eager to build the future of Olmstead protection on that kind of foundation.

The Latonya Reeves Freedom Act was built for the actual emergency

Latonya Reeves fled a Tennessee nursing home to get free and built a life in Colorado that Tennessee never offered her. The bill carrying her name isn’t a Medicaid financing bill — it’s a freestanding civil rights statute, closer in structure to the ADA or Section 504 than to anything in Title XIX. It was introduced in this session days after the OLC memo dropped, by people who knew exactly what was under attack.

Where the HCBS Access Act guarantees that a service exists, the Freedom Act bill guarantees a judicially enforceable right to receive long-term services and supports in the setting of one’s choice, and it reaches a broader group of people to do it. Instead of a functional-impairment test layered onto Medicaid financial eligibility, it covers anyone with an “LTSS disability” — someone who is, or may become, institutionalized — regardless of disability type, regardless of Medicaid eligibility, regardless of income. Someone the HCBS Access Act would screen out on financial grounds is still covered here.

It also goes after the fundamental alteration defense directly, and doesn’t just narrow it. It eliminates it. The integration right is written straight into civil rights law rather than borrowed from a regulation, so it’s insulated by design from the kind of exposure that just played out in Texas v. Kennedy, where DOJ itself asked a court to vacate integration-mandate language from a related regulation.

The practical difference is simple. Civil rights statutes need sixty votes in the Senate, and Congress has never reversed or repealed civil rights legislation once it passed one. A spending benefit can be undone by whoever holds power next, and a regulation, this case just showed, can be undone by the same agency that wrote it. Direct federal cost is modest too, since a rights-and-enforcement statute doesn’t carry the open-ended entitlement price tag or the 100% federal payment that the HCBS Access Act does.

The Freedom Act puts control with the Disabled individual instead of a medical professional, eliminating the requirement that a treating professional sign off before someone can access community-based services. Nobody needed a doctor’s permission to institutionalize a person by default. It shouldn’t take one to keep or get them home.

It defines instrumental activities of daily living to include the “care of others”, something the other bill never mentions. Not just a person’s own basic needs, but their ability to raise children or have a pet. One bill treats a person as a patient who needs care. The other treats to them as a full person who wants and deserves a full life.

The Freedom Act is more honest about congregate placement, too. The HCBS Access Act adds assisted living with no integration hierarchy, so nothing stops a state from steering someone there instead of home, or being pushed into a congregate setting because of a workforce shortage exacerbated by a massive expansion of eligibility. The Latonya Reeves Freedom Act treats institutionalization and congregate placement as harms to be remedied, while still leaving them available for people who genuinely want that as an option.

And the Freedom Act addresses housing directly, requiring access to integrated housing options that aren’t tied to a person’s services and supports. The HCBS Access Act’s housing provisions cover only transitional and homelessness-related support. That’s narrow, and it says nothing about the tenancy arrangements that can trap someone in a living situation they didn’t pick or the loss of control when your service provider is also your landlord.

That’s the difference between a bill that expands a benefit and a bill that repairs and strengthens a right. Disabled people need both, but if they only get one, they need the one that stops the floor from collapsing, not the one that adds more people standing on it.

It’s also worth noting which bill has actually built the coalition to pass. The Latonya Reeves Freedom Act has twice cleared a majority of the House as cosponsors — 236, then 220 — with Republican support in every version of the bill. Part of how it got there was by leaving out the pro-union labor provisions the HCBS Access Act carries. The HCBS Access Act, by contrast, has fifteen Democratic cosponsors this Congress and has never drawn a single Republican, in this version or any prior. One bill was built to pass. The other was built to be popular with people who were already voting for it.

The Democrats’ own health care wishlist makes the point better than this piece can

Last week, POLITICO shared an 84-page health policy agenda a working group convened by House Minority Leader Hakeem Jeffries had drawn up for a Democratic majority, should the party win the House in November. It’s ambitious. The group — co-led by Alexandria Ocasio-Cortez, a Medicare for All supporter, and Terri Sewell, a more moderate colleague who hasn’t endorsed it — met with 139 caucus members, over 60 percent of House Democrats, and took input from 145 outside groups: patient advocacy organizations, trade associations, hospitals, physician groups. “Undoing H.R. 1 is the floor, but not the ceiling,” the memo says, referring to the Trump megabill that cut Medicaid by nearly a trillion dollars. Past that floor, it calls for reining in corporate monopolies, building a more “durable healthcare system,” and pursuing what it calls an ambitious path to universal coverage — all without the caucus settling on Medicare for All, which shows up as one option among several rather than a consensus position.

One person familiar with the memo, granted anonymity to speak candidly, described it as “a kitchen-sink-type document where everyone got their idea put in. Nobody was told no, it seems.” The contents back that up. It includes hospital price parity with physicians, reversing Medicare’s declining pay to doctors, new medical residency slots, removing Trump-era caps on nursing and medical student loans, wider access to clinical trials, EpiPen price caps, eliminating medical debt, doubling community health center funding, capping health costs at 8 percent of income, restoring the ACA premium tax credits Congress let lapse, and a months-long push by Ocasio-Cortez to win over voters put off by RFK Jr.’s Make America Healthy Again movement — reversing his vaccine skepticism while borrowing his anti-corporate, anti-glyphosate message to pull those voters toward Democrats. (Even my head is spinning!)

One line in that document belongs to Elena’s world. A proposal to create a Social Security long-term care insurance benefit. It’s the only item in eighty-four pages that speaks to the crisis this piece is about, and it gets no more space than the residency-slots line two above it. The fundamental alteration defense doesn’t appear anywhere in the memo. Neither does Olmstead, Texas v. Kennedy, or the integration mandate. Disabled and elderly people aren’t named as a constituency with something urgent at stake. Long-term services and supports shows up as one bullet point in a kitchen-sink document built mostly around insurance costs, provider payment rates, and winning back voters drawn to vaccine skepticism and food politics.

None of that is a knock on the proposal itself — a Social Security long-term care benefit, done well, matters a great deal. But it says something about where this crisis sits on the party’s own list of priorities right now. It clearly isn’t seen as urgent, and their document fails to recognize the legal fight playing out in federal court this year. A working group that met with 139 members of Congress and 145 outside groups produced real, sometimes bold ideas on hospital pricing, drug costs, reproductive health, and vaccine politics, while failing to produce anything close to the civil rights framing in the Latonya Reeves Freedom Act.

Democrats are fighting for unions and insurance companies. Who’s fighting for Disabled and elderly people?

None of this is an argument against the individual pieces of the Democratic health agenda. Capping EpiPen prices matters. Extending ACA subsidies matters. Ending medical debt matters. So does winning back voters the administration’s health policy has alienated, if Democrats want a majority at all. The labor provisions in the HCBS Access Act matter too.

But when the emergency facing the Disability Community is a live legal threat to whether Disabled and elderly people get to stay in their own homes, and the most ambitious health policy document the party’s own leadership has produced — one that reached over half the caucus and nearly 150 outside groups — mentions that emergency exactly once, in a single unelaborated line, the priorities have gotten turned around somewhere.

The Latonya Reeves Freedom Act didn’t come out of that working group. It came out of decades of work by Disabled organizers, many of them the same ADAPT activists – like me – who saved Obamacare in 2017 and have been showing up on the Hill for decades, refusing to let this fight get folded into the general healthcare conversation, where it reliably loses to bigger, better-funded interests. That refusal is why the bill has had the cosponsor numbers it has. It’s also why the Freedom Act still doesn’t get the kind of institutional backing from Democratic leadership that a Medicaid provider-tax fight or an ACA subsidy fight gets as a matter of course — and why it’s absent from an 84-page agenda built specifically to set the party’s health care priorities for the next Congress.

Freedom for Disabled and elderly people shouldn’t be the thing Democrats get around to once the insurers, the unions, and the MAHA-curious swing voters are all squared away. It should be near the front of the line, not instead of those other fights, but ahead of them. For someone like Elena, it isn’t one health care priority among many. It’s the whole question of whether she keeps living in her own home.

This is a disability justice question, not just a policy one
Disability justice as a framework came out of Disabled People of Color and Queer Disabled organizers who understood something mainstream disability advocacy, and mainstream party politics, tend to forget. Solidarity isn’t proven by who you claim to be fighting for. It’s proven by whose most urgent needs actually shape what gets built.
The attack on Olmstead threatens people at risk of institutionalization. That’s the emergency. So when a bill responds by expanding eligibility to a much wider population — including plenty of people who, under most states’ current standards, were never at risk of institutionalization to begin with — while leaving the fundamental alteration defense untouched and adding a congregate-care option with no integration hierarchy, it’s fair to ask who the response is actually for.

It’s a pattern disability justice organizers have been naming for years, inside single bills and inside entire party platforms. The most urgent crisis becomes the rallying cry, and then the response built in its name spreads across a much wider group, or gets pushed down the list behind bigger coalition interests, while the people the crisis was actually about get told, gently, to wait for the next bill, the next working group, the next Congress. That’s not solidarity. That’s marginalization and oppression.

Nobody who worked on the HCBS Access Act set out for that to happen, and nobody on Jeffries’ working group actively decided Disabled and elderly people matter less than insurers or unions or MAHA-skeptical voters. Good intentions and bad sequencing can land in the same place for the Disabled person still waiting on the list – or the nearly two million of us who are locked away.

What Disabled and elderly people are actually asking for

Advocates want home and community-based services funded like the essential infrastructure they are. We want the workforce shortage actually solved, because it’s real, and it’s the reason a congregate option starts looking tempting to a state balancing a budget it doesn’t recognize is also somebody’s life.

But before any of that, we need the floor fixed. We want the fundamental alteration defense gone — it’s the specific tool being used against the exact people this attack is targeting. We want a right they can take to federal court ourselves, not a benefit riding on an agency that’s already said it’s looking away, and not a spending program a future Congress can zero out in reconciliation. We want the Latonya Reeves Freedom Act, and we want Congress to stop treating the HCBS Access Act as though it does the same job, because conflating the two lets Congress feel like it answered this emergency without actually shutting the door to institutionalization that’s still wide open.

And we want Democratic leadership to say plainly that Disabled and elderly people’s freedom isn’t a line item buried in an 84-page memo. It’s not beneath Medicare for All. It’s not beneath the unions or the insurance markets or the fight for MAHA voters. It belongs in the same conversation as all of those fights, but right now, it’s more urgent than most of them. It belongs in the same conversation that the party is having about the rights of other marginalized people.

To live in freedom, Disabled people need services, but expanding services on top of a collapsing legal foundation isn’t safety. Give us the right to live in freedom. The right that almost every other person in the country can take for granted, but is denied to people with the most significant disabilities. Give us that and the rest will follow.

Here is a document that compares the Latonya Reeves Freedom Act and the HCBS Access Act.