by Bruce Darling

For decades, disability advocacy has run on a familiar loop. A crisis hits. A waiting list grows. A provider closes. We organize, we testify, we ask for more funding for the program that just failed, and if we win, we celebrate. Then the next budget cycle arrives, and we start over.

That loop isn’t a failure of effort. It’s a failure of strategy. Programs and funding are things a legislature gives, and what a legislature gives, a legislature can take away. If we want change that lasts, we have to fight for something a budget line can’t erase: a right.

What a program can’t do
A program is a promise made annually. It lives in an appropriation, a waiver, a rate schedule, an agency’s interpretation of its own rules. It depends on who holds the majority, who chairs the committee, and how the revenue forecast looks in March.

Notice too who holds power under a program model. The agency decides who qualifies, how many hours you get, how long you wait, and whether you’re “appropriate” for the service. The Disabled person is subordinate. Even a well-funded program can leave you in that position, asking permission to live your own life.

And funding fights are zero-sum by design. When the ask is a bigger slice of a fixed pie, every win comes at somebody’s expense: one waiver against another, seniors against younger people with disabilities, providers against the people they serve. We spend our energy fighting each other over scraps instead of fighting the system that created the scarcity.

What a right does
A right flips the relationship. The person is the rights-holder, and the government carries the obligation. You don’t have to prove you deserve it this year. Someone else has to justify denying it.

A right also brings tools that funding requests never do: courts, civil rights enforcement, and the leverage of a legal claim. It’s no accident that the ADA and the Olmstead decision moved systems that years of budget lobbying hadn’t.

And rights are harder to strip. A program can be quietly defunded in a line item. Taking away a right means having an open fight in public, and losing that fight carries a political cost.

How we learned to accept the unacceptable
Here is what the program frame has quietly done to us. It has made denial normal.

Think about how we talk about insurance. A company reviews a request for home care, decides it isn’t “medically necessary,” and denies it. We treat this as a fact of life, like weather. We file the appeal, assemble the documentation, and wait, and we call that process. But look at what actually happened. A private entity with a financial interest in saying no made a decision about whether a person gets to live in their own home, and the burden of overturning it falls on the person least able to carry it. We have accepted that as the cost of doing business. We wouldn’t accept it for any other form of discrimination.

State budget fights do the same thing at scale. Every year, a governor or legislature proposes a cut to home and community-based services, and the debate that follows is almost entirely about dollars, the size of the gap, the growth in Medicaid, or the projection for next year. Somewhere in that conversation, the people disappear. The person who will lose their attendant hours becomes a line in a spreadsheet. The person who will be pushed toward a nursing facility becomes a “utilization trend.” The debate is about the budget, and the budget is never the one who has to live with the outcome.

And this is where the framing does its real damage. Someone who votes to cut these services gets a ready-made talking point – fiscal responsibility. They’re the adult in the room, making hard choices, protecting the taxpayer. Nobody asks them to say what they’re actually doing, which is denying people their freedom, deciding that a person should lose their home, their community, or their independence because the numbers didn’t work. Fiscal conservatism gives cover to what would be indefensible if it were described honestly. You can’t run on “I took away her ability to live in her own home.” You can run on “I balanced the budget.”

We helped build that cover by arguing on their terms. When we go to the legislature asking for funding, we accept that the question on the table is whether the state can afford us. Once that’s the question, denial isn’t a moral choice. It’s simple arithmetic.

New York’s CDPAP: the savings are the harm
New York gave us a live demonstration on this. CDR opposed this change from the start, and we documented the impact on consumers carefully.

In 2024, the state consolidated the Consumer Directed Personal Assistance Program under a single fiscal intermediary, Public Partnerships LLC (PPL), and the justification was almost entirely fiscal. Governor Hochul said spending was out of control. Two years later, the administration announced the changes were saving as much as $1.2 billion a year, more than double its original projection, and described the so-called reforms as putting the program on a path to long-term fiscal stability.

Here is what that number means. CDPAP is not a program where you save a billion dollars by working smarter. The state pays for hours of care that Disabled people use, and hours that aren’t used aren’t billed. When a program built on self-directed attendant services produces savings of that size, the arithmetic is not mysterious.

We know because the people running the transition told us so. In the run-up to implementation, CDR documented that PPL and the administration anticipated a percentage of Disabled people receiving services would “attrite,” a bloodless word for leaving the program of going without servics. We also knew what that would mean, because we had seen it before. In 2010, when Monroe County ended CDR’s fiscal intermediary contract, consumers were supposed to move to five other organizations. Many attendants didn’t follow. People with significant disabilities didn’t get the support they needed. Some lost their services and faced institutionalization. Some went without assistance, got sick, and were hospitalized. Some died. That attrition is the basis for some of the cost savings in the state budget.

The framing that carried this policy did its own damage. The fiscal intermediaries were labeled “middlemen,” which erased the work of the Disability-led organizations that built and refined this model. The public conversation about fraud leaned on stereotypes that Disabled people are inept and helpless and that personal assistants, who are primarily women of color, cheat the system. A cost-cutting measure got sold as a crackdown, and the people who paid for it were cast as the problem.

The federal government has since weighed in looking at the same numbers. In June, the Department of Justice sued the state Department of Health and PPL, alleging a sham bid process, misrepresentations about the transition, and a fee structure that let PPL take unauthorized profits, which prosecutors say erased any potential savings. The complaint describes untrained call center staff stranding callers, with average waits over an hour and 17 percent hanging up before they could register. PPL disputes the allegations. Set aside who is bringing the case. The point is that the savings claim and the harm are the same fact, seen from two perspectives.

That’s what the fiscal frame lets a state do. You announce a billion-dollar win and never have to say who paid for it. No one asks the governor to say, out loud, that the savings came from people who lost hours, providers, or the ability to direct their own care. “We balanced the budget” is a talking point. “We reduced care to people who can’t live without it” is not, but it’s the exactly what happened.

This is why CDPAP – as a program – was so easy to attack and cut. No enforceable right to community living or to consumer direction stood behind it. If it had, “attrition” wouldn’t be an efficiency. It would be a violation.

A rights frame refuses this trade. It changes who has to explain themselves. The question stops being whether the state can afford to do this and becomes whether the state can justify denying a person’s freedom. And that is a question that “fiscal responsibility” doesn’t answer.

The Latonya Reeves Freedom Act
This is the reason the Latonya Reeves Freedom Act (H.R. 9401 / S. 4865) matters, and why its framing matters as much as its content.

LRFA doesn’t create a new program. It says that every individual who is eligible for long-term services and supports has a federally protected right to be integrated into their community and receive those services there. It prohibits public entities and LTSS insurance providers from denying people who are eligible for institutional placement the community-based alternative, or otherwise discriminating against them. It directs the Attorney General to issue regulations and to investigate alleged violations. And it gives Disabled people themselves standing to go to court, with attorney’s fees available so that enforcement isn’t reserved for people who can afford a lawyer.

Read that list again. It names the insurers, not just the states. It treats a denial as what it is, discrimination, instead of a coverage decision. And every item is a mechanism for enforcing a claim. None of it is a grant application.

The bill is also named for a real person. Latonya Reeves lived in Memphis but couldn’t get the services she needed in her own home, so she moved to Colorado in 1991, where she could live without being institutionalized. She worked there as a transition counselor and community activist. Think about what that story says. She had to leave her home to have a life.

That’s the difference in one sentence. A program is something you access if your state offers it. A right is something you carry.

But doesn’t a right need resources?
Yes, and a strong version of this argument admits it. A right to live in the community means little if there are no attendants, no accessible housing, and no way to pay for either. A right without resources can become a slogan.

But look at the order of operations. Funding without a right can be cut in the next budget cycle, and when it is, the person has no claim. A right works in the other direction. Once someone has a federally protected claim to live in the community, the obligation to pay for the means of doing so stops being charity and starts being compliance. The right doesn’t replace the money. It’s what makes the money non-negotiable.

That’s why we should stop treating funding and rights as competing strategies. They aren’t. But one has to come first, and it has to be the one that can’t be zeroed out in a budget process.

What to do differently
When we organize a campaign, before we ask “what should they fund?”, we should ask “what right are we asserting, and who is obligated to honor it?” That question changes the frame, the coalition, the legal strategy, and the story we tell the public. It moves us from asking whether the state can afford to do this to asking whether the state can justify not doing it.

Programs come and go. Rights are what we hand to the next generation of Disabled people. That’s what’s worth fighting for.