Sixty years of promises and the crisis they built

In 1961 Ruth’s brother went into a state institution because there was nothing else. In 2019 Ruth’s son finished school and went onto a waiting list because the thing that was supposed to replace state institutions was never actually built. Ruth is 74 now. She has watched the American disability system fail her family twice, in opposite directions, across six decades, and she can name every decision that did it. Most families cannot, and that is not their fault. Nobody teaches this. So let me.

Here is my central claim, and everything below is the evidence for it. Nobody designed the crisis your family is in. It was assembled, one reasonable decision at a time, by people mostly trying to fix the previous generation’s disaster. That makes it harder to be angry at any single villain. It also makes it entirely reversible, because a system built by legislation can be rebuilt by legislation.

1955 to 1963: the promise

In 1955 the population of American state psychiatric hospitals peaked at 558,922 people. Warehouses, most of them. Conditions that generated exposes, lawsuits, and genuine national shame.

In October 1963, weeks before his assassination, President Kennedy signed the Community Mental Health Act. The bargain was explicit: close the institutions, and build a national network of community mental health centers to receive the people leaving them. Roughly 1,500 centers were envisioned.

The closing happened. Between 1970 and 2014 the resident population of state psychiatric hospitals fell from about 370,000 to roughly 40,000. The building did not happen at anything like the promised scale. Federal funding for the centers eroded across administrations, then was block granted in 1981, and the promise quietly stopped being a promise.

That is the original broken deal, and everything after it is downstream. We emptied one system without finishing the other, and then spent sixty years improvising.

1975: the entitlement that stops at the school door

Congress enacted the federal special education law in 1975, guaranteeing a free appropriate public education to children with disabilities. It was transformative, and it remains one of the genuinely great pieces of American civil rights legislation.

It also created the cliff. For eighteen or twenty two years, depending on your state, your child has a federally enforceable right to services, an individualized plan, a due process system, and a school district legally obligated to deliver. Then, on a specific Tuesday in June, all of it ends at once and there is no adult equivalent. No entitlement. No plan the law requires anyone to fund. A waiting list.

I have never found evidence that Congress in 1975 debated the adult side and decided against it. It appears simply not to have been the question in front of them. Sixty years later, that omission is the single most brutal fact of adult autism services in this country, and it still has not been addressed by any enacted federal law.

1981: the decision almost nobody knows about

If you take one year from this post, take this one.

In 1981 Congress created Section 1915(c) of the Social Security Act, authorizing states to waive certain Medicaid requirements in order to provide home and community based services as an alternative to institutional care. This was, and is, the mechanism that funds nearly everything your family relies on.

It came with a permission that institutional care never received. Under a 1915(c) waiver, a state may cap the number of people served. It may operate a waiting list. It may leave an eligible, medically qualifying person unserved indefinitely without violating federal law.

Nursing facilities have no such permission. If you qualify, you are entitled, and no state may make you wait.

So in 1981, in a provision written to expand community care, Congress built the waiting list into the statute. In 2025, more than 600,000 people sat on Medicaid HCBS waiting or interest lists across 41 states, waiting an average of 32 months, and 37 months if they had an intellectual or developmental disability. Not one of them is waiting because of a court order or a funding accident. They are waiting because in 1981 the law said states could make them.

1990 and 1999: rights without dollars

The Americans with Disabilities Act passed in 1990 with an integration mandate. In 1999 the Supreme Court decided Olmstead v. L.C., holding that unjustified institutional segregation of people with disabilities constitutes discrimination under the ADA.

Olmstead is the most important disability rights decision in American history. It is also the clearest illustration of what a right without an appropriation is worth. The Court’s holding came with a qualifier allowing states to consider available resources and the need to maintain a range of services, and states have spent twenty seven years reading that qualifier expansively.

Enforcement fell largely to the Department of Justice and to private litigation, family by family, state by state. Michigan’s own Waskul settlement is a 2025 example of what it takes: years of federal litigation to establish that self-determination budgets have to be adequate for what a person actually needs.

Rights you have to sue for are rights only available to people who can find a lawyer.

2014 to 2023: the ground shifts under everyone

CMS issued the HCBS Settings Rule in 2014, requiring that home and community based settings actually be integrated rather than institutions with different signage. Correct in principle. In practice it triggered years of heightened scrutiny reviews, provider exits, and the closure of programs that families relied on, with replacement capacity that in many states never materialized.

Autism prevalence rose steadily across this period. The population needing adult services grew every single year while adult service capacity did not.

Then 2020. A field paying near minimum wage for physically and emotionally demanding work lost its workforce to every employer that raised wages during the pandemic, and it has not recovered. This is where the crisis stopped being about eligibility and started being about whether anyone shows up.

2024 and 2025: the compounding

Michigan formally eliminated prevocational services from the Habilitation Supports Waiver in the October 2024 renewal, with a transition to skill building and out of home non-vocational habilitation. Whatever you think of the policy rationale, the practical result for many Level 2 and Level 3 adults was a program that used to exist and now does not.

In July 2025 Congress enacted the largest federal Medicaid reduction in the program’s history, roughly $911 billion over ten years by CBO’s estimate for the enacted package, landing on a program where community services are optional and institutional services are not.

Sixty two years after Kennedy signed the Community Mental Health Act, the federal government still guarantees an institution bed and still does not guarantee a support worker in your kitchen.

Why the history is a weapon

Here is why I made you read all of that.

When you walk into a legislative office and say the system is broken, you get sympathy and nothing else, because “broken” is not actionable. When you walk in and say that Section 1915(c) permits enrollment caps that institutional care never faced, and you are asking your member to cosponsor the HCBS Access Act because it removes that asymmetry, you have said something a staffer can write down.

Ruth’s family got failed twice by two different mechanisms. Her brother by the absence of any alternative to institutions in 1961. Her son by the rationing built into the alternative in 1981. Those require different fixes, and until you can name which one has your family, you are asking for sympathy instead of legislation.

At every decision point, different choices were possible. Congress could have extended the education entitlement past 22. It could have written 1915(c) without enrollment caps. It could have funded Olmstead. None of this was weather. It was votes, and votes can be taken again.

Now we know what we are fighting.