I want to start with a building. Brick, multiple stories, somewhere between a hospital and a school, designed to look like it was helping. There is one in almost every state. Some are still standing, some are apartments now, some are rubble. But the decisions made inside them are still running. You can see them in your IEP, hear them in every provider voicemail, and read them in the language your insurance company uses to deny a claim.
No one handed you a history book in the waiting room. So here is the tour they skipped.
The first buildings
The first institution for people with what we now call intellectual and developmental disabilities opened in Massachusetts in 1848. The man who ran it genuinely believed people could be educated and returned to the community. Within 50 years, these buildings stopped being schools and started being warehouses. Words like idiot, imbecile and moron were not insults. They were legal classifications written into state law.
Eugenics and Buck v. Bell
By the early 1900s eugenics was mainstream science and mainstream politics. Indiana passed the first sterilization law in 1907. More than 30 states eventually passed some version, and more than 60,000 people were sterilized under them. Some states kept doing this into the 1970s.
In 1927 the Supreme Court upheld it in Buck v. Bell. Carrie Buck was 17 when she was committed in 1924. Her school record says she was an average student. Her own attorney called zero witnesses. Her daughter Vivian made the honor roll in 1931 and died in 1932 at eight years old. Buck v. Bell has never been explicitly overturned.
The buildings changed, the paperwork changed. Some of the language changed. The architecture of control did not.
Willowbrook
Willowbrook State School opened on Staten Island in 1947, designed for about 4,000 people. By the mid 1960s it held more than 6,000. Its own reports documented overcrowding, staffing that made individual care impossible, and residents left with no education or therapy. In 1972, a local news reporter named Geraldo Rivera got inside.
The debate inside ABA
If anyone in the field tells you there is nothing to debate, they are not being truthful with you. The BACB overhauled its code around assent: not just consent from a parent on an intake form, but assent from the kid in the room, in real time, including the right to pull away before they can say a word. The old model presented a demand and ran the trial again until compliance. The assent based model treats pulling away as information, not defiance. I have watched both versions run in real rooms. They produce completely different sessions.
ASAN's position is that the underlying goal of shaping autistic behavior to look more typical is the problem, however gently it is done. Reform researchers argue that practice done correctly today, with real assent, is a genuinely different thing. Both deserve to be heard.
The Judge Rotenberg Center
The Judge Rotenberg Center in Canton, Massachusetts has used a remote controlled electric shock device on disabled students as punishment. The FDA banned that use in 2020, a court overturned the ban on a technicality in 2021, Congress closed the gap in 2022, and the FDA proposed a new ban in 2024. As of recording, it had still not been finalized. The building does not have to be called an institution to function like one.
Closing the building is not serving the person
The population in large state institutions peaked at 154,638 in 1977 and fell to 52,488 by 1998. Closing them was the right thing to do. But "we closed the building" and "we served the people" are not the same sentence. What we built instead, in many places, was a waitlist.
Why the words matter
Rosa's Law, signed in October 2010, replaced "mental retardation" with "intellectual disability" in federal law. It was named for Rosa Marcellino, a girl from Maryland with Down syndrome, whose family pushed for the change. Her brother Nick was 11 when he testified that what you call a person is how you end up treating them. A 2023 survey in the journal Autism found autistic adults preferred identity first language, "autistic person," by 87% to 13%, while many professionals still default to person first language.
What this has to do with your family
Six providers who have never met. A school plan and a therapy plan that do not reference each other. That is the legacy of deinstitutionalization without coordination. You became the coordinator. Nobody gave you that job title, and you are not paid for it.
The BCBA knows behavioral goals, the SLP knows communication, the OT knows sensory and motor goals, the school team knows the IEP. Nobody in charge is asking what this family actually needs, or whether all the goals are moving in the same direction. None of this is your fault, and none of it is your child's. It does not have to keep being this way.
Next step
Want one table instead of six separate plans?
You became the coordinator because nobody built the coordination. A care mapping call is where we start building it around your child.
Book a family care mapping call Agency leaders: book an agency callAshleigh Dominguez, MS, BCBA, is licensed in North Carolina, Georgia, and Iowa. This article is general education based on the episode. It is not clinical, legal, or treatment advice for your child or your state. Corrections and sources are listed in the YouTube description.