In the last few decades, the world has made amazing strides in mental illnesses. And our “cures” for mental illness have become much more humane. There was a time when the typical mental hospitals looked a lot like a horror film, except that it was all real. But better drugs and a better understanding of how the brain works allowed us to shut down these bad places and let the patients out. And that was a good thing. Except. Maybe. For adults with Intellectual Disabilities.

Try to understand what it was like in the last century. We had mental institutions and prisons for the insane. There were violent crimes by people whose brains didn’t work right. There were no cures. For a very long time, there wasn’t even a hope that there would be a cure. Instead, a good administrator of a mental institution had one main goal. Don’t let the bad people out. If they got away, people would die.

Many of these institutions were essentially prisons. This is where the mentally ill would live and die. A good deal of these institutions were built in isolated places or surrounded by a dangerous environment. Like cliffs or fast-moving water. Today you would never put ill people near dangerous environments where they could get hurt. Back then, if anyone got away you wanted the environment to contain or kill escaped inmates.

A lot has changed since then. Including patient rights. Clearly, old-style institutions were neither gentle nor welcoming. There were a few exceptions, but for the most part, inmates were abused. Sexually, financially, physically… in every way possible. That’s why there was a movement in the 1960s (continuing to this day) to De-Institutionalize, and close down old-style institutions. Which was a good thing. Most of the time.

The problem is that this way over simplified the problem. Yes, these institutions were filled with dangerous people, but also people who were just swept up and placed in these institutions when other forms of care would have been far more effective. And then new drugs were released that could finally help the most dangerous and psychotic inmates. New diagnostic equipment even allowed us to peer into the working brains of patients to understand what was going wrong.

The focus of the de-institutionalization movement was psychosis. Mistakes were made, like dumping patients onto the streets of major cities, creating the homeless crisis that afflicted America in the 80s & 90s. Another key mistake was to treat all patients alike. Institutions housed more than just the dangerously ill.

When de-institutionalization was just starting up, the world had barely heard of Autism, Cerebral Palsy, Tubular Sclerosis (TCS), traumatic brain injuries (TBI), and other intellectual disabilities. Unlike psychotic patients, individuals with intellectual disabilities are not at particular risk to become violent, although many will experience violence and sexual assault. Intellectual and Developmentally Disabled individuals (IDD) may also have significant physical disabilities that prevent them from living independently.

However, de-institutionalization is still an active force in healthcare. Everyday, more and more psychiatric beds are being reduced. In 1950, there were 340 public psychiatric beds per 100,000 population. By 2005 it was 17, by 2010 it was just 11. Even worse, a full half of these beds are claimed by the criminal justice system. They need the beds to hold recent prisoners for psychiatric valuations and temporary holding.

A severely IDD individual might get a bed, but only after competing with mentally ill homeless, methamphetamine addicts, and victims of the opioid crisis. A recent Harvard White Paper indicated that the few facilities that can accept IDD patients have waiting lists that are more than 15 years long. By one count, the U.S. needs an additional 123,300 psychiatric hospital beds to alleviate the shortage. As more facilities close, that shorage will only grow.

This wasn’t exactly how de-institutionalization was supposed to work. The idea was to close abusive institution and (with the help of modern medicine) let patients move out into the community and live a better life. But this model just doesn’t work for severely disabled IDD adults. Why?

  • Funding: While the closing of bad, old institutions should be applauded, funding for new institutions has been lacking. In fact, since the 1970’s the amount of Federal funding for all types of low-income housing has been dramatically falling. Funding is down 65%, and money to repair existing housing has fallen by another 50%. There wasn’t enough housing money before deinstitutionalization, and there is even less now.
  • Employment: Even low-income housing assumes that you can pay rent. Of individuals aged 21-64, without disabilities, 83% participate in the workforce. Only 44% of similar IDD adults participate in the workforce, with 28% that will never be employed. Of course, even when the disabled are employed, they tend to make far less than their non-disabled counterparts.
  • Services: When a IDD child becomes an IDD adult, the primary source of services and activities goes away. At 21, most “childhood services” cease to be funded. First, a lot of childhood services were funded by the Department of Education. As adults, it splits into a numb er of new programs, most of which are chronically underfunded. That’s not surprising given that in the past few IDD lived into adulthood. The statistics have been slowly changing, and now IDD adults live into their 50s and 60s, but new programs have not been developed to address this new reality.
  • Increasing Need: Not only have IDD adults been living longer, but there are also far more IDD births today. The miracles of medical science that allow women to have children later in life also guarantees that more will have intellectual disabilities. (A woman who has her first child in her 40s is 12 times more likely to have a Down’s Syndrome child than a woman in her 20s.) Also, in 2004 only 1 in 166 children were diagnosed with Autism, while today the rate is 1 in 59, and climbing.

The number of IDD adults will continue to rise throughout this century, but there is little new activity in Washington to indicate that new programs will arrive any time soon. In fact, some interesting thinking as been coming from Harvard’s Kennedy School, specifically from Micaela Connery.

“We spend upwards of $77 billion a year on youth with disabilities in the U.S.,” Connery said. “We say we’re preparing them to be thriving adults, but then those opportunities for them to thrive — those jobs and independent homes we’re supposedly preparing them for — don’t exist. Adults with disabilities are often isolated.” In a recent White paper from Harvard, Micaela went on to say that parents are either creating private trust funds or turning to private foundations rather than waiting for a government-funded solution.

But there are a few groups that are trying to create a new generation of services. One in New York State is called “Nicky’s Gardens of Hope”. They are currently raising money to buy a site in New York State. They have very ambitious plans to set up a large community, with daycare, full residential services for IDD adults, and services for IDD families.

Do you have a child with IDD that will soon become an adult, or are you a professional in this field and want to learn more? You can contact them at https://nickysgardensofhope.com

They are looking for expertise, parental involvement, and (of course) funding. Maybe you can play a part in the next big thing in adult IDD services!