New Trump DOJ Memo Alarms Disability Advocates With Threat of Forced Institutionalization​

Medical Institutionalization in the US: A Grim History

The Americans with Disabilities Act (ADA) and the Olmstead Decision did not materialize out of nowhere. They were the result of tireless advocacy stemming from horror stories by the thousands of patients who endured grotesque abuse in institutions such as state hospitals, asylums, sanitariums, state schools, and isolated disease wards. 

For roughly 200 years in the US, intellectually disabled people in particular were removed from their homes and segregated into large, often state-run and public institutions such as the Willowbrook State School, the Pennhurst State School and Hospital, and the Danvers State Hospital.

These institutions and many others gained infamy due to overcrowding, abuse of the patients, including routine beatings and even sexual assault, social isolation, and an overall environment of dehumanization and a lack of care. And the US medical institution did not limit these abuses to the intellectually disabled alone. Patients with physical disabilities like the deaf and the blind, women, and enslaved people have also been institutionalized and medicalized by the American Psychiatric field for defying social edicts, traditions, resisting gender roles, or daring to resist the institution of slavery.

One event that began to turn public opinion against these institutions was the famous exposé, “10 Days in a Madhouse,” published in 1887 by journalist Nelly Bly. In a fearless act that would go on to establish the field of investigative journalism, 23-year-old Bly feigned insanity and had herself committed to the infamous Women’s Lunatic Asylum on Blackwell Island in New York City.

Bly quickly learned that most patients in the women’s asylum were not mentally ill or disabled at all but simply poor or immigrants who were swept up in a cruel and unjust legal system. She also discovered that the treatment of the women was far worse than even the most salacious rumors swirling around the city implied. From beatings, freezing baths, and rotted food to threats of sexual violence, the women of the asylum received deeply inhumane treatment. After Bly’s release, her book, detailing her and others’ experiences, became a sensation, and led to widespread public outcry for better treatment of asylum patients across the nation.

Yet, despite this landmark publication and growing public opposition, the United States continued the practice of committing mental health and intellectually disabled patients. At its peak in the 1950s, some 560,000 patients were institutionalized.

What moved the nation away from this system of care was not a single event but a series of converging factors, including growing public opposition, the development of the disability rights movement, and the creation of Medicaid.

Comparing Patient Outcomes and Cost: Community-Based Care vs Institutionalization for Disabled Patients

When discussing healthcare policy issues, it’s important to use the tenets of evidence-based practice and evaluate the data available. When evaluating the efficacy of committing disabled patients to institutions, two critical questions emerge:

1. Which setting produces better patient outcomes for disabled patients?
2. Which setting is more cost-effective?

One man studying those questions is Dr. Angelo Brown, an Assistant Professor of Criminology at Arkansas State University. Brown’s career researching the criminal justice system in the US has provided a clear answer for both questions when it comes to those with mental illnesses: community-based care is demonstrably less expensive than institutionalization for people with mental illness and produces better patient outcomes.

Brown says he began studying disability unexpectedly in his work as a criminologist because so many people in US jails and prisons suffer from significant mental health issues. According to The Bail Project, people with mental illness in the US are more likely to be incarcerated than hospitalized, and the three biggest mental health facilities in America are jails.

Much as in Nelly Bly’s time, many people experiencing mental illness today end up incarcerated for no other reason than the fact that they are poor and have not been given the resources to succeed. “Many people with disabilities, especially those with mental health issues, end up in prison or in jail. 50 percent of prisoners in my local area, for example, have at least one serious mental health condition. People with common mental health issues like ADHD, who go unsupported for years, often end up in jail. And that inevitably makes their mental health even worse,” Dr. Brown says.​

Not only do disabled people fare far worse after a stint behind bars, but the cost to taxpayers is enormous: “Since 2005, we have known that [institutionalization] was costing a lot with no benefit to public safety or the well-being of mentally ill and actually reduced both since people are worse off when they are released.”

According to Brown, more recent data like that presented in the study, “Economics of decriminalizing mental illness, when doing the right thing costs less,” shows that inpatient mental health care for a state prisoner can be as high as $550,000 per year. At the same time, that same patient could receive community diversion care for $35,000, or local home care under community integration programs for $29,120 per year.

And that pattern remains when you look at care services for disabled patients across the board.

A study by Sheth et al, “Satisfaction, safety, and supports: Comparing people with disabilities’ insider experiences about participation in institutional and community living,” showed that disabled people report significantly higher satisfaction, feelings of personal safety and security, ability to make choices about daily activities, and better access to care in the community compared to institutions.

Another study, “Disparities in Quality of Life Outcomes and Quality of Supports among People with Disabilities Who Receive Home- and Community-Based Services (HCBS),” found that disabled people living in small residential community settings had better health outcomes and higher rates of satisfaction than provider-operated facilities.

Overall, the research shows that people with disabilities who are institutionalized experience a lower quality of life, report lower satisfaction, lower autonomy, and the cost is significantly higher than if they lived in an appropriate community-based setting for their needs.

A Hopeful Alternative to State Care: Abe’s Story

One person who understands the dangers of institutionalization intimately is Jessie Mathieson. Today, she is Abe’s full-time caregiver, but that wasn’t always the case. Abe has cerebral palsy and is level 3 autistic, and he spent 12 years living in a state-run group home for people with intellectual disabilities.​

During his time in the group home, Abe was frequently hospitalized with bouts of pneumonia and other infections, and his health declined sharply.

Years ago, Mathieson was home visiting from college, and Abe was once again hospitalized for sepsis. Concerned, Mathieson started taking a more active role in his care whenever she could.

At the time, Abe was on a strong cocktail of 15 different medications, including antipsychotics and sedatives, and she began to wonder if all those strong medications were causing some of his health issues. At his sickest, the 5”11 Abe weighed only 85 pounds and almost died, and that’s when Mathieson decided she needed to take drastic action. After graduating college and returning home to Maine, Mathieson removed Abe from the group home and became his full-time caregiver.

“Abe is very active, and I believe they were sedating him because they just couldn’t keep up with him,” Mathieson says.

Over time, working closely with his doctors, Mathieson was able to wean him off of most of his medications, and his symptoms improved greatly. Today, Abe is a healthy weight and living a big, full, happy life at home with his family in his community.

Unfortunately, not every story has a happy ending. Abe’s best friend from the group home, Luke, died one year after Abe left, declining and ultimately passing away from the same group of symptoms and conditions that Abe experienced. Mathieson firmly believes his death could have been avoided if he were living in the community setting with adequate caregiving and personalized attention that is so difficult to provide in group homes and other institutional settings.

“Disabled people are valuable human beings, and they deserve the right to the care that keeps them in their communities. [This memo] will take us back to the horrific scenes from the past that disabled people suffered in institutions,” Mathieson says.

“For the US government justice department to say, ‘We are no longer going to enforce the Olmstead decision,’ they are saying they are no longer enforcing one of the most critical cornerstones of disability rights that has been won in the past 50 years. And when the federal government says they are no longer enforcing laws, that means that the most marginalized across the country are going to be harmed the most for any state that wants to harm and dehumanize them.”

Integration Benefits Everyone: The Curb-Cut Effect

One of the ironies that disability justice advocates often point out is the reality that most people will become disabled in some capacity, at some point in their lives. Yet, they often struggle to get public support for disability rights legislation or support their other efforts.

You need only look around your own community to see the incredible benefits of disability deinstitutionalization and integration. Consider the curb cut.

Curb cuts are the part of the sidewalk at intersections and road crossings that slope gently downward and create a seamless ramp for wheelchair users. But they don’t just benefit wheelchair users. They also help parents pushing strollers, delivery people pushing dollies, and business travelers pulling wheeled luggage.

This Curb-Cut Effect demonstrates how disability integration and accommodations benefit all of society, not just people with disabilities. Mathieson summarizes it clearly, saying, ”There are thousands of ways that integrating disabled people into society has benefited everyone. Disability accommodations like curb cuts, closed captioning, audiobooks, or automatic doors, to name a few, have made life easier and better for all, even if you don’t realize it.”

We Won’t Go Back

For hundreds of years, disabled people, including those with intellectual and physical disabilities and mental illnesses, languished in overcrowded institutions that traumatized them and failed to meet even their most basic needs. Today, through a multi-pronged campaign of removing essential staff and slashing programs and their funding, the Trump Administration seeks to drag disabled people back to that asylum era.

Dr. Brown says, “This new memo violates disabled people’s rights. To force someone into a facility against their will is to strip them of all their rights and autonomy, and it’s just not the right choice or necessary for the vast majority of people.”

Dr. Cameron urgently appeals to her nursing colleagues and calls for all healthcare workers to take an active role in defending the rights and services disabled patients and coworkers rely on: “This memo is a direct threat to disabled people, and that includes your disabled healthcare colleagues.”

While this latest DOJ memo is demoralizing for many disabled Americans and disability advocates, their commitment to resistance is strong, and the overwhelming sentiment they share is clear: we won’t go back.