jmdelano – UAB Institute for Human Rights Blog

Group Homes for People with Disabilities are Harbors for Abuse

By James DeLano

“I don’t feel safe here.”

That statement was uttered repeatedly in interviews performed by the Alabama Disabilities Advocacy Program (ADAP) with residents of Sequel Courtland, a psychiatric group home for boys in Courtland, AL. The residents of the home reported consistent patterns of abuse. One boy “reported witnessing a staff member lifting another resident up by the throat and slamming him to the floor.” Multiple boys reported being slammed into the ground and not being allowed to receive medical attention.

Sequel Courtland is a facility for boys. At the time the letter was sent in July 2020, there were “at least two transgender girls inappropriately placed at Courtland,” one of whom reported that she “is constantly touched, smacked on the butt” and that “they [other residents] try to watch me dress.”

At a Sequel facility in Owens Cross Roads that was part of the same investigation, “male staff repeatedly enter girls’ bedrooms and put them in violent containments.” At the same facility, residents were frequently ordered to sleep in common areas rather than in their bedrooms as a punishment. Staff also failed to report or make any attempt to prevent suicide attempts.

Sequel Montgomery practiced “Group Ignorance” as a punishment. Group Ignorance, or GI, involved staff and other residents completely ignoring the person being punished. The isolated person was unable to interact with peers in any way; just being within ten feet of another resident would be considered a violation. The facility’s then-current guidelines read that “They can participate with peers only during direct billable services—BLS and therapist-led group therapy.” One resident reported attempting suicide specifically because of the stress of being isolated under GI.

Sequel Tuskegee utilized a “time-out room” for up to days at a time as a means of controlling residents. There was no mattress present in the room; boys were required to move the mat from their bedroom into the confinement area. It also lacked a toilet or sink. Because of that, residents were forced to either try – and often fail – to gain staff’s attention to use the restroom or, failing that, “urinate in the corner of the room and clean it up later.”

A Sequel group home in Ohio was also investigated by that state’s protection & advocacy (P&A) agency, Disability Rights Ohio. They reported that one of the children living at that home told them he was “Put in a hold so strong that it almost broke my arm; they kept holding me tighter and tighter; my hands and arms were tingling and going numb.” Another said, “I don’t feel safe.”

Abusive group homes are not exclusive to Sequel. Group homes are often abusive, no matter what company owns them.

At a residential facility called Canyon Hills Treatment Facility in North Carolina, “at least one-third of residents lost weight after they were admitted for treatment.” Canyon Hills’ residents were children who should still have been growing. When residents asked for more food, their portions were cut even further. At another facility in North Carolina called Anderson Health Services, “Ten staffers at this facility have been charged with child abuse since 2017.”

At a group home in California, a woman with severe autism often went out on rides in the home’s van. She occasionally tried to stand up, after which “the staff member driving would slam on the brakes and, like, brake check her.” That practice caused bruises. The same woman, who had harmed herself in the past, was frequently left alone and unsupervised, during which time she banged her head into the wall, leaving large holes in the process.

Neglect in Group Homes

Many group homes are chronically understaffed. That, along with low pay and a lack of care from and proper training for staff, collectively leads to preventable injuries and death.

A woman choked to death at a New Jersey group home in 2017. She was unable to swallow large pieces of food; everything needed to be in small pieces, and she required supervision while eating. Two years prior, she had been taken to the hospital after choking on a bagel – an incident her family was never told about.

As a result of poor staffing, a resident of an Oklahoma group home named Terry Brown was strangled by his roommate. There was only one staff member on duty; when she intervened, she was attacked as well and “watched Terry’s body turn purple, go limp and fall lifeless.” At a group home owned by the same company, a resident drowned in 2011 on an outing. He was supposed to be wearing a life jacket. When he died, there was no life jacket for him to wear.

One Texas caregiver worked for almost 70 hours straight while caring for two disabled women; her only breaks were a short nap and a trip to run errands. She is the only caregiver for two women who require constant care and supervision. She was clocked in from 8:16 Tuesday morning to 10:08 Friday morning, and only four hours after clocking out she returned for another 19-hour shift. She said that, “I’m always here. The only thing I do for fun — besides sleep — is go to church, read my Bible, hang out with my family.” The only occasional help she has comes from equally understaffed and exhausted workers at other group homes. For her work – providing constant, necessary care to two people – she makes $9 per hour, which is a wage that is not uncommonly low and serves as one of many reasons group homes are so often neglectful.

At the previously mentioned Sequel group home in Courtland, Alabama, ADAP investigators found blood and feces on windows and floors. The same investigation had residents report insufficient and inadequate food and water, nonexistent education and medical treatment, and that “there’s mold in the showers, and rats and roaches in our bedrooms and the hallway.”

Physical and Chemical Restraint

Mental healthcare professionals generally agree that restraining someone who is in crisis only makes things worse. Many group homes do it anyway.

As part of the previously mentioned investigation into Sequel facilities in Alabama, numerous instances of inappropriate restraint were reported. A report compiling the results of several investigations by various state Protection & Advocacy Agencies (P&As) reads about an Alabama group home, “One boy described his head being caught on a nail in the wall during a restraint; another said he was picked up and slammed on his stomach onto the concrete. A boy who had visible gashes to his head said that facility staff had slammed him against a wall the previous night.”

In 2020, a 16-year-old boy was physically restrained by several staff members at a Sequel facility in Kalamazoo, Michigan, for twelve minutes. They used their body weight to restrain his torso and legs. He died two days later due to being asphyxiated while he was restrained. His name was Cornelius Frederick. In the 18 months preceding his death, emergency services visited the facility 237 times.

A group home in Carlton Palms, Florida has yet another pattern of restraints being used. Those restraints include cuffs, residents being strapped to chairs or being tied down, and straitjackets. These restraints directly cause physical harm – broken bones, bruises, and broken teeth, to name a few.

A box of Seroquel in front of a laptop. Source: Wikimedia Commons

Seroquel is an antipsychotic drug that is approved by the FDA to treat some severe mental illnesses. Seroquel does not have an immediate effect. It is not approved as a form of chemical restraint or as a treatment for insomnia or anger management, among other off-label uses, but that is what it has been marketed and used for. Disability Rights Tennessee, the P&A agency in Tennessee, reported that “In one facility, staff increased a child’s Seroquel dosage from 50 mg to 300 mg as an emergency intervention.” The same problems occurred in North Carolina; “staff had administered Seroquel numerous times to a child who did not have any diagnoses that would indicate use of antipsychotics.”

What Is Being Done?

Several of the group homes mentioned above have shut down since investigations into them concluded, including some Sequel group homes. Sequel changed its homes’ names to Brighter Path due to the negative press. In other cases, states have stopped sending children to abusive group homes or, rarely, revoked their licenses. Other group homes, while not yet shut down, are no longer receiving new residents or are being downsized.

Mental Illness in U.S. Prisons and Jails

by James DeLano

“I run the biggest mental hospital in the country.”

That was Los Angeles County Sheriff Lee Baca in 2005. He was referring to the fact that, in 2005, over 2,000 people in the county jail had been diagnosed with a mental illness. That has not changed. Nationwide, between 16% and 24% of incarcerated people have a severe mental illness. In the general population, 4% of people have these illnesses. Prisons are serving as replacements for psychiatric hospitals, but they are not changing to accommodate that.

In the 1840s, people with mental illnesses were generally imprisoned. That was due to the criminalization of many symptoms and a lack of societal acceptance. Although mental disability has not been a legitimate excuse for imprisonment, mental health problems are still significant in today’s prisons.

National Problems

Nationally, estimates for the percentage of inmates with a severe mental illness range from 15% to 20%. As previously mentioned, the Los Angeles County Jail was described by its sheriff in 2005 as the largest mental hospital in the country. At the Cook County Jail in Illinois, about 1/3 of the incarcerated population has a mental illness. According to the mental healthcare supervisor at the Gwinett County Detention Center in Georgia, the closure of a nearby psychiatric hospital caused the number of mentally ill inmates to skyrocket. In Polk County, Florida, the jail has a mental health unit based on psychiatric hospitals and “immediately put[s] them back on medication because the vast majority of them – the overwhelming majority of them — have decompensated.” In the U.S. Virgin Islands, individuals who were found not guilty of a crime by reason of insanity – that is, who committed a crime but were determined not to be culpable due to a mental illness – are kept in the general prison population rather than being hospitalized. For that reason, the U.S. Virgin Islands has been involved in a class-action lawsuit, Carty v. Mapp, since 1994, one which shows no signs of being resolved.

These situations are exacerbated by the criminalization of symptoms and coping mechanisms of people with mental illnesses. Some people use illegal substances as a means of self-medication. Others steal food or break into buildings to find a place to sleep. Rather than investigating the reasons behind these crimes, people are incarcerated, sometimes medicated, and only occasionally given true mental health treatment. They are then released with no outside support or ways to continue accessing medications.

That is still entirely ignoring that prisons can cause mental health issues on their own. Solitary confinement, something that is widely used in American prisons, can cause or worsen symptoms of mental illness. Incarcerated people kept in solitary confinement are almost seven times as likely to harm themselves and more than six times as likely to “commit acts of potentially fatal self-harm” when compared to the general prison population.

Failures in the South

In 2017, a federal district court found that the Alabama Department of Corrections (ADOC) was providing “significantly inadequate care.” This decision came after years of litigation. The case, Braggs v. Dunn, is still ongoing almost ten years after it was first filed in 2014. Since then, little has changed in ADOC’s prisons.

An opinion given in the case mentioned Jamie Wallace and his testimony 36 times over 300 pages. Wallace was incarcerated in 2014 for the murder of his mother. He had been diagnosed with bipolar disorder and schizophrenia. He testified in December of 2016. He died of suicide ten days later while in a unit dedicated to severely mentally ill inmates. Five days prior to his suicide, a healthcare worker at the prison wrote that he was “using crisis cell/threats to get what he wants.”

Wallace was mentally ill. For that, he was punished by prison guards. He was disciplined twelve times for harming himself, six of which involved being subjected to solitary confinement. Solitary confinement is regularly criticized for being inhumane, and it is especially so for those with preexisting mental health issues. According to Solitary Watch, a non-profit dedicated to ending the overuse of solitary confinement, citing a 2014 study on the topic, “individuals placed in solitary confinement were 6.9 times more likely to commit acts of self-harm and 6.3 times more likely to commit acts of potentially fatal self-harm than people in the general population.” Adding that people with mental illnesses are more likely to harm themselves than people without paints a grim picture of what happens inside these walls.

After Wallace’s suicide, the court ordered an emergency plan to be made to prevent future suicides. That plan was too late for James David Johnson, who hung himself only a few days after Wallace.

The court also accused correctional workers of being ambivalent or actively encouraging suicide. “ADOC officers essentially called a prisoner’s bluff, and then that person attempted suicide.” During his testimony, Wallace said that a correctional officer handed him a razor blade and told him, “You want to kill yourself? Here you go. Use this.” The two parties in the case had previously settled over the issue of razor blades’ presence in crisis cells – the same kind of cell Wallace was able to hang himself in. This lack of awareness on the part of ADOC was only exacerbated by the chronic understaffing of mental health workers. In January of 2023, ADOC stopped reporting the number of deaths – both homicides and suicides – that occurred in its prisons.

In 2021, Disability Rights Mississippi, Mississippi’s federally mandated watchdog agency (protection & advocacy agency), filed suit against the Mississippi Department of Corrections due to severe mistreatment of numerous disabled inmates. One individual, who was described as having ADHD, OCD, and bipolar disorder, was refused access to his medications and, according to DRMS’s investigative report, “during suicide watch, recalls being told by a passing officer to go ahead and kill himself.” Another person with PTSD and bipolar disorder “needs… mood stabilizers. MDOC has yet to treat this offender.” The lawsuit itself, Wallace v. Mississippi Department of Corrections, reads, “DRMS has encountered many offenders who have attempted self-harm, which was ignored by MDOC staff. In some cases, the self-harm was encouraged by MDOC staff.”

Florence Supermax

A short time after Braggs v. Dunn, another lawsuit was filed for similar reasons – this time against the supermax prison in Florence, Colorado, also called the ADX. Rodney Jones, who assisted in the early stages of the lawsuit and who was previously held in the ADX, told the New York Times in 2015 that a staff psychiatrist stopped the medication he took for his bipolar disorder because “We don’t give out feel-good drugs here.”

One of the plaintiffs in that lawsuit is Jack Powers. Powers was sent to the ADX after an escape attempt preempted by threats from members of the Aryan Brotherhood, some of whom he had testified against after witnessing the murder of a friend. All three men he testified against were being held at ADX Florence when Powers was transferred there. While incarcerated there, Powers “lost his mind.” He mutilated himself numerous times, including by removing his earlobes, chewing off one of his fingers, removing one of his testicles, and tattooing himself with a razor and black carbon paper dust.

David Shelby was incarcerated for threatening President Bill Clinton after he “became convinced that God wanted him to free Charles Manson from prison.” While incarcerated, Shelby sliced off part of his finger and ate it. Herbert Perkins, another prisoner, attempted to cut his throat with a razor. After being treated, he was ordered to mop up the blood left in his cell – it had not been cleaned since he was taken to the hospital.

Conclusions

American prisons often have inhumane conditions. Those issues are compounded even further when the inmates in question have a mental illness. Prisons are unprepared to serve as psychiatric institutions, nor have they, overall, attempted to change to do so. Even so, that is what they are doing. Between the lack of adequate treatment, the negative psychological effects being incarcerated can cause, and the lack of assistance from correctional workers, it should be no surprise that rates of self-harm, suicide, and mental illness in prisons are so high.

Courts take time to process cases. This is demonstrated by many of the cases mentioned; Carty v. Mapp has been ongoing for 30 years, Wyatt v. Stickney ended in 2003, 33 years after it was first filed, and Braggs v. Dunn, one of the more recent lawsuits mentioned, is over a decade old. This is by design. A longer trial gives more opportunity for both parties to adequately present cases and, in the cases of these lawsuits, make changes. Despite that necessity, something needs to change. Mentally ill people are suffering and dying in jails and in prisons. The correctional system will not change on its own; it takes outside pressure to change things, and lawsuits, the most effective means of creating this change, take decades to be resolved. Systemic changes need to be made to how these prisons function and the societal role they play.

Modern American Slavery: Forced Prison Labor

by James DeLano

Historical Slavery in the United States

Slavery was abolished in the United States in 1865 with the ratification of the 13th Amendment. The amendment reads, “Neither slavery nor involuntary servitude, except as a punishment for crime whereof the party shall have been duly convicted, shall exist within the United States, or any place subject to their jurisdiction.”

At least, that is what I was taught in high school: slavery ended in 1865 with the 13th Amendment. What was not taught was the century and a half of forced labor since then, predicated on an intentional loophole in the 13th Amendment. Activists were active in their denouncement of and work towards ending this system over a century ago, and not much has changed since.

That loophole was not the only way slavery persisted. Chattel slavery, slavery as it existed in the South prior to 1865, existed in the United States until at least 1963. Mae Louise Walls Miller grew up in rural Louisiana, where she and her family were enslaved. They were freed in 1963, when she was only 14 years old. Her family, possibly the last chattel slaves in the United States, were freed after President Biden graduated high school. This was not an isolated instance; this form of slavery existed in scattered patches across the rural South for decades after the end of the Civil War.

In this post, I will illustrate how forced prison labor continues to maintain slavery in the United States.The convict leasing system, where people convicted of crimes are “leased” to companies to perform hard labor, started in Alabama in 1846, and their prevalence exploded after the 13th Amendment abolished what was previously the most common form of forced labor. This system was incredibly dangerous; in 1874, a typical death rate was one-third of people working on railroads. A contemporary prison official said that “if tombstones were erected over the graves of all the convicts who fell either by the bullet of the overseer or his guards during the construction of one of the railroads, it would be one continuous graveyard from one end to the other.” Elsewhere, between 1888 and 1896, over 400 people died of tuberculosis contracted while working in Sloss Steel and Iron Company mines.

Many of those arrested and convicted during this system were sentenced under questionable circumstances. One common situation was being arrested for riding a train without a ticket “by a man who is paid $2 for every person he arrests upon that charge.” After accounting for inflation, $2 in 1907 would be worth over $65 today.

Convicts being forced to work under a convict leasing program in Florida. Source: Yahoo Images

Between 1880 and 1900, this system profited over $1,134,107 in saved labor costs, which would be worth nearly $40,000,000 today. It profited $1,322,279 between 1900 and 1906. Alabama banned this method of forced labor in 1928.

Modern American Slavery

The United States has maintained both the highest incarceration rate of any country in the world and the highest prison population for several years. Two-thirds of inmates in American prisons are also workers in both private-sector and public-sector jobs. Alabama convicts on work-release programs are allegedly paid just over $2 per day.

Alabama did not stop using forced prison labor in 1928. A lawsuit was filed in December 2023 alleging gross mistreatment, violations of both the United States and Alabama Constitutions, and instances of retaliation against a convict on work-release due to reporting of sexual harassment. It alleges dangerous working conditions; in August, two convicts were killed while working as part of a road crew. It alleges the intentional violation of parole guidelines in order to continue the system of forced labor as it currently exists in prisons. It also repeats accusations of negligence in regard to healthcare. Antonio Arez Smith was released last year in “excruciating pain” due to untreated cancer. He died four days after his release. The Alabama Department of Corrections (ADOC) stopped releasing inmate death statistics in October after years of increasing rates.

According to the American Civil Liberties Union (ACLU), 64% of incarcerated people being forced to work felt unsafe while doing so, and 70% did not receive job training. None of what I have mentioned above is considered enough of a crime to warrant consequences.

Workers’ protections do not apply to incarcerated people, including minimum wage laws, unionization, and any assurance of workplace safety. None of this should be surprising knowing the text of the 13th Amendment; incarceration is explicitly listed as an exception to the abolishment of slavery, and slaves are not permitted rights.

A black incarcerated woman sewing with a Department of Corrections label behind her. Source: Yahoo Images

This form of forced labor is ubiquitous. The lawsuit previously mentioned lists as defendants companies that have become household names: McDonald’s and the parent companies of Wendy’s, KFC, and Burger King. Elsewhere, well-known companies use prison labor as a cost-cutting measure: Amazon, AT&T, Home Depot, FedEx, Lockheed-Martin, and Coca-Cola, as well as thousands more nationwide.

The Alabama Department of Corrections reported generating over $48,000,000 in 2021, and received hundreds of millions of dollars more from other sources. Most of that was directly appropriated from the state, but it also included federal funding intended for COVID relief. The total sum diverted into the Department of Corrections was $400,000,000, or about one-fifth of the total relief funds. The Treasury Department describes the funds as “support[ing] families and businesses struggling with [the pandemic’s] public health and economic impacts.” Instead of spending it on struggling Alabamians and small Alabama businesses, the state spent its funds on building new prisons despite us already having one of the highest incarceration rates in the country.

What is Being Done

The Alabama Department of Corrections is involved in several lawsuits related to alleged misconduct. The aforementioned lawsuit, Council v. Ivey, has a hearing scheduled for February 8th. ADOC is involved in several other lawsuits and has been for decades; Braggs v. Dunn was filed in late 2014 over neglect and remains unresolved, as does a Department of Justice lawsuit filed in late 2020 over critical understaffing. The new Alabama constitution, voted on in 2022, changed the text’s phrasing of its prohibition of slavery. Prior to that vote, it read, “no form of slavery shall exist in this State; and there shall not be any involuntary servitude, otherwise than for the punishment of crime, of which the party shall have been duly convicted.” The equivalent section now reads “That no form of slavery shall exist in this state; and there shall not be any involuntary servitude.” In addition, Congresswoman Nikema Williams and Senators Jeff Merkley and Cory Booker have proposed the federal “Abolition Amendment,” intended to close the prison labor loophole.

Nationally, prison reform is a coordinated movement. Numerous organizations focusing on prison reform generally also have efforts in place to reform or abolish forced prison labor. I have used sources from the Equal Justice Initiative and the American Civil Liberties Union in this piece. The lawsuits mentioned were filed by current and former Alabama inmates, the Southern Poverty Law Center and Alabama Disability Advocacy Program, and the U.S. Department of Justice. Of those, only Council v. Ivey directly addresses forced labor; the others work towards improving prison conditions more broadly but still contribute to the common goal of reforming prisons.

How American Disability Rights Are Not Enforced

by James Delano

What Disability Rights Laws Exist?

The Americans with Disabilities Act (ADA) is the primary law safeguarding the rights of disabled Americans. It was passed on July 26th, 1990, with updates later passed in 2008. The ADA was the largest law related to rights for people with disabilities in the United States when it was passed and remains so today.

The ADA recognizes three major areas it applies to, covered in Titles I, II, and III.

Title I was written about employment. It ensures equal access to employment for people with disabilities. It forbids discrimination towards employees with disabilities based on their disability and requires reasonable accommodations be made for them. Title II covers public services and buildings, such as libraries, public colleges and universities, courthouses, and benefits programs. Title II creates stricter standards for publicly funded agencies and programs than Title III does for private organizations. Both Title II and Title III require reasonable accommodations be made for the disabled individual requesting the accommodation without the infliction of undue hardship.

Title III covers private corporations and “public accommodations,” which include hotels, restaurants, stores, private schools or daycares, parks, and others.

Prior to the passage of the ADA, legislation designed to improve the rights of people with disabilities was sparse. The first major piece of legislation passed was Section 504 of the Rehabilitation Act of 1973. Section 504 was signed in 1977, years after the original Rehabilitation Act, due to the 504 sit-ins occurring at the time. The first version of IDEA, which protects children with disabilities, became law in 1975. The Fair Housing Act was only expanded to people with disabilities in 1988.

Dozens of protestors celebrate in San Francisco after Section 504 was passed. Source: Yahoo Images

The ADA is primarily enforced by complaint. A person with a disability is required to submit a formal complaint to the Office of Civil Rights or to the Department of Justice. They are then required to go through the process of creating a mediation agreement to ensure future access for the complainant and for future people with disabilities. People with disabilities are discriminated against in almost all parts of life: employment, marriage, and voting.

For example, in 2016, Jefferson County was forced to alter its polling locations due to violations of the ADA in numerous polling stations. Until 2010, UAB was under a similar resolution about buildings on campus; many buildings built and renovated after 1992, when architectural requirements began being enforced, were non-compliant with the ADA. Both complaints were filed by people with disabilities after their rights were violated.

People with disabilities also largely lack marriage equality in the United States. Married individuals almost always lose their benefits after marriage, including Social Security payments, healthcare, and other necessities. Often, people with disabilities would be forced to give up the things that make them able to survive – health insurance, home healthcare, and other benefits – in order to gain the legal protection and social benefits of marriage.

The ADA is the main legal source for most rights for people with disabilities in the United States. If the ADA goes unenforced, people with disabilities are left behind. That is why its enforcement is so important: without the ADA, most people with disability lack the ability to utilize their rights, and without that ability, those rights may as well not exist.

American Disability Rights in Modern Institutions for People with Disabilities

Olmstead v. L.C. (1999) was a Supreme Court decision decided based on the text of the ADA. It created requirements in many cases for community-based services over widespread institutionalization. The goal of the decision was to reduce the number of people with disabilities who lived in institutions.

In 1967, 400,000 Americans resided in these institutions, amounting to about 0.2% of the total U.S. population. By 2012, that number had risen to about 1,900,000 Americans with disabilities living in institutions, or just over 0.6% of the total U.S. population. Is this an example of deinstitutionalization?

A middle-aged man stands inside a room at a group home in front of a bed. Source: Yahoo Images

The ADA applies to group homes and smaller forms of institutions, but abuse is still rampant in those locations. In 2021 in a group home in Eight Mile, a resident was severely beaten, allegedly by an employee of the group home he was living at. A year later, at a group home in Chickasaw, two group home employees were arrested for pouring boiling water on a resident of the home who had physical and intellectual disabilities. In 2022 a man with an alleged history of domestic abuse was employed at a group home in Mobile County, where video footage shows him using a belt to assault a resident with severe disabilities. These cases of abuse in institutions happen regularly, despite Alabama’s rate of institutionalization of people with disabilities being lower than the national average and us being a smaller state than many others.

Larger states and the country as a whole are not immune to this problem. A study conducted in 2000 found that “Children with disabilities are 3.4 times more likely to be maltreated than nondisabled peers.” Between 2004 and 2010, over 6% of the deaths of people with developmental disabilities were caused by neglect and abuse. At the state level, numerous New Jersey group homes were forced to close in 2022 due to unreported abuse.

American Disability Rights in Outside Institutions for People with Disabilities

Discrimination against people with disabilities is not exclusive to group homes and locations specific to people with disabilities. In Alabama alone, since 2013, the Department of Education Office of Civil Rights (DOEOCR) recorded 74 resolved civil rights complaints in Alabama. The DOEOCR covers all areas under the Department of Education (DOE), including universities, K-12 schools, public libraries, and other groups funded by the DOE, and has recorded 74 resolved ADA-related complaints in Alabama since 2013. Those complaints have been filed against institutions including community colleges, four-year universities, including UAB, and K-12 school districts, including Birmingham City Schools twice, the Jefferson County school district once, and multiple other Jefferson County school districts.

Outside of areas of education, the Department of Justice has filed 114 cases related to the ADA and other disability legislation since 2021. Two of those cases occurred in Alabama. One agreement involved Medicaid discrimination; the other was based on employment discrimination by the Alabama Department of Transportation. Prior to 2021, the Department of Justice filed numerous other cases regarding the ADA. Many cases involved people with HIV/AIDS, who are classified as disabled under the ADA. Others were over Olmstead. As I discussed above, Olmstead was intended to aid in the national deinstitutionalization effort. To that effect, the Department of Justice has filed many cases since Olmstead was decided regarding its enforcement.

Medicaid is not immune to these problems either. Medicaid provides health insurance to low-income individuals and people with disabilities, many of the latter also being low-income. Last year, the Alabama Disability Advocacy Program (ADAP) filed a complaint against the Alabama Department of Senior Services (ADSS) alleging that there are barriers to accessing services provided by programs under the Alabama Medicaid Agency. According to ADAP, in the time they took to process the complaint in question, two individuals on the Medicaid programs in question died due to these failures. These Home & Community Based Services (HCBS) spent $132,000,000 in the 2021 fiscal year, and Alabama Medicaid as a whole received $5.6 billion in federal funding the same year, about $4700 in federal funds for each Alabamian who was eligible for Medicaid at the time.

What is Changing?

There are currently changes being made to many of the systems I discussed in this post. The aforementioned ADAP complaint regarding Medicaid is currently unresolved, and the Colby Act, which my colleague Lexie Woolums discussed at length in a recent blog post, was recently passed into law. Just a few months ago, the Department of Health and Human Services proposed changes to regulations around the Americans with Disabilities Act to clarify those that already exist. Those changes include clearer standards for health insurance coverage of medical equipment and clarify childcare requirements, both of which are things that many Americans have difficulty affording.

A History of Institutions for People with Disabilities: Neglect, Abuse, and Death

by James DeLano

What Are Institutions for People with Disabilities?

In this post, I focus on the institutions that were, and remain, facilities operating for the purpose of housing people with disabilities. The National Council for Disability (NCD) defines these institutions as “a facility of four or more people who did not choose to live together.” They summarize a report made by a consortium of self-advocacy organizations based on their experiences with institutionalization. The NCD list of criteria to define an institution, as synthesized from various self-advocacy groups, is that they:

Include only people with disabilities,
Include more than three people who have not chosen to live together,
Do not permit residents to lock the door to their bedroom or bathroom,
Enforce regimented meal and sleep times,
Limit visitors, including who may visit and when they may do so,
Restrict when a resident may enter or exit the home,
Restrict an individual’s religious practices or beliefs,
Limit the ability of a resident to select or remove support staff,
Restrict residents’ sexual preferences or activities,
Require residents to change housing if they wish to make changes in the personnel who provide their support or the nature of the support,
Restrict access to the telephone or Internet,
Restrict access to broader community life and activities.

Historically, these kinds of institutions have primarily included people struggling with mental health and people with intellectual or developmental disabilities.

What Were America’s First Institutions for People with Disabilities?

Mental institutions in America predate the reality of an American nation. The earliest hospital for the mentally ill, the Publick Hospital for Persons of Insane and Disordered Minds, was founded in Virginia in 1773. It was closer to a prison than what we would now call a hospital; patients were kept chained and shackled, physically abused, intentionally fed rotten food, and bathed in ice water. Inmates were rarely released. Many were placed or kept in prisons prior to or after their evaluation as being “insane.” This began to change in the 1840s; a new medical director attempted to use more humane approaches to treatment. Those included treatment that was consented to and largely removing chains and shackles.

The first modern institution for disabled people was founded by Samuel Gridley Howe in 1848 in Boston, Massachusetts. It was considered experimental, despite others’ previous endeavors taken elsewhere, but Howe had experience in a similar environment, having founded the Perkins Institution for the Blind twenty years earlier. A contemporary article sings praises of the institution. Despite that, the electronic catalog of annual reports by the institution, renamed the Walter E. Fernald State School, ends abruptly in 1973 with a report on identifying child abuse and neglect.

Small Victorian-era prison cell. Source: Yahoo Images

John F. Kennedy

John F. Kennedy (JFK) played an important role in the early reform of institutions for people with disabilities. Many people know that Kennedy’s sister, Rosemary, was lobotomized, leaving her permanently disabled and confined to a psychiatric institution. Lesser known is that Kennedy established the President’s Panel on Mental Retardation in 1961, the first government committee on the topic. The committee’s recommendations led to numerous regulations being changed and legislation being passed. One Panel member, Eunice Shriver, who was also Kennedy’s sister, went on to found the Special Olympics.

Institutions for People with Disabilities in Alabama

The first mental hospital in Alabama was the Alabama Insane Hospital, founded in 1859 and renamed to Bryce Hospital in 1900. Ricky Wyatt, at the time 15 years old, was committed by a court to Bryce in 1969. He was not mentally ill.

Wyatt’s institutionalization led to a widespread deinstitutionalization movement. His guardian, a former employee of the hospital, sued Bryce Hospital on his behalf. During the discovery process, Wyatt’s lawyers discovered numerous preventable deaths in the facility, as well as a complete lack of plans in case of a fire; there was no way to contact the Tuscaloosa fire department after 5:00 PM, and the fire hydrants on the property were decades old and incompatible with modern firefighting equipment.

That lawsuit, Wyatt v. Stickney (1972), was part of the beginning of a legal deinstitutionalization movement. It created a minimum standard for care at Alabama institutions for the mentally ill.

Willowbrook State School

Willowbrook was a state-funded institution in Staten Island from the 1940s until the late 1980s. The school was over its capacity in only a few years; in 1965, Robert Kennedy described Willowbrook as a “snake pit” with “rooms less comfortable and cheerful than the cages we put animals in a zoo.” The few changes that resulted from Kennedy’s visit were insubstantial and short-lived.

Another infamous incident in Willowbrook’s history was the hepatitis experiment conducted on the children in residence. The exact rate of hepatitis infection in children at Willowbrook is unknown; I have seen estimates ranging from 30% to 90% of children becoming infected during their time at Willowbrook. At the time, many specific details of hepatitis were unknown. Willowbrook had a local strain of hepatitis that was reputed to be less lethal than strains common elsewhere. Saul Krugman, funded in part by the U.S. Surgeon General’s Office, began conducting a study on hepatitis in Willowbrook – initially starting with an epidemiological focus, then shifting to a more involved study. Krugman intentionally infected 60 children at Willowbrook with the hepatitis virus by feeding them live samples of the hepatitis virus. Krugman “watched as their skin and eyes turned yellow and their livers grew bigger.”

Willowbrook left the public consciousness almost entirely until 1972, when Geraldo Rivera created a bombshell documentary that exposed the conditions at Willowbrook State School and institutions like it. In March 1972, residents’ parents filed a class-action lawsuit alleging violations of the constitutional rights of Willowbrook residents. Just three years later, as a result of the lawsuit, the Willowbrook Consent Decree created standards the institution would be Willowbrook open, however; Willowbrook State School formally closed “officially and forever” on September 17th, 1987.

Postcard of Willowbrook with a yellow label stating "Willowbrook State School". Source: New York Public Library Digital Collection — Postcard of Willowbrook with a yellow label stating “Willowbrook State School”. Source: New York Public Library Digital Collection

Despite the promise made in the wake of the Willowbrook scandal, alumni are still mistreated today. In 2020, The New York Times published the results of an investigation conducted into recent abuses in a group home in New York where some Willowbrook alumni resided. They describe physical abuse and neglect, including injuries caused by scalding water, deaths caused by neglect, and ant infestations. The investigation made allegations against 13 employees, nine of whom still worked for the agency, and seven of those still worked in group homes at the time of the article’s publishing.

Institutions for People with Disabilities Today

In 2018, the Office of the Inspector General (OIG), along with other federal agencies, published a report on group homes, which have largely succeeded large institutions like Willowbrook or Bryce. They found that, in 49 states, health and safety procedures were not being followed.

“OIG found serious lapses in basic health and safety practices in group homes. OIG made multiple referrals to local law enforcement to address specific incidents of harm.”

Between 2004 and 2010, 1,361 people with disabilities died in Connecticut. 82 of those deaths were caused by neglect or abuse. The causes were found to be due to “abuse, neglect, and medical errors.” The OIG found that “State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents.” These “critical incidents” include deaths, assaults, suicide attempts, and missing persons.

Older man in wheelchair being escorted by caregiver. Source: Yahoo Images — An older man in a wheelchair being escorted by a caregiver. Source: Yahoo Images

While we, as Americans, often like to think our country has advanced for people with disabilities, the reality is disappointing. Willowbrook alumni are still being abused forty years later. Group homes have been found to have widespread abusive and neglectful practices.

State Protection & Advocacy agencies exist as a legal protection for people with disabilities. In Alabama, the Alabama Disability Advocacy Program provides legal assistance to people with disabilities in cases involving civil rights violations and has the ability to investigate said cases in hospitals, group homes, schools, and any other facilities where abuse or neglect of people with disabilities occurs.