Forest Haven. The name conjures up images of a bucolic getaway hidden from view by tree-covered hills. The reality is much different.
The “haven” is actually a campus of close to two dozen buildings on 200 acres outside Laurel, Maryland. At the peak of its 66-year history, it held some 1,300 D.C. residents with intellectual and developmental disabilities. In 1976, a group of parents sued the city over conditions there. Two years later, a federal judge ordered it closed. In 1991, it finally did. Today it stands abandoned and overgrown.
But even though D.C. was one of the first places in the country to completely abandon the use of institutions for people with developmental disabilities, the broader process of integration has been much slower. D.C. residents with disabilities may no longer live in segregated and isolated facilities like Forest Haven, but they also don’t enjoy some of the same chances and choices — especially in employment — as everyone else.
And while it has been 25 years since Forest Haven closed, the 1976 lawsuit that led to its closure remains in litigation. In February, the lawsuit entered its 40th year, evidence of the long and bumpy road D.C. has traveled in pushing to integrate people with disabilities.
In this series, WAMU 88.5 reporter Martin Austermuhle looks at Forest Haven’s history and the lawsuit that led to its closure, revisits what went wrong after Forest Haven closed and what it took to fix it, and examines what communities across the country are struggling with now: getting more people with intellectual and developmental disabilities into jobs.
It’s a trip from institution to inclusion — one that continues today.
Published March 15, 2016. The four parts of the series are airing from Tuesday, March 15, through Friday, March 18, on WAMU 88.5 at 6:50 and 8:50 a.m. Audio for each part will be added to this website on each day it airs.
As Harold Evans slowly shuffles around his home in Bowie, Maryland, he points to papers, pictures, awards and keepsakes to jog his memory.
There’s his arrival in the District in the late 1930s, where he would live for the following 60 years. His Army service in Korea. The stint at the Library of Congress in the 1950s — when African-Americans with college degrees were relegated to clerical and custodial jobs. His subsequent career with the U.S. Postal Service. His role as the deputy foreman on the grand jury that brought indictments against the Watergate burglars.
They’re moments in his 85 years that have come and gone. Some of the people in the pictures have come and gone, too. His first daughter, Joy, died as a teenager in 1976. His wife of 50 years, Betty, passed away in 2010.
But one thing has remained constant over the last four decades of Evans’ life: a class action lawsuit bearing his family name.
Filed on Feb. 23, 1976, Evans v. Washington brought claims of mistreatment against Forest Haven, the District’s institution for people with intellectual and developmental disabilities. Evans sued on behalf of Joy, who had been committed to the institution in 1967 — when she was 9.
Evans says his daughter, who had been diagnosed with an intellectual disability when she was 2, not only suffered injuries at the hands of the institution, but also had few opportunities for recreation or education.
“Forest Haven was just a holding institution,” remembers Evans. “They had about 60 people together in each cottage and they would put them in a big dayroom, no activity or anything. They were just there together.”
Even worse, Forest Haven wasn’t even located in D.C., but rather 22 miles to the northeast in Laurel, Maryland. That distance added time and expense for many families who wanted to visit loved ones, and it shielded many of the abuses from prying eyes.
In the lawsuit — which came to include the 1,050 residents then at Forest Haven — Evans and five other families broadly alleged that despite good intentions, the four-decade-old institution provided “only the most meager custodial care” to its residents.
It was, many say, little more than a warehouse for those labeled as “feeble-minded” and “retardates,” terms for people with intellectual and developmental disabilities that were used through much of the 20th century.
In 1978, a federal judge handed the Evans plaintiffs a victory and ordered the institution closed. After numerous fits and starts in placing Forest Haven residents in group homes throughout D.C., in late 1991 the institution finally did close.
But the story of Evans — and many of the issues it raised about how D.C. treats residents with intellectual and developmental disabilities — didn’t end there.
The four-decade fight
In February, the Evans lawsuit entered its 40th year. It has spanned seven D.C. mayors and been overseen by three different federal judges. The plaintiffs have moved to hold D.C. in contempt on seven different occasions. In the time since it was filed, half of the plaintiffs originally represented have died — some from natural causes, others because they weren’t properly cared for.
It has cost D.C. untold millions of dollars, and the city’s agencies for intellectually and developmentally disabled residents remain under the watchful eye of a federal judge, three court monitors and a nonprofit organization that D.C. was forced to create in 2001 — to the tune of $31 million.
Those constraints have produced results. Advocates broadly agree that D.C.’s ability to care for residents with intellectual and developmental disabilities has improved dramatically — largely over the last decade. There’s even hope — though usually shared in hedged whispers — that this may be the year that the Evans lawsuit is finally dismissed.
But many of those same advocates also say the improvements in D.C. came too slowly after Forest Haven closed, because the process was bogged down by bureaucratic impediments, a financial crisis and an overall lack of leadership and political will among city officials. In some cases, those missteps cost lives — and served as an indictment of the city’s concern for this particular group of residents.
“The measure of a society is how it treats its most vulnerable residents,” wrote a federal judge in 2001. “In this case, the District government failed.”
More than a decade later, the failures continue to resonate. The story of Forest Haven, the Evans lawsuit that led to its closure, and the slow reforms in the system speak broadly to the difficulties in changing how the United States treats people with intellectual and developmental disabilities. But the story also holds vital lessons on the possibility for progress. For states that still operate public institutions like Forest Haven and are slowly moving to close them, D.C.’s transformation — though far from complete — shows the effectiveness of advocacy by people with disabilities, their families and their supporters. Protests, legal actions and pressure on politicians have pushed governments to act.
The country’s thinking has evolved, too. Once typically banished to institutions, easily ignored and forgotten, people with intellectual and developmental disabilities are now more often integrated into their communities. The basic assumption now is that they should live — and perhaps most importantly, work — alongside everyone else as much as possible.
That shift had started before Harold Evans decided to sue over conditions at Forest Haven, but he says it probably would have occurred far more slowly had it not been for the lawsuit.
“Something had to be done,” he says.
‘Your son or daughter has to go to Forest Haven'
When Congress appropriated money in 1922 for the purchase of 200 acres of undeveloped farmland outside Laurel for an institution to house and educate D.C.’s “feeble-minded” residents, it was widely believed the segregation of the disabled at the bucolic getaway would best allow for their humane treatment and education.
Opened three years later as the District Training School, boys and girls sent to the institution took part in farm chores as a means to gain skills that eventually might land them a job — and the chance to be reincorporated in the city only 22 miles to their south.
But by the 1960s and ’70s, the institution — then known as Forest Haven — had expanded to encompass close to two dozen buildings, many named after flowers and trees. (The men lived in buildings with tree names, the women in buildings with flower names.) Its population had ballooned to 1,300 people — many black and poor — because Forest Haven had become the option of first resort for a system and society that did not know of alternatives for residents with intellectual and developmental disabilities, severe and otherwise.
“If you had a child, son or daughter, or brother or sister with developmental disabilities and you took them to the system and asked for help, the first thing they would say is, ‘Your son or daughter has to go to Forest Haven,’” says Tony Records, who in 1973 started his career working with people with disabilities at the institution.
It was much the same across the country. By 1967, hundreds of institutions throughout the country held 194,000 people with intellectual and developmental disabilities. And as with Forest Haven, inadequate treatment and poor conditions provoked lawsuits at a number of them.
“Willowbrook in New York, Pennhurst in Pennsylvania, Partlow in Alabama,” says Bob Dinerstein, a professor at American University’s Washington College of Law who specializes in disability law and policy. “These were very common places, and they were initially set up to provide a location for treatment and training, but they quickly devolved into places that were at best custodial and often worse.”
That was Harold Evans’ experience with his daughter Joy, who had a severe intellectual disability and was also diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and a number of physical ailments. He and his wife decided to send her to Forest Haven after it became too difficult to provide her with the aid she needed.
“She needed to be where she could get full-time care,” he says.
But within days of arriving at the institution, Joy had suffered injuries that Evans says were never properly explained.
“Lacerations to the head; chipped teeth; numerous deep scratches over the entire body; numerous bruises; injuries to the eyes; injuries to the fingers, toes, buttocks; black and red eyes; bruised face; a hematoma to the back of the head that was so bad that it necessitated a hospital stay,” he remembers.
Joy Evans lived in the Curley Building, a low-slung modern addition to the campus that housed 160 of Forest Haven’s most disabled residents. But it was never properly staffed, says Records, who spent time working at Forest Haven.
“I would walk into a room and here would be 40 or 50 people with one staff,” he recalls. “Many of them wouldn’t be clothed, they’d be wearing diapers. They had no day programs, nothing to do during the day, nowhere to go. The staff that they had were inadequately trained.”
According to Evans, in the nine years that Joy was at Forest Haven, she only received eight months of education.
Shortcomings at Forest Haven also had deadly consequences. In 1974, there were 17 deaths of residents at the institution. In 1975, there were 13. Those deaths — and many like them in preceding and succeeding years — were largely attributed to aspiration pneumonia, which can occur when people are fed while lying down and food lodges in their throats or goes into their lungs.
There were also residents who remained for decades at Forest Haven after being misdiagnosed.
The most famous was Mattie Hoge, who was institutionalized in 1930, when she was 17. Originally thought to be intellectually disabled, it came out later that she was actually deaf — and during her 57 years there she was never re-tested by someone who knew American Sign Language. In 1987, a federal judge ordered her release.
Another was Lonnie Jackson, who spent 13 years at Forest Haven despite not having an intellectual disability. He once attempted to escape by walking 15 miles to Baltimore-Washington International Airport, but was caught and returned to Forest Haven. He was finally freed in 1971.
“And so help me God, I hate that institution,” he said during a congressional hearing in 1976.
That same year, a census of the 1,050 residents at Forest Haven found that 400 of them had the capacity to be immediately released and integrated into the community.
“It’s like committing a crime that you never committed but you just going through time in a place that you have no idea why I was put there,” says Ricardo Thornton, who was committed to Forest Haven in 1966, and lived there until 1978.
‘One of the most dehumanizing things I’d ever seen’
Vincent Gray, who served as D.C.’s mayor from 2011 to 2015, first visited Forest Haven in the late 1960s. He had recently finished a master’s degree in clinical psychology from the George Washington University, but was convinced by a professor working with the Arc — formerly known as the Association of Retarded Citizens — to shift his focus to intellectual and developmental disabilities.
“I walked up to this fence, maybe a 20-foot fence around one of the dormitories, one of the cottages,” he says of his first trip to the institution. “And while I was standing there, a staff person brought about 15 or 20 women out of the building who had not a stitch of clothes on, and took a hose and just hosed them down. It was one of the most dehumanizing things I had ever seen then, and frankly even now. And there was the moment when I said, ‘There’s gotta be a better way to do this.’”
Gray’s revelation came amid a broader national rethinking of the merits of institutionalization that started under President John F. Kennedy, whose youngest sister Rosemary was born with an intellectual disability.
In 1961, Kennedy created the President’s Panel on Mental Retardation. Two years later, he delivered the “Special Message to Congress on Mental Illness and Mental Retardation,” where he called for a move away from custodial institutions — like Forest Haven.
Still, Kennedy’s lofty words and expectations did not come quickly to institutions like Forest Haven. In 1971, Harold Evans and other frustrated parents created an organization to advocate for improvements in care. Five years later, in February 1976, they sued.
“While the purpose of commitment to Forest Haven includes treatment, education and training, residents receive virtually no treatment,” the lawsuit said, going on to detail the restrictive conditions under which many residents were kept. “The vast majority of residents spend their days at Forest Haven in forced inactivity.”
In April and May 1976, only months after the Evans lawsuit was filed, a congressional committee held a pair of hearings on conditions at Forest Haven. City officials tried as best they could to deny allegations that the institution was the “snake pit” some critics called it, but were batted down by legislators who had recently paid Forest Haven a visit.
“This first hand look certainly persuades me that we really still hide the mentally retarded,” said Rep. Charles Diggs, a Democrat from Detroit. “We still force them to live out unproductive days behind institutional walls really erected to confine them.”
In June 1976, the U.S. Department of Justice joined the Evans lawsuit on the side of the plaintiffs, then every resident at Forest Haven. Two years later, Judge John H. Pratt of the U.S. District Court for D.C. handed the Evans plaintiffs a victory with a sweeping ruling that found that D.C. had violated the constitutional rights of the residents at Forest Haven to be protected from harm.
Pratt said that D.C. had to take immediate steps to improve conditions at Forest Haven, and also stop accepting new residents. He also ordered that all the existing residents be moved into less restrictive settings in D.C., where they could receive services and live normal lives.
“Habilitative care in the alternative least restrictive of individual liberty means living as normally as possible and receiving appropriate individualized services in the community in the least separate, most integrated and least restrictive settings,” he wrote.
The ruling mirrored similar decisions in Pennsylvania with the Pennhurst State School and Hospital and in New York with the Willowbrook State School, marking the start of the trend towards deinstitutionalization across the U.S.
But it also set the bar for D.C. much higher than simply closing its institution. Whatever came after Forest Haven, Pratt said, would have to meet the ruling’s high standards that disabled residents be cared for in a community setting and offered the opportunity to carry on normal lives.
Closing Forest Haven
Shirley Reese is a slight woman with bright eyes and an easy smile.
When she recalls her time working as an intake coordinator and social worker at Forest Haven in the 1960s and ’70s, her face hides little. She mournfully remembers telling her husband of the residents she never believed should be there, and proudly recounts how she took it upon herself to start a theater group and take residents horseback riding.
Now 86 and retired in Finksburg, Maryland, Reese was at Forest Haven in 1978 when the court ordered it shuttered. But as she quickly learned, demanding the closure was the easy part. Actually closing it was a much heavier lift.
That’s because D.C. officials had to scramble to create a system big enough to accommodate the institution’s residents in city neighborhoods. And getting existing D.C. residents on board was difficult, says Reese.
“I had to go to all of the [community] meetings and say that a group home was opening in their neighborhood, and you can imagine the reception that got,” she remembers. “In those days, you used the word ‘retarded.’ And they heard that retarded people were coming and they didn’t know exactly what this meant. I think they thought that they would hurt them.”
And for those Forest Haven residents who had family, there was also the challenge of overcoming the decades-long assumption that institutions provided the best space for care, education and training.
“Families were told by their doctors, ‘Put your son or daughter in the institution, it’s the best thing for them. And then, 20 years later, someone like me comes along and says, ‘Your family member would be best off living with a small group of people or by themselves.’ There was a tremendous amount of guilt, shame and confusion among families that heard this for the first time,” says Records, who was appointed by Pratt to monitor the closing of the institution.
Even though the court had laid out the ultimate goal in its 1978 ruling, Judge Pratt and the Evans plaintiffs remained involved in the years after, often using the power of the court to compel the city to move more quickly.
In both 1981 and 1983, the Evans plaintiffs asked Pratt to hold D.C. in contempt for not moving residents out of Forest Haven quickly enough and not doing enough to protect those that remained. Both times, Pratt spelled out additional measures city officials had to take.
“When we went into court and filed for contempt, predictably there would be activity,” says Joe Tulman, one of the attorneys for the Evans plaintiffs. “When the court asserted its authority, the District of Columbia would buckle down and do more.”
In 1989, another motion contempt was filed — and the federal judge held D.C. in contempt for its “consistent and continuing violation of the three consent orders.” He gave the city until Sept. 30, 1990, to move out the last remaining 233 residents. He also threatened the city with steep fines if it failed to keep to the schedule.
In the institution’s final two years, eight more residents died. On Oct. 14, 1991, Forest Haven closed its doors for good.
Joy Evans did not live to see a post-Forest Haven world; she died in 1976, the same year the lawsuit bearing her name was filed. The cause: aspiration pneumonia.
Over the 66 years that Forest Haven was open, some 3,200 people lived there. More than 300 died, many of them buried in a mass grave on one edge of the facility. In 1987, a massive headstone with many of their names was placed there.
For some, Forest Haven’s closure was the start of a better era for people with developmental disabilities.
“I was happy that people were going to live lives that would help them more,” says Reese. “They wouldn’t be in a big room doing nothing. They would have more contact with people in the community.”
For Donna Thornton, a D.C. resident who had been placed at Forest Haven when she was 4 years old, the chance to leave fulfilled a dream she says she would often whisper to herself as she used a playground on the institution’s campus.
“I used to swing, and swing and swing. I asked my Lord, I said, ‘Lord, how can I get out of this institution?’ And I said to myself, ‘I must have to work my way out.’ And then I asked the Lord, I said, ‘You know what, Lord? It’s not only me, but I want everybody to get out, I want this institution to close and we don’t have to be in this institution no more,’” she recalls.
“So after that, things came true, things came true for me.”
But for others who had been to Forest Haven and pushed to close it, the sense of joy at the hard fought victory was tempered by something else: a feeling of foreboding.
“We had a focal point for advocacy, and that was Forest Haven,” recalls Gray. “But we’re trying to create a community-based system that is going to be a lot more diffuse, a lot more spread out, a lot more diverse than what we have now. And the advocacy and monitoring efforts that are going to be necessary are going to be infinitely more difficult.”
Gray was right. The fight for the rights of D.C.’s intellectually and developmentally disabled residents hadn’t ended — it had only started.
When Forest Haven closed its doors in late 1991, there was space for optimism and excitement: No longer would intellectually and developmentally disabled D.C. residents be segregated and isolated in an institution 22 miles from their hometown.
“It was exciting. When we heard the news that Forest Haven was closing the institution, we were like ‘Yay, we’re getting out, finally we’re finally getting out, we’re going to the community!’” remembers Ricardo Thornton, who arrived at Forest Haven in 1966 and was among the first to leave after a federal judge ordered the closure in 1978.
D.C. officials could also claim to be leaders in the field: Other than New Hampshire, no other state in the country had completely shuttered its public institutions and opted instead for community-based options for people with intellectual and developmental disabilities.
To replace Forest Haven, D.C. created a network of 160 city-funded, privately operated group homes scattered throughout the city. The homes would offer its residents not only medical care, but also the ability to gain an education, participate in day programs and even seek out jobs.
Thornton, now 57, was one of the lucky ones. He was quickly able to transition into community living, land a job and marry Donna, a fellow Forest Haven resident. (In 2003, the story of their marriage became a made-for-TV movie on CBS titled “Profoundly Normal.”) Soon after marrying, they had a son.
But not all former Forest Haven residents enjoyed such additional freedoms and opportunities. Many entered a system where care was uneven, oversight was inadequate and city agencies remained unprepared to deal with the more than 1,000 residents covered by the Evans lawsuit that closed Forest Haven.
In some cases, D.C. lost track of former Forest Haven residents. In others, residents died at the hands of group homes charged with protecting them. For those reasons and more, D.C. remained mired in the Evans lawsuit for decades, with multiple federal judges upbraiding city officials for not doing more to comply with the 1978 ruling.
“What happened in the early days after Forest Haven closed was that things really fell upon hard times. It was a very difficult situation,” says Vincent Gray, who had fought to close Forest Haven and in 1991 was appointed to head the D.C. Department of Human Services.
Some experts say that D.C. was put in a tough position after Forest Haven closed, forced to build a system of services and care for residents who previously had been cared for in a single institution. But others say that city officials showed little urgency in working to help a class of vulnerable residents that held little political power.
Gray thinks it was a combination of both, coupled with a much broader problem.
“There were far too many people who thought that once Forest Haven closed the job had been completed,” he says.
But it hadn’t, and the next two decades would provide a lesson in how difficult it can be to replace an institution with community-based alternatives.
A final rush to closure
When Brenda Blount went to Forest Haven for the first time in 1989, the institution was in the throes of a court-mandated closure. Some 200 residents remained, and Georgetown University, her employer, had been hired to help find them community-based alternatives in D.C. before the federally imposed 1991 deadline to finally shutter the troubled institution.
Blount, a British-born social worker who lived in nearby Laurel, remembers those panicked two years at Forest Haven.
“I’d walk in a winter morning and the doors would be open and there’d be no sheets on the plastic mattresses and [residents] be lying on the mattresses and everyone was scurrying around trying to find sheets and clean diapers. They didn’t have the things they needed to change them and dress them. We started bringing in clothes of our own to help dress the clients. We brought in food ourselves, treats for the clients,” she says.
One of her clients, as the residents were called, was Andi, a woman with severe disabilities who had been at Forest Haven for 20 years. (Blount asked that Andi’s full name not be published to protect her privacy.)
“She was so sweet. She smiled every time she saw me. She was so helpless. She was like a little infant because she lived in a crib. She couldn’t sit up on her own. She was just so sweet and calm. Just her personality, she was just a wonderful little thing. I just fell in love with her, to be quite honest,” she says.
Andi, who used a wheelchair and could not speak, had no family, so Blount asked if she could take her home. After negotiations between the university and D.C., the city agreed to make Blount Andi’s foster parent. They lived together in Laurel until Blount got married and prepared to move to Baltimore to be with her new husband. D.C. officials refused to allow Andi to move with her, so she was instead placed in a group home in D.C.
“We took her there for the first week or two, she was fine. And then all of a sudden we kept getting calls, ‘She’s in the hospital.’ Then she started being put in intensive care. And after the third trip to intensive care, we said, ‘This is wrong.’ She lost a lot of weight, she obviously wasn’t being fed properly,” says Blount.
“The staff were overworked, they didn’t have time to sit for an hour and a half to two hours and feed Andi. They had other clients to feed,” she says.
With the help of a team of attorneys, Blount was able to take Andi back into her home. They’ve been together for 25 years, and in the last decade moved to West Virginia.
But other residents of the city’s new group homes weren’t so fortunate.
In the late 1990s, D.C. trial attorneys Joe Cammarata and Ira Sherman were approached by the sister of Fred Brandenburg, a former Forest Haven resident who in 1997 had died in a group home located in Tenleytown. She wanted to investigate his death and hold the city accountable.
As they started looking into it, they realized Brandenburg’s case wasn’t an outlier.
“To use the term ‘system’ gives it too much credit. There was no system. It was just a haphazard patchwork of ‘Let’s put people out into the community but have no accountability over the group-home providers less any accountability of ourselves, the District of Columbia.’ It was a terrible situation,” says Cammarata.
In 1999, an investigative series by The Washington Post revealed that at least 116 people had died in group homes starting in 1993, two years after Forest Haven had closed. In 34 of those deaths, reporter Katherine Boo discovered delayed treatment or neglect.
The investigation found that many of the city’s group homes were run by organizations or individuals with no particular experience in dealing with people with disabilities, and the city had no mechanism to monitor the group homes and the services they provided.
“They were doing this as an investment,” says Cammarata of some of the group home operators. “To add insult to injury, you have somebody that’s not connected with this type of special population, these special needs, and as a result it became a situation where, ‘How can we make money off the backs of these people that really need the care?’”
Cammarata came to represent the families of over a dozen residents with intellectual and developmental disabilities. He sued the city on their behalf, eventually reaching settlements for all of them.
As part of the settlement, in 2004 the city placed a plaque in the lobby of the D.C. Department of Human Services listing the name of 10 residents who had died in group homes.
The plaque remains there today, bearing a message that remains relevant: “In recognition of the importance of protecting the lives of all vulnerable citizens in the District of Columbia.”
“We decided that it would be important that there be some recognition of the harm that was done to not only the clients that we represented, or the families of the people who died, but also the other individuals as a class of people who were harmed by the wrongdoing by the District,” says Cammarata.
But in one final indignity, in 2000 D.C. sued Brandenburg’s estate to recover $400,000 for medical care he received — despite the fact that it was that very care that had killed him. After the lawsuit was publicized, Mayor Anthony Williams quickly withdrew the city’s demand for payment.
‘There was almost no infrastructure’
What the Post series and Cammarata’s legal advocacy uncovered was a system not yet prepared to oversee the group homes that had replaced Forest Haven. Residents with intellectual and developmental disabilities were no longer confined to a large institution, but in some cases the community-based alternatives they had been placed in were little better.
It wasn’t only a problem of quality assurance, but also culture. Since the only system that had existed for D.C. was Forest Haven, changing the way staff and city officials thought about how to serve residents with intellectual and developmental disabilities was an additional challenge.
“Here in the District, there was no state system of community services,” says Laura Nuss, an expert on disability policy who later joined the D.C. government. “So when you bring people out of an institution, the same people who are now running the community system were the same who ran the institution and the same people who worked in the institution.”
In 2000, a senior D.C. official admitted that the city’s new network of group homes were little more than “mini-Forest Havens.”
The same year that the Post ran its expose on the darker side of the city’s group homes, Kelly Bagby, an attorney with University Legal Services, got a call from Bread for the City, a social services organization. They had found a homeless woman with an intellectual disability. Could Bagby help her?
Bagby quickly determined that the woman had been at Forest Haven, and as such enjoyed the protections secured through the 1978 ruling in the Evans suit. But one call to the the Mental Retardation and Developmental Disabilities Administration (MRDDA), the city agency then in charge of residents with disabilities, made clear that they knew little about her; they had lost track of many former Forest Haven residents.
The revelation spoke to the broader challenges in D.C. after Forest Haven closed, says Bagby.
“There was almost no infrastructure,” she says. “Not only had they lost where everyone was, they didn’t have meaningful policies, procedures, incident investigation systems. They didn’t have any way of dealing with emergencies. They had no infrastructure, which is kind of hard to imagine because Forest Haven had closed about eight years before.”
Bagby and University Legal Services, a nonprofit legal assistance organization, joined the case as the attorneys for the former Forest Haven residents, and immediately plunged into what would be two years of negotiations with D.C. officials to quickly improve the system of care and protection for residents with intellectual and developmental disabilities.
“As hard as we were trying and as fast as we were trying to do all that, people were still dying unnecessarily. It was the most traumatic time in my professional career,” she recalls.
When Bagby came on the case in 1999, she says there were roughly 800 former Forest Haven residents alive from the 1,050 that were part of the original Evans lawsuit. But when she left seven years later, that number was down to 600.
A leadership vacuum
In late 2000, Judge Stanley Harris — who had taken over the Evans case five years earlier — appointed an Independent Court Monitor to help D.C. comply with the numerous related court orders.
Six months later, in the wake of the revelations of the group home deaths, D.C. and the attorneys for the former Forest Haven residents agreed to broad plan that would help the city improve services for residents with disabilities — and the quality control mechanisms needed to make sure the services were working.
A key part of the agreement was the creation of the Quality Trust for Individuals With Disabilities, an independent organization charged with advocating on behalf of residents with intellectual and developmental disabilities and monitoring the city’s compliance with the Evans lawsuit. D.C. agreed to pay $31 million over 11 years for the creation and operation of the Quality Trust.
“When I came into the District in 2002, there was no system. There were people who were working and had jobs, but the idea that that was an organized, purposeful effort to support people with disabilities is a stretch of the imagination,” says Tina Campanella, who was brought on to head the Quality Trust after its creation.
The D.C. government had failed for a number of reasons, including a financial crisis that had struck the city in the mid-1990s and a bureaucracy that left MRDDA, the agency in charge of residents with disabilities, with little authority and ability to properly coordinate efforts with other government offices.
“The city was under federal control for a long period of time. I don’t know how much the federal government cared about what was going on. Funding was incredibly weak. If you don’t properly fund the system, you can’t manage it. And because operations were in the Department of Human Services, which was a huge agency, I don’t think there was the kind of concentrated focus on who’s running the system,” says Nuss, who came to MRDDA in 2006 as a consultant and took over the agency in 2010.
Leadership was also a significant problem: From the time Forest Haven closed through to the mid 2000s, there were close to 20 different directors at MRDDA — some lasted barely a year, some made it 18 months.
That made making necessary changes incredibly challenging, Nuss says.
“[The staff] had lived through all those different directors, and from their perspective they had an ingrained behavior pattern of ‘We’re not going to go along with these changes because as soon as she leaves it will go back to however else it was,’” Nuss recalls.
Fixing the bureaucracy
The problems in how D.C. provided services to the former residents of Forest Haven continued after the 2001 court agreement.
In 2004, Judge Ellen S. Huvelle — the third federal judge to handle the Evans case — said that D.C. agencies were not coordinating effectively in serving the disabled. From August to October 2005, four former Forest Haven residents died “because they did not receive timely and competent health care,” according to a court monitor’s report.
By 2006, the Evans plaintiffs not only asked Huvelle to hold D.C. in contempt — again — but that she consider putting MRDDA in receivership, essentially handing control of the agency to an outside party. It wouldn’t have been a first for D.C. — when Williams became mayor 1999, there were five city agencies in receivership.
As Williams fought the proposed receivership for MRDDA, two D.C. Council members who would eventually succeed him as mayor — Adrian Fenty and Vincent Gray — passed legislation establishing a new cabinet-level Department on Disability Services. The idea was to replace MRDDA, which was under the Department of Human Services, with a new, more independent agency.
The bill, they said, “promotes the accountability, leadership and stability necessary to guide an aggressive, sustainable, District-wide transformation initiative within the mental retardation and developmental disabilities system.”
In 2007, Fenty took office. In August of that year, Judith E. Heumann, an experienced professional in the field of intellectual and developmental disabilities, took over the new Department on Disability Services, with Nuss as her deputy. Advocates hoped that the new agency and its new leadership would signal a change in direction — and an improvement for residents with intellectual and developmental disabilities.
But in 2009 D.C. Attorney General Peter Nickles surprised those advocates by filing a motion asking that the Evans case be dismissed. He argued that the bar set by the 1978 ruling was too high, and that even though the city had not met it, it had made enough improvements in providing services to disabled residents to earn it the chance to escape the lawsuit.
The following year, Judge Huvelle angrily denied Nickles’ motion.
“I am not going to vacate the entire 30 years of court orders entered into by the District of Columbia on the grounds that in the last year significant progress has been made,” she said.
D.C. and the Evans plaintiffs agreed to a new plan setting out 70 conditions that would have to be met for the lawsuit to be dismissed. It had been close to 20 years since Forest Haven was totally shuttered.
‘Slow-moving and resistant’
Attorneys and advocates give a variety of explanations on why those 20 years were so turbulent and, in some cases, deadly for the former residents of the institution. Bureaucratic hurdles, lack of leadership and weak funding are cited as likely factors.
Some city officials argue that after Forest Haven closed, they were left with a system that either didn’t exist or had to rebuilt from the ground up. Either way, it was a process that would take years — if not longer.
Speaking at a congressional hearing in 2006, Robert Gettings, then the director of the National Association of State Directors of Developmental Disabilities Services, made this point: “One of the central lessons that can be drawn from the sad history of the Evans litigation, and indeed from similar class action lawsuits across the country, is that deep-seated systemic failures won’t be resolved by a series of quick overnight fixes,” he said. “The service system needs to be rebuilt from the bottom up, and that requires commitment and sustained leadership from government officials at all levels, especially top elected and appointed officials.”
But for Joe Tulman, who served as an attorney for the Evans plaintiffs for more than a decade starting in 1988, the lack of commitment and leadership from 1991 to 2010 was indicative of a bigger problem.
“The system is relatively slow-moving and resistant,” he says, “when you have a constituency that has little political power.”
Steven Powe’s apartment in a two-story building in the Brentwood neighborhood of Northeast D.C. is modest and sparsely furnished, but that doesn’t much bother the 57-year-old. When he moved in five years ago, it was the first time the he had ever lived alone.
“My mom didn’t want me to move, because she was afraid something would happen,” he says. “I could still go back to her house if things don’t work, but I’m hoping I don’t have to do that.”
With a part-time job and assistance from an aide the city pays to check on him, Powe — who has a developmental disability — enjoys a degree of independence that may not otherwise have been available to him only years ago.
The aide mostly ensures he has enough groceries, and Powe gets help with cooking from his family. But otherwise, he votes in local elections, participates in Special Olympics, likes going to the movies when he can, and has a special fondness for comic books — so much so that he’s rented out a storage space for his growing collection of Supermans, Batmans and other titles.
“There have been ups and downs since I was born,” he says. “But it’s gotten a little better since I got my own job and my own place. I’m a little more independent.”
In many ways, Powe’s newfound independence is emblematic of D.C.’s decades-long struggle to better incorporate residents with intellectual and developmental disabilities into the community. No longer is it assumed that those residents can be best cared for and live out their days in segregated and isolated institutions.
“Just like everyone else, people with intellectual [and developmental] disabilities have strengths as well as challenges, and we can’t just focus on the things they can’t do,” says Bob Dinerstein, a law professor at American University who specializes in disabilities. “That’s been a big development, to get away from thinking of people in terms of what institution or building or program they need, but what support do they need to have the kind of life they want.”
Decades after closing Forest Haven and multiple stumbles in offering residents with disabilities meaningful alternatives — not just in where they live, but also what they do every day — D.C. finally seems to be figuring it out.
According to United Cerebral Palsy, which publishes an annual report ranking how well states serve residents with developmental disabilities, from 2007 to 2015 D.C. jumped 41 spots, going from one of the worst states in the country (49th place in 2007) to one of the best (8th in 2015). It was the single biggest improvement the organization says it has seen.
It hasn’t gone unnoticed among many advocates for people with disabilities, including those who were at the forefront of closing Forest Haven and keeping on the city to live up to the expectations of the Evans lawsuit.
“The District has come light years, and I think we’re probably in the forefront nationally even though there’s so much work that’s left to be done,” says former D.C. Mayor Vincent Gray, who before entering politics in 2005 spent decades advocating on behalf of residents with intellectual and developmental disabilities.
“I think the District has made significant improvements,” echoes Tina Campanella, who heads the Quality Trust for Individuals with Disabilities, the organization created in 2001 to monitor the city’s efforts to comply with the Evans lawsuit.
The long-awaited improvements are visible on the ground in lives like Powe’s. He lives alone, holds down a job and enjoys his hobbies. It is, in many ways, an utterly normal life.
Gray and other advocates say the improvements have been a product of stable leadership at the D.C. Department on Disability Services, the adoption of a Medicaid program that allows more federal funding to flow into the city to provide services for disabled residents, and consistent pressure from the court and numerous organizations — including one made up of residents with intellectual and developmental disabilities.
Not only are these improvements allowing residents like Powe to live independently, but they’ve also sparked hopes that this will be the year the a federal judge dismisses the 40-year-old Evans lawsuit.
‘You need consistent leadership’
When Laura Nuss was approached with an offer to take the position of deputy director of the D.C. Department on Disability Services (DDS) in 2007, she says she wasn’t enticed by the opportunity. Neither were many other professionals with careers comparable to hers: three decades of work in the field in as many states.
“Nobody would take the position on because of the history here in Washington,” she says.
DDS had only been created the year prior to replace the troubled Mental Retardation and Developmental Disabilities Administration (MRDDA), an agency that had attracted national attention for its multiple stumbles in serving the residents with intellectual and developmental disabilities who had been brought into the city after Forest Haven closed in 1991.
“As far as the problems in the community system, that was well known by people in the field,” says Nuss. From 1993 to 1999, 116 people with disabilities had died in group homes overseen by the city.
For an experienced administrator like Nuss, who speaks in a steady and confident tone, it could have seemed like a great opportunity to lead a new agency. But that professional experience cut both ways: She could envision what it would take to fix the agency, but she could also spot the land mines in the way.
But after prodding by Nancy Thaler, a former colleague of hers from Pennsylvania who at the time led the National Association of State Directors of Developmental Disability Services, Nuss took the leap, starting in the position in August 2007, working under DDS’s inaugural director Judith Heumann.
Three years later, Heumann departed for a posting at the U.S. State Department, and Nuss was elevated to the top spot at DDS. Six years later, Nuss remains the director, a piece of information that would otherwise be unremarkable if not for one fact: In the years after Forest Haven closed, MRDDA cycled through upwards of 20 directors.
“There was a lack of stable leadership,” says Sandy Bernstein, an attorney with University Legal Services, which has represented the former Forest Haven residents involved in the Evans lawsuit since the late 1990s. “Every few months there was a different director of MRDDA.”
Advocates for the disabled say the constantly revolving door at MRDDA helped stymie much-needed reforms and improvements in how D.C. served disabled residents. Having stability just at the time that DDS was created as a cabinet-level agency — MRDDA had been under the D.C. Department of Human Services — would be key to its eventual successes
“You need consistent leadership so that you have someone saying, ‘No, we have to get this done.’ When you don’t have consistent leadership you don’t marshal your forces even though everyone is probably operating in good faith,” says Joe Tulman, who also served as an attorney for the plaintiffs in the Evans lawsuit.
Opening the federal funding spigot
It was crucial that Nuss stuck around not only for the stability that DDS needed, but also because of the specific expertise she brought to the job: She knew how to wrest more funds out of the federal government to pay for the costly services many people with developmental disabilities need.
Prior to coming to D.C., Nuss had worked for the State of Connecticut managing its Medicaid Home- and Community-Based Waivers. The program is vital for states in providing a range of community-based services for residents with intellectual and developmental disabilities — exactly the types of services that allow those residents to be more fully integrated into their communities.
In 1971, Congress created a Medicaid funding stream for “intermediate care facilities,” allowing states to receive matching federal funds for care provided to disabled residents through facilities of four beds or more — such as group homes. While advocates say these are an important option, they also criticize them as being more institutional in nature. At the time, if states wanted non-institutional alternatives, they would have to use local dollars to pay for them.
It wasn’t until a decade later that the waiver program was created, allowing states similar funding for alternatives, including home-based care.
“The Medicaid waiver is in essence an alternative to your institutional services,” explains Nuss. “Under a Medicaid waiver program, what you do is you design a menu of services. It’s like going to a restaurant. You have an array of services that can support people in a variety of ways.”
In short, using the waiver program lets states move more people into the community, providing them services and opportunities in settings that more closely resemble traditional homes and workplaces.
Despite the Medicaid waiver’s flexible funding for states that want to deinstitutionalize, D.C. only started working with the program in 2000 — and only after a federal judge forced the city to do so.
“[D.C.] got a late start on some of the development of community alternatives because it was the last jurisdiction in the country to take advantage of the Medicaid waiver program,” Dinerstein says. “The District couldn’t get it together.”
In 2007, D.C. spent $25 million in local funds for services that could have been paid for through the waiver program, which covers 70 cents of every dollar spent.
Nuss fixed that. She worked to expand the use of the Medicaid waiver, as well as increase reimbursements rates to attract more service providers. When she started, only a few hundred people were enrolled — and the program had a $27 million budget. “Today,” she says, “the budget is about $190 million and there are 1,662 people enrolled in the program.” That amounts to more than $115,000 per person per year.
According to data from 2014, the expanded Medicaid waiver program has had a significant impact. That year, 84 percent of disabled residents living outside their family homes lived in waiver-compliant settings, the majority in homes with three or fewer people. At the same time, the number of people living in intermediate-care facilities such as group homes dropped by 51 percent relative to 2007.
“Having the waiver come to the District freed up a lot of funds, but more importantly it allowed providers to provide services in more integrated ways, to provide better quality individualized services in smaller settings,” says Bernstein. “That really made a huge difference.”
Pressure from below
For all the changes that were made within the D.C. government, there were also the outside voices constantly applying pressure and speaking up for residents with disabilities.
One of those was the Quality Trust for Individuals with Disabilities, the organization created in 2001 as part of a plan for the city to exit the Evans lawsuit. Under the plan, the Quality Trust received $31 million in funding from D.C. over 11 years for its work, which included advocating on behalf of residents with disabilities and monitoring the services they received.
But much of the pressure came from many of those residents themselves through an organization known as Project ACTION!
The group grew out of the Kennedy Institute, a school for residents with disabilities located in the Michigan Park neighborhood of Northeast D.C. It started in the 1980s, when some residents wanted to live independently from their families, and started gathering together to practice how to best make their case. It gained members after an adult education program run by MRDDA was quietly cut out of the D.C. budget, leaving many disabled residents without a necessary program — and searching for ways to make their voices heard.
“When they cut the budget, it kinda got us really fired up, and the first thing people wanted to know was, ‘What are you going to do about this? Who we going to see?’” recalls Ricardo Thornton, who lived at Forest Haven from 1966 to 1978.
Thornton had attended the adult education programs that were set to be cut — but were saved through the self-advocacy. He has since chaired and co-chaired Project ACTION!, helping lead the monthly meetings where attendees — mostly residents with disabilities — discuss everything from policies to practical problems they face.
In the years that Project ACTION! has been active, it has notched wins big and small. Starting in 2006, its members were instrumental in speaking on behalf of bills that removed certain terms they said were outdated — such as “retarded,” “wheelchair-bound” and “the mentally ill” — from city laws, policies and programs. More recently, they have fought to keep certain transportation subsidies they say are vital.
“The fact that they’re able to put a face and bring their humanity to what their situations are and what their lives are like has made an enormous difference,” says Rebecca Salon, the former director of the Kennedy Institute and current volunteer advisor to Project ACTION!
Tina Campanella, who heads the Quality Trust, says she’s noticed a shift in how pressure is applied on the government since she arrived in D.C. in 2002.
“When I first came, people [with disabilities] weren’t talked to,” she says. “They certainly weren’t the front line of where you went to learn what was happening and whether or not that was good or bad. Today, that is very different. People are at meetings, they are at the city council, they are at almost all kinds of different events where you’d find people without disabilities.”
That presence was a game-changer, she argues.
“I believe that when people are not seen and heard and accepted as equals, they’re made even more vulnerable,” she says.
Last July, United Cerebral Palsy published its 2015 “Case for Inclusion” report, which annually seeks to measure and rank how well the 50 states and D.C. are doing in providing services to people with intellectual and developmental disabilities. The report contained a surprising revelation: from 2007 to 2015, D.C. had improved from being one of the worst examples in the country to being one of the best.
And in October, D.C. officials told a federal judge that they were getting closer to closing out on the requirements needed to end the Evans class action lawsuit, which was filed in 1976. Of the 70 conditions set in 2001 plan to close out the lawsuit, attorneys for the city said it had completed all but five. Another hearing on the case is set for April 2016, where the city will be able to claim full compliance and ask the judge to dismiss the lawsuit.
When the class action lawsuit was filed in 1976, more than 1,000 Forest Haven residents made up the class. As of last October, fewer than 500 remain alive.
The possibility that the 40-year-old lawsuit could be dismissed provokes conflicting emotions among people on both sides of the case.
On one side, advocates credit the Evans lawsuit for not only forcing D.C. to close Forest Haven, an institution where residents with disabilities were warehoused and forgotten, but also setting a high bar for how those same residents should be broadly integrated into their community.
And while the city has moved toward that — especially in recent years — they worry that progress could stall without the pressure the courts can bring to bear.
“I think the District has made significant improvements, and I believe the structures they’ve put in place are good ones,” says Campanella. “I’m skeptical that structures can survive changes in politics and people. It’s very hard to be confident.”
But Laura Nuss, who has headed the D.C. Department on Disability Services since 2010, says the lawsuit has outlived its usefulness.
“It’s hard to describe the pressure being in a court case like this for as long as the District has puts on the workforce and our provider community,” she says. “Our level of monitoring and scrutiny is extraordinary. It goes beyond what’s healthy. It’s almost too restrictive.”
Even if Evans is closed out this year, what has been a four-decade process to integrate residents with intellectual and developmental disabilities won’t simply come to an end. People on both sides of the case say that while more residents have been moved into the community and have more options with what they do with their days, still too many of them are shut out of one of the most basic of daily routines: paid employment.
Financial support for this portion of the series was provided by the Solutions Journalism Network.
Forest Haven has been closed for 25 years. It remains as little more than a crumbling and abandoned campus, overcome by nature and visited often by vandals. But in the broader push to deinstitutionalize the lives of people with developmental disabilities, doing away with physical structures like Forest Haven is only one step.
“One thing I think we’ve done nationally a pretty good job of is moving more and more people into the community, but I’m not sure they’re of the community,” says Bob Dinerstein, a law professor at American University who specializes in disability law and policy.
“You can locate a group home on a residential street, that’s great, but if the only people in the lives of those who live there are either people paid to be there or family members, query whether you’ve really integrated them fully,” Dinerstein says.
In recent years, the push for full integration and inclusion of people with developmental disabilities has turned to employment. Many people with developmental disabilities say that full independence can only come when they have a job and a shot at financial security.
“People don’t realize it’s cheaper for people with disabilities to be working than to have us in an institution or in jails or not working,” says Steven Powe, a D.C. resident with a developmental disability who lives alone and works twice a week at a Safeway.
“You know what they say: If you teach somebody to fish for themselves, they fish for a lifetime. If you only give them a dollar a day, they won’t learn how to fish,” he says.
In late 2015, a majority of respondents to a survey by the D.C. Developmental Disabilities Council said employment was the biggest issue facing their community.
But when it comes to connecting people with developmental disabilities to jobs, many states are struggling. In 2013, only 19 percent of people with developmental disabilities across the country were participating in integrated employment services, which means they were in a traditional job or taking part in a program to prepare them for a traditional job. In D.C., it was 12 percent; in Virginia, 24 percent; and in Maryland, 40 percent.
But in Washington state, it was 86 percent. The story of what the Evergreen State has done to promote and secure employment for people with developmental disabilities can serve as a lesson and model for the rest of the country — as well as Washington, D.C.
‘Employment transforms people’s lives’
Jennifer Lonn still remembers when she got her first paycheck from Costco, where she works in janitorial services, cleaning buildings and sorting garbage at the retailer’s headquarters in Isaaquah, Washington, east of Seattle.
“I was surprised,” she says. “I was like, ‘Wow, I make that much a week?’” That was 12 years ago, and since then her pay has only gone up — she now makes $22.50 an hour.
For Jennifer, 42, the certainty of that paycheck was the means to a life she never had before. She was able to rent her own apartment, and last October she paid for a Disneyland vacation. It was also a significant evolution from what had come before it: For eight years, she worked in a sheltered workshop, a segregated work-like setting for people with developmental disabilities.
“Employment transforms people’s lives,” says Chris Brandt, who heads AtWork!, the organization that helped connect Jennifer to her job at Costco.
“It’s the way society judges whether or not you’re contributing, whether or not you have status, and whether or not you have respect. You don’t get to make a lot of choices in life for yourself if you don’t have an income,” Brandt says.
In many ways, employment is the last — albeit one of the most significant — elements of deinstitutionalization of people with developmental disabilities.
Twelve states, including D.C., have taken the significant step of closing their public institutions altogether, opting instead for placing residents with disabilities in small, community-based settings. But that alone is only one step towards the independence and inclusion that many people with developmental disabilities say they want.
When it comes to jobs, states have long relied on sheltered workshops, where groups of people with developmental disabilities will do repetitive, piecemeal work. Supporters of the workshops say they offer a safe place for people with disabilities to work with purpose. But critics note that most pay sub-minimum wages, and they say the programs are just as segregating as the residential institutions that many states are slowly closing.
But moving away from sheltered workshops to integrated employment has been a heavy lift for many states.
“Some states are still trying to figure that out. They’re happy that they have policies, legislation, memorandum of agreement of some kind that says, ‘We believe in employment first.’ That’s certainly the leading question: Do you believe that should be the first thing offered to an adult with developmental disabilities? But then you have to turn that into action,” says David Mank, an employment expert who heads the Indiana Institute on Disability and Community at Indiana University.
In turning promise into action, Washington state can offer states across the country lessons in how to best take the last gap in fully integrating people with developmental disabilities, Mank says.
“Washington [state] has been very intentional in saying, ‘We want to set goals, we want these jobs to be as integrated as possible, we’re willing to invest in the training and technical assistance, we’re willing to look at how we fund things to encourage more employment.’ It’s those kind of things,” he says.
Making employment a priority
When Margaret Lee Thompson’s first son, Dan, was born with Down syndrome in 1968, children with developmental disabilities did not have many opportunities. But Thompson never took no for an answer, and over the years she fought school administrators and government bureaucrats in three states — Wisconsin, Texas and her home state of Washington — to make sure that Dan was integrated into traditional classrooms and offered the same options as other students.
But as he neared the end of high school in the 1980s, Thompson faced a dilemma: If Dan wanted to work, his options were largely limited to sheltered workshops, an option his mother quickly rejected. “I knew Dan could work,” says Thompson, who lives in Redmond, Washington.
She gathered together with fellow parents, started raising awareness and eventually made a pitch to her congressman: States needed funding to pay for employment services for people with developmental disabilities. The media coverage of her advocacy for her son quickly reached a director at one of the area’s largest and most innovative employers.
“A month before Dan graduated from high school he started at Microsoft,” says Thompson.
Dan worked at Microsoft for close to 15 years, and Thompson says it gave him a sense of purpose he may not otherwise have had. The jobs could be mundane, but she says Dan always wanted to go to work.
“He loved the social aspect of work. He would come home with new vocabulary. I’d say, ‘Where’d you learn that?’ ‘Oh, Joe told me that at work.’ He had a good time. He didn’t even want to miss work to go on vacation,” she remembers.
When Dan died from a heart condition in 2006, Microsoft flew the flags over its campus at half-staff.
Thompson never let up her advocacy on behalf of her son and other people with developmental disabilities, and neither did many of the parents she worked with. And it showed.
Because of that advocacy, by the 1980s employment for people with developmental disabilities emerged as a political priority in Washington state, both at the state and county level. In 1992, the state laid out employment as a central element of its broader goal to incorporate residents with disabilities into their communities.
“Employment offers all people, with or without disabilities, access to other community citizens, a path out of poverty, and independence from service system,” read guidelines for services and funding from the Washington State Department of Social and Health Services to the state’s counties.
In 2006, Washington state fully implemented its Working-Age Adult Policy, under which funding for services for people with developmental disabilities had to focus on employment. “Services for persons under the age of 62 that do not emphasize the pursuit or maintenance of employment in integrated settings can be authorized only by exception,” reads the policy.
That was the start of what’s come to be known as the Employment First movement.
“Employment First is the idea that in any publicly funded system, its first service priority should be employment,” says Allison Wohl, director of the Association of People Supporting Employment First (APSE). Money should be spent on connecting people to jobs, and when they get one, providing support to help them excel. That’s known as supported employment.
Over the last decade, Employment First initiatives, executive orders and legislation have been adopted in almost all 50 states — including in D.C. And in 2012, the National Governors Association, then led by Delaware Gov. Jack Markell (D), made its annual initiative to help states increase employment of people with developmental disabilities.
These initiatives — and similar changes at the federal level — can have a significant impact because of the funding that is at stake. Since states largely contract out many services for people with disabilities to providers — both for- and not-for-profit — attaching conditions to funding can be an effective way to change what services are provided and what outcomes are expected.
Many state officials have also come around to the fiscal benefits of getting people with developmental disabilities into jobs.
“It’s actually more expensive to keep people poor, which is what our system does,” says Wohl. “It drives people with disabilities into poverty — and keeps them there.”
According to a 2007 study from Kent State University, supported employment programs yield $1.21 in benefits for every taxpayer dollar spent.
Finding internal champions
Sitting at his cubicle in a high-rise office building in downtown Seattle, Francis Theodore Flegel spends his days doing data entry and calling doctors on billing questions for his co-workers.
It’s a job he’s held for three years, and he says that he’s still surprised that he ever came to be one of the 10,000 people that work for the City of Seattle.
“It was by the grace of God that this job came about and I did my best to show them what I can do, they saw what I can do and they hired me,” he says, a smile spreading across his face. “I love what I do. I love the people around me.”
Flegel, 65, got the job because the job was created for him by Heather Weldon, who since 1998 has been scouring the city’s agencies for clerical and administrative tasks she could piece together to create employment for people with intellectual and developmental disabilities.
Through February, she had helped create positions for 97 people with intellectual and developmental disabilities in departments ranging from the publicly owned electric utility to the police department and mayor’s office. Their average wage is $15.90, the majority of the employees work between 20 and 40 hours a week — Flegel works 25 hours — and the average number of years they have remained on the job is nine years.
In the years she has done the work, she says there are two lessons that stick out the most. First: “It is the role of government to set an example.”
Many governments that promote supported employment and have implemented Employment First policies still rely on private businesses to do the hiring. But Weldon says that governments themselves need to play the role of employer too.
Second: “It’s really important to have an internal champion.” Without someone leading the charge and setting the example, she says, it’s easy for an idea — no matter how noble, like employing people with disabilities — to go unfulfilled.
“A lot of people like the concept, they like the philosophy of inclusion. But then it’s the, where does the rubber meet the road? How do we make this happen? And I say have one person who’s dedicated to it. Every company, whether the private sector or the public sector, can customize jobs in the way we have, but you just need someone to do it,” she says.
Cecilee Coulson of the Washington Initiative for Supported Employment agrees. “They can model what it is they want to see happen,” she says of governments. “Number one, they should be an employer.”
That’s a lesson that the Federal Communications Commission has taken to heart. Under the leadership of Chairman Tom Wheeler, the FCC has set up a program through which it hires people with developmental disabilities to full-time jobs at its D.C. headquarters. In the past two years, five people have been hired. (See the next section for a video on the program.)
“It’s important for everyone to take it on,” says Wheeler of hiring people with developmental disabilities. “This is a really simple question. It’s not a question of why. It’s a question of why not?”
For many people with intellectual and developmental disabilities, 22 can be a daunting age. That’s when their access to special education services under federal law ends, leaving the to navigate the world of adult services. For them, there’s sometimes a gap between the two — and the longer the gap goes on, the more likely it is that the person will lose skills and training that could be helpful in landing a job.
But in King County, Washington, a decade-old program known as School-to-Work seeks to manage this transition by offering training and vocational services in the final year of high school for students with developmental disabilities.
“What we have the opportunity to do with the School-to-Work program is get in there while they’re still in school and still have a safety net and bring them this service that they wouldn’t otherwise necessarily know about or be able to get without this connection,” explains Richard Wilson, who manages the program.
According to Wilson, since 2006 the program has worked with over 1,000 students in King County’s 18 school districts. On average, 65 percent of those participating in the program leave high school with a job. This year, Wilson expects 139 students to leave high school either with a job or already ahead of the curve on finding one.
“I’ll never forget the first person I saw got a job,” says Wilson. “It transformed her life. Her self-confidence, her pride, her day to day competencies all started to lift. If you think about it, that’s the way it is for all of us.”
Beyond policy prescriptions and lessons learned, Jennifer Lonn, who has worked at Costco headquarters for 12 years, thinks there’s a more simple point to helping get people with developmental disabilities jobs.
“Trust us,” she says. “Just trust us special needs people.”
Decades ago, segregated institutions — both for living and working — were created because it was assumed that those with disabilities would fare best in an environment where they could be protected. But now many people with disabilities speak of being given choices and chances.
“We talk a lot in the disability world about the ‘dignity of risk,’ and we believe people with disabilities should be afforded that same dignity, to be allowed to fail and be allowed to try jobs and not be good at them instead of being assigned into one workshop, one provider for the rest of their lives and assume that they really can’t do much,” says Allison Wohl of APSE.
The transition from a system geared to protect to one structured to allow opportunities has not been easy, and many parents of people with developmental disabilities worry that they could be giving up the certainty and stability of sheltered workshops for the unpredictability of the traditional labor market.
“Workshop veterans and their family members realize that placing all workshop employees in private, competitive businesses is unrealistic,” says the Missouri Association of Sheltered Workshop Managers on its website.
But in some states, that transition is already happening.
Vermont was the first state in the nation to completely close its sheltered workshops in 2002. Other states have followed suit, and in recent years the U.S. Department of Justice has used its power to push states like Rhode Island, New York and Oregon to phase out sheltered workshops and move towards integrated employment as an alternative. This year, Maryland legislators debated a bill that would do away with the sub-minimum wages paid at many workshops. (According to the U.S. Department of Labor, over 228,000 people working in sheltered workshops make less than the prevailing minimum wage.)
The federal government is pushing the transition along in other ways. In 2014, President Barack Obama signed the Workforce Innovation and Opportunity Act, which in part seeks to incentivize states to promote integrated employment for people with developmental disabilities. One of the major ways it with the billions in Medicaid funding that goes to the states to pay for services provided to people with developmental disabilities.
“Over the last couple of years, the Centers for Medicaid and Medicare Services (CMS), has been issuing language that speaks to people making their own choices, having their own schedule, making choices big and small about how they spend their time and who they spend it with,” says David Mank of Indiana University, referring to Medicaid funding that goes to states to pay for services provided to people with developmental disabilities.
Margaret Lee Thompson, who got into advocacy after her son Dan was born with Down syndrome, says that for as difficult as some of these transitions are, they tend to pick up steam and support as more people with developmental disabilities are integrated into the workforce.
“If parents haven’t seen people [with developmental disabilities] working typical jobs, they don’t have role models. And once they get some role models, the whole thing starts to change,” she says. “I think people with disabilities have been underestimated for centuries.”
A process, not an end point
The deinstitutionalization of people with developmental disabilities is an ongoing process across the country, and different states have been successful in different ways.
In Washington, D.C., a lawsuit filed by a group of parents in 1976 led to the closure of its sole institution, Forest Haven, in 1991. Since then 11 other states have closed their public institutions. But D.C. remains near the bottom of national rankings when it comes to employment of people with developmental disabilities. In fact, the overall national average is low: 19 percent.
“It’s not an easy effort,” admits Laura Nuss, the director of the D.C. Department on Disability Services, on the city’s push to get people with disabilities into jobs. “It’s something we’re not done with, we’re not satisfied with our performance yet. But we’re making good strides.”
Washington state has had its own successes and failures in deinstitutionalization. While hailed for its progress on employment, it still operates four institutions that house some 800 people. (In December 2015, the existence and future of those institutions was the focus of a 6-part investigative series by King 5, Seattle’s NBC affiliate.) And even when it comes to employment, advocates admit that Washington state still has room for improvement.
In short, though the process of deinstitutionalization across the country is decades old, it is largely an unfinished process. And in many ways, advocates say that closing institutions and integrating people with developmental disabilities into their communities — in where they live, work and play — will take many more years.
In some states, like in Virginia and Maryland, people who come out of institutions face long waiting lists for community-based services.
“True integration is a tough thing to accomplish,” says Tina Campanella, who heads the Quality Trust for Individuals With Disabilities in Washington, D.C.
“This is a long-term effort,” echoes David Mank. “Things need to get instilled into the culture, and that takes time.”
As we worked on this series, we were constantly on the lookout for good examples of businesses or government agencies that have prioritized hiring people with developmental disabilities.
As we reported in the last section, for overall employment rates among people with disabilities to improve, both businesses and governments must make hiring a priority. In Seattle, we met Heather Weldon, a city employee whose entire job it is to create jobs for people with developmental disabilities. She’s been successful: In the 15 years she’s been at it, she’s created 97 jobs.
In this area, we heard of a number of possible examples. Both D.C. and Montgomery County have implemented Project SEARCH, a one-year transition program that connects high school students with developmental disabilities to internships and jobs. In Montgomery County, students have gone on to work for county agencies, while in D.C. they are being connected with opportunities at the Smithsonian Institution.
We also heard that the Federal Communications Commission (FCC), the agency that regulates everything from radio and TV licenses to broadband internet providers, had instituted a program to hire people with developmental disabilities. So we headed down to the FCC building in Southwest D.C. with a camera crew to see the employees in action, and ask two important questions: Why do this, and how difficult was it? Watch the video above to find out.
— Martin Austermuhle
Concept & Editorial Direction: Tara Boyle
Research & Reporting: Martin Austermuhle
Web Editor: Joe Warminsky
Radio Editors: John Ogulnik, Jacob Fenston
Forest Haven Photography: Pablo Maurer
Archival Photography: Washington Star/D.C. Public Library Washingtoniana Division
Other Photography: Martin Austermuhle, D.C. Department on Disability Services, Chris Brandt
Video Production: All Ages Productions. James Doolittle, producer; Gabriel Spitale, director-producer; Michael Lucas, camera; additional footage from Peter Swinburne
Special Thanks To: Chris Chester, Katherine Warminsky, Ashley DeJean, Michael Martinez, Elizabeth McMahon
Financial support for this project was provided by the Solutions Journalism Network.