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Unlocked: The Lois Curtis Story

November 27, 2010

A determined Georgia woman and her lawyer changed the landscape for thousands of institutionalized persons with developmental disabilities who yearn to live in their communities.

©Robin Nelson All rights reserved

 

Decatur, GA — Lois Curtis blew the chalk dust from her finished portrait and handed it to her young visitor. “That’s you!” beamed the 43 year-old self-taught artist. “I like to do pictures,” she exclaimed. Lois began sketching another face, of no one in particular, while humming a favorite tune to herself.

She might sketch a dozen pictures in an afternoon, or be content to write letters to friends, acquaintances, anyone for whom she might have an address. “Give me your address so I can write to you,” she said to her visitor as she reached for her ever-present cigarettes. “I like to write letters, too.”

Lois fills her days at the Peer Center in Decatur, a peer-run alternative to traditional mental health day programs. She visits the center nearly every day, often arriving before the doors open at 11 a.m. The center is filled with music, group activities and laughter, with an easy-going, self-directed air about it. It is a place anyone with disabilities is welcomed, where marginalized individuals can feel safe, respected and among friends who understand them.

Lois can usually be found outside at a picnic table, sketching another portrait she hopes will one day be framed and displayed on someone’s wall.

“Her paintings and sketches are amazing. They have this ‘folk art’ quality to them that is enchanting,” explains Lee Sanders, a career consultant who assists Lois several times each week with her self-employed art business. “She is so humble, yet she is really coming into her own as an artist now. Everyone in the disability community knows her name.”

Even the justices on the United States Supreme Court know of Lois. She was known as “L.C.,” in what is now referred to as the Olmstead Decision. Ten years ago, her story help clarify federal law for thousands of developmentally disabled individuals across the country.

“Lois was born to a family that was unable to adequately care for her, given the behavioral supports that she needed and the fears that her mother had for her safety,” explains Susan Jamieson, director of the Atlanta Legal Aid Society, who first met Lois in 1989.

“Lois struggled with school even though she loved being in school, due largely to behavior issues. At home, her mother was constantly calling 911 because Lois would wander off. She was extremely fearful for her daughter’s safety. Their neighborhood was not a safe place for a young girl to be out wandering around. When the police responded, Lois ended up either in jail or the mental hospital. She was in and out of the Georgia Regional Hospital’s child and adolescent unit from the time she was eleven.”

“Her story is typical of those who are developmentally disabled and also have behavior issues. They are often served through the mental health system by staff members who are only trained to deal with mentally ill patients, and who typically lack understanding of the particular needs of someone with a developmental disability. They treat people like Lois as though they have psychiatric problems. That was true twenty years ago, and it is still true today,” Ms. Jamieson said.

As a patient in the hospital, Lois was treated with psychotropic drugs, which kept her sedated and lethargic. “She sat around and didn’t do much of anything productive. The drugs sapped her energy. Occasionally she would go on day trips with patients who had mental illnesses, but mostly she sat around and smoked to kill time. It was an empty existence for her,” recalls Ms. Jamieson. “It was a scary place, especially for someone who didn’t belong there. Lois was basically warehoused in a hospital for psychiatric patients, not the developmentally disabled.”

Diane Cobb was a nurse at Georgia Regional Hospital in the 1980s. She clearly remembers Lois as a teenage patient: “Lackluster and isolated. She did what many of the patients did – walk about the hospital grounds unkempt and uncared for. Her hygiene was horrible. Lois was sullen and depressed. She was withdrawn into herself and rarely smiled. That’s how she survived that environment. She didn’t look forward to something she couldn’t keep, like a friendship with someone or a rapport with a staff person. There wasn’t any nurturing within the psychiatric unit, only more meds and endless monotony.”

By the time Lois was 19, Lois was desperately unhappy and wanted out. “She wanted what she knew others enjoyed – a life free from locked doors, fences, guards and restrictions of state mental hospitals. She wanted to live in her community, not behind steel doors,” Ms. Jamieson said. “She missed living in the home she remembered as a child, even though her home had not been very successful for her in the past.”

At one point in the early 1990’s, Lois was placed into a personal care home, but it lacked any of the necessary supports. “The home had no trained staff. It was completely inappropriate,” Ms. Jamieson explained.  “Her mother was pressured to take her back in. We fought to get her the support services she needed, but state officials refused to provide them. Lois was returned to Georgia Regional because there was no other place to go.”

Lois Curtis with Susan Jamieson, Legal Aid Atlanta attorney

“The doctors admitted that Lois and Elaine no longer met the state’s requirements for involuntary confinement, but they refused to release them to live within community-based programs. They said they could keep them in the hospital and provide whatever they needed there,” Ms. Jamieson said.

“They said the women were not eligible to be placed on the Medicaid waiver waiting list because they weren’t currently in hospitals that were primarily centered on mental retardation. Lois and Elaine had been in the wrong institution. It wasn’t their fault. They should never have been in that hospital in the first place. We wanted to get them into an alternative to the hospital environment, some place where they could thrive.”

Even when their names were eventually added to the waiver waiting list, officials warned there was little likelihood they would receive services any time soon.  “The state’s position was, if they could serve the women in an institution, that was all the obligation the state had. They weren’t required to serve them in any other setting. They said the women had no legal rights to more than what they what already had.”

In 1995, with the Legal Aid Society’s help, the two women sued the State of Georgia under a claim with the Americans with Disabilities Act. Ms. Jamieson, with co-counsel Stephen Sylvia Caley and Charles Bliss, all legal aid attorneys, maintained that individuals with a mental or physical disability could not be forced to remain in an institutional environment if they could be served in a more integrated, community-based setting.

A Federal District Court judge in Atlanta agreed. The state appealed, citing a lack of funds, only to be told that failure to provide integrated community services for the two women violated the Americans with Disabilities Act.  Undaunted, the state appealed to the U.S. Supreme Court, seeking to reverse that ruling.

The Supreme Court ruled that ‘unnecessary institutionalization’ amounted to discrimination and unjustified segregation, thus violating the women’s civil rights. “Institutional placement of persons who can handle and benefit from community settings perpetuate unwarranted assumptions that person so isolated are incapable or unworthy of participating in community life,” the decision read, in part.

“It became known as the ‘Olmstead Decision’ because that’s who we first filed suit against, Tommy Olmstead, Commissioner of Georgia’s Department of Human Resources,” explained Ms. Jamieson. The ruling was seen as a mandate to free tens of thousands of people with disabilities from undue restraint in institutional living, those who met the qualifications and had the desire to leave,” she said.

The landmark decision challenges state and local governments to develop more opportunities for disabled individuals through cost-effective community-based services. It interpreted ADA regulations as requiring states to administer services, programs and activities “..in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

After Elaine Wilson secured her freedom and state-funded community services, she moved into a private home with a friend and care-provider. She became an advocate for persons with disabilities and enjoyed an active life until her death in 2004.

Lois, however, bounced from one personal care home to another. “She lived in a succession of group homes and host homes in the years following the Supreme Court’s ruling,” recalls Jessica Long, who began working as a job coach for Lois in 2004. “The year I met Lois, she was relocated at least ten times that I can remember, for a variety of reasons. Some of the reasons were very arbitrary.”

“The common factor was that no one knew exactly what was needed. The system didn’t work because not enough people in the state government cared to make it work right for people like Lois,” said Ms. Long.

Today, Lois enjoys her days at the Peer Center and working on her art. She relaxes in her ‘host home’ with crayons and coloring books as she snuggles on a sofa in a brightly furnished sunroom. Lois sleeps in an antique oak bed in a private room on the ground floor.  She washes her own clothes. Hollis Baugh, her care provider, makes sure Lois eats well-balanced meals and gets to where she needs to be. She takes weekly art classes at a nearby hobby shop.

“She’s happy with herself and loves what she does now,” notes Ms. Long, who helped Lois uncover her artistic talents. “When she was in the hospital, people would say ‘yeah, she draws pictures, it keeps her busy.’ In the time that I’ve known Lois, her art has blossomed. She refers to herself as an artist now, and she knows people really like her work. Her eyes light up when people pay for her paintings and note cards. She knows when she’s finished a good one. She’s always asking people if she can draw their portrait for three dollars.”

Smartly matted and framed ‘Lois Curtis’ originals are proudly displayed along the walls at Kilpatrick Stockton, a prominent Atlanta law firm.  A ten-member ‘micro board’ meets regularly to discuss Lois’ needs and goals, and has organized several gallery shows of her work.

“Lois serves as the president of her own board and loves to call the meetings to order,” notes Patty Cassidy, a micro board member who is also a community and employment consultant for persons with disabilities. “She’s told her board she wants to have a home of her own someday, to have her own money and make her own decisions. Purchasing a home of her own is not out of the question. It will take some creativity, but it can happen. Then Lois can have her services in her own home and live with more independence.

“She receives numerous invitations to be a guest speaker at conferences across the country,” notes Ms. Sanders, who often accompanies Lois on the out-of-town speaking engagements. Her artwork is often sold during a conference from a small table in the lobby. “Some pieces sell for hundreds of dollars. People are thrill to meet her and take home some of her artwork. They are so impressed with this woman who helped change the landscape for thousands of people with disabilities.

“Selling her pictures really gets her excited. She loves the attention and caring she senses from others.” Proceeds from the sale of her artwork are reinvested into her business for paint, pastel chalks, sketch pads, mats and frames, she added.

“Lois Curtis is a success story. She has come a long way from her years at the regional hospital. But there are thousands more like her who could thrive in community living programs if they were more available,” notes. Ms. Jamieson.

“Back then, people didn’t have the time or patience with someone who acted different, if you weren’t what society said was normal you were deviant,” observed Ms. Cobb, who has since retired from a 35-year career in mental health.

“Years ago, when people had a mental retardation diagnosis they didn’t act the way we wanted them to act. They didn’t fit into our network, so we gave them a label. Society seemed to say, ‘we can hear about you, but as a society we don’t want to see you. If there’s a place that will take you, that’s where we’ll put you.’ Some people did it because they had no choice; others did it to get the family member out of their hair. And there were the ones whose condition had taken a toll on the family as well as the individual, so for the well being of both, they went into the hospital.

“Warehousing them in a hospital isn’t good. Getting them into the community is better, as long as it’s with people who know what they’re doing and the individuals get the services they need.”

Despite long waiting lists for support services in many states, things are looking better, says Ira Burnim, Director for the Judge Bazelon Center for Mental Health Law in Washington, D.C.

“The good news is, community integration has become a prime concern now across the country. The Olmstead case makes it very clear that compliance with the ADA is a priority. Olmstead is now a household word, and the decision makes it very clear what our national policy is,” he said.

“The bad news is that there hasn’t been as much change on the ground by this time as we had hoped. The federal government has dealt with this very gingerly. Enforcement has been weak, perhaps because the Health and Human Services agency doesn’t have a civil rights agenda.

“The Department of Justice is charged with ensuring that the ADA is implemented. It hasn’t really taken the leadership role that it should, but I believe this administration is committed to changing that.

“If the DOJ picks up the mantle of Olmstead and really tries to secure states’ understanding of what compliance requires, it will dramatically change the landscape in the country. I’ve heard from this Justice Department that they plan to make Olmstead a high priority. We are now at the stage of seeing how this plays out.

“There are ‘pockets of brilliance’ in communities across the country where people with developmental disabilities are integrated into the community, but it’s not consistent. There are also people in terrible situations – at home with no support, or stuck in awful institutions for no other reason than governmental ineptitude or public meanness.

Funding is not the issue, Mr. Burnim insists. “It shouldn’t cost much more than what it costs now, because you shift the money. What makes the difference is whether the leadership of the public systems are progressive and effective, and whether they really believe in community integration.

“There’s a lot of money in the disability service systems that is badly spent on segregating people in institutions and dead-end day programs. If you redirect all that money and effectively promoted community integration, it might require a little more money at first, but most of the steps we need to take can be done with existing dollars. The problem is, there’s a lot of vested interests in maintaining the current system. Some providers just don’t want to change what they’re doing.”

In Mr. Burnim’s opinion, progress requires a different mindset.

“It’s really the question: Do you think people with disabilities can live somewhat independently, with support that turns out to be a relatively cheap proposition, and do you think it’s a priority?

“Most of the time people think, on some level, that the mentally disabled are impaired, they don’t understand what’s going on, so what difference does all this make? Even if they were persuaded that it was important to give folks with a disability a real shot at an existence like the rest of us, as much as possible anyway, they think it’s a nice idea – but there are so many problems in the world, and so many people who are not impaired that we should worry about. It’s a question of understanding and priorities.

“Institutions severely limit people’s ability to enjoy what makes life meaningful — the everyday joys of family, friends, work and leisure. When you’re institutionalized, you’re cut off from all that. What people value most in life, institutionalization takes away.

“When you put people in institutions it is a very powerful social message. People who are institutionalized tend to be devalued due to the fact that they are institutionalized. The message is, ‘there must be something really wrong with them, they’re incapable, so unfortunately we need to write them off.”

“I was actually proud that the Supreme Court got it so right,” said Mr. Burnim. “People need to see disabilities as a civil rights issue.”

Lois Curtis will hopefully be in her own home one day. Her friends and supporters will celebrate just how far she has come. And Lois will be dancing in the middle of them, smiling for the entire world to see.

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4 Comments leave one →
  1. February 6, 2015 5:44 pm

    What a really great story. Many in the disability community know the Olmstead decision; now we get to know more about one of the individuals behind the decision. I have so much respect for you, as a journalist, to tell her story with so much dignity! More often than not, the media portrays people with disabilities as pitiful stories or trinkets of inspiration. To talk about her as a person is commendable, especially since it happens too rarely. You have also managed to plainly highlight the failings of our system. I have a friend whose daughter is falling through the cracks. My friend is trying so hard to do right by her daughter but the supports are just not there! It’s hard on my friend and it’s hard on her daughter. I truly hope things will change sooner rather than later. I am trying to do my part – thank you for doing yours!

  2. Andrell Crowder-Jordan permalink
    February 7, 2015 10:52 pm

    Wow it is so good to see Lois looking well and doing what she enjoy and that her Art it been 12 years since I worked with her At FEA I knew she had no business there just base on her wit and intelligent. So glad to she made it out she always said she would. Love Ms Andrell

  3. Restless Hands permalink
    March 21, 2015 4:48 pm

    Reblogged this on Restless Hands and commented:
    A good essay about an important event in the history of Disability Rights

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  1. In Honor of Black History Month – A Biography of Lois Curtis | Hammer Residences, Inc.

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