The personal stories of a few of the thousands of people whose lives have been improved by the Olmstead decision and the Department’s Olmstead enforcement work.
In October 2010, the United States settled its case against the State of Georgia, resolving claims that persons with mental illness or developmental disabilities were harmed by unnecessary confinement in State hospitals. The State agreed to create meaningful community services systems, including crisis services, case management, housing supports, and other services supporting full integration in daily life for persons with mental illness or developmental disabilities receiving State services. Here are stories of some of the people who have benefitted from the Georgia agreement.
"Everybody in the complex knows John," chuckles his father, Vaughn. "He's a happening guy." John frequently sits on his balcony chatting with passersby. Many neighbors greet him by name and wave. For a decade before John, 36, moved to his own apartment in Athens, he lived in Central State Hospital in Milledgeville, Georgia. John has a serious intellectual disability and requires assistance with daily activities. The aggressive behavioral issues that led to his hospital stay are now managed by his community caregivers and by access to a prescription medication that was unavailable to John in the hospital.
With John's community caregivers, "he's gotten to do things that we would have been scared to death to do," Vaughn says: field trips to the Georgia Aquarium in Atlanta; to the park; to see a band play; to a sports bar. John spends more time with family now that he lives in the community. Sometimes, his parents join John and his caregivers on outings; John also visits his parents at their home in Eatonton, 50 miles from Athens. John and his dad talk every morning by phone, and he regularly sees his sister, Laura, who lives in Athens. John also routinely sees his cousin, Jason, at church, and several other cousins, aunts and uncles at family gatherings.
Comparing John's life in his own apartment to his former life in the hospital, his dad says: "He has a much greater sense of independence. And he's happy. That's the main thing. He just seems to be really happy."
A simple lunch date at a local restaurant was once unimaginable for Louise Darley and her daughter, Cindy. But now that Cindy lives in a home a mere 20 minutes from her mother, the two have met for lunch weekly, accompanied by Cindy’s ever-present caregivers. One such meeting in late October 2012, when Cindy greeted her mother with a hug, was particularly meaningful for Mrs. Darley. “Cindy had never done that before,” she said. “But since she’s been living nearby and I’m able to see her more, I now believe Cindy knows who I am.”
Cindy, who is 31, has severe developmental delays and needs assistance with many basic tasks. “You can’t ever leave her alone,” her mother said. “She doesn’t know to look both ways before stepping into the street. She doesn’t know to avoid touching a hot stove.”
For years, Mrs. Darley and her husband, Ashley, had cared for their daughter at home, but by the time she was 16 her aggressive behavior had worsened, prompting her parents to place her in state care. Until last year, she was residing in Southwestern State Hospital in Thomasville, Georgia, 85 miles away from her parents’ home in Dawson.
In July of 2011, shortly before her father died, Cindy moved into her current home, which she shares with her caregivers and three roommates. Before the move, her parents had been nervous, fearing she would be subject to abuse in a smaller setting. But now Mrs. Darley couldn’t be happier, and she is especially glad Mr. Darley lived long enough to see Cindy’s new surroundings.
“I just really feel like the Lord has been a part of this process,” she said. “It’s great having Cindy so much closer and being able to see her more often. But my biggest concern is her well-being, and I can see that she’s being taking care of. And she just seems really satisfied. That’s important to me.”
In July 2011, DOJ signed an agreement with Delaware to transform that State’s mental health system. The agreement will help more than 3,000 individuals move into the community and out of Delaware’s state-operated psychiatric hospital and other state-funded psychiatric facilities or avoid having to enter these institutions to get needed services. Here are the stories of a few of the people who have already benefited from the agreement.
Rose is a 65-year-old woman who was formerly homeless. She spent two and a half years at the Delaware Psychiatric Center. She was offered a community placement, due to the agreement, in October 2011. Rose is now living in an apartment and receiving community services, which she describes as “more like life in the past.” Rose says she treasures “being able to go where you want” and “having anyone over without getting someone else’s approval.” She says it is the little things that mean the most. “I now have the right to just live and the freedom to open and close doors.” Rose says, “I love it here,” where “I can have neighbors and friends in the community.” Asked about the differences from the state hospital, Rose said that she “feels a lot safer here” and that she “is no longer scared” and in a “constant threatening situation.” Rose is currently helping organize a women’s wellness group and feels that she now has “the right to just live.” Asked how the settlement agreement affected her life, Rose said: “Thank you for giving me back my life.”
Donald, who has schizophrenia and spent four years at the Delaware Psychiatric Center, has successfully moved to his own apartment, with the help of intensive community services provided under the settlement agreement. He is able to do his own cooking, shopping, and laundry. As Donald says, he is “now treated like everyone else.” He said that, after years in the psychiatric center where all decisions were made for him and life “can break you,” he now feels that “life is going smoothly.” Donald knows his neighbors and has made new friends. Asked about how the settlement agreement affected him, Donald responded: “Independence means being able to accept friendship from other people.” “I’m seen as a together brother.”
In January 2012, the Department reached a settlement agreement with the Commonwealth of Virginia to transform its system for serving people with intellectual and developmental disabilities from one that is heavily reliant on five institutional Training Centers to one that emphasizes community-based services. The agreement, which is currently pending court review, would help over 5,000 people move to the community or remain in the community with appropriate supports. Below are the stories of a few people whose lives have been affected by services similar to those that will be provided under the settlement.
Stefon is an 18-year-old with a profound intellectual disability and visual, orthopedic, and language disabilities. Although his support needs are serious, they are all being addressed well in the community. Stefon graduated from his local high school, attended his senior prom, and has won national praise for his participation in Special Olympics. As his mother states, “Stefon is living a meaningful and rich life even though he has profound and multiple disabilities.”
With the supports of Virginia’s Medicaid Waiver for people with intellectual disabilities, Stefon is able to live at home with those who love and support him. As his mother states: “Receiving a Waiver literally changed our lives. Stefon is able to live an independent life doing the things he enjoys . . . My son’s life is significant; he has affected the lives of many people that he has encountered in the community.”
James and Elaine are the parents and legal guardians of Doug, a 41-year-old man with Down syndrome who has serious cognitive disabilities and requires assistance with bathing, dressing and other activities of daily living. Doug lived at the Southeastern Virginia Training Center (“SEVTC”) for 20 years. In 2010, Doug received a Medicaid Waiver and moved to a small group home near his family.
James explains, “I was very afraid when we began to consider community placements for Doug.” While at SEVTC, Doug had to use a wheelchair, but now he walks all the time. After a very smooth transition, Doug no longer needs to eat his meals in a pureed form. He now gets great joy from eating solid foods, especially pancakes, hamburgers, and chocolate cookies. Doug enjoys weekly trips to the bowling alley with his friends, shopping trips, and meals at restaurants in the community. According to James, “quite simply, the services being provided have exceeded my expectations by leaps and bounds, and Doug is happier and more active than I ever imagined was possible.”
Marisa is a 27-year-old with a degree from the Northern Virginia Community College who is now working toward a Social Work degree. Marisa has cerebral palsy, which affects all her limbs and her speech. She uses a power wheelchair to get around and needs assistance with nearly all her physical needs. Before she received a Medicaid Waiver for community-based services, Marisa relied almost entirely on her single mother to provide the physical care she needed. Now she has the supports she needs to live at home and do the things she wants to do, including volunteering, giving back to the community, and doing the everyday things she needs to do to be independent. “I hope to be even more independent. . . I want to help families and individuals navigate the system to obtain the services they need.”
The Department has filed briefs in support of private suits challenging states’ refusal to provide community services to people with physical disabilities in order to keep them out of nursing homes. These are the stories of a few of the people who are living in their communities as a result.
At age 47, Michele was struck by a drunk driver while riding her motorcycle, and she became quadriplegic. While in the hospital, she applied for Florida’s spinal cord injury Medicaid Waiver program to get services in her home. But when she got word that she would have to wait about five years before getting services, the future seemed dim. “After my accident it was vitally important for me to quickly get back into a routine and become integrated back into society, and I was anxious to be at home in my familiar environment.”
Because her family was able to provide around-the-clock care, she was able to live at home. But when her personal circumstances changed and she no longer had all of the support she needed to avoid placement in a nursing home, Michele tried again to get community-based services. She was told there were insufficient funds for those services, but that if she entered a nursing home for ninety days, she would become eligible to receive community-based support services to move back out. “I feared that in the process of being forced into a nursing home that I would lose control over my routines, over the things that I enjoyed to do, and essentially be helpless and have less joy in my life.”
Michele filed, and won, a lawsuit under the ADA and Olmstead, requiring the State to provide community-based services without requiring her to first move into a nursing home. DOJ filed a brief in support of her claim. Today, Michele is still living at home with the community-based services she needs.
“Olmstead allowed me to stay at home versus being forced to be institutionalized. To be able to remain in the community means all the difference in the world. It gives me the freedom to live as normal of a life as I possibly can after my life altering accident.”
After she broke her neck and back in a 1989 automobile accident, Nena became paralyzed and uses a power wheelchair. She has a neurogenic bladder and bowel and relies on the use of incontinence supplies. Realizing that her parents were getting older and one day would not be able to care for her, she made the decision to live independently.
“I wanted to know that I could make it on my own.” And she could. She went to college, received a degree in accounting, got married, and raised a daughter. But when her personal circumstances changed and she could no longer afford the costly incontinence supplies, she was faced with some tough decisions—cut back on the use of supplies or default on her bills. She tried to stretch her resources by cutting back on supplies, but developed infections, abscesses, and was frequently on antibiotics.
Nena met with state legislators and advocated for six years to persuade the State to assist with the cost of the incontinence supplies. However, the Missouri Medicaid program refused to cover the cost unless she was in a nursing home. “We were told several times that they would only be covered if I lived in a nursing home.”
Fearing that the only way to receive the supplies she needed was to move to a nursing home and lose her independence, Nena, and several others in the same situation, filed suit and DOJ filed a brief in support of their claim. The federal district court agreed that the State had violated the ADA, and that under Olmstead, the State was required to provide incontinence supplies to adults who needed them in the community.
“Olmstead opened up a world for people like me who were trapped. I’m fifty-one years old and I don’t trap well. I hunt, I fish, and I’ve taught both of my granddaughters. Everything that my parents and my grandparents did with me, I do with them. I consider it very important; it helps build strong family values. That is something that I could not do from a nursing home. ”