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A Passage Back Home

The focus of the Olmstead Decision – a 1999 U.S. Supreme Court Decision, “Olmstead versus L.C.” – was to give people with disabilities the opportunity to receive services in the community. This decision will likely shape the future of someone you know. This story is about an Arkansan whose life has been significantly changed because of that decision; her name is Sylvia Warren.

Two years ago, Warren, 74, left a nursing home in southern Arkansas and moved into her own apartment. The circumstances surrounding her move to the nursing home, and from it, provide a roadmap for other Arkansans in similar situations. She shares her story in hopes that others may be helped by her experience.

In 2000 Mr. And Mrs. Warren were living together in their apartment. That summer Mr. Warren was hospitalized for surgery, became critically ill, and was placed on life support. Shortly after he was hospitalized, Mrs. Warren fractured her ankle and had surgery to repair the damage. Following surgery, she went home alone for a short period to time. While there, she further injured her ankle and returned to the hospital for more surgery. Her leg was placed in a cast that extended from her thigh to her toes.

Determined to remain independent, she went home again only to discover that she now needed help with the activities of daily living that she had just a few weeks earlier taken for granted - walking, bathing, dressing, feeding, and even toileting. She was now totally dependent on others for all her personal care. Unable to find services to provide support 24 hours a day, she and her son agreed, with great reluctance and sadness, that she should enter the nursing home. Sensing her life would be forever changed; she left behind her things and the life she had known. Warren says it is a day she will never forget.

Sylvia lived in the nursing home for 13 months and cannot recall any complaints about the personal care she received. What she vividly recalls are the feelings and emotions she felt while living there. One of her strongest memories was the sense that she was living in an environment where people were waiting to die. But it was her freedom and privacy she missed most. Prior to moving there, she had never lived with anyone other than family and found it very difficult to adjust to living with a roommate who was a total stranger. She will never forget the frustration she felt watching other residents rummage through the few personal belonging she had in her room or the disappointment she felt when they disappeared. She became more frustrated and depressed every day that she remained in the nursing home.

Although Sylvia’s cast had long been removed, she was personally convinced she could not walk. One staff member persisted in working with Warren until she began walking short distances, working up to walking the halls with her walker. She felt stronger, more independent, and decided that she was now ready to live on her own again.

Nursing home staff were supportive of her decision but were unable to find the necessary resources to assist her. Her son had moved her furniture and personal items to a storage unit following her move to the nursing home and they were ruined by the December 2000 ice storm damage. There was no insurance to replace them. Medicaid was paying for Sylvia’s care in the nursing home, which meant that all of her income except for a personal allowance of $30 per month was paid to the facility. That personal allowance paid for items such as clothing, shoes, and personal items not provided by the facility. She simply had not been able to save any money.

Fortunately, Warren was referred to a program called Passages that assists adults who want to move from the nursing home back into a community. In less than two months she was living in her own apartment. Passages assisted her with rent, utility deposits, and furnishings for her apartment. When she first moved to the apartment she received help from a volunteer from the Senior Companion Program. Now her son takes her shopping, to medical appointments and assists her with paying bills. Warren says she enjoys her life now and has regained all she lost and more.

Passages is a program managed by the Division of Aging and Adult Services (DAAS) and funded by a federal grant to offer individuals like Warren the opportunity to live in the community. Her life and the lives of more than 80 other individuals have been shaped and changed as a direct result of the Olmstead Decision.

Ms. Baldwin is a Program Manager at DAAS.