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DAY FORTY-FIVE: What is community life like in states with alternatives to nursing homes?

Moving out of the Nursing Home in Colorado.

By Tim Wheat

EDITOR'S NOTE: This article was originally published in the MCIL Journal Dec. 2004.

Winnie CookTo see Winnie in her own apartment her in Boulder Colorado, you don’t wonder how she lives on her own; you wonder how she got into a nursing home in the first place.

“I went into the nursing home because of a stroke. No one told me how long I would be in Terrace Heights,” said Winnie who lived in the nursing home just over one year, “no one ever talked about getting out or about rehab.”

Winnie moved out of Terrace Heights Care Center this past September and into her own one-bedroom apartment. She began attending the Independent Living program at The Boulder Center for People with Disabilities (CPWD) this past July with the goal of getting out of the nursing home: she and her cat. Two months later, Winnie was in her own place.

“My cat goes where he wants to go and does what he wants to,” said Winnie about her cat Tigger; “his freedom is what I like most about him.”

Although nursing homes get federal funds to provide rehabilitation for residents like Winnie, the institutions tend to focus on custodial care. The idea of rehabilitation or getting out is not even presented to the residents. Too often, the nursing home becomes the last address for residents. If Winnie lived in Tennessee, she would still be in a nursing home.

In Colorado, however, there are home and community based services that offer a real option to expensive institutional care. Although Tennessee has seen an expansion to HCBS services, to realistically be an alternative to nursing homes they must become more comprehensive. Often Tennessee HCBS providers do not have services after business hours or on weekends. Some people can use Tennessee HCBS to avoid a nursing home stay, but the typical resident does not have resources to fill in at night or the weekend when providers don’t offer service.

Text Graphic: People always talked about leaving, but they never did.The nursing home industry works hard to combat the natural market control of people with disabilities of the services they require. The nursing home resident’s desires can become institutionalized and the residents may adopt the facilities decisions as their own. The day-to-day routine is reinforced by the staff, who prize compliance and praise conformity. Even in Colorado, where there are more alternatives to life in a nursing home, people with disabilities are disempowered by the overwhelming institutional control.

“They tell you that you can go when you want,” explains Winnie, “but there is always an ‘if’. If is the main word - If they say it is okay.” 

A person can become lost in an institution. An individual’s desire to move back into the community can become replaced by complacency and the satisfaction with accomplishing the nursing home’s objectives. Personal ambitions are often replaced by the goals of the closely confined institutional environment. In Tennessee, where Home and Community Based Services are limited, there is just no realistic alternative to the institution and the dominance over residents is near absolute.

Being a good patient becomes paramount, troublesome and difficult residents are consistently reminded that they do not control their own lives. The constant daily dominance of the institution dwarfs the personal control. An individual’s need for the institution becomes a self-fulfilling prophecy: You live in a nursing home because you need institutional care. 

The fact is many nursing home residents in Tennessee do not need institutional care.

The Center for Medicare and Medicaid Services (CMS) found nationally that about 20% of nursing home residents "…expresses/indicates preference to return to the community." In Tennessee CMS reports 6,556 responded they preferred the community; 20% of the Tennessee nursing home population.

“You don’t hear about people getting out when you are in the nursing home,” said Winnie, “you never hear about that. People always talked about leaving, but they never did.” 

Institutions use the submissiveness of the environment they create to avoid change. If the resident does not demand the proper equipment or use unrealistic bureaucratic procedures, the institution simply does not respond. Moreover, when the institution does act out of federally imposed guidelines, the institution makes the resident feel as if the action were a gift of the facility.

WinnieNursing homes are the most expensive and least desirable form or long-term care. During her year in the nursing home, no one assisted Winnie to get a proper mobility aid, and when she decided to leave, LeRoy Baker, the Terrace Heights administrator, ordered her out of the aging wheelchair.

Winnie was of course eligible for a proper mobility aid, prescribed by her physician. A local supplier provided Winnie with a loner wheelchair while they order a properly fitting wheelchair. The old damaged wheelchair Winnie had used went back to Terrace Heights, presumably to keep some other resident from receiving the proper mobility devise.

The nursing home’s prime concern did not seem to be “the patient” but the uninterrupted flow of federal funding.

The most important tool that assisted Winnie in getting out of Terrace Heights was a US Department of Housing and Urban Development (HUD) “Project Action Housing Voucher.” The voucher, often called a Section 8 voucher, subsidizes the tenant’s income and can be used at any apartment that will take the voucher.

The federal government, working with state and local housing providers, pays the lion share of the rent, while the tenet pays about one-third of their income. This arrangement not only helps to integrate our community, but it gives the tenants ownership in their housing and moves away from the “project” style housing that can become a blight.

“Affordable, accessible housing is the biggest barrier facing people with disabilities,” said David Bolin the Executive Director of CPWD, “without housing options, our community faces being placed in institutions and assisted living facilities.”

The Center for People with Disabilities is able to target vouchers to individuals that are leaving institutional settings. Memphis has historically avoided any targeting of vouchers because of the administrative difficulties. Currently in Memphis, someone leaving a nursing home must compete with other people on the section 8 voucher waiting list for possible housing, and they would have to find an accessible home and arrange services from a nursing home bed. 

“Even with the help of the Memphis Center for Independent Living,” said Deborah Cunningham, “I don’t know of anyone that has been able to pull all those things together. It has been more realistic for people to move out of the state, pay for transportation to Colorado, and basically transition over hundreds of miles than to move a single block in Memphis Tennessee.”

WinnieIncreasingly, housing is being seen as the critical link to community integration; however, people with disabilities are still working for a parity between institutional long-term care services and those that will expand long-term community living. Nationally, institutions still get over two-thirds of the federal funding for long-term care and institutional care is required by federal statute, while cost-saving home and community services are optional. When state budgets face cuts, it is not the mandated institutional services that face the axe, instead it is the more desirable and cost-effective home and community based services that routinely must be defended.

Personal attendant services and skilled nursing delivered to individual’s homes allow people with disabilities to live independently rather than being forced into expensive institutions. The focus of comprehensive custodial control in the nursing home can be replaced by consumer-directed care in the community.

For individuals moving out of a nursing home like Winnie, personal attendant services help accomplish the activities of daily living. Rather than depending on the institution for all basic components of life, individuals manage their own care in their own home. The concept of “consumer control” returns independence to people with disabilities. Although an individual may not be able to accomplish some activity of daily living, consumer control requires people with disabilities to be in charge of these actions.

Being in charge of your life and having real responsibility is risky, but it is also rewarding.

“There is nothing to do, nothing to look forward to. Watching TV was about it,” explains Winnie about life at Terrace Heights. “Seeing the apartment made me believe, seeing it and knowing that it is yours. I love my apartment, it is a really nice place.”

- Tim Wheat


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