What is community life like in states with alternatives to nursing homes?

Part One: Moving out of the Nursing Home in Colorado.

By Tim Wheat

To 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.

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.”

Part Two: Institutions turn residents into money, control equals funds.