Breaking Out of the Nursing Home

One of my most memorable patients is a woman I’ll call Victoria, who is almost completely paralyzed. She can use her hands a little, but can’t turn in bed. She needs complete care by a nurse’s aid several times a day, every day. Her body is failing, but her mind is intact, and she knows her rights.

“They won’t get me back in a nursing home.�

I don’t know if I agree with her decision to get care at home, but I think she demonstrates what is possible. If she can manage with her extreme disability, what reason is there to force her to live in a nursing home when she doesn’t want to? What excuse is there for this?

PLANT CITY, Fla. – Charles Todd Lee spent a lifetime going backstage at concerts, following politicians on the campaign trail and capturing iconic shots of everyone from Martin Luther King Jr. to Mick Jagger to Mickey Mantle. Today, he enjoys such freedom only in his dreams.

The 67-year-old photographer has been confined to a nursing home for five years, the victim of a stroke that paralyzed his left side. And he’s angry…

Lee is among the Medicaid recipients across Florida challenging the nightmare of the old and disabled: to be forced from comfort and familiarity into a nursing home.

They say the state is illegally forcing them to live in nursing homes when they should be able to live where they choose. Advocates charge that nursing homes, afraid of losing money, have successfully pressured politicians to make qualifying for community care more difficult. They have filed a federal lawsuit seeking class-action status on behalf of nearly 8,500 institutionalized Floridians…

Americans who qualify for Medicaid and get sick or disabled enough to require substantial care typically have little problem gaining admission to a nursing home. But obtaining Medicaid-supported services at home, such as visits from an aide, is substantially harder and often involves a long waiting list, even though it may cost the government less.

Did you read that last line? ‘Even though it may cost the government less’.

I’m not intending to criticize nursing homes. I’ve worked in several, and they’ve improved a great deal in the last twenty years. For some people a nursing home is the best option, and many use nursing homes for short-term rehabilitation or respite.

But Charles Todd Lee, paralyzed on the left side, able to give an interview, sounds far less disabled than Victoria. What the heck is he doing in a nursing home? Against his will?

When decisions are made about Medicaid spending, a share goes to nursing homes and a share to home care. Neither is cheap, but home care is usually less expensive. Home care is underfunded in Rhode Island, making it difficult to recruit and retain good workers who are the foundation of the whole system.

I think we are doing better than Florida, but maintaining home care as a real option will require support from the state and advocacy from consumers.


3 thoughts on “Breaking Out of the Nursing Home

  1. It’s shocking that people should be forced into nursing homes – especially when the whole drift of modern social policy should be about maintaining people in the community

  2. Nancy,

    Hard to admit it, but this is the first time I agree with you 100%.
    Most nursing homes here in RI , cost about 350$/day. That is 14.58$ hour. That doesn’t include the dollars spent in many cases, for subsidized housing, that goes empty will they are in these homes. I’m sure that number could be cut in half, and still provide the care required. While allowing them to remain in their home, where they so want to be.

  3. What’s interesting too is that the move to home care puts pressure on nursing homes to make a more homelike environment and accomodate patient’s needs and preferences.

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