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How can people who need help
live outside an institution?

photos by Tom Olin

Easy - when America puts community first.

by Lucy Gwin

  from reporting by John Woodward and input from Stephanie Thomas

Lucy Gwin is editor of Mouth magazine.



Balancing a checkbook is no medical procedure.


This comes as a surprise to most folks, so brace yourself: With only a handful of exceptions nationwide, nursing homes do NOT have physicians on staff. (Some have physicians on contract. Read one of those contracts sometime. It's a very different proposition.)

Many nursing homes are cited by regulatory agencies each year because they don't have registered nurses on staff.

Only a very few people who live in nursing homes need medical assistance. What most need is called "personal assistance" --- also called "attendant services."


Helping someone out of bed and into a wheelchair in the morning is not a medical procedure.

  • Balancing a checkbook may be tough, but it isn't a "medical procedure."

  • Wiping somebody's butt is not a "medical procedure."

    Nearly all attendant services can be performed by any trusted person. Over-medicalizing long-term care is costly to taxpayers (see below). Further, it requires that people who need assistance, whether they're young or old, be labeled as sick. We are not, for the most part, sick. We get by just fine out here in the real world with a little help.


    Birth of a great American cash cow

    Forty years ago, the nursing home industry barely existed. A relative few church and county "homes for the aged" provided shelter and minimal care for people who needed some assistance in order to survive but had no money to hire it or families to provide it. Mothers, sisters, aunts and grandmothers did the majority of America's caregiving.

    Then, in 1965, came the birth of the "care industry." Congress passed amendments to the Social Security Act which created Title XIX, the federal legislation authorizing Medicare and Medicaid. Medicaid, which now funds nearly two-thirds of America's nursing home beds, was originally designed to help older, impoverished Americans pay for prescription drugs (sound familiar?) and nursing care.No one at the time thought that the nursing care part would be popular.

    Today the nursing home industry is a growth industry. And its bills are eating state budgets alive.

    Medicaid is a joint federal-state program. Under Medicaid policy which was devised in 1965 and is still in effect, all states must offer institutional long-term care. Home- and community-based services are optional. Moreover, the amount which Medicaid may spend on home-and community-based services - the kind most folks need - are optional. States do not have to offer them.

    When states do offer such services, they often fence them in with wild and crazy eligibility requirements like, "must be between the ages of 22 and 51, require services which cost no more than 85 percent of nursing home costs, and have been a participant in a state vocational rehabilitation program between the years 1975 and 1990." Yikes!

    Moreover, the amount which Medicaid may spend on attendant services is capped. No such cap exists for institutional living arrangments. That's what's called "institutional bias."

    "I don't want to be a burden."

    None of us wants to return to the days when mothers did all the caregiving. None of us want to live, or have family members live, in institutions. People who make a living off knowing what's best for others, allied with people who profit from the current incarceration method of "care," have designed a system about us, without us.

    People like me who have survived that system abhor it and work to change it. Today, thanks to the Supreme Court's ruling in Olmstead v. L.C. and E.W., we have the law on our side. Giving people what they want rather than what professionals perceive to be their "need" is both less expensive and more satisfying to all concerned, including the taxpayer. Unlike institutions, home- and community-based services can be flexible, individualized, and built on the human scale.

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