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Friends -- and Enemies

"The system in our county is screwed up, and that's not by chance. . .

The nurses have their own agenda; and you have all these "certified home health care agencies" who don't want the money going to the people. And you have the nursing home lobby.

"The people who determine eligibility and set hours are county employees. They're obtrusive, they're rude, they fight with people; they threaten people who complain with cutting off their hours. People are scared. This is life-and-death for them; if they get minimal hours it really defines the terms of their lives. If that's cut off, they're in the nursing home.

It's outrageous."

Syracuse, NY Advocate Steve Taylor of the Center on Human Policy



There are groups who do not want people with disabilities to live in the "most integrated setting." They will actively fight your efforts to make your state give people real choices about where to live. These are your real enemies.

You also have to watch out for your friends, though -- groups who in theory do really want us to have choices about where to live, but who are:

  • timid at confronting public officials

  • concerned about their public image and don't want to ruffle feathers

  • against direct action, demonstrations, arrests

  • disorganized and unable to make decisions

Friends like these often derail good intentions more effectively than enemies.



Watch out when you hear . . .


  • "We don't want to burn our bridges with X (legislator or public official)."

  • "We don't want to appear unreasonable."

  • "They want to do a study first. We can't argue with that!" (Yes you can! We have all the studies that are needed -- Freedom Clearinghouse will give you studies to use with officials. Contact us if you need a study -- we'll find it for you.)

You can imagine all the kinds of excuses and worries that friends like these have!




REAL enemies

The enemy standing in the way of our freedom isn't necessarily the bureaucrat. The true enemy is the "commonsense" arguments that are used by bureaucrats and others:

  • That we're "better off" or

  • Less expensive
    when we're managed by being kept in institutions and nursing homes.

Freedom Clearinghouse is about responding to stupid arguments with intelligent solutions. Get to know these arguments -- and the responses we can make -- before they're used to shut you up.




The nursing home lobby
Called the "X [your state's name] Health Care Association," these are associations of nursing home operators and owners. They want money to continue to flow to nursing homes or other congregate facilities they might own (new ones are being called "assisted living facilities"). They will fight hard against your work.

Find out how much money your state nursing home lobby is giving to your state legislators to keep the Medicaid dollars flowing to institutions.

How the Oregon Health Care Association fought in-home services.



Nurses' associations
State nursing associations want to ensure that registered nurses are in control of who provides "nursing" services. They are medical-model oriented, and in most states the nursing association has gotten a Nurse Practice Act into law. Nurse Practice Acts list a large number of tasks that can only be performed by a registered nurse (read: money for nurses). In order to get personal assistance services that you direct yourself, activists in most states have had to get their state's Nurse Practice Act changed. And the state nursing association will often resist.

More on fighting Nurse Practice Acts.



Parent groups
who want to keep state institutions open -- and keep their daughters and sons in them. The group called "Voice of the Retarded" is one well-known group, but every state has such associations.

The battle in California



Unionized workers
who see their jobs in institutions disappearing if people can decide to live where they choose.

The Service Employees' International Union fights to keep institutions open.




Nursing home opposition in Oregon

When Oregon gets serious about inhome options, the nursing home industry fought back.

In 1995, Oregon was the only state that spent more on home and community based services than institutionalization in nursing homes, reports the University of Minnesota's Robert Kane and his cohorts.

At the time, Oregon's approach was considered the most progressive in the nation. Oregon had overcome opposition from the nursing home industry to put its philosophy into practice -- and into state law.

Getting the home and community based program set up in Oregon was a matter of overcoming two beliefs, says Kane: the belief that "home care should be provided only through home health agencies" and " a belief that certain nursing tasks" -- giving medicine, for example -- "can only be performed under the close supervision of a nurse."

Oregon benefited from a "strong and well-organized senior lobby". which fought to get a state policy on aging enacted into law in 1981 that called for the state to serve seniors in the "least restrictive setting" -- mirroring language that is now found in the 1990 Americans with Disabilities Act.

The 1981 Oregon law also, not incidentally, "called for savings in nursing home care to be used for home and community alternatives."

The effort to pass the law met with stiff opposition from the Oregon Health Care Association, the state nursing home lobby.

"The nursing home industry maintained a low profile and did not publicly oppose the creation of the 1981 law that created a new division to serve seniors and, not incidentally, also directed that the state would provide services in the "least restrictive setting" and use the money saved from what would have been spent on nursing home institutionalization for "home and community alternatives," says the report.

"Opposing the legislation would have placed the nursing home industry in an awkward position, given the high level of interest among seniors, and the industry did not want to be seen as 'anti' senior programs," says Kane's report.

The new Senior and Disabled Services Division created under the 1981 law fairly soon proposed a major reduction in nursing home usage along with major increases in using less expensive in-home services, says Kane.

The SDSD met with the nursing home industry before they submitted their budget to the state for approval, and gave the industry "the option of accepting a 15% reduction in their reimbursement rate [or accepting the SDSD's plan of diverting clients to home and community-based options. "The nursing home industry chose the latter, most likely thinking that the SDSD would not be able to divert many clients," says Kane's report.

But SDSD managed to lower nursing home Medicaid cases by 10 percent. New clients were choosing home-based options, and so were private pay clients -- "and that made nursing home profits start to fall," says Kane.

With that, the nursing home industry went into action.

"In 1985," reports Kane, "the nursing home industry filed a formal complaint with the Health Care Financing Administration." They charged Oregon with violating the "terms of the federal home and community base care waiver by forcing people out of nursing homes." Oregon was the first state to ever apply for one of these waivers; says Kane; Medicaid had just instituted them in 1981.

The lobby charged that Oregon wasn't giving people who were new to the long term care system a "choice of providers" -- meaning the choice of going into a nursing home.

The nursing home lobby pressured state legislators. As a result, the SDSD program came under fire. Investigations followed. The investigations concluded there had been no violations of any federal programs and that "clients were mostly satisfied with the manner in which SDSD had handled their cases. "

The brouhaha ended with advocates "picketing the annual convention of the Oregon Health Care Association in Portland. This event was televised," reported Kane, with "nursing home industry spokespersons quoted as saying all they really wanted was what was best for seniors, and seniors responding that seniors, not care providers, should have the say in what is best for seniors."

From: Oregon's LTC System: A Case Studyby Richard Ladd, Robert Kane, Rosalie Kane and Wendy Nielsen of the University of Minnesota's National LTC Mentoring Program (University of Minnesota School of Public Health, Box 197 Mayo 420 Delaware Street SE, Minneapolis, MN 55455 ) published in April, 1996.


"The Health Care Association sued us," SDSD's Susan Dietsche told ADAPT's Jennifer Burnett. "They challenged us in any way they could, sent memos to HCFA saying we violated the waiver. Their lawyers did everything they could to prevent" Oregon from implementing its in-home services.

"In the end, though," said Dietsche, "popular demand and prudent economics won."

Between 1990 and 1997, 13 nursing homes went out of business in Oregon.



Who gives money to your state legislators to keep institutions open?

How to find out:

Go to www.followthemoney.org/database/

Select your state.

Select "health" industry. This will likely take you to another database with those same industries; again select "health."

At the next prompt, select "hospitals/nursing homes." When that comes up one of the choices is "nursing homes" (another is "health care institutions" -- look at that, too).

Clicking on "nursing homes" brings you to the motherlode. Here you'll find a list of exactly what organizations gave to which state legislators. You'll get dollar amounts, plus names and addresses.

You can have the database sort online -- you can click on an individual contributor (Kentucky Assocation of Nursing Homes, for example), and the database will list for you every legislator the group has donated to, and the amount, and the date.

"Health services" is another good choice to search. There you'll find out where "home care services" are putting their lobbying dollars.



Other sources of information on nursing homes:

Use the HCFA Nursing Home Database to find nursing homes in your state that have bad records -- look at all of the reports for your state -- then get hold of your state's inspection report for the ones that have bad records. It's a good idea to download all the information so you will have it to use to get copies of the inspection reports.

Find phone numbers for your state's "State Survey Agency" -- the state agency that conducts site inspections for nursing homes. Your own state may have a site which posts nursing home inspection reports.



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