Editorial Opinions
My Fight Against Nursing Homes
Author: Kathleen Kleinmann
Declaration of Independence,
The Declaration of Independence,
In Congress, July 4, 1776
- We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
- That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed,
- That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.
It may seem a little drastic to quote the declaration of independence as a comparison to the fight for a national attendant care program. But, the truth is, we are in the midst of a revolution...it is a revolution that the independent living movement began... it is a continuation of the deinstitutionalization of people with mental illness and people with mental retardation.
To many of you, it is a personal fight...a personal battle for freedom. Perhaps it is freedom that you are in danger of losing. Perhaps it is freedom that you have lost and desperately want to regain. Perhaps it is freedom that you never had.
For me it is personal, too. But, it is personal of because my innocence and ignorance of the past. Between the years of 1975 and 79 I was employed by the State of New Jersey Medicaid system. I was a professional social worker responsible for the inspection of nursing homes for compliance with state and federal standards of social services, recreation and patient's rights.
Towards the end, I was a supervisor of social workers who evaluated applications for Medicaid placement in nursing homes.
On a daily basis, I saw things that I did not fully understand. I saw people lined up and sitting in the same place day every time I visited the facility even though it was three months since the last visit.
I saw most rooms clean and orderly, but devoid of personal possessions.
I saw cold food served on paper plates that looked like something that I would never eat.
I saw people in wheelchairs that they could not propel themselves.
I was always surprised to see so often great distrust in the eyes of many, many of the people I visited.
I saw restraining devices such as geri-chairs, and sheets tying wheelchairs to hall railings all the time.
I constantly heard stories of theft of even the most insignificant personal item.
The people in nursing homes seemed to live in great fear...fear of leaving the facility and fear of staying there as well.
And strangely, it was required that ALL the patients have the same doctor, all were taking many, many medications, and usually the same medications.
Access to telephones by patients was difficult if not impossible.
Of those seeking placement in nursing homes, I recall the desperate pleas for relief from families as well as desperate pleas for alternatives to placement.
Back during those days, I thought this situation existed out of necessity. I thought the needs of these people warranted grouping them in institutions so that their care could be provided economically. I trusted that all the paid professionals were doing the best job that they could. I thought that there was no alternative that could effectively and efficiently give people the support that they needed.
But the real "truth" became apparent.
Providing only facility based care really saved the state lots of money because only the most desperate asked for help.
Most people who entered facilities were not sick but had a social network that had broken down, temporarily or permanently...out of money, exhausted family, or someone who had suffered abuse or neglect.
About 60% entered facilities because they had suddenly became incontinent...lost control of bowel or bladder functions. There was no one willing to help care or teach the person how to care for themselves.
Despite their apparent lack of serious illness, over 50% of people who enter nursing homes die within six months...again saving the state money.
Of all these facts, the most disturbing to me always was that as an inspector and state agent...I and all of my colleagues in the system had this overwhelming feeling of powerlessness. If we asked for improvements or changes, we were treated as uninformed intruders. Also, we knew in our hearts that unless we witnessed brutality or harm, the system would not back us up. There was a constant battle between the facility and the state over money. If we as inspectors asked for anything for an individual or the general population, it would touch off a knee jerk reaction of "we don't have to unless you give us more money" and "the state absolutely can't afford another cent".
Money was the driving force in the institution...everyone that I saw. It was not service to people. That was a by-product. And with the possible exception of people who had daily visitors who were concerned about their care, all the patients suffered from a general level of neglect and a profound level of oppressive control.
My new found insight and knowledge, and my shame at my former ignorance, has made me a crusader within the IL Movement for personal assistance services. I began that fight with the World Institute on Disability and the National Council on Independent Living. But during the last few years I have moved to the methods of ADAPT for the purpose of this fight. I believe it takes the most powerful weapons when you are fighting against the vested interests of 60 Billion dollar nursing home industry plus the tremendous pressure not to spend government money on a "non- working" segment of the population.
I accept it as my personal responsibility not to allow people to continue to die in nursing homes and other segregated forms of incarceration called "care".
ADAPT stands for Americans Disabled for Attendant Programs Today. Up until 1990, they fought for lifts on public transit buses. I have no doubt that their efforts during the 1980's directly lead to provisions of the Americans with Disabilities Act related to transportation. Many believe that without ADAPT, the ADA would never have passed in the at all. Who knows?
ADAPT believes that they must:- Educate the public on the vested interests of people with power who support the status quo of little or no personal assistance services
- Publicly confront those who have the power to change the system with the knowledge of the real harm that they are doing to real people
They do this through national public, non-violent demonstrations and protests of hundreds of people with severe disabilities against individuals and systems that are critical to the perpetuation of the current system. I have participated in the demonstrations in San Francisco, Washington DC, Las Vegas, and Nashville. I've been arrested 7 times for trespass or related charges. I think that those arrests contribute greatly to my professional resume.
In May of 1994, ADAPT demonstrated at Rep. Newt Gingrich's office. It was before he was officially leader in the House of the dominant political party. At that time he said to us, bring me a piece of drafted proposed legislation for a national attendant care program and I will introduce it myself. ADAPT has these statements on video tape.
ADAPT drafted such legislation and called it CASA, Community Attendant Services Act. They sent it to the congressman and waited for his response. ADAPT demonstrated against Rep Gingrich again. They wanted to show him the tape but he avoided them. However, small bands of ADAPT people hit him at sites all over the county during the summer. He could run but not hide. Just groups of 20 or so, chanting and carrying signs in places where the associated press could not help but see. A few arrests happened, too.
In August 1995, a meeting was finally set for September 13. Each state that has an active ADAPT group was invited to send one person. Representatives from Georgia, Colorado, Pennsylvania, Kansas, Kentucky, Illinois, Michigan, MA, Utah, Tennessee, Texas, and Wisconsin were present. At this meeting, Speaker of the House Gingrich agreed to sponsor a national attendant services bill called CASA and to include ADAPT in efforts to redesign Medicaid and long term care. In addition the Speaker reaffirmed his belief in community based services as the preferred means of providing long term care. He agreed that institution should be the last optional that that people with disabilities, old and young, should have real choices in the community. Speaker Gingrich's office will be releasing a press statement next week stating his endorsement of Community First policy and the principles included in CASA. Speaker Gingrich also agreed to invite Senate Majority Leader Bob Dole and National Governor's Association chairman Governor Tommy Thompson, of Wisconsin to meet with ADAPT to discuss attendant services and long term care reform.
During this same period, ADAPT was pressuring Secretary of Health Shalala and the Health Care Finance Agency. In May 1995, the Secretary met with ADAPT and consequently issued a statement of support for a national attendant care program and the principles of CASA.In June, 1997, Speaker Gingrich at long last followed through on his promised to introduce MiCASA as HR 2020.
The same bill has been introduced to every Congress since 1997 and is now called the Community Choice Act. The disability movement nationwide is fighting hard for passage. Learn more at ADAPT.
