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5/31/98, 1:59 pm
WHY THE CURRENT TENNESSEE LONG-TERM CARE SYSTEM PRECLUDES CHOICE AND SOCIAL MOBILITY FOR PEOPLE WITH DISABILITIES
The latest census data shows that 54 million Americans, or about one in five, has a disability covered by the Americans with Disabilities Act (ADA). Most are integrated into our community, however people with disabilities continue to be plagued by poverty, disenfranchised and segregated into nursing homes. People are often placed in a nursing home or isolated from community life because they do not receive adequate care to allow them to live in their home.
Three interrelated forces in our state that combine to keep federal Medicaid money flowing into the nursing home industry are: an institutional bias; the nursing home lobby itself; and the ingrained "medical model" of service delivery.
Every state that receives Medicaid funding is required to offer nursing home care. Home- and community-based programs that would provide the same care are optional. This obvious bias in the 30 year-old Medicaid program results in Medicaid money funding institutions rather than individuals.
In Tennessee, over 94% of long-term care funding is doled out to institutions. Administrators and their governing boards are the financial care-takers of the nursing home "beds." They determine what services are necessary, and how services are to be delivered to their charges.
The huge amount of Medicaid funding coming into this state, as in most states, has created a giant monolith opposing any change to the current system. Obviously, the nursing home industry, represented by the Tennessee Health Care Association lobby, has a huge vested interest in continuing to dominate the public funding for long-term care.
U.S. News and World Report lists the American Health Care Association Political Action Committee (AHCA-PAC), the national nursing home lobby, as one of the 50 most exorbitant spenders for political favors. Although 63% of nursing home funds nationwide come from Medicaid, the Federal Election Commission reports AHCA as one of the 50 PACs with the largest increase in funds from 1994 to 1996.
Society's inclination to view people with disabilities as sick, further establishes a medical model of service delivery and constrains individuals' control over their own care. The term "medical model" is used in a derogatory way by the disability community. This may be confusing since Medicaid, also known as Medical Assistance, is the main funding source. People with disabilities are not denying health related needs, but are questioning the locus of control of the long term care system. Today health professionals, doctors, nurses, physical therapists, occupational therapists, nursing home and home health providers are the focus of the long term care system. The desires of the individuals using these services are disregarded.
The independent living and social model, on the other hand, focuses on choice, consumer-control and the needs of the individual. Services are based on what will make people able to participate in community activities, to go to school or work, or to participate in religious and other community activities. Contrast this with the current medically oriented system that focuses on a medical diagnosis to determine what people can't do.
Although nursing home residents are commonly called "patients," administrators confine them to beds, and the nursing homes themselves are called "hospitals," nursing homes are not "medical" facilities. Nursing homes are not providing a cure. Former residents are living productively in the community not because of some "treatment," but simply because they have gotten out of the nursing home.
To the maximum extent possible recipients of the service should be in control. There are many tasks that people with disabilities need assistance with that are health maintenance activities. Unfortunately, many health professionals describe these tasks as medical, but they are everyday living tasks that are often routine in the lives of people with disabilities.
The institutional experience is not a medical necessity. It is a financial connivance. Tennessee isolates and segregates poor citizens into institutions, cycling the federal Medicaid dollars through the billion dollar for-profit nursing home industry.
WHY LONG-TERM CARE IN TENNESSEE NEEDS TO OFFER CHOICE
Attendant care is nothing complex. It is help doing the necessary tasks of daily life that are limited because of a disability. When someone is in a nursing home it is the job of the nursing home staff. It is a combination of the duties that one needs to accomplish to live independently. Consider these five advantages of attendant services.
First, is that you don't have to be locked in an nursing home to receive attendant services. This means the individual can live alone in their own home, or live with family or a loved one without relying on them for assistance with daily care and activities. There is no advantage to gathering people in one place, facility or institution to provide services.
Secondly, attendant services can give the individual a greater level of participation in their own care. More control not only streamlines the requirements for services by eliminating unneeded or unwanted aid, but can lead to empowerment and dignity.
Rather than being viewed as a commodity, people in charge of their own attendant services can become empowered to direct their care. Without this control over their care, people with disabilities are objectified and reduced to the role of "charity case." They are given no voice in appealing for appropriate care. "What difference does it make to put your shoes on the right feet," the health care worker or nursing home employee may say to you, "your feet don't work anyway."
Attendant services, thirdly, can create more social mobility for people with disabilities. Many people with disabilities that have avoided nursing home placement, are still not supported to the extent that they can work and fully participate in community life. Many rely on spouses, family, and loved ones to provide the needed services. This is not only a tremendous drain of our community resources, but it makes people with disabilities dependent on others and therefore constantly "at risk."
The fourth advantage is that in almost every instance, attendant services are less expensive than nursing home placement. Even for citizens who require care 24 hours a day, attendant services are more cost effective than institutional care. Most people in nursing homes in Shelby County receive less than 4 hours of attention a day.
The cost savings alone would be a compelling argument for choice, since it is mostly our taxes that provide the services currently. It is the human element, however, that makes attendant services an imperative. This country cannot continue to allow a select subsidized industry to profit at the expense of the taxpayer and the dignity of elderly and disabled citizens.
Finally, a competitive system allowing reasonable choice is the best way to improve nursing home care. Nursing homes being the only game in town has resulted in a stagnation in care and a decline in standards. Federal inspectors, ombudsmen, individualized plans and yearly expanding funds have not remedied the negligence inherent in the nursing home industry. Time reported in October of 1997 that a study of death certificates in California nursing homes found that over 7% died "Éin part to utter neglect -- lack of food or water, untreated bedsores, or other greatly preventable ailments." (p. 35) No one wants to live in a nursing home.
It is not necessary to argue the advantages of a market system to Americans. Creative and preferred methods of service will only grow out of a flexible system that can reward quality. This is very evident in Tennessee where the Federal Court has had to close large institutions like the Arlington Developmental Center, near Memphis, because of poor and negligent care.
HOW TO SOLVE THIS PROBLEM IN TENNESSEE
The first simple solution is to waive the institutional middleman and provide the funding to the individual, or agencies that serve them. This is called a Medicaid Waiver and surprisingly, this system is already in place. The requirements to get a waiver are so restrictive, however, that only about half of the 550 possible slots statewide are actually used. Other restrictions make it impossible for someone using the waiver to be employed.
Tennessee needs our Governor to eliminate the restrictions on the waiver, which was designed to move people out of nursing homes in the first place. The waiver should also be made available statewide rather than in just the four largest counties.
MiCASA, HR 2020, is a proposed national legislation that will begin a system of attendant services. Introduced last summer by Newt Gingrich and co-sponsored by Richard Gephardt, the bipartisan legislation is gaining support. Tennessee need not wait for the federal government to take the lead. Alternatives and options like MiCASA need to be adopted now to begin to confront the changing demographic of this country.
Call MCIL 726-6404 Today to be a part of making Memphis accessible.
Tim Wheat
Memphis Center for Independent Living
The Memphis Center for Independent Living
1633 Madison Avenue,
Memphis, TN 38104
(901) 726-6404 v/tty (901) 726-6521 fax
mcil@mcil.org
MCIL is a United Way of the Mid-South member Agency
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