The Case for MiCASSA

By Tim Wheat

An explanation of why America needs to reform Medicaid with S. 971 and H.R. 2032 the Medicaid Community Attendant Services and Supports Act of 2003.

The Case for MiCASSA Part 1: The Medicaid Institutional Bias Destroys the lives of Americans.

Most Americans see nursing homes and other long-term care institutions as a regrettable final step in life; an unfortunate but necessary choice based on objective medical assessments, a place to go to die. This concept is reinforced by the hospital-like environment and referring to the people that live in “the home” as patients. 

Nursing homes, however, are not hospitals. Some long-term care facilities are in hospitals, but for the most part, a nursing home resident that needs medical care will have to take an ambulance to a real hospital to get attention. Nursing homes exemplify the “medical model” where medical decisions and goals dominate the administration and management. Nursing homes though do not exist to provide medical care; they use a medical paradigm to provide a home.

Although nursing homes assert they give “24 hour care,” actually the Centers for Medicaid and Medicare Services finds that people in nursing homes get no more than 1.7 hours of direct care. Melvin Douglas who escaped the nursing home in Tennessee to live in Denver Colorado says there is no “nursing” in the nursing home. He said he did not get any wound care for his pressure sores until he got out of the nursing home. 

“In the best of circumstances,” writes Alex D. Littlefield, Jr., a lawyer in Medicaid planning, “a nursing home is NOT a home.” 

Similar to the state penitentiary, inmates may treat the institution like home or may make it their home; but a nursing home is an institution and not home. State Mental Hospitals and Intermediate Care Facilities for the Mentally Retarded (ICF/MR) are also institutions and sometimes called “the home” but they are also institutions.

The fact is, for institutionalized Americans; individual and personal choices are taken away. The “medical” verdict that places people in a nursing home also controls the most basic non-medical decisions of personal autonomy, like when to get out of bed, what to eat, and how to spend free time. Institutions remove power.

Without basic personal autonomy, institutions and the wishes of the facility overshadow the needs of the individuals. People are devalued, disempowered, isolated and ignored. Choices of money, property, friends and time fade into other people’s control. 

Institutions rationalize this loss of control and personal autonomy because of the medical model that has institutionalized the individual. When someone enters a hospital, the medical model rationalizes the patient’s loss of personal autonomy because of what is diagnosed to return the person to health and to the community. In a nursing home, however, returning the person to health and the community do not justify the medical model.

The 1995 Medicare Current Beneficiary Survey found that “twenty-eight percent of … [people in nursing homes] had at least one inpatient hospital stay in 1995, compared with approximately 18 percent of the community-only residents [Health and Health Care of the Medicare Population].

People with disabilities living in the community and not in medical model institutions actually receive better medical treatment. It is a false impression that nursing home residents are more “sick,” or require a greater level of care, or are unable to receive long-term care services in the community. Feldstein found in 1988 and confirmed by DHHS in 1997 that “for every aged nursing home resident, there are about twice as many aged community residents who require a similar level of long-term care.” 

The Medicaid Bias.
Although most people in nursing homes are elderly, it is not age that qualifies an individual for an institution. The common thread is disability. If anyone wants to live in a nursing home or desires institutional care, Medicaid in all U.S. states currently requires the institutional option. If someone does not want to live in “the home;” however, the choices are fewer. In Tennessee, 95% of all Medicaid funding for the long-term care of individuals was funneled into institutions. Nationally, only about 27% of public funding provides Americans with alternatives to nursing homes.

While federal Medicaid policy requires US states to provide intuitional long-term care, home and community alternatives to institutions are “optional” Medicaid services. Most U.S. states have used “waiver programs” to save money and provide better service, giving Americans some choices. With the state financial crisis, however, the bias in the system has become clear. The preferred Medicaid services are vulnerable to budget cuts, while the nursing homes continue to receive funding, in most cases, with annual increases.

Deborah Cunningham, the Executive Director of The Memphis Center for Independent Living has helped many individuals escape nursing homes to live in the community. Because the nursing home industry dominates federal Medicaid funding in Tennessee, community services for someone leaving a nursing home are few. Deborah has created an “Underground Railroad,” moving people to states with community options.

“To date I have helped nine or ten people leave Tennessee on the Underground Railroad,” said Deborah, “some to avoid placement and some right out the back door of the nursing home with their discharge marked ‘against doctor’s orders.’”

“I would be dead if I would have stayed in Tennessee,” said LaTonya Reeves, who Deborah helped to escape nursing home placement. LaTonya now lives and works in Denver Colorado.

-tw

Coming Soon! The Case for MiCASSA Part 2: Institutions perpetuate dependency, poverty and death.