June 23, 1999

Individually addressed to:

• Rep. Bill Archer, Chairman, House Ways and Means Committee
• Rep. Charles B. Rangel, Ranking Minority Member, House Ways and Means Committee
• Rep. Thomas J. Bliley, Jr., Chairman, House Commerce Committee
• Rep. John D. Dingell, Ranking Minority Member, House Commerce Committee
• Rep. Michael Bilirakis, Chairman, Subcommittee on Health and Environment
• Rep. Sherrod Brown, Ranking Minority Member, Subcommittee on Health and Environment

RE: EXPRESSION OF STRONG SUPPORT FOR PUBLIC POLICY INITIATIVES THAT EXPAND FOR PEOPLE WITH DISABILITIES THE PROVISION OF LONG-TERM CARE AT HOME AND SUPPORT OF FAMILY CAREGIVERS.

Dear Representative:

Our nation's system for providing long-term care to people with disabilities is facing serious challenges. Today, two out of five Americans will need long-term care at some time in their lives. The majority of this care is provided informally, mostly by family caregivers. In 1990, family and other informal caregivers provided care for nearly 83 percent of persons with chronic disabilities who are under age 65, and 73 percent of people with disabilities over 65. As individuals with neuromuscular disease, we know that family caregivers are true unsung heroes. Every day, countless acts of care and love are given by family caregivers to the thousands of us with any of the 40 diseases covered by the Muscular Dystrophy Association. This tremendous contribution to our well-being and to the nation's overall health care system is often unrecognized, because the service is unpaid and kept within the family. It is nevertheless a massive subsidy to the nation's chronic care system. This so-called "invisible" health care is estimated to total $196 billion a year. If changes are not made, the increasing population in need of long-term care, a shrinking number of family caregivers and a bias toward instutionialized care in federal Medicaid programs will lead to a crisis in the availability of long-term care, a diminution in the quality of this care and to severe stresses on family caregivers.

Availability of Long-term Care

The demand for caregivers is rising dramatically while the number of family members available to do caregiving is declining. The demand for caregiving increases with improvements in medicine which increase the life span of Americans. By the middle of the next century, the average American life expectancy will increase six years to an age of 82 and by 2030 the number of elderly Americans will double. Today nearly half the people over 85 — one of the fastest-growing segments of our population — need help with everyday basic tasks like eating, dressing, going to a doctor. Estimates are that by 2020 the number of people needing long-term care will nearly double. These population increases will place great strains on the availability of long-term care.

While the demand for caregiving increases, the supply of family caregivers is decreasing. The factors causing this shrinkage in the number of caregivers include smaller and older families and the fact that more women, who have traditionally been the unpaid family caregivers, are now working. The average age range for caregivers is from 50 to 64. In 1970, the ratio of caregivers in this average range to the population aged 85 and older was 21 to 1. By 1990 the ratio had fallen to 11 to 1 and by 2030 it is predicted that there will be only six such potential caregivers for each very elderly person.

Costs will rise as demand increases and the number of family caregivers decreases. By 2030, unless there are changes in provision of long-term care, chronic care alone is projected to cost our nation $798 billion (in 1990 dollars) in direct medical and nursing home costs.

Quality of Long-Term Care

The supply and demand problems facing long-term care will have an important impact on the price and quality of care. As more people look outside the home for care, they will learn that private health insurance or Medicare cover long-term care in a very limited way. Most Americans are not well informed about their lack of coverage for long-term care, and when they are informed, are in a difficult position, because the cost of private long-term care insurance is very expensive. Nursing home costs now average around $40,000 a year. At these prices about half of nursing home residents who begin by paying with their own money and health insurance must turn to Medicaid within three to five years . American men can expect to spend $56,895 on long-term care while the average women will spend $124,370 during her lifetime. Two-thirds of elderly nursing home patients rely on Medicaid to help pay for their care. Over 70 percent of single individuals and 50 percent of couples with one partner in a nursing home are impoverished within a year. These high costs leave millions dependent on the government for their everyday needs.

One way to both reduce costs and to improve the quality of long-term care is to support long-term care in a home and community based setting. However, there is a bias in Medicaid toward institutionalized care in nursing homes. Eighty percent of all public long-term care funding goes toward institutionalized care, leaving only 20 percent for all home and community services. It has been shown that care in a home and community based setting is less expensive and often preferred to that given in nursing homes. Care at home keeps people with disabilities with their families and in their communities. Expanding the ways in which long-term care is delivered increases consumer choice and competition, thereby leading to lower prices and improved quality.

Care for the Caregivers

Today, one in four Americans provides care of some kind for a person with a chronic health condition and, given demographic trends, the chances of becoming a caregiver are increasing. The demands on caregivers can be very heavy. Eighty percent of caregivers for elderly, disabled people provide help seven days a week. These caregivers help with housekeeping, meal preparation and other common tasks. In addition, two-thirds of these caregivers assist with feeding, bathing, dressing and using the toilet. Advances in science have often made caregiving more technically difficult. Today, caregivers tend to address everything from dialysis to depression, from preparing intravenous meals and to administering insulin injections. The majority of caregivers hold jobs outside the home and may have to take unpaid leave or work fewer hours to fulfill their responsibilities. In countless ways, caregiving is vital, meaningful work, but it can also be difficult and very stressful. It is important that we begin to fashion public policies that support the tremendous benefits we as a nation receive from family caregivers.

President Clinton's Long-Term Care Initiative

President Clinton's four-pronged initiative to provide families with assistance with long-term care is an important beginning in addressing this issue. President Clinton's first proposal is to provide a long-term care tax credit of $1,000 for people with long-term care needs or for the families that shelter them. President Clinton correctly believes it is far better and less expensive to spend this money to help keep the elderly and the disabled at home, where they prefer to be, than to spend the same amount to pay for them to live away from home.

The second prong of Clinton's Initiative is the creation of a national family caregiver support program. This new national network would support people caring for disabled and older Americans by giving them access to information and community resources. This initiative would enable states to create "one-stop shops" where caregivers could access the resources of the community, find technical guidance, and obtain respite and adult day care services.

The third part of the Initiative is to educate Medicare beneficiaries about long-term care options and what is and is not covered under Medicare. Because Medicare does not cover most kinds of long-term care, it is very important that beneficiaries understand their alternatives. Better preparation by consumers for long-term care will come with awareness of the coverage problems and will improve both choice and quality.

The fourth part is to have the federal government offer to its employees long-term care insurance. In this, the federal government would set a national example. Estimates are that 300,000 employees would participate in the program.

President Clinton's $6.2 billion initiative is a small contribution toward an increasingly expensive social problem, but in its support of family caregivers, its educational elements and its initiation of a federal long-term care insurance program it is an important start.

Passage of the Medicaid Community Attendant Services and Supports Act (MiCASSA) is also an important first step as we begin to address issues of choice, quality and cost in long-term care. This bill is expected to be introduced in Congress this year to replace H.R. 2020 which was not passed. MiCASSA is aimed at Medicaid's bias toward nursing homes by giving beneficiaries more options for long-term care at home or in other community-based settings.

MDA was founded by concerned family members and through its research, clinic, education, summer camp and support group programs — all of which are provided without any fees charged to MDA clients — assists family caregivers in myriad ways. The MDA National Task Force on Public Awareness comprises individuals with neuromuscular diseases who advise the Association on issues of importance to its clients. As individuals, and as representatives of MDA, we know firsthand the life-sustaining importance of family caregivers and urge you to support public policies that expand and improve the quality of long-term care in our nation.

Sincerely,

The Members of the Steering Committee of the
MDA National Task Force on Public Awareness