OLDER WOMEN'S [EAGUE

NATIONAL OFFICE

STATEMENT OF THE OLDER WOMEN'S LEAGUE

for a hearing on

ADULT DAY CARE: A VITAL COMPONENT OF LONG TERM CARE

before the

U.S. SENATE SPECIAL COMMITTEE ON AGING

April 18, 1988

Chairman Melcher, members of the Committee. Good Morning. I am Lou Glasse, President of the Older Women's League, a national membership organization devoted exclusively to the concerns of midlife and older women. The Older Women's League was formed following the White House Mini-Conference on Older Women in 1980, and now has over 20,000 members and 100 chapters. Through education, research and advocacy we work for changes in public policy to eliminate the inequities older women face.

I would like to introduce to you Laurie Shields, co-founder of the Older Women's League and coauthor of our recently published book Women Take Care: The Consequences of Family Caregiving in Today's Society. In researching the book, Laurie, her co-author Tish Summers, and the OWL Task Force on Caregiving, interviewed over 400 caregivers.

National surveys have shown that caregivers are in desperate need of support services. Services like adult day care, respite care and in-home services are critical. Furthermore, our own research has shown that these services can substantially lift the emotional and economic burdens of caregiving.

Family caregivers are the unpaid workers in this nation's system of health care for frail, dependent persons. Without the attendance, assistance and nursing that caregivers devote to the elderly, our hospitals and skilled nursing facilities would be flooded.

As health care costs have risen over the last twenty years and as government has engaged in intensive cost containment policies, more and more responsibility for care of the sick and the aged has been shifted to families. Studies show that, for every person in a nursing home, there are four living in the community who receive unpaid care from families and friends. And because people are living longer, increasingly aging adults are caring for very aged parents.

This shift toward greater family responsibility has occured at a time when out of economic necessity more women are entering the paid labor force. These two events are causing personal and family disruption as well as economic hardship for millions of families and, particularly, millions of women.

Women traditionally have been the caregivers to both young and old. Roughly three out of four (72%) caregivers of the elderly are women, totaling 1.6 million. The most common relationship of caregiver to elderly care recipient is that of daughter or wife. Studies indicate that the average woman today can expect to spend as many years caring for a dependent parent or spouse as she does in caring for a dependent child.

We expect them to adjust their work schedules, their social and marital relationships their leisure time, indeed their lives, to provided succor to aged relatives. And more caregivers are doing just that--lovingly, willingly, regardless of the cost to themselves.

For many, this time of taking care of a loved one is a treasured time of sharing, a time to express love through tenderness, patience and understanding. But it can also be the backbreaking work of lifting, bending, turning, and of cleaning soiled bed linens. For many, this strenghtens and deepens the commitment of the caregiver and the cared for to each other, and it provides lasting memories. For some it is a time of pain, struggle and exhaustion that may stretch to a breaking point their capacity to care.

Sometimes too much is asked of caregivers. Frequently they carry the burden alone, housebound and isolated, often depressed and financially depleted, they may abuse the person dependent on them or may become ill themselves. A University of Bridgeport study found that 20% of caregivers it surveyed had been under a doctor's care and 22% of them suffered from frequent anxiety or depression. Most of us have known someone who has risked her own health in order to care for another. Among the 1.6 million women who are caregivers, almost half (44%) report they are in fair or poor condition.

The economic effects of caregiving can be devastating for women. Job interruptions for family responsibilities are a major factor in poverty among midlife and older women. Between the ages of 21 and 64, full-time women workers average 11.5 years out of the paid labor force, while men average 1.3 years. These differences are most extreme among midlife workers. For this group, full time women workers between the ages of 45 and 64 have spent almost two decades out of the paid labor force caring for family members, while men in this age category have spent less than one year away from work. This loss of job tenure has both a direct effect on present income, as well as on future retirement benefits. Job interruptions have also meant that vesting in a pension plan is often unlikely, even when retirement benefits are available.

The corporate community is increasingly turning its attention to the balancing act of working and caregiving. Employers have good reason to be concerned. A study conducted by the Family Survival Project looking at the joint demands of caregiving and employment found that 22% of those surveyed had quit their jobs because of a relative's caregiving needs. Of those who remained employed, 55% had to reduce the number of hours that they worked. More than half of those still employed reported decreased productivity. The study found that employed caregivers spent an average of 34 hours each week working and another 35 hours each week caring for their disabled relatives. These working caregivers spent as much time taking care of an ill or disabled adult as they spent at work. Those who left their work in order to care for a relative estimated lost income to be $20,400 a year. In addition, they spent an average of 18 hours a day giving care.

Other studies have confirmed these findings. Research by the Philadelphia Geriatric Center in 1987 and the National Center for Health Services Research and Health Care Technology in 1986 found that 12 percent of their samples of caregiving daughters had quit their jobs. A sampling of caregivers done by Elaine Brody in 1984 found that 40% of women who left their jobs for caregiving responsibilities had incomes under $15,000.

Many companies have begun to conduct their own studies. In December 1985 the Travelers Companies found that twenty percent of all its home office employees, aged 30 and older, provided some form of care for an older person. This survey found that these employees provided an average of 10.2 hours per week of care for an older person, with 8 percent of them spending 35 hours or more per week at the task. Forty percent managed the elderly person's finances, and 30 percent provided direct financial support. Other company surveys are finding the same results, creating concern about personal productivity. Many companies have instituted policies to help employed caregivers, such as corporate sponsored adult day care, caregiving fairs, flexible work hours and expanded leave policies.

Too often, caregivers are reluctant to seek services, even when they are available and affordable. A recent study found that three out of four of the disabled elderly, who reside at home, do not receive any formal service. Only 5% receive all their care from paid services. Many caregivers do not know that services exist. Some feel that they should be able to solve their problems on their own, without turning to outside help. Some feel guilty for wanting to get away from caregiving. Some are uncomfortable with a stranger coming into their home. Some feel that no one can care for their relatives as well as they can.

But waiting until a crisis erupts before looking for services means that the choices will probably be more limited and the stress on both patient and caregiver will be greater. Unfortunately, not all of the needed services available. Though some are available, they are too costly.

Among the services noted in Women Take Care are adult day care, respite care and home health care. Paying for these services however, presents a serious problem for families. Medicare, the largest government payer of health care for older Americans is focused exclusively on "acute care", which in practice means hospital care.

Ironically, the health care containment policy adopted by the government with such fanfare occurred at the same time that the Administration's practice of Medicare reimbursement for home health aid service was quietly downgraded. The number of days covered was reduced and reimbursement became more restrictive. The patient is now required to be sick enough to be homebound and at the same time well enough to need only intermittent care. In other words, if the person is so sick that he/she requires skilled nursing services, services may be available in the home a few hours for a few weeks. Some health planners call this a NO-CARE ZONE.

Medicaid, on the other hand, allocates 40% of its nationwide budget to nursing home care, but a couple must impoverish themselves to qualify the disabled spouse for Medicaid coverage.

As you know, Medicaid may pay some home health care but eligibility criteria vary from state to state. In a few states Medicaid will pay for adult day care for a person is eligible.

Private insurance plans offer little assistance to the disabled spouse and caregiver once he leaves the hospital. There is a growing interest among some insurance carriers in offering long term care insurance but we have a long way to go before adult day care, respite care and adequate in-home services are available and affordable to families in need.

In conlusion, we need national health policies that support families as they care for their incapacitated members. We need policies that are concerned with the well-being of the caregiver as well as the person cared for. We need a federal system of services for long term care that will strengthen families who give care, not weaken them; that will nurture the caregiver, not exploit her.

More adult day care programs need to be established that will provide relief from constant caring and at the same time enable the caregiver to remain in the paid labor force. We need to encourage the development of more affordable respite care programs. The Older Women's League urges the

expansion of Medicare and Medicaid to cover respite, adult day care and home health care.

The CHAIRMAN. Thank you, Ms. Glasse.

The Older Women's League is a fairly new organization, is it not?

Ms. GLASSE. We are 8 years old, sir. We have 20,000 members nationwide and we are growing very rapidly.

The CHAIRMAN. Then, you are in most States now?

Ms. GLASSE. We are in 37 States across the country. We have about 115 chapters. We are a grass roots organization of women who come together as a result of their concerns about the problems they are facing such as inadequate income and care giving.

The CHAIRMAN. Well, the book by Tish Summers and Laurie Shields, "Women Take Care," has provided us here on this committee with a beginning of understanding how much of a drag this is

on women.

Laurie, in your documentation for this book—I think Ms. Glasse said that 75 percent of the care givers, that is, someone helping somebody at home, are women. Is that borne out by your—

Ms. SHIELDS. It certainly is, Senator, which does not say that we found men are not care givers. Men are caregivers, but they do it in a different way. They are able to pay for services that the dependent spouse cannot.

In addition, from a demographics point of view, women outlive men by 8 years now, and the gap is growing. As in the case of the Glakas', men are very often married to younger women who outlive them and will wind up becoming care givers.

I have been a care giver twice in my life, once for my husbandand I was younger than he was, and for Tish Sommers, my colleague and co-founder of the League.

However, the differences are more than just gender. What it is is an acceptance of a societal kind of dictum that says women are scheduled to do this because theirs is the nurturing role in the family.

As a wrinkled radical, let me be the first to tell you that I would like to have women have the same option men have, and that is to be able to say it is not my cup of tea; I can't do it—and not feel guilty about it.

In Senator Bradley's State of New Jersey, we have some wonderful programs going, and some of the most exciting ones coming out in other States-I just came from Georgia-are going for State respite care bills. Adult day care centers are another badly needed form of help.

Compassion is in very short supply in this country today, and we shouldn't load it all on the backs of unpaid women care givers. We need a new partnership. We need private sector, we need government, we need care givers, we need the whole works, even though we aren't going to get the whole enchilada.

However, with the help of people like yourself and the members of this committee who have long had a reputation that we are aware of of bringing to the fore problems of older people that nobody else wants to touch, believe me, this is a hot issue.

The CHAIRMAN. Thank you.

Senator Bradley.

STATEMENT BY SENATOR BILL BRADLEY

Senator BRADLEY. Mr. Chairman, I would only thank the witnesses for their testimony. I think they have been very helpful. Ms. GLASSE. Thank you.

The CHAIRMAN. Thank you both very much.

Next, we are going to hear from Don Peterson who comes from my State. He is the Executive Vice President of St. John's Lutheran Home in Billings, Montana, a home that I have had the privilege of visiting several times.

Also, at the same time, we will call Ms. Kay Larmer, Chairperson of the National Institute on Adult Daycare, a membership unit of the National Council on Aging.

Please proceed, Don.

STATEMENT OF DON PETERSON, EXECUTIVE VICE PRESIDENT, ST. JOHN'S LUTHERAN HOME, BILLINGS, MT

Mr. PETERSON. Thank you, Senator.

I am Don Peterson, Executive Vice President of St. John's Lutheran Home in Billings, Montana.

You have copies of my written testimony, and I will only excerpt some of that to emphasize certain points.

St. John's is a multi-service provider which includes an adult day care center.

I want to emphasize I am here today representing the American Association of Homes for the Aging, a national non-profit association which represents more than 3,200 non-profit providers of longterm care, health services, housing, and community services for the elderly.

On behalf of AAHA, I would like to thank the committee for providing this opportunity to testify about this country's need for adult day care. I would also like to thank you, Senator, for the support you have given to the adult day care issue in the United States Senate.

The introduction of S. 1839 is an important step in making this health care option available to additional numbers of older Ameri

cans.

The National Institute on Adult Daycare has noted that adult day care programs have risen from 12 in the early 1970's to nearly 1,400 today. This is certainly progress, but you and I know that we have barely scratched the surface. There is such a great need for this kind of program.

I think our program at Billings is an example of the kinds of individuals who need this service. We have a total of 16 participants who spend from 1 to 5 days per week at our center. They range in age from 65 to 92.

Some are there because of dementia. Some have chronic health problems. Some are lonely and just come for the company and socialization.

Adult day care programs are designed to provide socialization for the participants and, at the same time, address their health needs. In addition to medical monitoring and medication assistance, we provide psychosocial, recreational, and other programs for participants who have degenerative or chronic conditions. We also ad