THE MEDICAID EXPLOSION

The phenomenal rise in over-all Medicaid expenditures in Virginia--$485 million in 1985 to $2.1 billion in 1995--reflects, in part, the aging of the commonwealth's population, the unprecedented survival to late life of individuals with heretofore life-shortening impairments, and, bridging the two, a fundamental flaw in our orientation to long-term care. A greater number of ordinary Virginians living to advanced age means (1) more contributions by our elders to Virginia's well-being and (2) more needs by elders with late-onset disabilities or impairments--e.g., stroke and dementing illnesses--for community-based and nursing-home services paid by Medicaid. Similarly, more Virginians surviving beyond mid-life despite having significant lifelong developmental disabilities--e.g., mental retardation and cerebral palsy--means both contributions and needs. Linking these two populations, those with late-onset and those with lifelong disabilities, is a group whose lack of recognition points out a flaw in our concept of long-term care, namely, family caregivers.

Family caregivers provide help with the big needs and the little needs, the personal care and the grocery shopping, the meal preparation and the telephoning that give meaning to the words 'long-term care.' Yet family caregivers, who account for an estimated 65-80 percent of all of the hours of long-term care given each year in Virginia, are not recognized by Medicaid or other health-care schemes as appropriate 'providers.' Medicaid reimbursement policies, in brief, legitimate two broad categories of providers of chronic care for those with impairments: institutional care--e.g., hospitals, nursing homes, and care facilities--and licensed professionals--e.g., physicians and nurses. The concept and the practice of long-term care overlook the most fundamental player in chronic care: the caregiving family. For a number of reasons, including stemming the spiraling costs of Medicaid, we should rectify this omission.

THE GIFT OF TIME AND ITS CONSEQUENCES

Virginia is benefiting from the gift of time, the extra years of life expectancy that have characterized successive generations of Americans in the twentieth century. This century opened with a median life expectancy of 58 years (meaning that one-half of us could expect to live less), rose to a median life expectancy of 79 by 1990, and will probably close with a median life expectancy of about 82 years (that is, half of us living beyond this age). This gift of time translates in Virginia into a 45 percent increase in the number of citizens aged 60 and above just since 1970 and our attaining a million senior citizens before the decade closes.

Most older Virginians will be healthy, contributing members of their communities. Some will be employed; some will serve local agencies, schools, and communities of faith as volunteers; many will drive local and state economies through their investments, purchases, travel, and taxes. Their health is good. Even above age 75, according to the National Center for Health Statistics' National Health Interview Survey (NHIS), the percentage in the community with reported impairments or chronic conditions is surprisingly low: visual impairments, 13 percent; orthopedic impairments, 22 percent; hearing impairments, 44 percent; hypertension, 30 percent; and diabetes, 10 percent.

The gift of time does have a price. Advanced age, 85-plus years, or what some gerontologists call 'old-old' (an awkward usage that is evidence of how we are still accommodating to our newly added years), does correlate with greater prevalence of impairments. Alzheimer's and other dementing illnesses affect one-third to one-half of these elders. Over half suffer visual impairments, and whereas over 80 percent of the men and over 70 percent of the women at ages 75 to 79 report having no difficulty with activities of daily living, the numbers sink to 65 percent and 51 percent, respectively, at ages 85 and above, according to the NHIS. With increasing age, elders report their need for someone else's assistance. Families step in.

The gift of time has also benefited adults whose lifelong developmental disabilities historically meant abbreviated lives. (Developmental disabilities are defined functionally as physical or mental impairments, or a combination, which are present at birth or by age 22 and which produce incapacities in self-sufficiency that are likely to last a lifetime.) A Virginian with Down Syndrome in the 1960s might expect to live, on average, 35-40 years. Because of improved medical interventions and longer life-expectancies of caregiving family members, the picture has changed. Today about 9,000 Virginians over age 60 have Down Syndrome, mental retardation, epilepsy, blindness, autism, or other lifelong, developmental disabilities. The overwhelming majority--90 percent or more--live in our communities, most often because of the care of their families. Our research at the Virginia Center on Aging over the past several years has shown that many, perhaps most, Virginians with developmental disabilities age 'invisibly' in our neighborhoods, without the services of established disabilities, aging, or health agencies, and that elders with lifelong disabilities now account for about one of every 100 older adults in a given area, a fact to which many human service agencies are currently ill-prepared to respond.

RECOGNIZING FAMILY CAREGIVERS IN LONG-TERM CARE

Most of us want to grow old in our own homes, in our own communities. Americans prefer to 'age- in-place.' Even when our homes and our bodies deteriorate, we value community living. Assistance from family members--family caregiving-- makes this wish possible for a longer period of time. Ironically, while most of us will live and die in our communities, not in a nursing home, and while most of us with impairments will accomplish our activities of daily living with the help of family members, the nursing home and the outside, licensed professional epitomize 'long-term care.' It is not that nursing homes are bad. They are not. Nor is it that Virginia's licensed professionals are inadequate. They are caring and capable. Rather, the issue is that we have not played our trump card in long-term care: family caregivers. Virginia needs to recognize these vital providers and to reinforce their abilities to continue caring, through initiatives like relevant training, tax credits, and other avenues of support.

STRENGTHENING FAMILY CAREGIVERS THROUGH PRACTICAL TRAINING

Reinforcing family caregiving through broadly available training in caregiving-related topics has the potential to build the knowledge and skills of caregivers and, in the process of delivering the training, to help establish support groups and a bank of expertise related to caregiver and care recipient well-being. As well, information shared in group training among caregivers is likely to be practical in resolving intra-family conflicts; overcoming bureaucratic obstacles; identifying valuable 'human resources' in the community, such as valid and reliable pharmacists or direct service providers; or relieving all-too-common feelings of frustration, despair, and isolation. Training experiences thus simultaneously affect the caregiving of others as well as self-care.

Research suggests repeatedly that caregivers want additional information to continue their care more effectively. Without such information they often report feeling overwhelmed. A September 1996 survey conducted by Yankelovich Partners, Inc. for the Greater Richmond Chapter of the Alzheimer's Association found that half of the 500 caregivers surveyed strongly agreed that their caregiving duties cause stress within their immediate families and also that they do not have enough time for themselves. Our own (Coogle and Ansello) 1992 survey of 11,000 employees of Virginia Commonwealth University disclosed that elder caregivers, who accounted for about 30 percent of the respondents, identified the need for information as a top priority.

Family caregivers providing chronic or long-term care, irrespective of the age of the dependent care recipient, need information or training on proper nutrition, health promotion, available community resources, application procedures, and networking with peers. In a multi-year study supported by the Governor's Office of Justice Assistance in Maryland, a team of researchers of which I was a part discovered that over three-quarters of the family caregivers of 1,400 frail elders we interviewed reported having responsibility for administering and monitoring the care recipients' medication regimens and, most importantly, having no training in how to do it properly. Proper drug regimen oversight is complicated, to say the least. But with dependent elders taking multiple medications because of multiple chronic conditions and with the Canadian Journal of Pharmacy reporting virtually a certainty of drug-drug, drug-food, or drug-disease adverse interaction when eight or more medications are involved, training in how to as- sist in medication management may truly be life-saving. Furthermore, studies repeatedly report that adverse drug reactions among the elderly are a major cause of hospitalizations and cost many billions of dollars each year in treatment.

The delivery place for training interventions can be the caregiver's home, the workplace, or some community setting. State-supported training would, in effect, be an investment in preventive maintenance, warding off untoward events among care recipients and caregivers, enabling them to continue care meaningfully in community--not institutional--settings. Virginia already has a training mechanism in place for such an effort. The eight local Area Health Education Centers (AHECs) of the Virginia Statewide AHEC Program cover each region of the commonwealth. Beginning in 1979 in the Tidewater area, each AHEC has received or is receiving a five-year start-up grant from the federal government to train professionals in primary care. As this funding ends, each AHEC is receiving state appropriations to continue valuable distance education, practice support, networking, and resource identification. Incorporating family caregivers into AHEC's target populations would be a cost-effective use of available training infrastructure and a jump-start in building the expertise of family caregivers as providers.

PACE offers another possible vehicle for disseminating caregiving-related training. PACE, an acronym for Program of All-inclusive Care for the Elderly, is an innovative model program being tested in Virginia and elsewhere that addresses a wide variety of needs that an elder may have in remaining in the community, including medical, social, and even residential upkeep. By using Medicaid, Medicare, and some private pay dollars, PACE becomes a fairly comprehensive project that can take advantage of Medicaid's chronic care orientation, Medicare's acute care expertise, and private pay-funded innovations to help keep frail elders in their communities. Combining the best features of HMOs and long-term care insurance, PACE is both capitated (setting limits for expenditures per person) and individualized (activating, as needed, only certain features of an array of services). In effect, PACE is already operating as a self-care agent for elders; broadening its scope to include training of family caregivers who are related to frail PACE participants would be a logical extension of the service menu.

Finally, with a modest appropriation of state revenue, existing community-based governmental agencies could be agents of training, supplying both content and trainers. Local offices of the Department of Health; the Department of Social Services; and the Department of Mental Health, Mental Retardation, and Substance Abuse Services, for instance, as well as local institutions of higher education, are already physically and psychologically situated in the lives of many Virginia families. They offer the potential of meaningful training in a variety of subject areas that relate to self-care and caregiving of another.

RECOGNIZING THE VALUE OF FAMILY CAREGIVING THROUGH TAX CREDITS

Tax credits may also serve to reinforce the long-term care role of family caregivers. A tax 'credit' in a given amount is a direct benefit to the taxpayer in that amount. A tax 'deduction,' on the other hand, is a benefit whose net savings to the taxpayer will be mitigated by the taxpayer's overall tax return, including his or her income bracket. So, a $500 tax deduction might produce a true benefit of only $140 for the caregiver whose adjusted gross income is subject to a 28 percent tax levy. According to the National Conference of State Legislatures (NCSL), some 18 states allow an income tax credit for dependent care; however, all are based on federal deductions taken for dependent care expenses, e.g., household services and personal aid for a homebound person. The states vary in the percentage or fixed dollar amount allowed pertinent to the federal credit, and so the maximum tax credit per qualifying dependent ranges from $144 to $720, according to NCSL.

In Virginia, some caregivers and their advocates have begun seeking a $500 tax credit for caregivers without reference to the federal deduction. Two entities helped to start this initiative: (1) the Statewide Coalition for the Support of Family Caregivers, begun in late 1991 under the inspiration of Commissioner Thelma Bland of the Virginia Department for the Aging (VDA) and currently having a membership of 20, mostly professionals in aging and human services, and (2) the Partners III Project, an Administration on Aging-funded multi-year project on aging and developmental disabilities, directed by the Virginia Center on Aging, that has just finished testing its integrated model for intersystem cooperation in Maryland and Virginia.

Assumptions behind the tax credit

The initiative for a $500 tax credit for family caregivers, popularly known as the Caregivers Investment Bill, incorporates several assumptions. First, the authors and all of the supporters of this bill in Virginia know that a $500 tax credit will not be an incentive to take up the tasks of family caregiving. Motivations for caregiving lie elsewhere. However, advocates believe that a tax credit is a fitting recognition by the commonwealth of the vital role that families play in the long-term care process. This recognition may be an incentive to some caregivers to continue their care. Second, a tax credit is a form of investment by the state in one of the principal means of sustaining long-term care. It is not a giveaway, anymore than investing taxpayers' dollars in the form of Medicaid payments to nursing homes is a giveaway. Third, reinforcing family caregiving is sound economics. For some time, researchers have been reporting that for every person in a nursing home, there are two, three, or four living in the community with similar levels of impairment. Simply put, the longer a family continues caring for a member with functional limitations, the longer the care recipient remains out of more costly alternatives. Inasmuch as the state, through Medicaid, is the main supporter of nursing home care throughout the United States, outnumbering 'private pay' care substantially, the state is saving many times its tax credit in avoided Medicaid nursing home expenses.

The first attempt

Two initially identical bills incorporating all of these assumptions were introduced during the 1996 session of the General Assembly. H.B. 1519, with Delegate Franklin P. Hall as its chief patron, and H.B. 1269, with Delegate Vance Wilkins as its chief patron, received broad bi-partisan support. Each specified that care recipients must be relatives with significant impairments requiring assistance with two or more activities of daily living; each set low- to middle-income brackets for the caregiving taxpayer's eligibility for the tax credit, and each required that the care recipient not be living in a nursing home already or receiving Medicaid-reimbursed community long-term care services. By early February 1996 the two bills had acquired some differences through amendments and were combined into H.B. 1519. The House Finance Committee considered the bill and voted narrowly (12-10) to carry the bill over to the 1997 session. The Caregivers Investment Bill will likely be reintroduced with modifications to help its passage.

Our analysis of the bill suggests that its greatest impact will be on low-income ($19,000 or less adjusted gross income) taxpayers who are family caregivers and that the tax credit has the potential to pay for itself and then some. Extrapolating from the recent Beyer Commission data on Virginians with disabilities, we estimate the number of eligible taxpaying caregivers to be between 39,000 and 52,000. Many will not apply for the tax credit for a number of reasons. The tax loss from credits taken, projected to be between $15 million and $20 million, would be matched or exceeded by savings in Medicaid expenditures if only 10 percent of those receiving the tax credit were able to defer their family members' institutional care for six months.

Other avenues of support

The suggestions above do not exhaust the ways of recognizing and reinforcing family caregivers. Two other possible avenues, for instance, are service credit banking and systematic information and referral (I & R) for caregivers. Service credit banking is an initiative long supported by the Robert Wood Johnson Foundation. In the past decade the foundation has helped to launch dozens of service credit banks in a number of states; like a bank, participants invest their 'earnings,' credits obtained by providing services to dependent members of the community. Like money, services are denominated, with intensive and personal services like help with personal care--toileting and bathing, for example--being worth more than help with grocery shopping or transportation to the doctor's office. Participants store credits against their own future needs for assistance. The foundation's role is to help set up the bank as the broker among participants with services and needs; once set up, participants keep the service credit banking process going.

Information and referral describe a common need of family caregivers. Our 1992 survey of VCU employees who were balancing work and elder care showed that these individuals were seeking information to help the caregiving process. They wanted, in order, information on (1) available community resources, (2) stress management, (3) long-term care facilities, (4) specific illnesses, (5) interacting with professionals, and (6) public and private insurance. Developing a county-specific I & R 'gateway' for these kinds of information would be vital assistance. With a single number to call for family caregiving-related information, caregivers could continue their work more effectively. Again, any of a number of existing community agencies could be appropriated general funds in the expectation of preventive maintenance of family caregivers as providers of long-term care.

SUMMARY

Family caregiving is the mainstay of chronic or long-term care to dependent persons in Virginia. Indeed, the proportion of all chronic care provided by family members greatly exceeds that provided by either licensed professionals in the community or by such long-term care institutions as nursing homes or assisted-care facilities. It is time to recognize and strengthen this critical element of the long-term care system. It is time to invest our dollars and energies in this renewable resource. If we fail to do so, we can expect the costs of tax-supported chronic-care programs like Medicaid to continue to grow exponentially.

Edward F. Ansello is director of the Virginia Center on Aging at the Medical College of Virginia, Virginia Commonwealth University (VCU); a professor in VCU's Department of Gerontology; and a Fellow of the Gerontological Society of America. He co-founded the Maryland Center on Aging at the University of Maryland, serving as the center's associate director and acting director, and has been coordinator of the Nursing Home Administrators 100-Hour Program for the State of Maryland and director of the Institute for Gerontological Practice at the University of Maryland. He was also the founding chair of the Maryland Consortium for Gerontology in Higher Education, the nation's first such statewide, incorporated affiliation. He has written numerous books, monographs, special issues, book chapters, and articles and has made over 500 national and international presentations on such topics as elder caregiving; pre-retirement education; disabilities and aging; geropharmacy; coalition building; and the humanities, media, and aging. In 1990 he was named Distinguished Academic Gerontologist by the Southern Gerontological Society. He is past president of both the Association for Gerontology in Higher Education and the Southern Gerontological Society.

DEMOGRAPHICS

A study of Virginia's demographics reveals that between 1980 and 1990, the total population increased by 16 percent. Those aged 60 and older increased by 25 percent, and those aged 75 and older increased by 45 percent. This growth rate was unprecedented. The projected growth rate by 2020 will surpass the increase in the previous decade.

What is the life expectancy of older Virginians? Those males who reach age 60 can expect to live another 20 years; those females who reach 60 can expect to live another 22 years. So we have more females than males in the older population.

As far as geographic distribution is concerned, in 1990, 63 percent of older Virginians lived in urban areas, and 37 percent lived in rural areas. Those areas with the largest number of persons aged 60 and older are Fairfax County, the City of Richmond, Henrico County, and the cities of Norfolk and Virginia Beach. One in every four older Virginians lives in these areas.

We have a multi-racial aging population whose historical-cultural backgrounds differ. In 1980, 4.6 percent of the older population in Virginia reported that they had not been living here five years earlier, so there has been some immigration from other states or countries.

PRIMARY CHARACTERISTICS

Regarding their marital status, in 1980, 79.6 percent of older men were married, and 45.6 percent of older women were widows, which indicates that there are more older women than men.

The majority of older Virginians live in single-family detached homes, and nearly 75 percent own the home in which they live. Therefore, a minority lives in alternate accommodations, such as with their adult children, in residential communities, congregate housing, board and care homes, or nursing homes. In fact, according to the last census, only 3.76 percent lived in nursing homes.

Income generally determines not only life-style but, in large part, health status and the ability to buy appropriate services if one becomes disabled. The Census Bureau estimated that in 1989, 30 percent of older households in Virginia had incomes below $10,000; another 34 percent had household incomes between $10,000 and $20,000. Approximately 14 percent had incomes of $50,000 or more. In 1989, 14.4 percent of older Virginians had incomes below the poverty level.

In 1986, 67 percent of men and 42 percent of women between the ages of 55 and 64 worked in the labor force. Of those in the 65 and over age group, 16 percent of men and 7 percent of women were working.

Along with populations of other states, Virginians are living longer, which will, in turn, put more pressure on health and personal-care services and families. An examination of the mortality figures reveals that the median age of death in 1992 was 74.1 years, an increase from 70.9 in 1981. The death rate varies for different age-sex-race groups. The median age at death for males was 70.8 and for females 78.1. The median age for whites was 75.4; for blacks, 69.5; and for other non-whites, 67.6. In 1992 the five leading causes of death in descending order for persons aged 65 and older were diseases of the heart, malignant neoplasms, cerebrovascular diseases, chronic obstructive pulmonary diseases, pneumonia, and influenza.

Regarding health status, in a 1978-79 survey of non-institutionalized Virginians aged 60 and over, 47 percent of the respondents reported themselves to be in excellent or good physical condition. Another 29 percent reported that their physical health only slightly affected their ability to perform daily activities. The mental health status of 79 percent of the respondents was rated as excellent or good. Therefore, the majority of older Virginians enjoy good health.

According to the 1990 census, 83 percent of non-institutionalized males 65 and older and 76 percent of non-institutionalized females aged 65 and older reported no limitations in mobility and self-care. Consistent with other aging populations, the number of older persons reporting no limitations decreased with age: 79 percent of persons aged 65 and older reported no limitations, and 67 percent of those 75 and older reported no limitations.

Heather McKenzie, a barrister-at-law and former adjunct professor at the University of Maryland's Center on Aging and Mary Washington College, has been the chief executive officer of the British National Charity, National Council for Caregivers and Their Elderly Dependents, and has written 13 books, several guides, a television play, and several hundred articles on caregiving, aging, and related issues. Her most recent publications are Empowering Older People and Taking Care of Yourself While Caring for a Family Member.

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