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WHAT SYSTEM IS IN PLACE TO CARE FOR OLDER ADULTS?People are living longer and needing increasingly complex levels of care as they age. Originally, caring for the aged was primarily a concern of family, neighbors and friends. Today this responsibility is borne by a complex system involving government, private businesses and community based organizations in addition to the original caregivers. As with any large system, the best interests of the individual are at risk of being overlooked. This chapter of the report considers the formal and informal systems that are in place to help older adults access the services and supports they need as they age. Initially the discussion is about the formal Long Term Care System - the mechanism for financing and providing community based and institutional care across all areas. The discussion focuses on how individuals access care and the changes and trends at the national and state levels that impact access. This is followed by a discussion about the informal long term care system - family and friends that provide the vast majority of care for older adults. Lastly, this chapter covers information about the local investment in care and services for older adults. THE LONG TERM CARE SYSTEMThe formal system that has developed over the years to address the needs of older adults is commonly known as Long Term Care (LTC) and refers to a range of services including medical, social, personal care and supportive services that are used by individuals who do not have the ability to care for themselves or maintain their households due to some type of chronic condition, such as a physical disability or health problem. It is not possible to discuss here all aspects of the long term care system. Rather, the point is to provide an understanding of the key parts of the system and how it impacts older adults and the community as a whole
for older adults, covers bypass surgery (acute) but not care for diseases such as Alzheimer's (chronic). Dependence is supported over independence in that significantly more resources are allocated for institutional care than home care (NAELA, 2000). In the last 10-15 years, several changes on the national level have occurred that are impacting the long term care system. These changes are having a significant impact on the ability of older adults to maintain independence and age in their own homes.
1States apply to the federal government for Home and Community Based Care (HCBC) waivers which give states the flexibility to spend Medicaid funds for community based services, not just institutional care. As our society continues to age, the need for long term care services will continue to rise as the problems associated with aging become more prevalent. Medicaid expenditures for elderly LTC are projected to more than double between 1993 and 2018 due to both the aging of the population and the increase in cost of care (Wiener and Stevenson, 1998).2 Nationally, it is estimated that 60% of all persons will require long-term care sometime in their lives (NAELA, 2000). Some 23% of all people aged 65+ are functionally disabled or currently need LTC (Tennstedt, 1999). It is estimated that in the year 2000 more than 13,000 Travis County residents ages 65 and older have difficulty with some ADL's (Texas Health and Human Services Commission, 1999, Selected Information). Despite the high level of need, the vast majority of individuals are not adequately prepared to access LTC when they might need it and are confused about the financing of long term care. Most believe that Medicare covers LTC
In Texas, the majority of resources for LTC go to residential services such as those provided in nursing homes. As is shown in Figure 22, of the individuals age 60 and older receiving LTC through the State, 299,000 receive community based services at a cost of $551 million while 59,000 receive residential services at a cost of $1.2 billion (THHSC, Dec. 1998). That means that 16.5% of those receiving services are using 68.5% of the resources. Figure 22. Of the approximately $1.8 billion allocated to LTC for individuals age 60 and older, 61% comes from the federal government and the remainder from State general revenue (THHSC, December 1998). Although Texas expends a substantial amount on community based services, the demand for these services is greater than the supply. The federal government has approved Texas to serve more clients through the HCBC waivers but the State has not allocated the resources necessary to serve additional clients (Weiner, et. al., 1998). Beginning in the 1990's, Texas increased its effort to improve the current delivery and administration of long term care services. Current state efforts include:
For older adults, the most significant action the state could take is to increase the funds for services provided through HCBC waivers. This would enable more individuals to receive services that support independent living. Although the federal and state governments play a significant role in making services available to older adults through financing and service systems, they cannot match the contribution of the individuals discussed in the next section. Table 15.
THE ROLE OF CAREGIVERSCaregivers are the backbone of the long-term care system. Yet, it is only recently that the term "caregivers" has become integral to the discussions about older adults and long-term care. Caregivers assist older adults with all types of needs, including transportation, house cleaning, cooking, personal care, and health care, for example. There are two types of caregivers: formal and informal. Formal caregivers include individuals who are employed by an agency or take on a formal volunteer commitment through an agency. Informal caregivers are family members or other laypersons (friends or neighbors) who provide assistance without pay. The focus will be on informal caregivers, as the contribution they make is not considered in the valuation of the formal LTC system. Traditionally, as individuals aged and were no longer able to care for themselves, family members, friends and neighbors stepped in to help. Chances were that adult children lived nearby and that the daughter or daughter-in-law began to provide help to the older family member in need. Additionally, neighbors knew each other and people generally had stronger ties to their communities. Overall, a solid network of individuals who could provide help to an aging adult existed within a community. Often, elderly parents moved in with their adult children and their families. This was the expectation supported by our cultural and societal norms and our living situations. A number of transformations in our way of life have changed the nature of providing care. Family and community ties have weakened. Families are spread across the country or the world, unable to readily provide help. In more families than not, both parents work. There are more single parent families juggling work and child rearing. People are working more hours. Despite these changes, family members are still the people most likely to care for older adults, but with greater consequences. CHARACTERISTICS OF INFORMAL CAREGIVERSIn 1997, there were an estimated 24 to 27.6 million caregivers in the U.S. (Arno, Levine, & Memmott, 1999). There are roughly over 50,000 informal caregivers in Travis County. Caregivers are spouses, adult children, other relatives, friends, and neighbors. If an individual is married, the spouse is the one most likely providing care followed by adult children, usually daughters. Individuals from racial and ethnic minority groups report a higher incidence of caregiving than the general population, with Asian-Americans reporting the highest (31.7%), followed by Blacks (29.4%), and Hispanics (26.8%) (Tennstedt, 1999).3 Twenty-five percent of caregivers are between 65 and 75 years of age and another 10% are over 75. Figure 23. Source: American Society on Aging, 2000 Twenty percent of caregivers reside with the care recipient, while another 55% live within 20 minutes of the care recipient (Tennstedt, 1999). Twenty (20%) to forty (40%) percent of caregivers are in the "sandwich generation", caring for both children under 18 and disabled older adult(s) (ASA, 2000). PATTERNS OF CAREGIVING Possibly, the most important pattern to recognize is that, in general, caregiving is reactive, not proactive. Caregivers typically do not anticipate and plan for the need to provide care, and as a result, are caught off guard when the need arises. Additionally, they underestimate the time commitment required. Those expecting to spend six months providing care spent one year, and those expecting to spend one to two years spent four or more years providing care (National Alliance for Caregiving, 1999; Tennstedt, 1999). One person, the primary caregiver, assumes the majority of caregiving. Support may be provided by a secondary caregiver but this tends to be sporadic and less consistent, or offered only when the primary caregiver is unavailable (Tennstedt, 1999). Overall, the majority of care is provided by informal caregivers with only a minority using any formal care. Research indicates that care provided by families is stable and that the overwhelming majority of caregivers do not voluntarily exit their caregiving roles. Institutional or community based care may be used to replace informal care in the absence or loss of the primary caregiver, but only temporarily. Most families will resume responsibility for the care when possible (Tennstedt, 1999). Figure 24 shows the number of hours caregivers spend per week providing care. The majority spend less than 8 hours per week, but almost one-quarter spend more than 40 hours per week. Figure 24. Johnson and LoSasso (2000) found that children are more likely to help parents when the parent is in poor health and lacks other social supports, such as a spouse or other adult children. The financial situation of the parent does not appear to impact whether or not children provide assistance. Adult children are more likely to provide care to mothers than they are to fathers. The type of care provided is correlated to gender. Women are more likely to provide personal care, tend to housekeeping tasks, and prepare meals while men are more likely to provide transportation, attend to home repairs and manage the money (Tennstedt, 1999). Research shows that the majority of expenditures for both informal and formal care go towards housekeeping, personal care and meals, in that order. This suggests that formal care purchased by caregivers is used to augment the care they provide informally rather than to add more types of support (Tennstedt, 1999). COSTS OF CAREGIVINGNationally, it is estimated that informal caregivers provided 22 to 26 billion hours of caregiving in 1997 with an estimated value of $196 billion. In comparison, national expenditures for formal home care total $32 billion and nursing home care $83 billion. For Texas, it is estimated that 1.79 million informal caregivers provided 1.667
Many caregivers are employed outside the home - between a third and two-thirds. However, caregiving impacts employment with 9% leaving employment because of caregiving demands (ASA, 2000). In fact, research shows that employed caregivers adjust employment to accommodate caregiving rather than the other way around (Tennstedt, 1999). According to Juggling Act, a study on the caregiving and work dilemma (National Alliance, 1999), 84% of respondents made at least one adjustment to their work schedule to accommodate caregiving. Adjustments include using sick leave or vacation time, decreasing work hours, taking a leave of absence, moving from full to part time work, leaving employment and retiring early. For example, Johnson and LoSasso (2000) found that for men and women between the ages of 53 and 65, 100 hours of assistance to parents in a twelve month period
wealth over a lifetime was $659,139 which includes lost wages, Social Security and retirement contributions (1999 dollars). Employees are not the only losers in this deal. It is estimated that employers lose $11-29 billion annually in lost productivity (National Alliance, 1999). Caregiving can also exact a toll on physical and mental health. Research indicates that caring for a disabled older adult can increase stress, depression, and morbidity. A study reported in JAMA in 1999 found that caregivers who provide support to their spouse and report stress from providing care are significantly more likely to die earlier than non-caregivers (Schulz & Beach, 1999). CARING FOR CAREGIVERSIn the last couple of decades, it has become apparent that caregivers need support along with the older adults. Because caregivers are such an important resource, it is essential that any plan that addresses the issues facing older adults includes the issues of caregivers. Public policy has begun to shift in support of caregivers. The most important change in policy is the passage of the Family and Medical Leave Act (FMLA) of 1993. This federal law requires that certain employers provide 12 weeks of unpaid leave for eligible employees to take care of family members with a serious health condition. Most recently, Congress reauthorized the Older Americans Act which included a new program, the National Family Caregiver Support Services Program. The initial authorization is $125 million (Email from Francisco Acosta, November 2000). Additionally, employees may receive help from employers through employee benefit programs. However, the 1998 Business Work-Life Study found that only 23% of companies with 100 or more employees offer resource and referral for elder care. Nine percent (9%) offer long term care insurance, and only 5% make financial contributions to community based elder care programs (Galinsky & Bond, 1998). TRENDS AND THE FUTURE OF CAREGIVINGA number of societal trends are impacting the ability of families to provide care for older adult relatives. These issues are important to consider in planning for the future.
CURRENT EFFORTSRespite - The Texas Department of Human Services (TDHS) and the Area Agency on Aging (AAA) of the Capital Area currently offer respite care, allowing caregivers to take a break from caregiving. An exact number of Travis County residents receiving services is not available. However, in 1998, TDHS served 8,800 individuals per month (includes those caring for older adults and disabled individuals in Region 7, a 30 county area, which includes Travis County). In 1999, the AAA served two people.6 Caregiver Support Groups - Four groups serve the Austin/Travis County area, some of which are specifically for individuals caring for those with Alzheimer's. Other Services - A number of other non-profit agencies provide services that assist caregivers by providing direct client services. Such services include transportation, home delivered meals, home health aides, and homemakers. (See Appendix A for more information.) Table 15.
Best PracticesSeveral programs around the country are considered "best practices" in providing support to family caregivers.
These programs all share certain key characteristics that are considered essential to supporting caregivers:
THE ROLE OF THE LOCAL COMMUNITYThe contribution at the local level to care and support for older adults is a critical piece of the system. The funds and services described in this section help fill in the gaps in services that are not covered by other resources. A comprehensive assessment of the community's investment in services for older adults is not available. Most agencies collect information by type of service provided, not by population served. Also, many times, services for older adults are combined with services for individuals who are disabled. Thus, the information provided here does not provide the complete picture. Table 16 shows a sample of public and private non-profit investments totaling more than $2.8 million during the 1999-2000 fiscal year (includes both amounts for services provided directly to individuals and those purchased from other service providers). Despite this seemingly large investment, providers must turn away individuals needing services due to a lack of capacity. Many providers have waiting lists for services. Table 16.
*Includes Senior Activity Centers, Transportation Services,
Congregate Meals Program, Old Bakery and Emporium, and Employment Program. These funds purchase a range of services that address the needs of older adults, including respite care, employment assistance, guardianship, transportation, and social activities. This figure does not reflect the millions of dollars worth of volunteer time that is dedicated to programs that serve older adults. In addition, many programs are not specifically designated as "elderly" programs, even though a percentage of the population they serve includes the older adult population. For example, Austin/Travis County MHMR Center does not have programs that specifically target the older adult, although some of their clients are older adults. The figures shown represent programs that are specifically for older adults in Travis County. Additional investors include State and Federal agencies, as well as local non-profit, faith based, and public/private partnerships. These include, but are not limited to:
Again, this is just a sample of the investment being made in Austin and Travis County. As evidenced in the current efforts sections throughout this report, numerous organizations and services exist to support this group. For a comprehensive list of organizations and services, see Appendix A. The Current Efforts Table offers information about community based, governmental and private programs that are serving older adults. One large group of providers not included is faith based organizations. They play a significant role in providing basic needs such as food and clothing to older adults and others in the community. 2 While LTC applies to individuals who are younger
than 65, such as those with mental retardation or developmental disabilities,
60% of the individuals using LTC services are aged 65 and older. The vast
majority of LTC funds (80%) go to care for individuals with MR/DD (Coleman,
1999). Care for individuals with MR/DD is substantially more expensive than
care for non MR/DD elderly. |
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