Printer Friendly

Unserved, unseen, and unheard: integrating programs for HIV-infected and HIV-affected older adults.

A fundamental reason for social workers to be able to access services through both the Older Americans Act (OAA) of 1965 (EL. 89-73) and the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 (P.L. 101-381) is social works ecological and family-centered practice models. We argue that social workers should know the rudimentary provisions of these two important pieces of federal legislation. No matter the setting or primary population, practitioners will likely meet and work with older adults who are either infected with or affected by HIV disease. Because aging and AIDS are ubiquitous in social work practice, social workers need to be more prepared to provide case management and referrals in those areas.

Another compelling reason for social workers to know something about both the aging and HIV networks is that older adults living with HIV or taking care of someone with HIV often are unseen and unheard by practitioners and policy makers. HIV case managers and counselors tend to not know about services for older Americans; similarly, gerontological workers have insufficiently explored HIV services (Anderson, 1998). Programs under the OAA and Ryan White CARE Act constitute separate systems of care. Few social workers understand the resources available in both programs and may not use the full range of options with their older clients.

Older adults with HIV can fall between the cracks of the aging and HIV services systems, which do not communicate or coordinate as effectively as they could or should. The HIV and aging networks have interfaced in some areas for two decades. Some local Councils on Aging took it upon themselves to offer home-delivered meals to people disabled because of HIV. Some AIDS services organizations have reached out to older people, and some Medicaid waiver programs have taken on programs for elderly and disabled people along with services for people with HIV. In general, however, the two networks have not often or easily intersected, resulting in a benign neglect of elderly people who are infected with HW or affected by HIV.

Specialized practitioners maybe uncomfortable in either the aging or the HW arenas for several reasons. First, social workers are not immune to ageist beliefs and stigmatizitation of HIV and may consciously or unconsciously avoid learning about another field. Second, social workers tend to be stressed and stretched thin and often can study only a limited number of issues and service systems. HIV advocates may feel that they do not have time to seek knowledge on aging, and gerontologists may not be able to keep up with the complexities of the HIV field. Third, professional and on-the-job learning tend to be narrowly focused because there is much to learn about every topic and population, and social workers are not routinely cross-trained. This article is intended to be a first step to closing this gap.

HIV-INFECTED OLDER ADULTS

Although HIV disease has been viewed as affecting young adults and people in early middle age (Riley, 1989), individuals over age 50 with AIDS have been reported over the course of the pandemic (Ory & Mack, 1998). Throughout the tracking of HIV infection by the Centers for Disease Control and Prevention (CDC), 10 percent to 12 percent of U.S. residents diagnosed with AIDS have been age 50 and over (CDC, 2002), which translates to 90,513 AIDS cases as of December 2001 (CDC, 2002) (Table 1). This figure does not include older adults diagnosed with HIV (not yet AIDS) or those who received an AIDS diagnosis before age 50 and have "aged in" with the disease. Ory and Mack suggested that when these figures are adjusted for estimates of actual age rather than age at diagnosis, the proportion of cases 50 years and older is closer to 15 percent. (Although age 50 is not considered old, until recently CDC did not stratify AIDS surveillance numbers past that age, which is why discussions of HIV and aging in the United States must consider people age 50 and older. International HIV statistics from the United Nations stop at age 49.)

Several trends in recent years suggest that the infection of older people and the need for care will continue to rise. A 1998 report from the CDC revealed that new cases of AIDS rose twice as fast in the older population than in younger individuals (CDC, 1998). During the period 1991-96, new cases of AIDS in adults over age 50 rose 22 percent compared with a rise of 9 percent among individuals ages 13 to 49 (Ory & Mack, 1998). More recent data from the Health Resources and Services Administration (HRSA) (2001c) indicated that the incidence of gonorrhea among individuals ages 45 and older increased 27 percent from 1995 to 1999, suggesting a growing risk of HIV among older Americans. Current trends point not only to risk of infection, but also to care needs and longevity. HRSA (2001a) reported that a growing proportion of deaths from AIDS is occurring among older individuals. In 1994, one in four deaths from AIDS occurred among people ages 45 and older. By 1998 the proportion had risen to one in three, despite the advent of highly active antiretroviral therapy.

In many ways, people over age 50 who have HIV have the same experiences as younger people: They are infected in the same ways, live with HIV stigma, and must learn to obtain appropriate care and to manage complicated treatments. In other ways, people over age 50 may have different struggles. Some differences may result from a cohort effect and history, whereas other issues are more physical or psychosocial in nature. The literature on older gay men and lesbians provides, at minimum, a historical context for some older adults living with HIV/AIDS. Morrow (2001) reminded us that older sexual minority groups came of age when gay-related hate and violence were more pervasive and heterosexism and homophobia remained unchallenged (Grossman, D'Augelli, & O'Connell, 2001). For example, many older gay men who grew up before the 1969 Stonewall rebellion are perhaps less comfortable talking candidly about their sexual practices (Grossman, 1995; Whipple & Scura, 1996). For many years the social construction of U.S. society held homosexuality as a mental illness and a sign of moral depravity (Morrow). Such historical context helps explain why older gay men may refuse to request information about complicated medical conditions (Humphrey's & Quam, 1998) and may remain isolated from services and social support. The HIV literature has suggested cohort differences among older adults regardless of risk factors or sexual orientation. Older HIV-affected individuals may be afraid to seek formal or informal assistance, because for older cohorts in general, sharing secrets outside the family seems weak and inappropriate. In addition, older individuals may anticipate that their contemporaries will harshly judge drug and sex behaviors; therefore, they may feel the stigma more intensely than do younger people (Solomon, 1996). Many older women were raised with norms that prohibited an open discussion of sexual matters.

Older people who have HIV/AIDS also face physical and psychosocial challenges. For example, as a result of normal aging processes and comorbidity associated with increasing age, older individuals with HIV are likely to have more physical, medical, cognitive, and pharmaceutical complications than younger people (Hirshhorn, 2001). Problems with comorbidity and lowered clinical suspicion may be two reasons older people with HIV/AIDS are misdiagnosed with more common conditions of old age. HIV has been misdiagnosed in older individuals as Alzheimer's disease, Parkinson's disease, cancer, chronic obstructive pulmonary disease, and non-AIDS-related pneumonia (Finestone, 1993; Mirra, Arnaud, & Spria, 1986; Weiler, Mungas, & Pomerantz, 1988). Older people have higher rates of mortality than younger people do (CDC, 1998; Emlet & Farkas, 2001; Ferro & Salit, 1992) and shorter lengths of survival from the time of diagnosis (Berecochea, 1991; Emlet & Farkas, 2002; Newton & Adler, 1990).

Although many older adults living with HIV/ AIDS have adjusted well to their illness, Heckman and colleagues (2002) suggested that a "sizable minority of HIV-infected older adults" show psychological symptomatology. Individuals who receive less social support, experience barriers to services, and experience HIV-related stigma have been found to have higher incidences of psychological symptoms (Heckman et al.). Because several studies have found older individuals with AIDS more likely to live alone than their younger counterparts (Crystal & Sambamoorthi, 1999; Emlet & Berghuis, 2002; Emlet & Farkas, 2001), it is important to recognize that decreased social support can be a complicating and serious issue. A vignette drawn from the caseload of the first author while employed as an HIV social worker, provides a snapshot of an HIV-infected elderly person discussed later in the article.
 A. is a 60-year-old, bisexual Filipino diagnosed
 with AIDS. A. became infected with HIV in a closeted
 sexual relationship with a male partner. He
 lives with his wife and has two grown children (a
 son and a daughter) living on their own in the
 same community and a teenage son living at
 home. A. disclosed his diagnosis to his wife and
 his grown son. His wife was not aware of his bisexuality
 until he became ill, and his daughter
 and teenage son have not been told of his diagnosis.
 A. complains of social isolation and needing
 more care than his working wife can provide.
 He feels cut off from his extended family and is
 fearful of the stigma he would endure if he were
 forthcoming about his diagnosis and sexual practices.
 He told many family members he has cancer.
 Dependent in several activities of daily living,
 A. needs help with meal preparation, bathing,
 and management of his medications, particularly
 when his wife is at work.


HIV-Affected Older People

People over age 50 are affected by HIV as caregivers for adults and children with HIV/AIDS. When an adult with end-stage HIV needs care, he or she typically returns to the home of aging parents (Joslin, Mevi-Triano, & Berman, 1997). When HIV-infected and HIV-affected children are orphaned by HIV, their care is most often taken over by grandparents or great-grandparents (Levine, 1993). Older adults with HIV are frequently cared for by friends, partners, or parents who are also older. Frequently, older HIV informal caregivers are struggling with their own aging and health concerns and are not prepared to give care or raise children or provide care to multiple family members and face difficult family dynamics (Allers, 1990; Emlet, 1996). Many older HIV-affected caregivers neglect their own health, are vulnerable to burnout or illness, lack social support, and feel the effects of HIV-related stigma acutely (Poindexter, 1997). Older people who lose their adult children to HIV are robbed of the family caregivers on whom they might have counted when they are ill or dying. The following case summary illustrates a scenario of an older caregiver interviewed by the second author for a research project.
 C. is a 72-year-old divorced African American
 who left her home in the South and moved to the
 northeast because of the birth of her grandson,
 who is now seven years old. Her daughter called
 her from the hospital after giving birth to the
 grandson, and told her that she had just tested
 positive for HIV. C. cared for her daughter as she
 died and is now the only caregiver for her grandson,
 who is on combination therapy and has been
 periodically symptomatic from HIV infection. C.
 struggles with health problems, which limit her
 functioning: she has chronic digestive, visual, and
 mobility difficulties (especially with stairs and
 driving), and she is frequently tired. She lives on
 the third floor of a building with no elevator, and
 some days she is not able to leave the house because
 she cannot negotiate the stairs. She has a
 teenage granddaughter who does the grocery
 shopping for her and brings them up the stairs.
 C. receives no services from HIV services organizations.
 She uses the Council on Aging van to go
 to her own appointments, but the van does not
 allow children on board, so she cannot take her
 grandson to his appointments in that way.


OVERVIEW OF DELIVERY SYSTEMS

Historically, systems of care, influenced by public policy, have focused on particular needs or populations. Such focus has tended to separate issues that may be connected such as the aging and HIV issues.

Older Americans Act

The OAA of 1965 was one of President Lyndon B. Johnson's Great Society programs designed to benefit older people (Estes, 1979). Acknowledging the aging population as an emerging group with growing social needs, the OAA was designed to address those needs at the community level (Stupp, 2000). The act created the Administration on Aging (AOA) and authorized grants to states for community planning and services programs and for research, demonstration, and training projects in the field of aging. The OAA called for specific attention to elderly people with the greatest social and economic need. Today the OAA has firmly established the aging network, which includes 57 state units on aging, approximately 650 Area Agencies on Aging, and 220 tribal organizations representing 300 native American tribes (Takamura, 2001). Titles I and II are administrative and do not provide for local services. Because the focus of this article is concerned with the direct provision of services, these titles will not be discussed.

Title III of the act supports congregate and home-delivered meals, transportation, senior centers, health promotion, and legal and homemaker services. Title IV focuses on training, research, and discretionary projects and programs through applied social research and analysis. Innovative programs and services may be funded through Title IV with the hope of replicating effective programs through the dissemination of results. Training programs for personnel in the field of aging may be included (AOA, 2001b).

Of particular importance to HIV-affected caregivers is a 2000 expansion of Title III--the National Family Caregiver Support Act (P.L. 106-501). This addition (Part E) offers services to family caregivers, grandparents, or other older relatives who are caregivers of a child under 18 years of age. A relative caregiver is defined as a grandparent or step-grandparent of a child or a relative of a child by blood or marriage, who is age 60 or older and lives with the child; is the primary caregiver of the child because the biological or adoptive parents are unable or unwilling to serve as the primary caregiver; has a legal relationship to the child, such legal custody or guardianship; or is raising the child informally (National Family Caregiver Support Act, 2000). This provision can be important to older caregivers affected by the HIV/AIDS pandemic, whether they are providing direct care to infected adult children or raising grandchildren because of the illness or death of natural parents. Services allowed under this section may include information to caregivers about available services, assistance regarding service access, individual counseling, the organization of support groups for caregivers, caregiver training, and respite care (AOA, 2001b).

Ryan White CARE Act

The Ryan White CARE Act of 1990 was the first national service delivery mechanism to aid people with HW and remains the largest federal discretionary financial allocation specified for HIV-related health and support services. The CARE act created programs to enhance inpatient and outpatient medical care, to improve access to medications and treatment, and to coordinate community-based social services.

Services under Title I, targeted to metropolitan areas with the highest incidence of reported AIDS diagnoses, can include early intervention (such as outreach, counseling and testing, and referrals) and outpatient health and support services (such as outpatient and inpatient health services, substance use counseling, mental health treatment, and case management).

Services through Title II vary by geographic area, because they are determined by local and regional care consortia. Services that can be funded through Title II include outpatient and home-based health care, outreach, case management, linkages to social and medical services, care coordination, durable medical equipment, personal care services and homemakers, home-based drug therapy and prescription drugs, diagnostic testing in the home, mental health services, or continuity of health insurance coverage. Title II also provides access to pharmaceutical treatments through the AIDS Drug Assistance Program (ADAP), available to adults and children with HIV in both metropolitan and nonmetropolitan areas.

Title III funds comprehensive primary health care for people with HIV. Services include risk reduction counseling, antibody testing, medical evaluation, antiretroviral treatment, case management, and medical, nutritional, and oral care.

Title IV, targeted specifically to children, youths, women, and families, funds mental health and substance use services, inpatient hospitalization, medical care, case management, social support, transportation, child care services, counseling, respite care, parenting education, and permanency planning. Title IV also can provide supportive services to HIV-affected families, including grandparent caregivers of HIV-infected or HIV-affected children and teenagers.

The last section of the act, Part F, created Special Projects of National Significance for developing and evaluating essential community-based services infrastructures to meet the needs of special and underserved populations (such as rural populations, adolescents, indigenous peoples, homeless individuals and families, people with hemophilia, and prisoners). Part F also provides for dental care (HRSA, 2001b).

The 2000 reauthorization strengthened the CARE act through an increased emphasis on improving access to treatment and services for HIV-positive individuals who are not in care, augmenting linkages between health and social services, enhancing systems capacity in historically underserved communities, encouraging participation of affected communities in planning efforts, and identifying and serving communities with emerging needs (HRSA, 2000).

Not only can the CARE act serve older individuals with HIV, it can offer support to older caregivers of HIV-infected adult or child family members. Title I planning councils and Title II consortia are tasked with assessing and meeting needs in a community; thus, the needs of HIV-affected older caregivers could be taken into account when funding is discussed. The act also targets women, children, and families through set-asides and demonstration projects, which could include older care providers (HRSA, 2000; HRSA, 2001b).

Intersections of the Two Acts

The OAA and Ryan White CARE Act are similar in several ways (see Table 2). Both target specific populations; both must be reauthorized periodically; both are block grant programs originating with the U.S. Department of Health and Human Services and delivered through state and local entities that determine need and subcontract for services delivery; and both address the importance of consumer input and local decision making in the direction and allocation of resources at the local level. The OAA requires each Area Agency on Aging to establish an advisory council consisting of older individuals (including ethnic minority individuals) who are participants or who are eligible to participate in programs assisted under this chapter (Older Americans Act, 2000 amendments). In addition, guidelines under the new Family Caregiver Support Program allow area agencies on aging to develop advisory councils for their family caregiver programs, offering another opportunity for consumer input. Likewise, the Ryan White CARE Act requires consumer participation at the local level by stipulating that one-third of local planning council or consortia members be HIV-infected individuals.

Although both acts provide important advocacy efforts at the federal level for their targeted populations, the core is services provided at the local level. Both acts provide case management, counseling, and referrals and allow services for family members and caregivers.

Coordination between the two systems could eliminate duplication of case management or services and lessen the danger of missing vital services because the case manager is not aware of what is available from the other service arena. The OAA stipulates that case management services be coordinated with, rather than duplicate, case management services provided through other federal and state programs. This requirement suggests that community-based services for HIV-infected or HW-affected older people should be coordinated between HIV and aging services.

An important difference between the two systems is coverage for medications. The OAA does not pay for any medications. This gap can be partially filled for HIV-positive older people through the CARE act, which covers some HIV-related medications through the AIDS Drug Assistance Program.

ILLUSTRATIONS OF THE UTILITY OF SERVICE INTEGRATION

Our premise is that if services allowed under the Older Americans Act and Ryan White CARE Act were well coordinated, services for vulnerable and sometimes invisible older people infected with and affected by HIV could be enhanced. We return to the vignettes as exemplars of how this might be accomplished.

Because A. is 60 years old and has HIV, he is a prime candidate for services. It is critical for him to be followed by a case manager; duplication of this service is not necessary if the case manager is skilled in the areas of aging as well as HIV. Because of his complicated schedule of medications, the expertise of a physician and public health nurse knowledgeable in HIV is essential. This specialized medical care can be obtained through the CARE act's AIDS Drug Assistance Program, thus lessening the financial burden on A's family. Assistance with personal care could come from either system, and if needed, could combine to provide him with additional levels of service. His medication supervision and monitoring could be handled through enrollment at an adult day health care center, and socialization could also be enhanced through the friendly visitor program funded by the Area Agency on Aging. Given that A. chose not to disclose his HIV status to some family members, home visits and support from aging services may help keep his HIV status confidential. Even the subtlest act, such as mailing information to a client's home from an AIDS Services Organization can compromise confidentiality in delicate situations. Services through the Family Caregiver Support Program of the OAA may help A.'s wife with counseling or respite services. She may benefit from information on HIV testing for herself. Services carefully coordinated through interagency case conferences can provide A. and his wife with nonduplicative care, enhancing each system's services and providing the most benefit to the consumer through choice of options.

As an HIV-affected caregiver, C. is also eligible for case management through the CARE Act or through the caregiver section of OAA. A good case manager from either system could help C. develop an integrated way to meet her (and her grandson's) needs. Through the aging network, she could receive home-delivered meals, which would help with grocery shopping and food expenses; attend a senior center when her grandson is in school, which would help with her isolation; and get her custody and permanency planning questions answered through legal services. Through the National Family Caregiver Support Program, C. could receive respite, which could give her a break from child care and health care, which could help with her comfort and functioning. The information and referral services could link her to other community resources or individual or group counseling, which could lessen her emotional and social burden. She could receive several services for her grandson through the CARE act that would make her caregiver situation less stressful: dental and medical care; transportation to his doctor's appointments; childcare or respite; and payment of his medications. For herself, she could receive HIV case management services, linkages to other HIV-affected caregivers, recreational and social opportunities with other HIV-affected families, information and referrals, homemaker services, and counseling.

IMPLICATIONS

Direct Practice

Older people with HIV concerns may feel unwelcome and uncomfortable in the AIDS services network, which they may perceive to be for younger people, and in the aging network, which they may see as unfamiliar with HIV. Social workers in AIDS Services Organizations and the aging network should strive to identify older individuals who are HIV-infected or HIV-affected and develop and offer relevant services. HIV service providers could offer support groups for HIV-infected or affected elderly people. Aging networks could provide HIV-related education programs in senior centers and nutrition programs. Gerontological case managers can respectfully ask older individuals if they have any HIV questions or concerns, normalizing the issue and giving permission to speak about it. At a very practical level, social workers need to know where services funded through the OAA and the Ryan White CARE Act can be obtained. For example, the Eldercare Locator is a national toll-free directory assistance service of the U.S. Administration on Aging that helps people locate aging services in every community throughout the United States. Since 1991 more than 660,000 calls have been received from families, friends, caregivers, aging professionals, and older individuals seeking direction on where to look for services (Administration on Aging, 2001a). The Eldercare Locater can be reached by phone (800-677-1116) or on the Internet (www. eldercare.gov). Service providers needing information on services available through the Ryan White CARE Act can find Title I contacts by region and Title II contacts by state at the Health Resources and Services Administration Web site on the Ryan White CARE Act (http://www.hab. hrsa.gov/programs.htm). At the local level, information about HIV services could be obtained by contacting the local department of public health or the HIV planning council.

Systems Coordination

The aging and HIV systems of care could and should intersect more effectively and efficiently. As exemplified by A. and C., older people infected with or affected by HIV may present with service needs that cannot be met in one system of care (Joslin & Nazon, 1996). Clients whose needs cross the boundaries of the OAA and Ryan White CARE Act may be able to obtain multiple services from a single provider, or providers from different networks may need to communicate and coordinate services to provide the best possible care. HIV and aging services systems should coordinate their efforts in other ways as well. Task forces, care coordination, educational workshops, and collaborative grant writing are possible starting points.

An excellent example of systems coordination can be found with the New York Association on HIV Over Fifty. The New York City HIV/AIDS and Aging Task Force was created in 1991 to bring professionals from AIDS and aging networks together to address the impact of the HIV/AIDS epidemic on older adults (Nokes, 2004). The association has approximately 80 members, including health and social services professionals and consumers over age 50 who are living with HIV/AIDS. The association is an exemplar of a long-standing coalition operated under the model of shared governance (Nokes). Other geographical areas have also developed AIDS and aging task forces. A partial listing can be obtained through the National Association on HIV Over Fifty (NAHOF) (www.hivoverfifty. org).

Research

Participatory and action research is needed to determine and design services that are responsive and accessible for older HIV-infected and HIV-affected people. We cannot know how to make consumers feel welcome in our systems or what services are needed without asking them. Survey research with HIV-infected and HIV-affected older adults can help us understand the systems of care they use and are familiar and comfortable with and why.

Outreach

Ageist attitudes may persist that HIV prevention efforts are wasted on older adults (Poindexter & Linsk, 2000). Realizing these efforts are not in vain outreach to older adults should include workshops and training focusing on basic HIV information "safe" sexual and drug use, and HIV testing (NAHOF, 2002). Materials on HIV should be made available at senior centers, residential facilities, and recreational groups (Poindexter & Linsk). In addition, media and marketing campaigns can raise HIV awareness among older people.

Education

University classes in gerontology, HIV, sexuality, family therapy, human behavior in the social environment, group work, and individual counseling should acknowledge the intersection of HIV and aging and challenge learners to expand their thinking and explore integration of systems. Educators could offer workshops on HIV and aging to social workers, health care practitioners, and gerontologists through continuing education programs and professional conferences. The knowledge of social work faculty can be enhanced through faculty development institutes. Social workers can provide older adults with outreach and education about HIV/AIDS. HIV prevention and education programs have helped older adults understand HIV risk, condom use, and myths surrounding HIV and aging (McGinn & Skipp, 2002).

CONCLUSION

An integrated service system that does not exacerbate barriers for older HIV-infected and HIV-affected adults would be useful. Social workers--charged as change agents, advocates for vulnerable populations, and case managers--must understand federal policies for people with HIV, older people, and older people with HIV or caring for those who have HIV. We challenge HIV and gerontological social workers alike to explore the service system and policies with which they are least familiar. Increased knowledge, understanding, and coordination among systems of care are necessary to keep vulnerable older adults from being neglected in two structures, both designed to extend their years of life and improve the quality of those years. It is vital that this population not remain unseen, unheard, and unserved.
Table 1. AIDS Cases by Sex, Age at Diagnosis, and Race/
Ethnicity, Reported through December 2001, United States

 White, not Black, not
 Hispanic Hispanic Hispanic
Age at Diagnosis
(years) No. (%) No. (%) No. (%)

Male
 Under 5 535 (0) 2,165 (1) 783 (1)
 5-12 346 (0) 498 (0) 284 (0)
 13-19 916 (0) 1,020 (0) 570 (0)
 20-24 7,938 (3) 7,590 (3) 4,520 (4)
 25-29 38,967 (12) 26,595 (12) 17,138 (14)
 30-34 71,345 (23) 46,088 (20) 28,377 (23)
 35-39 71,995 (23) 51,302 (22) 27,047 (22)
 40-44 52,653 (17) 41,395 (18) 19,215 (16)
 45-49 32,116 (10) 24,839 (11) 10,937 (9)
 50-54 17,498 (6) 12,959 (6) 5,861 (5)
 55-59 9,337 (3) 6,987 (3) 3,242 (3)
 60-64 5,139 (2) 3,819 (2) 1,769 (1)
 65 or older 4,249 (1) 3,242 (1) 1,455 (1)

Male subtotal 313,034 (100) 228,499 (100) 121,198 (100)

Female
 Under 5 502 (2) 2,153 (3) 770 (3)
 5-12 196 (1) 521 (1) 223 (1)
 13-19 295 (1) 1,250 (1) 316 (1)
 20-24 1,774 (6) 4,844 (6) 1,625 (6)
 25-29 4,831 (16) 11,876 (14) 4,364 (15)
 30-34 6,818 (22) 18,055 (21) 6,418 (22)
 35-39 6,244 (20) 18,351 (22) 5,878 (21)
 40-44 4,199 (14) 13,221 (16) 3,950 (14)
 45-49 2,307 (7) 6,922 (8) 2,249 (8)
 50-54 1,309 (4) 3,447 (4) 1,245 (4)
 55-59 816 (3) 1,865 (2) 750 (3)
 60-64 519 (2) 1,103 (1) 411 (1)
 65 or older 1,044 (3) 1,073 (1) 355 (1)

Female subtotal 30,854 (100) 84,681 (100) 28,554 (100)

Total (2) 343,889 313,180 149,752

 American
 Asian/ Indian/
 Pacific Alaska
 Islander Native Total (1)
Age at Diagnosis
(years) No. (%) No. (%) No. (%)

Male
 Under 5 17 (0) 12 (1) 3,515 (1)
 5-12 10 (0) 6 (0) 1,146 (0)
 13-19 26 (0) 23 (1) 2,555 (0)
 20-24 181 (3) 84 (4) 20,337 (3)
 25-29 675 (13) 351 (17) 83,794 (12)
 30-34 1,161 (22) 536 (26) 147,600 (22)
 35-39 1,169 (22) 473 (23) 152,124 (23)
 40-44 927 (17) 303 (15) 114,585 (17)
 45-49 558 (10) 134 (7) 68,635 (10)
 50-54 301 (6) 63 (3) 36,718 (5)
 55-59 177 (3) 37 (2) 19,801 (3)
 60-64 76 (1) 18 (1) 10,829 (2)
 65 or older 76 (1) 17 (1) 9,048 (1)

Male subtotal 5,354 (100) 2,057 (100) 670,687 (100)

Female
 Under 5 17 (2) 13 (3) 3,460 (2)
 5-12 10 (1) 0 (0) 953 (1)
 13-19 8 (1) 4 (1) 1,873 (1)
 20-24 46 (6) 36 (8) 8,328 (6)
 25-29 116 (14) 69 (14) 21,266 (15)
 30-34 146 (18) 105 (22) 31,564 (22)
 35-39 142 (18) 95 (20) 30,733 (21)
 40-44 121 (15) 61 (13) 21,560 (15)
 45-49 74 (9) 48 (10) 11,607 (8)
 50-54 37 (5) 22 (5) 6,062 (4)
 55-59 29 (4) 18 (4) 3,479 (2)
 60-64 29 (4) 5 (1) 2,069 (1)
 65 or older 28 (3) 4 (1) 2,507 (2)

Female subtotal 803 (100) 480 (100) 145,461 (100)

Total (2) 6,157 2,537 816,149

(1) Includes 545 males and 89 females whose race/ethnicity is unknown.

(2) Includes 1 person whose sex is unknown.

SOURCE: Centers for Disease Control and Prevention. (2002).
Surveillance Report, 13(2), Table 7. Retrieved from http://
www.cdc.gov/hiv/stats/hasr1302.htm

Table 2. Side-by-Side Comparison of the Older
Americans and Ryan White CARE Acts

Criteria Older Americans Act Ryan White CARE Act

Eligibility Age 60 and over. HIV-infected or HIV-
 affected.

Funding DHHS (AOA) DHHS (HRSA).

Requires Yes. Reauthorized in Yes. Reauthorized in
reauthorization 2000. 1996.

Local decision body Area Agencies on Aging. HIV/AIDS Consortia and
 Planning Councils.

Consumer Yes. AAA Advisory Yes. One-third of
communities Councils must include members of planning
involved in participants or those councils must be HIV-
planning and eligible to participate infected individuals.
decision making in OAA programs.

Scope of services Community-based social Inpatient and outpatient
 and nutrition services; medical care; medication
 case management and community-based
 services; long-term social services; case
 care advocacy through management and advocacy;
 ombudsman services; transportation;
 caregiver support; complimentary therapies;
 research, training, and mental health and
 demonstration projects. substance abuse services.

Serves caregivers Yes. Title III, Part E, Yes. Title IV requires
and family established the National the coordination of
 Family Caregiver Support systems of care,
 Program and was included targeting HIV affected
 as part of 2000 children, youths,
 amendments. families, and women.

Service providers Local subcontractors. Local subcontractors

Medication No. Yes: AIDS Drug
assistance Assistance Program
 (HIV related medications
 only).

Cost sharing Yes. With limitations Charging for services
 such as use of sliding is not allowed;
 fee scales for some donations are accepted.
 services.

NOTES: DHHS = U.S. Department of Human Services. AOA = Administration
on Aging. HRSA = Health Resources and Services Administration. AAA =
Area Agencies on Aging. OAA = Older Americans Act. See http://www.aoa.
gov/agingsites/state.html for a list of State Units on Aging and Area
Agencies on Aging. See http://www/hab/hrsa.gov for more information on
the Ryan White CARE Act.


REFERENCES

Administration on Aging. (2001a). Eldercare locator. Retrieved October 26, 2002, from http://www. eldercare.gov/

Administration on Aging. (2001b). Selected highlights: Side by side comparison of OAA as amended in 1992 with OAA as amended in 2000. Retrieved June 19, 2001, from http://www.aoa.gov/Oaa/ 2000/side-by-side-fin.html

Allers, C. T. (1990). AIDS and the older adult. Gerontologist, 30, 405-407.

Anderson, G. (1998). Providing services to elderly people with HIV. In D. M. Aronstein & B. J. Thompson (Eds.), HIV and social work: A practitioner's guide (pp. 443-450). Binghamton, NY: Harrington Park Press.

Berecochea, J. E. (1991). AIDS among older people. California HIV/AIDS update, 6, 56-62.

Centers for Disease Control and Prevention. (1998). AIDS among persons aged greater than or equal to 50 years--United States, 1991-1996. Morbidity and Mortality Weekly Report, 47(2), 21-27.

Centers for Disease Control and Prevention. (2002). HIV/AIDS Surveillance Report, 13(2), 1-41.

Crystal, S., & Sambamoorthi, U. (1998). Health care needs and service delivery for older persons with HIV/AIDS. Research on Aging, 20, 739-759.

Emlet, C. A. (1996). Case managing older people with AIDS: Bridging systems--recognizing diversity. Journal of Gerontological Social Work, 27(1/2), 55-71.

Emlet, C. A., & Berghuis, J. (2002). Service priorities, use and needs: Views of older and younger consumers living with HIV/AIDS. Journal of Mental Health and Aging, 8, 307-318.

Emlet, C. A., & Farkas, K. (2001). A descriptive analysis of older adults with HIV/AIDS in California. Health & Social Work, 26, 226-234.

Emlet, C. A., & Farkas, K. (2002). Correlates of service utilization among mid-life and older adults with HIV/AIDS: The role of age in the equation. Journal of Aging and Health, 14, 315-335.

Estes, C. L. (1979). The aging enterprise. San Francisco: Jossey-Bass.

Ferro, S., & Salit, I. E. (1992). HIV infection in patients over 55 years of age. Journal of Acquired Immune Deficiency Syndrome, 5, 348-355.

Finestone, A. J. (1993). Considering AIDS in the elderly. Pennsylvania Medicine, 96(7), 26-27.

Grossman, A. H. (1995). At risk, infected, and invisible: Older gay men and HIV/AIDS. Journal of the Association of Nurses in AIDS Care, 6(6), 13-19.

Grossman, A. H., D'Augelli, A. R., & O'Connell, T. S. (2001). Being lesbian, gay, bisexual and 60 or older in North America. Journal of Gay and Lesbian Social Services, 13(4), 23-40.

Health Resources Services Administration, HIV/AIDS Bureau. (2000, November). HRSA Care Action, pp. 1-3.

Health Resources Services Administration. (2001a). HIV disease in individuals ages fifty and above. Retrieved October 24, 2002, from http://hab.hrsa. gov/publications/hrsaconv/hrsa201/hrsa20l.html

Health Resources Services Administration, Division of HIV/AIDS Services. (2001b). Ryan White CARE Act. Retrieved March 13, 2002, from http://hab/ hrsa.gov

Health Resources Services Administration, HIV/AIDS Bureau. (2001c, February). HRSA Care Action.

Heckman, T. G., Heckman, B. D., Kochman, A., Sikkema, K. J., Suhr, J., & Goodkin, K. (2002). Psychological symptoms among persons 50 years of age and older living with HIV disease. Aging and Mental Health, 6, 121-128.

Hirshhorn, L. (2001, June 22-23). HIV in the aging population: Partnerships in clinical care. Paper presented at the National Association on HIV Over Fifty Conference, Boston.

Humphreys, N. A., & Quam, J. K. (1998). Middle-aged and old gay, lesbian and bisexual adults. In A. Appleby & J. W. Anastas (Eds.), Not just a passing phase: Social work with gay, lesbian and bisexual people (pp. 245-267). New York: Columbia University Press.

Joslin, D., Mevi-Triano, C., & Berman, J. (1997, November 14-18). Grandparents raising children orphaned by HIV/MDS: Health risks and service needs. Paper presented at the 50th Annual Scientific Meeting of the Gerontological Society of America, Cincinnati.

Joslin, D., & Nazon, M. C. (1996), HIV/AIDS and aging networks. In K. Nokes (Ed.), HIV/AIDS and the older adult (pp. 129-141). Briston, PA: Taylor & Francis.

Levine, C. (Ed.). (1993). Orphans of the HIV epidemic. New York: United Hospital Fund.

McGinn, D., & Skipp, C. (2002, June 3). Does gran get it on? Newsweek, p. 10.

Mirra, S. S., Araud, R., & Spria, T. J. (1986). HTLV-III/LAV infection of the central nervous system in a 57-year-old man with progressive dementia of unknown cause. New England Journal of Medicine, 314, 1191-1192.

Morrow, D. F. (2001). Older gays and lesbians: Surviving a generation of hate and violence. Journal of Gay and Lesbian Social Services, 13(1/2), 151-169.

National Association on HIV Over Fifty. (2002). Educational tip sheet: Necessary actions. Retrieved October 26, 2002, from www.hivoverfifty.org/ tip.html

National Family Caregiver Support Act, P.L. 106-501, 114 Stat. 2253 (P.L. 89-73, Title III, Part E) (2000).

Newton, K. E., & Adler, W. H. (1990). The implications of the acquired immunodeficiency syndrome for gerontology research and geriatric medicine. Journal of Gerontology: Medical Sciences, 45, M77-81.

Nokes, K. (2004). Sustaining a coalition: A case study of the New York Association on HIV Over Fifty, In C. A. Emlet (Ed.), HIV/AIDS and older adults: Challenges for individuals, families and communities (pp. 181-189). New York: Springer.

Older American Act of 1965, P.L. 89-73, 87 Stat. 60. 42, U.S.C., subchap. I, [subsections] 3001; subchap. III, [subsections] 3026, part F; subchap. VII, [subsections] 3058g; subchap. III, subpart 1, [subsections] 372 (2000).

Ory, M. G., & Mack, K. A. (1998). Middle-aged and older people with AIDS. Research on Aging, 20, 653-664.

Poindexter, C. C. (1997). Stigma and support as experienced by HIV-affected older minority caregivers. Unpublished doctoral dissertation, University of Illinois, Chicago.

Poindexter, C. C., & Linsk, N. L. (2000). HIV and later life. In V. J. Lynch (Ed.), HIV/AIDS at year 2000: A sourcebook for social workers (pp. 138-147). Boston: Allyn & Bacon.

Riley, M. W. (1989). AIDS and older people: The overlooked segment of the population. In M. W. Riley, M. G. Ory, & D. Zablotsky (Eds.), AIDS in an aging society: What we need to know (pp. 3-26). New York: Springer.

Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990, P.L. 101-381, 104 Stat. 576 to 682. (Public Health Service Act, HIV Health Care Services Program, Titles I to V).

Solomon, K. (1996). Psychosocial issues. In K. M. Nokes (Ed.), HIV/AIDS and the older adult (pp. 33-46). Washington, DC: Taylor & Francis.

Stupp, H. W. (2000). Area Agencies on Aging: A national network of services to maintain elderly in their communities. Care Management Journals, 2(1), 54-62.

Takamura, J. C. (2001). Older Americans Act. In M. D. Mezey (Ed.), The encyclopedia of elder care: The comprehensive resource on geriatric and social care (pp. 468-471). New York: Springer.

Weiler, P. G., Mungas, D., & Pomerantz, S. (1988). AIDS as a cause of dementia in the elderly. Journal of the American Geriatrics Society, 36, 139-141.

Whipple, B., & Scura, K.W. (1996). The overlooked epidemic: HIV in older adults. American Journal of Nursing, 96(2), 23-28.

Charles A. Emlet, PhD, MSW, is assistant professor, Social Work Program, University of Washington, Tacoma, 1900 Commerce Street, Box 358425, Tacoma, WA 98402-5825; e-mail: caemlet@u.washington.edu.

Cynthia Cannon Poindexter, PhD, MSW, is associate professor, Fordham University Graduate School of Social Service, Tarrytown, NY. An earlier version of this article was presented at the 15th National Social Work and HIV Conference, May 2003, Albuquerque, NM. The authors are recipients of the Gerontological Society of America John A. Hartford Foundation Geriatric Social Work Faculty Scholars Award. The writing of this article was partially funded through this support. The authors dedicate this article to the many HIV-infected and HIV-affected people over age 50 who have inspired and taught us over the years. They thank Barbara Berkman, David Hanson, David Harvey, Nancy Hooyman, and Albert Winnett for their insightful and clarifying comments.

Original manuscript received March 20, 2002 Final revision received November 4, 2002 Accepted February 13, 2003
COPYRIGHT 2004 National Association of Social Workers
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 2004 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Author:Emlet, Charles A.; Poindexter, Cynthia Cannon
Publication:Health and Social Work
Geographic Code:1USA
Date:May 1, 2004
Words:6921
Previous Article:The changing face of AIDS.
Next Article:Social support and maintenance of safer sex practices among people living with HIV/AIDS.
Topics:


Related Articles
What educators should know about HIV?
Nearly half of HIV-positive don't get recommended therapy.
HIV virus is still on rise.
Rise in number of people with HIV in Brum.
Yao Ming to star in HIV/AIDS anti-stigma campaign in China.
There are many clinically important interactions between HIV and malaria.

Terms of use | Privacy policy | Copyright © 2021 Farlex, Inc. | Feedback | For webmasters |