POLICY

Older Persons Parenting ChildrenWho Have Lost a Parent Due to HIV

Cynthia Cannon Poindexter

ABSTRACT. This article reviews scholarship regarding older relativesraising minor children in order to highlight the situation of caregiversraising minor children who have lost a parent because of HIV. HlV-af-fected families are a relatively new type of intergenerational groupingwhich deserve a closer examination. It is likely that the phenomenon ofHIV-affected custodial caregiving grandparents will increase, and it is vi-tal that policy makers, practitioners, and researchers explore their needsand assets. The particular challenges of HIV-affected grandfamilies areexplored, then policy and practice issues are addressed in light of their par-ticular relevance for HIV-affected surrogate parents, doi: 10.13(X)/J 194vO5nO4_06[Article copies available for a fee from Tlie Haworth Document Delivery Service:1 -800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website:<http://www.HaworthPress.com> © 2007 by The Haworth Press. All rights re-served.]

Cynthia Cannon Poindexter, MSW, PhD, is Associate Professor, Fordham Univer-sity, Graduate School of Social Service, North Hall, Neperan Road, Tarrytown, NY10591 (E-mail: Poindexter® fordham.eduj.

The author thanks Nancy P. Kropf of the University of Georgia School of SocialWork for valuable comments on a draft.

Joumal of Intergenerational Relationships, Vol. 5(4) 2007Available online at http://jir.haworthpress.com

© 2007 by The Haworth Press. All rights reserved.doi:l0.1300/J194v05n04_06 77

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KEYWORDS. HIV, AIDS, grandparents, grandmothers, aging

This article summarizes and draws conclusions from scholarship re-garding custodial caregiving grandparents and other older relatives rais-ing minor children in order to examine the particular situation ofHIV-affected' custodial grandparents^. While grandparent caregiversare receiving increased scholarly attention, HIV-affected families are arelatively new formulation of intergenerational interaction and deservefocused consideration. The unique situations of HIV-affected grandpar-ents are reviewed, and then policy and practice issues drawn from theliterature on custodial grandparenting are discussed in light of their par-ticular salience for HIV-affected surrogate parents in the United States.^

The U.S. Census Bureau in 2000 estimated 5.8 million grandparentsare co-resident grandparents, meaning they have minor grandchildrenin their households, approximately 2.4 million of whom have primaryresponsibility for raising their minor grandchildren (Simmons & Dye,2003). In 1970, approximately 3% of minor children were living inhomes maintained by their grandparents; by 1997 that figure increasedto 5.5% (Bryson & Casper, 1999). Being female, single, poor, Afri-can-American, or Latino increases the odds of becoming a caregiver forone's grandchildren (Fuller-Thomson, Minkler, & Driver, 2000;Hayslip & Kaminski, 2005; Roe & Minkler, 1998/1999). While teenpregnancy has always been a reason for grandparents to take on childrearing responsibilities, recent grandpaient studies have called attentionto parental substance use (Minkler & Roe, 1993), imprisonment(Dressel & Barnhill, 1994), child maltreatment (Goerge, Wulczyn, &Harden, 1996), or mental illness (Dowdell, 1995) as reasons childrenare being raised by older relatives. Children benefit from stability,structure, continuity, love, and care inherent in these intergenerationalfamily arrangements, and grandparent caregivers are acting as animportant safety net for society (Hayslip & Kaminski, 2005).

Over the last 25 years, HIV has increased the prevalence of grandpar-ent caregiving in the absence of parents. While parenting grandparentsexperience the usual challenges of parenting, they also have addedstresses of their own developmental, financial, and health concerns aswell as special needs of children who have lost a parent. When grand-parents take on care, family structure is reconfigured, norms and expec-tations are adjusted, and relationships are often strained. When thevicissitudes of HIV disease and management of HIV stigma are added,the struggles can seem enormous.

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HIV-AFFECTED GRANDPARENT CUSTODIAL CAREGIVERS

In the US, when children lose a parent to death, it is most often due toHIV, occurring at a higher incidence than cancer or accidents (Levine &Stein, 1994). When a custodial parent dies, it is most likely to be themother, because it is less common for fathers to be primary caregivers,and women are at a much higher risk for heterosexual transmission ofHIV than are men (Levine & Stein, 1994). While it is impossible toknow exactly how many grandparents are raising grandchildren due toloss of parents to HfV, currently it is estimated that approximately 40thousand children in the US are in this category (Joslin, 2002). In addi-tion to expected ups and downs of child rearing, studies have shown thatHIV-affected older caregivers may be contending with HIV stigma andshrinking social networks, children's emotional and behavioral difficul-ties, multiple social problems, their own emotional and physical chal-lenges, and living with ongoing HIV-related grief and unpredictability,all of which are discussed below. These struggles are followed bycoping mechanisms found in HIV-affected older caregiving relatives.

Stigma. HIV-related stigma (experienced and anticipated, externaland internal) creates a major concern in the lives of older caregivers.Their fears about ostracism lead them to hide the presence of HIV in thefamily as part of their role as protectors of children and families, whichdiminish their access to social, emotional, and practical support. Theytend to manage stigma by making careful decisions about whom to tell,based on perceived amount and level of support they might receive afterdisclosure (Poindexter, 2002a). Some are able to not only managestigma, but to resist it, fighting actively against it in their thinking and intheir actions, including their decision to take on HIV caregiving in theface of isolation and virulent stigma (Poindexter, 2002b).

Children's concerns. HIV-affected grandparents are all raising chil-dren who have been traumatized by their loss. All bereaved children arelikely to be struggling with emotional vulnerability, but HIV-affectedchildren have multiple additional stressors due to stigma and secrecy,uncertainty, and sadness due to long-term catastrophic illness and/ordeath of parent or sibling. Their lives can become chaotic as they faceseparation, foster care, poverty, homelessness, drug use, somatic symp-toms, illnesses and deaths of family members, and sometimes their ownHIV disease. Developmental tasks can be severely disrupted by grief ortaking on caregiving tasks for ill parents or siblings (Lewis, 1995). Chil-dren who have lost parents due to HIV, because of trauma they have suf-fered, are at risk for behavioral and developmental problems, some of

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which put them at risk for HIV transmission, such as sex and drug ac-tivity (Levine & Stein, 1994). Minors who have lost a parent becauseof HIV are often not HIV-infected and are therefore not eligible forHIV services. However, they are grieving, harboring secrets, manag-ing stigma, and at risk for behavioral and developmental problems.Linsk and Mason (2004) found that older HIV-affected adults werestressed by the children's emotional and behavioral problems, schooldifficulties, and illnesses.

Social issues. HIV-infected women of child bearing years are morelikely to be of color, low income, and to have poorer health and healthcare, so the majority of children who have lost a parent due to HIV arechildren of color or with few resources (Joslin, 2000; Levine & Stein,1994). HIV-affected families often live within a web of interlockingand complex struggles, such as substance use, other health challenges,incarceration, poverty, homelessness, depression, unemployment, vio-lence, substandard housing, and lack of adequate medical care. Theymay be involuntarily involved with prison systems, child welfare sys-tems, benefits systems, and social service systems, which can be seen asthreats rather than as helpful resources. (Williamson, 1994). HIV-af-fected caregivers may leave the workforce or take lower-paying jobswith less responsibility so that they can meet their caregiving commit-ments; others may depend on fixed incomes like Social Security,pensions, or some form of public assistance (AARP, 1994).

Grandparent struggles. HIV-affected grandparents tend to put theirown emotional and physical needs aside as they concentrate on ill adultsand/or minor children in their care. They are more likely to approachhealth and social service systems on behalf of care recipients rather thanfor themselves (Mason & Linsk 1999; Poindexter, 2002a). Providingpersonal care to an adult or child who is very ill with HIV is often physi-cally taxing and harmful to their health and functioning (AARP, 1994).

Grief and uncertainty. Most HIV-affected grandparents have firstcared for a dying adult child, meaning that they have had a long involve-ment with HIV, leading to a high load of loss, stress, grief, and role tran-sitions. They have been living with HIV stigma, HIV care, illness, anddeath for a while and are likely to feel exhausted emotionally (Joslin,2000). When grandparents are grieving HIV-related deaths of adultchildren, grief can be deepened or complicated by the catastrophic pro-tracted illness, the "off-time" nature of the loss, concurrence with multi-ple stressors, lack of social support, ambivalent relationships or difficulthistories with the deceased, and the hidden or disenfranchised nature ofthe loss due to secrecy and stigma (Levine-Perkell & Hayslip, 2002).

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HIV-affected grandparents who are parenting again are caring for off-spring and grandchildren they had counted on to care for them as theyaged and became more frail; these changing roles and expectations leadto sadness, confusion, stress, difficulty in adjusting (AARP, 1994).

Coping. In addition to the challenges above, scholarship has alsoshown that HIV-affected caregivers tend to find ways to cope and gar-ner meaning from the experience. Qualitative studies of HIV-affectedgrandmothers tend to show a mixed response to the situation: they areenormously challenged and stressed while simultaneously feeling for-tunate. Seven HIV-affected African-American grandmothers in Chi-cago reported intense awareness and accommodation to HIV-relatedstigma, constant efforts to deal with complex caregiving situations,and ambivalence toward the new parenting role. They also demon-strated an equally strong ability to cope through spirituality and resil-ience (Poindexter & Linsk, 1999). Six parenting HIV-affectedgrandmothers in Boston reflected four major challenges in their lives:feeling unprepared to take on parenting again late in life, facing one'sown health and functional difficulties while raising children, feelingburdened by the uncertain disease trajectory, and guarding againstHIV-related discrimination.

Despite these concerns, none regretted the decision to raise the child,and noted four positive aspects of HIV caregiving: satisfaction in therole and joy in the child's life; a good relationship and sense of compan-ionship with the grandchild; the opportunity to stay active and busy; andbeing able to support and be partners with their grandchildren in HIVeducation and activism (Poindexter & Boyer, 2003). Winston (2006) in-terviewed ten African-American grandmothers who had lost an adultchild to HIV while parenting grandchildren and found that they weredetermined to keep the family together at any cost, comfortable with thecaregiving role, and viewing the parenting role as an opportunity, evenas they were grieving. They coped by being flexible, relying on spiritu-ality and religiosity, and keeping memories and connections with thedeceased adult child. Caliandro and Hughes (1998) explored the livedexperiences of 10 African American and Latino grandmothers whowere primary caregivers for their HIV-infected grandchildren and iden-tified multiple themes common to grandmothers related to their care-giving: upholding the importance of the family, maintaining one'sidentity as caregiver and grandmother, living the belief that familiesmust stick together; dealing with the reality of an HIV-infected grand-

. child; managing stigma and medical care, giving the child a normal life,staying strong through spirituality (making decisions, growing as advo-

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cates, controlling emotions, managing fatigue); easing grief for their de-ceased adult child by caring for the grandchild, and living within thedifficult reality of decreasing resources; urban threats, increasingisolation, and protecting grandchildren from the influence of gangs anddrugs.

HIV-affected grandparents must manage HIV stigma and social iso-lation, the emotional and behavioral difficulties of HIV-affected grand-children, multiple social difficulties, their own physical and mentalhealth issues, grief, and the uncertainty of HIV disease. They also ex-hibit many strengths and coping mechanisms as they provide stabilityand care for HIV-affected and HIV-infected children. .These realitiescan be addressed in various ways through existing programs and poli-cies, yet system gaps remain, as outlined below.

SYSTEM OPTIONS AND CHALLENGES

Policies and programs designed for custodial caregiving grandpar-ents also have relevance for HIV-affected grandfamilies, with benefitsand drawbacks specific to the presence of HIV in the family. Here Ipresent legal options for custodial caregivers, followed by gaps in theservice system, particularly in light of HIV-affected grandparent care-givers.

Options for Custodial Caregivers

Many grandparents take on the parenting function without legal au-thority (Karp, 1996; Perez-Porter & Flint, 2000). If they seek to formal-ize their parenting role, there are several options, such as custody,adoption, guardianship, subsidized guardianship, and foster kinshipcare.

Custody. Custody orders provide for physical, but not financial, careofthe child. Custody orders can give a grandparent immediate relief toprotect and care for a child. However, if a parent objects to the custodyrequest, the grandparent must prove the parent unfit, which may exacer-bate family tensions and stresses (Perez-Porter & Flint, 2000). SomeHIV-affected families may have previously suffered rifts due to incar-ceration, abuse or neglect, or substance use, so a custody battle may ex-acerbate their difficulties and further disrupt the child's well-being.

Adoption. Some grandparents choose adoption, an option giving thechild a permanent identity and place. If the family is worried about a

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problematic parent demanding custody of the child later, adoption maybe the best legal alternative. There are limitations to this option, how-ever. A relative can adopt the child only if the biological or legal parentis dead or the parental rights have been terminated. Adoption ends con-tact between the child and biological parents unless it is an open adop-tion (termination of parental rights but with parental contact afteradoption). For many HIV-affected families, the parent is ill but still in-volved, so adoption may not be appropriate. Adoption means the legalparent has financial responsibility for the child, so the family does notqualify for public assistance unless the grandparent does (Kelley,Yorker, & Whitley, 1997; Perez-Porter & Flint, 2000).

Guardianship. Guardianships are awarded by a court when parentsconsent or are unable to provide care themselves; parental rights aresuspended without being terminated, and the grandparent guardian canmake decisions about the child. Parents are still legally responsible andcan be ordered to provide child support. Standby guardianships can beuseful for parents not ready to give up authority because they can askthat someone be put on standby. This facilitates permanency planningand stability for the child and the written designation can be done withor without a court process, but court involvement makes it harder tochallenge. Parental rights are not terminated; parent and guardian haveconcurrent authority. In testamentary guardianships, the guardian isdesignated in the parent's will; this is a recommendation to the court,but has no effect until probate and there is no guarantee that the courtwill agree (Karp, 1996; Perez-Porter & Flint, 2000),

Subsidized guardianship. One option that may be viable for grand-parent caregivers is subsidized guardianship, which offers continuousfinancial support to eligible children who leave the child welfare systemfor permanent care from a legal guardian. Many grandfamilies fall intothis category and may be able to access this program, which is availablein 39 states and the District of Columbia. In this way grandfamiliescould benefit from subsidies without unlimited state oversight and with-out requiring the child to break ties to neighborhood, culture, and bio-logical family. Eligibility, subsidies, and procedures vary by state, butcommonly a legal guardian can apply for a subsidy if reunification andadoption have been ruled out as viable options (Generations United,2006). Subsidized guardianship programs often hold the biological par-ents responsible for child support; if the parent with HIV is still alive butdisabled, this could be a drawback (Allen, Bissell, & Miller, 2003).

Kinship foster care. Oddly, the public welfare system providesgreater benefits and subsidies for foster parents than for biological rela-

84 JOURNAL OF INTERGENERA TIONAL RELA TIONSHIPS

tives or adoptive parents (AARP, 1994; Minkler & Roe, 1993). Rela-tives can sometimes become a "kinship" foster parent, an airangementthat, if approved, allows the caregiver to get financial support for raisingthe child. Usually grandparents who have volunteered to care for thechild are not appointed for kinship care; this situation usually derivesfrom neglect and abuse cases. In addition, foster care is developed withthe goal of return to the parent; this may not be applicable to HIV-af-fected families (Perez-Porter & Flint, 2000). To qualify for kinship carepayments, the caregiver must turn over custody to the state, meet statelicensing requirements, and allow periodical inspections and evalua-tions by welfare workers. They lose the right to make decisions on be-half of the child and cannot travel out of state without permission, andthe child welfare authority can choose to remove the child from theircare. Grandparents may not qualify in the licensing procedure, and ifthey do, they may feel that being a ward of the state puts the child injeopardy and undermines the grandparent's authority (Karp, 1996;Kelley, Yorker, & Whitley, 1997; Minkler & Roe, 1993; Perez-Porter &Flint, 2000). Some states waive some licensing requirements for kin-ship caregivers, which facilitates children being able to stay with theirfamilies (Karp, 1996). As burdensome as kinship foster care may be,kinship care payments may be better for social and emotional well-be-ing, because saying one is on welfare is often more stigmatizing thansaying one is a foster parent. However, grandparents who are not "real"foster parents and are not abusive or neglecti'ul are not as likely to getsupported by overburdened child welfare workers (Minkler & Roe,1993). With the added stigma and secrecy pre.sent in manyHIV-affected grandfamilies, becoming involved in the child welfaresystem may seem overwhelming.

Gaps in the Safety Net

There are several ways in which current policies are insufficient forgrandfamilies, especially regarding housing support, immigrant needs,system complexities, and public assistance, which are discussed below.

Housing. Housing is problematic for caregivers living in substandardhousing or in facilities for older adults, where bureaucratic restrictionsprohibit children from living with them (AARP, 1994; Karp, 1996).Housing Opportunities for People with AIDS [HOPWA], through theAIDS Housing Opportunity Act of 1992, can provide housing assis-tance, home repairs, emergency shelter, or supportive services forlow-income persons with HIV and their families who are homeless or at

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great risk of becoming hotneless. HOPWA funds may be used for abroad range of housing including emergency shelter, shared housing,apartments, single room occupancy units (SROs), group homes, andhousing combined with supportive services. As vital as these servicescan be for grandfamilies, when the person with AIDS dies, the family isno longer eligible for HOPWA and must find other housing or othermeans of supporting their housing costs.

Immigrant needs. If an immigrant family is undocumented and inneed, there is little recourse in most states. Grandparents whose immi-gration status makes them ineligible for benefits may not realize thattheir grandchildren may be eligible for separate benefits. The PersonalResponsibility and Work Opportunity Reconciliation Act of 1996, usu-ally referred to as "welfare reform," eliminated the prohibition of com-munication with the Immigration and Naturalization Service, so askingfor any benefits can lead to deportation. These systems flaws seem tofacilitate poverty for many immigrant caregivers (Mullen, 2000).

System complexities. Eligibility, application, and bureaucratic chal-lenges in the public benefit system may seem insurmountable and/or in-comprehensible, even if one reads and speaks English well. Grandparentcaregivers may be afraid that entering the welfare system puts them atrisk for having the children removed (Minkler & Roe, 1993). It is diffi-cult for caregiving grandparents to know if they are being treated justly,and where to go for appeal (Mullen, 2000).

Public Assistance. Welfare reform restructured assistance to familiesand children as Temporary Assistance to Needy Families [TANF]. Oneadvantage of this option is that caregivers can apply for assistance forthe grandchild through the Temporary Assistance for Needy ChildrenChild-only grant without having legal custody. However, some require-ments may complicate grandparents' attempts to get public support fortheir grandchildren. To get TANF, grandparent must prove the child isdeprived of parental support, that he or she is a caregiver relative [diffi-cult for paternal relatives if the father's name is not on the birth certifi-cate], that the grandchild is in the grandparent's home, and that thegrandchild's resources do not exceed eligibility standards. Grandpar-ents may not qualify financially but still be quite financially strapped(Mullen, 2000). The family financial cap of TANF is to force "personalresponsibility" of biological parents and to "reduce dependency." Omit-ting any debate about the extent to which individuals can be responsiblefor poverty, it is hard to understand how a financial cap relates toparenting grandparents in families where the parents are missing(Kelley, Yorker, & Whitley, 1997; Minkler & Roe, 1993). Welfare re-

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form broke the automatic link between Medicaid and cash assistance.This provision allowed more children to keep Medicaid. However,there is a concern that children may not get Medicaid even if they're eli-gible, because their caregivers now have to make a special application.To obtain Medicaid for a child, a grandparent must prove that he or sheis a relative caregiver and that there is no parental support (Ellwood, &Ku 1998; Mullen, 2000). In addition, only children who are citizens orlawfully admitted immigrants are eligible, so the grandparent applicantmust be able to produce legal documentation for the child (U.S. HHS,2006),

In order to get public assistance on behalf of a grandchild, grandpar-ents must transfer to the state their right to sue for child support. Stateskeep any money recovered from the father; the money cannot go to thechild or grandparent. Grandparents are required to cooperate with childsupport enforcement efforts, meaning providing parents names and ad-dresses, consenting to blood tests for the child, and appearing at hear-ings. This is problematic if they are not sure about the father's name orlocation. Attempts to establish paternity can destabilize informal cus-tody arrangements and may endanger a grandparent's custody. Biologi-cal parents who agreed to the arrangement may withdraw consent if itmeans they have to pay child support; this would then preclude thegrandparent getting public assistance. Any grandparent can lose cus-tody merely because a biological parent challenges it, no matter the fit-ness of that parent (Mullen, 2000). Fortunately, the 60-months totaltime limit for family assistance does not apply to grandparent-headedhouseholds if the grandparent applies for "child-only" support, meaningthat the grandparent leaves himself or herself out of the assistance. Forthe children to be eligible, the parents must be outside the home. Obvi-ously, this is not workable for those HIV-affected families where the illparent is being cared for in the grandparent's home. Grandparents whoare part ofthe assistance, that is, not "child-only," are required to partic-ipate in training or work no later than 24 months after receiving assis-tance (Aaronson & Hartmann, 1996). This is an untenable situation forolder relatives who are in failing health and consumed with raising mi-nor children. Some states require applicants to search for jobs before ap-plying for assistance. How is a financially impoverished 60 year oldgrandmother with three young children going to work? The children arethere because they need parenting by a family member and they havealready faced abandonment, grief, and crisis (Mullen, 2000).

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APPROACHES

If grandparents parenting under difficult circumstances are not af-forded the assistance they need, these challenged families may fall apartfrom stress, leaving the children at a higher risk and in the foster caresystem or, in the case of teens at times, living on the street (Levine &Stein, 1994). Researchers and advocates stress that interventions forgrandparent-headed families should be developed, implemented, andoffered from many perspectives including: systems, partnership, col-laborative, responsive, and family-centered. These approaches areoutlined below.

Systems approach. Practitioners and policy makers should take anecological or systems approach to understand the contextual challengesfaced by intergenerational families, including pressures originatingfrom within and outside the family unit. Efforts should be directed tostrengthen both the family and the social environments. Interventionsshould be developed and implemented nested in the cultures, communi-ties, kin systems, and social networks in which the parenting elders live(Dolbin-MacNab & Targ, 2003; Hayslip & Kaminski, 2005).

Partnership. Program planning, implementation, or evaluation shouldinvolve grandparent caregivers, addressing what they feel they need andusing them as advocates and consultants (Roe, 2000). Services should beoffered within the context of recognizing that the grandparents are ex-perts, survivors, and skilled, yet without continuing to overburden themunnecessarily. Service providers should neither overemphasize self-helpor expert help, but forge partnerships with grandparent caregivers tobetter meet tlieir needs as they define them (Minkler & Roe, 1993).Conducting focus groups and interviews to determine the unmet needsof grandparents-in aging, child welfare, and HIV networks-can assistwith developing programs and safety nets.

Collaboration. Service providers and planners should consider thewhole complexity of the families' needs, not truncating the interven-tions based on agency or funding domains (Dolbin-MacNab & Targ,2003). Coordinated, interdisciplinary, interagency, inter-systemic ef-forts are necessary to avoid bureaucratic fragmentation and narrow foci(Roe, 2000). Grandparent caregivers may perceive the AIDS-servicenetwork as not being meant for HIV-negative caregivers, the aging net-work as not being prepared to address HIV, and the child welfare sys-tem as ill equipped to understand aging or HIV. In actuality,multi-generational families are trying to interact with multiple servicenetworks, yet none of these sectors has developed or funded creative.

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comprehensive, or consistent responses to a type of multi-generationalfamily which is becoming more common.

Responsive. There are flaws in our systems, which can be anythingbut seamless for this population. The death of a parent from HIV canclose an agency's case, leaving the family in trauma and grief but un-supported (Levine, 1993). Transitional services are necessary to closethat gap so that service providers are not abandoning families at theirmost vulnerable (Levine, 1995). Service providers and planners shouldidentify and work to remove barriers to the families' qualifying for andreceiving assistance; barriers include lack of time, resources, experi-ence, and understanding on the part of the grandparent caregivers, andlack of response on the part of bureaucracies (Dolbin-MacNab & Targ,2003; Hayslip & Kaminski, 2005). Legal, educational, housing, wel-fare, justice, and mental health professionals must be trained and pre-pared to work with HIV-affected families (Gruendel & Anderson,1995; Levine, 1995). Coalitions, clearinghouses, information centers,and other organizations formed in partnership with grandparents, vari-ous citizen groups, and agencies can advocate for systems change aswell as provide newsletters, information, and other supportive oreducational materials (Minkler & Roe, 1993).

Family-centered. Service delivery in the HIV field must be morefamily centered. Treating the "client" as an individual designated ser-vice recipient is not effective in working with HIV-affected families,who are likely to have complex and multiple needs. The definition of"families" must be determined by those seeking help, in a way that in-cludes families of choice and traditional notions of kinship (Geballe,Gruendel, & Andiman, 1995). Service models should affirm the fam-ily's resilience, expertise, and efforts; predicated on being supportiveand nonjudgmental of their circumstances; and appropriate to individ-ual and family development stages, cultural perspectives, and a varietyof family structures (Dolbin-MacNab & Targ, 2003; Gruendel & An-derson, 1995). In addition, policymakers need to think intergene-rationally regarding current and proposed policies (Roe & Minkler,1998/1999).

RESPONSES

Given the unique challenges of HIV-affected multi-generationalfamilies, what can be done? Grandfamilies can be helped through a

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range of direct supportive services, financial aid, and legislative re-sponses, as presented below.

Services. Helpful direct services for HIV-affected families includeoutreach, case management [with linkages to juvenile justice, welfare,child welfare, HIV systems], benefits advocacy, legal assistance [in-cluding advising on adoption, custody, and permanency planning],school or court advocacy, medical care, support groups, individual andfamily counseling [including bereavement support], parent education,HIV information, respite or child care [especially when the grandpar-ents are sick or hospitalized], transportation that can include both the el-ders and their children, medical and support services for the childrenand teens, telephone-based support and information, resources forself-help [directories, manuals], and financial, housing, and food assis-tance (Draimin, 1993; Levine & Stein, 1994; Marx & Solomon, 2000;Minkler & Roe, 1993; Roe, 2000), Access to treatment for substanceuse and chronic mental illness is also necessary for the middle genera-tion in these families (Kelley, Yorker, & Whitley, 1997). Parentinggrandparents may be helped by parenting classes or psycho-educationalpeer groups that focus on problem-solving the difficult parenting issuesthey are now facing with minors who may be very challenged (Hayslip& Kaminski, 2005; Roe, 2000), If these services are not available,mechanisms for creating them need to be considered. Recently technol-ogy has been used to provide support for grandparent caregivers, in-cluding on-line chat rooms, computer labs for resource searchers, websites, and video conferencing (Roe, 2000). Services should be availablefor intergenerational families at risk even if some members areundocumented (Levine & Stein, 1994).

Financial support. Policy makers should consider financially sup-porting caregiving grandparents without forcing them to give up theirfamilial rights to decision making, asking them to choose "sides" in afamily, or setting up a situation where they feel that they are replacingtheir grandchildren's parents. Subsidizing grandparent care is more costeffective than foster care, child homelessness, and other long-term costsof tearing apart families and exposing children to rootlessness, neglect,or abuse (Levine & Stein, 1994; Minkler & Roe, 1993). It would makesense if relatives caring for bereaved children got the same payment asnon-relatives, since the financial burden of raising a child does not dif-fer based on how the caregiving adult is or is not related (Kelley,Yorker, & Whitley, 1997). Financial supports should be equitableacross types of caregivers [foster parents, legal guardians, adoptive par-ents] whether they are non-kin or kin (Geballe, Gruendel, & Andiman,

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1995). Financial benefits for grandparent caregivers who adopt may en-courage adoption ofthe grandchildren, providing more security in theirlegal relationship and a greater opportunity to engage in permanencyplanning for the children (Boyer & Poindexter, 2005), Mullen (2000)recommends a separate application process for grandparents so thatthey get the option of "child-only" assistance, that TANF becomes au-tomatically linked to Medicaid, that everyone is screened for Medicaideligibility even if they do not qualify for TANF, and that outreach ef-forts are made to recruit and educate grandparent caregivers about pub-lic benefits. Geballe, Gruendel, and Andiman (1995) call for the supportof a wide range of custody and caregiving arrangements; financial sub-sidies for the transition period when grandparent caregivers are first tak-ing on child rearing; subsidized legal services to help with custody,permanency planning, and benefits advocacy; and extending HIVservices to the HIV-affected child's second family as well as to theoriginal family.

Legislative responses. Making decisions about pursuing various op-tions is problematic. On one hand, legal recognition can facilitategrandparents obtaining relevant financial, medical, social, and educa-tional services for the children in their care. Schools, hospitals, courts,and agencies may insist on proof of legal standing (Karp, 1996;Perez-Porter & Flint, 2000). On the other hand, sometimes legal formsof parenting, such as custody, guardianship, foster care, and adoption,complicate relationships between the grandparent and parent, createhostile family environments, or involve complex, time-consuming, andcostly legal proceedings that many caregivers are unequipped to handle(Karp, 1996). An alternative would be legislation that grants access toservices through simple signed documentation or affidavit stating therelationship between the caregiver and the child (Karp, 1996).

CONCLUSION

If we expect older family members to continue to raise the children ofpersons absent due to HIV, we must support them. They need help rais-ing a new generation of traumatized children and teens. It is importantthat we recognize the vital role that grandparent caregivers serve in oursociety without ignoring their needs for support or assuming that grand-parents have a duty to care for grandchildren-a duty to care for free andwithout help (Minkler & Roe, 1993). Grandfamilies are quite vulnera-ble, and our policies need to support rather than punish them. Grandpar-

Policy 91

ents are stressed themselves and are raising some ofthe most vulnerableand stressed children in our society (Roe & Minkler, 1998/1999). Thefact that grandparents step in to keep the family together is evidence oftremendous resilience and solidarity. It is a major strength that family isdefined in an expansive and inclusive way; however, they deserve morehelp (Roe & Minkler, 1998/1999),

The phenomenon of grandparent caregiving is a woman's issue, a so-cial justice issue, and a human rights issue. Because most parentingolder relatives are women, sexism is a salient factor, as society expectswomen to take care of family crises without recognition or compensa-tion. When the families are poor or of color, classism and racism aremajor forces in their lives. When aging and HIV occur together, there isa hybrid of ageism and HIV stigma. The challenges faced by HIV-af-fected grandparents cannot be separated from other needs in society: theneed for drug treatment rather than arrest and jailing for the addictedparents; the need for access to antiretrovirals to improve life of theHIV-infected parents, the need for all service systems to be prepared todeal with HIV in a non-punitive way, the need for adequate funding andmonitoring of programs for appropriateness and effectiveness, and theneed to address racism, classism, sexism, addiction, and poverty incomprehensive ways.

There is not yet a cure or vaccine for HIV, there are more people liv-ing with HIV than ever before, and it is not clear how long the currentmedical therapies will work. HIV is not going away soon and it islikely that parents with end-stage HIV will continue to ask their olderparents to take on child rearing functions. The confluence of threechallenging situations-growing older and frailer, parenting again, andmanaging the complexity of HIV disease-create an especially worry-ing circumstance. HIV-affected older caregivers are difficult to no-tice, because of HIV stigma, their neglect of their needs, and thedemands of caregiving. Their invisibility is also partially due to the in-ability or unwillingness of policy makers and practitioners to seethem. Practitioners and managers must challenge themselves to ex-pand their notice, knowledge, and interventions. Whether advocatesand practitioners are in the mental health, health, child welfare, geron-tological, or HIV fields, they should anticipate that individuals andfamilies may be affected by HIV but not disclosing due to stigma, soservice recipients should be invited, in a context of safety and confi-dentiality, to speak freely about HIV concerns. Although there hasbeen much progress made, the HIV network has not yet adequately ad-dressed ageism, the aging network has not yet adequately addressed

92 JOURNAL OF INTERGENERATIONAL RELATIONSHIPS

HIV phobia, and the child welfare system has not figured out how toaddress HIV-affected grandfamilies. The aging, child welfare, andHIV systems of care could and should intersect more effectively andefficiently.

NOTES

1. "HIV" refers to Human Immunodeficiency Virus, the cause of HIV disease, theend stage of which is often called "AIDS." HIV-affected refers to those who are closelyassociated with adults or children who are living with HIV illness; those living withHIV are called "HIV-infected."

2. When I refer to parenting grandparents, I am broadly referring to all caregivingolder relatives, including step grandparents and older family members with no fonnallegal or biological ties to the child, who have taken on responsibilities of parentingthose children. "Family" refers not only to legal or biological bonds, but to connectionsof choice. Households where the major caregiver and decision maker is an older rela-tive are sometimes referred to as "grandfamilies."

3. The HIV caregiving situation in other parts of the globe is beyond the scope ofthis article.

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Submitted: 06/12/06Revised: 11/29/06ccepted: 03/19/07

doi:10.1300/J194v05n04 06

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