Custodial Grandfamilies - Carolyn Case
There is growing concern that the stresses of custodial caregiving may take a health toll on grandparents (6). Studies have shown that grandparents raising grandchildren are at elevated risk for chronic conditions such as hypertension, obesity, coronary heart disease, and mobility problems (7). High levels of perceived stress are believed to contribute to the decline in health. Family caregiver depression has been shown to cause immunosuppression (Minkler), and the caregiver may change his or her behavior in subtle ways, eventually culminating in declining health (8). Those who quit work to care for children may suffer from a loss of identity and financial strain which is a major stressor for custodial grandparents (9,10,4). They may experience a sense of interrupted life stages (3), exhaustion, grief, humiliation or shame (11), guilt (6), or isolation (12), sometimes due to stigmatization over the situation that led to the child’s separation from the biological parent (13).
This is a public health (PH) concern at individual, family, social, and institutional levels. The grandparent exchanges his or her role for that of parent, and the bonds between grandparent and grandchild generally strengthen with time spent in the grandfamily until, psychologically, the child thinks of the caregiver as a parent. This stable, “parent-child” relationship is conducive to the child’s healthy personality development (1). Inglehard reported that children living in kinship families generally have less mental health problems and delinquent behaviors, and higher developmental scores and functioning levels than those in foster care or group homes (14). Often, grandparents take the child as a means of last resort; otherwise, the child would go to foster homes (8). Yet, these grandparents receive less in government benefits or assistance than do either the biological parents or the foster parents. If the grandparent becomes too ill to provide care, the child may be placed into the foster care system, or return to conditions where they are subjected to abuse or neglect, either of which would impact negatively on the child’s health and development (8). This would pose a much greater burden on society, both in terms of foster care and grandparent healthcare (3,6).
A longitudinal study by Baker and Silverstein revealed that grandmothers who had recently started raising grandchildren were less likely to engage in preventative behavior such as receiving flu vaccines, Pap tests and cholesterol screening. However, once those same grandmothers been caregiving for more than two years, they were significantly more likely to perform these behaviors than non-caregivers, and more apt to do so than before they had begun caregiving (8). Time pressures, emotional upheaval, and fatigue may lead to perceived stress and overload (6). This suggests that during the 1st few years of caregiving, grandparents are too overwhelmed by the pressures of parenting to take care of their own health, but that once they adapt to their new roles, their behavior reflects a more proactive approach to health, perhaps to assure that they can continue to care for grandchildren (8). This is corroborated by Minkler et al, who found that grandparents who had recently begun custodial caregiving were more likely to suffer clinical depression (10).
One common intervention is to offer these grandmothers encouragement to undergo screening, positive role models and information on preventive measures available through grandfamily support groups. These interventions are based on a combination of the Health Belief Model (HBM) and the Theory of Planner Behavior (TPB), both very commonly employed in the field of PH. While the HBM is sometimes useful for encouraging simple prevention strategies such as the mammogram, and the TPB’s use of social norms would encourage women to engage in preventative behaviors (15), this approach is flawed for a number of reasons, the most important being that these are individual health behavior theories and do not take into account the person’s environment and life situation. The HBM assumes that intention to perform a health behavior will necessarily lead to its performance, while the TPB assumes that a person will follow those behaviors endorsed by her peer group. They do not address the overwhelming demands often faced by grandparents caught up in establishing a grandfamily.
But this is only the tip of the iceberg, one problem symptomatic of a plethora of PH issues embedded in a flawed system. There do appear to be some strong local programs that address the health needs of custodial grandparents. One such program is Project Healthy Grandparents (PHG), a community service research project of the College of Health and Human Sciences at Georgia State University which offers grandfamilies social and health services, support groups, and legal assistance referrals, and helps grandparents access community resources. However, such programs are few and far between, and are often sort-lived, and there have been few studies to evaluate their efficacy (10). Moreover, they usually address health issues on an individual, family, or peer group level, rather than grappling with the social conditions which are the root of many grandfamilies’ health issues- the underlying risk factors, such as socioeconomic status (SES), which puts people “at risk of risk” (16). Without addressing the fundamental causes of disease including lack of access to general resources such as knowledge, money, power, prestige and social connections, these programs will only achieve limited success (16).
Nationwide, the general PH approach to the health issues of the grandfamily, especially those classified as informal kinship households, is one of benign neglect. It will take sweeping societal measures, such as those outlined in the Theory of Social Ecology (TSE), to fully address GF health issues. We will look at some applications of this theory in Solutions, below.
. In the absence of any comprehensive PH approach to health issues of custodial grandparents, we will briefly consider the existing government response to the needs of the kinship family, as articulated in the Fostering Connections to Success and Increasing Adoptions Act (FCSIAA) of 2008. Note that this does not even begin to address issues of informal kinship family structures. This offers a look at the government approach on paper, but not necessarily the everyday realities, which we will then consider.
Because we are thinking in terms of a widespread PH program, marketing theory principles require us to involve the primary stakeholders (17). To do this, we have included the ideas of a group of custodial grandparents who have volunteered to share their experiences and thoughts, and whose identities are withheld to protect their anonymity. The one exception is Pat Owens, custodial grandparent and Co-founder and President of Grandfamilies of America, a national organization dedicated to helping grandparent/kin caregivers.
Most assistance to children in the child welfare system, which includes foster children, falls under individual state jurisdiction. The FCSIAA mission is to address challenges facing children and families in this system, including children about to, or who have already entered the foster care system. This act allows (but does not require) states to claim federal funds to provide assistance for children to exit foster care and live permanently with relatives who are their legal guardians (in formal kinship families). Under this act, The Kinship Navigator Program (KNP) helps link the kinship family to services and supports. This requires states to notify relatives when children are removed from parental custody, giving them an opportunity to assume their upbringing (18). The KNP educates kinship caregivers about resources and supports; refers caregivers to appropriate services, helps establish a community collaboration focused on kinship services, and advocates for services and resources for caregivers (19). However, not all areas offer the KNP: even where available, funding for a national program having such a broad mandate is low ($5 million/year), and allocated only from 2009 until 2013 (New Help for Children)- hardly time to implement and field test a program.
As of October, 2010, those states having federal adoption assistance programs will be able to claim federal funds for more children with special needs. There will be a gradual period of enrollment, with all children having special needs slated to be covered by 2018 (18). This does not pertain to all states, although because a large percent of children in grandfamilies come from a home where there has been drug and alcohol abuse, child abuse, neglect, abandonment, poverty, mental illness, incarceration, or death of a parent, many children suffer from depression, fetal alcohol spectrum disorders (FASD), developmental delays, ADHD or learning disabilities (2). A number of grandparents reported high levels of perceived stress resulting form caring for grandchildren with disabilities, and that some children were denied insurance coverage for these needs (9). This is corroborated by Minkler, who concluded that caregiving for children with special needs has been shown to be a source of high levels of grandparent stress.
Under the FCSIAA, states have the option to use federal Title IV-E funds for guardianship payments for children cared for by relative guardians (18). Grandfamilies of America has been working to make this mandatory (1), but at present, states must opt to participate in the program, and provide the dollars to match federal assistances. The nature of assistance varies significantly by state. Presently, 37 states and the District of Columbia participate (18). With such a piecemeal system, there are wide national inequities in assistance for kinship families.
This is just a sampling. While there are many promising programs on the books, they are often unavailable to families with the most need; the public will to provide the funding just isn’t there, in part because, despite its huge numbers, this population remains largely invisible.
Invisibility adds to the sense of isolation expressed by grandparent informants (9), and found in the literature (12). Fear of gender-based or family violence may play a part; one grandparent related that the biological father had inflicted death threats and physical violence on the biological mother at school in an effort to pressure her to terminate the pregnancy, and had attacked the grandparent at home. The Theory of Gender and Power (TGB) is applicable in this situation, whereby social mechanisms such as control over relationships maintain the sexual division of power, and promote gender-based violence (20).
Grandfamily members themselves do not wish their most personal family matters to be made public. Almost all informants reported some social stigmatization directed at themselves or family members. One grandparent described the social stigma the biologicl mother, a teenager, faces daily in school, as not emanating from her peers, but from their parents- an artifact of the 1960’s carried over one generation: “It’s a social phenomenon. I don’t know how to get around it” (9). Again, the TGP helps inform our understanding of institutionalized social norms which maintain people’s biases. These biases create taboos about female sexuality, such as those condemning a teenage girl for having premarital sex (20). Other grandparents reported their young grandchildren being stigmatized in playgroups or school (9). Again, this may be partially due to parental prejudices, especially regarding playgroups, which are generally organized by parents. A qualitative study conducted at UCLA indicates that some children are ashamed to be known as living in kinship care, and often fabricate stories about their family life (14).
Still other grandparents reported feeling as if they were often overlooked while performing daily parenting tasks, due to a sense of disruption in life stages. For example, one grandmother told of being ignored by the first-grade mothers at PTA meetings, who saw her as an “antique” (9).
Ageism is another cause of grandfamily invisibility. The largest percentage of kinship caregivers are seniors (2). A society that fetishizes youth is wont to dismiss the value of its older citizens, institutionalizing their disempowerment in the courts and government agencies. As a result, government agencies are not responsive to the grandfamily structure. Taste-based theories of discrimination help us to understand this phenomenon as illustrated in an article by Leavitt: Contestant voting behavior on the television game show Weakest Link, in which contestants voted against older team members irregardless of their performance, provides evidence that while present social norms may inhibit on-camera expressions of discrimination against women and people of African descent, no such norms inhibit the expression of ageism. Across the board, contestants voted seniors off their teams, apparently because they did not want older people around: “...other players treat them with animus” (21).
These attitudes compound grandparents’ sense of ostracism and isolation (1), and may actually exacerbate their health decline. For example, Slade reported findings associating internalized negative age stereotypes with accelerated declines in hearing thresholds over a 3-year period. This study suggests that age-stereotypes have more impact on hearing loss than smoking and depression (22).
Stereotypes are reflected in the attitude of the courts toward grandfamilies, due not only to ageism, but often due to their lack of legal status. Grandparents are often not allowed to speak in court, and so are left out of the decision- making process for grandchild custody (9). When grandparents do appear in court, guardians ad litem (GAL) (court-appointed representatives for the child in legal proceedings), and county staff do not always understand their role as caregivers, and at times treat them with hostility (2).
Grandparents report that antiquated, 1950’s stereotypes of the “typical” American family with the mother father and children living in a discrete household prevail in the courts. (9). This is instrumental in making decisions on what the courts deem to be in the “child’s best interest.” Yet, grandparents report that many grandchildren are returned to negligent and abusive parents because a court mandate for mother-child reunifications without due consideration paid to the child’s or extended family’s best interests (9). Laws regulating child custody were largely created for divorce cases, where decisions are based on the child’s relationship with each parent. This is not true of kinship custody cases, where decisions must be based on the child’s need for a stable, loving family (2). Modifications of the legal system to make it more responsive to kinship issues and alternative family structures will require changes at the institutional level, including those in legislation.
While the growing phenomenon of the grandfamily cuts across ethnicities, SES levels, and geographic locations, a nationwide survey found that a disproportionately high percentage of custodial grandparents were Black or Hispanic, and that they experienced higher than average levels of depression and chronic conditions (8). Their generally low socioeconomic status (SES) and the circumstances that led to the formation of the grandfamily predispose them to more health problems, even before assuming custody of the grandchild (6). Pinquart and Sörenson propose the “double-jeopardy hypothesis:” that minority caregivers are subjected to higher levels of stress because they are at greater risk of poor health due to the cumulative effects of economic disadvantage and discrimination. They suggest that the different levels of stress occurring among ethnic groups are responsible for ethnic differences in caregiver health (23). This relates to Cozier’s findings that lifetime racism was associated with weight gain in Black women (24). Restricted access to quality healthcare and lower levels of insurance coverage contribute to poorer health outcomes for ethnic minorities (23). It does not appear that caregiving per se is causal to grandparent health declines. A 2007 meta-analysis by Hughes et al suggests the strong influence of SES and pre existing caregiver conditions and behaviors, such as smoking (6). Once socioeconomic status and demographic traits are controlled, custodial grandparents’ health does not decline, as compared to non-caregivers (8). Some grandparents interviewed related that they had suffered from autoimmune illness, depression, exhaustion and digestive disorders; some family members also suffered from anxiety disorders (9). However, this report cannot speculate whether caregiving stress has been a factor in any of these conditions.
Custody issues are one of the major sources of custodial grandparents’ stress. In her years mentoring custodial grandparents, Pat Owens has seen that most hesitate to pursue formal custody, generally because they expect the situation to be temporary, and wish to avoid a custody battle with their own children. However, a “revolving door” situation often develops, in which the biological parent sporadically comes and goes in the child’s life, resulting in much distress. In order to provide more safety and security for the child, grandparents formalize custody (1). Legal guardianship/permanent custody may be obtained through the family, juvenile, probate, tribal, or other courts (18). Conflicts over custody were one of the major sources of stress for informants (9). Grandparents must prove that their children are unfit or negligent parents, and if they lose their bid for custody, could also lose any say in raising their grandchild, who may be returned to an abusive parent or placed in foster care (10). Informants have had to sell their homes, uproot to a new area, take on second mortgages, and devote their entire incomes to meet the crushing cost of custody battles (9).
Yet, without formal status, the grandfamily remains largely outside the system. Grandfamilies of America Vice-President Sharon Olsen summarizes the Catch-22 situation: “This informal system has no bureaucracy, few statutes, and only a handful of attorneys, and foster caregivers continually find themselves at odds with (and not supported by) the system set up to help the children-the foster care system”(2). One grandmother summed it up: “We [grandparents] have no rights” (9).
Unfortunately, many programs to which custodial grandparents must appeal for resources do not truly meet their families’ needs, partly because the interventions are probably well-intended, but ill-informed. Often, custodial grandparents, especially those in informal family arrangements, are not involved in the design and implementation of interventions. Pat Owens emphasizes that only a person who has experienced being pitted between the needs or demands of one’s own child and grandchildren can truly understand the issues. When grandparents attend programs targeting grandfamilies, but designed by people who are not custodial grandparents, they often state afterwards, “They don’t understand us” (1)
Solutions
In seeking solutions, the importance of involving the experts- grandparent caregivers- in every aspect of program development cannot be overemphasized.
The public health issues faced by custodial grandparents can only be fully addressed through tackling the fundamental causes of their distress at the institutional level, along with helping them to meet their more immediate, daily needs on personal, family and social levels. For this, we apply the Theory of Social Ecology (TSE), which recognizes the interaction between the person and the environment, and considers the many influences on behavior in a series of ever-more encompassing levels. The TSE has 3 advantages over individual theory: It does not blame the victim for failure to change;
It considers influences ranging in scope from individual to environmental factors as possible explanations for unhealthy behaviors; and it allows the use of environmental approaches to prevention (25). Appropriate changes in 5 levels are needed for sustainable health behavior change to occur:
1. Intrapersonal factors: Attitudes, self-concept, skills, developmental history
2. Interpersonal factors: Relationships w/family, peer networks, workplace
3. Institutional factors: Social institutions and their management styles, work schedules, and economic and social resources
4. Community factors- primary social groups, neighborhoods, friendship networks
5. Public policy- local, state, national laws and regulations affecting individual health. (25).
Since almost all existing programs offer interventions addressing intrapersonal and interpersonal factors (TSE levels 1-2 ), we will begin by discussing some possible solutions aimed at level 3, Institutional factors: Difficulties in dealing with the social institutions set up to help foster children is a major source of frustration for the custodial grandparent, exacerbated by lack of communication. Grandparents often are not informed of their rights or entitlements, and when they do gather the information, the system makes it difficult to get the help they need when they need it (9). For example, most federal assistance is “back end,” or Title IV-E (2), and can only be accessed after the child has been legally taken from the biological parents.
Priorities of those Grandparents involved with Grandfamilies of America generally follow Maslow’s hierarchy of needs (26), with financial assistance to meet basic survival needs taking precedence, followed by support and social services, such as mental health and healthcare (2). Most grandparents interviewed reported experiencing some levels of financial stress, caused by nearly insurmountable court expenses, the expenses of raising children, or having to give up their jobs to do childcare, which often caused them a painful loss of identity. To several grandmothers, the idea that they would probably never be able to work outside of the home again came as a crushing blow (9). Others have had to sell their homes, relocate to another part of the country to comply with laws governing formal custody, and/or take on second mortgages (9), while still others hold several jobs, only to see their incomes go to legal fees (9). Aside from survival assistance such as food stamps and WIC, programs to make seed grants and micro-loans available to the custodial grandparent, as well as volunteer consultants, such as those offered by the Office of Small Business Development Centers (SBDC), to help set up cottage businesses or local co-ops would help grandfamilies sustain a healthful standard of living. Additionally, there is a need for subdivisions of subsidized housing for the elderly which allows grandchildren.
A “front end” approach is needed to support informal kinship caregivers and prevent children from having to leave the extended family and enter the foster care system (2). Grandparents suggest that immediately upon learning that the grandparents have informal custody of the child, the Department of Health and Human Services (HHS) should quickly supply information about available assistance and resources. This should be done not only serve the best interest of the child, but: “... because you’re .... going to save them money in the long run, in foster care. You should get more support than you do, and I didn’t find that at all. ... they call it a ‘Granny Grant,’ and most of the grandparents don’t even know what it is” (9).
Other grandparents suggested that an advocate be made available to help grandparents navigate this complex inter-agency patchwork social programs(9), and that agencies, which were often established at different times and have very different mandates and conflicting requirements (10), modify their policies to maximize inter-agency communication (9).
Community- level programs should be directed at the general community and the community of kinship families. Here, local and mass-media campaigns would be extremely helpful to normalize the presence of the kinship family. Role model stories depicting young people in grandfamilies involved in exciting, “cool” pursuits may help to ease the sense of shame some children feel about their family structure, and to eradicate stereotypes and stigma. These can be essentially cost-free via forums such as Youtube. Such an intervention aimed at youth should involve young people in kinship and grandfamilies from its inception in order to design the frame as they see most helpful. The campaign must also be designed to spark long-term, sustained programs in the wake of the excitement of the initial campaign. At the same time, community efforts should reach out to form coalitions with agencies addressing the very issues that cause the breakup of the child’s biological family-including substance abuse, HIV/AIDS, mental illness, family and gender-based violence (10), thus forming a more united front to effect social and legislative change.
At the public policy level, interventions are needed to target structural issues of ageism and racial inequality that trap minorities and the elderly in positions of powerlessness and poverty. Custodial grandparents can learn to become powerful advocates, testifying at public hearings, in Congress, and at conferences and professional meetings (10). Grandparents told of their appearances before the state legislature to petition for grandparents’ rights in family or probate courts so that the best interests of the child are truly addressed (9). Others are challenging outdated laws regulating HHS, agitating to make it more responsive to a spectrum of family structures, including the grandfamily, informal kinship family and other forms of extended family (9). Grandfamilies of America advocates for a national government program specifically designed to support and assist informal caregivers, as well as changes in the legal system. Their VP Sharon Olsen states: “Any action by [the nation’s courts] to acknowledge and support kinship caregivers and the children in their care will improve the lives of the countless children and caregivers and strengthen families” (2).
My sincere thanks go to the agencies Kids Kin, People Plus, and Grandparents of America, which gave me background information and helped me to contact custodial grandparents. I want to especially thank the grandparents, biological parents, and grandchildren who so graciously shared their knowledge, insights, experiences, homes, tears and laughter with me. You have asked me to make this paper available to you, and I hope you will find that it was worth your time and energies, and that it will contribute to efforts to improve the wellbeing of your families. You may be anonymous in this paper, but “you know who you are”- and you’re terrific!
Works Cited
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[1] A formal kinship household is one in which the child has been separated from its biological parents by the state, which retains legal control over the child’s placement (2).
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