GRANDPARENTS RAISING GRANDCHILDREN WITH DEVELOPMENTAL DISABILITIES
Families have been the primary caregivers of children and adults with developmental disabilities, with over 60% living with families. At least one quarter of these family caregivers are over the age of 60 years (Fujiura, 1998). Increasingly these caregivers are grandparents who are caring for their grandchildren with disabilities.
This article examines 1) their demographics; 2) reasons for assuming this role; 3) their needs, concerns, and challenges; and 4) supportive networks. Additionally, it reviews supportive interventions for this population and implications for the aging network in designing and coordinating services as part of the National Family Caregiver Support Program.
Grandparents raising grandchildren with developmental disabilities have been a largely forgotten part of America’s caregiver population. Yet, they likely comprise a large percentage of the grandparents raising grandchildren, as disability is more prevalent in families living in poverty, and in single parent households (Fujiura, 1998). Other factors associated with increased prevalence of disabilities are substance abuse and neglect, which contribute to grandparents taking over the caregiving role.
Grandparenting a child with disabilities includes challenges above and beyond those of other grandparents. Findings from the literature on grandparents not residing with their grandchild with disabilities, have indicated feelings of stress, depression and ambiguity concerning their roles as grandparents (Johnson, 1983; Mosala & Ikonen Mosala, 1985; Murphy & Della Corte, 1990, Vadasy et al., 1986).
Research on mothers of children with disabilities has shown that having a child with a developmental disability does present more challenges, including emotional strain, financial hardships, career disruption, social isolation, and worry about the child’s future. The literature also shows that many mothers cope well over the long-term as they become accustomed to the role (Seltzer & Kraus, 1994).
However, it is not clear how grandparents who have not had life-long caregiving responsibility for the child cope with these caregiving demands. Janicki, McCallion, Grant-Griffin, & Kolomer’s (2000) study found that most grandparents caring for grandchildren with developmental disabilities felt overwhelmed by the caregiving challenges. As with other grandparents in these roles they reported high rates of depression (57%). However, these grandparents also had to meet the demands of parenting a grandchild with complex behavioral or physical conditions. The impact on their lives included never being able to leave their grandchild alone or with someone else, experiencing less sleep, having physical challenges, and being physically assaulted. They reported a need for more supports and frustration with accessing services because of unclear guardianship and legal situations. A constant worry was a concern about maintaining caregiving as they aged and faced age-related health declines.
Grandparents caring for grandchildren with disabilities have the challenges faced by other grandparents raising grandchildren, including difficulties in finding adequate housing, health care, and educational supports.
However, they have additional challenges, such as finding housing that is accessible to persons with a disability. Also, children with developmental disabilities living with grandparents may be ineligible for an individual education plan. Though they have more contact with human service agencies than these other grandparent caregivers, these grandparents are generally low users of services (Force et al., 2000). Often, these grandparents lack information about such services, even though they and their grandchildren may be eligible for them. This low contact does raise concern about the extent to which any planning occurs regarding the future needs of these grandchildren as they age out of the school system and as their grandparents can no longer maintain caregiving due to their frailty or death. Often grandparents caring for grandchildren with developmental disabilities have faced unresponsive service systems. Some of the difficulties include having to wait for long periods of time, lack of sufficient transportation to agency offices, and insufficient access to needed documentation (McCallion et al., 2000). An additional problem for these caregivers is the frustration of dealing with the fragmented service system.
There is little research on supportive interventions and programs specifically designed to meet the needs of grandparent caregivers of grandchildren with disabilities. Several psycho-education and support group programs have focused on grandparents who provide care but are not necessarily the primary caregivers (George, 1998; Vadasy et al., 1986). One comprehensive program specifically targeting the needs of grandparents caring for a child with developmental disabilities (McCallion et al., 2000) had the following components: (a) grandparent support group, (b) consumer-developed manual of locally based services, (c) peer support from other grandparents, and (d) active case management from the participating agencies. This intervention was successful in significantly reducing symptoms of depression and increasing grandparents’ sense of empowerment and caregiving mastery.
Demographic trends indicate a growing increase in grandparent headed families in every socioeconomic and ethnic group across America, the majority living in southern and in non-metropolitan areas (US Bureau of Census, 1998). The percentage of children living in grandparent headed families with or without parents has increased from 3.2 % in 1970 to 5.6 % in 1997. More than one in ten grandparents has raised a grandchild for at least six months and most of these grandchildren are less than 6 years old (Fuller-Thomson, Minkler & Driver, 1997; US Bureau of Census, 1998). Furthermore, 56% of custodial grandparents have provided care to a grandchild for at least 3 years and one in five custodial grandparents has taken care of their grandchild for more than 10 years.
About 1.7 million (43.6 %) of these children are living in non-Hispanic white grandparent maintained families as compared to 1.4 million (35.9%) and 0.7 million (18%) of all children living in non-Hispanic African-American grandparent families and Hispanic grandparent maintained families respectively. Additionally, 8.3% of all grandparents (26 % of African-American grandmothers and 7.3 % of white grandmothers) live in households with their grandchildren (Szinovacz, 1998).
Nationally, slightly more than half of the grandparent caregivers are married (54 percent), more than three-quarters are women (77 percent) and 62 percent are non-Hispanic white. Being single, living in poverty, and being African-American substantially increases the odds of becoming a caregiver for one’s grandchildren (Casper & Bryson, 1998; Chalfie, 1994; Fuller Thomson et’ al, 1997; Harden, Clark & Maguire, 1997).
Grandparents raising grandchildren with developmental disabilities have been a largely forgotten part of America’s caregiver population.
Developmental disabilities is defined as a condition that is:
With improved medical care, dramatically increased life expectancy, and their growing presence in the community, this population should demand increased attention. Furthermore, developmental and other disabilities occur more frequently among families living in poverty and in single parent household (Fujiura, 1998). Other factors associated with increased prevalence of disabilities are substance abuse and neglect, which contribute to grandparents taking over the caregiving role. Hence, one would expect a high prevalence of disabilities among families headed by grandparent caregiviers (Force, Botsford, Pisano, & Holbert, 2000).
Several studies have reported that grandchildren in grandparent headed households have high rates of asthma and other respiratory problems, weakened immune systems, physical disabilities, poor eating and sleeping patterns, and attention deficit disorders (Dowdell, 1995; Shore & Hayslip, 1994). Force and his colleagues report that up to 75% of families contacting the Grandparent Resource Center in New York City during a nine-month period were reported to have problems caring for a child with developmental disabilities. Yet, there has been little attention on this group of caregivers. One explanation for this neglect is that these grandparents are often viewed as an extension of foster care providers like siblings rather than as a unique group of caregivers (Kolomer, 2000). In addition, the scant literature available is over-represented by grandparents of multicultural and inner city communities (McCallion, Janicki, Grant-Griffin, & Kolomer, 2000).
REASONS FOR BEING A CAREGIVER
Numerous studies looking into the reasons for grandparents assuming custodial care have reported that child maltreatment typically associated with substance abuse by either one or both parents as the primary reason for assuming custodial care (Dowdell, 1995; Jendrek, 1994; Pruchno, 1999). Other reasons for grandparents raising grandchildren include parental death (Pruchno, 1999; Schable et al., 1995) incarceration (Dowdell, 1995; Dressel & Barnhill, 1994; Gaudin & Sutphen, 1993; Kelley, 1993; Pruchno, 1999), mental illness (Dowdell, 1995; Kelley, 1993), and abandonment (Pruchno, 1999). The HIV/AIDS epidemic, a leading cause of death among the African-American population between the ages of 25-44 years, has contributed to an increase in grandparent caregiving among African-American children (Joslin & Harrison, 1998). Tied to the above factors is the impact of poverty, which is a vulnerability factor for both grandparent caregiving and for the prevalence of disability in the family.
There are very few empirical studies that have looked into the reasons for grandparents assuming the role of caregiver for grandchildren with developmental disabilities. In a study that involved 164 grandparents (80% African-American) in New York City, Janicki, McCallion, Grant-Griffin, & Kolomer (2000) found that substance abuse by the child’s parent was the primary reason for grandparents taking the caregiver role, with preventing foster care placement as the second most prevalent reason. Other factors such as incarceration of the child’s parents, parental death, and parents moving away also influenced the decision for grandparents to assume the caregiver role. A majority of the grandparents reported that they would continue to provide care as long as their health permitted them.
CONCERNS AND CHALLENGES OF GRANDPARENTING
Studies in the gerontology literature have documented some of the responsibilities of grandmothers when they assume the role of primary caregiver for their grandchild, including being the primary contact person in case of an emergency, signing reports cards, setting the rules, disciplining grandchildren, and attending parent teacher meetings and other school events (Pruchno, 1999). Studies of the long-term impact of caregiving by grandparents report high rates of depression, poor self rated health and/or frequent presence of chronic health problems especially among grandmothers (Burton, 1992; Dowdell, 1995; Minkler & Roe, 1993; Minkler, Driver, Roe, & Bedeian, 1997). Close to a third of grandmother caregivers suffer from depression and over half have at least one limitation in activities of daily living (Fuller-Thomson & Minkler, 2000). Grandparent caregivers attribute stress to decisions on long-term and permanent child care responsibilities, caregiver’s physical ability to keep up with the school, social and physical activities of their grandchild and presence of behavior problems of their grandchild (Burton, 1992; Pruchno, 1999).
Grandparent caregivers are 60% more likely to live in poverty than grandparents not raising grandchildren (Fuller-Thompson et al., 1997) with grandmother headed households being the most impoverished. The research indicates that two thirds of children living in grandmother only headed households are living in poverty (Casper & Byron, 1998). In a study by Burton (1992) over 78 % of grandparent caregivers reported facing financial hardships while 52% reported not having the resources to meet the needs arising out of caregiving. In addition, grandparents have indicated having to quit their jobs and experiencing a decline in privacy and in time for themselves, for their spouse, and for social-recreational activities after taking on the primary caregiving role for their grandchildren (Burton, 1992; Jendrek, 1993; Minkler & Roe, 1993). Although caregiver grandparents also report positive experiences (Burton, 1992), the long term consequences of caregiving are overwhelming, with grandparents reporting lower well being scores, lesser satisfaction with grandparent roles and poorer perception of grandparent-grandchild relationships as compared to non-caregiver grandparents (Minkler & Roe, 1993; Shore & Hayslip, 1994).
Poor health and the high level of caregiving need of the grandchild also contribute to higher depression and stress (Burton, 1992).
Grandparenting a child with disabilities includes challenges above and beyond those of other grandparents who have taken the role of primary caregiver for their grandchild. Although caregiving for a grandchild with developmental disabilities is likely to be more demanding than caring for other children, there has been little research examining the long-term effects of the grandchild’s disability on caregiver grandparents. Findings from the literature on grandparents not residing with their grandchild with disabilities, have indicated feelings of stress, depression and ambiguity concerning their roles as grandparents (Johnson, 1983; Mosala & Ikonen Mosala, 1985; Murphy & Della Corte, 1990, Vadasy, Fewell & Meyer, 1986). In Scherman, Gardner, Brown, and Schutter’s (1995) study, grandparents of children with spina bifida expressed concerns about their grandchild’s medical condition and their ability to live independently and foster meaningful relationships. In addition, they worried about their future care placements, inadequate financial resources, and the effects of the disabled grandchild on other grandchildren.
Research on mothers of children with disabilities has shown that having a child with a developmental disability does present more challenges, including emotional strain, financial hardships, career disruption, social isolation, and worry about the child’s future. The literature also shows that many mothers cope well over the long-term as they become accustomed to the role (Seltzer & Krauss, 1994). However, it is not clear how grandparents who have not had a life-long caregiving responsibility for the child cope with the caregiving demands of a child with a disability.
There is little information on the long-term impact of caregiving on the physical and mental status of grandparents caring for a child with developmental disabilities. In a study of grandparent caregivers in New York, Force et al. (2000) found that grandparent caregivers of grandchildren with developmental disabilities showed high rates of depression, but not significantly higher than that of other grandparent caregivers. However, the authors suggested that grandparents tended to underreport physical and mental health symptoms due to fear that the child may be taken away from their custody. In their study of 164 grandparents caring for a child with developmental disabilities in New York, of which nearly all were female (96%) and African-American (80%), Janicki et al. (2000) report that most of these families felt overwhelmed by the caregiving challenges. As with other grandparents in these roles they reported high rates of depression (57%).
However, these grandparents also had to meet the demands of parenting a grandchild with complex behavioral or physical conditions. The impact on their lives included never being able to leave their grandchild alone or with someone else, experiencing less sleep, having physical challenges, and being physically assaulted. They were concerned about the caregiving demands presented by their grandchildren and worried that they would be perceived as inadequate in their roles. As in the previous study, they seemed to mask their day-to-day difficulties and under-report any physical or mental health problems lest they be perceived as incapable of providing support. Furthermore, grandparents reported negative attitudes from their peers regarding their caregiving competencies, adding to their feelings of isolation among their own peers. These families reported a need for more supports and frustration with accessing services because of unclear guardianship and legal situations. They experienced difficulties in accessing public assistance services and were frustrated with the time-consuming appointments. A constant worry was a concern about maintaining caregiving as they aged and faced age-related health declines.
Grandparent-headed families face a number of challenges in obtaining needed health care, financial and public assistance, legal supports, and adequate housing. Analysis of the calls over a nine month period to the 800 hotline of the New York City Department of Aging’s Grandparent Resource Center from grandparents of children with disabilities indicated five major areas of unmet support needs: 1) financial, 2) guardianship, 3) respite care, 4) emotional support, and 5) problems interacting with multiple social service systems, including accessing health care, educational supports and housing (McCallion et al., 2000).
Access to health care is perhaps one of the most important challenges faced by grandparent caregivers. Often these caregivers delay or fail to seek health services for their own health (Minkler & Roe, 1996). Furthermore, many insurance companies disallow their grandchildren as dependents on their policies unless the grandparent has legal custody. One in three children in grandparent headed households were without insurance as compared to one in seven in the overall child population in 1996 (Casper & Bryson, 1998). Physicians in emergency rooms may also be less likely to provide services without a signed legal guardian consent.
As noted earlier, grandparent headed families have high rates of poverty, which is further exacerbated by the costs of caregiving for their grandchildren (Minkler & Roe, 1993). Prior to the welfare reform that occurred in 1996, the Aid to Families Children (AFDC) program was their primary course of financial assistance. The new program, Temporary Assistance to Needy Families (TANF) could negatively impact the caregiver grandparent’s ability to receive benefits for oneself or the child (Mullen & Einhorn, 2000, due to its work requirements, time limits (up to five years) and other restrictions. If the grandparent limits the TANF funds to “child-only”, then some of the work and time limit restrictions are lifted but the funds provided are usually lower than when the funds also include stipends for the caregiver. In 20 states, stipended guardianships are available for relatives who were in the formal foster care system and then exited it. These stipends are higher than the TANF ones but lower than the foster care stipends. However, grandparent caregivers report considerable difficulty in obtaining supports for which they are eligible and experience delay, red tape and other difficulties in trying to access the needed financial assistance (Burnette, 1997; Generation United, 1998). Grandparents caring for grandchildren with developmental disabilities are more likely than other grandparent caregivers to use food stamps and to use child care benefits (Force et al., 2000). However, the unique concerns of grandparents caring for grandchildren with disabilities have rarely been considered in the discussions regarding welfare reform.
Access to adequate and affordable housing is a major concern for many grandparents. For low-income caregivers purchasing or renting housing with sufficient space and safety for themselves and their grandchildren continues to be a major challenge. Grandparents in senior housing or other public housing could face eviction should their grandchildren live with them. Grandparents caring for grandchildren with disabilities have the additional challenges of finding housing that is accessible to persons with a disability. The existing federal, state, and local housing policies have not addressed the special needs of the grandparent caregiver.
Challenging Legal Issues
Grandparent headed households also face challenging legal issues. While legalizing the care arrangement would enable the grandparents to access services and supports for their grandchild, many caregivers are reluctant to do so. Grandparents who enter into formal kinship are eligible for foster care payments, but, the hopes of eventual reunification, fear of antagonizing another family members and the costs involved in legal proceedings often make caregiver grandparents reluctant to formalize custody (Generations United, 2001; Minkler, 1999). Opting for more informal arrangements limits their rights in dealing with school, health and other social service agencies, as proof of legal authority often is a prerequisite for providing services. In Janicki et al’s (2000) study of grandparents caring for grandchildren with developmental disabilities in New York, 37% were court appointed guardians, 20% had temporary court custody, 14% were in kinship foster care, 14% were in informal care, and only 9% were adopted by the grandparent.
School policies are most often geared towards nuclear families, resulting in numerous obstacles for grandparent led families. These obstacles include inability to enroll without proof of legal guardianship, ineligibility for transportation to another school district, and additional fees for out of district enrollment. Children with developmental disabilities living with grandparents may be ineligible for an individual education plan.
In their study comparing grandparents caring for grandchildren with developmental disabilities with those caring for grandchildren without developmental disabilities, Force et al. (2000) found that the families with a disabled grandchild had a greater need for help with schools and a greater need for transportation. They also were more likely to have contacts with the child’s schools, family court, local developmental disabilities services offices, and child welfare agencies. Though they had more contact with human service agencies than other grandparent caregivers, these grandparents were generally low users of services. For example, only 10% had contacts with the developmental disabilities service network and only 7% had contact with the aging network. Often these grandparents lack information about such services, even though they and their grandchildren may be eligible for them. This low contact does raise concern about the extent to which any planning occurs regarding the future needs of these grandchildren as they age out of the school system and as their grandparents can no longer maintain caregiving due to their frailty or death.
Often grandparents caring for grandchildren with developmental disabilities have faced unresponsive service systems. They have reported being denied benefits such as social security-disability and Medicaid even when they fit the criteria for eligibility. Some of the difficulties include having to wait for long periods of time, lack of sufficient transportation to agency offices, and insufficient access to needed documentation (McCallion et al., 2000). An additional problem for these caregivers is the frustration of dealing with the fragmented service system. For example, being a client in one system (e.g., child and family services) sometimes precludes obtaining services from the disability network.
BEST PRACTICES IN SUPPORTIVE INTERVENTIONS
The last two decades have witnessed the growth of a wide array of supportive interventions in response to the increasing number of grandparent caregivers and the challenges faced in these households (Minkler, 1999). These include support groups, phone and internet resources, resource centers, and public policy advocacy groups. The most common form of intervention is support groups, which can vary from informal meetings in grandparents’ homes to a therapeutic support group providing childcare, transportation, and counseling (Minkler, 2001). With the rise of the internet, many families receive support from other families and information from internet sites and chat rooms.
National level resource centers that can provide information and advocacy include the American Association for Retired Persons’ (AARP) Grandparent Information Center and Generations United. The Grandparent Information Centers provide information about services and programs specifically for grandparent-headed households. Generations United is a national membership organization that focuses on promoting intergenerational strategies, programs, and policies. Furthermore, with the inclusion of grandparent headed households in the National Family Caregiver Support Program (NFCSP), many State Units of Aging (SUAs) have mandated that Area Agencies on Aging (AAA’s) allocate a certain percentage of funds for the establishment of grandparent caregiver resource centers . Minkler (2001) reports that collaborative programs of AAA’s and SUA’s offer a wide array of supportive interventions such as creation of grandparent support groups, counseling, resource centers, written guides and newsletters, legal assistance, respite and child focused activities, case management, education and referral services. Funds are used to create interventions programs to assist and support grandparent headed families facing special challenges like grandparents raising children of imprisoned mothers.
One of the most exciting and innovative approaches to meeting the needs of custodial grandparents that is being replicated in eight other cities is the GrandFamilies House in Boston, a 26 unit complex of two, three and four bedroom apartments (Gottlieb & Silverstein, 2000; Kauffman & Goldberg-Glen, 2000). The barrier free complex was created by two local non-profit agencies using both public and private financing. Physical accommodations to aid both toddlers and grandparents, on site programs and a task force to promote advocacy on behalf of grandparent headed households are among the features offered.
There are several national, state, and local coalitions that have formed specifically to advocate for policy changes regarding programs pertaining to grandparent caregivers. Two examples are the Wisconsin National Coalition of Grandparents (NCOG) and the California Grandparents as Parents (GAP). These groups liaison with legislators and the mass media and advocate for new laws or changes in existing laws to help support grandparent caregivers.
There is little research on supportive interventions and programs specifically designed to meet the needs of grandparent caregivers of grandchildren with disabilities. Several programs have focused on grandparents who provide care but are not necessarily the primary caregivers. One of the earliest programs described in the literature is the Supporting Extended Family Members (SEFAM) project in Seattle (Vadasy et al., 1986). The project conducted regular workshops wherein professionals provided information sought by grandparents. Also, the workshops provided a forum for grandparents to share their experiences. George (1988) described a similar program wherein information and support were provided to grandparents. One of the only comprehensive programs specifically targeting the needs of grandparents was implemented in New York with 97 families (McCallion et al., 2000). The project had the following components: (a) grandparent support group, (b) consumer-developed manual of locally based services, (c) peer support from other grandparents, and (d) active case management from the participating agencies. This intervention was successful in significantly reducing symptoms of depression and increasing grandparents’ sense of empowerment and caregiving mastery.
IMPLICATIONS FOR THE AGING NETWORK
With the recent passage of the Older Americans Act amendments of 2000 and the Administration on Aging National Family Caregiver Support Program, there is a recognition of the role of the aging network in supporting grandparents caring for children with intellectual and developmental disabilities. This review of the literature and programs indicated the need for programs targeting this group of grandparent caregivers, who face high caregiving demands and few resources to help them. In order to meet the need of these families, the following are some suggestions for the aging network and for the other networks which need to be involved in the process, including the developmental disabilities, child welfare, health care, and educational systems:
AARP Grandparent Information Center
Relatives as Parents Program (RAPP)
Brookdale Foundation Group
125 East 56th Street
New York, NY 10022
Administration on Aging
GrandparentCaregiver Law Center
National Coalition of Grandparents (NCOG)
Developmental Disabilities Network
The ARC of the United States, Headquarters (ARC)
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
Association of University Centers on Disability (AUCD)
8630 Fenton Street, Suite 410
Silver Spring, MD 20910
National Association of Developmental Disability Councils (NADDC)
1234 Massachusetts Av, NW Suite 103
Washington, DC 20005
American Association on Mental Retardation (AAMR)
444 North Capitol Street, NW Suite 846
Washington, D.C. 20001-1512
202-387-1968 or 800-424-3688
National Association of State Directors of Developmental Disabilities (NASDDDS)
113 Oronoco Street
Alexandria, VA 22314
Centers Specializing in Aging and Developmental Disabilities
Centre on Intellectual Disabilities
Ringel Institute – R1208
State University of New York—Albany
Albany, NY 12222
Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD)
Department of Disability and Human Development, (MC 626)
University of Illinois at Chicago
1640 West Roosevelt Road
Chicago, Illinois 60608-6904
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This paper was partly supported by contract number 282-98-0016, task order number 26, from the Administration on Aging, Department of Health and Human Services, Washington, D.C. 20201. Points of view and considerations expressed in this report are those of the authors and or do not necessarily represent official Administration on Aging policy.
It was also funded by the United States Department of Education, Office of Special Education and Rehabilitation Services, National Institute on Disability and Rehabilitation Research Cooperative Agreement # H133B30069.
This article was originally published by RRTC on Aging with Mental Retardation, Institute on Disability and Human Development. Reprinted with permission.
RRTC on Aging with Mental Retardation
The Rehabilitation Research and Training Center (RRTC) on Aging with Mental Retardation is funded by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education, grant #H133B0069. The opinions in this publication are those of the grantee and do not necessarily reflect those of the U.S. Department of Education.