In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.
As the life expectancy of people with intellectual and developmental disabilities (IDD) has risen compared to previous generations, the age of caregivers has increased. Approximately one-quarter of people with IDD in the United States now live with family caregivers who are over 60 years of age (Fujiura, 1998). As older parents pass away or otherwise become unable to continue as caregivers, responsibility has had to shift elsewhere, and this has increasingly been to adult siblings, known as sibling caregivers (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010). Despite this trend, the adult siblings of people with IDD still receiving care from parents are typically not included in future planning discussions (Heller & Kramer, 2009). This situation is particularly problematic given that a lack of planning increases the risk for crises during transition periods, such as inappropriate emergency placements (Freedman, Krauss, & Seltzer, 1997). Understanding the social and economic characteristics of sibling caregivers and the supports they may need in becoming caregivers is thus of growing importance to safeguarding the well-being of people with IDD, both in general and specifically during care transitions. The need for this inquiry is further driven by the extraordinarily long residential service waiting lists across the United States (Larson, Salmi, Smith, Anderson, & Hewitt, 2011; Nord, D., Kang, Ticha, Hamre, Fay, & Mosely, 2014); moreover, there is little evidence that states are planning for the increased longevity of baby boomers with IDD (Parish & Lutwick, 2005).
The purpose of this study was to add to the understanding of the sibling caregiver population by using a nationally representative sample of the U.S. population taken from the Survey of Income and Program Participation (SIPP). To contextualize this new information, we further sought to compare sibling caregivers to the general population on both sociodemographic variables and levels of financial hardship.
To date, relatively few studies have investigated the characteristics and social circumstances of the adult siblings of people with IDD, regardless of their caregiver status, and they have been almost exclusively limited to small convenience samples (Hodapp, Glidden, & Kaiser, 2005). Still, a handful of subjects related to sibling caregiving has been explored. One question has been whether sibling caregivers tend to be women or men. A review by Seltzer, Greenberg, Orsmond, and Lounds (2005) suggested that women are more likely than men to expect to live with siblings with IDD once their parents can no longer provide care. More recent data yielded similar findings (Burke, Taylor, Urbano, & Hodapp, 2012). When parents were still the primary caregivers, other studies reviewed by Seltzer et al. (2005) found that women tended to be more involved than men in providing emotional support to siblings with IDD. However, it is unclear whether the expectations and care patterns that exist while parents are still involved accurately represent later caregiving behavior. Another study found that the women—but not men—who are siblings of people with IDD delayed marriage and were less likely to have children when compared to the general U.S. population, though they were slightly less likely to divorce (Hodapp, Urbano, & Burke, 2010). Regarding health status, Hodapp and his colleagues (2010) found that siblings self-reported generally good health. However, the study used a convenience sample that resulted in an overrepresentation of white, well-educated respondents. Because only about 10% of siblings become caregivers (Freedman et al., 1997; Seltzer et al., 2005), it is unclear whether these results are representative of siblings who are primary caregivers. Other work has found an increased risk for mental health disorders among the siblings of people with disabilities that include behavioral components and that are disruptive even to well-supported families (Seltzer et al., 2005). Finally, despite concerns raised by qualitative studies about the unmet economic needs of adult siblings generally (Arnold, Heller, & Kramer, 2012) and sibling caregivers specifically (Burke et al., 2015), quantitative data are lacking on sibling caregivers' experiences of material hardships, such as the inability to obtain or use essential resources such as food or medical services due to financial constraints, and participation in public benefit programs designed to alleviate these hardships. Investigations of family caregivers more generally, though, have indicated they have a lower socioeconomic status on average than noncaregivers (Williamson & Perkins, 2014).
We aimed to address several of these methodological challenges and substantive gaps through use of the nationally representative SIPP, which includes data on disability and a range of demographic and financial variables. Specifically, we pursued the following research questions: (a) What are the sociodemographic characteristics of the sibling caregivers of people with IDD, and how do these compare to the general working age population of the United States?; and (b) What are the levels of financial hardship and public benefit program participation among sibling caregivers, and how do these levels compare to the general working age population of the United States? Given the heightened vulnerability and financial demands associated with caregiving generally, we hypothesized that sibling caregivers would differ from the general working age population in their sociodemographic and economic characteristics.
We analyzed aggregated data from the 2001, 2004, and 2008 panels of the SIPP, a nationally representative survey of the noninstitutionalized population of the United States (U.S. Census Bureau, n.d.). This longitudinal survey uses a two-stage sampling design. Primary sampling units made of at least one county are selected in the first stage; those with higher populations are automatically included whereas smaller ones are assigned a probability of being selected that is relative to their size (U.S. Census Bureau, n.d.). Each chosen primary sampling unit is then broken geographically into two strata that have opposing concentrations of low-income households, which allows for oversampling of low-income areas (U.S. Census Bureau, n.d.). Finally, the survey data provides various weighting variables that take into account this complex design and the probability of someone being in the sample (SIPP User Guide, 2008). These weights allow for direct estimates of how many people and households across the Unites States that each surveyed person and household represents. The 2001, 2004, and 2008 panels ultimately started with samples of 35,100; 43,500; and 42,000 households, respectively, for a grand total of 120,600. However, these numbers waxed and waned throughout the panels as people left the survey or as families grew.
Within each panel, a core set of questions is asked to the same household units in waves every 4 months and provides detailed information about respondents' income, assets, and use of public benefit programs. Additional sets of “topic module” questions vary by wave. We used data from the core questions and two topic modules. One module had information on disability and economic hardship (Module 8 in 2001, Module 5 in 2004, and Module 6 in 2008), and the other determined the relationships between iterative pairs of household members (e.g., father-child, aunt-nephew, nonrelatives) and childbearing (second module in all three panels). All residents in a survey household age 15 or older are interviewed individually, because they are presumed able to answer for themselves (SIPP User Guide, 2001). Heads of households respond for themselves and for those under 15 or who otherwise lack capacity. As a result, the same questions are asked of 15–17-year-olds that are asked of the adult population, despite the minor status of these teenagers. Moreover, due to their young age, few questions are asked of those under the age of 6.
Comparisons were made between a) sibling caregivers who were living with a person with IDD and (b) working-age adults. To define the sibling caregivers, we started by identifying people with IDD by age group, given the differing SIPP questions asked about those under 6 years, those 6–14, and those 15 years and over. We then proceeded to identify their caregivers. We were unable to identify those under 6 years specifically with IDD because the only disability-related question asked of them grouped developmental disabilities with all other physical and mental disabilities. However, identification was possible for all other ages, using several direct and indirect variables. For 6- to 14-year-olds, we used questions directly asking whether or not the child had “mental retardation” [sic] or a developmental disability. In addition, if a child was recorded as having difficulties with one or more activities of daily living, questions were asked about the condition or conditions underlying these difficulties. If “mental retardation,” autism, or cerebral palsy were recorded as one of these conditions, we identified the child has having IDD. We did not use “learning disability,” which was one of the conditions provided, because we felt this was too generic a term and might not accurately identify the target population. For those 15 and older, the same questions available for the 6–14-year-olds were used, in addition to two additional sets of questions related to work and health status only asked of the older group. First, among those recorded as unable to work, we identified people as having IDD if “mental retardation” was listed as the reason. Second, if “mental retardation” [sic] was listed as the reason individuals were recorded to have fair or poor health, we identified them as having IDD, as well.
We then identified sibling caregivers of people with IDD if they met the following criteria: (a) they were either the head of household or the spouse or partner of the head of household; (b) they were 18 or older and did not have IDD themselves; (c) they were one of these types of siblings—a biological sibling, half-sister or -brother, stepsister or stepbrother, adoptive sibling, or “other” sibling of someone with IDD who lived in the household; and (d) the relevant sibling with IDD was not living with a spouse or partner (because we assumed that person was more likely to have caregiving responsibilities for the person with IDD). To identify these criteria, we merged data from the two relevant topical modules within each panel—one with information on disability and one with information on household composition and pairwise relationships among members. However, these modules were administered in separate waves that were one to two years apart. Thus, to ensure that we were focusing on consistent caregiving relationships, we added a fifth criterion that (e) the first four criteria had to be met during both waves. Due to partially limited information about spouse and partner relationships during the wave with disability questions, it is technically possible under rare circumstances that criterion (d) could be met in one wave but not the other without us knowing it. We assumed that this did not occur, given that it was highly unlikely.
Finally, we identified a comparison group of working-age adults who met the following criteria: (a) they were the head of household, (b) they were 18–64 years old, (c) no one in the household had IDD, and (d) criteria (a)–(c) were met during both waves. We limited the comparison group to households headed by 18–64-year-olds; but we did not employ an upper age cutoff for the sibling caregivers and those who did not include members with IDD. This was the case even if the head of household lived alone, which could not be the case for the sibling caregivers, because the comparison of interest was to the general working-age population, which includes single-person households and has a specific age range. In addition, we follow Nancy Folbre's (2001, 2008) characterization of caregiving as unpaid work, making this the most appropriate comparison group.
To increase sample sizes, we combined observations from the 2001, 2004, and 2008 SIPP panels. The resulting sample identified 104 people meeting the sibling caregiver criteria in at least one wave; however, 26 people (25%) were excluded because they were not present or otherwise did not meet these criteria in both waves of a panel, resulting in a final sibling caregiver sample of 78 people. Similarly, 92,436 people met the working-age adult criteria in at least one wave, and 27,881 (30%) were excluded for not meeting the criteria in both waves, leaving a final working age adult sample of 64,555 people. Between the three panels, the total population of people who were consistently heads of households or sibling caregivers during both waves of interest was 86,953 (out of 118,642 who were heads in at least one wave). Using weights, these 86,953 people represented 101,607,060 U.S. households on average per panel year. The 78 sibling caregivers on average represented 81,103 (0.08%; SE: 0.01%) of these households and the 64,555 working-age adults on average represented 77,476,205 of the households (76.25%; SE: 0.19%).
There were 80 people with IDD receiving care from the sibling caregivers in the sample. They were about 4 years younger than their sibling caregivers on average (see Table 1 and Table 2), and about 60% were men (Table 1). Less than 10% had ever married or had had children (Table 1). About 15% had excellent or very good health, whereas 57% had fair or poor health, and only 43% of those 18 and older had earned at least a high school diploma or GED (Table 1).
Sociodemographic and financial indicators
We examined a host of demographic and financial indicators as dependent variables. Social characteristics included age, gender, race and ethnicity, whether the person had ever married, health status, education, and for women, whether she had ever had a child. “Race and ethnicity” was divided into five categories: non-Hispanic White, non-Hispanic Black, non-Hispanic Asian, non-Hispanic multiple or other, and Hispanic. Health status was self-rated as excellent, very good, good, fair, or poor; such global self-assessments have consistently been shown to predict mortality (Idler & Benyamini, 1997). We dichotomized educational attainment into whether or not the person had obtained a high school diploma or GED.
Economic hardship variables included individual measures of income, employment status, food security, and whether the person lived in a household that had unmet essential expenses or an unmet need to see a doctor or dentist. Employment status was dichotomized into whether or not the person was both employed and had worked in the past 5 weeks. We used the food security items in the SIPP, which use five questions to identify whether a family is food secure, has low food security, or has very low food security (Nord, M., 2006). We then identified whether or not each household had any food security (low or very low) and whether or not each household had very low food security.
Finally, regarding program participation, we used individual variables to identify whether or not each household received Supplemental Nutrition Assistance Program (SNAP: i.e., food stamps) benefits, both generally and among the subset of households that were income eligible (i.e., had income below 185% of the federal poverty level), Supplemental Security Income benefits, unemployment benefits, or any government cash transfer.
The aim of this study was descriptive, and, as such, the primary analytic strategy was comparisons of household types on the various demographic and financial variables. For weights, the SIPP includes weights for calculating mean and variance estimates that account for its complex design (SIPP User Guide, 2001). Within each panel, weights varied slightly from wave to wave. We thus chose weights depending on which wave was the source of information. For example, we used Wave 2 weights for calculating information about childbearing. For information present in both waves, such as age, we defaulted to using data and weights from the wave containing information about disability status. As recommended by the SIPP, we used Fay's modified balanced repeat replication method to estimate variances (Fay, 1984), an approach that produces nominally conservative estimates (SIPP User Guide, 2001). We used STATA (version 14.0) for all calculations. For comparisons of weighted means, STATA conducts adjusted Wald tests, and for comparisons of weighted percentages, STATA conducts corrected Pearson's χ2 tests. Both produce F statistics, and these are provided in Tables 2 and 3.
Demographic data for caregivers are presented in Table 2. Compared to the general working age adult population, sibling caregivers of people with IDD were, on average, older (51 versus 44 years, p < 0.001), more likely to be women (67% versus 50%, p = 0.010), less likely to be White (55% versus 70%, p = 0.02), and more likely to be Black (25% versus 12%, p = 0.01). Sibling caregivers were less likely to have ever been married (58% versus 80%, p < 0.001), though the result was more significant among men (44% versus 81%, p < 0.001) than women (66% versus 79%, p = 0.08). Finally, in terms of health status, though not significant, sibling caregivers were less likely to have excellent, very good, or good health (83% versus 89%, p = 0.13).
Material Hardship and Program Participation
Table 3 provides comparisons between sibling caregivers' households and the general working age adult population on income, economic hardship, and government program participation. Sibling caregivers were more likely to have income below 300% of the federal poverty level (63% versus 45%, p = 0.008) and they were marginally more likely to have income below 200% of the federal poverty level (38% versus 28%, p = 0.11), but there was not a significant difference between groups in the fraction with income below 100% of the federal poverty level. Similarly, the sibling caregivers were more likely to live in households that experienced at least some food insecurity (23% versus 10%, p = 0.002), but there was not a significant difference in the fraction experiencing the highest level of food insecurity. Finally, sibling caregivers were much more likely to live in households receiving benefits from the SNAP (28% versus 9%, p < 0.001) or Supplemental Security Income (57% versus 4%, p < 0.001).
These findings provide new information about the sibling caregivers of people with IDD. In addition to providing a new source of estimates for the sociodemographic features of sibling caregivers, they provide first approximations of previously unexamined levels of material hardship and public benefit program participation for this population.
The results indicate that these caregivers are more likely to be women, Black, older, and less well educated than other working-age heads of households. The estimates here suggest that moderate material hardship is pervasive among these sibling caregivers, though the levels of extreme material hardship were not greater than in the general population of working-age adults. The higher percentage of sibling caregivers who are women that we found here is consistent with past studies (Burke et al., 2012; Seltzer et al., 2005). However, the finding that sibling caregivers are more likely to be Black, equally likely to be Hispanic, more likely to be less well educated, and more likely to experience economic hardship than the general working-age population contrasts with much of the prior siblings literature that has focused on predominantly White, well-educated samples (e.g., Hodapp, Urbano, & Burke, 2010). This finding suggests a need for future caregiving research to give more focus at the design stages to diversity with regard to race, ethnicity, and socioeconomic status. Similarly, these findings emphasize the importance of a diverse lens for developing interventions for sibling caregivers.
This study's limitations warrant consideration to fairly assess the findings. Though we combined data from three panels of the SIPP, the relatively small sample of 78 sibling caregivers means that the estimates likely lacked stability and reliability. Future studies with larger samples should, for example, analyze the potential roles of age, race/ethnicity, and other factors in explaining the differences observed here between sibling caregivers and working-age adults. Moreover, though the survey is designed to be nationally representative broadly, it may not provide as accurate a representation of relatively small subpopulations such as sibling caregivers.
Identification of the study sample from the SIPP was necessarily indirect. To identify those with IDD, we used variables related to work and health status for those over 15 years old that were not asked of the younger population. We employed this approach even though employment is minimally relevant for those under 15 and the health status question overlapped considerably with questions about activities of daily living that were asked about younger children. In addition, the survey did not directly ask about sibling caregiver status. However, the criteria used were robust, conservative, and highly unlikely to yield households in which the sibling caregiver relationship was falsely positive. This approach ensured that individuals who were identified as sibling caregivers cohabitated with their sibling with IDD over time, bore financial responsibility as the head of household (or spouse or partner of the head), and did not live with others, such as the spouse of the sibling with IDD, who would be more likely to be the caregiver. Finally, we included working-age adults in the sample who lived alone and cut off this group after age 64, leading to definitional differences between the comparison groups. This approach was intentional because our goal was to compare sibling caregivers to the general population of working adults without caregiving responsibilities.
Regarding the nature of the measures we used, as with nearly all national health and population surveys, the SIPP relies on self-reported data. There was no clinical corroboration of the diagnosis of IDD or objective verification of financial well-being. Though self-reported data are subject to social desirability bias and recall bias, there is little reason to believe that such errors would introduce bias into these findings.
Despite these limitations, this study has important strengths. It provides the first estimates describing this population derived from a nationally representative sample. Further, the sample is not obtained from service recipient or clinical populations; it thus includes people who are not receiving any services at all.
Implications for Policy and Practice
These findings indicate that sibling caregiver households may be somewhat economically disadvantaged compared to other households and that they may be more likely to receive SNAP benefits and Supplemental Security Income. However, the data available here suggest that most eligible families did not receive SNAP benefits.
The observed pattern of moderate, as opposed to severe, material hardship may be related to the relatively higher rates of participation among these families in public benefit programs. It appears that SNAP uptake among these families may prevent the most severe levels of food insecurity. However, the program does not fully alleviate food insecurity. Similarly, Supplemental Security Income receipt may help prevent extreme levels of income poverty and unmet medical needs, particularly because it often comes with Medicaid benefits for the recipient, but it is not sufficient to prevent some levels of income poverty and generally unmet basic needs.
This picture of program participation partially alleviating barriers for these families suggests that sibling caregivers may need additional supports to fully rise out of poverty and material hardship. This is in line with previous qualitative work finding that adult siblings of people with IDD desire more numerous and more robust formal systems of support to help them manage their caregiving responsibilities and their own social and economic needs (Arnold et al., 2012). Another explanation is simply that current SNAP and Supplemental Security Income benefit levels are too low to fully meet the needs they are designed to address. Relatedly, ensuring that more of those who are eligible for these benefits receive them is a concern, because only 31% of eligible sibling caregiver families received SNAP benefits. In addition to addressing these programmatic challenges, however, it seems likely that support systems specifically targeted at sibling caregivers will be required, as well.
Health status remains an area for future study. Though the findings here were not significant, they were not completely consistent with the findings of Hodapp et al. (2010) that found adult siblings to self-report generally good health. This may be partially explained by the fact that the Hodapp et al. (2010) study focused on adult siblings generally, rather than caregivers, and a mostly White, well-educated, nonrepresentative sample. Age appeared to be an important factor related to health, in that the sibling caregivers were about 7 years older than other working-age adults on average. It is plausible that the different levels of material hardship we observed could be relevant, as well. Regardless, further study of health status with a larger sample of sibling caregivers seems warranted. Worse health status in this population would be worrisome from a policy perspective even if it were only due to the older age of the sibling caregivers, as worse health may limit their ability to be effective lifelong caregivers. This would be particularly troubling given lengthy waiting lists for publicly financed residential services (Larson, Salmi, Smith, Anderson, & Hewitt, 2011; Nord, D., et al., 2014), along with the continued slow growth in state service systems generally for people with IDD (Braddock et al., 2011) despite the increased life expectancy for this population. Policy makers are advised to seek supports for these families, and to engage in planning that provides appropriate residential services for people with IDD who can no longer live with their siblings.
The gendered nature of sibling caregiving that we observed was notable: 67% were women. This finding is consistent with patterns described by others related to the gendered nature of family caregiving (Cohen & Petrescu-Prahova, 2006; Traustadottir, 1995) and larger social patterns of gendered caregiving (Folbre, 2008). That said, our finding that male sibling caregivers in particular were less likely to have ever married than other working-age adults is at odds with previous work suggesting that only women siblings of people with IDD delayed marriage (Hodapp et al., 2010).
As people with IDD continue to live longer and the number of sibling caregivers grows, future study into the needs of these caregivers and how those needs can be met will be critically important. What is clear now is the need for more structured supports to help sustain sibling caregivers and their families.
This study analyzed data from the nationally representative Survey of Income and Program Participation to add to current understandings of the sociodemographic characteristics and financial well-being of sibling caregivers of people with IDD. Our estimates suggest that sibling caregivers were more likely to be women, Black, older, and poorly educated when compared to other working-age adults. Sibling caregiver households were more likely to experience material hardship and to receive social welfare benefits. These findings indicate policymakers should take assertive steps to provide support to these families and to plan for the time when not only parent caregivers but also sibling caregivers may no longer be able to maintain caregiving responsibilities.
We presented this work orally at the 2015 annual conference of the Association of University Centers on Disabilities, at the 2016 annual conference of the Work and Family Researchers Network, and at the 22nd Annual AHRQ National Research Services Award (NRSA) Research Trainees Conference. We presented a poster of this work at the 2016 AcademyHealth Annual Research Meeting.
Funding for this study was provided by the Rehabilitation Research and Training Center on Family Support, National Institute on Disability and Rehabilitation Research, US Department of Education, Grant # H133B130007 and the Lurie Institute for Disability Policy at Brandeis University.