PERSPECTIVES: Economic Security in Retirement for Parents of Children with Disabilities: Findings from a Mixed-Methods Study

Introduction

An increasing number of retirement-age adults have caregiving responsibilities for their children with disabilities.¹ This is indicated by the growing number of disabled adult child (DAC) beneficiaries in the Old-Age, Survivors, and Disability Insurance (OASDI) program, who qualify for benefits from the combination of a parent's earnings record and their own disability status.² In 2023, nearly 350,000 DACs of retired-worker beneficiaries received benefits from the Social Security Administration (SSA); by contrast, in 1999, the count was just under 190,000 (SSA 2024a). Indeed, OASDI benefits and Supplemental Security Income (SSI) for both parents and their children may provide important support for these families. Yet despite the potentially crucial role of SSA benefits,³ research has largely overlooked the economic well-being of retired parents of children with disabilities. Little evidence exists about how these families are faring financially or the extent to which they rely on SSA benefits relative to other income. Similarly, little is known about their perceptions of benefit adequacy. In this study, we aim to address this gap by evaluating how these households manage economically, assessing the adequacy of SSA benefits for meeting family needs, and examining the role of SSA benefits in reducing hardship.

Background and Literature Review

Both retired adults and parents of children with disabilities are groups at risk for economic hardship and financial insecurity. Retired adults face elevated risk for economic insecurity resulting from changes to their income streams and expenses after leaving the workforce. Economic insecurity risk for retirees is on the rise compared with earlier cohorts (Brown, Dynan, and Figinski 2020; Meschede, Sullivan, and Shapiro 2011). Factors such as education, employment stability, earnings, benefit access, homeownership, and health are often interconnected and interact to widen initial gaps in economic well-being (Western and others 2012; Thompson and Tamborini 2023). Women and workers of color experience disproportionate rates of insecurity in retirement (Butrica and Karamcheva 2018; Weller and Tolson 2018; Tamborini and Kim 2017, 2020).

Poverty may increase the likelihood of childhood disability, and having a child with a disability is associated with overall increases in the likelihood of poverty and economic hardship (Delobel-Ayoub and others 2015; Palloni and others 2009; Stabile and Allin 2012). These families disproportionately experience higher rates of poverty, food insecurity, housing instability, barriers to health care access, financial burden from health care costs, and phone disconnection (Kuhlthau and others 2005; Meyers, Lukemeyer, and Smeeding 1998; Parish and others 2008; Rothwell and others 2019). Among families with disabled children, single-mother and cohabiting-partner families experience more hardship than married-couple families (Sonik and others 2016). Notably, across all income levels, families with disabled children face increased hardship compared with similar-income families raising children without disabilities (Parish and others 2008), reflecting the high expenses of raising children with disabilities. As such, concerns about economic well-being are particularly salient for households with a retired adult caring for a child with a disability because they experience the risk factors and challenges of both retirees and caregivers.

Existing research on aging parental caregivers of children with disabilities primarily focuses on outcomes related to mental and emotional well-being and coping as a caregiver in old age (Band-Winterstein and Avieli 2017; Greenberg, Seltzer, and Greenley 1993; Marsack-Topolewski and Church 2019; Minnes and Woodford 2004). Research also highlights that older parents of disabled children have significant concerns about their children's future care and well-being after they die (Costanzo and others 2022; Marsack-Topolewski and Graves 2019; Sivakumar and others 2021).

Prior literature has examined the effects of informal caregiving on retirement decisions and security, but these studies typically focus on caring for an aging parent. Over time, throughout their working years and into older age, caregivers have lower asset growth and are more likely to have income below the poverty line (Butrica and Karamcheva 2018; Orel, Landry-Meyer, and Spence 2011; Wakabayashi and Donato 2006). For retirees who provide care for a family member, caregiving can affect plans during retirement and can bring additional direct and indirect costs (Dow and Meyer 2010). Providing care also influences the timing of retirement: some mothers of children with disabilities retire early so they can provide care for their children, while others continue working full or part time so they can afford the increased expenses related to their children's disabilities (Costanzo and others 2022). Differences in the intensity of care required may explain this variation in retirement timing (Jacobs and others 2017). Caregivers may even be unaware of the effect such caregiving can have on their own retirement security (Alattar and others 2019; Orel, Ford, and Brock 2004).

SSA Benefits

The unique context of retired parents caring for children with disabilities puts these families in a precarious state of economic well-being, but current federal programs, primarily in the form of SSA benefits, can potentially support these families through both retirement benefits for the parents and disability benefits for disabled family members. For families in this study, while retirement benefits may be the most obviously salient, disability benefits are likely to also be relevant, as are family benefits, particularly DAC benefits. Additionally, families may also receive payments through the SSI program.

SSA benefits play an important role for retirees. For about half of the population aged 65 or older, OASDI benefits make up over 50 percent of their family's income (Dushi, Iams, and Trenkamp 2017). These benefits play a more significant role in family income for individuals who are female, Black, Hispanic, less educated, or older (Dushi, Iams, and Trenkamp 2017). Research has also demonstrated the value of child OASDI benefits (Tamborini, Cupito, and Shoffner 2011; Tamborini and Cupito 2012) and SSI payments. Though federal SSI payments are relatively modest—no more than $967 per month per individual, or about $11,600 annually, as of 2025 (SSA 2025b)—SSI constitutes nearly 40 percent of household income for recipients under age 18 and almost half for those aged 18–64 (Messel and Trenkamp 2022).

Data and Methods

This study uses an explanatory sequential mixed-methods design (Creswell and Plano Clark 2017; Johnson, Onwuegbuzie, and Turner 2007; Teddlie and Tashakkori 2009). Quantitative findings from the study's first phase informed the study's qualitative component, including defining the target interview population, highlighting areas needing more or different information, and developing the qualitative interview guide. Combining these methods provides broader insight into the economic well-being of retired parents of children with disabilities by examining trends through the quantitative analysis while exploring parents' experiences, thoughts, beliefs, and decision-making processes through the qualitative analysis (Curry and Nunez-Smith 2014; Teddlie and Tashakkori 2009). We then integrate qualitative and quantitative findings using a “weaving” approach: results are organized by topic, and qualitative and quantitative findings related to each topic are discussed together (Fetters, Curry, and Creswell 2013, 2142).

Quantitative Analysis

Data and sample. To gain broad understanding of the economic well-being of households with a retired parent caring for a child with a disability (referred to later as “retiree-caregiver households” for brevity), we used nationally representative survey data from the 2018–2020 panels of the Survey of Income and Program Participation (SIPP). The SIPP collects detailed information on household composition, household income sources and assets (such as SSA benefits and other retirement income sources), and several other measures of economic well-being. We use data from the first wave of a household's SIPP participation regardless of the timing; as a result, participants in our sample may have different reference periods for the measures presented here (for example, income, benefits, and economic hardship experiences). Notably, the SIPP is one of the few publicly available data sources that uses detailed household economic well-being measures, such as food insecurity, and also includes child disability status and parent retirement status. We limit our sample to households with at least one ever-retired adult with their own child, of any age, in the household. Ever-retired adults are identified through a question asking whether household members have ever retired from a job or business (see Appendix A for details); therefore, some of the adults in our sample may currently be in the labor force.⁴ SIPP relationship codes identify whether the ever-retired adult has a child in the household; we do not impose any age limits on the child. This results in a study sample of 2,868 households.

Measures. Our main independent measure is a binary indicator of whether a child in the household, of any age, has a disability, which we define as any “yes” answer to one of the SIPP disability items (described in Appendix A). Based on that definition, 830 households in our sample, or 29 percent of the full sample, have at least one child who identifies as having a disability. Notably, the definition of disability used in this study is broad and comprises a number of heterogeneous conditions that are likely to differentially affect family well-being. Further, this measure is self-reported and differs from the strict definition of disability used by SSA and other federal and state agencies for disability benefit eligibility. Use of this broad measure of disability allows a large enough sample size to detect differences in association, though it limits our understanding of differences by specific health conditions or benefit eligibility. For descriptive purposes, we compare characteristics from one focal child from each household. The focal child is either the child with a disability or, in households with children without disabilities or with multiple children with disabilities, a randomly selected child.⁵

The SIPP contains detailed measures of income from earnings, retirement sources, and public programs, including SSA programs specifically. To examine overall household resources and sources of income, we include a recoded measure of the total household income that covers income from all sources. This includes income from wages or earnings (that is, earned income from the labor market) and income from all retirement sources (such as employer-sponsored and private savings accounts and defined benefit plans). It also captures the asset value of retirement savings accounts (both private and employer-sponsored) and whether anyone in the household has a pension or defined benefit plan, even if they are not currently receiving income from the plan. Finally, it includes whether the household receives Supplemental Nutrition Assistance Program or Temporary Assistance for Needy Families benefits.

For income from SSA-administered programs, we examine whether the household reported receiving any OASDI benefits and then categorize this income by adult benefit type (retirement, disability, widow(er), spousal, or other) or child benefit type (survivor or disability). We also examine whether the household reported receiving SSI payments. We sum the amount of all reported benefits from SSA sources (that is, both OASDI benefits and SSI payments) and calculate the proportion of household income from SSA sources.

Next, we incorporate measures of overall economic hardship—the household's income-to-poverty ratio (based on the Census Bureau poverty thresholds) and whether the household income is below 100 percent or 200 percent of the federal poverty line. Our analysis includes three measures of specific hardship: food insecurity, based on a six-item Department of Agriculture scale included in the SIPP; utility hardship, which indicates whether the household missed at least one utility payment in the previous 12 months; and rent or mortgage hardship, which indicates whether the household missed at least one rent or mortgage payment in the previous 12 months.

Finally, we capture a variety of household demographic measures that may be associated with economic well-being or child disability status. These measures are described in more detail in Appendix A. We use household-level annual weights for the bivariate statistics.

In examining the characteristics of retiree households, we find differences between households supporting children with disabilities and the comparison households with children without disabilities (Table 1). The oldest parent and the focal child are, on average, slightly older in retiree-caregiver households than in comparison households (72.4 years compared with 69.0 years, and 39.0 years compared with 37.6 years, respectively). Age differences may reflect the higher likelihood that children with disabilities continue to live with parents for a longer period compared with children without disabilities.

The majority of the households in our sample have another individual with a disability in coresidence, though the share is higher for retiree-caregiver households. Some of the SIPP disability questions are associated with aging, such as difficulty using stairs or difficulty hearing; given that our sample selects on retirement, this, combined with the genetic component of some disabilities, may explain the overall prevalence of households with other members with a disability. Furthermore, retiree households with a child with a disability are slightly more likely to be multigenerational, with either the child's children or the parent's parent living in the household.

Similar to general population demographics by disability diagnosis (Houtrow and others 2014; Young 2021), retiree households with a child with a disability are more likely to have a head of household who identifies as White and less likely to have a householder who identifies as Asian. Also, coresident children with disabilities are more likely to be male than coresident children without disabilities. Retiree-caregiver households are disproportionately more likely to have one parent, with higher proportions of both divorced and widowed parents, and less likely to have a married head of household. Adults in households with children with disabilities have lower education levels and, consistent with prior literature (Houtrow and others 2014; Young 2021), these households are more likely to reside in nonmetropolitan areas. Panel B of Table 1 presents household income statistics discussed in the Results section.

Analysis. Our analysis examines the overall economic well-being of retiree-caregiver households, the role of SSA benefits in these households, and the extent to which social characteristics are correlated with these outcomes. To address the first issue, we conduct simple difference-in-means tests for economic well-being measures for retiree households with a child with a disability and comparison households (see Table 2 in the Results section). We further examine these associations using regression analyses, which account for some potential confounding factors using demographic covariates (Table 1 Panel A). We use ordinary least squares (OLS) models for both our continuous and bivariate outcomes for ease of interpretation but note that results are robust to the use of logistic regression models for binary outcomes. Next, we use interaction models to assess how SSA benefit receipt may moderate the association between having a child with a disability in the household and each measure of economic hardship. We use separate models interacting child disability status with receipt of any OASDI benefits (that is, retirement, disability, widow(er), spousal, or other family benefits), receipt of retirement benefits only, and receipt of SSI payments. For all OLS models, we use SIPP annual household replicate weights. For more details about our analyses, see Appendix A.

Qualitative Analysis

The second phase of our study is a qualitative analysis with two primary goals: to provide context for our study's quantitative findings related to economic security in retirement, and to understand experiences with and perceptions of SSA benefit adequacy among our sample of interview participants. Notably, while these findings provide insights for thinking about the experiences of some families served by SSA programs, our qualitative sample is small and not representative of all families who participate in these programs; therefore, results are not generalizable to a broader population of parents or families.

Recruitment. We recruited 12 parents who considered themselves partially or fully retired and who were caring for at least one child (of any age) with a disability. Additionally, at least one person in the participant's household, or a child with a disability for whom they provided care and who was living outside the household, needed to be the current recipient of any type of SSA benefit. We used recruitment quotas to ensure heterogeneity in our sample by race and marital status and to ensure our sample included participants who were receiving SSI or who had a spouse or child with a disability who was an SSI recipient. Because the quantitative analysis suggested a broad definition of disability was likely to maximize sample size, we employed a broad definition of disability in our recruitment materials.

We shared a study flyer via email with Wisconsin agencies that provide services or resources to people with disabilities or retirees and asked them to share study information with clients. The flyer described the study's purpose and eligibility criteria and included a link to an online survey for interested individuals. The qualitative interview sample ultimately included parents from an array of backgrounds: seven fully retired and five partially retired; two fathers and ten mothers; eight who were currently married and four who were never married, divorced, or widowed. Seven participants identified as White, while five identified as Black, Hispanic, or another race or ethnicity. Half of the interview participants reported completing a bachelor's degree or higher. Nearly all participants lived with at least one child with a disability; all provided care for a child with a disability and, on average, estimated providing 280 hours of care per month.

Data collection. Individual interviews were conducted via phone or video using a semi-structured interview guide. The guide covered participants' households, families, and caregiving; work experiences and retirement circumstances; household income and benefits, including participants' perceptions of resource adequacy; and decision-making about caregiving, retirement, and work. Interviews lasted 45 to 90 minutes, and participants received a $75 gift card upon completion. The University of Wisconsin's Institutional Review Board approved the study protocol and data collection.⁶

Results

This section presents our quantitative and qualitative findings, focusing on measures of economic well-being and perceptions of SSA benefits adequacy.

Economic Well-Being of Households with Retired Caregivers of Children with Disabilities

We address this research question primarily with quantitative data. In our initial bivariate analysis (Table 1 Panel B and Table 2), we find retiree-caregiver households are more economically disadvantaged across a variety of measures compared with retiree households with children without disabilities. Looking at overall household income, a measure that combines both earned and unearned income, far more retiree-caregiver households have incomes at the lower end of the distribution (Chart 1), averaging nearly 25 percent lower than comparison households ($86,552 compared with $115,367, Table 1 Panel B). Households with a child with a disability also report receiving means-tested support (Supplemental Nutrition Assistance Program or Temporary Assistance for Needy Families) at higher rates than the comparison households in our sample.

As indicated in Table 2, retiree-caregiver households have, on average, a lower income-to-poverty ratio (3.92 versus 5.74), including a statistically significant higher proportion with household income below 200 percent of the federal poverty line (30 percent compared with 18 percent). Households with a child with a disability are more likely to experience other hardships, including twice the level of food insecurity (13.4 percent compared with 6.6 percent), nearly twice the level of missed utility payments (10.1 percent compared with 5.4 percent), and higher levels of missed rent or mortgage payments (6.0 percent compared with 4.0 percent). These findings indicate that the likelihood of experiencing economic hardships is positively associated with living in a retiree household with a child with a disability.

There are also important differences in the sources of household income (Table 1 Panel B). While the majority of all sample households report some earned income from wages or self-employment, earnings are reported by only 64 percent of retiree-caregiver households but 87 percent of the comparison households. While about 40 percent each of both retiree-caregiver households and comparison households report some form of privately held retirement income (such as from a pension, 401(k), or similar retirement savings account), the account type of those holdings differed by household type. Retiree-caregiver households report lower rates of participating in, or being covered by, pensions or defined benefit plans (11.9 percent compared with 19.2 percent) and lower rates of having a 401(k), 403(b), or Thrift Savings Plan account. When retiree-caregiver households do have these accounts, they have, on average, lower levels of savings.

When considering SSA benefits—a major focus of our analysis—there are significant differences in both payment amounts and the likelihood of payment receipt dependent upon a household's child disability status (Table 1 Panel B). Eighty-two percent of retiree-caregiver households receive some OASDI benefit compared with two-thirds of the comparison households. There are also differences by benefit type: retirement (70.8 percent of retiree-caregiver households compared with 57.4 percent of comparison households), disability (29.6 percent and 11.0 percent), widow(er)s (8.3 percent and 5.6 percent), other family benefits (3.4 percent and 2.1 percent), and child benefits for children under 18, including survivor and disability (5.3 percent and 3.8 percent). This results in a higher, on average, amount of income from SSA benefits for households with a child with a disability by 45 percent ($22,063 compared with $15,176). As expected, households with a child with a disability are more than twice as likely to receive SSI payments, and, on average, they receive more of their income from SSI than do comparison households. Taking both SSI payments and OASDI benefit income into account, households with a child with a disability receive, on average, 25 percent of their household income from SSA programs, compared with 13 percent for comparison households.

When we employ our multivariate models to control for other factors that may influence economic hardship and child disability status, the association between having a child with a disability and our economic hardship measures diminishes somewhat but generally holds (Table 2). We use OLS models to estimate the associations among our seven outcome measures of economic hardship—income below 100 percent of the poverty line, income below 200 percent of the poverty line, overall income-to-poverty ratio, food insecurity, utility hardship, rent or mortgage hardship, and SSA benefits as a share of household income. Our findings indicate that, while controlling for other factors, having a child with a disability in the household increases the likelihood of having income below 200 percent of the poverty thresholds by 9.2 percentage points (compared with a difference-of-means of 12.2 percentage points). For the income-to-poverty ratio, the comparison of means shows that having a child with a disability is associated with a ratio reduction of 1.82, but the OLS regression coefficient is −0.86, or a difference of less than one unit of the respective poverty threshold amount.

We also find statistically significant associations with our measures of food, housing, and utility hardship. For example, retiree-caregiver households are 5.6 percentage points more likely to experience food insecurity, 4.3 percentage points more likely to report missing a utility payment, and 2.0 percentage points more likely to report missing a rent or mortgage payment than comparison households. Households with a child with a disability also, on average, report a higher proportion of household income from all SSA sources (nearly 14 percentage points higher).

Disabled Children's Needs and Economic Hardship

Our interviews provided context for these findings. Consistent with prior research (Parish and others 2004; Parish, Rose, and Swaine 2010; Costanzo and others 2022), parents described several ways in which the financial needs of their children with disabilities affected their household's available financial resources in retirement. The disabled children of most parents we spoke with did not work in paid employment, which aligns with SSA program statistics on the prevalence and average earnings of SSI recipients (SSA 2023). Parents described the benefits of paid work, for children who did engage in it, as primarily social or skill building. The jobs of children with disabilities were typically very limited in hours and pay and not adequate for covering their living, health, and care costs. The children of nearly all parents we spoke with received SSA benefits (often SSI), and some augmented these children's benefits with other public benefits.

Most interviewed parents provided significant financial support for their children with disabilities. Nearly all said that the needs of their children could not be fully met through their SSA benefits and other income; therefore, parents needed to fill the gaps while often living on a fixed income themselves. A mother explained, “[My child] receives help from us. You know, he couldn't live without the support we get. I mean, the support that Social Security gives for people with a disability is under $1,000 a month.” Notably, these findings align with prior qualitative work that also identified financial insecurity and hardship among some caregiving parents of children with disabilities because of heightened financial needs for the children paired with limited parental opportunities to work, earn, and save for retirement (Banda, Carter, and Nguyen 2022; Yoong and Koritsas 2012). Beyond additional expenses, some parents said that before they had retired, they needed to draw on retirement account balances to cover costs for their disabled children—leaving them with fewer financial resources available when finally in retirement.

Balancing disabled children's needs and household financial resources presented challenges for most parents in the study; single-parent families experienced particular challenges. As their disabled child's sole caregiver and income-earner during their working years, the single parents we spoke with often needed to make tradeoffs between work and caregiving that limited their income potential and retirement savings. In retirement, these parents had fewer benefit or income streams on which to draw.

Given the challenges some interview participants faced for earning and saving, and consistent with findings from the quantitative analysis and prior research (Parish and others 2008), many families in the qualitative interview sample experienced varying degrees of financial hardship. For some parents, covering basic household needs—including rent, utilities, and medication—was a struggle. One parent explained:

Sometimes you have to make decisions. Like for example, like toiletries, or laundry soap, or things that are less important. They're necessary, but less important. Because like I said, we don't get food stamps and we have to put the food as priority, the bills as priority. … I add up what we have coming in and then prioritize the more important things. We need the light and we need the gas, that's the heat for the children.

Family Perceptions of SSA Benefit Adequacy

In discussions with parents, the role that SSA benefits play in a family's overall economic situation provides important context for considering the adequacy of benefits. In families with access to multiple income sources in retirement—particularly for families in which both parents had earnings and retirement savings during their working years—SSA benefits contributed to family economic well-being in retirement but were typically not the household's primary income source. By contrast, in families that lacked other retirement income sources (because parents did not work in jobs with employer-sponsored retirement benefits or did not have, or had already cashed out, retirement savings, particularly single-earner households), SSA benefits were often the main or sole source of household income. In these latter situations, parents described SSA benefits as crucial to family survival.

When parents without significant income from retirement accounts or plans were asked what it would mean for their family to be without SSA benefits in retirement, their responses included, “I'd probably be out on the street. Yeah. That's my income,” “We would be destitute,” and “We'd be homeless.” SSA program statistics suggest that these experiences are not isolated: among OASDI beneficiaries aged 65 or older, about 15 percent of women and 12 percent of men rely on their Social Security benefits for 90 percent or more of their income (SSA 2024b). A single mother coresiding with two adult children with disabilities, for whom her children's SSI constituted the household's only source of income, described living together as the only way her family could afford rent. She stated:

The money—I mean, it's just not enough, obviously. You know, I don't know what these boys would do without me. Their [SSI] money is not enough. You figure that three of us live together now so, you know, we divide stuff by three, but those boys come up short every month. I mean, can you imagine if they were separate and paying, you know, an apartment for $850, $875? Like, I can't imagine.

Our quantitative analysis suggests the experiences reported by retiree-caregiver families are not outside the norm. Using interaction models, we consider the extent to which receipt of any SSA benefit modifies hardship for retiree families with a child with a disability (Chart 2; Appendix B contains full results). Our focus is on interaction estimates, which measure the effect of SSA benefit receipt on economic hardship measures (that is, how SSA benefits moderate the association between economic hardship and having a child with a disability in the retiree household, as shown in Tables 1 and 2).

For example, in the OASDI benefits interaction models, the main effect of just having a child with a disability in the household is an average poverty rate 6.6 percentage points higher than for comparison households; however, factoring OASDI benefits into the interactions produces a counteracting poverty rate reduction of 5.8 percentage points. OASDI benefit receipt is also associated with a reduced likelihood of missing utility payments (offsetting an 8.0 percentage point increase in utility hardship by 4.7 percentage points) but not with a decrease in the likelihood of food insecurity.

In our SSI interaction models, the average poverty rate for retiree-caregiver households is 2.1 percentage points higher than for comparison households, and the likelihood of having income below 200 percent of poverty is 10.4 percentage points higher. However, SSI receipt decreases the likelihood of having income below the poverty threshold by 6.2 percentage points, and, notably, counteracts the likelihood of having income below 200 percent of the federal poverty line by 16.8 percentage points. SSI receipt does not moderate the association between child disability status and food insecurity, utility hardships, or housing hardships.

Collectively, these estimates indicate that OASDI benefits and SSI payments do play a role in supporting the economic well-being of retiree households with a child with a disability and provide some mitigation of economic hardship.

Concerns About Future Benefit Adequacy for Children

For many of the parents we interviewed, the topic of SSA benefit adequacy was closely tied to their thoughts and worries about the future. Parents in the study had given considerable thought to how their children's economic and caregiving needs would be met after their own deaths, and parents of all economic backgrounds expressed anxiety about their children's financial futures. One mother stated:

No one's ready for this until it happens. If your child is on SSI, and a parent passes … with having a special needs child and being in the system on Social Security, I think you want to make sure that he's not going to fall through the crack somehow because of a loss.

Parents worried about who or what entity would watch out for their children after their deaths. Most parents in the study coresided with their disabled children, addressing both care and housing needs. The future costs associated with stable, safe, and supportive housing; ongoing medical treatment; and adequate care—particularly for children who required 24-hour or specialized care—loomed large for parents. At the same time, parents had concerns about the costs and quality of residential care and about the ability of such facilities to meet their children's needs, as one mother described:

When somebody says, “Well, aren't you going to put your son into a group home?” I'm like, “No, no, not going to do that.” That would be the last avenue that I would do, because of his complex medical.

Similar to our findings on perceptions of SSA benefit adequacy for meeting current household needs, parents often viewed SSA benefits as “vital” to their children's future economic well-being. As one mother stated, “Oh, [SSA benefits are] vital. Just absolutely vital … we hope she's able to do some meaningful employment, but it would never be enough to support her at all.” And yet, they also often feared that SSA benefits alone would not be adequate for fully covering their disabled children's expenses. One mother said:

I'm already thinking about like things like, what happens after someday when I'm not around anymore? Who's going to be there when my mom's not there and my brother's not there? Like, are there cousins that are going to be there? Who's going to be there to help her? And then, it's just like you want everything in order so that there isn't much to do when it comes to money and stuff.

Discussion

Economic well-being for retired parents with a child with a disability can be precarious. Though financial security in retirement may be elusive for many Americans (Johnson and Favreault 2021), our findings emphasize the particular difficulty for retiree-caregiver families. In interviews, we heard from parents that family needs took precedence over employment throughout the parents' labor market years, which constrained available resources in retirement. Some parents reported drawing down retirement savings before their retirement years to cover expenses for their disabled children; some also described having to choose between which expenses to prioritize each month during retirement. Indeed, in our quantitative analysis, we find that in a recent nationally representative sample of households with a retired adult coresiding with a child, having a child with a disability is associated with an increased likelihood of experiencing a variety of hardships. Even when controlling for demographic and household factors, having a child with a disability in the household is associated with an overall decrease in income-to-poverty ratio and with increased risks of having income below 200 percent of the federal poverty threshold, of food insecurity, of missing a rent or mortgage payment, or of missing a utility payment.

In this context, one of our key findings is, in the words of one parent, how “vital” SSA benefits are for many families. The quantitative data illustrate this clearly in many respects; a significant majority of retiree-caregiver households receive SSA benefits through the OASDI program (82 percent) and nearly a quarter receive SSI payments. In combination, OASDI benefits and SSI payments make up a substantial amount of total income for these families, 25 percent on average. Though our qualitative interview participants are not representative of all families, their interview responses highlight the key role SSA benefits play in helping some families make ends meet. These findings are consistent with previous research on the importance of SSA retirement benefits, in particular, for families with limited economic resources (Devlin-Foltz, Henriques, and Sabelhaus 2016). Still, we find that income from SSA programs is not always fully adequate in meeting current family needs, particularly for families who receive SSI.

We find that uncertainty about parents' own current and future needs—as well as their children's care, housing, and essential needs—looms large for parents. These concerns are closely tied to the role of SSA benefits in their current realities as well as their children's futures. Further, our quantitative analysis indicates that though SSI receipt was associated with a decrease in the likelihood of having income below 100 percent or 200 percent of the poverty line for retiree households with a child with a disability, SSI receipt had no statistically significant moderating effect on the other measures of hardship.

Our findings emphasize the considerable role of SSA benefits, of all kinds, as retirement income for parents with children with disabilities and for retiree-caregiver household income generally. For households who may have limited labor market participation, which may include single-parent families, this may be particularly salient. Women, who disproportionately provide caregiving, are a population of particular concern. SSA family benefits and overall benefit formulas account for some of these considerations.

Eligibility criteria for SSA programs can result in coverage gaps and payment cessations. Asset limits for SSI recipients are a particular concern for retiree-caregiver parents who wonder how potential resources could jeopardize SSI eligibility for their disabled children. Reevaluating the SSI asset limit may provide additional security for all SSI recipients but particularly for these households. For many families in our study, SSA family benefits, through DAC or spousal benefits, were specifically relevant, and many families in our qualitative sample had experienced, or were fearful of experiencing, benefit changes as a result of a parent's death. To aid these families, SSA might provide advanced guidance about benefit transitions after a parent's death and policymakers may consider policy changes designed to minimize abrupt benefit reductions for family beneficiaries after an entitled worker's death.

Like all families with children, families with children with disabilities are eligible for a host of programs and supports throughout their child's lifetime. In some cases, given retiree-caregiver families' unique needs and contexts, these policies (designed to support families with children without disabilities) are not sufficiently meeting retiree-caregiver family needs, which results in decreased economic well-being in retirement. For example, parents interviewed in our study described being unable to access sufficient childcare or early childhood education resources for their disabled children as well as increased costs as a result of their child's disability. Family policies could consider a child's disability in eligibility or benefit formulas to provide more adequate support.

Conclusions and Implications for Further Research

Our findings should be considered in light of some caveats and limitations. Our interview sample was small and nonrandom and therefore not generalizable to a broader population of parents. Also, our study required parents to self-identify as at least partially retired. Parents who continue working later in life while providing care for a child with a disability may have different experiences and economic situations than those who identify as fully retired. Additionally, we conducted interviews with only one parent-respondent per family. Within families, information about caregiving, work experiences, SSA benefits, and household finances may vary by parent; consequently, our interviews offer only a partial view into family experiences within two-parent families.

Just as our qualitative data balance some of the limitations of what we can learn from our quantitative data, our quantitative data address some of the caveats of our qualitative data collection. Still, our quantitative analysis is not without limitations. Notably, though we use recent nationally representative survey data, we are limited in what we can observe because of a limited sample size of households with a retired adult and a child with an identified disability in the household. Our analysis does not account for families with a retired adult where a child with a disability lives outside the household. We also do not have a sufficient sample size to disaggregate by disability type, and impairment variations are likely to affect household economic well-being quite differently. We also note known underreporting of income, particularly SSA benefits, in national survey data because of self-reporting. Future research using SSA program data to examine this population could mitigate many of these concerns.

Additionally, we use data collected in 2020 and earlier, meaning they do not account for the substantial economic disruptions that affected households during the COVID-19 pandemic, which may have been particularly salient for households with a child with a disability. As more waves of data are collected via the SIPP or other sources, researchers and policymakers should continue to gather updated evidence about how retiree families with a child with a disability are faring in retirement. Future research can provide additional evidence as more recent data become available.

Appendix A

This appendix provides additional detail about our quantitative data and analysis, including model specifications and robustness checks. Our primary data source is the SIPP, a nationally representative, household-based survey that contains detailed measures of household income sources and program participation as well as household composition. We use data from the 2018–2020 SIPP panels, meaning data from households that were first interviewed in 2018, 2019, and 2020. Households are interviewed annually for 4 years, with each annual interview considered a “wave” of data. Though longitudinal, the SIPP is used for cross-sectional analysis in this study, using the first wave of data provided by households (that is, the household interview from 2018, 2019, or 2020). SIPP data are provided at the month level; we annualize our measures for this analysis and use household-level annual weights for our bivariate analysis and household-level replicate weighting for our multivariate analysis.

Disability Status

Notably, our measure of disability is based on responses to the SIPP's disability questions. This self-reported measure differs from SSA's programmatic disability determination, which requires meeting specific medical and functional criteria for benefit eligibility.

• Three child-specific SIPP questions assess whether a child—
  • younger than age 5 has any conditions that limit ordinary activity,
  • aged 5–14 has any conditions that limit ability to play with other children, or
  • aged 5–14 has any conditions that limit the ability to do schoolwork.
• Six general SIPP questions assess whether household members aged 5 or older have difficulty—
  • walking or climbing stairs,
  • with cognition tasks,
  • doing errands alone,
  • hearing, or
  • seeing.
• Two work-specific SIPP questions assess whether a household member—
  • has a condition that makes it difficult to find or keep work, or
  • is able to work at all.

Retirement Status

To determine whether a parent has ever been retired, we use the SIPP question “Has … ever retired (for any reason) from a job or business?”

Covariates

Our multivariate models include the following covariates.

• Household-level covariates are—
  • Total number of adults (including children aged 18 or older),
  • Number of retired adults,
  • Total number of children (including children aged 18 or older),
  • Number of children younger than age 18,
  • Age of the oldest parent,
  • Highest education level of any adult,
  • Presence of a multigenerational family member,
  • Presence of any household member with a disability other than the focal child,
  • Urbanicity (metropolitan or nonmetropolitan), and
  • Census Bureau region.
• Householder-based covariates are marital status and race or ethnicity.
• Focal child–related covariates are age and sex.

For additional SIPP documentation, see https://www.census.gov/programs-surveys/sipp.html.

Models

For our main outcomes (Table 2), we run each model separately and also apply a Westfall and Young (1993) correction to account for multiple hypothesis testing. Notably, our results are robust to other functional forms, including logit and probit models. Therefore, we opt for using a linear probability model for ease in interpretation of our estimates.

After running our main models, we estimate associations for subgroups of interest (see Appendix B). The subgroups and their sample sizes are as follows:

• families identifying as White, n = 1,691;
• families identifying as races or ethnicities other than White, n = 1,177;
• metropolitan households, n = 2,306;
• nonmetropolitan households, n = 562;
• two-parent families, n = 1,598;
• single-parent families, n = 1,270;
• highest education level in household is a high school education or less, n = 665; and
• highest education level in household is a bachelor's degree or higher, n = 1,336.

Because our intent is to examine the highest and lowest levels of education, these subgroup models do not include households with some college or a 2-year degree. Though not the focus of our analysis, we use Stata's suest command to test for statistical differences in estimates across subgroup models. We note that our subgroup analyses have limited sample sizes, resulting in large standard errors that likely hinder the generalizability of our findings.

To examine the role of SSA benefit receipt on moderating hardship experiences, we run interaction models to test whether the association between having a child with a disability and economic hardship differs depending on SSA benefit receipt. We use three different indicators for households that report receipt of (1) any OASDI benefit, (2) OASDI retirement benefits specifically, or (3) SSI payments. We interact those SSA benefit receipt indicators with an indicator for child disability presence in the retiree household. We use the same covariates and general analytic models as in our non-interaction models described above. We then estimate interaction models for each subgroup. For brevity, we present estimates only for the interaction effect for the subgroups but can provide the main effects upon request (macostanzo@wisc.edu).

Appendix B