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ERIC EJ968438: The Economic Costs of Childhood Disability PDF

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The Economic Costs of Childhood Disability The Economic Costs of Childhood Disability Mark Stabile and Sara Allin Summary Childhood disabilities entail a range of immediate and long-term economic costs that have important implications for the well-being of the child, the family, and society but that are difficult to measure. In an extensive research review, Mark Stabile and Sara Allin examine evidence about three kinds of costs—direct, out-of-pocket costs incurred as a result of the child’s disability; indirect costs incurred by the family as it decides how best to cope with the disability; and long-term costs associated with the child’s future economic performance. Not surprisingly, the evidence points to high direct costs for families with children with disabili- ties, though estimates vary considerably within these families. Out-of-pocket expenditures, particularly those for medical costs, for example, are higher among families with children with a special health care need. An important indirect cost for these families involves decisions about employment. Stabile and Allin examine several studies that, taken together, show that having a child with disabilities increases the likelihood that the mother (and less often the father) will either curtail hours of work or stop working altogether. Researchers also find that having a child with disabilities can affect a mother’s own health and put substantial strains on the parents’ relationship. In the longer term, disabilities also compromise a child’s schooling and capacity to get and keep gainful employment as an adult, according to the studies Stabile and Allin review. Negative effects on future well-being appear to be much greater, on average, for children with mental health problems than for those with physical disabilities. Stabile and Allin calculate that the direct costs to families, indirect costs through reduced family labor supply, direct costs to disabled children as they age into the labor force, and the costs of safety net programs for children with disabilities average $30,500 a year per family with a disabled child. They note that the cost estimates on which they base their calculation vary widely depending on the methodology, jurisdiction, and data used. Because their calculations do not include all costs, notably medical costs covered through health insurance, they represent a lower bound. On that basis, Stabile and Allin argue that many expensive interventions to pre- vent and reduce childhood disability might well be justified by a cost-benefit calculation. www.futureofchildren.org Mark Stabile is a professor of economics and public policy in the Rotman School of Management and School of Public Policy and Governance at the University of Toronto. Sara Allin is an assistant professor at the School of Public Policy and Governance at the University of Toronto and a senior researcher with the Canadian Institute for Health Information. The authors thank Kelsey Norman and Juliana Yi for their excellent research assistance, and Ron Haskins for useful comments on earlier versions of this paper. VOL. 22 / NO. 1 / SPRING 2012 65 Mark Stabile and Sara Allin Childhood disability entails only at the most recent contributions.2 We economic costs that are to also discuss the benefits of various empirical some extent measurable. This approaches and remaining empirical article focuses on children challenges. with disabilities from birth through childhood and adolesence and the Modeling the Economic Costs of associated direct and indirect costs of these Childhood Disability disabilities on both the immediate family and At least two areas of economic theory are the child. Where possible, it also considers particularly relevant to the study of the costs the costs of childhood disability on publicly of childhood disability. One models the financed programs. relationship between health status in child- hood and longer-run economic outcomes. The economics literature provides a theoreti- The main idea is that health is an input into cal foundation for the structure and timing of the production of human capital, the devel- these costs. Starting with the seminal work of opment of the competencies and knowledge Michael Grossman and Gary Becker, the that increase one’s ability to work and to be theoretical literature in this area provides productive. The “health stock” itself is a func- some testable implications for the economic tion of current and past investments.3 This costs of early childhood disability on family idea can provide an organizing framework for decision making, out-of-pocket costs, and the the literature on the longer-term economic child’s accumulation of human capital that consequences of early childhood disability. will help shape future economic perfor- One such model, presented by Michael mance.1 These testable implications guide Baker and Mark Stabile, assumes that chil- this review of the empirical literature. dren are born with a stock of health that can Dividing this literature into two major be eroded by chronic conditions (both mental streams, we first examine the relationship and physical), diseases, and injuries.4 A child’s between childhood disability and contempo- health stock can also be augmented with raneous direct and indirect costs to families. parental investments, including investments We then review the empirical literature on of time and money, so that the health stock the relationship between childhood disability in the next period is a function of the health and future human capital and economic stock in the previous period, investments success. Finally, we attempt to aggregate the made to health, and any realized insults to various economic costs, including the costs of the child’s health. This theoretical relation- disability on public programs in the United ship is expressed in figure 1. States, to present an overall cost of early childhood disability. At the most basic level, a child must be well enough to go to school. Beyond that, how- This literature is vast and has a long history. ever, changes in the child’s stock of physical To narrow the focus, this review concentrates and mental health affect the ability to learn on the empirical contributions in economics, and participate at school. Health is therefore public health, and health policy that allow for one determinant of human capital. Human causal inference on the major implications of capital, in turn, influences future economic the theory. Because others have examined outcomes such as labor market earnings (as much of this literature in the past, we look illustrated in figure 1). This simple economic 66 THE FUTURE OF CHILDREN The Economic Costs of Childhood Disability Figure 1. Pathways for Child Health to Affect Adult Outcomes Parental investments Education Health Health Adult at birth in childhood outcomes Illnesses and injuries Adult health framework produces several testable impli- contribute to the current health stock, which cations that are explored in the empirical then contributes to current human capital literature. First, children from families with accumulation.6 more resources would be expected to have, on average, a higher level of health. Insults to In addition to the theoretical literature on health may also depend in part on the child’s the production of health and the long-term environment (housing stock, neighborhood, economic consequences, a second strain of and the like), so children from families with the economics literature examines the labor fewer resources not only may have poorer force and consumption decisions of families health but also may receive more shocks to and the implications for these decisions of their health. Families with more resources having a child with poor health. Jacob Mincer may also be able to mitigate the effects of and Gary Becker explored models of labor child health shocks more than families with supply where the costs of time and household fewer resources (for example, through better responsibilities were explicitly introduced information or better medical treatment). into the labor allocation decision.7 Others Children who have poor health are likely to have expanded this literature considerably have lower levels of human capital and there- to consider the specific issue of female labor fore poorer labor market outcomes. supply and the effects of child care on a fam- ily’s labor supply decisions,8 as well as on its James Heckman describes the notion of consumption decisions. “dynamic complementarity” in the case of human capital accumulation as arising when On the consumption side, the idea is that the “stocks of capabilities acquired in the previ- child’s well-being contributes to the overall ous period make investment in the [current] well-being, or utility, of the family. Parents period more productive. Such complemen- make decisions about what to purchase, and tarity explains why returns to educational how much time to spend on caring for their investments are higher at later stages of the children, to increase the family’s overall well- child’s life cycle for more able, more healthy, being. For example, families with disabled and more motivated children.”5 In this rep- children have to buy some things (such as resentation, health stocks in previous periods wheelchairs) that other families do not have VOL. 22 / NO. 1 / SPRING 2012 67 Mark Stabile and Sara Allin Figure 2. Pathways for Childhood Disability to Affect Maternal Labor Market Activity Time costs to manage childhood disability Child care Maternal Child health availability employment and quality Financial costs to manage Available childhood disability wages to buy, and these purchases have implications Another strand of the theoretical literature for other consumption decisions. on the economics of the family hypothesizes that children may affect the stability of the On the labor supply side, mothers (much of marriage. The desire to have children should the literature is focused on maternal labor positively influence the probability that supply) make decisions on whether and how individuals wish to marry.10 By extension, a much to work based on the broad needs of negative shock to the well-being that parents the family, both financial and uncompensated derive from children may lead to lower mar- riage rates or higher divorce rates.11 home needs. Mothers make decisions about how much to work based on the wage they While providing mostly intuitive results, can earn, how much time they would like to these models serve as a starting point to spend on leisure activities, and how much identify the channels through which child- time they need to spend with their child. The hood disability can affect the economic choice that a mother makes about whether well-being of both the child and family. The to work will then depend on the perceived remainder of this article explores the empiri- benefit of working another hour versus cal literature that stems from these intuitive the benefit of staying home (or consuming theoretical implications. We examine four leisure) conditional on the other variables specific areas: the longer-term economic in play, including, importantly, the quality costs to a child with a disability measured by of child care that is available and its cost.9 human capital attainment and labor market The empirical literature explores whether outcomes; the effect of childhood disability having a child with a disability increases the on the financial decisions and well-being of mother’s labor supply, because the child’s the family; the effects of childhood disability poor health places greater financial pressures on the labor market decisions of the family, on the family, or decreases it, because of the and in particular the mother’s labor supply; increased time required to care for the child. and the effects of childhood disability on Figure 2 illustrates the theoretical pathway family structure. This literature faces a between childhood disability and maternal number of empirical challenges that are employment. described later. One key challenge relates to 68 THE FUTURE OF CHILDREN The Economic Costs of Childhood Disability the unavailability of data; few studies that receiving benefits, for whom the prevalence include information on economic costs also of childhood disability is high compared with have good measures of disability. (The the general population14). Some studies also difficulties associated with measuring disabil- estimate the costs of caring for children with ity in addition to the evolving definition of particular diseases.15 Consistent with other disability are discussed in greater depth in reviews, cost estimates reported here are in the article in this volume by Neal Halfon U.S. dollars in the year the data were col- and others.)12 lected in the different studies. In the final section that summarizes costs, all cost figures Childhood Disability and Direct are inflated to 2011 dollars. and Indirect Costs to Families An extensive literature documents the direct A review of seventeen studies from 1989 to and indirect costs to families associated with 2005 that estimated the annual direct (con- childhood disabilities. Direct monetary costs sumption) costs associated with severe physi- include expenditures on health care, thera- cal childhood disabilities (such as cerebral peutic, behavioral, or educational services; palsy and spina bifida) shows a range from transportation; caregivers; and other special $108 to $8,742.16 The upper estimate was needs services. Indirect costs consist primar- reported in a study of only sixteen families, so ily of reductions in parents’ ability to sustain it may not be generalizable; the next high- paid employment. This loss of productivity est estimate was $6,036 from the United could relate to additional time that is Kingdom for additional costs annually for required to care for a child with a disability a severely disabled child compared with a combined with high costs or unavailability of healthy child.17 An earlier review of six stud- adequate child care. ies reported average annual expenditures in the 1980s ranging from $334 for families Direct Costs to Families with children with cystic fibrosis to $4,012 for Estimates of the costs to families directly families of children with cancer.18 associated with childhood disability not only vary with the type and severity of disabilities Other studies have estimated the direct costs being investigated but are very context of caring for children with a broad range of specific: the monetary costs incurred by disabilities, including children with a special families depend on the availability of health health care need. On average, these estimates and social care benefits, which change over are much lower than those cited above time and across jurisdictions. A comparison because they include less severe disabilities of estimates reported in different studies is than the studies discussed above. Using the difficult because of differences in the defini- 2001 National Survey of Children with tions of disability; the components of costs Special Health Care Needs (NS-CSHCN), that are calculated (for example, some studies one study reported an average annual cost of include only the costs of medical care13 while medical care (excluding insurance premiums others capture a broader range of costs and reimbursable costs) of $752 (or $620 if related to the disability); and the sample the 17.5 percent of families with no expendi- characteristics (for instance, some studies tures are factored into the estimate).19 More estimate the out-of-pocket costs associated recent estimates from the 2005–06 wave of with childhood disability only among families this survey were similar, at approximately VOL. 22 / NO. 1 / SPRING 2012 69 Mark Stabile and Sara Allin $832.20 Among low-income families in this children with disabilities in single-parent same survey, the estimated annual expendi- households had the lowest monthly child ture on medical care was lower, at about $283 care costs, suggesting that single parents on average.21 Another study used this survey were compelled to use cheaper (and perhaps to relate health insurance adequacy with lower-quality) child care. Estimated monthly reported financial problems: those with child care costs averaged $179 for single- inadequate insurance were three times more parent families with children with disabilities, likely to experience financial problems.22 $250 for single-parent families with children without disabilities, and $271 for two-parent Another study used the 2000–02 NS-CSHCN families with a child with disabilities com- to compare the direct costs of childhood pared with $225 for two-parent families with mental health problems with those of physi- healthy children. Using the 2002 wave of this cal problems.23 Caring for children with survey, Parish and her coauthors examined mental health needs was associated with a indicators of material hardship and found that greater financial burden than caring for having a child with a disability was associated children with other special needs. Although with twice the odds of experiencing hardship precise estimates are not available, among after controlling for family income, maternal those with private insurance, about 40 education, family structure, and race.25 percent of families with children with mental health conditions reported spending more than $500 out of pocket in the past year Overall, the literature that compared with about 30 percent of families with children with physical health problems estimates the direct costs (there were no differences among families to families associated with with public insurance). These estimates used matching methods to adjust for differences in childhood disability presents the samples in demographics, condition a very wide range. severity, and family structure. The authors suggest that less generous insurance coverage for mental health care may be one reason why mental health problems may be associ- Another study used the 1994–95 National ated with a greater direct financial burden on Health Interview Survey to estimate the families than physical problems. average out-of-pocket spending on rehabili- tative and mental health services.26 Annual Susan Parish and her colleagues used a spending on rehabilitation for those who sample from the 1999 National Survey of used it (30 percent of the sample) averaged America’s Families that included only low- income families to estimate child care use $1,096; for the 15 percent who had at least and costs.24 They found that children with one visit to a mental health care provider, disabilities living with single parents spent costs averaged $1,129 in one year. Using the significantly more hours in child care than 1992–94 National Health Interview Survey, did children with disabilities living with two Paul Newacheck and Neal Halfon estimated parents and children without disabilities in the costs of childhood disability on the single- and two-parent households. However, child’s activities, on the education system (as 70 THE FUTURE OF CHILDREN The Economic Costs of Childhood Disability measured by days lost from school, estimated findings.30 Using a broader definition of at 27 million), and on the health system.27 disability, Newacheck and Kim found that Children with disabilities reported three out-of-pocket expenditures on health care times the rate of physician visits of children were twice as high among the 15 percent of without disabilities (8.8 physician contacts children with a special health care need than compared with 2.9 contacts) and had signifi- among otherwise healthy children ($352 cantly higher rates of hospitalization (11.4 versus $174), and that expenditures were percent compared with 2.8 percent) and days highly skewed toward a small share of the spent in a hospital in a year. Translated to disabled children.31 the national level, these estimates amount to an additional 26 million physician contacts Overall, the literature that estimates the and 5 million hospital days annually attribut- direct costs to families associated with child- able to childhood disability. Another study hood disability presents a very wide range. estimated total medical costs for children These estimates depend on the measure of with and without attention-deficit/hyper- disability that is used, the types of costs that activity disorder (ADHD) by drawing on are included in the estimate, and the popula- administrative data of medical and disability tion that is sampled. The studies all point to claims for beneficiaries. The study reported higher direct costs for families with children that employees with a child diagnosed with with disabilities than for other families. Not ADHD had annual average medical expen- only do the estimates of direct costs vary by ditures of $1,574, significantly higher than disability status, they also vary considerably the average $541 in medical expenditures within families with disabled children; studies incurred by other employees.28 consistently point to a significantly skewed distribution of expenditures, in particular in Newacheck, Moira Inkelas, and Sue Kim medical costs, among families with children estimated the patterns of health care utiliza- with a special health care need. The direct tion and expenditure for children with monetary costs may be the smallest com- disabilities using data from the 1999 and 2000 ponent of costs to families, however, given editions of the Medical Expenditure Panel a range of indirect costs that are associated Survey (MEPS).29 Families with disabled with children with disabilities. children, who accounted for 7.3 percent of the sample, paid an annual average of $297 Indirect Costs out of pocket for health care, substantially Several studies provide evidence about the more than the $189 yearly average paid by correlation between childhood disability and families with healthy children. However, the maternal employment in a sample of families proportion of out-of-pocket spending to total at a point in time. The majority of these stud- health care costs was lower for children with ies focus on the probability that a mother is disabilities, at 11 percent, than for those employed as a function of predicted wages, without, at 28 percent. The researchers also regional economic measures, availability of found that the distribution of total and other sources of income (such as husband’s out-of-pocket expenditures was highly income), receipt of benefits (such as social concentrated among a small proportion of assistance, or benefits for the disabled child), disabled children. Analyses of data from the mother’s health, child’s health and age, and 2001 and 2002 MEPS reported similar other socioeconomic factors such as maternal VOL. 22 / NO. 1 / SPRING 2012 71 Mark Stabile and Sara Allin education. Some studies also look at hours reduction of fifteen hours a month in time of work, and others also control for whether worked (equivalent to $77 a month in and how much the mother worked before the forgone income at the minimum wage at the birth of her child. time of the study, or $81 after accounting for the reduced probability of employment). These studies consistently find negative asso- ciations between child disability and mother’s As the theory of labor market decisions work activity.32 Mothers of children with would suggest, employment effects appear disabilities are 3 to 11 percentage points less to differ depending on the child’s medical likely to work, and the effect is larger (13 to expenses and the caregiving time required. 15 percentage points) if the child is severely When the child’s illness is associated with disabled. The negative effects of child dis- high medical costs, married mothers are ability on maternal employment are not 25 percent, and single mothers 5 percent, always statistically significant among single more likely to be employed than mothers mothers.33 Some studies estimate the labor whose child costs more in terms of time. market effects on mothers of children with In this situation, married mothers work 19 specific diseases such as spina bifida, Down percent more hours, whereas single mothers syndrome, asthma, and ADHD.34 work 5 percent more hours. Having a child with a time-intensive condition significantly One study that used the 1997 Survey of reduces the likelihood of employment by 41 Income and Program Participation found percent and the number of hours worked by that child disability reduced employment 38 percent among single mothers, but the significantly among both married and single effects are not significant for married moth- mothers, but only among mothers of children ers.38 These findings point to the challenge in certain age groups (ages zero to five for of measuring child disability in a way that married mothers and ages six to fourteen for disentangles the potentially opposing effects single mothers). The magnitude of the effect of monetary costs and time costs of disability was smaller than that for the mother’s own on employment. disability status, however.35 Using earlier data from this survey (1986–88), another study Challenges in Measuring Indirect Costs found a negative but insignificant effect of Several important methodological challenges childhood disability on the likelihood of a make it difficult to measure with certainty mother being employed.36 the indirect costs associated with child dis- ability. The first challenge relates to the Among welfare recipients, having a child with difficulty of establishing causation. Poorer a severe disability was estimated to reduce families are more likely to have a disabled the probability of a mother being employed child; therefore, it is difficult to distinguish by 15 percentage points. Being in poor health between the effect of having a child with a herself had a similar effect, while having any disability and the effects of other correlated child under six years old reduced her employ- measures of socioeconomic status and human ment by 11 percentage points.37 Moreover, in capital (such as maternal education and fam- this same study, among mothers who worked, ily income) on maternal employment.39 For having a severely disabled child in the instance, if mothers with disabled children household was associated with an average are less likely to work than other mothers, 72 THE FUTURE OF CHILDREN The Economic Costs of Childhood Disability this difference could be related to lower and maternal employment.43 Finally, one maternal education or other obstacles to study draws on the Fragile Families and employment that are unrelated to the pres- Child Wellbeing Study to estimate the effects ence of a child with a disability.40 Moreover, of poor child health on paternal, as opposed the mother, or family, may have characteris- to maternal, labor supply, an indirect cost tics that are unobserved and that affect both that has received very little attention in the her work activity and the likelihood of having literature.44 a child with a disability. For example, there may be genetic or environmental causes Karen Norberg uses the National of child health that also affect the mother’s Longitudinal Survey of Youth (NLSY) to health and subsequently her probability of estimate the timing of mother’s employment being employed. Another potential problem after a child’s birth as a function of child is that some mothers who would not have disability risk factors at the time of birth worked in any case might use the health of (children were considered “high risk” for their child to justify not working. All of these disability based on prematurity, intrauterine problems might cause an analyst to overesti- growth defects, congenital defects, and mate the effect of child disability on maternal length of child’s hospitalization at birth); employment. maternal reports of early childhood develop- ment; and maternal and family background There are additional methodological chal- characteristics assessed before the child’s lenges that receive varying degrees of atten- birth.45 The mother’s past work history was tion in the literature. One relates to the the strongest predictor of her employment difficulty of accounting for the dynamics of after the child’s birth, but child health also child rearing and employment: as children influenced the decision to work: mothers of age, the caregiving burden falls for parents high-risk infants were 13 percent less likely of healthy children relative to parents of than other mothers to begin working at any disabled children.41 Another challenge results interval, and 55 percent less likely to work at from small sample sizes given the low inci- all in the first five years. dence of many forms of childhood disability. Several studies have used some promising To better account for the correlation between strategies to address these challenges. socioeconomic status and childhood disability, and to control for unobserved maternal char- Panel Data Methods. One way to disentangle acteristics that might simultaneously affect a the effect of having a child with a disability mother’s labor market activity and the health from the effects of other correlated factors of her children, Norberg compared siblings is to follow families over time, that is, to to each other (using a fixed-effects model).46 use “panel data.” We have identified several The results showed that mothers were about studies that make use of panel data to assess half as likely to have returned to work within the relationship between childhood disability five years after the birth of a high-risk infant and maternal employment.42 Another study than after the birth of a healthy sibling. uses panel data to examine the effect of hav- ing a disabled child on mothers’ and fathers’ Peihong Feng and Patricia Reagan use health, where reduced health could be one random-effects models and the NLSY to esti- causal pathway between children’s disability mate the contemporaneous effects of child VOL. 22 / NO. 1 / SPRING 2012 73 Mark Stabile and Sara Allin disability on maternal employment.47 While three bed days in the past month). A single they are able to control for some aspects of mother with a child with severe asthma had a unobserved maternal characteristics that are 10 percentage point reduction in employ- constant over time and that may affect both ment compared with mothers of healthy childhood health and maternal employment, children. Using the panel nature of the data the authors do not exploit the panel nature of to estimate the effects of asthma on transi- the data to consider the timing of the effects. tions out of full-time employment, the They found greater labor market disruption researchers found that a single mother who among mothers with an asthmatic child than had a child with asthma was twice as likely to among mothers with a child with another leave full-time employment over a two-year type of disability, perhaps because of the epi- period than a similar mother whose child did sodic nature of asthma. Mothers of children not have asthma. They found no differences with asthma were more than twice as likely as among married women. mothers of children with other disabilities to be unemployed. Another study modeled the likelihood of a father being employed one year after a Elizabeth Powers found that the estimated child’s birth as a function of the child’s health, effect of childhood disability on maternal controlling for the father’s employment status employment was smaller when she used at the time of the child’s birth as well as for panel data than when she used data for a characteristics of the father, the mother, and single point in time.48 Using two years of the family.50 They found that fathers of chil- data, Powers tested whether relative work dren in poor health (using a definition meant effort was reduced over time by the addi- to capture severe health shocks at the time tion of a childhood disability among families of birth) were 4 percentage points less likely with a stable family structure. She found that to be employed one year later. Fathers were work reductions were statistically significant less likely than mothers to change their work for single mothers (a reduction of 16 to 20 status after the birth of a child in poor health. percentage points in the likelihood that a nonworking mother would start working, and Raising a disabled child may have a direct a reduction of between three and five hours influence on maternal employment, such worked if she was working), but not for wives. as reducing the time available for work, but child disability also may have an indirect Nazli Baydar and her colleagues used the influence on maternal employment through MEPS to analyze the effects of childhood effects on maternal health. Peter Burton asthma on maternal employment.49 They and his coauthors drew on the Canadian reported that having a child with asthma National Longitudinal Study of Children reduced the odds of full-time employment by and Youth from 1994 to 2000 to estimate 30 percent and part-time employment by 26 the long-term effects of having a child with percent. A married mother who had a child a disability (defined by an activity limitation) with severe asthma had a 16 percentage point on maternal and paternal health in 2000, reduction in the likelihood of being employed after controlling for previous health status (a child was deemed to have severe asthma if and other family and sociodemographic the mother reported that the child suffered characteristics.51 They found that having a “less than good” health and had more than disabled child in the household increased the 74 THE FUTURE OF CHILDREN

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