The relationship between poverty and risks associated with childhood disability were explored. I examined some recent findings in various states regarding people who have remained dependent on Temporary Assistance for Needy Persons for support and the national prevalence studies of disability among children, derived from the National Longitudinal Transition Study and the National Health Interview Survey. Implications were identified. Recommendations for action include expanding access to health care and quality early-childhood care for these at-risk children, promoting the use of behavioral health services, lowering eligibility standards, and recruiting more actively to increase income maintenance through Social Security Income (SSI) benefits for children with disabilities. Recommendations were also made about securing vocational training for mothers who are long-term recipients of cash benefits through public assistance.
Editor in charge: Steven J. Taylor
Forty years ago, Americans discovered poverty amid affluence through the writings of Michael Harrington. The Other America (1962, 1969) had an impact on public policy during the interventionist and liberal Kennedy and Johnson administrations. Harrington's work made visible a problem on a human scale, one that has not gone away. If we fast forward to the year 2000, researchers who analyzed data from the National Longitudinal Transition Study and annual National Health Interview Surveys have more precisely established poverty as a root cause for increasing the likelihood that children will be born with or acquire disabilities (Fujiura, 1998; Fujiura & Yamaki, 2000; LaPlante & Perrin, 1998). Following welfare reform, some recent studies of the remaining recipients of cash assistance—now called Temporary Assistance for Needy Persons (TANF) also identified a disproportionate number of parents with mental health and behavioral disorders (Sweeney, 2000). Temporary Assistance for Needy Persons calls for work requirements for recipients in exchange for time-limited benefits. States were given a fixed allocation of funds based on past census of welfare recipients, and any future rise and fall in the number of applications for welfare in each state were not to be factors leading to adjustments in funding. My purpose in this policy analysis is to explore the relationship between contemporary poverty as an environment for the proliferation of childhood disability, using a variety of data sources in the public policy literature.
Some additional poverty and family policy background is needed before these issues are addressed. A brief history of income distribution and redistribution during the past 3 decades is required in order to more fully understand the limits to interventions to end poverty or mitigate its effects. Further, the new federal–state policies that constitute welfare reform to provide fuller background on the condition of the poor at the end of the last century is discussed.
Income Distribution Over the Past 3 Decades
The welfare reform law of 1996 limited to 60 the number of months a family could receive cash assistance from federal funds. Assuming personal responsibility was considered a major way of reducing the welfare rolls. Yet a significant secular trend occurred in the same decade and held great promise for ending poverty in America. Starting in 1991, this country experienced the greatest economic expansion in our history, eclipsing the gains made in the 1960s. Who has benefited from this boom? According to the work of economist Levy (1998), those families with incomes over $100,000 dollars have increased from 6% of all families in 1973 to 10% of all families in 1996. This constitutes an expansion in this income bracket of 67% over 23 years. These income bracket comparisons are presented in Figure 1 in 1997 dollars to adjust for inflation.
If we look at the other end of the distribution, the news is not nearly as good. The percentage of all families with incomes under $10,000 has increased from 6% in 1973 to 8% in 1996, an increase of 33% (Levy, 1998). The rising tide of good times has not lifted all boats. Therefore, there are more families living under the federal poverty level at the end of the 20th century than in the beginning of the second Nixon term of office. The next income bracket, $10,000 to $20,000, which includes those near the poverty line as well as those below it, increased at a lower rate, creating a percentage point change, when the family income distribution brackets are compared.
Low income is rarely ignored in advanced industrial societies. Public policy professionals in most modernized countries attempt to reduce the impact of poverty through a variety of entitlements, comprising a “safety net” for the poor. Is it possible that income transfers, tax credits, and in-kind benefits, such as food stamps and Medicaid, mitigate some of the effects of low income for most families with incomes below the poverty line? A 1998 international comparison shows that 11.7% of families in the United States still remain extremely poor following post-tax transfers (Kenworthy, 1998). In the United States, public policy gets about half of those under the federal poverty level out of poverty. Other countries try even harder, boosting a greater percentage of their poor above the poverty line. As can be seen in Table 1, relative poverty rates remain higher in the United States than in 15 countries with similar standards of living.
Welfare Reform and Its Consequences
Relative poverty also varies within the United States. The change from the right column to the left column in Table 1 does not take into account state differences on eligibility for Medicaid or the amount of cash assistance provided. Income transfers and access to Medicaid are not uniform in all parts of the country. Despite the national welfare reforms brought by TANF, states can be remarkably different in their generosity when it comes to providing cash assistance and other entitlements beyond the designated federal limits. Medicaid eligibility, as is the case in Alabama, may end with earnings as low as 22% of the federal poverty level. A poor working parent in that state is twice as likely to be uninsured as a parent who is unemployed (Primus, Rawlings, Levin, & Porter, 1999).
Throughout the country, 46% of working parents with incomes below the federal poverty level had no health insurance in 1997. According to 1997 data, 26% of poor children were uninsured as compared to 17% of all children (Schoen & DesRoches, 1998). This Commonwealth Fund report found that access to a regular source of care through primary health care is lower for children without insurance than for those with coverage. Access to health care is particularly important for children with disabilities or developmental lags. In a recent study, Czajka and Kimball (1999), using national survey data, estimated that at different points in the late 1990s, from 1.5 to 4 million uninsured children may have been eligible but did not participate in Medicaid. Lack of insurance may also affect a pregnant woman's access to prenatal care, creating the risk of failure to identify potential harm to the fetus.
Temporary Assistance for Needy Families, through its work requirements, has also encouraged or pressured families to leave state welfare rolls; and for the first time, most entitlements have been disaggregated from cash assistance. The end of cash assistance does not mean that the poor lose legal rights to monkish benefits. Despite their low incomes former welfare families are still, for example, entitled to food stamp benefits, but they may no longer have the same access they previously had when all entitlements were bundled. Some states have elaborate application forms that may discourage parents from applying. or they may not be informed of their right to food stamps because they are out of the public assistance loop. This drop in enrollment for food stamps is a cause for concern. Some eligible families are not getting food stamps after they drop off welfare. According to national data analyzed by the Center on Budget and Policy Priorities (Primus, Rawlings, Levin, & Porter, 1999).
In 1995, 88% of poor children received food stamps, but only 70% did so in 1997. Inadequate nutrition may be related to failure to use food stamps to enhance the purchasing power of low-income families. Access to necessary service supports and economic transfers may be an outcome of indifferent state program implementation, and it may impact differently on different families.
The acquisition of paid work, in sum, has not meant that all the poor are doing better. The average income of the poorest 20% of female-headed families fell $580 in 1998, even when monkish benefits were counted (Primus et al., 1999). Entitlements remain important to reduce poverty.
Differential Impact on Families of Welfare Reform
To what extent are the families that fail to receive all their entitlements different from other families? Those parents still receiving cash assistance, or who have lost jobs, despite programs to promote training and employment, may constitute a special population. There is some suspicion among welfare experts that those parents who remain at the lowest end of the poverty spectrum are more likely to be less capable or have disabilities and/or other medical conditions than those who have either climbed out of the poverty income bracket or have moved up toward the near-poor brackets.
Even before TANF and the introduction of time limits for federal support, the booming economy was reducing welfare rolls from the Aid for Families of Dependent Children (AFDC). In a four-county California initial stratified sample of approximately 15,000 single- and two-parent welfare recipients conducted in 1993–1994, Meyers, Brady, and Seto (2000) found that:
between one fifth and one quarter of the families who were in or had recently left welfare had a disabled or ill mother or child; about half of these families (10 to 12 percent of the welfare population) had a disabled child. (p. vii)
With a subsample of over 2,000, these researchers examined the intersection of childhood disability and welfare—or how poor families dealt with expensive children. Families with a child who had a disability were more likely to remain on welfare rolls than were those not caring for a child with a disability. Quite apart from lost opportunities to work, parents with a child who had disabilities and was living at home who had access to Medicaid and SSI had a lower risk of hardship than did those who were not eligible for these entitlements or who did not apply. Material deprivation was partially offset by SSI, which also enabled families to obtain private care. Medicaid enhanced access to needed health services, including various ancillary benefits such as occupational, physical, and speech therapy. Loss of welfare benefits often meant a loss of cash assistance as well as a loss of Medicaid coverage for children with disabilities.
In a more contemporary policy paper based on a compilation of state studies, there is evidence that parents remaining on public assistance toward the end of the last decade may present special medical and behavioral health problems. Sweeney (2000), from the Center on Budget and Policy Priorities, a liberal Washington-based think tank, summarized several recent studies from different states about parents with disabilities and other health conditions who have a connection with TANF. He found evidence that a significant proportion of parents who receive or have left TANF have disabilities or health conditions that may affect their ability to succeed in the workplace if appropriate supports are not in place.
Roughly one fourth to one third of current TANF recipients have a serious mental health problem, including major or clinical depression, posttraumatic stress disorder, and general anxiety disorder. Substance abuse problems ranged in different states from 2% to 20%, although the survey questions concerning drug and alcohol use varied widely.
Approximately one fifth of those who left TANF and were not working also had mental impairments.
Two states—Kansas and Washington—also administered intelligence tests to current recipients. About one fifth to one quarter of TANF recipients had IQs of less than 80.
Between one fifth and one third of recipients in three state studies were found to have learning disabilities.
Upwards of 20% of current recipients had physical disabilities that limited their ability to work.
Additional evidence from these studies of former TANF recipients suggests that these mental health and behavioral health conditions interfere with the parents' capacity to hold onto jobs or, perhaps, to be able to follow the newly established state rules and guidelines for former TANF recipients. When these disability and health-related barriers to working are combined with other barriers (e.g., low education [no high school diploma]) or little work experience), the probability that women with children will work decreases sharply when compared to mothers without disabilities or health problems. The more barriers a mother presents, the less likely she will be working. In a study conducted in Michigan, Danziger et al. (1999) found that women with seven or more barriers, out of a possible 14, had only a 5.6% probability of working at least 20 hours.
Are long-term TANF recipients with disabilities, behavioral disorders, and health conditions less likely to meet the demands of parenting? Sweeney (2000) suggested that conditions such as posttraumatic stress syndrome or clinical depression might prevent a parent from being able to coordinate child care arrangements, which would allow her to work or attend vocational training programs.
Poverty and Childhood Disability
A similar association between poverty and childhood disability has been reported recently in the Proceedings of the Fourth National Disability Statistics and Policy Forum—Trends in Disability Prevalence and Their Causes and the 19th annual report to Congress on the Implementation of IDEA (Office of Special Education and Rehabilitative Services, 1999). The 19th annual report to Congress was based on the National Longitudinal Transition Study. Its data showed that 68% of pupils in special education live in households where the income is less than $25,000 per year versus 39% of the general population of youth. Many of the deficits that interfere with learning are acquired early in life by poor children. Poverty has been associated with low birth weight, with a sequel of higher incidence of learning disabilities, hyperactivity, emotional problems, mental illness, neurodevelopmental problems, and visual and hearing impairments. These deficits are further compounded by children from low-income households missing more days of school, showing patterns of underachievement, and having high drop-out rates from high school (Office of Special Education, 1999). In the Proceedings, epidemiologist Fujiura (1998) noted that there is a skewed distribution of disability risk within the United States.
Ethnic and racial minorities and the most vulnerable—children and single parent families—are disproportionately affected. Over the last two decades, 25 to 36 million Americans lived at or below the poverty level. Of the 15 million children under poverty in 1995, 5 million were black and 4 million were Hispanic. A majority of these are in female single-parent households. (p. 23)
This statement must be viewed with some caution. The demographic changes of the past 2 decades suggest—but do not prove—causality in the epidemiology of disability. Yet, there have been strong trends in the prevalence of disability in the 1990s; directionally consistent changes have been noted by epidemiologists who study national data sets. There has been a substantial increase in the growth of limitations of major activities among children.
Among those under 18, the rate of limitation increased for boys from 5.6% in 1990 to 7.9% in 1994. For girls, the rate increased from 4.2% to 5.6%, a 33% increase. This translates to 1. 5 million more children limited in 1994 than in 1990. In comparison, Social Security's rolls grew by about .6 million children. So, again, we see a larger population increase in disability among children (LaPlante, 1998, p. 1).
Unlike the prevalence of disability among adults, which tends to cluster within a few conditions, there are fewer common disabilities in children. Moreover, chronic conditions are rare among children, despite the increases noted by LaPlante (1998). Yet a few disabilities tracked over the past decades show sharp increases. Attention deficit hyperactivity disorder (ADHD), along with asthma, are both associated with poverty and have increased in prevalence during the last decade. An influential developmental pediatrician, Perrin (1998) has suggested that “the dynamic relationship of early childhood with the environment in which children live has tremendous implications for long-term disability, especially for the prevention of secondary disability ” (p. 16).
Fujiura and Yamaki (2000), in their sophisticated analysis of data derived from the annual National Health Interview Survey (NHIS), conducted between 1983 and 1996, have also found that childhood disability is increasing. Moreover, they discovered a disproportionate prevalence of disability among families identified as below the federal poverty level and in single-parent households. After controlling for poverty, they found no additional risk associated with racial or ethnic status.
The covariation between poverty and disability has been identified in numerous research reports cited by Fujiura and Yamaki (2000). What they were able to do in their recent analysis of the NHIS data was to demonstrate that with an increase in the percentage and number of families with children living in poverty from 10.8% in 1973 to 16% in 1997, there is a concomitant increase in the prevalence rate of children with disabilities. In addition, trends summarized from 1983 to 1996 point to a connection between poverty and disability.
Key themes apparent from inspection of 1983 versus 1996 date in Figure 1 are (a) the proportion of American children living in poverty increased significantly in the past decade, (b) the greatest concentration of poverty is found among single-parent households, and (c) each of these trends is exacerbated in households with a child who has a disability. (Fujiura & Yamaki, 2000, p. 191). they concluded their article by calling for an extensive dialogue about family policy and income inequity in the United States. In the remainder of this paper, I seek to pick up the torch and open this dialogue.
There are two types of recommendations that I want to make in reference to responding to disability among a low-income population. The first type provides a structure that makes it possible for families with children who have disabilities to materially provide for their offspring and maintain access to appropriate health benefits. Unrestricted cash assistance through SSI, as shown by Meyers et al. (2000), permits parents to provide needed equipment, supplies, and babysitters. This research team also offers some significant recommendations, which follow, for helping these families (pp. 78–81). Although not every family will spend their monthly checks on such items, SSI cash distributions are simple and inexpensive to administer compared with detailed eligibility determinations and efforts to seek greater accountability. Because SSI eligibility usually triggers Medicaid eligibility, these two programs provide an appropriate safety net for low- and moderate-income families with children who have disabilities. TANF cash assistance should make allowance for the presence of children with disabilities and the extra expense that they impose on families. Eligibility for TANF and food stamps should also make accommodations for the presence in the family of a child who requires more attention. Therefore, work or school attendance, now part of the bargain parents must make in order to receive public assistance, should be adjusted to take into account the additional time constraints imposed on parents by children with special health care needs and/or disabilities.
In this study of California's recent and continued welfare recipients, Meyers et al. (2000) pointed out that when both the mother and the child have disabilities, or when there are two children with disabilities in the family, then reliance on welfare is overdetermined. There are several steps that must be taken by policymakers to create more targeted responses to these long-term TANF recipients and former recipients. These next steps should be based on needs assessments of the population that has been subject to welfare reform efforts.
Poverty poses both biological and environmental risks to children that result in disabilities. Research is needed to compare current and former TANF recipients with respect to the prevalence of physical, behavioral, developmental disabilities, and mental health problems. State officials need to make sure that those persons who have left public assistance continue to have access to health care through Medicaid or other forms of public or private health insurance.
Mothers on welfare roles, compared to those who have managed to get off and stay off public assistance, are themselves at a higher risk of disability, perhaps because they themselves have grown up under the same biological and environmental circumstances as their children. Research is needed to identify any health problems that have not been recognized by health-care providers but are common among long-term TANF recipients.
Researchers need to determine to what extent the availability of health services is able to mitigate the barriers presented to TANF-supported families when the parents or children are identified with serious chronic illnesses or disabilities. Further, policymakers should use these studies to (a) help determine how to expand access to health care and quality early child care for these children and (b) provide health care, behavioral health services, and vocational training for mothers.
Even when welfare roles are cut sharply, in an era when government tax revenues are up, due to an expanding economy, if nothing is done for those families left behind on TANF, poverty earns a quiet victory. Periods of economic recession may find some mothers losing public assistance and becoming homeless without appropriate service interventions. Further, their children may not receive appropriate remediation and, therefore, become needy adults. Harrington (1969) in an updated edition of The Other America, referred to this cyclical quality as the culture of poverty. In order to see and break the cycle, we need to have a fully textured assessment of what is becoming an increasing proportion of the temporary assistance population.
NOTE: Portions of this paper were presented at the annual meeting of the International Association for the Study of Intellectual Deficiency, Seattle, WA, August 2000. The author thanks Herbert J. Cohen, three anonymous reviewers, and Steven J. Taylor, the editor of Mental Retardation, for extraordinarily helpful criticism.
Author:Arnold Birenbaum, PhD, Professor of Pediatrics and Associate Director, Rose F. Kennedy Center for Excellence in Developmental Disability Education, Research and Service, Albert Einstein College of Medicine, Bronx, NY 10461. ( firstname.lastname@example.org)