"I just need help ..." were the words of a young woman, Hope, (1) as she perched on a chair in the welfare office. Hope was waiting for her name to be called for the administrative hearing on her challenge of the local social services office decision to terminate her welfare benefits. I met Hope through my work with a legal services organization that focused on providing legal services to individuals experiencing problems applying for and keeping welfare benefits. Hope received welfare benefits for more than five years since welfare reform and was repeatedly enrolled in the same work activity program. At the program, she received daily newspaper job listings or waited for one of the few computers to be free for internet job searches. The "job coach" at the work activity program told Hope to apply for every job listed, regardless of Hope's qualifications. Hope was frustrated. Each time Hope was referred to the work activity program, she attended until her child suffered a flare-up of his chronic medical conditions. When her child was ill, Hope stayed home from the program because her child care provider would not administer medications. Each time, her absences from the program eventually caused her to be sanctioned and her welfare benefits cut off. With an ill child and no welfare benefits, other crises would build, and Hope would return to the local social services office. This time, Hope was tired of the cycle of reapplying and being sent to the same work activity program repeatedly, so Hope filed an administrative appeal.
The local department of social services' position was that it offered no programs suitable to Hope's needs and had no resources to help Hope find appropriate child care. At the hearing, Hope related her experiences to the administrative law judge. Hope explained how the work activity program did not meet her needs or her family's needs because her child's health problems were never accommodated or addressed. Hope recounted each absence, her child's medical symptoms, her calls and visits to the doctor, her calls to her "job coach" and welfare case manager to explain her absences, and the lack of response from her caseworker. (2) Hope pleaded for a plan that had some chance of success, either through appropriate day care or through a program that would address how she could balance her roles as a worker and a parent.
Hope was appealing the closing of her welfare case. She needed funds to pay her rent and avoid eviction. When she spoke of help, though, she needed more than the reinstatement of the cash welfare benefit. She sought help with her competing roles as a caregiver and worker, help locating a child care program that would care for the medical needs of her son, and help finding a flexible work program with real training. Hope won the appeal, and her welfare benefits were reinstated retroactively. Since the local department of social services had not identified a flexible work activity program or appropriate child care, the judge found Hope should be exempt from work activities until such time as those resources were available. The barriers Hope identified--access to appropriate child care and useful work activities--were shared by many of the mothers (3) I represented. Each of the mothers caring for children with disabilities or chronic health conditions wanted to engage in work activities (4) that were flexible and helped develop skills while allowing them to meet their children's needs.
Eleven years after welfare reform began, Temporary Assistance to Needy Families (TANF) is changing. After years of attempts to reauthorize TANF, in February 2006, Congress passed The Deficit Reduction Act of 2005 (DRA). (5) The DRA addressed budget areas of mandatory spending on some entitlement programs, including Medicaid, Medicare, student loan programs, and TANF. (6) The DRA reauthorizes the TANF program at the current funding level through the 2010 fiscal year. (7) The DRA also authorized the Department of Health and Human Services to promulgate regulations clarifying the work activity categories, determining who should be counted in calculating work participation rates, and creating a new penalty for states that fail to establish and maintain procedures to verify work participation data. (8) In June 2006, the Department of Health and Human Services issued Interim Regulations that, among other changes, establish the "work-eligible individual" as the new standard for calculating the work participation rate. (9) As defined, the "work-eligible individual" excludes parents caring for a disabled family member living in the home. (10)
This Article proceeds in three parts. Part I provides an overview of welfare reform since the 1996 passage of the Personal Responsibility and Work Opportunity Reconciliation Act (11) (PRWORA) and an overview of some of the main requirements related to work activity requirements and caretakers for disabled and chronically-ill children. Part II explains the DRA, changes to TANF addressed in the Department of Health and Human Services' Interim Regulations, and the new definition of the "work-eligible individual." The section examines the exclusion of caretakers of individuals with disabilities from the definition of "work-eligible individual" and the consequences of that exclusion for parents caring for a child with disabilities.
Part III discusses the core message that this exclusion of caretakers of individuals with disabilities sends: that mothers caring for children with disabilities are not employable. This Article argues that this message is an admission that TANF cannot end the dependence of needy families on the government because what society fails to provide through TANF is what society fails to provide for all families. The solutions for these families' needs are not found within the TANF system. TANF does not work for these families because paid employment cannot work for these families until government, communities, and employers commit to workplaces and institutions that support the needs of all families.
II. WELFARE REFORM, TANF, AND WORK PARTICIPATION
It has been a over a decade since PRWORA repealed the entitlement program called Aid to Families with Dependant Children (AFDC). (12) From their inception, welfare policies in the United States reflected our assumptions about who should work and what work was. (13) A brief review of the programs leading up to TANF illustrate that work requirements were not new ideas in the landscape of welfare.
The AFDC program, originally called Aid to Dependent Children, was enacted in 1935 as part of the Depression-era Social Security Act programs. (14) Originally, the program conferred payments to "fit" single mothers to allow them to raise their children without assuming the wage-earning role. (15) Generally absent from the category of fit mothers were members of racial minorities. (16) In the 1960s, AFDC program caseloads grew as restrictions were removed. (17) In 1967, the Work Incentive Program was enacted. (18) It added an income disregard to keep the first thirty dollars in earnings, as well as provisions for training and employment and required participation if day care was available. (19) However, the law provided no additional funding, and the requirements were not mandatory on the states. (20)
In the 1980s, efforts began to reduce the welfare program. Congress enacted cuts in federal funding and gave states some flexibility to experiment with work training programs. (21) In 1988, the Family Support Act authorized the Job Opportunities and Basic Skills program for AFDC recipients. (22) The program was meant to provide job search assistance, education, work experience, and vocational training. (23) From 1992 to 1995, forty states applied for federal waivers to experiment with work training programs. (24) The work participation rate requirement was lower than what would later be required under the PRWORA. (25) Further, given the federal funding cuts and state budget conditions, many states failed to start or maintain programs or support services, such as child care. (26) Overall, the Job Opportunities and Basic Skills program led states to experiment with a variety of policies, including more stringent work requirements, family benefits caps, and time limits. (27)
In 1996, Congress enacted the PRWORA and replaced AFDC and Job Opportunities and Basic Skills program with TANF. (28) The new TANF program ended the entitlement to welfare, used block grant funding, and gave broad discretion to states to create and administer their welfare programs within broad statutory requirements. (29) The requirements included provisions that all recipients must go to work within two years of entering the program and a five-year lifetime assistance limit. (30)
B. Work Participation Under the PRWORA
The PRWORA's central focus is the work participation requirement for recipients of public assistance. The PRWORA imposed several obligations on states. (31) The PRWORA'S focus on work requirements imposed severe hardships on parents of children with terminal illness or disability as well.
1. Work Participation Requirements
Under the work participation requirements, a certain percentage of each state's adult-headed TANF cases were required to participate in allowable work activities for a minimum number of hours each week. (32) States were also required to ensure that every recipient was engaged in a work activity as soon as the state determined the individual was able or after twenty-four months of beginning benefit receipt, whichever was earlier. (33) The work participation rates of each state were determined based on the number of TANF families with an adult receiving assistance who was participating in federally defined work activities. (34) The law required states to meet a participation rate of 50%, with a separate standard of 90% participation for two-parent families. (35) States could avoid penalties associated with not meeting participation rate goals, however, through the caseload reduction credit. (36) The credit provided a reward to states that reduced their caseload or diverted individuals from TANF. (37) The interaction between the caseload reduction credit and the work participation rate resulted in all states meeting their work participation requirement between 1996 and 2002. (38)
States could count the participation of an adult TANF recipient if the adult was engaged in allowable activities for a minimum number of hours. (39) Work participation included eight core allowable work activities: unsubsidized employment, subsidized private sector employment, subsidized private sector employment work experience, on the job training, job search and job readiness assistance, community service programs, vocational education training, providing child care services to an individual who is participating in a community services program, and three additional activities. (40) The additional activities consisted of obtaining job skills directly related to employment, obtaining education directly related to employment, and maintaining satisfactory attendance at a secondary school or course of study leading to a General Equivalency Diploma. (41) TANF applicants and recipients were required to participate in one of these core activities for at least a minimum number of hours weekly. (42) In the year 2000 and following, a single-parent family with a child under age six must participate for an average of twenty hours per week and all other families must participate for an average of at least thirty hours per week. (43)
2. State Work Participation Policies
For many states, work participation requirements translated to policy choices and programs that stressed "get a job, any job"--the work first model where the emphasis was on moving parents to immediate engagement in a work activity. (44) While all states have a process for assessing, assigning, and requiring work activities, there is variation in what the process looks like in each state and sometimes within local jurisdictions in the state. (45) In each state, the initial step of assessment (46) and development of a work plan can vary widely. (47) Assessment processes that fail to examine potential barriers, such as medical conditions of household members, domestic violence, etc., may result in referrals to work activities that are not appropriate. (48) The nature of work supports offered by states also varies. For example, child care subsidies differ, (49) as do earned income disregards. (50) Likewise, the penalties differ. Families who do not comply (51) with work activity requirements in some states lose a portion of their TANF benefit, which is referred to as a partial sanction. (52) In other states, the entire benefit is terminated (full-family sanction). (53) In some states, failing to comply with a work requirement can lead to permanent ineligibility for TANF benefits. (54)
3. Outcomes of Work Participation Requirement Changes
Once the work participation requirements were imposed on states, overall welfare caseloads sharply declined, with fewer families applying for TANF and more families leaving the welfare caseload. (55) The drop in welfare caseload alone is not the complete picture. Among families receiving welfare, participation in work and work related activities increased and some families left welfare for work. (56) The number of families that left welfare for work and received government funded child care, food stamps, and health insurance increased from 1997 to 2002. (57) The types of jobs they exited welfare for, however, were low paying. (58) Since 1997, the most common reason in many states for closing of a welfare case was not failing to fulfill the work requirement, but sanctioning for various reasons (59) and other administrative reasons. (60) For example, in Maryland, a review of cases closed from October 2003 to September 2004, found that out of all of the TANF cases subject to the work requirement that were closed, 25.3% closed with the code "income above limit," and 24.3% closed for work sanctions. (61) Caseload decline for parents who have left welfare but are not in paid employment is not an indicator of welfare reforms' success. Given that state welfare agencies have approached welfare policy in a multitude of ways, the common approaches that were used in addressing the distinct needs of parents caring for children with disabilities under TANF should be explored.
4. Parents of Children with Disabilities and Work Participation Requirements
The management of work and family responsibilities is a delicate negotiation for most parents. (62) The rate of women's entry into the labor force has grown (63) and family roles are changing. (64) Mothers, however, continue to be viewed as having the responsibility for the care of children and for the arrangement of alternative care methods when the mother is not available to care for their child. (65) Some major concerns for a parent arranging child care are finding care that fits the child's needs, location, availability, and cost. (66) For low- and no-income parents, making these arrangements is increasingly complex. (67)
When there is a disabled or chronically-ill child in the household, the primary caretaker is more likely a woman. (68) With or without child care, the child with a disability or chronic illness affects a mother's income production. (69) An increased need for caretaking (70) is associated with a greater likelihood that the parent will be less engaged in the work force. (71) If the child has a disability or chronic illness, the arrangements are even more complex, as parents have to assess to what extent the child's medical condition can be cared for by the child care provider. (72) It may be more difficult to find and keep an appropriate child care placement (whether informal care by a relative, family child care homes, or child care centers) when the child has a disability. (73)
Even if employment is found, parental time is needed to respond to children's symptoms, administer treatments, and attend medical visits. (74) Low paying jobs typically offer less flexibility, both in scheduling of hours and …