Appendix D
Legislation to Support Positive Outcomes for Children with Disabilities
SUPPLEMENTAL SECURITY INCOME PROGRAM: SOCIAL SECURITY ACT OF 1935
Prior to the Civil War, no large-scale state or federal government financial assistance programs existed to prevent threats to citizens’ economic security. By 1910, 90 percent of Civil War veterans were receiving pensions to offset loss of wages due to death, disability, or advanced age, and these pensions remained as survivor benefits to widows and dependent children (SSA, 2017). Among nonveterans, social security programs remained scarce. One of the first attempts to rectify poverty among children was the creation of a “mother’s pension,” a precursor to the Aid to Families with Dependent Children program, and by 1920, 40 states were offering modest stipends to cover basic survival costs for children in poverty (DeWitt, 2010; Skocpol, 1992). Following the stock market crash of 1929 and the subsequent Great Depression, President Roosevelt’s Second New Deal introduced the Social Security Act of 1935, and an omnibus spending bill creating seven financial assistance programs was passed with majority support (SSA, 2017). Programs that addressed the needs of children and youth with disabilities included the Aid to Dependent Children program (Title IV), the Grants to States for Maternal and Child Welfare program (Title V), and the Public Health Work program (Title VI).
Through most of the 20th century, Social Security benefits were expanded to cover dependent family members and provide death benefits; however, disability benefits were much slower to be implemented (DeWitt, 2010). In 1956, Congress authorized disability benefits for citizens aged
50–64 by a narrow vote. Age restrictions on disability benefits were abolished in the 1960s so that young adults could receive Social Security benefits if their disability was severe enough to prevent employment. “Disability” was redefined operationally from a condition “of long continued and indefinite duration” to one of “twelve months or longer, or expected to result in death” (DeWitt, 2010). Federally funded, state-managed Social Security programs remained autonomous in determining who qualified for disability benefits, what the payment levels should be, and whether to impose conditions on the aid recipient1 (SSA, 2017).
Individual states were responsible for assigning value to socially weighted variables related to disability, which led to inequity among states regarding who was eligible and the amount of payments to eligible individuals. The federal government assumed responsibility for administering disability benefits in 1972, and further extended benefits to children under age 22 through passage of the Social Security Amendments Act of 1972,2 thus creating the modern Supplemental Security Income (SSI) program (DeWitt, 2010). The SSI program was intended as an economic security measure of last resort for low-income people with disabilities, among other groups.
Depending on where children claim residence, they may be impacted by laws that limit SSI eligibility. For instance, children who live abroad where their military parents are stationed qualify for SSI (but not Medicaid), whereas children from nonmilitary families who reside outside of the United States for a calendar month forfeit their eligibility for benefits (SSA, 2017). Children who immigrate to the United States with their family are classified under their sponsor’s deemed income for the first 5 years of residency, regardless of the relationship between sponsor and child, which renders an inestimable amount of children ineligible because they exceed income thresholds.
COMMUNITY MENTAL HEALTH ACT OF 1963
On October 31, 1963, President Kennedy signed the Community Mental Health Act (Public Law 88-164)3 into law with the intent of shifting resources from large institutions to smaller community centers, thus allowing individuals with mental health impairments to seek and receive treatment while living at home or in the local community. Under the new law, the federal government provided grants to local communities (or “catchment
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1 For example, some states mandated that a relative had to declare responsibility for a Supplemental Security Income (SSI) candidate to receive benefits (SSA, 2017).
2 Social Security Amendments Act of 1972, Public Law 603, 92nd Congress (October 30, 1972).
3 Also known as the Mental Retardation and Community Mental Health Centers Construction Act of 1963.
areas”) for the construction of community mental health centers (CMHCs) that provided prevention, assessment, diagnostic, and treatment services under the supervision of the National Institute of Mental Health (Sharfstein, 2000). The legislation divided the United States into 3,000 catchment areas of approximately 75,000–200,000 residents, with the intent that each catchment area would ultimately have a CMHC (Sharfstein, 2000). To receive federal grant money, CMHCs were required to provide more extensive services than those to which many communities had had access in the past, such as inpatient services, outpatient services, partial hospitalization, emergency response, and mental health education services. Throughout the 1970s, requirements for more services were added to the CMHC guidelines, including mental health services for children, rehabilitation services, and substance abuse treatment (Sharfstein, 2000).
By providing community-based care, CMHCs allowed people with mental health impairments to live and work in their communities while receiving necessary care instead of having to rely on distant and massive institutions. The community mental health services model led to rapid “deinstitutionalization” (also termed “dehospitalization”), in part as the result of advances in psychotropic drugs that allowed for easier mental health treatment at the local level. The goal of building 1,500 new CMHCs was not attained, however, and the legislation failed to provide long-term funding for maintaining the CMHCs, particularly in areas with less financial capacity to replace decreasing federal funding for this purpose.
Unforeseen consequences also arose from the Community Mental Health Care Act. To discourage further negative media attention and cut costs, many state-run institutions were closed without funds being redirected toward community-based care. CMHCs did not become the source of universally accessible mental health services in local communities, and patients who had been turned out of closing state institutions sometimes became homeless or incarcerated after losing access to mental health treatment. In 1977, First Lady Rosalynn Carter chaired a reassessment of the CMHC system, and an effort was launched to re-fund local mental health services through the Mental Health Services Act of 1980. This effort was undermined during the 1980s when the Reagan administration repealed the Mental Health Services Act of 1980 and restructured CMHC funding from categorical grants to state block grants. These actions curtailed the role of the federal government in providing mental health services, and the status quo was not revisited until deliberations over the provisions of the Patient Protection and Affordable Care Act (ACA) began in the late 2000s.
SOCIAL SECURITY AMENDMENTS OF 1965 (TITLE XIX: MEDICAID)
In July 1965, two expansive health care programs were signed into law to guarantee that certain vulnerable populations would have access to health care without compromising their economic security. Title XIX of the Social Security Act provided states with the option to receive federal funding for providing health care services to low-income children, their caretaker relatives, the blind, and individuals with disabilities (Klees et al., 2010). This federal funding program, known as Medicaid, was managed through the Social Rehabilitation Service (SRS) Office to help the most vulnerable members of society improve their health and to prevent medical emergencies and resulting personal bankruptcies.
REHABILITATION ACT OF 1973 (SECTION 504)
Section 504 of the Rehabilitation Act of 1973 (45 C.F.R. Part 85) is a civil rights law that prohibits discrimination against an individual with disabilities, among other groups, participating in or seeking admission into a federally funded program or activities hosted by the executive branch or U.S. Post Office on the basis of his or her disability. Its charge goes beyond preventing discrimination to encouraging employment and integrating people with disabilities into all areas of community life. As a legislative text, Section 504 does not address or allocate funding for the protections it guarantees to individuals with disabilities. The intended outcome of Section 504 is that agencies and businesses that do business with the U.S. government work harder to integrate people with disabilities into mainstream programs and activities.
Compliance with Section 504 laws and subsequent legislation is overseen by the U.S. Department of Education’s Office for Civil Rights (OCR). If organizations, including schools, fail to comply with Section 504, individuals may bring suit alleging that Section 504 protections were improperly enforced. Several major shortcomings of the text of Section 504 pertaining to ambiguous and complex situations were addressed with the 1990 passage of the Americans with Disabilities Act (ADA).
EDUCATION FOR THE HANDICAPPED ACT
The Education for All Handicapped Children Act (EAHCA or EHA) of 1975 (Public Law 94-142) amended Part B of the Education for the Handicapped Act of 1966 by requiring public schools receiving federal funds to accept and provide an education and one free meal per day to children with mental and physical disabilities. EAHCA was the first piece
of legislation to mandate that public schools create individualized education programs (IEPs) for children with disabilities that resemble the education structure for children without disabilities to the fullest extent possible. A second key component of EAHCA was its directive for public schools to establish administrative procedures through which parents of children with disabilities could participate in the decision-making process and negotiate or dispute decisions made for their child through in-house procedures, with judicial review as a final alternative to dispute resolution. Prior to the passage of EAHCA, parents had been authorized to proceed directly to judicial review if they felt their child’s legal protections had been violated. In other words, EAHCA introduced management, auditing, and mediation procedures to reduce costly litigation expenditures and more directly involve parents in the IEP process.
AMERICANS WITH DISABILITIES ACT OF 1990 (ADA)
The ADA, passed by Congress in 1990, provided civil rights protections for individuals with disabilities and required public entities to administer services “in the most integrated setting appropriate to the needs of qualified individuals with disabilities,” providing such individuals opportunities to live, work, and receive services in mainstream society (DOJ, 2011). Under Section 504 and the ADA, a person is considered to have a disability if he or she has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment, or is generally regarded as having such an impairment.
ADA protection covers individuals with disabilities from birth to death. The law applies to virtually every entity except churches and private clubs, regardless of whether it receives federal funding. Title I of the ADA forbids segregation of individuals with disabilities in their place of employment;4 Title II requires integration of adults and children with disabilities into state and local government entities and schools;5 and Title III requires businesses and organizations that serve the public to facilitate access for individuals with disabilities to the greatest extent feasible without assuming an undue burden.6 The “integration mandate” of the ADA is a key feature that received renewed attention in 2011, when President Obama launched the “Year of Community Living” initiative and directed the Department of Justice to renew attention on enforcing the Olmstead decision, which ruled that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the ADA. Section 504 and the
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4 ADA § 12182(b)(2)(A)(i).
5 ADA § 12182(b)(2)(A)(ii).
6 ADA § S1282 (b)(2)(A)(iii).
ADA were written to ensure that otherwise qualified individuals do not find themselves restricted from achieving personal goals because of their disability. For instance, if a student is not otherwise qualified to participate in a sport, the school is not discriminating against that student when it denies participation (Smith, 2001).
PERSONAL RESPONSIBILITY AND WORK OPPORTUNITY RECONCILIATION ACT OF 1996 (PRWORA)
PRWORA (Public Law 104-193) was enacted as one of a number of laws intended to restrict eligibility for SSI benefits based on such personal characteristics as disability type, immigration status, or compliance with the justice system. PRWORA altered the services and programs landscape for children with disabilities in two major ways: by redefining the criteria for SSI eligibility and replacing the long-standing Aid to Families with Dependent Children (AFDC) program with the Temporary Assistance for Needy Families (TANF) program.
PRWORA redefined child disability as “a medically determinable physical or mental impairment or combination of impairments that causes marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”7 PRWORA further limited the pool of eligible SSI applicants by mandating that SSI beneficiaries either be U.S. citizens or fall under a “qualified alien” category and meet specific eligibility requirements, such as having special refugee status (SSA, 2017). PRWORA also required that individuals ruled eligible for SSI during childhood be reassessed for eligibility using the more stringent adult disability criteria on reaching majority (Davies et al., 2000). PRWORA legislation also prohibited SSI eligibility for any individual during a month in which that individual is a fugitive felon, fleeing prosecution, or violating state or federal conditions of probation or parole.8 Additionally, any SSI recipient determined to have a substance abuse problem that contributes to the disability diagnosis (i.e., without the drug addiction or alcohol dependency, the individual would not have a qualifying disability) is required to seek treatment to continue receiving benefits.9
As noted, PRWORA also replaced the existing AFDC program with the new TANF program, which provides a temporary cash subsidy to low-income households, with eligibility rules and benefit allowances varying
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7 42 U.S.C. 1382c.
8 Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Public Law 193 § 202, 104th Congress (August 22, 1996).
9 60 C.F.R. 8151, § 416.935 (February 10, 1995).
across state and local offices. Unlike its predecessor, TANF includes work requirements and severely limits the duration of time for which individuals are eligible to receive cash benefits (ASPE, 2014). The application procedures for SSI and TANF are not integrated; therefore, information from an application for TANF cash benefits cannot be used automatically to apply for SSI benefits (ASPE, 2014). Reauthorization of TANF under the Deficit Reduction Act of 2005 eased certain legislative requirements related to individuals with disabilities. For example, the reauthorization excluded adults caring for a family member with disabilities from work requirements imposed by PRWORA.
BALANCED BUDGET ACT OF 1997
The Balanced Budget Act of 1997 established a new child health block grant worth $20.3 billion to help reduce the number of uninsured low-income children (Schneider, 1997). This block grant had important implications for Medicaid; specifically, it gave states an incentive not to reduce existing Medicaid eligibility levels for children, as doing so would risk losing eligibility for the new federal child health block grant funds. The act encouraged states to use the new block grant funds to expand statewide access to health care for children. The Balanced Budget Act of 1997 gave states the option of creating a separate health care program unrelated to Medicaid to expand child health care coverage. As an entitlement program, Medicaid requires that any child deemed eligible for the program receive services, whereas the new programs were not mandated to be entitlement programs and could establish waiting lists (Schneider, 1997). The result was the nonentitlement Children’s Health Insurance Program (CHIP).
TICKET TO WORK AND WORKFORCE INCENTIVES IMPROVEMENT ACT (TWWIIA) OF 1999
TWWIIA (Public Law 106-170) created the Ticket to Work and Self-Sufficiency program (commonly known as Ticket to Work), which allows SSI and Social Security Disability Insurance (SSDI) beneficiaries who are disabled or blind to access employment services, vocational rehabilitation services, or individualized supports needed to secure stable employment and reduce their dependence on cash benefit programs. Ultimately, the goal of TWWIIA is to reduce the number of individuals who are dependent on cash benefit programs. As written, TWWIIA allows individuals with disabilities to access Medicaid or Medicare coverage while maintaining employment; in other words, employed individuals no longer need fear losing health insurance eligibility as a consequence of earning income (SSA, 2013).
Section 201 of TWWIIA regulates the provision of health care services
to workers with severe disabilities by establishing a Medicaid “buy-in” plan that is accessible to employed individuals with disabilities so that they can secure affordable, adequate health care coverage (CMS, n.d.). Under Section 201, individual states can offer health insurance coverage to a “basic coverage group” consisting of individuals aged 16–64 who, without their earned income, would meet eligibility criteria for SSI or SSDI benefits (CMS, 2000). A second eligibility group created under Section 201 is the “medically improved group,” which covers individuals whose disabilities have lessened in severity. In total, 46 states provide some type of Medicaid buy-in allowed under TWWIIA (CMS, 2017).
DEVELOPMENTAL DISABILITIES ASSISTANCE AND BILL OF RIGHTS ACT OF 2000 (DD Act)
Signed into law in 2000, the DD Act (Public Law 106-402) specified goals for citizens with disabilities to live independently, be productive and contributing members of society, and be included in all facets of community life. To accomplish these goals, the act allocated funds for research and pilot testing of innovative service delivery models for meeting the needs of individuals with intellectual or developmental disabilities (ACL, 2017). In addition, the DD Act allocated federal assistance to states and nonprofit agencies for the purpose of serving individuals with developmental disabilities and their families.
The DD Act established several categories of programs to assist people with intellectual or developmental disabilities in achieving integration goals. The law outlined a variety of organizations devoted to assisting individuals with developmental or intellectual disabilities. These organizations include state councils on developmental disabilities that are tasked with addressing needs through advocacy and capacity-building efforts. The DD Act also created state protection and advocacy systems (known colloquially as “P&As”), tasked with advocating for the personal and civil rights of individuals with developmental disabilities (ACL, 2017).
Another major component of the DD Act was funding for University Centers for Excellence in Developmental Disabilities in Education, Research, and Service (UCEDDs)—a nationwide network of independent but interlinked centers representing an expansive national resource for addressing issues, finding solutions, and advancing research related to the needs of individuals with developmental disabilities and their families.
INDIVIDUALS WITH DISABILITIES EDUCATION ACT OF 2004 (IDEA)
The most recent updates to IDEA allocated formula grants to states for providing special education, as well as discretionary grants for state education agencies and other administrative/policy-setting bodies (ED, 2017). The IDEA renewal also authorized the secretary of education and the secretary of the interior (for Native American schools) to release formula grants for providing special education to school-aged children, youth, and young adults enrolled in secondary school and to provide transition services to youth with disabilities who are at least 16 years old. Transition services mentioned in the IDEA 2004 legislation included vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, and community participation (ED, 2017). IDEA further outlined a number of procedural requirements for transition planning, including identifying required members of the IEP team, inviting the student, and identifying other agencies that may be invited to send a representative to an IEP meeting where postsecondary goals and transition services will be considered.
In December 2008, the U.S. Department of Education issued additional IDEA Part B regulations to clarify and strengthen existing regulations related to areas of special education such as parental consent, hearing rights, and state monitoring and enforcement. In 2016, the U.S. Department of Education issued final regulations outlining a standard approach for determining whether significant disproportionality based on race or ethnicity is occurring in the state and its districts.10
PAUL WELLSTONE AND PETE DOMENICI MENTAL HEALTH PARITY AND ADDICTION EQUITY ACT OF 2008 (MHPAEA)
MHPAEA (H.R. 1214-117) is a federal law that generally prevents health insurance plans providing mental health or substance use disorder coverage from imposing benefit limitations or higher co-payment structures for mental health services relative to physical health services. MHPAEA was amended by the ACA to apply not only to group insurance plans but also to individual health insurance coverage purchased through the federal marketplace. In other words, insurance companies can no longer set lifetime limits on accessing mental health services. The legislation codified substance abuse disorders as mental health disorders, meaning that insurance is required to cover substance abuse treatment.
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10 34 C.F.R. Part 300.
CHILDREN’S HEALTH INSURANCE PLAN REAUTHORIZATION ACT OF 2009 (CHIPRA)
CHIPRA significantly improved children’s health insurance coverage by consolidating eligibility and administrative processes, expanding CHIP eligibility to low-income pregnant women, giving states the option of providing health insurance to immigrant children and pregnant women who are legal residents of the United States (but previously were excluded from coverage), and requiring states to cover pediatric dental care (CMS, 2017).
PATIENT PROTECTION AND AFFORDABLE CARE ACT OF 2010 (ACA)11
The ACA introduced a fundamental transformation of the health insurance system in the United States through sweeping provisions that changed prior notions of shared health care responsibility. The ACA legislation provided states with funding and technical assistance for building a state health care system that provides adequate and continuous health care coverage. Several components of the law directly impact children and youth with disabilities and their transition into adulthood—including prohibition of health care rescissions, prohibition of lifetime limits on essential benefits, prohibition of exclusions for preexisting conditions, and extension of dependent coverage through age 26 (Farrell et al., 2011).
The ACA introduced a major market reform by outlawing discriminatory practices toward consumers with preexisting conditions, such as denying their coverage or charging more because of such a condition. Eliminating premium hikes for individuals with preexisting conditions was intended to encourage all Americans to purchase adequate health insurance coverage. To protect individuals from costly illnesses and future preexisting conditions, as well as reduce expensive payouts by insurers, the ACA mandated that a set of preventive services and immunizations be covered by all insurance plans. Health insurers could no longer revoke coverage if necessary health care services exceed a specified cost ceiling or void coverage for minor application omissions (Farrell et al., 2011).
A major component of the ACA was the establishment of health care exchanges to give small business owners and individuals lacking health insurance through their employer a place to purchase coverage. For lower-income individuals, subsidies were made available through the exchange in the form of tax credits or subsidized premiums (Farrell et al., 2011). For the first time, children were also granted the right to remain on their
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11 “The law was amended by the Health Care and Education Reconciliation Act on March 30, 2010. The name ‘Affordable Care Act’ is generally used to refer to the final, amended version of the law” (HealthCare.gov, n.d.).
parents’ insurance plan until age 26, thereby providing continuity of coverage throughout secondary school for most young adults. At their physician’s discretion, young adults could also choose to remain with their pediatrician beyond majority—a process made simpler by remaining with their parents’ insurance plan beyond the transition years. The ACA also allocated $5 million to continue Family-to-Family health information centers, which support families of children with disabilities and provide a platform for information sharing (Farrell et al., 2011).
WORKFORCE INNOVATION AND OPPORTUNITY ACT (WIOA)
WIOA was signed into law in 2014, with the aim of fostering cooperation between the education and employment sectors to create a more inclusive workforce from 2015 to 2020.12 It was intended to improve the quality of the workforce and earnings of workers, with special funding earmarked to improve outcomes for out-of-school youth and youth with the most severe disabilities. WIOA amended the landmark Rehabilitation Act of 1973 (discussed earlier) to allow vocational rehabilitation agencies to use federal funds, as well as state, local, or private contributions, to coordinate pre-employment transition services with local education agencies.
WIOA mandated the establishment of an American Job Center System to coordinate employment referrals, skill acquisition, and education programs in the same physical space.
A second major change enacted by WIOA was to extend the length of time an individual with the most significant disabilities could receive pre-employment training services from 18 to 24 months, with special emphasis on training participants in integrated work settings (ED, 2018). Pre-employment transition services that were identified in the bill include job exploration counseling, work-based learning experiences (including in-school and after-school opportunities or internships), counseling on postsecondary education programs, workplace-readiness training, and instruction in self-advocacy.
WIOA placed responsibility for administering the American Job Centers under the supervision of workforce development boards (WDBs) appointed by state governors; some municipalities have also appointed local WDBs to help address challenges unique to the community and engage local stakeholders/investors in workforce development initiatives. WIOA further required that at least 50 percent of board members (of both state and local WDBs) be business representatives; that at least 20 percent be “workforce representatives,” such as labor union representatives, worker advocates, or representatives from apprenticeship programs; and that the remaining
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12 29 U.S.C. 701 et seq.
30 percent be appointed at the discretion of the state or local government. In addition, all job centers were mandated to provide workspace for 11 preexisting federal employment partner programs (e.g., JobCorps, Native American programs) to foster interagency collaboration, with the end goal of decreasing unemployment among populations currently underrepresented in the workforce, including youth and young adults with disabilities.
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