Nikki Fordey, MSW, MA
Why Policy, Analysis, and Advocacy Matter for Social Workers
When I decided to pursue social work as a career and started my MSW program I knew I wanted to help people. I imagined myself someday with an office of my own, able to counsel people and help them see light where previously there was only darkness and pain. But as I got into the field and started clinical practice, I soon realized that there are limits on what change can be initiated on an individual level. Macro work, policy work, advocacy, community organizing, activism – these pursuits are also so desperately needed to help the people social workers serve. When working with someone with a disability, it matters if they have access to affordable care and resources. It matters if the government has decided that they have civil rights equal to that of a non-disabled person. It matters if the court of public opinion has been able to recognize its ableism and overlooking the needs of all.
I am a disabled cisgender bisexual white woman. I am also a licensed clinical social worker and substance use disorder clinician. I am a progressive public policy advocate. I am a wife. I am a dog mom. I am so many things. But I list disabled first. Why? Because it is at times the most important thing for someone new to my life to understand. I have a chronic illness that affects multiple systems and will progress with more and more impairment over time. Without many of these disability-related policies, my livelihood, future, and very survival would be in immediate jeopardy.
Therefore, these policies are not just words on a page, laws from long ago that you should memorize for a test and then forget. These polices are the foundation and context in which disabled people fight for survival every day. We must understand where we’ve come from, what has and has not worked before, if we have any hope in continuing to make progress. We have come a long way but there is still so much more work to do. That’s where all of you come in.
If you’re sitting there thinking “well this doesn’t matter to me, I don’t think I’m going to work with someone with a disability” I’m here to tell you that chances are you will. At some point in your career, you will have disabled clients. As we saw in Chapter 1 on disability social work principles and concepts, 27% of the U.S. adult population is disabled. Some disabilities are visible, and you will know. But others are invisible, and it will be your knowledge and ability to connect with genuine empathy and understanding that will make the difference, for your client to disclose their disability status and how it impacts their mental and physical health.
As a social worker you have the responsibility to meet your clients where they are – which in many cases will include a disability of some sort. You will be more effective in your clinical work with an understanding of the barriers that disabled people face in our society and the changes still needed for equity and universal accessible design.
Listen to disabled people. Listen to what they need, what they want, what they desire, where they are struggling but also where they are thriving! This will be elucidated further in the last chapter in this textbook on disability resistance movements, but you will be well served if you start your general policy analysis from the perspective that it is disabled people who know best what they do and do not need.
The following sections detail key disability-related policies in our history, grouping them as chronologically as possible, by topic. While this chapter, mainly due to space and resource constraints, discusses mainly federal policies, it is important to remember that disability-related policies exist at the federal, state, local, and organizational levels. When policies at different levels are in conflict, it is the policy that provides the most access and is most generous to the disabled person that should be followed (Mid- Atlantic ADA Center, 2012).
Preoccupation with ‘Deserving’ Poor and Reliance on Segregation as Standard Procedure
In the 1800s, disabled people were mostly kept hidden and separate in institutions, where they were treated like abhorred objects incapable of independent thoughts and desires (Anti-Defamation League, 2022). According to the Anti-Defamation League (2022), “the ‘purification’ and segregation of persons with disability were considered merciful actions, but ultimately served to keep people with disabilities invisible and hidden from a fearful and biased society” (para. 3). It was not a question of if a disabled person would be institutionalized and segregated, but when – when the individual’s family and locality (town) was no longer able to provide adequate care and the disabled person became a ward of the state. As disabilities often impact a person’s capacity for traditionally productive work, and being productive was seen as the only measure of one’s use for an interdependent society, it was standard to remove the “undesirables” and keep the freedom for the “able-bodied” or not-yet disabled.
However, a cultural shift was afoot when a new group of disabled people had to be reckoned with that had more power and could command a higher quality of treatment due to their perceived sacrifice: Civil War veterans. Quickly after the Civil War began, young people with decades of life left to live were returning to everyday civilian life with significant disabilities acquired on the battlefield or otherwise related to military service. The General Pension Law of July 14, 1862 (12 Stat. 566) provided for a monthly benefit to be paid to any veteran who was unable to perform manual labor due to a disease or disability acquired while in service, or to the widows and/or other dependents of a deceased veteran (Skocpol, 1993). Logue and Blanck (2008; 2020) have documented, however, the racial discrimination that Civil War veterans and their families from the North faced after the war. Black widows, in particular, faced large hurdles in applying and being approved for Civil War pensions. These obstacles included low literacy, due to laws forbidding slaves from learning how to read and write, and challenges to the legitimacy of their marriages conducted when both persons were enslaved (Logue & Blanck, 2008). While the pension laws were written race neutral (i.e. black disabled veterans and surviving families were legislatively entitled to equal financial compensation as white disabled veterans and dependents), the way they were implemented was not. Many black disabled veterans and their dependents faced intrusive questioning and harsh judgment for not conforming to white pension assessors’ biased views of family units and gender roles (Pinheiro, 2021). There are documented cases of black widows losing their benefits retroactively if accused of “inappropriate behavior” such as sex work or having a child out of wedlock (Pinheiro, 2021). Therefore, while the Civil War pension laws were life changing for many, it is important to remember that not all who deserved the assistance were able to easily access it.
The theme of “deserving” or having to earn financial assistance was at the heart of disabled Civil War veterans’ pensions. According to Handley-Cousins (2016), “the image of the amputee became symbolic of the sacrifice of war” and while those disabled by the war were revered and held in special regard, this did not translate to people with disabilities unrelated to war and even disabled war veterans did not see societal shifts to include their changed needs and limitations (p. 223). The focus was on finding a way for the disability to be overcome or minimized (such as prosthetics, rehabilitation). If this was not possible, it became acceptable for these noble heroes to utilize financial support from the government as part of their payment for their sacrifice. They were deemed the “deserving poor,” having lost productive capacity in the name of the greater good – protecting and preserving the republic. The disabilities incurred as a result of war were seen as the literal price of freedom and future for America (Handley-Cousins, 2016).
There was a more concrete cost for Civil War pensions, particularly as more accurate information was disseminated about the protocol for applying, who was eligible, and the potential amounts that could be recovered. In 1861, prior to the Civil War pensions, the annual cost for war pensions was around $1 million in today’s dollars, used to support approximately 10,700 veterans and widows of previous conflicts (Skocpol, 1993). However, by 1866 the annual expenditure swelled to $15.5 million to support 126,722 veterans and/or their families (Skocpol, 1993). Further, the Pension Arrears Act in 1879 (20 Stat. 469) allowed eligible veterans or their dependents to apply for and receive in one lump sum the entire pension amount they would have been entitled to if they had applied when the disability or death originally occurred. Each year there was a federal government surplus (which existed from 1866 to 1893), the Civil War pensions continued to increase in cost and eligibility requirements were broadened (Skocpol, 1993). Veterans advocated for more benefits and politicians responded favorably to those who could help garner more votes and facilitate the politicians maintaining their station through future electoral periods.
What began as a Civil War pension for the totally disabled or deceased turned into America’s first old-age pension, as the 1890 Dependent and Disability Pension Act (26 Stat. 182) stated that if you served 90 days or more in the (Union) military with an honorable discharge and became disabled at any point after service and were unable to perform manual labor you were eligible for a pension, explicitly including old age as a disability (Skocpol, 1993). Therefore, any military veteran became eligible for a pension when they were no longer capable of manual labor, either due to old age or a disabling factor earlier in life. These expansions of eligibility and circumstances deemed worthy of financial payout from the government showed that the U.S. Congress was capable of providing direct financial assistance to those it deemed worthy of support. In this case, it was not the disability identity that reigned supreme, but rather veteran status. Despite the program ballooning to over 40% of the federal government’s annual expenditure in 1893, agreements were kept with payments continuing into recent times to widows and dependents of Civil War veterans who became disabled before death (Skocpol, 1993).
The experience with Civil War pensions influenced many future laws regarding financial support from the government. Significant opposition to direct payments has grown as the U.S. economy slows and the federal government has routinely had to rely on deficit spending and accumulating debt to meet its legislatively mandated obligations (Handley-Cousins, 2016). Scrutiny of applications for assistance has continued to increase, and unsubstantiated claims of widespread fraud have multiplied, all in the shadow of the expensive history of Civil War pensions (Logue & Blanck, 2020). As social workers, it is important to remember that eligibility restrictions and gatekeeping of services, especially financial assistance, have roots that trace directly back to the U.S.’s first widespread pension laws (Skocpol, 1993). The question of who is deserving and who is not continues to plague our social service agencies. Social workers should examine their own biases about poverty and question if the systems they support are assessing need based on financial distress, moral worthiness, or something in-between. At this time, post-Civil War, many politicians were questioning how to respond to disabled peoples’ needs without bankrupting the nation and strategizing ways to minimize the impact of deficiencies on the populace’s ability to produce (Skocpol,1993). Disability was seen as something to cure or eradicate, especially if it could be done inexpensively.
Following World War I, a focus on rehabilitation was strengthened, emphasizing returning disabled war veterans to work in whatever way possible and dis-incentivizing a war pension. According to Logue and Blanck (2020), injured men back from the front lines were directed that their best hope of a future was to overcome their impairment and re-enter the workforce. It is also important to note the overall changes in common employment opportunities that took place between the Civil War and WWI – primarily a shift from farming in rural communities to industrial labor in the cities (Social Security Administration, n.d.). This changed the end goal of rehabilitation from full physical recovery to shades of grey in-between, could a returning solider be taught some skill, some strength, some way to be productive in a capitalist market? If so, that was his destiny. “However limited in scope the approaches were, the adoption of veteran preference in federal hiring and the offering of separate workshops in soldiers’ homes were endorsements of adapting work opportunity to disability rather than the reverse” (Logue & Blanck, 2020, p. 571).
Further, “Comparison of pensions and census-listed disability suggests that disability outweighed the value of benefits in most veterans’ occupation reports. Pensioners’ inclination to resume working after joblessness implies that disability undermined occupational stability, not the will to work […] nineteenth-century Americans with disabilities wanted what their twenty-first-century counterparts want—work at a meaningful occupation” (Logue & Blanck, 2020, p. 572). The shift from conceptualizing disability as a medical condition to be pitied or ignored, to seeing disability as something that could be fixed or cured was significant. However, both of these perspectives fail to take into account the rights of the individual and perpetuate the segregation of those with disabilities who are unable or unwilling to reintegrate into traditionally-sanctioned productive work styles.
Focus on Income and Health Benefits for Disabled People
Research by scholars such as Katz (1996), Schlesinger (1957), and Chambers (1963) highlights the shift in colonial America in the 19th century from localized control of poverty relief initiatives to state funding for almshouses and poorhouses to confine the poor and subject them to nearly unbearable conditions in an effort to deter dependency on aid. Advances in technology and changes in available employment and the associated inconsistency of income necessitated a system of relief that recognized the risk of more modern forms of self-sufficiency. Local towns could no longer handle the responsibility of transient persons made poor when industrial sources of income disappeared. The Social Security Administration (n.d.) in an analysis of pre-social security reform society explains, “in an agricultural society, prosperity could be easily seen to be linked to one’s labor, and anyone willing to work could usually provide at least a bare subsistence for themselves and their family. But when economic income is primarily from wages, one’s economic security can be threatened by factors outside one’s control” (para. 33). The need for insurance against unemployment, including disease or disability that could affect employment opportunities, slowly became recognized by the states. Even prior to the Great Depression, the public was demanding changes in safeguards against becoming destitute.
Before the Social Security Act was implemented, financial assistance to the elderly was available via a haphazard state-level system of welfare accessible only to the most economically impoverished (Katz, 1996). These plans were not sufficient for economic independence and according to an analysis by the Social Security Administration (n.d.), “the most generous plan paid a maximum of $1 per day” (para. 70). A more uniform federal intervention was needed to provide for a financial safety net in a changing economic landscape.
Initially people were concerned about unchecked government spending, with the bloat of Civil War pensions not far in the rear review. However, according to Ikenberry and Skocpol (1987), “the Great Depression suddenly expanded the political possibilities for social welfare reforms in the U.S.; welfare capitalism and minimalist role of the federal government of the 1920s were discredited by the Depression crisis” (p. 404). The public and its politicians were eager for a balanced but effective solution. “With the coming to office of President Roosevelt in 1932, and the introduction of his economic security proposal based on social insurance rather than welfare assistance, the debate changed. It was no longer a choice between radical changes and old approaches that no longer seemed to work. The ‘new’ idea of social insurance, which was already widespread in Europe, would become an innovative alternative” (Social Security Administration, n.d., para. 72).
The Social Security Act of 1935 (Public Law 74-271; 49 Stat. 620) created an insurance system wherein workers would pay taxes now towards their economic security in the future, particularly after retirement and in old age. A graduated program was created to start helping seniors who did not have the opportunity to pay in before reaching old age, with the intent to phase out these direct grants and instead rely on current workers to fund the needs of current retirees (Social Security Administration, n.d.). Contributions kept people from believing this was welfare or a handout, and instead there was a practical method to save for the disability none of us can escape if we live long enough: old age. There were provisions left out of the 1935 Act, most important to our discussion would be disability-specific relief, that had to wait for more amendments and revisions. In the end, the passage of the act in 1935 was a necessary but not sufficient step towards financial solvency, if you could contribute (Social Security Administration, n.d.). Further amendments in 1939 added benefit payments for spouse and minor children of a retired worker and payments to the family in the event of a premature death of an insured worker. According to the Social Security Administration (n.d.), “This change transformed Social Security from a retirement program for workers into a family-based economic security program” (para. 100).
Social Security Disability Insurance (SSDI) began with an amendment to the Social Security Act in 1956 to grant assistance to disabled workers aged 50-64 and disabled adult children (Kearney, 2005). In 1960, the disability rules were changed to allow assistance to disabled workers of any age and their dependents (Kearney, 2005). These payments are from a disability trust fund, the person must meet eligibility for a disability, and they must have already been insured by their own payments or their spouse or parents’ payments (Social Security Administration, 2020). To receive SSDI payments, you must meet the Social Security Administration’s definition of a person with a disability, and you must have already been vested as an insured person in the fund, essentially that you have paid enough from working contributions to now receive payments (Social Security Administration, 2020). The amount of benefit directly corresponds to how much and for how long a worker contributed prior to becoming disabled. Individuals are able to contact the Social Security Administration directly to determine if they have made sufficient payments into the disability trust fund to qualify for benefits (Kearney, 2005).
In the 1970s, the Social Security Administration became responsible for a new program, Supplemental Security Income (SSI). In the original 1935 Social Security Act, programs were introduced for needy aged and blind individuals and, in 1950, financially needy disabled individuals were added (Kearney, 2005). These three programs were known as the ‘adult categories’ and were administered by State and local governments with partial Federal funding. In 1971, Secretary of Health, Education and Welfare, Elliot Richardson, proposed that Social Security Administration assume responsibility for the ‘adult categories.’ In the Social Security Amendments of 1972, Congress federalized the ‘adult categories’ by creating the SSI program and assigned responsibility for it to Social Security Administration (Kearney, 2005).
Payments of SSI are from general tax revenues and beneficiaries must have limited income and resources, including less than $2,000 in any liquid assets (Social Security Administration, 2020). SSI serves as a needed but not sufficient program to survive financially, and many disabled people struggle to meet monetary obligations despite receiving SSI benefits.
It is important for social workers to understand the differences between SSI and SSDI and be informed enough to assist clients in obtaining the benefits that they are eligible for and could use to improve their quality of life. Social workers can play an important role in facilitating information transfer as well as weighing out the pros and cons of each program available. It can be very confusing to parse through the Social Security Administration’s website and time consuming to get a live person on the phone depending on call volumes at your local or federal office. Properly informed social workers can help clients access accurate information and determine next steps in the process of application, acceptance, and even filing and arguing for an appeal. Income is a necessary, but not sufficient, possession for survival in our capitalist society. Disabled people are also particularly vulnerable due to health needs and complications that can arise from lack of affordable care. Depending on whether a disabled person is receiving SSI or SSDI they might be eligible for federal and/or state-run health insurance programs.
The Medicare and Medicaid Act (Public Law 89-97, 79 Stat. 286) was signed into law on July 30, 1965, by President Lyndon Johnson. “With the signing of this bill, [the Social Security Administration] became responsible for administering a new social insurance program that extended health coverage to almost all Americans aged 65 or older.” (Social Security Administration, n.d., para. 114). The architects of Medicare were purposeful in modeling the program after Social Security in which all who paid in during their working years became eligible for coverage at age 65, regardless of income level (Oberlander, 2015). The Medicare policies recognized that while older people are more likely to be in need of medical care, they were also less likely to be able to afford it based on fixed and limited incomes. “Medicare initially provided a limited benefits package focused on protecting the elderly against the acute costs of medical care rather than providing comprehensive insurance for all medical costs or covering care for chronic illness” (Oberlander, 2015, p. 122). Universal coverage for older people with benefits earned via work made for a better funded and publicly supported program (Oberlander, 2015).
In 1973, Medicare was amended to include coverage for people under 65 if they have received SSDI for 24 months, therefore disabled people younger than 65 can be eligible for Medicare depending on their circumstances. People under age 65 who are diagnosed with end-stage renal disease (ESRD) or amyotrophic lateral sclerosis (ALS) automatically qualify for Medicare upon diagnosis without a waiting period (Cubanski et al., 2016). According to Cubanski et al. (2016), “nearly one quarter (24%) of younger [Medicare] beneficiaries with disabilities had incomes less than $10,000 per year and two-thirds (67%) had incomes less than $20,000 per year, compared to 13% and 39%, respectively, of older beneficiaries” (para. 4). In addition, Cubanski et al. (2016) found that of Medicare beneficiaries younger than 65, “nearly 6 in 10 (59%) reported their health status as fair or poor and almost the same share (58%) reported having one or more limitations in their activities of daily living, compared to 20% and 34% of beneficiaries age 65 or older, respectively” (para. 6). It could be beneficial for disabled clients under age 65 to apply for Medicare coverage for at least part of their medical needs, particularly if they are low income and in poor health.
Medicare is comprised of multiple parts. Medicare Part A, reflecting the original social insurance vision, covers hospitalization costs and is funded by payroll taxes. Medicare Part B covers physician and outpatient services, and its financing comes from a combination of beneficiary premiums and general revenues. Medicare Part C, which has been added over time, allows beneficiaries to enroll in insurance plans sponsored by private companies that contract with the federal government – aka Medicare Advantage; Medicare is increasingly a hybrid mixture of public and private insurance that reflects two contrasting political philosophies within the same program (Oberlander, 2015). Medicare Part D is a more recent development that assists Medicare beneficiaries with coverage for prescription drugs (Oberlander, 2015).
Medicaid program is a partnership between the federal and state governments to provide access to health care for the poor, with each state operating its own program within federally established guidelines (Center on Budget and Policy Priorities, 2020). According to Oberlander (2015), this program was created alongside Medicare to head off any further attempts at a universal national health insurance. Medicaid as a means-tested program showed that the U.S. recognized some people could not afford to care for their health and needed government intervention, but the strict requirements made sure the message was that most people should pay for their own care and that the ‘average’ person should not expect the government to pay for them. People at the bottom socioeconomic status were provided with an opportunity for care, but would often lose coverage if they somehow did slightly improve their income in an effort to improve their quality of life. Many people had to choose between extreme poverty with some health coverage or slightly less extreme poverty with no health coverage. Additionally, the quality of the health care available for people with Medicaid is different than that available to people with private insurance plans, with more complexity and nuance on what is covered and when, how to prove need for care, and a smaller network of providers. This was significant for disabled people in the U.S. as the correlations between poverty and disability persist, therefore many Medicaid recipients are disabled. Medicaid provided a path for some to receive desperately needed care for their health concerns and the program should not be minimized for its narrow eligibility. As of 2018, one-fifth of Medicaid enrollees are seniors or persons with disabilities, and they account for nearly half of all Medicaid spending due to complex health needs (Center on Budget and Policy Priorities, 2020).
As each state is able to operate their own Medicaid program, requirements and benefits vary greatly across our nation. In order to receive federal funding, there are mandatory populations that must be covered by Medicaid – including children living below 138% of the federal poverty line ($29,974 for a family of three in 2020), most seniors, and people with disabilities receiving cash assistance via Supplemental Security Income (Center on Budget and Policy Priorities, 2020). States are permitted to widen criteria for Medicaid to cover more groups of people, but they cannot be required to do so. This can leave disabled people who are not receiving SSI without health care coverage – no matter what their income level. This is the reality in the 14 states that continue today to opt out of Medicaid expansion, despite the federal government covering 90% of expansion coverage costs (Center on Budget and Policy Priorities, 2020).
Depending on a disabled person’s circumstances, they could be eligible for Medicare, Medicaid, or both. As social workers, it is important that we understand the differences between these programs as well as the eligibility criteria for each in order to support our clients in whatever combination of coverage works for their individual needs.
The Patient Protection and Affordable Care Act of 2010 (Public Law 111-148; 124 Stat. 119) served as landmark legislation to improve access to health insurance coverage for all Americans and had particular significance to the disability community. This act served as the first time that insurance companies were prohibited from denying coverage based on a pre-existing condition and from charging disabled people more for treatment (Yee, 2015). Previously it was common practice for disabled people to be denied coverage or only offered extremely expensive coverage they could not afford, despite the fact that having a disability does not necessarily mean someone is in bad health and will need more coverage or be more expensive to cover (Yee, 2015). This legislation offered more protections to disabled people for quality and affordable health care coverage and with the removal of pre-existing conditions people with disabilities were for the first time on equal playing ground with non-disabled people for affordable health insurance plans. People with disabilities are not necessarily higher risk and therefore deserve equal opportunity for coverage. Further, this legislation eliminated lifetime benefit maximums and other limitations that disproportionately put disabled people at risk, for example a company arbitrarily saying they paid for enough care and would not cover more even if the person had medical necessity. Now, it is possible to receive individualized and as necessary care instead of constant denials and not covered expensive but needed treatments.
In addition, dependents being able to remain or return to parents’ health insurance until age 26 “[…] gives families and young adults with disabilities additional time to prepare for and get through these multiple life transitions while preserving critical medical and mental health provider relationships, as well as better coverage for durable medical equipment, assistive technology, and prescriptions than what may be available through student insurance or the employment insurance offered in one’s first few jobs” (Yee, 2015, p.18). The Affordable Care Act protected young adults and uniquely helped disabled young adults navigate difficult life transitions with some extra comfort that they could remain on their parents’ insurance plans into young adulthood minimizing disruptions in care and health.
The Affordable Care Act also codified 10 essential health benefits that all health insurance plans must offer, essentially eliminating so-called ‘junk plans’ that were not practical or did not cover needed services. These required services are: (1) ambulatory patient services; (2) emergency services; (3) hospitalization; (4) maternity and newborn care; (5) mental health and substance use disorder services including behavioral health treatment; (6) prescription drugs; (7) rehabilitative and habilitative services and devices; (8) laboratory services; (9) preventive and wellness services and chronic disease management; and (10) pediatric services, including oral and vision care (Centers for Medicare & Medicaid Services, n.d., para. 1). These categories of services are important to disabled people, but particularly the recognition of “habilitative services” deserves highlighting as this allows disabled people to receive services to learn skills in the first place, not just “rehabilitative services” which assume prior knowledge or functionality that has been lost and is trying to be regained (Yee, 2015).
Some provisions of the ACA have been struck down over time as opposition has remained constant to expanded coverage and cost, however disabled people continue to benefit from the ACA’s policies that might not have been the focus but give disabled people stronger ground from which to advocate for their health needs. Even though the ACA is a ‘newer’ development, it represents a more primitive level of policy as it addresses basic health and survival. As we progress further in disability policy, we will see the objectives multiply and flourish – moving from disabled peoples’ survival to what helps them thrive and live more full lives in our shared society.
Focus on Education and Work Services for the Disability Community
Head Start programs have served more than 36 million children since 1965, growing from an eight-week demonstration project to include full-day/full-year services and many program options (U.S. Department of Health and Human Services, 2022). Currently, Head Start grants are administered by the U.S. Department of Health and Human Services, Administration for Children and Families. Head Start programs serve over 1 million children and their families each year in urban, suburban, and rural areas in all 50 states, the District of Columbia, Puerto Rico, and U.S. territories, including American Indian, Alaskan Native, and Migrant and Seasonal communities (U.S. Department of Health and Human Services, 2022). “Head Start programs deliver services to children and families in core areas of early learning, health, and family well-being while engaging parents as partners every step of the way. […] Head Start services are delivered nationwide through 1,600 agencies which tailor the federal program to the local needs of families in their service area” (U.S. Department of Health and Human Services, 2021, para. 1). Head Start initially laid the groundwork necessary to conceptualize the importance of providing services directly to pregnant women and families with young children, including disabled children with varying needs. Head Start would become more beneficial to disabled children in the context of legislation passed federally mandating educational services to all children.
Education of All Handicapped Children Act of 1975 (EAHCA) (Public Law 94-142; 89 Stat. 773) mandated that all children in the U.S. have access to a free and appropriate public education in the least restrictive environment possible (Larson, 1985). This legislation attempted to more fully explain and provide guidance on ‘appropriate’ public education for children with disabilities, and even further define education as more than instruction, more than learning, but also preparation for future stages in life. As explained by Wegner (1985):
Free and appropriate public education includes two programmatic components – special education and related services. Special education is defined as specially designed instruction, at no cost to parents or guardians, to meet the unique needs of a handicapped child including classroom instruction, instruction in physical education, home instruction, and instruction in hospitals and institutions. Related services are defined as such developmental, corrective, and other supportive services as may be required to assist a handicapped child to benefit from special education. (p. 177–178)
EAHCA became necessary as more and more parents of disabled children were suing local school districts for not providing the education that their children needed and not accommodating disabled students’ needs (Wegner, 1985). The rift continued to grow between opportunities and quality of services provides for non-disabled children vs. those available for the disabled. Standards and policy mandates were needed for disabled children to receive education tailored to their needs.
EAHCA mandated “the development of an IEP for each handicapped child. An IEP is a written statement developed by a representative of the local educational agency, the teacher, the parents, and the child which includes a statement of educational performance, annual goals, and specific educational services to be provided” (Larson, 1985, p. 70). IEPs are a necessary, but not sufficient, tool to ensure adequate education. Rather, “the sufficiency of the child’s educational programming is to be judged by his performance in making incremental progress towards his individual educational goals” (Wegner, 1985, p. 188). The child has to be receiving some educational benefit and making some measurable progress towards the IEP goals in order for the school to meet its legislatively-mandated burden.
Of particular interest to social workers may be Wegner’s (1985) assertion that with EAHCA “[…] Congress’s overall plan [was] to ensure that all children, including seriously emotionally disturbed children in need of the full range of psychotherapeutic services, should receive those services needed to allow them to make at least minimal educational progress” (p. 219). Therefore, children with emotional concerns and mental illness are also protected as people with disabilities and educational services necessary to treat emotional problems are a responsibility of the educational institution. This can include residential or group home placement if deemed necessary for educational purposes (Wegner, 1985).
EAHCA has continued to be reauthorized and renewed since the 70s and in 1990 underwent a name change to the Individuals with Disabilities Education Act (IDEA). This shift was to make it clear in language that educational policy applies to all disabled people, starting at birth (via early intervention services) through young adulthood, and not just conventionally ‘school-aged children.’ IDEA was most recently reauthorized in 2015 via Public Law 114-95, the Every Student Succeeds Act. According to the U.S. Department of Education (2022), IDEA authorizes grants to states to provide for special education needs and guidance on what needs are required to be met by programming, and how success (i.e. needs attainment) should be monitored and measured. In addition, more of a spectrum of educational needs are considered, including mandating inclusion of a plan for transition post-school in students’ IEP. Not only are disabled students entitled by law to services from birth through age 21, but they also must have services aimed at transition to adulthood with emphasis on further education, independent living, and other long-term goals (U.S. Department of Education, 2022).
One method of providing services is utilizing the structure and assistance available with Head Start. According to the Head Start Program Performance Standards, “A program must ensure at least 10 percent of its total funded enrollment is filled by children eligible for services under IDEA, unless the responsible [Health and Human Services] official grants a waiver” (U.S. Department of Health and Human Services, 2016, p. 15). Therefore, Head Start is an important program for children with disabilities and it is written into the rules that disabled children have some priority for services and supports. This allows more disabled children to receive the services they need in the least restrictive environment.
Ticket to Work and Work Incentives Improvement Act of 1999 (Public Law 106-170; 108 Stat. 1464) created a “self-sufficiency program that would allow disability beneficiaries to seek the employment services, vocational rehabilitation services, or other support services needed to regain or maintain employment and reduce their dependence on cash benefits” (Social Security Administration, n.d., para. 134). People receiving disability benefits would receive a “ticket” to vocational rehabilitation and be able to work without losing their benefits eligibility and would also not be subject to disability eligibility reviews during this time (Social Security Administration, n.d.). Employers receive financial incentives to help vocationally rehabilitate disabled people, with the focus on returning to productive work. Participation in the program remains low, administrative costs are high, and there is not a lot of movement of disabled people off benefits as a result of their ticket to work (Social Security Administration, n.d.). However, for some disabled people this program could be the right combination of supports to help them rehabilitate and rejoin or join the workforce for the first time with a new trade or marketable skill.
Achieving a Better Life Experience (ABLE) Act of 2013 (Public Law 113-295; 128 Stat. 4010) became law on December 19, 2014. This law aims to ease financial strains faced by individuals with disabilities by making tax-free saving accounts available to cover qualified disability expenses (Social Security Administration, 2022). Disabled people can save money and have assets over the $2,000 limit (instituted by most benefit programs) and not risk losing their benefits or health insurance. To qualify, an individual must have acquired a disability prior to age 26. The disabled person has their own single ABLE account and can hold up to $100k without penalty. For the first time, public policy recognizes the added financial burden of disability and the need to save and have access to more money for disability-related expenses (ABLE National Resource Center, 2022). This can be seen as an accessibility issue when we consider the previous lack of mechanism to save money and also hold on to monetary gifts with the $2,000 limit – the ABLE Act of 2013 granted access to savings accounts on a similar playing field for people with disabilities as their non-disabled counterparts. ABLE accounts can receive up to $16,000 per year from all contribution sources, which is the maximum amount set by tax laws of what can be gifted without having to report the gift to the IRS (Social Security Administration, 2022).
Accessibility Policy and the Disability Community
The Architectural Barriers Act of 1968 (ABA) (Public Law 90-480; 82 Stat. 718; 42 U.S.C. 4151-4157) requires certain federal and federally-funded buildings and other facilities to be designed, constructed, or altered in accordance with standards that ensure accessibility to, and use by, physically handicapped people (Raffa, 1985). Standards for accessibility in design were developed by the newly formed U.S. Access Board. The law was not retroactive. The peculiarities of the law created situations where only the substantially renovated portion of the building had to be accessible, and therefore there were buildings with new accessible bathrooms that still lacked any ramp access out front (Raffa, 1985). The law helped, but enforcement was difficult and time consuming. Voluntary compliance was low, and people did not want to spend more time and money incorporating accessible standards of design into new and renovated constructions (Raffa, 1985). Only federally-funded buildings were covered by the mandate, leaving many buildings inaccessible as they were not required to be constructed with universal access in mind (Raffa, 1985). The ABA attempted to address part of a growing problem, people with disabilities literally being unable to enter buildings necessary to carry out regular life activities, but more teeth were needed to enforce compliance and mandate more types of buildings incorporate accessible design standards from the beginning.
Organizations of d/Deaf and hard of hearing individuals began thinking of accessibility in a slightly different way, not physical access – but auditory. People quickly realized that status quo communications technology was not accessible to those with hearing and speech differences, and how telephones being inaccessible kept disabled people from fully participating in public and private spaces. The teletypewriter (TTY) was used by telecommunications companies to transmit text, albeit with limited characters and speed (Strauss, 2006). As computers continued to evolve, the TTY became obsolete for this purpose and telecommunications companies moved on to devices more capable of handling large amounts of data (Strauss, 2006). TTY machines were discarded en masse. At the same time, d/Deaf engineer Robert Weitbrecht was concentrating on improving telephone access for the d/Deaf community and saw the TTY as an opportunity (Strauss, 2006). He was able to connect a discarded TTY to a modem that enabled the TTY to transmit typed text over existing telephone lines (Strauss, 2006). This allowed d/Deaf people to type their message, have it sent over telephone wires, and be received by another TTY connected to the network. With this success, volunteers took to refurbishing thousands of discarded TTYs and providing to disabled people in need of accommodation in order to have live, in real-time communication with others in different places (Strauss, 2006). Volunteers also started acting as relay operators, they would receive the TTY message and convert it from text to speech for a hearing recipient. This allowed d/Deaf individuals to connect to hearing individuals. Other devices were integral for hard of hearing people to utilize telephone communication including: amplifiers, flashing lights to bring attention to a ringing phone, and phones compatible with hearing aids (Strauss, 2006).
The Telecommunications for the Disabled Act of 1982 (TDA) (Public Law 97-410; 96 Stat. 2043) attempted to address some of the concerns from the d/Deaf and hard of hearing communities about access to and the affordability of communication devices (Strauss, 2007). This legislation, while not complete, was significant in the history of disabled people’s fight for accessibility. According to Strauss (2006), the TDA was “the first time in America’s history [that] statute acknowledged the enormous costs to society of failing to provide telephone access to people with hearing loss, recognized the failure of the marketplace to ensure disability safeguards, and declared the furnishing of this access a national priority” (p. 283).
During the 1970’s, advances in technology changed the mechanisms of telephone sets which led to lighter and more tamper-resistant phones, but created an accessibility issue for hearing aid users as the sounds transmission coils were not compatible with hearing aid receivers (Strauss, 2006). TDA mandated that telephones deemed essential be compatible with hearing aids, which ultimately fell short of advocates’ demands for universal compatibility, but did lay the ground work needed for future more far-reaching legislation (Strauss, 2006). Essential telephones were determined by the Federal Communications Commission to include: coin operated telephones, phones designated for emergency use, and phones frequently needed by hearing-impaired people (Strauss, 2006). This resulted in situations such as an individual’s workstation including a hearing aid compatible phone, but other phones in a workplace continuing to be incompatible, or hotels only needing 10% of rooms equipped with hearing aid compatible telephones leaving someone hard of hearing not knowing if they would be able to find an accessible phone while traveling. In place of universal compatibility, TDA required that telephone manufacturers clearly indicate on the outside of the packaging if the device was or was not compatible with hearing aids, to allow consumers to make an informed purchase (Strauss, 2006).
TDA also gave local telephone companies the authority to subsidize the rates of telephone services to people with hearing disabilities by utilizing surcharges to all customers (Strauss, 2006). Part of the need for subsidized rates came from the insurmountable fact that calls placed via relay systems or between TTY machines took longer to execute than voice calls due to the technology involved. The disability community was asking for a mechanism to make utilizing the telephone more affordable and argued that charging per unit of time was discriminatory as the calls took longer specifically due to one or both of the callers having a hearing disability (Strauss, 2006). It should be noted that TDA merely allowed telephone companies to choose to subsidize in this manner, it did not mandate them to do so. Many telephone companies still conceptualized telephone access for the d/Deaf, hard of hearing, and speech impaired to be “charity” and insisted it should be the government’s responsibility to pay for these services (Strauss, 2006). Therefore, TDA set the stage of future action but did not in and of itself result in widespread rate reductions.
For years after implementation of TDA, “consumers complained that the restricted scope of the existing [hearing aid compatible phone] regulations hindered their ability to lead independent lives and summon help in the event of an emergency” (Strauss, 2006, p. 293). After much advocacy, negotiation, and pressure the Hearing Aid Compatibility Act of 1988 (Public Law 100-394; 102 Stat. 976) was passed mandating that all telephones manufactured or imported to be used in the U.S. after August 16, 1989 be hearing aid compatible. Technology has continued to evolve and d/Deaf people have many options today to be connected and communicate, however it is important to know the advocacy it took to get to this point and the legacy of the discrimination faced when one merely was requesting access to what a hearing individual would utilize – in this case a working telephone.
The Telecommunications Accessibility Enhancement Act (TAEA) of 1988 (Public Law 100-542; 102 Stat. 2721) created a Federal Relay Service (FRS) within the federal government, mandating that TTY users have the same access to federal governmental offices and agencies as traditional telephone users (Strauss, 2007). The relay service allowed TTY users to connect with a TTY compatible operator who could then connect the TTY user to the office or agency desired, the operator acting as a relay of information translating between text and speech (Strauss, 2006). TAEA directed all elected federal officials to obtain TTY machines and create a directory of TTY numbers for all offices and agencies to increase access to the federal government for TTY users (Strauss, 2007). The FRS has grown over time to meet demand, expanding in 1998 to provide 24/7 service and by 2000 had over 100 relay operators fielding tens of thousands of calls each month (Straus, 2007). While the TAEA was restricted in scope to only the federal government, it did show the high demand for telephone access by persons with hearing and/or speech impairments and the changes possible by providing the accommodations needed.
The Decoder Circuitry Act of 1990 (Public Law 101-431; 104 Stat. 960) mandated that all television sets manufactured or imported into the United States with screens 13 inches or larger be capable of displaying closed captions (Strauss, 2007). For a decade individual networks and shows had voluntarily utilized closed captions, however audiences wishing to access the information needed to purchase costly decoders and then be able to integrate the device into the television set (Strauss, 2006). Decoder sales lagged greatly behind predictions given the knowledge of the size of the American d/Deaf and hard of hearing population (Strauss, 2006). Even if the program someone wanted to watch happened to be captioned, this crucial information could not be accessed without additional equipment. This led to television – entertainment, but also news, weather, sports, etc. being inaccessible to millions of people. According to Strauss (2007), “the Commission on Education of the Deaf suggested a different solution. It proposed that if all television sets were equipped internally with circuitry that decoded closed captions, the larger audiences that would be able to use this technology would create a strong incentive for the television industry to increase its captioned programming” (p. 509). After much advocacy and continued pressure on legislators, this was the solution that passed into law. The Act made it clear that the majority of Congress supported access to closed captioning for all, but further legislation was needed to make fully accessible television a reality.
By the time the Decoder Circuitry Act went into effect in 1993, most network television programming was closed captioned, but only 5-10% of cable television came with captions available (Strauss, 2006). Advocates realized that the hope of the Commission on Education of the Deaf had not been realized, greater availability of closed caption-ready televisions did not encourage all broadcasts to provide captions. After several years of continuous advocacy and negotiation, The Telecommunications Act of 1996 (Public Law 104-104; 110 Stat. 56) included “for the first time in our nation’s history, require[ment that] all broadcasters, cable operators, satellite operators, and other television programming distributors to make the vast majority of their programming accessible to deaf and hard of hearing people through closed captions” (Strauss, 2006, p. 257). While the governmental mandate was encouraging, the FCC needed to create regulations to implement the mandate and they were faced with a variety of exemption requests. Nearly every broadcaster not currently providing closed captioning tried to make the case that to do so would be an undue burden on their operations and arguments ensued about what types and timing of programming were truly of benefit to the D/deaf and hard of hearing populations (Strauss, 2006). Instead of focusing on universal access and allowing the individual to decide which program to watch, legislators and industry professionals attempted to whittle down the types of programs that would fall under the mandate (Strauss, 2006). The Act also stipulated that the mandate only applied to programming first created after the effective date of the FCC’s regulations (Strauss, 2007). The FCC issued a complex schedule of deadlines for different percentages of different types of programming to be fully closed captioned, some of these deadlines as far out as 2010 (Strauss, 2006). While Congress issued a mandate, the FCC’s regulations made significant room for exemptions from the mandate, leaving d/Deaf, hard of hearing, and other television viewers who utilized captions (English-language learners, children and others learning how to read, etc.) without access to a considerable amount of programming. Of note, the FCC’s regulations completely exempted from captioning programs broadcast in languages other than English or Spanish (Strauss, 2007). As social workers, we should recognize the bias in this blanket exemption and the negative effect on people who need captions who also communicate in other languages and would, it would follow, greatly benefit from access to programming in their native language that was captioned. There have been several acts and updates to regulations to improve the quantity of captioning available, however even in 2022 the quality of captioning can leave a lot to be desired in terms of accuracy, grammar, spelling, and appropriate reading speed. In addition, the availability of captioning on videos in an increasingly digital/online world continues to be far from universal (Espino, 2016). Accessibility difficulties persist for disabled people in online/electronic environments, as will be discussed in more detail towards the end of this chapter.
Policies Related to Civil Rights for the Disability Community
The first disability civil rights legislation was contained in Section 504 of the 1973 Rehabilitation Act (Public Law 93-112; 87 Stat. 355; 29 U.S.C. § 701 et seq). According to Davis (2015):
The spirit of the act was to shift federal assistance away from mere vocational rehabilitation and towards a more encompassing idea of improving not just job training but the overall lives of people with disabilities. Yet its lasting impact [exists permanently] in just four lines of the voluminous act. Like a magic phrase inserted into an incantation, those four lines changed the history of disability rights. In Section 504, the very last section of the last major category, a staffer inserted the following words trying to tie the act to previous civil rights legislation: No otherwise qualified handicapped individual in the United States […] shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. (p. 11)
As Rouse (1981) explains, “A qualified handicapped person is one who can perform the essential functions of the job with a reasonable accommodation. Essential functions are those that constitute the basic functions of the job. Reasonable accommodation refers to modifications which allow the handicapped employee to perform acceptably the essential duties of his or her job” (p. 201). Reasonable accommodation will be further explained in relation to the Americans with Disabilities Act (ADA), but it is important to note that the Rehabilitation Act was where this concept originated, identifying changes needed to include disabled people and requiring those alterations as a matter of law. Rouse (1981) advocated that people with a wide range of disabilities be directly involved in any renovations or reforms made to comply with Section 504, so that real needs could be asserted, and their point of view could be utilized to identify all possible barriers for disabled people to fully access the federal or federally funded building and participate as an equal in federally funded programs.
Chamusco (2017) explains that the 1973 Rehabilitation Act can trace its origins to laws in the early 1900’s focused on vocational rehabilitation for disabled people, “however, these were examples of the medical model or social pathology model of disability, both models are premised on the belief that it was the disabled person—not society or one’s physical environment—who must change” (p. 1287). Section 504 instead focused on society and other people needing to change to accommodate disabled people and recognizing disabled people’s inherent civil rights in federally funded spaces and programs. As Mayerson (1991) explained, the Rehabilitation Act “[…] changed the focus away from the limitations imposed by a disability, and turned it towards the limitations imposed by society through attitudinal and architectural barriers” (p. 2). Davis (2015) highlights the historical significance of the Act as well as its connection to civil rights, “It was the first federal language that clearly and uncompromisingly guaranteed the civil rights of people with disabilities; it was modeled on Title VI of the Civil Rights Act and Title IX of the Education Amendments Act, both of which never mentioned people with disabilities” (Davis, 2015, p. 11). Mayerson (1992) further explains:
Section 504 was also historic because for the first time people with disabilities were viewed as a class – a minority group. Previously, public policy had been characterized by addressing the needs of particular disabilities by category based on diagnosis. Each disability group was seen as separate, with differing needs. Section 504 recognized that while there are major physical and mental variations in different disabilities, people with disabilities as a group faced similar discrimination in employment, education and access to society. (para. 7)
Solidarity amongst people with different types of disabilities was key in passage of the Rehabilitation Act as well as additional advocacy needed to implement its provisions, which will be discussed in the disability resistance movements chapter. The Act itself was historic, however its passage did not immediately impact the lives of disabled people.
Prior to the law going into effect, the government needed to create and declare regulations specifying the criteria for being legally regarded as a disabled person and what circumstances would meet the definition of discrimination in the context of disability (McKeever, 2020). Four years passed without the government publishing the needed regulations and disabled advocates were concerned that this delay would decrease the effectiveness of the approved legislation (McKeever, 2020). “[…] advocates organized protests around the country. In April 1977 they launched a sit-in at a federal building in San Francisco that would last for 28 days—the longest peaceful occupation of a federal building in U.S. history—and result in victory” (McKeever, 2020, para. 7).
The regulations were finally issued after extreme pressure from disabled people and allies. “Regulations are a detailed set of rules issued by a government […] indicating how a law is to be interpreted, and outlining procedures for enforcement of the law. In others words they translate Congress’ intent into a detailed set of rules and procedures to assist in compliance” (Rouse, 1981, p. 199). Therefore, the regulations were essential for disabled people to actually be protected by the nondiscrimination mandate. It took four years from Congress agreeing that disabled people have civil rights to actually have what was needed for those rights to be recognized, enforced, and federally supported. A more thorough explanation of the advocacy that led to the acceptance of the Section 504 Regulations will be provided later in this textbook within the chapter on disability resistance movements.
Rouse (1981) asserted that, “Attitudes about the cost of opening our jobs, programs, and services to disabled people need to change. […] Economically speaking, we must make the financial commitment in our programs to eliminate the architectural, transportation, communications, and attitudinal barriers that prevent the disabled from assuming their rightful roles and responsibilities in our society. So the basic question is, can we open our minds enough so that we become aware of our attitudes and change them?” (p. 205). Further, what we should not accept is the economic burden of disabled people not being able to fully access and participate in our society, what we all lose when disabled people are excluded. Section 504 was only able to protect disabled peoples’ civil rights in federal buildings and federally funded programming, leaving any private program, and even state or local government buildings and programs, able to continue with the discrimination and exclusion of people with disabilities.
In part due to this lack of comprehensive discrimination protection, advocates in the 1980’s collectively decided to focus on universal civil rights legislation for disabled people (McKeever, 2020). According to McKeever (2020) “The National Council on Disability commissioned a report on the need for such a law, while its vice chair Justin Dart Jr.—who would later become known as the ‘Godfather of the ADA’—embarked on a national tour to discuss disability policy with local officials and gather stories of the discrimination people with disabilities faced” (para. 10). While it was clear to disabled advocates that discrimination was occurring regularly in disabled people’s lives, it was important to gather concrete data supporting their assertions.
Results from the 1986 Harris Survey supported the need for change. The survey’s findings were the results of polls conducted in the early 1980s that found that disabled people are uniquely underprivileged and disadvantaged, poorer, less educated, less social, have less life fulfillment/satisfaction and that many disabled people reported they wanted to work but weren’t employed (Mayerson, 1991). Disabled respondents reported that employers would not recognize that they were capable of holding a full-time job because of their disability (Mayerson, 1991). Disabled respondents also described discrimination in the job market and educational institutions, social rejection (people shying away or ignoring people with disabilities), lack of accessible transportation, and denial of health and life insurance due to disability (Mayerson, 1991). In addition, there was a push to chip away at the protections offered by Section 504, finding loopholes and exceptions to perpetuate inaccessibility and inequality and singling out particular groups for exclusion. Davis (2015) explains that:
The 1980s saw a continual chipping away at the larger civil rights claims of Section 504. […] one of the most notable of these erosions was the increasing use of carve outs to restrict 504 from applying to various groups, notably those with conditions that essentially offended the sensibilities of conservative politicians and their constituencies. This meant that people with AIDS or who were HIV positive, along with sexual minorities in the LGBT community, people who were drug or alcohol addicted, and the like, were made personae non gratae when it came to civil rights. (p. 76)
The disability community continued to lack universal protection as well as universal appreciation and understanding of their limitations as well as strengths. Efforts were made to decrease the power of the community and their advocacy efforts by pitting different disability groups against each other and resisting that separation was essential in order to keep civil rights as a focus.
Fair Housing Amendments Act of 1988 (FHAA) (Public Law 100-430; 102 Stat. 1619) extended disability civil rights protections to housing in the private sector, independent of the receipt of federal funding by amending Title VIII of the Civil Rights Act of 1968 to prohibit discrimination on the basis of disability in sales, rentals, or financing in housing, representing the first time disability was added to the list of traditionally protected groups (Mayerson, 1991). The United Spinal Association (2004) created an explanation document to assist disabled people with understanding their rights and responsibilities under the FHAA, stating “this law is intended to increase housing opportunities for people with disabilities. However, individual citizens must come forward with concerns, file complaints or sue if they believe their rights have been violated. The government has no other way of detecting discrimination as it occurs” (p. 1). The Act mandates that:
Newly constructed multi-family dwellings with four or more units must provide basic accessibility to people with disabilities, if the building was ready for first occupancy on or after March 13, 1991. The design features mentioned apply to all units in buildings with elevators and to ground floor units in multi-level buildings without elevators. Multi-story townhouses are exempt from these requirements. (The United Spinal Association, 2004, p. 7–8)
The accessible design features required of these types of new construction include: at least one entrance must be on an accessible route; all public and common use areas must be accessible; all doors into and within the premises must be wide enough for people who use wheelchairs; there must be an accessible route into and through the unit; all light switches, electrical outlets, thermostats, and environmental controls must be placed in an accessible location; reinforcements in the bathroom walls for installation of grab bars around the toilet, tub, and shower must be provided; kitchens and bathrooms must be constructed so that a person who uses a wheelchair can maneuver about the space (The United Spinal Association, 2004).
The FHAA prohibits: refusing to sell or rent a unit where a genuine offer has been made, imposing different terms and conditions or treating people differently, discouraging an individual from living in a certain neighborhood or community (‘steering’), and advertising or making statements in a way that denies access to an individual, misrepresenting the availability of a unit, and blockbusting by encouraging the sale or rental of a unit by implying that people of a certain protected class are entering the community in large numbers – all on the basis of disability (The United Spinal Association, 2004). The FHAA also made it illegal “[…] for a landlord to refuse to allow a tenant with a disability to make modifications, at the tenant’s expense, which would permit the tenant to fully enjoy the premises. The landlord can, where reasonable, require the tenant to restore the interior of the premises to the condition it was in prior to the modification” (The United Spinal Association, 2004, p. 3). In addition, the FHAA allows tenants to make modifications to public and common spaces such as lobbies, laundry rooms, and parking lots – these are considered reasonable accommodations in structural modifications (The United Spinal Association, 2004). Finally, the “FHAA requires that the housing provider make reasonable modifications in rules, policies, practices or services necessary to give persons with disabilities equal opportunity to use and enjoy the dwelling” (The United Spinal Association, 2004, p. 7). For example, a building with a no pets policy would be required to allow a person with a disability to have their trained service animal on site.
The FHAA was historic for conceptualizing disabled people as a protected class and enshrining their rights to accessible housing in statute. However, the financial burden of any needed accommodations or modifications in housing built before 1991 remained on the disabled person’s shoulders, leaving many unable to access the available affordable housing in their neighborhoods. Further, it was difficult for people with disabilities to seek relief if a landlord was in violation of FHAA, requiring time, money, and legal resources not widely available to disabled people. The need for comprehensive civil rights legislation remained.
The report commissioned at the direction of Congress in 1986 by the National Council on Disability, an independent federal agency, was entitled Toward Independence and listed 35 legislative recommendations based on findings from Justin Dart Jr.’s interviews with disabled people all over the country, including an omnibus Americans with Disabilities Act (Mayerson, 1991). The follow up report entitled On the Threshold of Independence (with a few edits) was the Americans with Disabilities Act as originally introduced in 1988 (Mayerson, 1991). Therefore, many of the reports from disabled people were incorporated directly into the legislation. Davis (2015) explains that:
The proposed ADA was an ambitious and overly idealistic piece of legislation. Many refer to it as the ‘flat earth ADA’ or the ‘flatten the earth ADA.’ The idea was that the legislation would flatten the playing field for people with disabilities by eliminating all barriers and doing so immediately. In this view all buildings new and old would be transformed. All transportation would become accessible. The proposed legislation was about as radical a piece of civil rights legislation as one could imagine, and it was coming from a largely conservative Republican council. (p. 84)
However, there was strong pushback from business-minded individuals as well as some disability advocates that this initial piece of legislation went too far, particularly compliance being expected immediately upon passage of the act. The 1988 version of the ADA languished in committees and died the quiet death of the vast majority of bills introduced into Congress (Davis, 2015).
Nevertheless, the legacy of the 1988 version of ADA legislation should not be understated. As Davis (2015) explains, “ADA sponsors and the disability community used 1988 as an opportunity to publicize the Act, mobilize grass roots support, solicit the endorsement of presidential candidates in the upcoming election, enlist congressional cosponsors, and establish the Act as a top priority for the next Congress” (p. 91). It was essential that presidential candidates go on record in support of civil rights for disabled people in order for the newer version of the ADA to gain traction in Congress and have a hope of passing through various committees and both chambers. Some scholars theorize that the disabled vote is what helped Bush Sr. win the election in 1988 as he came out strong in favor of the concept of a civil rights bill for disabled people whereas his opponent Dukakis was silent on the issue (Davis, 2015). Bush’s endorsement of a comprehensive bill of civil rights for the disabled community allowed some Republicans cover to support the bill that would have been more hesitant without the president’s leadership and according to Davis (2015) made the bill bipartisan. A disability subcommittee was formed to transform the 1988 version of the ADA into a piece of legislation that would satisfy concerns about the financial burden placed on businesses, a balancing act between assertion of what disabled people need to fully participate in society with the cost of modifications (Davis, 2015). Multiple teams and advocates from around the country contributed to the new version of the ADA that was introduced into Congress the following year. Mayerson (1992) additionally asserts that:
The ADA owes its birthright not to any one person, or any few, but to the many thousands of people who make up the disability rights movement – people who have worked for years organizing and attending protests, licking envelopes, sending out alerts, drafting legislation, speaking, testifying, negotiating, lobbying, filing lawsuits, being arrested – doing whatever they could for a cause they believed in. There are far too many people whose commitment and hard work contributed to the passage of this historic piece of disability civil rights legislation to be able to give appropriate credit by name. Without the work of so many – without the disability rights movement – there would be no ADA. (para. 2)
The purpose of the Americans with Disabilities Act of 1990 (ADA) (Public Law 101-336; 104 Stat. 327) was to: “(1) to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities; (2) to provide clear, strong, consistent, enforceable standards addressing discrimination against individuals with disabilities; (3) to ensure that the Federal Government plays a central role in enforcing the standards established […] on behalf of individuals with disabilities; and (4) to invoke the sweep of congressional authority, including the power to enforce the fourteenth amendment and to regulate commerce, in order to address the major areas of discrimination faced day-to-day by people with disabilities” (42 U.S.C. § 12101 et seq).
This was directly in response to information provided by disabled people in at times heartbreaking testimony. According to Mayerson (1992):
Members of Congress heard from witnesses who told their stories of discrimination. With each story, the level of consciousness was raised and the level of tolerance to this kind of injustice was lowered. The stories did not end in the hearing room. People with disabilities came from around the country to talk to members of Congress, to advocate for the Bill, to explain why each provision was necessary, to address a very real barrier or form of discrimination. Individuals came in at their own expense, slept on floors by night and visited Congressional offices by day. People who couldn’t come to Washington told their stories in letters, attended town meetings and made endless phone calls. (para. 29)
Further, Davis (2015) highlights the significance of testimony from Rep. Major Owens of New York:
As an African-American congressman, [Rep. Owens] used language that linked the civil rights act to previous ones: ‘The Americans with Disabilities Act will go a long way to stopping a problem that should’ve never started. We may have inherited a society that segregates and excludes people with disabilities, but we don’t have to maintain it.’ Owens ended with a sweeping statement of inclusion. He noted that he had recently learned the term ‘temporarily able-bodied’ could be applied to all ‘non-disabled’ people. The phrase indicates that being ‘normal’ is only a temporary state. He went on: ‘When you think about it, our entire country is made up of disabled people and temporarily able-bodied people. The people we are protecting are not a mysterious, distant them, but rather ourselves.’ (p. 94)
Rep. Owens highlighted the need to see disabled people as full members of our society, and recognizing (and perhaps coming to terms with the reality) that civil rights for disabled people actually benefits every person in our country because anyone can become disabled at any time.
Title I of the ADA banned discrimination in employment against qualified individuals because of disability, evoking the pivotal concepts of reasonable accommodation and undue hardship taken from Section 504 of the 1973 Rehabilitation Act. Businesses would be required to provide reasonable accommodations to assist a disabled person to perform the essential functions of the position, unless the accommodations needed would create an undue hardship (a significant difficulty or expense) for the company (Parry, 1990). The important improvement on previous legislation was that this ban applied to all but the smallest employers, regardless of funding source (there are exceptions to the ADA for small businesses that employ less than 15 people). This was the first time almost all workers had protections against discrimination on the basis of disability in application, hiring, advancement and firing practices (Parry, 1990). Social workers need to understand the concept of reasonable accommodation in order to assist disabled clients in problem solving when barriers exist in obtaining or maintaining employment. Clients may not know they have the right to request accommodations and what kinds of accommodations may be helpful. An excellent resource is the Job Accommodation Network website (askjan.org) maintained by the U.S. Department of Labor’s Office of Disability Employment Policy. Using this reputable data source, job seekers can search for examples of accommodations that have been used to assist others with their condition or diagnosis, amongst numerous other disability employment tools (U.S. Department of Labor Office of Disability Employment Policy, 2022).
There are some limitations and important distinctions made in the Americans with Disabilities Act. Of importance to social workers with clients with substance use disorder, “The Act does not protect an employee when an employer acts based on the employee’s use of illegal drugs. It does protect persons with a disability who no longer are using illegal drugs and either have been successfully rehabilitated or are participating in a supervised rehabilitation program” (Parry, 1990, p. 294). Thus, people are protected from discrimination based on prior drug use or participation in drug treatment, but not discrimination or other adverse actions that might occur based on current drug use.
Title II of the ADA banned the exclusion of disabled people from participation in or receiving benefits from services, programs, or activities of public entities (including state and local organizations). This included requirements for all public transportation (excluding airlines) with fixed routes that no new vehicles be purchased or leased that are not accessible, the establishment of paratransit- special transportation for people with disabilities who are unable to utilize available public transit, and that every public entity submit an annual plan to the Secretary of Transportation “detailing how they will provide special services to persons with disabilities” (Parry, 1990, p. 295). In addition, any newly constructed buildings for the purpose of public transportation must be accessible and existing public transportation buildings must make accommodations and modifications to become accessible to the extent possible, provided that at least two-thirds of a system’s key stations are accessible and with light rail, rapid transit, and commuter rail/intercity systems only one car in each train must be accessible (Parry, 1990). Various deadlines for different features being fully accessible were instituted that have all passed as of the date of this writing. Standards for accessibility “must be consistent with or exceed the minimum guidelines issued by the Architectural and Transportation Barriers Compliance Board” (Parry, 1990, p. 296). Social workers can better serve their disabled clients if they understand the rights that exist for accessible transportation in their service areas.
Title III of the ADA stated that no individual may be discriminated against on the basis of disability with regards to the full and equal enjoyment of the goods, services, facilities, or accommodations of any place of public accommodation operated by private entities. This would include most places of lodging, recreation, transportation, education, and dining, along with stores, care providers, and places of public displays. According to Parry (1990), “All public accommodations shall be afforded to an individual with a disability in the most integrated setting appropriate to the needs of the individual” (p. 296). In addition, this title states it is discrimination not to make reasonable modifications, including not providing auxiliary aids and services to people with disabilities that are needed to fully participate in and receive the benefits of a public service” (Parry, 1990, p. 296). Barriers in existing facilities are required to be removed when removal is “readily achievable” – meaning “easily accomplishable and able to be carried out without much difficulty or expense” (Parry, 1990, p. 296). New facilities are required to be accessible and when alterations are made to an area of the facility containing a primary function, bathrooms, telephones, and drinking fountains must be made accessible. However, a compromise was struck in which elevators were not required for facilities that are less than three stories or have less than 3,000 sq. ft. per story unless the building is a shopping center, a shopping mall, or the professional office of a health care provider (Parry, 1990). Title III also has exemptions for private clubs and religious organizations that are exempt from coverage under Title II of the Civil Rights Act of 1964 (Parry, 1990). Social workers should not assume that spaces are accessible to all and instead develop working knowledge of barriers that disabled clients may face, particularly for places where clients are referred. It might increase empathy and understanding to reflect on the difficulty in knowing which locations must be accessible and which are exempt, and the challenge this poses for disabled people on a regular basis.
Title IV of the ADA focused on telecommunications and stated that relay services must be available to the extent possible and in the most efficient manner for d/Deaf and speech-impaired individuals. Major communications companies were given three years to comply with the mandate for offering relay services that adhere to or exceed the FCC standards (Parry, 1990). The passage of the ADA marked the first time in U.S. history that nationwide relay services, that connect telephone users with d/Deaf or hard of hearing people, were required (National Association of the Deaf, 2022). Social workers can be better prepared for when relay services are needed by familiarizing themselves with TTY machines and the policies for communication with d/Deaf and hard of hearing clients established by their agencies.
Title V of the ADA are miscellaneous provisions regarding legal consistency and reinforces the concept of choice for people with disabilities. As Parry (1990) explains, the ADA signaled a shift in allowing disabled people to determine what was best for themselves:
Years ago, when the concept of integration of persons with disabilities first was proposed, the emphasis was on an objective standard of freedom or liberty which presumed that the most normal or the least institutional situations were best, regardless of the individual’s perspective. The ADA is more subjective, allowing the viewpoint of the person with the disability to predominate. If a person wishes to participate in a separate or different program, that is fine. Society still has an obligation, however, to ensure that the most integrated situations are available, should the individual choose that alternative. (p. 297)
Following the enactment of the ADA, disabled people could not legally be primarily regarded as in need of charity, medically-deficient, or a prospect for employment reintegration (Davis, 2015). As Davis (2015) summarized:
Instead, disability would be seen now and forever as a civil rights issue in which aid and redress would not be focused on physical therapy or monetary benefits. Rather, it would be about the right of individuals to have access to the world that everyone else is part of. No longer would a significant portion of our fellow beings be considered different by virtue of being invisible or pitiable. Instead, they would be citizens of this country and entitled to the rights and privileges of all people. (p. XIII)
The ADA transformed disability activism by centering the disabled experience in America, recognizing the profound inequities and difficulties in asserting basic civil rights as a disabled person, and strengthened political activism to demand those rights (Davis, 2015). McKeever (2020) reiterates the Act’s importance:
‘It is the world’s first declaration of equality for people with disabilities,’ [Justin] Dart wrote after the ADA was passed. ‘It will proclaim to America and to the world that people with disabilities are fully human; that paternalistic, discriminatory, segregationist attitudes are no longer acceptable; and that henceforth people with disabilities must be accorded the same personal respect and the same social and economic opportunities as other people.’ (para. 13)
The ADA may not be perfect, but as Dart wrote in 1990, “it is only the beginning. It is not a solution. Rather, it is an essential foundation on which solutions will be constructed” (as cited in McKeever, 2020, para. 17).
Dart was correct that the 1990 ADA was not a final solution and there have been threats to the ADA over the years, including multiple Supreme Court decisions that weakened the scope of who was protected under the ADA by interpreting the definition of disability of having or being perceived to have one or more conditions that “substantially limits one or more life areas” to mean “significantly restricted” (Davis, 2015, p. 225). According to the U.S. Equal Employment Opportunity Commission (2008), The ADA Amendments Act of 2008 (Public Law 110-325; 122 Stat. 3559) reversed these Supreme Court decisions and declared in statute the definition of disability to include as large of a scope as possible, as was the Congressional intent of the original 1990 Act (42 U.S.C. ch. 126 § 12101 et seq).
Unfortunately, efforts to diminish the far-reaching impact of the ADA have continued in more recent times. The ADA Education and Reform Act of 2017 (H.R. 620) and other similar proposed (but not passed) legislation have attempted to weaken the ADA. As the Disability Rights Education and Defense Fund ([DREDF], n.d.) explains:
H.R. 620 requires a person with a disability who encounters an access barrier to send a written notice specifying in detail the circumstances under which access was denied, including the property address, whether a request for assistance was made, and whether the barrier is permanent or temporary. No other civil rights law permits businesses to discriminate without consequence unless and until the victims of discrimination notify the business that it has violated the law. The ADA should not place the heaviest burden for ending discrimination on the very people the law is there to protect! (para. 4)
The counterargument to bills like H.R. 620 is that businesses have had notice of accessibility requirements since 1990 – and that is over three decades to comply, seemingly plenty of time to plan and execute necessary changes. Businesses currently have incentive to be accessible as they risk being sued for ADA violations. However, if the ADA is amended to require disabled people to notify a business first that they are not in compliance/inaccessible prior to filing a lawsuit, and then the clock starts on a waiting period to allow the business to comply, many businesses will take a wait and see approach rather than be accessible in the first place – all incentives for accessibility would be removed (DREDF, n.d.). H.R. 620 passed the House in the 115th Congress but died in the Senate and similar bills have been proposed since but have not passed.
Most recently, as of the writing of this chapter, the proposed H.R. 77 – ADA Compliance for Customer Entry to Stores and Services Act (ACCESS Act) attempts to revive the notification and additional waiting time period (also known as “notice and cure”) for compliance with the ADA that was mandated in the proposed H.R. 620 (Congressional Research Service, 2021). The so-called ACCESS Act H.R. 77 was introduced into the House in January 2021 and was referred to multiple committees for study and consideration. Despite the favorable and positive name, the ACCESS Act continues to burden the disabled person with initiating a complaint and following up with legal action, instead of the business or entity being required to comply with accessibility standards that have existed for 30+ years (Congressional Research Service, 2021).
The ACCESS Act also states, as reported by the Congressional Research Service (2021) “Based on existing funding, the Disability Rights Section of the Department of Justice shall, in consultation with property owners and representatives of the disability rights community, develop a program to educate State and local governments and property owners on effective and efficient strategies for promoting access to public accommodations for persons with a disability” which sounds logical on the surface, until you consider that this education and standards have been available for decades and businesses are expected to comply with all sorts of regulations in order to operate legally. As DREDF (n.d.) explains, “Establishing and running a business necessitates compliance with many laws and rules—that is the cost of doing business. It is unthinkable that we would delay or eliminate consequences for businesses that failed to pay taxes or meet health and safety codes. Violating the rights of people with disabilities should be treated no differently” (para. 9).
It is also important to be aware of recent threats to protections against discrimination and disparate impact on disabled people of so-called neutral policies. CVS Pharmacy, Inc. vs. Doe was a recent case taken all the way to the Supreme Court. As Roppolo (2021, November 11) summarizes, the case “stemmed from a lawsuit filed against CVS by multiple people who take prescription drugs for HIV/AIDS. The plaintiffs objected to changes to the company’s terms that meant they could not opt out of mail-only delivery or utilize another pharmacy with experience handling their special medication needs. They argued it had a discriminatory impact on them, even if that wasn’t the company’s intent” (para. 4). CVS maintained that the policy was ‘neutral’ and not discriminatory in nature, and that Section 504 protections did not cover ‘disparate impact,’ only ‘intentional discrimination.’ As reported by Roppolo (2021, November 5), “a ruling that Section 504 does not reach ‘unintentional’ discrimination or ‘disparate impact’ discrimination would rip out a central tenet of our disability rights law in key sectors of our society that are covered only by Section 504,’ Claudia Center, the legal director at DREDF, told CBS News” (para. 9). The potential impact of this case could not be understated, in which disabled people would have to prove that discrimination was the intent (and not simply the effect or actual experienced result) of a policy in order to seek needed change.
Roppolo (2021, November 11) explains the sequence of events that occurred:
When the case was first heard in trial court, the judge ruled the problems the plaintiffs described did not violate federal disability laws. But when they appealed, the 9th Circuit Court of Appeals sided with the unnamed plaintiffs. CVS then appealed to the Supreme Court, saying in court filings the ruling would ‘upend insurance plans and skyrocket healthcare costs nationwide.’ The justices agreed to take the case and scheduled arguments for December 7,  but both sides have now asked the court to dismiss the case. (para. 9-10)
After pressure from disability advocates and customers, CVS announced they would withdraw their appeal to the Supreme Court, and instead work with the disability community and prominent organizations to create policies that “protect access to affordable health plan programs that apply equally to all members” (Roppolo, 2021, November 11, para. 3). Therefore, in this circumstance review by the Supreme Court as to whether Section 504, ADA, and the Affordable Care Act (as it also borrows Section 504 language) apply to unintentional discrimination or policies that have disparate impact on disabled people was prevented from happening.
A similar legal argument was made by the Los Angeles Community College District (LACCD) when blind students won their case against their school for failure to provide textbooks and other materials that are compatible (accessible) via screen readers (DREDF, 2021). LACCD reported intent to appeal the case to the Supreme Court, arguing that “the ADA and Section 504 do not prohibit any form of disparate impact discrimination and only protect disabled people from discrimination that is intentional […] Supreme Court [should] make this the rule for the entire country” (DREDF, 2021, para. 12). Instead of complying with the original decision in favor of the students or the appellant court decision that sided with the students, or claiming that they were either already meeting access needs or that to provide the requested access would be an undue financial burden or a fundamental alteration to services provided, LACCD attorneys decided to argue against disabled peoples’ civil rights legislation’s ability to protect against unintentional discrimination.
Most often, discrimination against disabled people does not stem from a conscious objective to cause harm to disabled people, instead it comes from the way in which our shared communities are designed and constructed and not being aware or wanting to include disabled people in establishing protocols and processes (DREDF, 2021). As DREDF (2021) explains, “Some examples include: failing to provide accessible spaces with ramps and elevators; using trains or buses in public transit that are not wheelchair accessible; launching websites and mobile apps that are unusable by blind people and people with other disabilities; and policies that seem neutral but that actually function to exclude people with disabilities” (para. 15). Therefore, disabled people need laws such as the ADA and Section 504 to mandate the government and businesses provide accessibility and comply with civil rights, “regardless of what anyone ‘intended’” (DREDF, 2021, para. 15).
After enormous pressure from disability advocates, LACCD Board of Trustees voted unanimously at their March 2, 2022 meeting to direct their attorneys to refrain from appealing to the Supreme Court and instead utilizing mediation to come to a settlement agreement (LACCD, 2022). While this particular threat to the ADA and other disability civil rights statutes has been neutralized, it is important to understand the continued vulnerability for criticism and concerns that sooner or later a case will make it to the Supreme Court and 50+ years of fighting for disability civil rights will be put in jeopardy. As social workers, it is important to consider the toll of having your civil rights consistently up for debate has on disabled people.
The Future of Disability Policy in the U.S.
The world has changed considerably since the ADA was originally passed and there have been multiple lower court rulings about its applicability regarding digital and electronic access for disabled people. Federal government agencies’ electronic and information technology (including all websites) were required to be accessible for disabled people under Section 508 of the Rehabilitation Act (29 U.S.C § 794 (d)) which was passed as part of the Workforce Investment Act of 1998 (General Services Administration, 2022). Accessibility standards were developed by the U.S. Access Board and have been amended as recently as 2017 to “harmonize these requirements with other guidelines and standards both in the U.S. and abroad, including standards issued by the European Commission, and with the World Wide Web Consortium (W3C) Web Content Accessibility Guidelines (WCAG 2.0), a globally recognized voluntary consensus standard for web content” (General Services Administration, 2022, para. 3). Unfortunately, compliance with these requirements has been far from consistent. A study conducted in 2021 by the Information Technology and Innovation Foundation (ITIF) found that 30 percent of the most popular federal government websites did not pass an automated accessibility test for their homepage, and 48 percent failed the test on at least one of their three most popular pages (Johnson & Castro, 2021). ITIF recommends that the Biden Administration prioritize website access for disabled people by supporting the creation of a federal accessibility testing lab responsible for ongoing accessibility testing (and resolution of issues) of all federal websites, acting as a central clearinghouse dedicated to quickly eliminating access barriers (Johnson & Castro, 2021). Social workers might have an opportunity for advocacy in voicing support and providing examples of why the U.S. needs centralized, ongoing, and thorough electronic accessibility testing and problem resolution.
Additionally, a grey area has existed for decades as to how and whether the ADA applies to electronic information and digital access for non-federally funded websites. After considerable delay and pressure from disability rights advocates, the U.S. Department of Justice finally released guidelines for how the ADA applies to web access for disabled people in March 2022 (The U.S. Department of Justice Civil Rights Division, 2022). According to the press release by the U.S. Department of Justice Civil Rights Division (2022), the Department is now maintaining the position that full and equal access to all content and functionality of websites for state/local governments and businesses that are open to the public online are subject to Title II and Title III of the ADA, respectively. Suggestions on how to make websites accessible are available on the Department’s website and multiple companies exist solely to work with businesses and governments to ensure accessibility. However, the difficulty remains in enforcement – the burden is on the disabled person to sue if access is unavailable, whether that be a federal or non-federal website (Espino, 2016).
As of the writing of this chapter, there is no proposed legislation to either expand who must provide electronic accessibility or increase enforcement mechanisms for violations/failure to provide access that do not burden the disabled individual. As you have now read the majority of this chapter and better understand the financial limitations facing many disabled people, it should be clear how the court system and resorting to litigation is not possible for many disabled individuals. Historically it has mostly been larger organizations with philanthropic funding that have sued companies for accessibility, such as the National Federation for the Blind and the National Association of the Deaf (Espino, 2016).
Social workers should advocate for electronic accessibility within their agencies and organizational affiliations as well as the variety of websites and other information technologies that they personally utilize, including social media. We can amplify and highlight both the legal and ethical imperative for disabled people’s digital access rights by educating others about the new Department of Justice regulations. There are programs that can perform automatic accessibility testing, however what can be more accurate is to properly compensate disabled people to attempt to navigate the online content and catalog the accessibility concerns – disabled people know best what they need (Goldstein & Care, 2012). As summarized by Espino (2016), it is far less costly and damaging for an organization to include electronic accessibility from the beginning than to try to rearchitect a website after losing in court. While enforcement and compliance with regulations are lacking, advocacy groups are bringing lawsuits in greater numbers each year (Espino, 2016; Johnson & Castro, 2021). This author hypothesizes that with the new Department of Justice regulations being issued that more suits will be filed and won by disability advocacy groups, utilizing the clear mandate for access in their legal arguments.
The Disability Integration Act of 2019 (DIA) (H.R. 555 and identical bill S. 117) was introduced in both House and Senate in January 2019 and did not progress beyond being referred and discussed in separate committees (Congressional Research Service, 2020). Highly regarded disability advocacy organization ADAPT (2020) explained in a press release at the height of the COVID-19 pandemic:
[DIA is] bipartisan and bicameral legislation, introduced […] to address the fundamental issue that people who need Long Term Services and Supports (LTSS) can be forced into institutions, losing their basic civil and human rights. […] the legislation is more important than ever as elderly and Disabled people – particularly Black and brown people with disabilities – unnecessarily die from COVID-19 because they have been warehoused in nursing facilities and other institutions. (para. 2)
The National Center for Disability Rights ([NCDR],2020) created a website disabilityintegrationact.org to answer frequently asked questions about DIA and assist advocates in understanding and championing the Act for proposed protections for disabled people in need of LTSS. According to the NCDR (2020) fact sheet, DIA:
[…] ensures people with disabilities have a right to live and receive services in their own homes […] assuring that states and other LTSS insurance providers deliver services in a manner that allows disabled individuals to live in the most integrated setting, have maximum control over their services and supports, and lead an independent life, [… and] requiring public entities to address the need for affordable, accessible, integrated housing that is independent of service delivery. (para. 3)
Community-based services would be required to be offered to disabled people in need of LTSS prior to institutionalization and institutionalized people would need to be notified regularly of community-based alternatives available to them (Congressional Research Service, 2020). Disability advocates maintain that forced institutionalization is discrimination and that DIA is needed to strengthen the integration mandates of the ADA to specifically include disabled people in need of LTSS and their federally protected right to services in the community, their freedom and liberty. In the 116th Congress (2019-2020), DIA garnered 238 cosponsors in the House and 38 cosponsors in the Senate (Congressional Research Service, 2020). It remains to be seen what support for DIA would look like today, particularly in a world now forever changed by the COVID-19 pandemic. Social workers would be well served to remain vigilant for legislation such as DIA which has the potential to greatly impact the disabled community.
This chapter demonstrates the evolution of disability-relevant policies in the United States. While disability rights advocates have made some great strides for the disability community, there are still many problems with disability policy formation, implementation, and enforcement. When reviewing any policy in light of a client case, it is important to ask who is included/eligible and who is left out. The hope with this chapter is to introduce you to important disability policies that have shaped how disabled people have been seen in our country over time. The order of the policies as presented are not always linear and progressive, but can be used a loose framework in thinking about the objectives of legislation and statutes that affect disabled people by category. Please refer to the reference list for more information and resources to continue your study of disability policy: Past, present, and future. What federal policies are still needed to protect and empower disabled people? What architectural and attitudinal barriers still exist in the everyday lives of disabled Americans? How effective are these disability policies in your clients’ lives? How well are these disability policies implemented? How can you contribute to a better policy environment for the disability community?
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Language that honors the disability, and someone's pride in being part of disability culture, such as "Autistic person."