Slowly, reforms were made throughout the 20th century to bring about equality under the law for people with disabilities. The first landmark legislation was the passage of Section 504 of the 1973 Rehabilitation Act (RA) and culminating in the bipartisan American with Disabilities Act of 1990 (ADA). Both were driven by years of people with disabilities and parents of children with disabilities protesting unequal treatment, segregation and exclusion across the country.

Section 504 forbade organizations and employers receiving federal funds from excluding or denying individuals with disabilities an equal opportunity to receive program benefits and services.²⁸ It established for the first time under the law that discrimination and barriers in society do exist and that these barriers blocked people with disabilities from participating in society rather than just accepting their exclusion as a natural and expected societal consequence of disability.

Decades of regulatory guidance and lawsuits around Section 504 ensued, eventually leading to the more robust ADA. The Department of Health and Human Services built upon Section 504 with a final rule on May 1, 2024, that went further to strengthen civil rights protections based on disability in health care and human services.²⁹ This rulemaking addressed discrimination in medical treatment, added enforceable standards for accessible medical diagnostic equipment and ensured accessible web content and mobile apps.³⁰

The ADA, signed into law by President George H.W. Bush, prohibits discrimination against individuals with disabilities and has three titles pertaining to employment, state and local government and public accommodations and commercial facilities.³¹

Building upon the ADA, in 2008, Congress passed the Americans with Disabilities Act Amendments Act (ADAA) that broadened the definition of disability to ensure that it encompassed impairments such as cancer, diabetes and epilepsy.³²

The stated mission of the ADA is to assure equality of opportunity, full participation, independent living and economic self-sufficiency for persons with disabilities.³³

This was a step forward in removing extant barriers and providing civil rights to people with disabilities, but as the remainder of this report will show, there is more work to be done to provide better outcomes in health, independence, workforce participation and marriage.

There are still some areas of law and regulation that need to be addressed to provide equality of opportunity and the pursuit of happiness to all people with disabilities: Particularly when it comes to their rights to life, accessing housing, accessing travel and the pursuit of marriage and family.

Disabled lives are under threat from many state laws and medical practices surrounding the beginning and end of life. At the beginning of a woman’s pregnancy, she is often offered genetic testing to determine if the fetus carries any genetic disorders, such as Down syndrome, cystic fibrosis, Tay-Sachs disease or spina bifida.

In the post-Roe vs. Wade environment, many are using these tests to determine if they should abort their child early in pregnancy due to a possible disability. This is problematic because it sends the message that these lives are worth eliminating — a conclusion reached by Iceland when they declared Down syndrome nearly eliminated due to prenatal screening.³⁴

In the United States between 1995-2011, it is estimated that 67 percent of Down syndrome lives were eliminated before birth. Even more worrying, a New York Times investigation found that noninvasive prenatal testing can be wrong 80-93% of the time, and these tests are not even FDA approved.³⁵

At the end of life, the problems are just as troubling and are spreading through state statutes. Physician assisted suicide is legal in 10 states and the District of Columbia, and 19 states have pending legislation in 2024.³⁶ About 5,330 people in the U.S. died with medical assistance as of 2020. These laws allow an individual who receives a terminal diagnosis of less than six months the option to receive a prescription drug from a physician to end their life. However, the definition and timeline of “terminal” is terribly subjective and often wrong.

As Vincenzo Piscopo, President & CEO of the United Spinal Association points out, “Quadriplegics can become eligible for physician-assisted suicide based on a technicality that also qualifies many others who could live long, fulfilling lives — if appropriate medical care were available. That is, if you have six months to live in the absence of medical intervention, you are eligible. Therefore, diabetics and dialysis patients — who can live for decades with treatment — also qualify.”³⁷ This is not hypothetical. In countries where physician assisted suicide laws are lax, we see people with disabilities pressured to end their lives.

In Canada, the fiscal tradeoffs of long-term and palliative care costs appear to take precedence over the non-monetary value of a life in hospital administration.³⁸

For someone who becomes a quadriplegic, the first year of health and living expenses is an average of $1,064,716, and each subsequent year is an average of $184,891, according to the Christopher & Dana Reeve Foundation.³⁹

In 2019, the American Medical Association affirmed that, “It is the policy of the AMA that physician assisted suicide is fundamentally inconsistent with the physician’s professional role.”⁴⁰

The medical profession should instead redouble efforts to ensure optimal treatment for pain and discomfort and encourage utilization of services and supports that enhance quality of life.

In 1968, the Fair Housing Act (FHA) aimed to provide protections for people with disabilities against discrimination in government-funded housing programs and the renting, purchasing or financing of housing. This was reinforced in Section 504 of the Rehabilitation Act and a 1988 amendment to the FHA that took full effect in 1991.

Additionally, apartment and rental units fall under the protection of the ADA. All these laws call for “reasonable accommodations or reasonable modifications” such as allowing someone with a disability to transfer to a ground-floor unit, assigning an accessible parking spot or

The ADA established accessibility requirements for public and private ground transportation, including buses, vans, rail cars and similar vehicles.⁴⁵ It established pedestrian protections, such as curb cuts in sidewalks, that made walkways usable for people with mobility aids. Unfortunately, the ADA does not cover all disability rights for air travel, which has knock-on effects in the real world. For example, from December 2018 to March 2022, the Department of Transportation reported 20,000 wheelchairs “lost, damaged or completely destroyed by airlines.” Reports show an average of 1,000 per month misplaced.⁴⁶ For many passengers with disabilities, this can mean months without use of their wheelchair.

In 1986, President Ronald Reagan signed the Air Carrier Access Act (ACAA). While the ACAA prohibits discrimination based on disability, it does not mandate accessible standards for travel such as accessible bathroom stalls or training of staff to handle equipment and understand the needs of people traveling with disabilities.

Bathrooms on most domestic-flight airplanes have not been required to be accessible, and thus are not accessible, leaving individuals with disabilities who are unable to walk or use the bathroom without caregiver assistance no way to use the bathroom in flight irrespective of flight time. Wide-body planes with two aisles, most often used for international flights, have been required to have accessible lavatories since federal rulemaking in 1990.⁴⁷ However, airlines have increasingly been using single-aisle aircraft for long-haul flights. In 2023, the Department of Transportation (DOT) issued a rule requiring airlines to make lavatories on new single-aisle aircraft with at least 125 seats large enough to permit a passenger with a disability and attendant, both equivalent in size to a 95th percentile male, to approach, enter, and maneuver within as necessary to use the aircraft lavatory beginning in 2033.⁴⁸

Airlines have also not been required to provide space for wheelchairs onboard and almost always check wheelchairs at the gate. Thus, those unable to walk are left to the care of untrained airline staff. Many instances of airline staff dropping or severely injuring paralyzed travelers have been documented.⁴⁹

When many people consider their “pursuit of happiness,” it includes marriage and having children. Marriage boasts many benefits, including more meaning and greater life satisfaction.⁵⁰

For those who do have children, marriage and a two-parent household greatly decreases the likelihood of poverty. Only 7% of families are poor if there are two married parents, whereas 32% are poor in single-parent households.⁵¹

Our policies should do all they can to encourage marriage, but unfortunately there are great barriers to family formation for people with disabilities who participate in the disability safety net that do not exist for others. For example, the many individuals with disabilities who depend upon social services such as Social Security Income (SSI), the asset limitation is $2,000 for an individual and $3,000 for a couple. The SSI income limitation is $943 per month for an individual, and just $1,415 for a married couple.

While Medicaid rules vary somewhat by state, the asset limit for married couples can be up to $4,000. This means that for those who find a partner and wish to get married, but their potential mate owns a home, or their combined income puts them over the SSI limit, they risk losing their SSI or Medicaid Home and Community-Based Services (HCBS) caregiver. The comparable in-home care without Medicaid coverage could cost $50,000-200,000 per year. Medicaid waiver programs in some states do not count the assets of the spouse, but Medicaid eligibility can be tied to SSI eligibility. The marriage penalty incurred by asset limitations is another way individuals with disabilities remain impoverished.

Next, there is social stigma for those with disabilities who have children that is underpinned by many state child custody laws. The National Council on Disability in 2012 reported that parents with disabilities face discrimination based on their disability in custody cases and in accessing reproductive healthcare. It found that,

Many individuals with disabilities particularly rely upon caregivers who provide supports for daily living (such as cooking and hygiene), workforce participation and transportation. Medicaid covers these services through long-term care coverage in the form of institutional care or home and community-based service (HCBS) waivers.

According to a 2018 Congressional Revenue Service report, total Medicaid long-term service spending was $154.4 billion in 2016, making Medicaid the largest single payer of long-term care.⁵⁶ Private insurance usually does not cover this kind of care, as it can run from $50,000-$200,000 per year in the private market. Thus, individuals with disabilities often find themselves reliant upon Medicaid as their sole health care option, which in turn provides major disincentives to work and marriage due to income and asset limitations and the absence of state portability of benefits.

As mentioned in the above section, the income and asset limitations in Medicaid keep individuals with disabilities from marriage, but they also keep people from getting a job or a promotion if it means that they could lose their Medicaid-provided caregiver support. Working more hours or an increase in hourly pay can cause a Medicaid recipient to surpass the income eligibility threshold, and thus lose their vitally needed caregiver.

Congress passed the Balanced Budget Act of 1997, creating “Medicaid Buy-In” programs at the state level, designed to overcome the steep benefits cliff that people with disabilities face when taking a job or a pay increase that brings them over the program income or asset limitation. Today there are 45 states with Medicaid Buy-In programs, and these programs usually require working disabled people to “buy-in” to the state Medicaid program through premiums or copayments while allowing a higher income.⁵⁷ Despite these positive improvements, research has found that the programs can still be too confusing to provide economic security and overcome the Medicaid cliff as they enter the workforce.⁵⁸

Lack of employment opportunities and job instability effects disabled individuals more than the general population. In order to open up more job options, disabled people need the option to relocate to a different state. Unfortunately, those who receive long-term care support through Medicaid often cannot leave their current state because their Medicaid benefits will not follow them. Medicaid is a state-administered program and does not transfer when someone moves to another state and the wait lists and wait times to receive a HCBS waiver is prohibitive to moving.

The wait time to receive a Medicaid HCBS waiver averages 36 months. There were over 692,000 people on state wait lists for waivers in 2023.⁵⁹ People with intellectual or developmental disabilities make up about 75% of waiting lists, and seniors and adults with physical disabilities make up the other 25%. In the state of Florida, for example, nearly 25,000 people with disabilities are on the HCBS waitlist and families can expect to wait 7 or more years before getting waiver services.⁶⁰

While in-home care is preferable to many individuals with disabilities because it keeps them connected to their community, it is not the best option for those with very complex medical needs or mental illness associated with their disabilities. However, there is an extreme shortage of beds available for inpatient care.

From the 1950s onward, there has been a move toward deinstitutionalization attributed to a variety of factors including disability civil rights, the Olmstead v L.C.⁶⁷ Supreme Court decision, President John F. Kennedy’s policies and Medicaid financing formulas.⁶⁸ In 1955, about 560,000 Americans were committed to public psychiatric institutions. At present, there are fewer than 40,000.⁶⁹

Many of these policy changes were sorely needed to reform a system that did not provide adequate protections against abuse of disabled individuals, such as the famed documentary by Geraldo Rivera documenting the squalid and inhumane conditions in 1972 at the Willowbrook State School for the developmentally disabled on Staten Island⁷⁰ and “Christmas in Purgatory,”⁷¹ a grim photographic essay on the inhumane conditions suffered by institutionalized people with severe intellectual disabilities.

This was all before the ADA was passed and before the 1999 Olmstead Supreme Court ruling that reinforced disability rights to be integrated into the community. Today there are significant protections for individuals that were not present during institutionalization of the 20th century. Thus, the disability community’s continued advocacy for community integration need not come at the expense of adequate inpatient beds for those who have severe needs on the continuum of care spectrum.

This shortage of beds is felt most acutely for psychiatric care and is directly caused by a provision in Medicaid in place since 1965 that limits beds in “Institutions of Mental Diseases” (IMDs), which are specialized psychiatric hospitals. The law prohibits IMDs from billing Medicaid for care given to adults at a facility with more than 16 beds. The idea behind the law was for states to assume this cost and make psychiatric care more community-focused, however, the result was that hospitals stopped providing these services at their sixteenth bed.

The average among the 34 Organization for Economic Co-operation and Development (OECD) countries is 68 psychiatric beds per 100,000 people, while the United States’ average of 25 beds per 100,000 people — near dead last in OECD countries.⁷² As a result, emergency rooms, prisons, and, increasingly, the streets, have unfortunately taken on the burden of care for those with mental disorders. The cost to individuals is high because a prison environment is particularly harsh for disabled individuals or those with mental disorders,⁷³ where they also experience a higher rate of victimization.⁷⁴

A 2016 report by the Treatment Advocacy Center found that 44 states and the District of Columbia have higher populations of mentally ill individuals in their jails and prisons than they do in their public psychiatric facilities.⁷⁵ It also costs more to house mentally ill inmates and seriously mentally ill inmates incur new charges by virtue of their disability while in prison or on parole.⁷⁶

The good news is that technological advances of the past few decades have resulted in medical equipment that drastically improves the quality of life for individuals with disabilities. From cochlear implants in the 1970s to the promise of Neuralink83 today, medical technology and equipment allows people with disabilities to be more active in the community, experience less pain and enjoy their lives.

The bad news is that the payment systems for medical equipment has not kept up with innovation or societal expectations. As previously discussed, many individuals with disabilities already face challenges to economic mobility, and the cost and access to good equipment for those who need it exacerbates this.

The high cost of this equipment leads most individuals to seek insurance coverage either through private insurance or Medicaid and

Quality healthcare is vital to a person with a disability, but unfortunately the healthcare system is rife with discrimination and disrespect for equal dignity.

A 2021 survey of over 700 practicing US physicians found 82.4 percent of physicians reported that people with significant disability have worse quality of life than nondisabled

Researchers estimate that households with an adult with a disability that limits their ability to work requires on average 28 percent more income (or an additional $17,690 a year) to obtain the same standard of living as a similar household without a member with a disability.⁹⁴

A person’s financial stability comes not only from their income, but also from their living expenses. A person with a disability and their household incurs extra expenses such as caregiving, medical therapies, pharmaceuticals, medical devices and their maintenance, acquiring and maintaining service animals, dictation tools, more expensive adaptive vehicles, food for a special diet, grocery delivery, installing ramps or renovations to the home or more expensive housing that is accessible and convenient.

These costs vary widely depending on the person’s type of disability and existing social supports. For those with disabilities that are lifelong and require a lifetime of caregiving and the inability to work at all, the material cost to families and caregivers can be very high. These families ought not also have the increased and undue burdens of redeterminations and asset limitations that keep them from providing long-term supports for their disabled dependents for life.

The IRS allows taxpayers to deduct out-of-pocket medical expenses that go above 7.5 percent of their Adjusted Gross Income (AGI). While the 2017 Tax Cuts and Jobs Act (TCJA) lowered this from a previous 10 percent threshold, this is still a high bar to meet for a population with a notably lower average income.

If both the cost of living is so much higher and the income levels are lower for people with disabilities, then the social safety net and the tax code should account for this.

Benefit cliffs are an unfortunate part of the American social safety net system and occur when an individual discovers that they will become worse off economically by earning more money. This occurs when the loss in benefits exceeds the additional take-home pay from a job or a pay increase.⁹⁷

Nowhere are cliffs more pronounced than with disability benefits. When someone is receiving multiple benefits, such as a combination of SSI/SSDI, Medicaid and food stamps (SNAP), the cumulative worth of those benefits can be a very high dollar amount. The job or pay raise they would need to overcome the benefits cliff would need to cover the cost of their caregiver and private health insurance, cash assistance from SSI that is somewhere near $1,000 per month, and food assistance that is around $740 for a family of four. In many cases that number can exceed $100,000 a year in income, an insurmountable entry point into the workforce for a person with a disability.

There is also an added layer of insecurity that comes with joining the workforce and losing benefits. A person with a disability may have waited for months and waded through a complicated bureaucratic system with the aid of a benefits lawyer to obtain benefits in the first place.

The varying eligibility and limitations of these safety net programs can be so complicated that the very risk of losing them may be enough to keep a person with a disability far from the path to work.

This is demonstrated by the limited success of The Ticket to Work and Work Incentives Improvement Act of 1999.⁹⁸ Ticket to Work funds community-based organizations to provide work incentives and training and allows an individual to keep their SSI/SSDI and Medicaid/Medicare benefits for up to 9 months with a gradual phase down while on the path to work. The program provides some combination of job coaching, job counseling, training, benefits counseling and job placement through a variety of approved providers.⁹⁹

The outcomes of the program have not been overly promising: In 2021, the Government Accountability Office (GAO) estimated that 5 years after starting Ticket to Work, participants’ average earnings were $2,451 more per year than that of similar nonparticipants. However, the majority of participants remained unemployed 5 years after starting Ticket to Work.¹⁰⁰

The earlier quoted BLS report found that the biggest barriers to work reported were a person’s own disability, lack of education or training, the need for special features at the job and lack of transportation. Many of these problems can be addressed by features of a