July 2020 marks the 30th anniversary of the Americans With Disabilities Act. I can still remember watching George Bush, Sr. sign it into law on TV. I was in middle school, and my mother was a local disability activist, trying to improve accessibility and inclusion in our small college town. We were both so hopeful about the future and what my life would be like in an inclusive world. I could never have imagined what the next three decades would hold for me: graduating from Stanford University, losing my mom to cancer, moving around the country pursuing my goals, surviving abuse, finding a rewarding career here at The Mighty, and now reflecting on the past 30 years as my life hangs in the balance during a global pandemic.
I’ve experienced the power of the ADA, and I’ve seen some of the dreams we had that day in 1990 come true. But I’ve also experienced the many ways the ADA falls short, and how enormous systemic barriers prevent many disabled people from thriving despite vast improvements in accessibility. And that’s why I believe we need a new disability law, a second ADA, that improves on certain aspects of the original but also enshrines certain basic rights the first one never addressed at all. Let’s call this law the Americans With Disabilities Human Rights Act (ADHRA).
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My primary disability is physical, cerebral palsy, so I know I cannot address all perspectives with this article. But I hope it gives advocates and people just learning about disability some understanding of why so many people continue to struggle despite the ADA, and the ways we are still regularly denied the rights accorded to other citizens. To achieve the promise of the ADA, we need:
The Right to Stronger ADA Enforcement
The ADA is a powerful law, but it is also rather toothless. It introduced the concept of reasonable accommodations, but then did not define them clearly enough, so we have businesses constantly arguing about whether an accommodation is reasonable. I believe making the ADA stronger should start with defining specific violations that warrant increased enforcement, and outlining new penalties for non-compliance, such as withdrawal of tax breaks from businesses and redirecting federal funding to states to mandatory accessibility initiatives.
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Which continued violations are so egregious, and the solutions so reasonable, that they should simply no longer be a problem 30 years after the law was passed? Let’s start with businesses with one or two steps at the entrance, and any business that remodeled indoor areas but did not make restrooms accessible. I don’t want to see mom and pop stores persecuted for having a paper towel holder an inch too high or a grab bar an inch too low, but there is no justification for not providing basic physical access in 2020.
Even more importantly, we need to hold state and local governments accountable for accessibility failures, such as cities with public transportation that is less than 75% accessible (New York City subways, I’m looking at you) and any community that has not installed curb cuts at all intersections and audio signals at pedestrian crossings with traffic lights. Again, they’ve had 30 years and the excuses need to stop.
Related: How the ADA Has Made Self-Care More Accessible
The Right to Access Via Technology
When the ADA was passed, the internet barely existed, and we had no way of knowing about the tremendous technological advances that would occur. The internet has made the world more accessible, but in certain ways it is not living up to its promise. For example, many websites are not accessible to blind people who use screen readers, and many online videos do not provide adequate captioning for deaf viewers. Although courts have found that e-commerce websites are places of public accommodation under the ADA, the law still needs to be updated to clarify that digital accessibility is a right and specify how it should be implemented.
Technology has also created new employment opportunities, and ADA employment law should be updated to reflect the reality that many jobs can now be done from home. The many businesses that successfully transitioned to working from home because of COVID-19 provide plenty of evidence that remote work must be considered a reasonable accommodation for a variety of jobs. Likewise, educational institutions should be required to offer online classes as a reasonable accommodation to students with disabilities even after the pandemic ends.
The Right to Access Benefits Programs
The SSDI and SSI programs in the United States are broken. It often takes years to get approved, and many people are denied the first time, requiring them to endure a protracted battle through the Social Security bureaucracy and courts. When they do get benefits, they receive significantly less income than the federal poverty level, and if they marry or receive financial help from someone else, they could lose their benefits. The same applies to Medicaid. These limitations prevent people from disabilities from working, getting married and achieving any sort of stability in life. Arguably, they are the biggest factor holding people with disabilities as a group back today.
So how do we fix this? I believe it starts with increasing the monthly income. Disability income should, at minimum, place someone just above the poverty line, and include extra support such as rent subsidies in areas with a high cost of living. Let’s get real here — no one is “living it up” on SSDI/SSI now, and just above the poverty line means more stability but is still not enticing to those supposed “lazy” people who some believe try to get disability benefits.
Second, the qualification process needs to be more efficient. Currently, only people with certain conditions can qualify for Presumptive Disability, Compassionate Allowances or the Quick Disability Determination program. I benefited from quick disability determination because cerebral palsy is on the list of presumptive conditions; I “only” waited nine months for benefits. These programs should be expanded, so anyone with sufficient medical documentation can receive presumptive eligibility within a month of application. They should rely on documentation and patients’ doctors instead of bureaucrats without medical training when making final determinations. And unless there was intentional fraud, people receiving presumptive disability should not have to repay benefits if they are later found ineligible.
The Right to Work While Keeping Benefits
The current Social Security concept of “disability” is based on “ability to work,” an abstract concept that is difficult to evaluate and puts lifelong limitations on disabled people. I believe it’s long past time to change this to include alternative eligibility criteria such as physical limitations, extent and frequency of hospitalizations, need for in-home support, monthly out-of-pocket medical expenses etc. A better framework would be: Does this person’s disability have a significant negative financial impact on their life? Do they need financial support and/or specialized services to live in the community? If so, they should be able to qualify regardless of employment status.
Some people on SSDI/SSI truly cannot work at all. But many people with disabilities don’t fall under “can’t work” or “can work” — we are somewhere in the middle, with access to healthcare and support services determining how much we can do. There are ways to work while keeping benefits, but they are overly cumbersome and limit the amount you can earn. Those of us who can find some type of employment have to limit our work because doing “too much” will cause us to lose our benefits, even if we can’t survive without them. But it doesn’t have to be this way.
As an example, we can look to the Veterans Administration military service-connected disability system. Although it is a bureaucratic nightmare just like Social Security and needs many improvements, the VA disability system allows for partial disability and considers employability separately from disability. You can have a 100% disability rating under the VA and keep receiving financial support while working — or you can qualify for “individual unemployability” with a partial or full disability rating. They also provide additional funding for veterans with disabilities who need assistance with daily tasks like bathing and dressing, again independently of their employability.
The Right to an Independent, Stable Income
Under the current system, disability income is supposed to replace work income and Medicaid is supposed to replace employer-sponsored or Marketplace health insurance. But unlike income and insurance from a job, they can be taken away if the recipient marries. This means people with disabilities on SSI and/or Medicaid are de facto prohibited from marrying, and some are forced to divorce so they can receive support services. The income and asset limits for these programs are so low that even having a spouse who is working poor or just over the poverty line can render a disabled person ineligible.
It may seem logical at first that an able-bodied spouse should financially support their disabled spouse, but what if their “too high” income isn’t enough? This is an all-too-common problem. For example, my Medicaid-funded in-home care would cost over $4,000 a month out of pocket, yet if I were to get married, I would lose that benefit even if my spouse only made $3,000 a month. And what if a spouse is abusive? Unfortunately, I’ve known many disabled people who got trapped in controlling relationships because they had no money to move out and couldn’t qualify for SSI due to their spouse’s income.
Disability benefits should not depend upon a spouse’s income or assets. If someone can’t work and/or has high medical needs, they should have the right to income of their own and to receive services without bankrupting their spouse. If a family is well-off, it may be reasonable to charge them a fee, but it should be comparable to a health insurance premium, not decimate their income.
The Right to Live Where You Choose
No, I’m not suggesting that every person with a disability be given their own mansion on the beach (although I wouldn’t mind…). Living where you choose simply means that a person should have the right to receive healthcare and support services, known as “home and community-based services,” in whichever living setting they prefer: their own home, such as a house or apartment, with family, or in a congregate setting such as a group home or nursing facility.
Currently, people with disabilities and seniors who need help with tasks such as dressing and bathing are often forced to live in nursing homes because services are not available elsewhere. This primarily occurs because Medicaid has an “institutional bias” — it requires states to provide nursing home care, but not in-home care. Every state has an in-home care program, but many have waiting lists, leaving people with disabilities trapped in nursing homes or going without essential support. As of 2017, about 707,000 people were on waiting lists for home and community-based services nationwide.
In 1999, the Supreme Court ruled in Olmstead v. L.C. that unjustified segregation of people with disabilities in institutions such as nursing homes and psychiatric hospitals constitutes discrimination and violates the Americans With Disabilities Act. Therefore, a person who wishes to receive services in their home and community rather than an institution has the right to do so, provided those services can be reasonably accommodated by the state. A law guaranteeing the human rights of people with disabilities should end these waiting lists, and also require Medicare and private insurance to cover home and community-based services, so people who make too much money to qualify for Medicaid could get the support they need. Or we could actually pass Medicare for All, or even All Who Want It, and ensure these services are included.
Enshrining this right also requires guaranteeing higher wages for home care workers over the long term, perhaps 1.5 times the local minimum wage with additional pay for those performing more skilled tasks such as lifting, injections, wound care, ventilator management etc. These positions should pay enough to interest and retain dedicated, skilled workers; it should be a career, not a low-wage job. Does anyone think $9.35 an hour is fair for work like this? That’s what the state I live in paid caregivers until February of this year, when they raised it to an improved-but-still-inadequate $12.86. Some fast food restaurants pay better!
And before you say “but the cost…” studies show that on average, it is less expensive to provide care in someone’s home than in a nursing home.
A bill that would address many of these issues, the Disability Integration Act, has languished in Congress for years despite the efforts of the disability community. You can find out more about it here.
The ADA was revolutionary, and I feel fortunate to have witnessed the changes it has brought. People with disabilities are now woven into the fabric of society; you will see us out shopping, raising families, going to music and sports events, and riding trains and buses. You can find us in every profession, and even representing our communities in Congress. But too few of us have been able to achieve the American dream because the system still equates “disability” with “inability to succeed.” To truly thrive, Americans with disabilities need more than physical barriers to be removed. We need our right to live independently to be affirmed by the government, businesses and society in general. I just hope it doesn’t take another 30 years.
Read more stories like this on The Mighty:
How Government Policy Makes People With Disabilities Live in Poverty
What Disability Pride Means to Me
Check Your Able-Bodied Privilege
Will COVID-19 Adaptations Create a More Disability-Inclusive World?