ADA 30 – The Next 30 Years

Reprinted from the Disability Policy Consortium Weekly Newsletter on July 27, 2020 by Colin Killick, Executive Director. The changes he describes will need new legislation and greater enforcement of laws. These needed changes are exactly why you need to vote!

It’s incredible to think that it’s been 30 years since the passage of the ADA. So many eloquent words have been said over the past weeks and months about the titanic impact this law has had in making our world more accessible and quite literally opening doors for our community. We’ve also seen major milestones lately for the public awareness of what it took to make the ADA, and Section 504 before it, happen, most recently in the huge success of Crip Camp. As the world is learning, people with disabilities were not handed our rights, we fought for them, and defeated some of the most powerful commercial interests in this country to make them a reality. We’ve seen that power again and again in the years since, from the fight to save Medicaid in 2017, to defending PCA access and doubling the size of the AHVP program here in Massachusetts. As Bob Kafka put it, “if we believed that ADA is the power and we are the recipients of its strength, rather than we are the power and ADA is a tool for us to use, I fear we may still have a long way to go.”  For all the massive changes the ADA wrought, there are still huge hurdles we have to clear to achieve full equity for our community. Therefore, I want to lay out just two of many areas that I hope we will be looking back on as huge victories 30 years from now.

Genuinely Integrated Accessible Living

Some of the worst discrimination our community still faces is housing segregation. People with disabilities in this country have far less choice in where to live than those who do not have disabilities, for a variety of reasons. Deliberate discrimination on the part of landlords is still a major problem, as testing by HUD and other agencies has shown. This discrimination has also been institutionalized in some public housing systems, including here in Massachusetts, in the form of quotas that limit the percentage of under- age 65 people with disabilities who can live in Elderly-Disabled Housing buildings. These quotas are often the direct result of fearmongering against people with mental health diagnoses, falsely claiming that they pose a danger to their elderly neighbors despite there being no statistical evidence to back this up; I was once in a meeting with a now-former elected official who told us point-blank that if we would just agree that people with mental health diagnoses did not count as disabled for housing purposes, they could give us “all the units for people in wheelchairs you want.” (Obviously, we said no!)

Another major issue in this area is the severe shortage of housing that is both affordable and accessible; the ADA accessibility requirements for apartment buildings largely only applied to those constructed after the bill’s passage. As a result, the older housing stock (including almost all single-family units, which are very rarely required to be accessible) is sometimes affordable but rarely accessible, while the newer housing stock is frequently accessible but very rarely affordable, particularly in major cities where luxury developments constitute a huge share of new construction. Finally, one of the biggest issues is the continuing segregation of millions of people with disabilities into Nursing Homes and other congregate settings–very often not because they need to be there, but because bias in the payment structure of state Medicaid programs means nursing homes are the default for people who need Long-Term Services and Supports, while getting PCAs and other in-home options requires jumping through hoops. That system has robbed people with disabilities of their independence, their dignity, and during this pandemic their very lives.

To address these issues, we’ll need multiple major reforms. State and federal authorities should conduct frequent investigations of landlords for discrimination against disabled renters (using proven effective methods such as paired testers) and punish landlords for discriminatory behavior. We need to end discriminatory quotas in public housing, and create affordable accessible housing via new regulations on housing developers to bolster access (like the AAB Bill we continue to fight for in the legislature) and increase affordability (via tools like AHVP and expanded affordability rules. Finally, we need to put an end to the nursing home as we know it, replacing it with vastly expanded access to in-home supports, and where absolutely necessary, small specialized facilities that have real infection controls, real protections for residents’ rights, and which are geared always to get people back into the community safely as soon as possible.

Breaking the Link Between Disability and Poverty

Arguably the biggest way that people with disabilities are repressed in this country is that we are far more likely than our non-disabled peers to live in poverty. As with the issue of housing, this has multiple causes. Employment discrimination is rampant against our community; according to a landmark 2015 Rutgers study, people who disclose a disability in their cover letter are 26% less likely to get a job interview, even when their disability is totally irrelevant to the position they are applying for. Flaws in our Special Education system also lead to many students with disabilities being segregated from their non-disabled peers and steered away from taking the kinds of risks that could lead to economic independence. Perhaps the biggest barrier to the economic empowerment of people with disabilities, however, are the poverty traps built into our disability benefits programs. As Stapleton et al. lay out here, our federal disability benefits programs are stuck in an outdated and discredited medical model that defines disability as an inability to work, and ties benefits to income in a punitive manner that punishes people for succeeding by yanking away the supports they need to survive.

To fix this problem, we need a variety of policy changes. As in housing, we need aggressive investigation of employment discrimination and punishment of firms that engage in it. We need to shake up the way we educate young people with disabilities to promote inclusion and achievement. Most of all, we need to rethink the way our government thinks about disability. Instead of having a fractured landscape of disability programs with varied and contradictory definitions, we need a single federal disability benefit based on a commonsense definition of disability that does not reply on income. Once someone was enrolled, they would stay involve, and what benefits you received would shift smoothly as your income and the level of support you needed changed, rather than dropping off abruptly to nothing once you crossed a particular threshold. If we succeed in this approach, then thirty years from today we may well be able to look back at a world where the promise of the ADA has been fully achieved, one in which having a disability has no bearing on the likelihood that you will be poor, or homeless, or victimized by violence, but it rather simply one more aspect of your identity as a human being.