Beyond Opportunity: The Future of Americans With Disabilities

Hillary Clinton was right to remind Americans, during a recent speech, that the true test of a society is “how we treat our fellow human beings, especially the most vulnerable among us.” She then proceeded to lay out a plan to systematically help those with disabilities acquire education and find jobs. But a careful study of Americans with disabilities makes clear one fundamental danger: If we make access to economic opportunity and labor market participation the primary goal of government policy for people with disabilities, we are going to exclude millions of Americans. Ultimately, all nations, no matter how robust their social markets, also need strong safety nets if they are to fulfill the principle Clinton described.

Consider Jane, a research subject whose name I have changed. In 2003, when I first met her, Jane lived in a small town in northern Idaho. An energetic, gregarious widow in her late forties, she supported herself by working at a local café. Over the next several years, as local businesses fell beneath the charge of national chain restaurants, the café’s business declined and Jane’s hours were cut. She picked up additional part-time jobs cleaning houses and doing laundry in a nursing home. None of her employers offered health insurance, yet she earned too much to be eligible for Medicaid in Idaho.

By the time she was in her mid-fifties, her health had deteriorated: She suffered a few bouts of pneumonia and experienced poor circulation in her legs. She still loved working, especially at the café (“It was my social life,” she told me). “But finally I couldn’t do it anymore … I had to stop because of my legs — you see my feet and ankles hurt and then turned black.” She was eventually diagnosed with diabetes by a doctor at a weekly volunteer clinic. The doctor told her that she had likely already been suffering from diabetes for a decade.

Jane applied for Social Security Disability Insurance (SSDI). At age 57, after several years of denied applications, she was officially deemed “disabled.” She then had to wait another two years to become eligible for Medicare. (There is a 25-month waiting period for Medicare entitlement, despite health problems that leave people unable to work.) During this time, she made do with whatever occasional free samples of medication the volunteer clinic had on hand.

When I visited Jane in 2015, she was no longer able to afford her apartment and had moved into a one room shack on the outskirts of town. Though she had worked all of her life, her SSDI allowance, based on past earned income, and Supplemental Security Income (SSI is designed to bring the monthly checks of low earners up to a minimal threshold) only paid her a total of $800 a month. This was not enough for her to make use of the car that sat — out of gas and in need of repair — in front of her house.

This formerly energetic woman was now housebound. She told me how much she missed going out to work at the café, but, she explained, “maybe that’s for the best.” She’d lost her teeth and couldn’t afford dentures, which are not covered by Medicaid in Idaho or by Medicare at all, and was embarrassed by the idea that her former coworkers and café patrons might see her. Equally devastating, without teeth, she can’t chew the healthy vegetables and whole grains that her doctor tells her are necessary for keeping her diabetes from further damaging her body.

Unfortunately, Jane’s situation is all-too-typical. In 2016, 14 million Americans under the age of 65 are officially deemed disabled by the Social Security Administration.

In Jane’s case, work (albeit cobbled together part-time jobs) was available, but lack of access to medical care thrust her into Disability. The Affordable Care Act (ACA) has brought millions of Americans into health-care coverage, but the legislation has had little impact on people like Jane who live in states that turned down federal funds for Medicaid expansion under the ACA. In non-expansion states, people who may well be capable of working continue to have to choose between a job and the access to health care that comes from Disability status. While a variety of factors likely come into play, it is telling that, for the most part, states that chose not to expand Medicaid eligibility have higher rates of individuals receiving Disability payments.

For Jane, SSDI is a lifesaver, but one that has come at high personal cost, imposing a stigmatizing label — “disabled” — that American culture and policies treat with a great deal of ambivalence. We Americans admire people who “overcome” their disabilities and show their “strong spirit” in contexts such as the Paralympics, yet disabled Americans are likely to remain poor throughout their lives. And, like Jane, applicants for SSDI routinely need to hire lawyers — who then keep a substantial part of retroactive payments — to “prove” that they are really disabled.

While the Disability system does provide a crucial safety net for millions of Americans like Jane, it is structured to reinforce existing inequalities. People who earned higher wages before they became disabled receive larger payments than low-wage workers, and the minimum payments are not sufficient for disabled people like Jane to live in dignity.

Jane is one of the 35.4 million Americans with disabilities eligible to vote in the November 2016 election. According to numbers computed by Rutgers professors Lisa Schur and Douglas Kruse, the number of eligible voters with disabilities has increased 10.8 percent since 2008 and there will be 62.7 million eligible voters who either have a disability or live with a household member who has one, more than one-fourth of the total electorate.

People with disabilities have received some attention from both campaigns. Trump’s public mocking of a disabled reporter remains a popular trope on the campaign trail. And Clinton, as mentioned, gave a speech this week outlining her commitment to bolster job opportunities and eliminate the “subminimum wage” paid to some people with disabilities. Yet specific policy proposals for those who cannot work remain few and far between.

With this in mind, what could have — or still could — make a difference for the better in Jane’s life (and in the lives of those who, like Jane, live with a disability)? Some specific proposals include:

• Expand Medicaid in all states so that working people do not need to go onto Disability to access health care.
• Get lawyers out of the application system for Disability. This should not be an adversarial process and no one should be taking a bite of the government benefits aimed at disabled Americans.
• Eliminate the waiting period for Medicare eligibility for people accepted onto Disability. It makes no sense to delay the health care that they, by definition, need.
• Include oral health care in coverage programs, including Medicare.
• Raise minimum Disability payments to reasonable levels.
• Encourage and expand meaningful work opportunities for people on Disability, as well as for people living with disabilities who neither need nor qualify for Social Security Disability status or are waiting to be accepted onto Social Security Disability.

As in all matters of principle, the devil is in the details. These policy proposals should be possible and straightforward to adopt. But most of all, they would spare Americans like Jane from a lifetime wasted in hopeless frustration, as they mourn the loss of jobs, of friends, of their health, and of their dignity.