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Independent Living News & Policy from the National Council on Independent Living

Rethinking Disability: A Policy Proposal for Our Time

Source: Justin Harford, NCIL Employment Subcommittee Co-Chair and Author of Blind Yanqui Reflections

CareerACCESS logo - Career ACESSAt the Annual Meeting of the National Council on Independent Living in July 2014, a delegation of approximately 700 individuals with disabilities passed a resolution urging NCIL to push for a redefinition of disability as it relates to the Social Security Act. Since 1982, NCIL, a cross-disability organization that is populated by those whom it represents, has been one of the most significant voices of the disability community in Washington DC, advocating a variety of issues from public transit, to employment. Interest in redefining Social Security’s definition of disability over the last year with organizations like National Council on Disability and the World Institute on Disability has grown. That little section in chapter II of title 42 of the US code has had all sorts of far-reaching effects in the world of employment for people with disabilities since 1956, and we must update it.

As it is, disability is defined as a medically determinable physical or mental impairment, expected to last longer than 12 months or to result in death, and which prevents the individual from doing work of any kind. There is no possibility of partial disablement – you are either completely and totally disabled, or not. The first question that adjudicators ask is whether or not you are working, and your very character as someone who is employed is enough to disqualify you immediately.

Mundane as it may sound, the way that the Social Security Administration delineates between who is and isn’t disabled not only impacts whether or not someone can get on cash benefits, but a variety of other important matters as well. It also factors and eligibility for Medicaid, a federal program that offers personal and health care services to people with disabilities and people on limited incomes. Personal assistance services are what enable individuals with disabilities to take care of activities of daily living including bathing, grooming, eating and getting out of bed among other things. A personal attendant might cost anywhere between $20,000 and $30,000 per year. Medicaid is not only the only way for someone to get these kinds of services, it is also the only resource for covering expensive medical costs such as catheters, which can go for $1500 per month, and which are not covered by private insurance. 

The explicit definition of disability in title 42 leads to all sorts of implicit assumptions about what disability must involve. If disabled people can’t work, why do they need personal attendant hours at their job? Why would someone who is working require disability related supports like assistance buying durable medical equipment? If you have a job, you must not need personal attendant services or specialized medical assistance.

There lies one of the greatest misconceptions in the system today, that the severely disabled do not work. In fact, even people with the most significant disabilities can and do work. People who have no control from the neck down, people who cannot get themselves out of bed, or use the toilet without assistance conduct research, direct organizations, teach, and lead whole social movements, and their personal attendants are a fundamental part of their success. People who cannot walk, and who have very high monthly medical expenses from equipment including wheelchairs and catheters are involved in a variety of professions including social services, education, policy and law.

However, and even larger number of their peers are barred from these opportunities, or severely curtailed, because of the perverse way that there personal attendants or medical insurance can get yanked if they start working. There is no doubt that people with disabilities as well as anyone else are always better off employed then unemployed. They pay taxes, have more money to spend, and use the health care system less, not to mention that they are a lot happier. Nevertheless, if you take on an entry-level position earning $40,000 per year, you are never going to be able to come up with $30,000 to pay for personal attendance or $18,000 for recurring medical costs. Yet this is precisely what you are expected to do if you are not fortunate enough to live in a state like California, where you can earn up to $59,000 per year while retaining your Medicaid. It is no wonder that one of the most significant fears about going to work expressed by these groups is the fear of losing healthcare. The possibility of being shouldered with these costs makes the notion of gainful employment almost completely impossible for some individuals, not because of their disability, and not because they could not work, but because the long-term services and supports that they would need to experience success were simply not designed with the workplace in mind.

The current definition of disability under the Social Security Act has left us with a series of outdated and misguided assumptions about the true capabilities of people with disabilities. Consequently, it has left us with a series of programs, Medicaid being one of the best examples, which do not fully support beneficiaries in reaching their full potential, and possibly even getting off of benefits. It is why there has been virtually no movement in the abysmally high unemployment rate of disabled people, at 64% according to the 2012 Current Population Survey, since the Americans with Disabilities Act was signed 25 years ago. It is why America needs to reevaluate the way that disability is defined in public assistance, which has as much value for helping people to keep jobs as well as for helping those without jobs.

Take a look at Sen. Tom Harkin’s commentary (PDF) on the employment situation of people with disabilities, and recommendations of the National Council on Disability regarding the same.

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