Wednesday, August 5, 2015

Rethinking Disability: a policy proposal for our time

At 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 which is mostly 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 enables 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 severe 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 attendance 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 attendance 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 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 on the employment situation of people with disabilities, and recommendations of the National Council on Disability regarding the same.


  1. Care for Seniors central priority is the client's sustained and enhanced quality of life. In doing so, this agency provides professional guidance in the home care and facility placement selection process every step of the way, if you want more info come and visit our website

  2. Hi my name is Veronica,

    Thank you for helping me more aware of the issues that even the wording within the law has on groups affected by them- specially, those are who disabled in this case. It's pitiful to see how our current definition of disability blinded follows these antiquated, provincial-minded stereotypes about the handicapped population. Many fail to recognize that even though who are severely physical disabled find ways to work and form the foundation of some of the biggest companies in the world just to pay for their medical needs. I do hope that through awareness and concrete plans to petition against these discriminating laws, this population can find peace and comfort.

  3. Hello my name is Siri,

    I am currently in a City Planning and Public Policy for Disabilities class. What you are mentioning is very interesting and forces anyone with a disability into the medical model and disregards people that seem normal on the outside while completely deciding that people with disabilities only need a health solution, focusing on the "cure" of disabilities which simply doesn't exist. The Independent Living Movement actually began in UC Berkeley and has organized and united a common front to help stop the discrimination and raise awareness for the disabled, physical and otherwise. Further, there are many charities and organizations aiming to protect and aid people with disabilities, however doing nothing to contribute to the Independent Living movement and pushing for change on a governmental level, which has begun shifting and changing the skewed and outdated view of disability.

  4. Thank you for drawing our attention to the variety of misconceptions that surround disabilities. I personally did not know about any of these limiting and narrow laws that hinder individuals who are disabled from reaching their full potential. I appreciate you bringing light to the complexity of the issue and raising important points about the ramifications of such discriminatory policies. Besides there being a clear need for policy revision what other recommendations would you make for a path forward regarding this issue? Also how can the average citizen be more informed about disabilities and how to support people with them?
    -McCalister Russell

  5. Hi my name is Karen,

    I very much agree that the way our policies on Disability benefits are not well defined and do not truly cater to those who actually do need it. Obviously, people with disabilities can and do work in many cases, nut just because they do, doesn't mean that they are not in need of extra help. And I do think that the way the policy handles how they decide who gets disability is obviously flawed and inhibits those who do need it fro obtaining these recources only because the law narrowly defines who is disabled which is not accurate at all.

    Good blog! It has me thinking.

  6. Thank you for illustrating an example of policies that have no basis in the real, lived experiences of the people most concerned. I think that the problematic nature of the rules around who in the disabled community receives Social Security is perfectly indicative of the larger system of aid in the United States and abroad. People are categorized, either determined a victim—needing of protection—or you are not and have no access basic resources. This serves to reinstate the dominance of white, cisgender, able-bodied people over people who do not fall into these dominant identities. In effect, those needing support are led to be viewed as less capable or less human because of their marginalized identity. You put it perfectly when you said, “There is no possibility of partial disablement you are either completely and totally disabled, or not.” Unfortunately, in most policies and practices today there is little room for the grey areas.

  7. Thank you for drawing attention to this topic as I feel that it flies below most people's eyes the majority of the time. What may have once been relative and applicable is now outdated as new work, technologies, and ways of living have been introduced. On top of that, the governmental policies of the state or nation continue to change and amend themselves. I agree that the current definition by Social Security is too black and white. This raises doubts and criticisms from others, whom the definition does not affect directly, but as you said, this is a large misconception that a lot of people have about disability. The definition by Social Security is limiting, and completely undermining the abilities of disabled people and creating space for a gray area is justifiable.


  8. Hi Jason,

    Thanks for bring attention to such an important topic that many of us are unfortunately ignorant about. I hadn't heard anything about the topic but can see the urgency to change governmental policies and the definition of the word disability. The definition used today presents many of the assumptions and stereotypes associated with people with disabilities. The definition makes assumptions that have been proven wrong and undermines all the work activist have created surrounding the topic of disabilities.


  9. Hi,

    My name is Sabrina and I wanted to say that I appreciate your calling to attention to one of the profound and glaring ways our limited policy system has failed those in our communities who can most benefit from a supportive social system. When policy makers operate in dichotomous definitions, they fail to acknowledge the complexity of human life. In this regard, we create and perpetuate a system that categorizes us into harsh boxes and fails to meet our needs. Thank you for this post and the work you do.