Healthcare apartheid and quality of life for people with disabilities

The sizzling debate on healthcare reform has very little to do with me as a person with a significant physical disability, yet it fuels the fire in my belly. I am well insured because I work and supposedly have access to some of the best healthcare in the world, yet I continue to receive, and suffer from, some services that are second-class for several reasons. Our current system is best prepared to deal with acute conditions; those of us with multiple chronic conditions are mostly left on our own to manage a bevy of specialists, each with their restricted, though extensive, knowledge and limitations in their practice. Trying to find a generalist who has knowledge of wellness in the context of disability is like trying to find a tofu burger at a Texas barbecue. There is nothing in the current system of medical education that prepares physicians on how to keep people like me well. As a result, when I go to see my internist with concerns about a seemingly common problem, for example, stomach pain and fatigue, it’s just so easy for her to say ‘‘That’s to be expected with such an extensive disability.’’ Aside from being an easy out, disability can mask possibly serious symptoms. The system lacks incentives to look deeper into a seemingly simple but potentially complex problem and consult with my other specialists to rule out, identify, and treat. Another fundamental reason for the second-class services that are available to me is the entrenched resistance of the medical industry to compliance with the spirit of the Americans with Disabilities Act. Yes, you will find all the obligatory ramps and parking spaces, but where can you find an elevating exam table or a platform scale? Much has been written about how the absence of accessible equipment limits quality healthcare for people with disabilities, especially women [1, 2]. There is no mystery about why I haven’t had a mammogram in more than 10 years—I simply can’t fit into the machines! I hardly have a right to complain, though, when I look at the true victims of healthcare apartheid in our country— people who must rely on Medicaid or charity care. Although providers of healthcare to those who live below the poverty level try desperately to meet the needs of their patients, the demand is overwhelming. At least I don’t have to spend a whole day in a waiting room to see a doctor, or wait 3 months to get an appointment for a pelvic ultrasound and then another three to get the results. The problem of limited choice of doctors is paramount with Medicaid. Only a little more than half of physicians (53%) reported their practices were accepting all or most new Medicaid patients. Fewer than six in 10 US physicians (59.1%) reported providing charity care to patients in financial need, spending an average of 9.4 h/month (4% of their time) delivering free or reduced-cost care [3]. And the opponents of health insurance reform complain that it will limit their choice of doctors. What stokes the fire in my belly the most, however, is the fact that in order to receive even healthcare services that are sub-par, you are forced to stay poor. This is one of the major reasons for the unconscionably low rates of employment among women with disabilities—only 30.7% in 2003 [4]. They are uninsurable in the private sector so they cannot afford to work and risk losing the only care (government funded) they can get for their disabling This is an invited Patient Voice commentary.