(written by Ari Ne'eman for the Huffington Post, Mon 24 Aug 2009)
As the health care reform debate rages, we see a few old familiar chestnuts being dragged from the anti-reform fire. Critics of health care reform have expressed concern that increased government involvement in health care will crowd out existing private-pay health insurance. The idea is that when public funds are used to increase the availability of health insurance coverage, people will have a disincentive to pay for private coverage out of their own pocket and to work hard so as to be able to afford to do so. Similar objections were raised to the expansion of the State Children's Health Insurance Plan (S-CHIP), twice vetoed by President Bush and signed by President Obama as his second piece of legislation after being inaugurated. Yet for all their concern about disincentives when it comes to buying private health insurance, critics of health care reform fail to mention another kind of health care related disincentive -- the kind people with disabilities face when wanting to work.
For most Americans, employment is a vehicle for health insurance coverage, not an obstacle. For those lucky enough to have employers who provide health insurance, the connection is simple. For those whose employers do not provide coverage and who do not qualify for any government program, the only option is to hope that they can earn enough to purchase coverage on the expensive individual market. However, for many people with disabilities, the individual market for health insurance is not an option, due to the exorbitantly high premiums, exclusions on coverage for certain necessary treatments or even outright refusal to sell a policy to those with "pre-existing conditions."
This leaves prospective workers with disabilities in a horrible dilemma. For the majority of people with disabilities who cannot find entry-level work that provides health insurance, government programs are the only option. Yet, Medicaid's asset and income limits prevent many workers with disabilities from qualifying. Taking a job that pays enough to live on means losing access to health care coverage. Even as we have attempted to open the door to employment and community integration for people with disabilities through laws like the Americans with Disabilities Act and the Individuals with Disabilities Education Act (IDEA), insurance discrimination and lack of affordable health care serves to keep that door closed for too many.
Work is a crucial part of our lives. It helps define our identities, our social circles, our role in society, what we do with most of our time and our sense of self-respect. Indeed, one of the areas of common ground that disability rights advocates and conservatives share is a respect for the fundamental dignity of work. Yet, despite this, critics of health care reform give no consideration to this issue. They forget about the large percentage of the disabled population in this country that remains caught in a bureaucratic nightmare preventing even those capable of finding and holding employment from doing so for fear of being left without health insurance.
Maria is a 34-year-old elementary school teacher in South Florida with rheumatoid arthritis. To save money, her school recently announced a change to a new health insurance plan that will not cover the medication that keeps her condition manageable. Now she is faced with the impossible task of paying thousands of dollars a month out of pocket on a teacher's salary or quitting her job to qualify for public health insurance that will cover her treatments.
Ronald is a 26-year-old Autistic adult living in the Midwest. He wants to accept a job offer at a local small business, but the additional income would exceed the income limits on his Supplemental Security Income (SSI) payments, through which he qualifies for Medicaid. The small business can't afford to offer health care, so while he is willing to forgo the cash payments from SSI, he cannot afford to purchase his own insurance on open market. Even though Ronald isn't on any medications, he may still face prohibitively high premiums for the "pre-existing condition" on the individual health insurance market. Because of this and because his state doesn't yet allow people in his situation to buy into Medicaid, if he accepts the job offer he will be left without health insurance. He is thus forced to turn down the job and look for volunteer opportunities to pass the time instead.
Amy is a 22-year-old with a spinal cord injury living in North Carolina. She is currently in graduate school but worries about what will happen when she graduates. Tricare, the insurance program that covers members of the military and their dependents, pays for the attendant care she needs to continue living independently. Private insurance won't cover her and once she finds employment and is no longer listed as a dependent on her parents' insurance, she'll lose the assistance that makes it possible for her to get up in the morning, go to work and perform other activities of daily living. She is caught in a vicious catch-22. If she goes to work, she will lose the assistance that makes it possible for her to work and live independently in the first place.
While these people's names have been changed, their stories are real. This is not just the plight of a few people. This is the reality faced by millions of adults with disabilities who don't want to have to choose between getting health care and holding a job. According to the Government Accountability Office, there are approximately 11 million Americans on Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Bureau of Labor Statistics data show that only 23% of people with disabilities are participating in the labor force as compared to almost 72% of people without disabilities. While not all people with disabilities would be able to find and keep employment, a significant percentage of them can and want to, yet cannot do so by reason of discrimination, lack of support and bureaucratic obstacles -- particularly around health care. Is this fair? Is this just? And let us not forget, is it good for our country to keep so many Americans out of employment due to lack of affordable health care coverage with decent benefits? The answer to all of these questions is a resounding no.
Now, we must be realistic. The health care reform proposals on the table aren't perfect. People with disabilities are left out of many of the provisions around addressing health disparities, an issue erroneously assumed to only be relevant for racial and ethnic minorities. We have yet to see meaningful action in any of the bills on the table to address Medicaid's bias towards institutions and nursing homes instead of community living options that bring more quality of life. These are issues that must be rectified in one form or another before the final legislation comes together. However, such problems are fixable. Beyond that, there is much in the House and Senate HELP legislation that promises to radically improve the picture for people with disabilities. An end to discrimination and higher premiums for those with pre-existing conditions would drastically improve the opportunities for people with disabilities to buy health insurance in the individual market, thus removing one of the biggest obstacles in entering the labor force. A minimum benefits package that all health insurance plans must honor will keep more Americans from facing the dilemma now before Maria and countless others.Think of the potential benefits - measured in both quality of life and new taxpayers - from millions of current SSDI/SSI recipients finding employment. Senator Tom Harkin, the chief co-sponsor of the Americans with Disabilities Act and a man often referred to in disability rights circles as the "great emancipator" for people with disabilities, often points out that people with disabilities are one of the few groups that want to pay taxes, as doing so will indicate that the barriers to the world of work have been broken down. Indeed, many of health reform's most ardent critics should know this already - after all, disability rights advocates are not the only ones who talk about work incentives and public benefits. Conservatives pioneered that conversation and should not forget about it in reference to disabled adults and health care. As long as we continue to see delaying tactics rule the day when it comes to passing comprehensive health care reform, millions will remain caught in a bureaucratic trap that makes no one happy. Enough delay -- we need health care reform now.