Disability, Healthcare, and Medicaid

The U.S. House of Representatives is set to vote Thursday on the American Health Care Act. The AHCA is proposed by Congressional Republicans and President Trump to "repeal and replace" the Affordable Care Act, also known as "Obamacare."

Aside from pure partisanship and dizzying figures, there are several broad angles from which to evaluate the AHCA:

Young vs old ...
Poor vs rich vs middle income ...
Employed vs unemployed ...
Government vs private sector ...
Costs vs compassion …

Hovering over all of this is a more basic question: Should quality health care be a human right, or is it something to be earned, a motivation for hard work and success?

Even less understood or discussed is what health care means for a specific population of Americans … people with disabilities. Here, then, are a few key points about how the disability community views the health care debate:

1. There is no sugarcoating the fact that as a group, people with disabilities cost more in health care than pretty much everyone else. And, there is little we can do individually to trim those costs. Healthy lifestyles help a little. Cures, therapies, and technologies occasionally produce a breakthrough or two. But by and large, disabilities aren't fixable in any significant, permanent way. Our needs are what they are.

2. Budgeting our needs with Medicaid per capita formulas or block grants, and reducing overall Medicaid funding by over $800 billion, would mean pitting people with disabilities against each other ... my needs against my neighbor's. It would also leave us all crossing our fingers every year, hoping for enough state revenues to keep us living and working in our own homes, and if not, being forced into nursing homes or family care if there is a budget shortfall or spike in demand.

3. Most long term programs for people with severe physical impairments, developmental disabilities, traumatic brain injury, or autism are paid for largely by Medicaid. It is the financial backbone of these critical long term care services, and there is no viable alternative should Medicaid be restructured, limited, or cut significantly. Market-based, for-profit models for these services simply don't exist, except for the most wealthy families.

4. Health insurance for people with disabilities isn't something we want "in case we get sick or injured." That’s already happened for us. Most of us use health insurance constantly, just to keep living and functioning. It is not partisan exaggeration to say that reducing or limiting coverage for people with disabilities would cause many of us to die. Those who didn’t would still see the delicate structures we have built for fulfilling, independent lives shattered.

5. Health insurance for people with disabilities isn't a reward for hard work and success. It is a prerequisite for these things. We can't work hard and earn money without first having health care. For many of us, this includes daily help from another person in order to simply get out of bed, go to the bathroom, and prepare for the day ... services that can only be paid for long term by Medicaid.

Choice, free markets, work ethics, and mandates have little meaning when applied to health care for people with disabilities. Our needs are pretty much set in stone, and they are either met or not, almost entirely determined by how health care policy is designed. We urge lawmakers and citizens everywhere to consider carefully how their beliefs and assumptions about health care apply differently to people with disabilities, and at the very least to vote with care and full awareness.