Having it all. A vibrant life in the community of our choosing. A job where we are respected, where we can grow and where we are accommodated. A house that is comfortable, aesthetically appealing and accessible. Transportation that works seamlessly and goes where we want to go. Entertainment that represents us and no longer demeans or disregards our existence.
I know that’s what I am fighting for. However, I also know that for so many people in my community—the community of wheelchair users in the United States—behind the seemingly insurmountable struggle to enjoy these things on equal ground is a lack of affordable personal care.
For example, young professionals living with quadriplegia and paraplegia are coerced into making a financial Hobson’s choice (a choice in which only one thing is actually offered) around receiving personal care, where all paths will lead to impoverishment. Personal care paid for out of pocket is prohibitively expensive.
Medicaid coverage requires you to impoverish yourself and this option can force people to renounce their professional calling or deeply limit their working life, thus denying all of society the benefits of their full contributions. People with disabilities are often faced with structural impossibilities—whether they are literal ones in the built environment or social ones created by institutions. It’s more than time to get rid of this one. It is time that Medicaid forcing us to remain poor is changed. And the people with the power to change policy can make it happen.
A sensible system would provide for the personal care and supports that would enable members of our community to enhance their own lives and own their power as economic actors. The personal advancement it would unlock for people living with quadriplegia and paraplegia would be immense—and would almost certainly pay for the accommodations which make economic sense for us and the economy in general.
Congress has been talking about facilitating work by people with disabilities who need support services—such as the services of personal care attendants (PCA)—by disregarding some or all of the income they earn, making them eligible to participate in publicly-funded PCA programs. So far, much of this has remained talk. While so many people with disabilities struggle to stay in the labor force and receive personal care assistance, with limited exception, the situation has stayed the same for decades.
In the overwhelming majority of Medicaid service areas in the United States, even modest financial assets make people with disabilities ineligible for PCA services. They must spend their earned income on PCA services until they are poor just to become eligible for Medicaid. Work seems like a futile endeavor when the most basic provisions that can lead to the American Dream are so out of reach—let alone anything beyond the basics.
United Spinal Association supports reforms that would enable the system to meet people with disabilities where we are, rather than create a race to the bottom in order to obtain essential PCA services. The game-changing idea here is that individuals would be asked to pay a certain premium, tied to their income level and personal financial assets, in order to qualify for Medicaid coverage of their PCA services.
This is not pie-in-the-sky idealism. Various states across the country have implemented these reforms for their residents, Massachusetts and Washington to name a couple. It’s just up to other states to now follow suit. Such premium programs incentivize work, add people with disabilities who would have been spenders of tax dollars to the tax base, and relieve taxpayers of some of the Medicaid burden—without financially ruining working beneficiaries of these reforms.
Affordable personal care services are the key to unlock a whole new world for people who rely on them to live in the community—people who are currently resigned to living an unfairly limited life under the current system. We as a community need to rally around those who are most needful of these vital services, as it will lift up our entire profile as a community and reveal talent and ingenuity to the whole world previously hidden by ableist policies.
