I’ve written before about having caregivers/aides who help me, and I’ve written about what it’s like when they don’t show up (in this post). But what I haven’t talked about is how they’re paid for.

image via liftthelimit.org

Paying for caregivers out-of-pocket would be incredibly (impossibly) expensive, and insurance doesn’t pay for long-term care (which is what caregivers are considered) at all. So there are state waiver programs, part of Medicaid, that pay for this care. Depending on how much you make, you may have to pay a monthly premium, on a sliding scale, to continue to be eligible even after you make more than the standard Medicaid limits (which are also impossibly low).

This all sounds reasonable… but there’s a catch. There’s an income cap of around $62,000 – meaning that if you make over that, you’re cut off. And if you’re married, it’s a combined $62,000, not just the income of the person with the disability alone.

This means that employed people with disabilities are forced to make impossible choices between remaining employed and remaining eligible for the services that keep them employed. It’s a nonsensical system, because forcing people to choose unemployment means that those people cost the state more money than they would if the state continued to support them through their employment.

I am working with the United Way to get Pennsylvanian lawmakers to “lift the limit” on the salary cap. You can visit liftthelimit.org to watch two videos of people sharing their stories (you may recognize a familiar face…) and then sign the petition to show your representatives that you support lifting the limit, too.