By Heather Tomko, Outreach Coordinator, University of Pittsburgh
In many ways, my life is like that of any other 30-something-year-old. I went to college, got a job and even went on to get my master’s degree. I spend my free time with my friends, my family and my dog; I love to see concerts and shows or lose myself in a book with a macchiato in hand.
But my life is also very different from many other 30-somethings in a big, important way. I have a disability – a genetic, neuromuscular disease called Spinal Muscular Atrophy (SMA). I’ve never been able to walk, and I got my first power wheelchair when I was two-years-old. I need help with lots of the day-to-day things that people tend to take for granted. I rely on caregivers – both paid and unpaid – to get in and out of bed, use the bathroom, get dressed…the list goes on and on.
This means that I’ve been reliant on a Medicaid waiver program called Medical Assistance for Workers with Disabilities (MAWD) to help pay for my caregivers for years now. You pay into the program each month, just like you do for private insurance, on a sliding scale based on your income. Receiving care is truly life-changing for me – without access to caregivers, I’d be quite literally stuck, in my bed or in my wheelchair, with no way to live my life every day. But paying for care is extremely expensive, isn’t really covered by private insurance and would quickly bankrupt me if I had to pay out-of-pocket.
Until recently, though, MAWD came with a tradeoff – if I made more than $60,000 a year, I’d be considered too high of an earner, and would no longer be eligible for the program. I know that $60,000 might sound like a lot of money, but if I were forced to pay for my caregivers out of pocket, I’d quickly exhaust my monthly salary…and then be forced to quit my job, because I wouldn’t be able to do my job without caregivers helping me get out of bed. This salary cap meant that every time I looked for a new job, I had to check out not only the minimum salary but also the maximum – and know that I might need to worry about negotiating down, even though I have both a bachelor’s and a master’s degree.
This is why I’m so excited about all the hard work that’s been done to change this and ensure that disabled Pennsylvanians can live full lives and be employed in jobs that are fulfilling and fitting for their levels of education and experience. The newly-enacted MAWD: Workers with Job Success does just that. It raises the salary cap, allowing disabled people with jobs making more than $60,000 per year to continue to remain eligible for MAWD by increasing their monthly salary premium payment.
Disabled Pennsylvanians like me will no longer have to make the impossible choice between access to caregivers and being employed. I look forward to seeing more and more disabled people in roles with power and authority, no longer relegated to entry-level positions, so that moving forward, policies and programs can be inclusive and equitable for disabled people.
And of course, I’m grateful to United Way of Southwestern Pennsylvania, the PA legislature and all of my fellow self-advocates who have worked long and hard to make this happen.