Almost a year ago (wow – I can’t believe how time flies!) I shared a post about Lifting the Limit. You can read that post here.
As a quick refresher/recap of what that means – my personal care attendants (PCAs) who help me get out of bed, use the bathroom, take a shower, get dressed, etc., are paid through a state program called Medical Assistance for Workers with Disabilities (MAWD). People with disabilities who have a job pay into MAWD each month to receive these services – it’s basically like paying an insurance premium each month. The amount you pay is dependent on your income; it works like a sliding scale.
However – and this is a big caveat – that sliding scale currently tops out at $62,500. Once you make over $62,500, you’re no longer eligible for MAWD, and you’re responsible for paying for all of your PCAs out of pocket. For someone like me, who needs hours of care each day, it would be impossible to pay for my care plus my daily needs on a salary of $63,000 (or even $70,000 or $80,000). So people with disabilities are forced to remain unemployed or underemployed to keep their care.
This sounds abstract, but it has had very real implications in my life. When I was searching for jobs earlier this year, I had to look at the salary range listed… not to make sure they were high enough to fit my experience level, but to make sure they weren’t too high. And recently, my sister had to negotiate down a raise that came along with a promotion, because it would’ve put her over the limit. I’m pretty sure that these are concerns that most people without disabilities never, ever have to think about.
That’s why I’ve been working with the United Way to ask Pennsylvania legislators to “lift the limit” on how much I’m allowed to earn and still keep my PCA services. Things were going well with our advocacy efforts… and then COVID hit. Obviously, there were pressing public health issues for legislators to deal with in March. Now, while COVID is still very much a part of our lives, legislators are also getting back to some other regularly scheduled programming. News versions of the bill have been making their way around the state House and Senate.
But here’s where you all come in- we could use your help! We need to make sure that things keep moving forward. For that to happen, we need Representative Rapp to bring the bill forward for a vote. The more people who tell her that this is an important issue to them, the more likely she is to move it forward! So if you have a moment, I’d love for you to e-mail Representative Rapp (firstname.lastname@example.org) to make this happen.
You can say whatever you’d like in the e-mail, but if you’d like a script of sorts, you can use this:
Dear Representative Rapp,
I’m writing to ask you to move SB 890 forward for a vote. I think people with disabilities deserve the right to work in fulfilling jobs just like everyone else, and this bill would help them do that. I know that the people with disabilities in my life would greatly benefit from this bill being passed.
Thank you all so much in advance for your help. It means so much to me that you are all so supportive for my passion for disability justice!
This Post Has One Comment
Hi Heather. If you lose eligibility for MAWD, wouldn't you qualify under the Act 150 waiver? That's how my PCAs have been paid for 17 years. The monthly fee is also based on your income.