PublicSource – For most people, waking up and getting ready for work is a fairly straightforward routine. You get up, probably drink some coffee, take a shower, get dressed and head out the door. I’d guess it takes you about an hour, maybe two hours at the most?
For me, my morning routine is anything but straightforward. I have spinal muscular atrophy, a neuromuscular disease, and it means that I need help with each and every one of these steps. I rely on personal care attendants [PCAs] to assist me with all of these routine tasks.
Getting out of bed and adjusted in my wheelchair can take 10 or 15 minutes alone. Even a “quick” shower is 30 minutes, minimum. I constantly plan on things taking longer than I think they will and have to schedule out every step of my morning. I typically wake up a little before 5:30 a.m. to leave the house by 9 a.m.
While my routine may be more involved than most, the outcome is still the same — after I’m done getting ready, I go to work. I’m a research coordinator at the University of Pittsburgh, in the Graduate School of Public Health. I have insurance through work, but I’m aware of no insurance that covers “long-term support services” offered by nurses or PCAs. So I am enrolled in a state-based Home and Community-Based Services [HCBS] waiver to cover these costs.
Normally, these HCBS waivers have incredibly low income and asset levels, meaning if you earn — or even having a savings account — above these levels, you can become ineligible for the program and the state will no longer pay for your care.
My salary actually makes me ineligible for an HCBS waiver, but under something called Medical Assistance for Workers with Disabilities [MAWD], I can keep my job and maintain my eligibility for services by paying slightly under $100 into Medical Assistance each month. That’s just like you’d pay a monthly premium for any other insurance. But if my pay increased past the eligibility cap of $62,000, I’d lose my access to the waiver.
In other words, if I were to earn a modest raise, I’d have to pay for crucial services out of pocket, which I absolutely can’t afford.
I realize that $62,000 is not a small number. But let’s take a moment to do some back-of-the-envelope math. The number of PCA hours I get a month depends on my living situation. I currently live at home and do get some assistance from family because it can be very difficult to find PCAs to consistently work the hours that I need each week. PCAs generally make between $10 and $12 an hour, and finding people willing to work for these wages long term, can be challenging.
However, my goal is to move out and live independently, where I’d rely on PCAs for all of my needs. In this case, I would need a PCA for 115 hours a week, which comes to about 460 hours a month, or 5,980 hours a year. Based on the PCA wages that I mentioned, this means that I’d spend between $4,600 and $5,520 each month on care, or $59,800 and $71,760 a year, completely out of pocket.
The services are not a luxury — they’re necessary for me to get out of bed and out the door. When you look at these numbers, it’s easy to see that a salary limit of $62,000 is not that high at all. If I had to pay out of pocket for PCA services, I may have to spend my entire salary on these costs, leaving nothing for food, rent, clothing and the rest of my life.
This salary cap forces me to decide between my job and my health — a decision that really isn’t a choice at all. If I want to apply to a job, I have to look not only at the lower limit of a salary range, but the upper one, too. If I lost my services, I’d end up losing my job, too, as I can’t get to work without those services. I’d be right back where I started.
The United Way’s #IWantToWork campaign — a social media project centered on ensuring people with disabilities have access to employment opportunities and fair wages — is tackling the issue of this salary cap by pushing for lawmakers to eliminate it. They’ve worked with state representatives to have bills introduced in the House and Senate and continue to raise awareness of the importance of this issue with an online petition.