By Kaitlin A. Kerr, self-advocate, United Way of Southwestern Pennsylvania’s #IWantToWork Campaign
Kaitlin is an artist and advocate. She holds degrees in English Literature, Nursing and Nursing leadership (MSN, RN) and currently works as a nurse educator for disability awareness. Kaitlin lives with Ehlers-Danlos Syndrome, Rheumatoid Arthritis, Crohn’s Disease and Interstitial Cystitis, adenomyosis, among other disabilities. On her better days, Kaitlin focuses on running a Shakespearean theatre company with her partner, Jonathan. She is also a published poet. Kaitlin serves on several committees and teams for organizations working toward more equitable healthcare and disability justice, such as Faith Above My Ability (as the Media & Outreach Specialist), United Way of Southwestern Pennsylvania’s #IWantToWork Campaign and the Pennsylvania Health Action Network (PHAN). She also volunteers for PAAR (Pittsburgh Action Against Rape) as a sexual assault counselor and is a trained intimacy choreographer/director for theatre. Much of her artistic work grows out of the reality of living with a rare chronic pain disorder and finding meaning in connection with others.
Even though I have had disabilities all my life, they didn’t affect me significantly until my early 30s. The transition from “healthy” to “sick” was incredibly difficult. It was like stepping into a parallel universe. I lost my career, house and my life savings. But the worst was yet to come.
When I got SSDI and the Medicare that comes with it, I initially thought that it would be my saving grace in terms of medical costs. However, I ended up spending more the first year I was on Medicare than when I had a health plan through my employer. In 2020, I spent $25,000 on medical expenses. Yes, $25,000 – out of pocket and after insurance.
While bleeding money, I realized two very painful things: first, that I needed Medicaid. Second, in order to qualify, I had to be fairly income and asset poor, which I was … except for my retirement savings, which is considered an asset by the Social Security Administration (SSA). I had to divest myself, putting all of my remaining savings into what is called a “special needs trust.” This trust is out of the stream of my income, cannot be used on food or shelter and is absorbed by the trust in the event of my death.
I applied for, and was granted, Medical Assistance for Workers with Disabilities (MAWD). In Pennsylvania, this program allows disabled workers to receive Medicaid, and people like me (who have Medicare and Medicaid) to receive prescription assistance. MAWD was my saving grace, and yet, it came with strict income and asset limits that dictated my life and the lives of so many.
There are two looming injustices within our county’s medical assistance programs: marriage inequality and forced poverty.
Throughout the pandemic I’ve witnessed the deep hurt of non-disabled people when they have had to downsize or reschedule their wedding ceremonies, all the while believing that I would never be able to marry the person I loved. I believed this because we discovered that when you get married, the government deems a portion of your spouse’s income as your own; and because of MAWD’s low income and asset-caps, my benefits would be all-too-easily lost with any small increase to my income. I needed MAWD to survive each month, so marriage was off the table.
Forced poverty is another significant barrier faced by many people with disabilities. Most programs require people with disabilities to make very little income to qualify and that puts a hard limit on how much we can save in any form. Can you imagine how frustrating it is to turn down a job or not be able to put money in your savings because you could lose the benefits that keep you alive?
Fighting for Change
Ultimately, I could not accept this as my future, at least not without a fight. I networked and reached out to others in similar situations. Even though I was afraid of the potential penalties, I started sharing my story. I wrote letters to the editor, contacted news stations, spoke on podcasts and called everyone I came across to action.
I joined the fight with United Way’s #IWantToWork Campaign and many of my peers with disabilities to help pass a piece of legislation that eventually became Act 69 in Pennsylvania. The legislation was written by the #IWantToWork campaign in 2018 and 2019 as a response to the passage of the Workforce Opportunities for High School Students Act (Act 26) and Employment First Pennsylvania (Act 36), two bills that were also supported by the campaign.
Knowing this had the potential to impact so many lives, a team was established through United Way of Southwestern Pennsylvania consisting of community leaders, self-advocates, lobbyists, policy writers and business allies to develop and rally support for this legislation. Act 69 also required tremendous assistance from state legislators and the Department of Human Services. PA Senator Bob Mensch and PA Representative Kate Klunk respectively introduced the legislation in 2019. Having family members with significant disabilities encouraged these legislators to work tirelessly to get the bill passed and signed.
Act 69, once implemented in 2022, will make important changes to the MAWD program and improve the lives of PA workers with disabilities. These historic changes will raise the income limit and eliminate asset caps for those on the program longer than one year, meaning MAWD recipients can have financial safety nets, take promotions at work and get married, if we choose!
Looking Toward the Future
While we are making strides in Pennsylvania, there are still many changes needed on a national level. I am hopeful lawmakers and community leaders will tackle the issues people with disabilities still face, they can only do so if they have comprehensive and correct information, backed by real-life stories.
We must continue to make our voices heard. We also need allies to help people with disabilities receive the most basic human rights we have been denied. If you want to join us, learn more at IWantToWorkPA.org.