Two current LEND Trainees, Rebekah Funk (Occupational Therapy) and Monica Still (Self Advocate), had the opportunity to attend the inauguration of Pennsylvania's new governor, Josh Shapiro on January 17th in Harrisburg. They shared some of their thoughts about the event and what they hope will come from Shapiro's time in office.
Q: How did you receive an invitation? What is your connection to Josh Shapiro?
MONICA: I worked with Dr. Josie Badger in TRAIL. TRAIL is a group of disabled people who are learning and performing advocacy together. Before the primaries TRAIL set up virtual town halls with all the candidates. It was a forum for the disability community to ask questions of the candidates about issues important to the community. We met the AG then. He contacted TRAIL a couple of times throughout his campaign. He even made sure he contacted us to encourage us to vote. He saw the disability community as a constituency. Dr. Josie Badger was contacted by the AG to be a part of the transition team. He also invited TRAIL members and Dr. Badger to attend the inauguration. I was honored and thrilled to be included.
REBEKAH: Growing up in Pittsburgh, I was a member of the Pittsburgh Youth Chorus (PYC), which was one of the groups that performed for Josh Shapiro’s inauguration. I was invited as an alum to join PYC in Harrisburg. Additionally, Arvind Venkat, the Pennsylvania state representative for my district, so generously invited our group into the House chambers prior to the ceremony to meet other Allegheny county representatives.
Q: What is something you would like to see him achieve as governor?
MONICA: I would like to see the Governor appoint someone to fill the vacancy of the Disability Advisor to his cabinet. This position has been vacant since 2019. There is an Advisory Committee for People with Disabilities that has not met for as long. I would like to see an executive order giving power to this position and committee. Currently, much like the ADA, it has no teeth. It should also oversee the ADA coordinators in each county. in very few counties, like Allegheny, is the position separate. The ADA coordinator should be doing what needs to be done for the community, not simply preventing counties from being sued. Finally, I would like to see this committee and position codified by the legislature. At present, any Governor can eliminate this position and committee.
REBEKAH: I would like to see a greater emphasis by the PA government in supporting individuals with disabilities and their families as they navigate the transition from the school system to adulthood. There is no centralized service or support to assist families, and many do not even know where to begin or who to turn to in this process. While the “transition plan” should be included in a student's Individualized Education Plan beginning at age 14, not all school districts offer the same level of guidance in its creation. Waivers exist to provide financial support, but the process to acquire one is challenging with extensive waiting lists. We need to prioritize these individuals in Pennsylvania as they transition to adulthood by not only funding the waiver system but by creating spaces for young adults with disabilities to continue to learn, grow, and thrive outside of the school system. We need to establish and promote programs that encourage individuals with disabilities to seek meaningful employment or volunteer opportunities, develop life skills to increase independence, and recognize these members of our communities as valuable. My hope is that Governor Shapiro will commit to investing in these programs to support the transition period for individuals with disabilities in Pennsylvania.
Q: What would you share with Josh Shapiro as being important as he starts his new role as governor?
MONICA: The system that governs HCBS is broken. People are waiting in hospitals and skilled nursing facilities to be able to live in the community. The Olmsted decision of the SCOTUS guarantees a person's right to choose where they live regardless of their need for care. We are failing the disability community in this area. Caregivers need to have higher wages, benefits, and job security. In order to achieve that, agencies need to be paid more for caregiving services. Moreover, whenever possible the disabled person themselves should manage the allotment given to them by the waiver programs. Care should be self-directed. Not to mention that the waiver program itself is confusing and convoluted. It differs from county to county. The waitlist is disgraceful. We need to fund these programs in order to meet the promise of Olmsted and have real inclusion.
REBEKAH: I would encourage Josh Shapiro to continue to listen to all life perspectives throughout his tenure as governor. While so many programs may appear to address the identified needs, in practice, there may be more challenges than one could ever anticipate on paper. As an occupational therapy student and a sister of someone with an Autism diagnosis, the disparity between what systems and supports were designed to be (what I am taught as a student) and what they actually are for families (what I know from navigating the system with my brother) is wide. Hearing from individuals that are living and breathing in these spaces and communities is the only way to truly identify the gaps and brainstorm realistic, achievable solutions.
Q: Do you have a memorable moment from the inauguration?
MONICA: My most memorable moment -- aside from hearing the legislators being instructed as if they were in kindergarten about how to leave the building and come outside -- was when Gov. Shapiro was introduced by his 4 children. It was so heartwarming to see a family with young children in the Governor's mansion. His speech was Obamaesque. It was hopeful. In fact, that was the vibe of the audience during the entire day.
REBEKAH: I loved being able to see the “behind the scenes” elements of the inauguration, as I was with the performers. Also, many of us clapped as former Governor Tom Wolf passed by the performer section, to which he turned around, shrugged his shoulders, as if to say “why are you clapping for me?” and laughed! There was so much humility displayed by all. Overall, the most memorable experience was to be surrounded with such hope at the state capitol, to be part of a peaceful transition of power, and to hear the uplifting address by Governor Shapiro. I am excited and optimistic to see what Pennsylvania can achieve in the next few years.