By Taylor Ware
“We fight the same legislative battle year after year,” said Empower: Abilities CEO Shannon Porter. Empower: Abilities is a not-for-profit striving to remove barriers and empower independent living for all people with disabilities.
The needs of these individuals vary from person to person, but generally, they include assistance with household chores, cooking, shopping, correspondence and transportation. Assistance in this capacity is often performed by loved ones like friends and relatives. However, this dynamic is a complicated one. It crosses the wires between helping out a loved one and working a full time job. The financial implications are distressing as well. That is why Medicaid reimburses caretakers of this sort via institutional vendors like Empower: Abilities.
In more recent years, minimum wage and inflation have continued to rise while rates for these caretakers were stuck in the mud. It is getting increasingly difficult for individuals with disabilities to remain in their homes because of a lack of funding for their caregivers. To worsen things, Missouri Governor Mike Parson proposed cuts to their funding which would have resulted in a massive deficit for Empower: Abilities and many similar organizations. Amidst the COVID-19 pandemic, Shannon Porter knew she must make a plan to tell the stories that she is so passionate about before the annual budget was passed.
The pandemic prevented in-person interactions, so she determined that written accounts would be the safest option. Conveniently, Dr. Kathy Nordyke of the Citizenship and Service-Learning office at Missouri State University, serves as a member of the board at Empower: Abilities. That pre-existing relationship led to the birth of an inspiring service-learning project. Dr. Nordyke believes that service-learning is the answer to many community issues. She said, “The Springfield area is sitting on a wealth of resources here at Missouri State University. These students can move your programs forward and impact hundreds of thousands of lives in a positive way.”
Graduate Assistant Devon Paden along with service-learning students, Luis Medina-Gentlemark and Connie Bonebrake, grabbed hold of the reins for this project and didn’t let go. In the end, they wrote 17 personal accounts of people with disabilities. These individuals were all connected to Empower: Abilities and were open to sharing their stories— each just as moving as the last. Porter was thrilled by the work she received:
“This was a challenging task. To connect with a stranger over the phone, draw out information that is sensitive to discuss, and compile it into a logical, compelling one-page story is a big ask. When the stories started coming in, I was amazed. Every story was phenomenal. The work we got back was stunning, personal and touching. I sent them out to our staff, and they felt the same way. As a whole, we feel more aligned than ever with the importance of what we do here because of the stories that service-learning students helped to tell.“
After collecting the stories, Porter began sending them to legislators. They needed to know that the budget is not just full of numbers on a page. It is full of the lives of hundreds of thousands of people each with gripping stories to tell.
Prior to the passing of the rate increase, Porter lost a lot of sleep. She said it was the most stress she’s felt in her time as CEO. “The staff and I were on pins and needles waiting through this process. I was just hopeful that we’d achieve a flat rate.”
The Missouri Senate Budget Committee restored cuts and budgeted for a 5.29% increase in Medicaid reimbursement. The increase was deeply validating to everyone involved. For Porter, the relief comes in knowing that there are legislators who see and value this issue. However, the effort isn’t quite finished. The money is tied to the Medicaid expansion in Missouri which has yet to pass its final stages.
If it goes through, it will mean security of services and stability for providers. In the case that the increase isn’t received, providers may go out of business. Switching providers is not a quick process, and gaps in service are detrimental to those with disabilities. In some cases, it would become financially impossible for people with disabilities to remain living independently. Nursing homes are often not the solution they desire as they reduce freedom and are also financially draining. Porter continues to make their needs known:
“We have bombarded policymakers on social media and email because we have to communicate this. One particular senator visited our facility, and she told me that we need to keep doing whatever we’re doing because this is what everyone in Jefferson City is talking about. It makes me so proud to know that we are being heard.”
It is clear that service-learning students are doing great things and experiencing much as they demonstrate the connection from class to career and from college to community. They are making a difference and improving the lives of others. Despite the lack of closure on the policy at stake, the stories will still have an impact.
They can be used in communication with the public, donors, volunteers and in grant writing. Additionally, the participants observed that it was therapeutic for interviewees to be asked to speak candidly about their hardship. As a result of the pandemic, they have been especially isolated and a chance to connect with someone is always welcome in times like these. According to Paden, “Without service-learning students this wouldn’t have happened.”
For the service-learning students, conducting those interviews was enriching in many ways. On one hand, they were granted a special peek into the lives of some very unique and impressive people. On the other hand, this was a really positive and worthwhile project for the development of their career skills. It also aligned perfectly with their ongoing studies as they were taking a Social Welfare and Policy course at the time. Service-learning student Luis Medina-Gentlemark was very excited by the work he did:
“It was fulfilling to exercise the interviewing skills and advocacy knowledge I’ve been learning in classes. We spend time talking about the disabled community and the correct ways to frame sensitive topics like using person-first language. Many people would feel uncomfortable talking to them because it is so personal, but our classes help prepare us not to cross any lines and to understand their difficulties.“
The blend of coursework and community engagement that Medina-Gentlemark describes is exactly the type of experience the Citizenship and Service-Learning office dreams of creating for all Missouri State University students. It is transformational for the community and student as well as geared toward career skills. Medina-Gentlemark is interested in working on alternatives to policing such as sending social workers in response to certain 911 calls. The policy work and interpersonal communication experience from the Empower: Abilities project will collaborate nicely with his aspirations.
For Medina-Gentlemark the rate increase was invigorating. He explained that they had only focused on avoiding cuts, so the notion of an increase was truly exciting. It was especially rewarding to see an actual numerical value applied to the work that he and the team had done.
Empower: Abilities CEO Shannon Porter is already thinking of projects for the future. Porter’s ultimate goal for the rate increase is 18% as that is what is needed to return to the equivalent of their funding prior to more recent inflation. Empower: Abilities will continue to gather and share stories about people with disabilities and their needs. This is a civil rights movement that requires wide-spread efforts in order to enact change.
Porter intends on fostering the continuance of a relationship between Empower: Abilities and Service-Learning. Porter said, “I was incredibly impressed with the level of work provided. It was so high-quality that I could simply enjoy the stories. Those students were a blessing.”