I guess I always took for granted that the Americans with Disabilities Act (ADA) was passed into law before I was born. I grew up in a world that treated accessibility as the ostensible default and benefited from universal design in ways I could not appreciate as a child. I would ride my bike over curb cuts in sidewalks like I was performing an advanced trick or watch the closed captioning roll by on the nightly news (a fixture of the home I grew up in). I could thrive in my environment, not knowing that pieces of it represented the work of decades of advocacy. Even my mother, who worked at a facility for individuals with developmental and intellectual abilities, couldn’t properly convey all the nuances and rationales of the buildings I traveled through, the technology I used.
It is only in hindsight that I see the benefits of the ADA and other accessibility advocacy efforts that were in the world around me then and now. As I began my studies as a doctoral student of Audiology, I got my first window into the world of Advocacy and Policy in efforts to learn about my future patients, their families, and my future colleagues. Research led to conversation with lawmakers in Ohio and Washington D.C., including how to help people with different hearing abilities to maximize their access to community and technology to reach their goals. These conversations fostered a growing wonder in me for the complexity of the systems that govern our lives. They extend so far beyond Audiology that I wondered how I could even find a foothold into that wider lane. I needed to learn more of the rules in order to make a difference, so I worked to do just that.
In the past year, I became a trainee for Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the Kennedy Krieger Institute of Baltimore, M.D. I knew it was an opportunity that would help me become the best clinician I can be for pediatric patients and their families. However, another key motivator that brought me to where I am now was the knowledge that LEND would give me greater access to the Association of University Centers on Disabilities (AUCD) and the fantastic work they do to include and uplift individuals with disabilities. Part of that access came in the form of attending their Annual Conference in Washington, D.C., last November.
I had wanted a wider perspective into this world, and I can hardly think of a better opportunity than those four days in November. Not only did I get to meet with other LEND trainees from different disciplines, but I also got to connect with trainees from the University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) program. I got to see examples of professionals who have decided to make disability awareness and advocacy a pillar of how they work in the world. Most importantly, I got to hear about the lived experiences of individuals with disabilities: what works for them, what needs to be improved, and how to support the development of a society where ALL members are valued and allowed to share their gifts and thrive.
Here are a few takeaways that I got from the AUCD Conference that I felt were important to share:
- Support for individuals with disabilities can transcend politics and bring people together from all walks of life.
- Bringing people together in this way is what got the Autism CARES Act (HR. 1058, S. 427) signed into law, guaranteeing continued research and outreach to identify and provide the best services and resources for those who have autism as well as their families and the professionals who serve them.
- There is still work to be done! The Money Follows the Person (MFP) Rebalancing Demonstration Grant provides access to home and community-based living options for individuals in Medicaid’s long-term care system. This is an amazing program for individuals with disabilities, letting them have more choice in where they want to live. MFP has been adopted by 43 states and the District of Columbia, but support is needed to keep it going and allowing it to benefit even more people. The current funding provisions for MFP expire on December 11th, 2020.
- Anyone can help: Contacting lawmakers is always an available option (House) (Senate). A recent bipartisan proposal in the Senate about reduction of drug pricing includes language that would secure permanent funding for the MFP. Voicing support for this legislation is a great way to advocate. Additionally, the AUCD Website has a ton of additional resources to pursue public policy and advocacy, if you are like me and didn’t know where to begin.
I hope to keep spreading the word about disability advocacy as I continue into my future career. Now that I’ve found this space, I want to help others do the same. I’m so encouraged by the community and opportunities out there for people, no matter what their background is. Together, we can advance toward a culture and environment that keeps including, supporting, and encouraging every person to thrive.