From Determined Parent to Community Organizer: Improving Care for People with Disabilities

Photo Credit: Ashley Hylbert

Leisa Hammett, a parent of a young adult with a disability, recently shared her inspiring story with us. We had the opportunity to learn about Leisa’s journey from parent and caregiver, to an influential, effective advocate for families across Tennessee. From advocating on behalf of her daughter, Grace, to eventually serving as a grassroots organizer for the Tennessee Disability Coalition, Leisa reminds us that those with lived experiences and personal stories have enormous power to create change. 

At the age of three, Grace was diagnosed with moderately severe autism. As Leisa expected, the journey for a child with a disability proved not to be easy. Once Grace started school, she faced many challenges in receiving the services she needed. For example, when Grace was in kindergarten, her school system bused children with disabilities across town to segregated classrooms. Leisa asked herself: what could she do to help Grace, and make the path easier for others? Leisa decided to be bold, and wrote a proposal to the school system advocating for a classroom structure that would better serve Grace and her peers. School administrators agreed with her proposal and implemented changes that allowed students with disabilities to stay in their home region of schools. This was the moment Leisa realized that by using her voice, she had power – the power to convince policymakers to make changes that would make a concrete difference for other families like her own. 

Because of Leisa’s ongoing support and activism, Grace thrived as a young child. It was clear Grace had an affinity for color and composition, and by the age of eight she was selling her art work. At age 13, she appeared as a special guest on “The View” where she gained national attention. But even as Grace’s art was blossoming, more challenges were emerging over the horizon – as she approached adulthood, Grace would age out of the school system and would lose access to all the supportive services she had been receiving in the educational setting that had enabled her to grow and thrive. 

In 2014, however, the ECF CHOICES Program, a new long-term services and supports program for individuals with intellectual and developmental disabilities was enacted in Tennessee, providing a ray of hope. Grace was eventually able to enroll in the program, but the process came with many hiccups and roadblocks and required Leisa to spend long hours troubleshooting the system. She expected that other parents were experiencing similar problems and frustrations, so she decided to roll up her sleeves and do something about it.

Leisa started a statewide Facebook group to connect consumers and families in the ECF CHOICES program in order to collectively tackle ongoing issues with the program. Leisa, along with a few members of the Facebook group, went to the Tennessee Disability Coalition (TDC), an advocacy and policy focused organization, sharing their first-person concerns. TDC was able to give greater voice to their experiences, offer guidance around advocacy strategy, and connect parents with key decision-makers within state government. In other words, TDC was able to further empower this group of parents to translate their personal experiences and their voices into engaged actionable advocacy.

[Watch our new video about the Tennessee Disability Coalition's Organizing Work]

With TDC’s help, Leisa organized a group of parents to meet directly with TennCare –Tennessee’s Medicaid program, which administers ECF CHOICES – with 25 letters in hand from parents. The group outlined the problems parents faced and offered solutions the state could implement to make ECF CHOICES work better for families. Their efforts sent an important signal in the early stages of the new program: that parents and consumers would be persistent, outspoken and hold decision-makers accountable in getting issues addressed and resolved. 

Leisa’s independent work in organizing families led to her hiring in 2018 as a professional grassroots organizer for TDC. In this capacity, she not only lends advice and resources to help struggling parents and families, but she brings families and individuals together to create community, identify and cultivate community leaders, and build increasing power among parents and caregivers. She is currently helping identify and train consumers, parents, caregivers and others to be effective members of the managed care advisory boards that oversee the ECF CHOICES program so consumers’ voices are heard at the tables of program management and improvements can be made. Leisa’s and the other organizers’ efforts, along with TDC staff and key partners, helped parents and caregivers influence and improve issues around network adequacy, access and benefit packages in the ECF CHOICES program.

Leisa has come a long way since the day of her daughter’s diagnosis. Through her persistent advocacy and organizing efforts, Leisa transformed from a person unsure of how her family’s needs could be met to a person with immense power – power to shape policy, influence decision-makers and amplify the voices of other families and consumers in need. 

Author: Julia Coddington. Intern, Community Catalyst, with thanks to Leisa Hammett for her significant contributions to this post.