Next: Building on 50 Years of Progress
As we celebrate 50 years of progress for people with disabilities in Tennessee, our leaders share their hopes for the future and steps we can take today to create lasting change. This final section shows how we’ll keep moving from awareness to belonging, from access to true inclusion, and from rules to real action in the years ahead.
The Power of Changing How People Think
Sometimes the biggest changes don’t come from new laws or programs.
Tennessee Council on Developmental Disabilities Executive Director Lauren Pearcy has pointed out that sometimes, change requires us to help people think differently.
This new way of thinking was key to creating the Tennessee Center for Decision-Making Support. For too long, many people with disabilities weren’t allowed to make their own choices. Others would decide where they lived, how they spent their money, and even who they could spend time with.
The Center offers information to help people with disabilities make as many decisions as possible about their own lives, even as they get needed support. It began as a joint project of the Council, Disability Rights Tennessee, and The Arc Tennessee.'
Lisa Primm, former Executive Director of Disability Rights Tennessee, explains the Center’s impact:
“Having that information out there has prevented individuals from coming under a conservatorship when a conservatorship is not necessary.” The Center helps people know that they have a whole range of options to get needed support. When people have the right supports, they can make their own decisions without someone else taking control of their lives.
According to Tennessee law: “Conservatorship is a proceeding in which a court removes the decision-making powers and duties, in whole or in part, in a least restrictive manner, from a person with a disability who lacks capacity to make decisions in one or more important areas and places responsibility for one or more of those decisions in a conservator or co-conservators.” Tennessee Code Annotated 34-1-101(4)(A)
In plain language: Conservatorship is when the court decides that a person with a disability is not able to make their own decisions. The court gives legal decision-making power for that person to another person, who is called a “conservator.”
The Center for Decision-Making Support helps people with disabilities, families, and professionals find resources about decisions and future planning. “We really centered the voices and needs of the people we were serving at the center of that entire project,” Primm says. This shows how powerful it can be when we build solutions with — not for — people with disabilities.
Anna Bass, current Executive Director of Disability Rights Tennessee, reminds us this work never ends: “The progression of rights and advocacy and the progression of movement into a community of integration never ends. As humans, we are constantly evolving and we are constantly changing. We can never become too comfortable, too complacent.”
Building Systems Based on Lived Experience
For too long, people with disabilities weren’t included when decisions were made about their lives. Over the past 50 years, Tennessee’s disability community has fought to change this.
Anna Bass explains why this matters: “I don’t think any of us can do this work without listening to the community... It doesn’t really make sense to build a system if the people who are going to engage in the system don’t help build it.”
Edward Mitchell, Executive Director of the Statewide Independent Living Council, puts it simply: “Nothing about us without us. But we need to make sure we bring that lived experience along with the book, the educational experience to make sure they blend together well.”
This idea has guided many successful efforts in Tennessee. Sarah Sampson, Executive Director of the Tennessee Disability Coalition, points to the Katie Beckett Program as an example. This Medicaid waiver helps children with disabilities get care regardless of their parents’ income.
Sarah Sampson, current Executive Director of the Tennessee Disability Coalition, remembers how the program came about. “In 2018 and 2019, all the pieces came together... I had the privilege of working in a small way on this effort with many of the folks involved; getting to know families and elevate their advocacy, testifying at the TN General Assembly to educate lawmakers about the need for this program and how it might work, communicating with other members of the disability community and broader public about why this was needed and how they could move it forward.” The program happened because families shared their stories and helped shape the solution. They spoke at the legislature, taught lawmakers, and showed how the program would make a real difference. When systems are built with input from people with disabilities, they work better for everyone. As Lauren Pearcy describes, the Council’s strength comes from “connecting real people to decision makers and letting [people with disabilities] lead.”
Building Systems Based on Lived Experience
For too long, people with disabilities weren’t included when decisions were made about their lives. Over the past 50 years, Tennessee’s disability community has fought to change this.
Anna Bass explains why this matters: “I don’t think any of us can do this work without listening to the community... It doesn’t really make sense to build a system if the people who are going to engage in the system don’t help build it.”
Edward Mitchell, Executive Director of the Statewide Independent Living Council, puts it simply: “Nothing about us without us. But we need to make sure we bring that lived experience along with the book, the educational experience to make sure they blend together well.”
This idea has guided many successful efforts in Tennessee. Sarah Sampson, Executive Director of the Tennessee Disability Coalition, points to the Katie Beckett Program as an example. This Medicaid waiver helps children with disabilities get care regardless of their parents’ income.
Sarah Sampson, current Executive Director of the Tennessee Disability Coalition, remembers how the program came about. “In 2018 and 2019, all the pieces came together... I had the privilege of working in a small way on this effort with many of the folks involved; getting to know families and elevate their advocacy, testifying at the TN General Assembly to educate lawmakers about the need for this program and how it might work, communicating with other members of the disability community and broader public about why this was needed and how they could move it forward.”
The program happened because families shared their stories and helped shape the solution. They spoke at the legislature, taught lawmakers, and showed how the program would make a real difference.
When systems are built with input from people with disabilities, they work better for everyone. As Lauren Pearcy describes, the Council’s strength comes from “connecting real people to decision makers and letting [people with disabilities] lead.”
Looking Forward: The Next 50 Years
What will disability services and inclusion look like in Tennessee 50 years from now? Our leaders shared their hopes and the steps we can take today to get there.
Lauren Pearcy dreams of a future where disability is not an afterthought: “If things went exactly the way I hoped, disability would not be an add-in to the policy making process. It would just be fully embedded.”
This means people with disabilities would be at every decision-making table from the start — not brought in later to fix problems.
Sandi Klink, former Executive Director of the Memphis Center for Independent Living, hopes for a future where supports are available to all who need them: “All people with disabilities would have equal rights and access to whatever healthcare or daily supports needed. We would not have to fear a new diagnosis or exacerbation of disability, the need for more services, not qualifying due to making a few dollars too much.”
Edward Mitchell sees a future with more representation in government: “I want to see more individuals, no matter physical or invisible disabilities, sitting on city councils. I want to see them in mayoral positions. I want to see them on the Tennessee State Legislation because, again, there’s nothing about us without us.”
Kevin Wright, Assistant Commissioner for Vocational Rehabilitation, hopes disability services won’t even need to be mentioned: “That futuristic world would focus on supporting everyone in a way that allows them to do what they want, where they want, and how they want without labels or reservations.”
Steps Toward Big Changes
To move toward these dreams, disability leaders are focusing on actions we can take today.
Pablo Juárez is focused on reducing restraint and seclusion: “We have a lot of work to do in that area, a lot more, but we’re making good progress.” His team works with schools to better support students with challenging behaviors, creating “happier, safer, and more engaged students, classmates, teachers, and families.”
This relates to what Lauren Pearcy sees from the Council’s state systems lens – a need for improved behavioral health supports: “I really think we have to get a handle on supporting people with all types of labels when they have ‘behaviors’ as part of their support needs. That seems to be where everything breaks down—classrooms, group homes, any sort of adult services.”
Bruce Keisling notes that we need better ways to turn research into practice: “Simply knowing ‘what works’ is not enough; we must invest in understanding how to make it work across diverse communities and settings.”
Anna Bass stresses the importance of working together: “The first thing that I am looking to build externally is the connection between DRT and all of the other disability organizations in the state of Tennessee. To build a stronger connective network. Because I believe when organizations are in the same boat rowing together, we can get a lot further.”
Sarah Sampson, current Executive Director of the Tennessee Disability Coalition, has been thinking about the process of change. “Making policy change in writing, getting that law passed - is a big deal, but it does not mean that all problems are solved. How that law is interpreted, how the policy is practiced, and how it translates into access or services for real people (or doesn’t) is a whole complicated ball game that comes after. Advocacy never ends.”
As we look to the future, Wanda Willis reminds us to stay hopeful and practical: “Look for solutions. I can complain as vigorously as the next person, but after 5 minutes, I want to understand why we are doing things the way we are and what are the barriers to change. Then start the conversation.”
The Work Continues
The past 50 years have shown that progress is possible when we work together, center the voices of people with disabilities, and stay committed to the long journey ahead.
Elise McMillan, former co-director of the Vanderbilt Kennedy Center, shared a favorite quote as advice to a new generation of disability leaders:
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead
We’ve come far in 50 years, but there’s still work to do. With the wisdom of those who came before us and the energy of new advocates joining the movement, the next 50 years promise greater progress toward a Tennessee where all people with disabilities truly belong.
