Then: Watershed Moments That Changed Lives

A watershed moment is a big turning point.

It’s the point when “before” ends and “after” begins. Things are clearly different once it happens. Think of it like reaching the top of a hill: once you cross over, the water (and everything else) flows in a new direction.

When we look back across 50 years of disability advocacy in Tennessee, certain turning points stand out - moments when the persistent work of individuals and organizations created fundamental shifts in how Tennesseans with disabilities live, learn, work, and participate in their communities.

Creating a Beacon for Tennessee

When Wanda Willis joined the Tennessee Council on Developmental Disabilities in the 1980s, she found an agency that was seen as merely an “advisory committee.” The federal funds meant for Council operations were instead funding 12 state preschool programs, leaving little for the Council’s true mission.

“I attended a national meeting for councils and learned what we were supposed to be,” Wanda recalls. “This allowed the Tennessee Council to begin carrying out mandates in the Developmental Disabilities Act.” Wanda transformed the organization from an overlooked committee into what Lauren Pearcy, current Executive Director, describes as “a beacon that leads the rest of the field.”

“The Council itself might be the most important milestone,” reflects Wanda, who led the Council for more than 30 years. “It created a work center for a diverse group of Tennesseans with disabilities and their families, state policymakers, and community advocates to come together. They could identify problems and develop strategies for change.”

This change didn't happen overnight. It required building diverse membership, creating strategic plans, setting up grant programs, and slowly building staff. Another big milestone came with an executive order that made the Council a free-standing agency in Tennessee, rather than operating under the state agency for intellectual disabilities.

Fifty years after its creation, the Tennessee Council on Developmental Disabilities continues to bring people living the disability experience together with policymakers to solve problems and point the way forward.

"The Council can be thought of as small scale, with a very small staff. But the role we play is monumental." — Lauren Pearcy, Executive Director

The Civil Rights Revolution: ADA and Beyond

For Carol Westlake, founding Executive Director of the Tennessee Disability Coalition, nothing compares to the passage of the Americans with Disabilities Act in 1990.

"This fundamental public acknowledgment of the civil rights of people with disabilities was a watershed moment," Westlake reflects. "Joining with people all over the country to advocate for the ADA was powerful. Celebrating its success was even better."

The ADA's impact was both immediate and longlasting. "In the moment, the ADA gave people with disabilities and their families hope. It made us feel seen, and it made us feel heard," says Westlake. "It reminded all of us that the place for people with disabilities is where we've always been… everywhere."

While the ADA provided the legal framework for inclusion, Tennessee advocates were already building the grassroots infrastructure that would transform policy into lived reality. In 1989, with Council support, People First of Tennessee emerged as a statewide self-advocacy organization led by individuals with developmental disabilities. That same year, the Council helped form the Tennessee Disability Coalition to unite diverse disability organizations under a common advocacy umbrella.

"The passage of the ADA – 35 years ago! - opened new day-to-day opportunities. Discrimination did not disappear, but it diminished. And now there were tools to address it." — Carol Westlake, Founding Executive Director, TN Disability Coalition

From Institutions to Community

One of the biggest changes in the past 50 years has been moving from housing people with disabilities in large institutions to community living. This shift took time.

Lynette Porter, Deputy Director of the Council, witnessed this change firsthand. For her, seeing the closure of Tennessee’s developmental centers stands out as the most important milestone in her career.

“When I started with the Council in 2000, all three of the state’s developmental centers were still operational. The shift wasn’t like flipping a switch…it was more like a series of slow-falling dominoes.”

Those dominoes began to fall in 1995, when People First of Tennessee joined with the U.S. Department of Justice to file a landmark lawsuit over conditions in state institutions. This legal challenge set in motion a 20-year process that culminated in 2017, when Greene Valley Developmental Center closed its doors. With that final closure, Tennessee became the 14th state in the nation with no large, state-run institutions for people with intellectual disabilities.

Carol Westlake, founding Executive Director of the Tennessee Disability Coalition, also points to another critical milestone in this journey: the Family Support program.

“Legislation establishing the Family Support program was drafted by the Coalition’s task force, introduced and lobbied for by Coalition members, and eventually passed by state lawmakers,” Carol explains. “The program became the very first home and community-based service in Tennessee state law. It was also the first program available across age, disability type, and familial status.”

Lynette Porter reminds us there’s still work to do: “While individuals with intellectual disabilities live and sometimes work in the community today, we have to ask if they have community. We have to explore what barriers exist that can prevent a person from truly belonging.”

Breaking Ground in Healthcare Access

For many families, accessing healthcare for complex needs has been one of the most significant barriers to full inclusion. In 2018 and 2019, Tennessee took a major step forward with the passage of the Katie Beckett Program for children with disabilities.

“For those who had access to no services, families who previously had the choice to divorce or file bankruptcy in order for their kids to access lifesaving care…this program is a game changer,” says Sarah Sampson, current Executive Director of the Tennessee Disability Coalition.

Sandi Klink, former Executive Director of the Memphis Center for Independent Living, points to another healthcare milestone: the CHOICES waiver program that followed “the longest sit-in in history.” As Sandi recounts, “Memphis advocates, including some of our agency staff, took every opportunity to stand up to then-Governor Bredesen, ultimately resulting in a 72-day sit-in in the Governor’s office.”

The result? “Many Tennessee citizens could at last receive services out of a nursing home…freedom to choose where, when, and who delivered those services,” Sandi explains.

Employment and Education: Opening New Doors

As institutions closed, another major shift was taking place in how Tennessee approached employment for people with disabilities.

Lynette Porter highlights the closing of sheltered workshops as another crucial step forward. “I would put the closing of the sheltered workshops as a close second [to the closing of institutions],” Lynette says. “In my work prior to coming to the Council, I can remember going into workshops for tours and thinking, ‘This can’t be a viable path to meaningful employment.’”

Dr. Alicia Cone, Director of Program Operations at the Council, describes how the state began building momentum toward real employment opportunities.

“One of the earliest projects I led was increasing the number of people served by DDA (Department of Disability and Aging) who were in community-based employment,” Alicia recalls. “That work began in 2000... After gathering data on DDA’s employment numbers and rate for people with developmental disabilities, we offered a challenge grant to increase the percentage from an estimated 8% to 25% over several years.”

“These efforts laid the groundwork for Tennessee becoming an Employment First state over a decade later.” — Dr. Alicia Cone

In 2013, Governor Bill Haslam signed an executive order designating Tennessee as an “Employment First” state. This formalized the state’s commitment to competitive, integrated employment as the first option for people with disabilities. It meant more people with disabilities getting support to do real work for real pay.

Educational opportunities have expanded dramatically, as well.

Pablo Juárez, Co-director of the Vanderbilt Kennedy Center’s UCEDD (University Center on Developmental Disabilities) and TRIAD Autism Institute says: “I’m proud of working with the Tennessee Department of Education to create a process by which we can often, in real time, connect with schools who require support in reducing restraints and seclusion for students with intellectual and developmental disabilities.”

This work focuses on supporting “students who are some of the most restrained and secluded students in the state,” with the goal of helping them “access more positive and even enjoyable learning contexts, ideally with more access to their peers.”

In 2010, with startup support from the Council, Vanderbilt University launched Next Steps, Tennessee’s first inclusive higher education program for students with intellectual disabilities. This pioneering effort has since expanded to nine inclusive college programs across the state.

As Wanda Willis, the Council’s former Executive Director, remembers: “One morning, I was walking across the Vanderbilt campus when the bell rang to change classes. Suddenly, I was surrounded by students rushing to their next class. Someone walking by me called out ‘Hey,’ and kept walking. I looked up to see the smiling face of Matthew Moore, in jeans, black t-shirt, and black backpack, dressed like every other student on campus... At that moment, he showed me where we needed to be headed and that what might seem impossible was achievable.”

Building a Movement Together

What made these transformations possible? According to Wanda Willis, it was “the genius of the Developmental Disabilities Act (written by parents and individuals with disabilities) and the incredible leadership of Tennesseans with intellectual and developmental disabilities and their families.”

This collaborative approach became Tennessee’s hallmark. The state developed partnerships across systems that many other states couldn’t match.

Pablo echoes this collaborative philosophy. “Everything comes down to relationships. When we have strong and healthy relationships at every level, we can make big and positive things happen. Importantly, it takes intentionality, compromise, and a lot of time.”

“There’s not a single sustaining accomplishment I can think of that didn’t require or doesn’t require strong relationships at every level.” — Pablo Juárez

Pablo points to Tennessee’s Developmental Disabilities Network as proof: “I’m very proud of being a part of one of the strongest developmental disability networks in the country. The way the state’s DD Network works together to address big issues and big needs is really impressive, and it’s actually rare within our country to have a state DD network work as well together as we do.”

Carol Westlake offers advice that has guided advocates through these decades of change: “Work together. Listen to each other. Take care of each other. And never give up. Do not let the perfect be the enemy of the good. This is a marathon.”