May 2022

View full original email with photos here.

From the Executive Director's Desk

Dear readers,

Since our last newsletter, we held our first in-person Council meeting in over two years.

It was a truly joyous occasion. On top of celebrating our reunion, we got to celebrate several major accomplishments. The same day as our meeting, Council member Brigham Scallion helped accept a $300,000+ grant award from the TN Department of Intellectual and Developmental Disabilities (DIDD) to Dyersburg State. The grant will fund the state’s first inclusive higher education program at a community college. Also the same day as our meeting, we got word that the General Assembly would invest $1 million in adult- size changing tables, one of the Council’s top priorities. (More in article below – read on!) All of us jumped to our feet to applaud and cheer this news. It was a perfect moment to be together in person.

Finally, we celebrated the service of Council members Jennifer Coleman (Northwest Development District) and Lesley Guilaran (Southwest Development District) as their terms come to an end this summer. Both of these women have had a profound impact on me, personally, during their time on the Council. The stories they were willing to share about their daily lives have had a direct impact on the Council’s priorities. They have impacted issues like:

supported decision-making
respite
childcare

Here are quotes from each member:

“The amount of growth I have experienced as a mom, a teacher, and as a person, I am not sure you can measure any of that growth that I have experienced from the Council, because it is so extensive.” -Lesley Guilaran
“With all certainty I can say my time serving on the Council has been the most meaningful contribution I have made in my life so far.” -Jennifer Coleman

Later this summer, we’ll welcome new members to fill these spots. We recruit all year long in every area of the state to keep a pipeline of leaders in the disability community. If you know someone for us to meet, please let us know: Tnddc@tn.gov.

Lauren Pearcy, Executive Director

Changing Tables, Changing Lives

Tennessee is celebrating a huge disability policy win: The legislature just passed a state budget that includes $1 million dollars for adult-size changing tables. The money will fund grants for tables in 200 businesses and community locations.

It all started with one mom’s story.

Chrissy Hood is our Governor-appointed Council member from Pulaski. You may recognize her as the public face of Tennessee’s work for adult-size changing tables.

Chrissy didn’t know that’s where she was headed when she was appointed to the Council in 2019. She had a story, and she decided to share it with Lauren Pearcy, then the Council’s Director of Public Policy.

Lauren is now our Executive Director. “The issue of adult-size changing tables wasn’t on my radar,” Lauren says. “It just wasn’t something I’d experienced or even heard about. Chrissy spoke so powerfully about how the lack of adult-size tables affects her teenage daughter, Alaina, and their whole family. She talked about it as an issue of community access and basic dignity. As we brought the issue to the full Council, other members shared how they were also affected, or had seen the issue in their communities. Those who were not familiar, like me, instantly wanted to help. To our pleasant surprise, so did policymakers and businesses.”

The Council went to work.

It’s the magic formula of our Council: Members bring their stories. Staff bring expertise and resources to make sure those stories are heard where they can matter most. In 2020-21, our members met with their legislators. They met with local community leaders and businesses. They wrote letters we shared with policymakers. They appeared in videos. They wrote op-eds and talked to TV reporters. They researched details and brought us new ideas for outreach. The Council took out billboards and wrote a one-pager that spread across the state. The work was picked up by many of our Partners in Policymaking® scholars and graduates. Other disability organizations joined the effort and helped build awareness.

A bill was introduced in 2021.

Chrissy’s representative, Clay Doggett (R-Pulaski), was the House sponsor. Member Roddey Coe’s representative, Bo Watson (R-Hixson), was the Senate sponsor. In both cases, our members explained real-life experiences in their own communities. Their legislators were instantly supportive. The bill went through many changes, with lots of input from Chrissy, Roddey, and others over several years. Patience and persistence were key.

At the very end of the 2021-22 legislative session, just a few weeks ago, the content of that bill was passed as part of the state budget. In fact, the legislature DOUBLED the amount of money without being asked!

But there is more.

There were unexpected obstacles and victories along the way. For example, Council members worked with their local governments to get commitments from East Ridge, Smyrna, Pulaski, and Jackson for installing changing tables in public areas. Pulaski now has TWO adult-size tables in public buildings.

After seeing the Council’s video of Chrissy’s story, the TN Department of Transportation committed to putting adult-size changing tables in every rest stop and welcome center in the state, starting in the next few months. The TN Department of Environment and Conservation committed to putting adult-size changing tables in every state park as part of its Access 2030 project.

Thanks to community advocacy, local businesses and attractions like Smyrna’s new Freedom Inclusive Playground, the Adventure Science Center in Nashville, Vanderbilt Children’s Hospital, and Camp Jordan in East Ridge have added or are planning to add adult-size changing tables.

What’s next?

The funds in the state budget will pay for 200 tables at $5,000 each. Tennessee businesses and community locations will be able to apply for a grant to help pay for adult-size changing tables in their buildings. The TN Department of Intellectual and Developmental Disabilities (DIDD) will manage the grant program.

Here’s what you can do:

Start talking NOW to people in your community about the need for adult-size, height-adjustable changing tables. Where does your community gather? That’s where adult-size changing tables need to be! It could be playgrounds, grocery stores, active faith communities, city buildings, shopping centers, theaters or concert venues – anywhere people go to be a part of life in your community. You can be the voice for greater accessibility in your neighborhood. Our website has information you can share about why this issue matters. We’re here to help – email us ideas for locations in your community!
Watch this newsletter for details about how to apply for the grants. We’ll be sharing that information from DIDD as soon as they have the application process ready – likely by this summer.
Help us spread the word! You can help make sure your community knows how to access these grants. Share the application link once it’s available with anyone who might be interested.

Tennessee is now the national leader on adult-size changing tables. With your help, every community in our state can offer access and dignity to people with disabilities, veterans, and aging adults who need a safe changing space.

Wanda Willis gets national award for work for people with I/DD and mental health needs

Wanda Willis served as Executive Director of our Council for more than three decades. Her impact in that role has been far-reaching. This month, she was recognized by a national organization for her work for people with both intellectual/developmental disabilities (I/DD) and mental health needs.

Wanda was awarded the 2022 William I. Gardner Social Justice Award from the National Center for START Services (NCSS) at the Institute on Disability University Center for Excellence in Developmental Disabilities, University of New Hampshire.

The William I. Gardner Award is NCSS’s highest honor. Each year, the award recognizes a national leader who has promoted social justice to improve the lives of people with intellectual/developmental disabilities and mental health needs.

From the letter to Wanda:

“As a disability and family advocate and Executive Director of the Tennessee Council on Developmental Disabilities, your contributions over the years have helped to improve the lives of many with intellectual and developmental disabilities and their families both in Tennessee and across the country, including those with mental health needs. Your knowledge and wisdom were demonstrated as you played a lead role with the TN-START pilot in 2004-2008, the first replication of the START model, and again when you led the DD Council to assist in the now-statewide implementation of TN START across the state of Tennessee in 2019. Wanda, you have been an invaluable colleague and supporter of our efforts.”

– Joan Beasley, Director, National Center for START Services

We asked her about the award and her work on this issue.

Interview with Wanda Willis

What does the award mean to you?

I was speechless and overwhelmed when I learned about the award from Dr. Joan Beasley, director of the National Center for START Services. It was an unexpected honor coming at the end of my 50-year career, 35 years as head of the TN Council on Developmental Disabilities.

How did the Council get involved in bringing START to TN? Why did you see it as important?

More than 20 years ago, the Council brought two divisions together: mental health services and the division of intellectual disabilities. It was a chance to learn about best practices for Tennesseans who had both disabilities – intellectual disability and mental health issues. This is often known as a “dual diagnosis.” The needs in this community are some of the most challenging in our state and across the entire country.

Joan Beasley was a national expert at the University of New Hampshire developing an approach known as START services ("Systematic, Therapeutic, Assessment, Resources & Treatment"). I was blown away by what I learned from Joan. I went to the training session expecting a psychology lecture and tools for writing a 30-page behavioral plan. What I learned was the most person-centered approach imaginable.

The START approach was to back up, look at what was going on around the person, look at physical health, look at the environment, look at the support team. Was there something that WE might be doing to create discord in the individual’s life? My experience on various behavior teams and on incident review boards over the years told me this would work. I felt it was the best, most respectful, and even empowering approach that professionals could take that would actually make a difference.

Tennessee launched a short-lived START program that lasted only a year. However, we now have an amazing program called TN START. It is led by the Dept. of Intellectual and Developmental Disabilities (DIDD). It has been carefully planned so it can keep going into the future. I last heard that 86% of people served in TN START avoided having to leave their homes to get treatment.

What do you most want readers to know about START?

START works. The approach is truly “person-centered.” START treats people with respect. It removes barriers that get in the way of a person’s success in the community, their education, job, and relationships.

START is based on my favorite principle – it’s us, not them. When we work on environmental factors, dive deep into physical history and health, offer opportunities equal to those for peers and siblings, and find a person’s interests and passions, we open doors to life experiences that all of us have. Not perfect, not without challenges, but opportunities to try.

What do you hope is the future for START in TN?

I believe the future of TN START is secure. It is already proving to be a centerpiece of our system in TN.

I look forward to closer partnership among:

TN START
the excellent employment services in TN
the amazing technology programs across departments
and, through the Council, with the many other nationally-recognized disability programs in TN.

That kind of connection will give the best opportunities to Tennesseans with disabilities and their families.

I am reminded daily by individuals and families that we have more to do and gaps to fill. Tennessee has long been recognized nationally for our ability to cross boundaries and work toward a shared vision. START and the people of Tennessee benefit when we work across agencies and programs to deliver the best we have to offer.

Get to Know a Leader: Jeremy Norden-Paul, Division of Program Innovation Director, TN Department of Intellectual and Developmental Disabilities

Some kids know exactly what they want to be when they grow up. I have friends who always knew they wanted to be a nurse or doctor, and others who were 100% sure they would become a teacher. I always envied people who felt so clear and confident about their futures. They seemed to have everything figured out and know exactly how they wanted to contribute to the world.

I was definitely not one of those people. When I was young, thinking about the future made me feel anxious and uncertain.

One big thing I have realized over the years is that no one really has their life completely figured out. Most of us are constantly trying to figure out what we want to be when we “grow up” because our lives and careers are constantly changing. That is part of what makes life so beautiful, challenging, and interesting. Looking back, I am so grateful for my experiences and what they taught me. While I still do not know what the future holds, I feel more confident about how I can make a positive difference in the world and live a meaningful life.

After I graduated from college with a degree in political science and Spanish, I had the opportunity to become an elementary special education teacher in my hometown. I got my teaching certification and a master's degree.

After a couple of years of teaching, I realized two important things. First, educators are incredible and deserve to be millionaires. Second, classroom teaching was a lifechanging experience and I learned so much, but it was not how I wanted to spend my career.

When I made the decision to leave the classroom, I started to have those nervous feelings again about my future. Thankfully my wonderful family and friends reminded me it is okay to feel unsure, it is okay to change directions, and it is okay to do things that make us feel uncomfortable. In fact, those are the very experiences that build our character and help us grow into the fullest versions of ourselves.

I spent the next several years trying different jobs and getting deeper into the disability field. I became a job coach and job developer for people with disabilities. Helping people get jobs in the community was not only rewarding for me personally, but also very positive for the people I helped. These experiences inspired me to work on broader disability policy and service delivery issues. So I took a job as the state director of employment and day services for the Tennessee Department of Intellectual and Developmental Disabilities (DIDD). After that, I became the executive director of the Washington State Developmental Disabilities Council.

Just recently I returned to DIDD as the director of the division of program innovation. Our division creates new tools and services to support people with intellectual and developmental disabilities to create the life they envision for themselves. I have an incredible team and we are so fortunate to get to do this work every day.

If I could go back in time and talk to my childhood self, I would say it is okay to feel unsure about the future. I would also say the most important thing is to find ways to make a positive difference in other people’s lives and there are so many ways to do that.

Our life journey is about figuring about what our unique strengths and gifts are and how to share them with others. With any luck, the journey will be a long and rewarding one.

Please feel free to contact me (jeremy.norden-paul@tn.gov) if you ever want to talk about DIDD’s division of program innovation and how we are helping people become more independent at home, at work, and in their community. You can also contact me if you want to know more about my journey or swap stories about figuring out what we want to be when we “grow up”.

Top 3 Financial Aid Resources for Inclusive Higher Education

We've been hearing questions from the community about how to afford inclusive higher education. We have good news! Tennessee offers financial aid to help students with intellectual and developmental disabilities attend inclusive college programs.

Tennessee has 6 inclusive higher education programs on college campuses, with more in the works right now. Visit TN's Inclusive Higher Education Alliance website to learn more about the programs.

So, how can families get help paying for these programs? We've collected a few great resources to help you learn about your financial aid options.

Financial Aid Information Resources:

TN Inclusive Higher Education Alliance Financial Information for Families webpage (see the PDF chart from Transition TN on this page too outlining options for families)
Think College webpage on paying for college (Plus Think College is hosting a webinar on May 25 on this topic - attend and ask the nation's experts on inclusive higher education your questions!)
Transition Tennessee's webcasts about postsecondary education (select "postsecondary education" check box to narrow down the results)