January 2026

From Our Chief Strategy Officer

Dear readers,

Our family attended my daughter’s annual Individualized Education Program (IEP) meeting this week. Lina has Down syndrome and is 13 – the age when the state requires her IEP to begin planning for transition out of school as an adult.

It feels pretty early, but I understand why we do this. The goals and expectations we have for Lina’s future help steer her path, even in middle school. 

The parent transition questionnaire asked about those expectations. What kind of job might Lina have? Where will she live? How will she get around in her community? What kind of relationships might she have?

It made me wonder: How often do we parents allow our response to questions like these to limit possibilities? Lina is still young. Some of the questions felt hard to answer. After some reflection, I decided to choose the widest open option for every question. My answers were based on what Lina tells us. She wants to live on her own someday. She wants to be a hairdresser. She wants to drive. She wants to get married.

Research shows that parent expectations are the most important predictor of post-school outcomes for children with significant disabilities. I don’t know what support for Lina’s goals will look like by the time she exits high school. I DO know that it’s our job – parents and educators together – to help Lina prepare for the future she wants. She may not always come out where she hoped. I’m realistic about the creativity and persistence it will require from all of us. This is not an easy path. But I believe it’s worth the struggle. Aiming high always is.

As we begin a new year, my fondest hope is that together, our disability community’s path is steered by the very highest expectations. We’re aiming for nothing short of a Tennessee where people with disabilities and their families fully belong and thrive. That path is hard – often much harder than it should be. But I believe it’s worth the struggle. Aiming high always is.

Onward!

- Jolene Sharp

Welcome our new intern: Bayleigh Pirtle

We are excited to introduce Bayleigh Pirtle, who has joined the Council on Developmental Disabilities as our newest intern!

Bayleigh is a senior at Lipscomb University (Class of 2026), where she is studying Disability Studies. She is also minoring in Family Studies and Law, Justice, & Society.

Bayleigh has been involved in disability advocacy for years. She volunteers with Sumner County Special Olympics and the Special Needs Sports Foundation.

Before joining us, Bayleigh interned with Disability Rights Tennessee, where she checked polling locations across the state to make sure they were accessible for voters with disabilities

She also worked as an Inclusion Specialist at the Jewish Community Center, helping campers with different support needs have a great summer camp experience.

Currently, Bayleigh is also interning with two other programs at Lipscomb. At the IDEAL Program, she works with adults with intellectual and developmental disabilities on life skills and job training. At the BEST Program, she helps run a peer mentoring program for college students with disabilities.

We appreciate that Bayleigh shares our values of promoting independence, inclusion, and self-determination for people with disabilities. She is passionate about advocacy and excited to learn more about disability policy. We are thrilled to have her on our team and look forward to all she will accomplish during her time with us!

Upcoming Opportunities

Disability Day on the Hill  

Registration is now open! 

Every year, the Tennessee Disability Coalition brings people together from across Tennessee to Nashville to advocate for disability rights and inclusion during Disability Day on the Hill. We are proud to be a Bronze Sponsor for this event and will be sponsoring the quiet space at Cordell Hull.

This year’s “rallying cry” is Adventures in Access.

Navigating life with a disability in Tennessee is often an adventure – both in the challenges and the rewards that come with everything from accessing healthcare and education to using public spaces and basic services that allow us to stay healthy, independent, and connected to our communities.

Disability Day on the Hill is your chance to meet with your legislators and share your story. You can click here to watch a video about how to schedule a meeting with your legislator.

Throughout the day, you can also attend legislative committee hearings, visit TDC’s exhibit table on the first floor, or join their advocacy workshop on the second floor. Volunteers in gray t-shirts will be available to help you.

Mark the Date:

• TDC Community Party: Tuesday, February 24 at 5:00 p.m. at the Adventure Science Center
• Disability Day on the Hill: Wednesday, February 25 at 9:00 a.m. at the Cordell Hull Legislative Offices
• Disability Advocacy Day: Wednesday, March 11 (Virtual)

RSVP by February 10, 2026 to attend and request any accommodations you need.

Help Improve Special Education in Tennessee

If you are a parent or caregiver of a student who receives special education services, Family Engagement in Special Education wants to hear from you.

Family Engagement in Special Education is a partnership between The Arc Tennessee and the Tennessee Department of Education. They connect families and schools so students with disabilities get the support they need. They also provide free resources for families and training for schools.

They are currently asking Tennessee families to complete a survey about their experiences with special education. Your answers will help them understand what's working well and what needs to improve.

The survey is anonymous and only takes a few minutes to complete.

Take the Family Experience Survey by clicking here.

New Toolkit Helps You Advocate at Home

The National Down Syndrome Congress has released a State and Local Policy Advocacy Toolkit to help you make change in your own community. This toolkit makes it easier to get started and feel confident speaking up. It is built for self-advocates, families, and allies.

Many people think advocacy only happens in Washington D.C., but some of the most important decisions that affect people with disabilities are made right here in our state by the Tennessee General Assembly, school boards, and city and county councils. This toolkit can show you how to connect with local leaders and share your story in ways that create change.

This toolkit contains practical examples like:

• One-page summaries about important topics you can give to lawmakers,
• short “elevator speeches” you can use when you meet someone in passing, and
• tips for sharing your message on social media.

It also explains how to:

• give testimony at hearings, and
• build relationships with the people who make decisions in your community.

Whether you've never contacted an elected official before or you're looking for new ways to advocate, this toolkit can make it easier to get started and feel confident speaking up.

View the toolkit by clicking here.

Policy Corner

We'll have a longer update for you in February. In the meantime, two key things to know:

• The legislature officially started last Tuesday, January 13, 2026. Legislators are busy discussing bill ideas. All bills must be filed by the end of next week. After the filing deadline passes, we at the Council will share the bills we are tracking.  
• The Governor’s State of the State Address is expected to be held on Monday, February 2. That is when we find out about Governor Lee’s budget priorities for his final year in office.

- Lauren Pearcy, Executive Director

Get to Know a Leader

Amy Howell, Vocational Rehabilitation

The TN Department of Human Services, Division of Rehabilitation Services recently announced Amy Howell as its new Vocational Rehabilitation (VR) Director. Amy previously worked in Tennessee’s VR program before moving to the national level. She has returned to Tennessee to assume her new position. Vocational Rehabilitation (VR) helps people with disabilities find and keep jobs.

Amy brings more than 20 years of experience helping people with disabilities get jobs. She has worked on policy, programs, and system improvements throughout her career. Most recently, she directed projects for the U.S. Department of Education, where her work was presented to Congress and helped shape how the country thinks about employment for people with disabilities.

Before that, Amy held several leadership roles in our state’s VR program, where she strengthened partnerships, improved training, and helped make services better across the state. She holds advanced degrees in public administration and rehabilitation counseling and is a Certified Rehabilitation Counselor.

Amy is looking forward to making sure people with disabilities have real opportunities to work in their communities and build successful careers.

Governor Declares State of Emergency for Winter Storm

Governor Bill Lee has issued a State of Emergency for all 95 Tennessee counties ahead of a major winter storm expected to hit this weekend.

The National Weather Service predicts the storm could bring snow, ice, freezing rain, and dangerously cold temperatures starting as early as Friday evening, January 23, and lasting through Sunday, January 25. Cold weather is expected to continue into next week.

The Tennessee Department of Transportation (TDOT) is already preparing roads by treating them with salt and other materials. When the storm hits, crews will focus first on clearing interstates and major highways, especially bridges, hills, and curves where ice forms quickly

The Tennessee National Guard is preparing vehicles and supplies to help transport people to hospitals, assist stranded drivers, and set up emergency shelters if needed.

Stay Safe

• Avoid travel unless absolutely necessary. If you need to get to medical appointments or therapy sessions, call ahead to see if they can be rescheduled or done virtually.
• If you must drive, slow down and give yourself extra space between cars.
• Never use generators indoors - place them at least 20 feet from your home.
• If you or someone you care for needs a warm place to stay, contact your local emergency management agency or view this map to find warming centers in your area. Ask about accessibility when you call.
• If you rely on home health services or personal care attendants, discuss what you can do to stay safe and plan ahead of time in case they cannot reach you.

For the latest weather updates and road conditions, visit the Tennessee Emergency Management Agency (TEMA) website or check TDOT's SmartWay Map.