June 2025

From Our Chief Strategy Officer

Dear readers,

 We mentioned in last month’s Council News that we expected more details soon on the President’s proposed budget for federal fiscal year 2026.

We now have more information.

Here is what we know:

• The President has proposed funding Councils on Developmental Disabilities at about the same level as previous years.
• His proposed budget also appears to level fund Protection and Advocacy agencies (Disability Rights Tennessee in our state), but the specifics are less clear in the information available now.
• The President’s budget proposes eliminating University Centers of Excellence in Developmental Disabilities (UCEDDs). In Tennessee, we have two UCEDDs: University of Tennessee Center on Developmental Disabilities and Vanderbilt Kennedy Center.

There are many steps before a final budget is approved for federal fiscal year 2026

• The budget is drafted and passed by Congress through an appropriations process. The U.S. House and Senate make the final decisions about how to spend federal dollars.
• The new federal fiscal year begins in October, but the budget process is often delayed well beyond that point. We probably won’t see details from Congress on a new budget until next spring.
• In the meantime, government is typically kept running through continuing resolutions that provide temporary funding level with the previous year.

You may know that our Council does our work as one of three coordinated branches of our state’s Developmental Disabilities Network, created under the same federal law.

• Councils on Developmental Disabilities are the policy change
• University Centers of Excellence in Developmental Disabilities are the research, training, and clinical services branch - Vanderbilt Kennedy Center and University of Tennessee Center on Developmental Disabilities in our state.
• The Protection and Advocacy agency is the legal monitoring, investigation, and advocacy branch - Disability Rights Tennessee in our state.

The Developmental Disabilities Network is the only source for this comprehensive support to the statewide developmental disability community. Our DD Network in Tennessee works very closely together to do this work efficiently. The loss or reduction of one branch of the network would make all our agencies less effective.

We’ll be sharing more information in the weeks ahead about the coordinated work of our Tennessee DD Network. We’ll also provide ways to share your stories about why this work matters to you.

If you want to act sooner, it is always appropriate to let your legislators know what issues are important to you. As always, we encourage you to build relationships with your representatives. Focus on constructive conversations about your experiences and the issues you care about. Emma Garton’s public policy corner below will offer more information about national and state happenings. We’ll continue to keep you informed and offer ways to engage.

On a more personal note, I also encourage you to take time away from current events to rest and connect with nature and the people you care about. I’ll be doing that myself next week, as my husband and I take a road trip to celebrate our anniversary – 23 years on the 23rd!

Stay well, everyone,

Jolene Sharp

Get to Know a Leader: Lauren J. Pearcy

As the current Executive Director of the Tennessee Council on Developmental Disabilities, Lauren J. Pearcy brings a unique perspective on creating lasting change in the disability community. To celebrate the Council’s 50th anniversary, we interviewed 14 disability leaders (past and present) for a special edition of Breaking Ground magazine. (The magazine will be hitting inboxes and mailboxes very soon! Want to make sure you see it? Subscribe for free to our quarterly magazine!)

In this e-news edition, we’re sharing a small piece of Lauren’s interview. Read more to learn about her reflections on key milestones, the impact of mentorship, and what she envisions for the next 50 years of disability advocacy in Tennessee. We’ll be sharing more of her interview as our anniversary celebration continues throughout this year.

Q. What lessons should today's advocates keep in mind?

I think one of the things that has always been clear to me is that legislation is only the tip of the iceberg. It doesn't matter what you pass into law if it's not implemented well, and if people don't know about it. Sometimes this idea of culture change or thinking differently or pushing a certain philosophy that is embedded throughout existing programs and the way we implement laws is one of the biggest ways we can make change.

Q, What drew you to this leadership role at this point in your career?

My career has not really looked like I have aspired to roles in my career. Ever. I have just taken this advice that my dad gave me when I was graduating college, and he said, “Just walk through the doors that open.” You know, you have to be willing, I think, to take a leap of faith and walk through those doors.

Q: What's your vision for the Council's next chapter?

A: I want to simplify what we focus on. So historically, we have been able to focus on so many things and a huge breadth of topics. In the near future I see that as sort of narrowing, so that we can go an inch wide, mile deep versus a mile wide, inch deep... There is nothing more important than Council members and partners, graduates and alumni, and our own staff's lived experience guiding our way.

Q: If you could give one piece of advice to the next generation of leaders in our field, what would it be?

A: Stay on the same team. Stay on the same team as your peers within the disability community. Don't let yourself get involved with infighting and territorialism... And then extend that to the folks you feel like are on the other side of the issue from you. Figure out a way to put the problem on the other side of the table so that you and whoever you're working with can be on the same side.

You will be able to read the full, unedited interview with Lauren online in September.

State Employee Leadership Academy Kicks off Sixth Year

We’ve just kicked off LAEDS, the Leadership Academy for Excellence in Disability Services!

LAEDS is a leadership development program for state employees whose work has a direct impact on Tennesseans with disabilities and their families. We lead this academy in partnership with the TN Department of Human Resources. The goal is to ensure that leaders who work in state government programs that serve Tennesseans with disabilities operate from a shared set of values, goals and principles. The academy builds relationships and collaboration among state agency partners.

This year’s class had 24 participants. While it is our 6th cohort, it is the first led by our new Director of Leadership Development, Blake Shearer - a graduate of the second LAEDS cohort. He’s been doing an excellent job so far, bringing both his own experience having been in the program, and a fresh perspective to the role.  

At their first summit, they took part in Executive Roundtables with state leaders, including:

• Commissioner Brad Turner (Department of Disability and Aging),
• Assistant Commissioner Kim Yap (Department of Human Resources),
• Deputy Commissioner Matt Yancey (Department of Mental Health and Substance Abuse Services), and
• Director Brian Clifford (Department of Environment and Conservation).

The cohort also learned from leading experts:

• Sybril Brown, professor at Belmont University, led a session on communicating effectively.
• Bruce Keisling gave a powerful overview of the history of disability services in our state and nation.
• Emma Shouse Garton walked participants through the LifeCourse framework and how to reimagine service delivery around people’s real lives.

We are proud to support leadership that is collaborative, informed, and deeply committed to making real improvements in the lives of Tennesseans with disabilities.

Policy Corner: Council News to Know

Hi readers,

There are many ways to influence state public policy outside of the legislative session.

One way (though sometimes hard to understand or do) is by providing public comment. Many state agencies in the executive branch are required by law or by the terms of their funding to give the public a chance to review and weigh in on state services or plans regularly.

This is an opportunity for community members to share with policymakers their ideas for improving government programs and policies. Often, state leaders must respond to these comments in writing and post the responses to their websites.

Each year, TennCare holds a public forum to accept comments from the public about all the services it provides (the entire “TennCare demonstration”). Their next public forum is scheduled for June 27, 2025, at 10:00 a.m. Central Time.

If you have thoughts on what is working well or what is not working well about Medicaid services for Tennesseans with disabilities, this is an important opportunity to be heard. If you or your loved ones use TennCare for healthcare or for home- and community-based services (like the 1915(c) waivers through the Department of Disability and Aging, or the Employment and Community First CHOICES program), your input matters!

You can:

• Attend the forum in person at the TennCare state office in downtown Nashville (RSVP to attend in person here). It will be held in Room 320.3E of the TennCare building, 310 Great Circle Road. Please arrive a few minutes early to allow time for check-in at the front desk, and bring a state-issued ID.
• Attend online (RSVP to attend online here).
• Send written comments:
  • By mail (received by June 27):
    Aaron Butler, Director of Policy
    Division of TennCare
    310 Great Circle Road
    Nashville, TN 37243
  • By email: public.notice.tenncare@tn.gov

A lot of policy decisions about public services for people with disabilities are being made right now - many at the federal level. While some of those big-picture funding and legal decisions are outside the scope of this opportunity, this public forum is a meaningful way to be heard by the state leaders who run TennCare programs that affect your life.

Speak up and take care!

Emma Garton

Public Policy Director

News to Watch and Read

• Recorded webinar: The Path Forward: Insights from the Tennessee DD Network Needs Assessment Survey
• TN Treasury Department - Access expanded for thousands of Tennesseans with disabilities to save and invest with ABLE TN- Featuring quote by Council executive director Lauren Pearcy
• TN State Parks - 8 Tennessee State Parks Add Adult-Sized Changing Tables
  • Many of our staff and Council members have been involved in the Access 2030 initiative in State Parks that coordinates this work! Read more here.
• TennCare – Frequently Asked Questions about a proposed rule change for private duty nursing
• The Sycamore Institute - Federal Safety Net Programs in Tennessee; Access to Housing in Tennessee: The Federal, State, and Local Policy Levers; Tennessee Ranks 37th in 2025 KIDS COUNT Data Book as Academic Achievement Improves, Health Metrics Decline
• National Council on State Legislatures - State Options for Improving Care for People with Intellectual and Developmental Disabilities

Important Change: Where to File Discrimination Complaints Starting July 1

The Tennessee Human Rights Commission (THRC) is closing on June 30, 2025. This agency has helped people report disability, housing, and job discrimination for 60 years.

Starting July 1, 2025, if you believe you have been treated unfairly because of your disability, your race, your age, or other protected reasons, here’s what you need to know:

You will now report discrimination to the Tennessee Attorney General’s Office.

Here’s how to contact them:

• Email: CRED@ag.tn.gov
• Phone: (615) 741-3491
• Mail: P.O. Box 20207, Nashville, TN 37202

If your issue is about Title VI (discrimination in programs that get federal money), you will contact the Department of Human Resources, instead.

If you already filed a complaint with THRC and it is still open after June 30, it will be closed. However, you can re-file your complaint with the Attorney General’s Office starting July 1.

Even though the Commission is closing, your civil rights are still protected by law. You still have the right to report discrimination and ask for help.

• If you have questions before June 30, you can still contact the THRC:
  800-251-3589
• thrc@tn.gov

Community Events & Training

2025 Family & Youth Conference – August 7 in Nashville

The Tennessee Department of Health is hosting its annual Family & Youth Conference on Thursday, August 7, 2025, in Nashville. This year’s theme is “Elevating to New Heights: Voices in Action!”

Date: Thursday, August 7, 2025
Location: TN State Library and Archives, 1001 Rep. John Lewis Way N, Nashville, TN
Time: 8:00 a.m. – 4:00 p.m.

The conference will focus on big changes and life transitions that many young people and families go through.

Topics will include:

• Mental health
• How to keep getting care when life changes (like switching doctors or insurance)
• Speaking up for yourself (self-advocacy)
• Social media and how it affects us
• Bullying
• And more

The event will include speakers, panels, and break-out sessions where families can learn, share, and connect with others.

This is a great chance to meet other families, share your story, and help shape how Tennessee supports youth and caregivers. Members of the Family and Youth Advisory Councils will be there to listen and lead these important conversations.
Registration is free but required. Sign up by July 25. 2025.

You can access the flyer for this event here. 

Free Webinar About Jobs and Accessibility

The Knoxville Area Employment Consortium (KAEC) is hosting a free online event on Thursday, June 26 from 12:00 to 1:00 p.m. Central Time.

The webinar is called "When Community is Accessible, Employment is Possible." You’ll hear real stories about how making workplaces more accessible helps people with disabilities find and keep jobs.

This event is for:

• People looking for work
• Employers and hiring managers
• Family members, advocates, and supporters

You’ll learn:

• How welcoming work environments help people succeed
• How employers can build more inclusive teams
• Tips for people with disabilities to speak up for what they need at work

This webinar will help explain how making things more accessible helps everyone.

Want to join?
Register for the webinar here or click here to go to the KAEC website.
Have questions? Email kaectn@gmail.com

In addition, you can access the flyer for the event here.

Free Crisis Training & Sensory Kits for Emergency Medical Services (EMS) Teams

Family Voices of Tennessee and the Children's Emergency Care Alliance (CECA) have partnered with TN-START to offer free crisis training and sensory kits for emergency responders. This program focuses on supporting individuals with intellectual and developmental disabilities during emergency medical transport.

They are offering free crisis training that teaches EMS teams how to better support people with intellectual and developmental disabilities during emergencies.

In addition, they are offering a sensory kit for ambulances that includes:

• Noise-cancelling headphones
• Sunglasses
• Fidget items
• Communication cards

This project is part of the work being led by Ashlie Bell-Seibers, Director of Family Voices of Tennessee and a recent Partners in Policymaking graduate.

How to request training and a kit:

Due to limited availability, Family Voices is currently offering one kit per agency. Preference is given to EMS agencies, but law enforcement agencies can also apply.

If your agency is interested in this opportunity, contact:

Ashlie Bell-Seibers, Director
Family Voices of Tennessee
Email: ashlie_s@tndisability.org
Phone: 615-723-6496

You can also reach out to former Council member Chrissy Hood at chrissy_h@tndisability.org for more information about this program.

Survey: Help Improve the Pathfinder Website

We want to hear from you! Tennessee Disability Pathfinder is a hub for information and resources for people with disabilities, their family members, and professionals.

Each year, Pathfinder surveys users to evaluate the accessibility and usefulness of their website. If you’ve used the Pathfinder website in the past year, we hope you’ll take 3–4 minutes to tell them how it went.

Your feedback helps them make sure the website is easy to use and gives people the information they need. Whether it worked well for you or you ran into problems, we want to know.

Take the survey here to get started.

Thank you for helping us make Pathfinder better for everyone!