July 2025

From Our Chief Strategy Officer

Dear readers, 

The month of July is an important time here at the Council, because it marks the beginning of a new state fiscal year. As we close out our reporting for the previous year – fiscal year 2025, which ended in June – we ask you, our readers, for feedback on the information we’ve shared. 

Believe me when I say I understand survey fatigue! I know you’re asked constantly for feedback. With that in mind, I humbly hope you’ll consider taking 5-7 minutes to fill out this survey. 

Was Council on Developmental Disabilities info helpful in FY2025?

Here are two reasons I think this survey is worth your time: 

• We use your responses to help us know how we did and to steer our communications work for the next year – really. 
• Your responses help the federal agency that funds our work to know the impact we are having in Tennessee.  

Thank you for following our information – and thank you for spending a little of your valuable time offering us feedback. We are truly grateful!

Take care,

Jolene Sharp

Upcoming Opportunities

Vanderbilt Kennedy Center 60th Anniversary Virtual Celebration

The Vanderbilt Kennedy Center (VKC) has been working for 60 years to improve how we understand and support people with intellectual and developmental disabilities.

You are invited to a free online event to celebrate this anniversary. You will get to hear from national experts and past leaders about how VKC has helped shape research, training, and services and what they hope to see in the future.

Speakers include researchers, advocates, and professionals connected to the Tennessee disability community. They’ll talk about programs like IDDRC, UCEDD, and LEND, and how those programs help improve services and supports.

Live captions will be provided. To ask for other accommodations, email kc@vumc.org or call 615-322-8240 by August 26. To learn more and sign up for this anniversary event, click here.

Policy Corner: Council News to Know

Dear readers,

You’ve probably been seeing news stories for several months now about how the recent “budget reconciliation bill” might impact Medicaid. It is also called the "One Big, Beautiful Bill Act.” Everyone is still learning what this bill will mean for each state. Many decisions that may affect people or healthcare providers like doctors or hospitals have not yet been made.

In the meantime, we want to share our current understanding of the key parts of the bill and their effect on Tennesseans with disabilities. We’ve done our best to offer clear and accurate information below. 

What is budget reconciliation? What does it have to do with Medicaid?

Background: Budget reconciliation is a special process in Congress where lawmakers make changes to taxes and “mandatory spending.” Mandatory spending is spending required by laws to fund programs in bills that have been passed by Congress. Medicaid is a big (often the biggest) part of “mandatory spending in states.

• Congress voted to pass the budget reconciliation bill, or “One Big, Beautiful Bill”, and President Trump signed it into law on July 4. 
• The new law makes changes to how the federal government gives money to states for their Medicaid programs and makes changes to Medicaid rules.

What Medicaid changes from the “One Big Beautiful Bill” apply in TN? 

Background: In Tennessee, Medicaid is called TennCare. Medicaid pays for healthcare for more than 250,000 Tennesseans with disabilities. It also pays for help that tens of thousands of Tennesseans get through long-term services and supports (ex: Katie Beckett, ECF CHOICES, CHOICES, 1915c waivers, etc.), in addition to their regular healthcare coverage. In total, more than 1.4 million Tennesseans use Medicaid, about 20% of the state’s population.

• Many changes in the One Big Beautiful Bill that got a lot of news coverage won’t apply in Tennessee. This is because Tennessee did not expand Medicaid to more low-income adults like 40+ other states. We are a “non-expansion state.”
• Other changes in the bill come from stopping or delaying new rules issued under the previous Biden Administration. States were in the process of implementing these rules but had not yet fully complied with them. It’s hard to understand the impact of stopping or pausing those efforts. (Examples: Nursing home minimum staffing rule; Medicaid and CHIP enrollment and eligibility rule.)
• It will take several months to know exactly what changes will take effect here in Tennessee. Right now, TennCare is analyzing the bill and waiting for the federal government to issue more guidance. Based on what we know now, here is what we know about the key provisions:

Changes in the following areas are NOT expected to apply to TennCare or may only affect a few people:

• Eligibility determinations (ex.: who can get TennCare or how often people are checked for qualifying for TennCare)
• Work requirements or proving that work requirements do not apply to you or a loved one
• How TN uses provider taxes to fund TennCare
• Rules about the overall 1115 waiver (the entire TennCare program as “managed care” is what is known as a 1115 waiver) or how TN uses “shared savings”. TN’s 1115 waiver is already “budget neutral” as required by the law.
• A new cap of $1,000,000 on home equity for individuals receiving Medicaid-funded long-term services. TN’s cap is below this, so this won’t change anything in TN. 

Changes that ARE expected to impact TennCare … but it is hard to know what impact they will have or how many people it will affect.

• New limits of the overall amount of “state-directed payments” (by 2028, they cannot exceed 110% of Medicare rates for the same service). 
  • These dollars are funds above and beyond normal Medicaid rates that health plans pay healthcare providers or facilities for better quality care and outcomes. This will affect some healthcare providers/facilities who accept TennCare payments directly from the state. 
• Reducing retroactive Medicaid coverage from 3 months to 2 months for most Medicaid populations. 
  • This reduces how many past healthcare expenses that an applicant for TennCare can get covered after they are enrolled.
• New rural health transformation program, consisting of $50 billion across 5 years to support state initiatives to improve rural health. 
  • We won’t know how Tennessee can or will use these funds until CMS releases rules later.

What comes next? What can I do?

• Let us know if you have questions after you read this update! Your questions help us learn and share with policymakers what the disability community is concerned about. We may not have immediate answers for you, but we can research and plan to address in future newsletters. If you hear from your Medicaid providers or health plans that certain changes to your services are happening because of this bill, let us know: tnddc@tn.gov. 
• Keep educating your state legislators and members of Congress about how you and other Tennesseans with disabilities rely on TennCare. Help them understand what changes you’d like to see in the program and what your concerns are.
• Keep reading our monthly e-news and following us on social media for:
  • News about the next cycle of federal budget debates on appropriations, which will deal with other disability programs - like funding for our Developmental Disabilities Network partners, University Centers for Excellence in Developmental Disabilities, which the President’s budget proposed to eliminateOpportunities to influence TennCare decisions through state legislative session, public comment periods, open meetings, and more.

- Emma Garton, Policy Director

Get to Know a Leader: Lynette Porter

As Deputy Director of the Tennessee Council on Developmental Disabilities, Lynette Porter has seen big changes in the disability community in Tennessee over the past 20 years.

To celebrate our 50th anniversary, we talked with 14 disability leaders (past and present) for a special edition of Breaking Ground magazine. We couldn’t fit everything in the magazine, so we’ll be sharing more of their full interviews throughout the year. Sign up here to get updates when new content is available.

In this e-newsletter, we’re excited to share a short excerpt from Lynette’s interview.

Q: What stands out as the single most important milestone you witnessed?
A: The most important milestone I've witnessed took over 10 years to operationalize. When I started with the Council in 2000, all 3 of the State's developmental centers were still operational... The shift in institutional care to supported community living wasn't like flipping a switch, it was more like a series of slow-falling dominos.

Q: What lessons should today's advocates keep in mind?
A: The work is never over. While individuals with intellectual disabilities live and sometimes work IN the community today, we have to ask if they HAVE community... Sometimes, it can feel like we didn't take down the fence, we just expanded the institutional land size.

Q: If you could give one piece of advice to the next generation of leaders, what would it be?
A: Always start with people – people with disabilities and their families. Build deliberate, constant, intentional ways to listen to, understand, and react to the needs and values of the people who will use the system you are trying to build or improve.

Read the full length interview with Lynette online now.

Community Events & Training

Disability Empowerment and Advocacy Luncheon

You’re invited to join Disability Rights Tennessee for their 2025 Disability Empowerment and Advocacy Luncheon (DEAL) on October 20, 2025 at the Music City Center in Nashville.

This event brings together people with disabilities, self-advocates, community members, and leaders from across Tennessee. DEAL is about sharing stories, removing barriers, and taking action to make sure everyone can belong and contribute.

Ticket Options:

• Professional – $150
• Community (nonprofit staff, students, families) – $75
• Pay-It-Forward – $75 (sponsor a self-advocate)
• Sponsored Ticket – Free for people with disabilities and self-advocates
  

To request a free Sponsored Ticket, call 1-800-342-1660 or email LeeS@DisabilityRightsTN.org.
Want to help sponsor the event and support more access? Contact Lee Sherwood, Director of Community Relations and Development, at 615-490-3844 or the email above.

Register for DEAL 2025

New Free Toolkits: Cognitive Behavioral Strategies for Autistic Students

The Vanderbilt Kennedy Center has shared two free toolkits to help teachers and school staff support autistic students. The toolkits were developed through the Vanderbilt Consortium LEND program and the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD). 

The toolkits use a method called Cognitive Behavioral/Instructional Strategies (CBIS). This method teaches students how their thoughts, feelings, and actions are connected. It helps them build skills to understand themselves and manage their emotions.

These tools are great for teachers, school teams, and anyone who works with students who have developmental disabilities.

These toolkits are:

• Easy to use
• Research-based
• Designed with the needs of autistic students in mind

The toolkits include:

• CBIS Toolkit for Elementary Students (PDF)
  For people working with younger students in elementary school.
• CBIS Toolkit for Adolescent Students (PDF)
  For people working with middle and high school students

There is also a free online course if you want to learn more.

You can access this by going to triad.vkclearning.org.
Create a free account, or log in if you already have one.
Then, look under the “School-Age Services” section.

You can also email mary.dangerfield@vumc.org to ask questions or request printed copies of the toolkits.

These resources are free to the public and can make a real difference in classrooms and homes across Tennessee.

Jobs

Director of State Innovation Centers

The Department of Disability and Aging is hiring a Director of State Innovation Centers to lead the creation of “one-stop shop” regional hubs for disability and aging services. This statewide leadership role focuses on designing welcoming, coordinated spaces for people with disabilities, older adults, families, and service providers. View and apply for the job here.