May 2025

From Our Chief Strategy Officer

Dear readers,

In a time of fast changing policy news, it can be hard to know what’s really happening and how it affects the disability community we love. When big changes are debated – for example, discussions happening now in Congress about changes to Medicaid – the uncertainty can create a lot of concern for people whose lives could be impacted.

Our Council exists to provide nonpartisan, expert information to help you understand policy that affects people with disabilities. We talk often with our team about our role as “the sage” – a wise and calm guide for Tennessee’s disability community. Of course, we won’t always have all the answers. In today’s environment, the list of what we DON’T know is often longer than what we DO know.

But we can make this commitment to you:

• We will do everything in our power to sort through the noise and understand what’s really happening with policies that affect Tennessee’s developmental disability community.
• We will share that information as clearly as possible with you.
• We'll help you connect to other reliable sources of information.

To that end, don’t miss Emma’s excellent policy corner summary below on what’s happening with Medicaid. And stay tuned for more information about the President’s proposed budget for fiscal year 2026. Further details are expected to be released in the next few weeks.

Our team also talks about the importance of staying balanced by unplugging often to spend time with our families and communities, in nature, and on activities that bring us joy. I hope you’re able to spend at least a few minutes on something that brings you joy today!

Take care, everyone,
Jolene Sharp

P.S. The application window for Partners in Policymaking® is closing very soon. Don't miss your chance to be a part of this year's class of change makers! See details below.

Applications Now Open: Partners in Policymaking® 2025–2026

The Council is now accepting applications for the 2025–2026 class of Partners in Policymaking®, our free leadership and advocacy training program.

For more than 30 years, Partners has helped people with developmental disabilities and their family members learn how to make real, lasting change in their communities and across the state.

Over 8 months, participants will learn how to:

• Understand and influence disability policy
• Build relationships with elected officials and leaders
• Speak up for changes that support inclusion, independence, and opportunity
• Connect with a network of advocates across Tennessee

Sessions are held once a month, and there is no cost to participate. The program includes overnight hotel stays and meals during each session for accepted participants.

Questions? Contact Blake Shearer at Blake.A.Shearer@tn.gov or (615) 955-4256.

Congratulations to the 2024–2025 Partners in Policymaking® Class!

The Council is proud to celebrate the newest class of Partners in Policymaking graduates! These new leaders represent the next wave of advocates and changemakers for people with developmental disabilities across Tennessee.

Over the course of this long-running leadership training, participants learned about disability history, best practices in advocacy, and how to effectively influence public policy.

They built lasting connections, gained tools to lead change, and - most importantly - raised their voices to be heard.

Get To Know a Leader: Anna Bass, Disability Rights Tennessee's Executive Director

Anna Bass became the leader of Disability Rights Tennessee in early 2025. She has worked for nearly 20 years helping people with disabilities get fair treatment. Now, as Executive Director, she works to protect the rights of people with disabilities and mental health needs in all parts of Tennessee.

Q. What’s a common misconception about disability rights or advocacy that you wish more people understood?
A. Disability is a unique experience to only a few people.  On the contrary, disability affects almost everyone at some point in every life either directly or indirectly.   So, as we advocate for disability rights, our goal is common understanding and foundational rights: safety, dignity, informed choice, and community engagement.  

Q. If you could eliminate one significant barrier faced by Tennesseans with disabilities today, what would it be/how would removing that barrier change lives?
A. That is a challenging question. Having worked in legal advocacy for nearly two decades, I have observed numerous barriers faced by Tennesseans with disabilities. Many of these are the fire that keep me going.  However, I have also seen some of these barriers removed through community advocacy, litigation, and other initiatives. At this moment, I believe that the most immediate barrier to address would be eliminating abuse and neglect in environments where individuals live, work, learn, or receive services. Following that, ensuring freedom to participate in the community without accessibility or attitudinal barriers would be the next priority.    

Q. In what ways do you think DRT is unique among agencies and organizations serving people with disabilities in the state?
A. The three elements that define DRT's uniqueness are its authorities to perform its scope of work, its team members, and the broad range of disability experiences addressed by DRT's services. DRT is unique in its capacity and mandates to carry out its organizational mission.

As the designated Protection & Advocacy (P&A) agency in the state, DRT is mandated and funded by Congress to undertake various tasks, including monitoring facilities, investigating instances of abuse and neglect, and when possible also provide advocacy and resources in other areas.

Our team is comprised of advocates and attorneys with diverse relationships to disability, varied work backgrounds, and prior experiences that enhance their effectiveness. Through lived experience and/or specialized training, DRT’s staff is committed to carrying out the agency’s mission and protecting the rights of all Tennesseans living with disabilities and/or mental illness.

DRT serves not just one disability sector, one community, or one age group. DRT’s programs span all ages from birth to old age, strive to address all disability and mental health communities’ needs, and operate in all 95 Tennessee counties. With eight programs, our areas of focus include employment, residential safety, voting accessibility, community living, resource connection, protection from financial exploitation, communication access, and many other areas of life for Tennesseans living with disabilities and/or mental illness. Our work is driven and informed by direct annual input from Tennesseans living with disabilities and/or mental illness(es).

Q. What’s the best advice you ever received about leadership or advocacy, and how does that advice guide you in your work?
A. “There is no finish line.”  This principle guides me daily, as I have come to understand that celebrating progress is merely a brief respite before we must get up and continue our efforts towards cultivating the vision of a community free from harm, discrimination, and barriers.  

Q. Outside of your work, what helps you recharge so you can continue your advocating?
A. As advocates, I firmly believe it is important that we have small and large moments of breathing room to recharge. I make a deliberate effort to stay balanced by engaging in activities that provide that recharging time such as challenging myself to continuously learn new skills, spending time tending my garden, enhancing my culinary abilities, enjoying a comedy or animated movie selected by my family, sitting with my very old dog, playing cards with friends, or spending time in silent prayer or meditation.   

How to Connect:

• Website: DisabilityRightsTN.org/Get-Help
• Email: GetHelp@DisabilityRightsTN.org
• Phone: 1-800-342-1660 or 615-732-6970
• Social Media: Facebook, Instagram, Threads, LinkedIn, and X

Partners Alumni Spotlight: Katie and Peach at the 2025 Virtual Tech Summit!

Katie Moore and Peach Chinratanalab, both graduates of Tennessee’s Partners in Policymaking® program, will be presenting at the upcoming 2025 Virtual Technology for All Summit on June 17.

This free, online event will explore how people with disabilities and older adults are using technology to live more independently. Sessions include:

• Smart home tools and wearables
• Voice tech for people with speech disabilities
• Using AI and telehealth in daily life
• Tools for employment, safety, and connection

Keynote speaker: Dr. Shea Tanis, expert on enabling tech in all 50 states.
Date: June 17, 2025
Time: 9–11:30 a.m. CT / 10–12:30 p.m. ET

Click here to learn more about the Virtual Technology Summit.

Big News: More People Can Now Get Help Through ECF CHOICES

Starting July 1, 2,800 new spots will open in Tennessee’s Employment and Community First (ECF) CHOICES program. This program helps people with intellectual and developmental disabilities (IDD) live and work in their communities.

This is a rare opportunity.

Thanks to new funding proposed by the Governor and approved by the state legislature, the new slots will go to:

• 300 people in crisis, like those who are homeless, in the hospital, or in a place that isn’t safe.
• 2,500 people who are on the waiting list (also called the referral list) or new applicants who haven’t applied yet.

If this could help you or someone you care about, now is the time to take action:

• If you’ve never applied, go ahead and apply now.
  • This webpage explains how the program helps people and how you can apply on your own or get help from someone else to apply.
• If you’re already on the waiting list, your health plan—BlueCare, UnitedHealthcare, or Wellpoint—might contact you. They may ask if you need services right now. Even if you’re not sure what kind of help you need, you should say yes and take part in the planning process.

To help you think through what you want out of life and where you might need support, we recommend the LifeCourse Life Domain Vision tools. These are great prep for talking with your health plan about your goals and needs:

• LifeCourse Vision Tool – Person-Centered (PDF)
• LifeCourse Vision Tool – Family Perspective (PDF)

We don’t know when this kind of opportunity will come again. In the past, families have waited a long time for a slot in ECF CHOICES. This new funding will help a lot of people, and we want you to be able to take part.

Policy Corner: Council News to Know

Hi readers,

Have you read or heard concerns recently about possible cuts to Medicaid? I know it’s been hard for me to keep track of what is going on, what has happened already, and what has only been suggested as a possible outcome!

I want to give you a brief look at what we know right now, what we don’t yet know, and resources to learn more.

What we know:

• Last week, we saw for the first time a specific proposed bill passed by the U.S. House of Representatives committee (Energy and Commerce) that oversees funding for Medicaid. The bill is part of the president's tax cut package. It went on to pass the Budget Committee last night, in a rare Sunday vote. The draft bill makes changes to Medicaid and the Affordable Care Act.
  • Some proposed changes would only apply to states that expanded Medicaid to more low-income adults. Tennessee is NOT one of those states, so those changes would not affect Tennesseans. Other proposed changes would apply to some people in every state.
  • Some proposed changes would start right away. Others would not start for many years - as proposed now - and could be reversed in future sessions of Congress.
  • The bill is almost certain to change as it continues in the House and Senate. 
  • Some of the proposed changes to Medicaid in the current bill that could impact Tennesseans with disabilities include:
    • Adding work requirements for some “able-bodied” adults on Medicaid by 2029.
    • Making changes to how states review people’s eligibility for Medicaid.
• The Congressional Budget Office estimates that the changes proposed in the House’s current draft bill would cause 7.6 million people to lose health insurance by 2034.

What we don’t know yet:

• When or how the current draft bill will change as it is debated further in the House and Senate.
• Which people would be subject to new work requirements as laid out in the current draft. (Note: how / which people with disabilities are impacted by work requirements in Medicaid for “able-bodied” people is a complex topic with a lot of debate.)
• How exactly states would change the way they review people’s Medicaid eligibility, which is already a complex process for many people with disabilities to navigate.
• Whether or not states would choose to make changes to home- and community-based services if they got less federal funding for Medicaid.

Where you can learn more:

• How do Tennesseans with disabilities use Medicaid (called TennCare here in TN)? Check out - and share - our storytelling campaign on Facebook! It explains how Tennesseans of all walks of life use Medicaid funds not only for their healthcare, but also services in their homes, at work, and in their communities.
• Kaiser Family Foundation produces a lot of nonpartisan policy information about Medicaid. To learn more, check out:
  • What’s in the current bill and how does it compare to the law right now? –“Tracking the Medicaid Provisions in the 2025 Reconciliation Bill”
  • 5 Key Facts About Medicaid Work Requirements
  • State-Level Context for Federal Medicaid Cuts of $625 Billion and Enrollment Declines of 10.3 Million

It’s hard to tell yet exactly what this will mean for Tennesseans with disabilities. A lot of disability advocates are concerned. For now, we can reassure you that:

• No cuts have been made yet, so if you get TennCare, nothing should change for you right away. There are still many steps before an actual bill is passed.
• Telling your members of Congress how you and your loved ones use Medicaid is always valuable. We know that too many people don’t understand how it helps Tennesseans with disabilities. If you need help finding contact info for your Congressional reps, email me any time at Emma.Shouse@tn.gov!
  

Emma Garton

Public Policy Director

 Scholarship Fund Now Open for Applications

The Council’s Scholarship Fund is now accepting applications for the 2026 fiscal year (events taking place between July 1, 2025 and June 30, 2026).

This fund helps Tennesseans with disabilities and their families take part in important disability-related events—like conferences, trainings, and leadership meetings, here in Tennessee and across the country.

The Scholarship Fund can reimburse you for:

• registration fees
• travel and lodging
• meals
• child care or respite care
• attendant care
• other related expenses

This year, the Council is partnering with United Cerebral Palsy of Middle Tennessee (UCP) to manage the fund. Once you apply, UCP will contact you to process your request and handle reimbursements.

Learn more and apply here!

Medicaid Basics: How It All Works (And Why It Matters)

Medicaid is the biggest way people with disabilities get the services they need. However, it can be confusing.

Two new guides help explain how Medicaid is paid for and how the system got this way. They are called:

• “Why Did They Do It That Way? Home and Community-Based Services”
• “Why Did They Do It That Way? Medicaid Financing”

These guides answer big questions like:

• Why does each state run Medicaid its own way?
• Why are some services harder to get than others?
• Why does money matter so much in the way services are planned?

We’re sharing these because we want everyone—families, self-advocates, lawmakers, and organizations—to have the facts. When you understand how the system works, you can speak up and help make it better.

Understand Your TennCare Options: New Easy-to-Read Resources

TennCare has released two new plain language resources:

• “Losing TennCare?”
• “Turning 19: Health Care Changes”
  

These handouts explain what to do if you're about to lose TennCare, and what happens if you lose it. They tell you why it might happen, how to check if you can still get TennCare, and where to get help. They also show other programs you might qualify for.

The Council helped TennCare make these handouts. We often get questions about this, and we wanted to help make the answers easier to find and understand.

New Opportunities from EMPOWER VI

EMPOWER VI supports students who are blind or have low vision, along with the adults who support them. All programs are online and free to join and are a great option if you live in a rural area or don’t have access to in-person services.

Opportunities include:

• High school students can get support from a mentor with a visual impairment
• Join the Student Advisory Board to share your ideas and help guide the program
• Blind or low vision adults can become mentors and support students
• Families and professionals can join Communities of Practice to learn, connect, and share

The flyers below have more information. You can also scan the QR codes to learn more or sign up.

Sensory Kits Available for Law Enforcement

Family Voices of Tennessee is offering free sensory kits to local law enforcement agencies across the state.

These kits are designed to help officers better support people with sensory needs - especially people with autism and other developmental disabilities.  

Each kit may include things like:

• Noise-reducing headphones
• Fidget items
• Picture cards and visual supports
• Tools to help calm and communicate

This project is part of Family Voices’ work to improve understanding and safety during interactions between law enforcement and the disability community.

Want to help bring these kits to your local police department?
Family Voices is happy to share them - just reach out and ask! We’ll share a link in next month’s issue with full details on what’s included and how to request a kit.