July 2024

Monthly Council News - 2
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From Our Chief Strategy Officer

Dear readers,

Happy Disability Pride Month! If you missed it, I highly recommend the article Dirk Strider, our new Communications Coordinator, wrote about disability pride for TN Disability Pathfinder’s newsletter

Curious about the Disability Pride colors in our updated banner? Learn about the history of the Disability Pride flag here.

And now, I have a confession to make: I ignore surveys.

My inbox and text messages are full of requests for feedback from every organization I interact with. It’s overwhelming, so I ignore most of them! I suspect I’m not alone. In fact, there is a term for this: survey fatigue.

The thing is: We need your input!

I know, I know. I get it – so I’m going to make a case for why our Community Needs Assessment survey is worth your time.

  • Your responses will shape 5 years of disability work in Tennessee. In other words, we won’t ask you for this again until 2029!
  • The results will be used by 4 different disability organizations. (See the survey link for more details on who we all are.) This year is the first time TN’s Developmental Disabilities Network has done this “needs assessment” survey together. In fact, it’s the first time ANY DD Network in the country has done this together! Previously, each of our organizations asked you to fill out a separate survey
  • We use what you tell us. Research experts at the Vanderbilt Kennedy Center will help us understand what your answers say about top needs in Tennessee’s disability community. Then we’ll get to work on real solutions! Each of our 4 organizations will have a different role. But we’ll all be working together on the things you told us were most important.

Did I convince you? I hope so! We’re really looking forward to hearing from you. (We mean that – this is a big deal for us!)  We’d also love your help in sharing this survey with other people we need to hear from.

I’ll finish by saying THANK YOU. Our state’s Developmental Disabilities Network can do our work because of you. The stories you share with us, the advocacy and policy work you do, your passion and commitment – they matter. This Disability Pride Month, I am thankful to be in the work together with all of you.

Take care, everyone!

Jolene Sharp

Chief Strategy Officer

Fill out our Community Needs Assessment survey!

This survey is your chance to shape the future of disability services in Tennessee. We're especially eager to reach those who aren't typically in our orbit. Every response helps us better understand and address the needs of Tennesseans with disabilities.

The survey:

  • Takes about 15 minutes to complete.
  • Is open to adults with disabilities, those with loved ones who have disabilities, and professionals in the field. No formal disability diagnosis or current receipt of benefits is required to participate.
  • Runs through Aug. 31, 2024
  • Can be accessed via this link – we kindly request that you do not share this link on public social media, but you’re welcome to share it within your network.
Take the Survey Here!

34 years ago, on July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law!

For more information, ways to celebrate, and events dedicated to the anniversary, please check out this website created by the ADA National Network.

Meet our Summer Intern: Eshani Arumalla!

We're excited to introduce Eshani Arumalla, who is interning with the Council this summer. Eshani is a student at Vanderbilt University with a passion for disability advocacy, stemming from her experiences as a sibling of someone with autism. We asked Eshani a few questions to help you get to know her better.

Tell us about how you first got connected with the Council.

I approached one of my Vanderbilt professors about finding resources to expand two projects:

  • a sibling support group I led through Autism Tennessee and
  • my project to create sensory kits for hospitals.

My professor directed me to Council staff Emma Garton, who runs TN Adult Brothers and Sisters, and Jolene Sharp. Their quick, positive responses and recommendations helped me feel incredibly supported and motivated to continue my personal projects.

What made you interested in working here as an intern?

My brother's autism diagnosis over a decade ago made me extremely interested in learning more about autism. I wanted to find ways to combat the daily struggles. In college, I am involved in disability research, service, and advocacy but have never dabbled into policy.

I pursued an internship at the Council to interact with those involved in disability policy. I wanted to better understand policy management and how to effectively create long-lasting solutions.

Can you share one “ah-ha” moment or something that has surprised you in your time with us so far?

I recently attended the Tennessee Leaders of Tomorrow Luncheon with my supervisor, Cathlyn Smith. We heard Dr. William Arnold speak about Tennessee’s reentry efforts to help formerly incarcerated individuals smoothly transition into society. After his speech, Cathlyn asked him about their disability-specific efforts. I am used to being the one who has to do the disability probing. I was so happy to be surrounded by people who drive conversation and change for disabled populations.

How do you hope your time at the Council will inform your future career path?

Considering that all my efforts stem from my brother’s diagnosis, disability advocacy will always be close to my heart. I hope to become a physician who specializes in caring for and revolutionizing the healthcare experience for neurodivergent patients like my brother. Through this internship, I hope to expand my knowledge of policy implementation and government resources. I want to home in on the intersection between medicine and policy. I am especially excited to spread my passion for sensory inclusivity in clinical settings.

Share with readers how they can get in touch with you if they are interested in learning more about your hospital sensory kits project.

If you are interested in learning more about my hospital sensory kits, feel free to contact me at eshani.r.arumalla@vanderbilt.edu. I’d love to hear from you and answer any questions!

Eshani, who is a young woman, smiling at the camera. Eshani has long dark hair and brown skin. She is wearing a black top with a light pink cardigan and is holding what appears to be a notebook or folder. Eshani is standing in front of a brick building with large windows and black shutters, with a vibrant red Japanese maple tree in full foliage behind her.
Selfie of two smiling women in front of a brick university building. Left: older woman with short curly hair, glasses, wearing black top with TN flag pin. Right: younger woman with long dark hair, wearing light cardigan. Background shows colonial-style architecture and people walking.
Eshani and Council Director of Leadership Development Cathlyn Smith recently attended the Tennessee Leaders of Tomorrow Luncheon at the Governor’s Mansion.

Council Member Spotlight

Courtney Johnson

Council member and Partners in Policymaking® graduate Courtney Johnson has been nominated for a national self-advocacy award in recognition of her impactful work at the state legislature this year.

Courtney will be honored with other nominees from across the country at a special luncheon in Washington, D.C. The luncheon will be held during the National Association of Councils on Developmental Disabilities (NACDD) annual conference this month.

Chrissy Hood

Council member and Partners in Policymaking® graduate Chrissy Hood will present at The Arc's 2024 National Convention in Columbus, Ohio this fall! Chrissy will present alongside her daughter, Alaina. Their session is titled "Accessible Restrooms - Because Everyone Deserves Dignity."

This presentation aligns with Chrissy's ongoing advocacy work on increasing the number of adult-size changing tables in public restrooms. She will also be speaking on an advocacy panel at the national Phelan McDermid conference about the same topic.

Policy Corner: Council News to Know

Voting is one of the most important ways to influence public policy! From local races to presidential elections, weighing in on who you think our leaders should be is a right and a responsibility.

Election day for several races is Aug. 1. You can vote early now until July 27. Visit the TN Secretary of State’s hub of voter information to learn more. Our friends at Disability Rights TN have a very helpful “Voting Basics” resource page - check it out!

-Emma Garton, Policy Director

Feedback opportunities:

Deadline Aug. 9 - TennCare - “Medicaid Buy-In” Program Policy Proposal Public Comment

  • This is the notice from TennCare that creates the new program for working people with disabilities. We shared information about this during the most state legislation session (“Medicaid buy-in”). Read more in recent issues of our e-news here, including how our Council member Bliss Welch helped to pass the bill! The key thing to know now: there will be a new program starting January 1, 2025. The program is for Tennesseans with disabilities who:
    • do not qualify for Medicaid because of their finances
    • need services only offered by Medicaid
  • TennCare just released draft rules for the program. If you have ideas, questions, or concerns about the rules, send in comments no later than Aug. 9! If you need help understanding them, let us know at tnddc@tn.gov.

Deadline Aug. 12 - US Office of Management and Budget - Input Needed about Addition of “Care Workers” in Standard Occupational Classification (Administration for Community Living)

State policy news and events:

National headlines:

Federal policy updates and events*

(*Sources for federal legislation and events include policy newsletters from The Arc U.S., Association of University Centers on Disabilities, Family Voices, the Administration for Community Living and more)

Upcoming Events

Caregiving in Faith-Based Communities Symposium

An upcoming event focused on exploring how churches can better support caregivers and families with disabilities.

  • July 26, 2024, 12:00 to 2:00 p.m. at the Belmont United Methodist Church Community Center in Nashville, TN
  • The symposium will feature a panel of faith leaders from various churches.

The discussion will center on:

  • providing support to families with disabilities within congregations,
  • developing programs to serve caregivers in the community,
  • and building meaningful connections between churches and caregivers.

This event is sponsored by the West End Home Foundation. For more information, contact Breion Dixon, Outreach Program Manager, at outreach@tnrespite.org.

Become an IEP Advocate: Volunteer Advocacy Project Fall 2024

An intensive training program to prepare individuals as special education advocates for families of children with disabilities in Tennessee.

  • August 15 to November 7, 2024
  • Virtual sessions on Thursday evenings
  • 12-week program hosted by the Vanderbilt Kennedy Center

The training will focus on:

  • Understanding special education laws and policies
  • Developing advocacy skills
  • Supporting families through the IEP process

Key details:

  • Cost: $25 (need-based scholarships available through partnering disability organizations)
  • Application deadline: August 15, 2024
  • Apply at: https://redcap.link/VAP2024

For more information, visit this link or email VolAP@vanderbilt.edu.

Job Openings in the Disability Field

Tennessee Disability Coalition

WorkAbleTN Benefits Analyst - Tennessee Disability Coalition

Community Health Worker Part-Time Training Coordinator

PEARS Parent Guide

Council Meetings 2024

Council meetings are open to the public. If you would like to attend Council meetings, contact Assistant to the Executive Director Ashley (Edwards) Hill at ashley.edwards@tn.gov. You can also call our main office line at 615-532-6615.