November 2024
From Our Chief Strategy Officer
Dear readers,
Happy Thanksgiving season! Our staff will be taking time away from work in the coming days to gather with loved ones. We hope you will be, as well.
With our late Tennessee fall this year, several trees in my neighborhood are just now putting on their finest show of color.
One in particular – a large maple on the corner of our street – has turned shades of fiery red and purple. I stopped in my tracks on a morning run recently when the sun burst from behind a cloud and set that tree fully ablaze.My kids are entering their teen years now. When they were little, older people commented constantly about how fast time would pass. I see now what they meant. Years seem to vanish in the churn of daily life. In fact, the pace sometimes feels downright frantic. Add to that the constant noise coming at us all – especially online, where algorithms steer us to voices of anger and fear. Those of us who experience disability often face extra layers of challenge in our daily lives. The exhaustion and overwhelm are real.
I don’t have easy answers. But I am learning that peace and rest come more easily for me when I choose to unplug and look for the beauty in the world around me. It’s that fiery tree in my neighborhood and the clouds scuttling across a brilliant sky on a windy day. It’s the sometimes funny and quirky, sometimes thoughtful conversations with my kids on the drive to school. It’s the feel of my dog’s fur under my fingers as she nudges me for more pets. It’s a moment of kindness shared with a stranger at the grocery store. It’s a meaningful conversation with a neighbor unexpectedly met at the end of her driveway. It’s a Saturday night board game with the whole family. It’s the steam and smell of a great cup of coffee in the early morning.
None of those things solve the challenges of daily life. They don’t calm chaotic current events or erase concerns for loved ones. But they help me tune into the joy and beauty that is right here, all around me, even in the midst of struggle. I can’t slow down the world or the inches my kids are adding to their height – but I can slow myself down to catch as much of this precious time as I can.
This Thanksgiving, I hope you are able to tune in to your own moments of joy and beauty. And I hope you find there many reasons to give thanks with a full heart.
Take care, everyone!
- Jolene Sharp
Welcome Blake Shearer: Our New Director of Leadership Development!
We are thrilled to announce Blake Shearer as our Council's new Director of Leadership Development! In this role, Blake will lead Partners in Policymaking, the Leadership Academy of Excellence in Disability Services, and other leadership development programs. Blake comes to us with long experience in education and employment supports for people with intellectual and developmental disabilities.
"I want to be known for my commitment to collaboration and capacity-building," says Blake. "Each day, I aim to build community through shared connections, foster inclusivity in all aspects of life, and elevate the people I encounter."
Blake joins us after serving as Transition Director for Tennessee's Vocational Rehabilitation program, where he oversaw Pre-Employment Transition Services, Transition School to Work programs, and Tennessee's Project SEARCH programs. His background includes leading Support Services for Student Readiness at the Tennessee Department of Education and a decade of experience in the Putnam County School System.
Blake holds degrees from Tennessee Technological University in child development, special education, and instructional leadership.
Blake lives in Cookeville with his wife and two children. Please join us in giving Blake a warm welcome to the Council team!
Apply Now: Kennedy Foundation Public Policy Fellowship
Want to help create disability policy at the federal level? The Joseph P. Kennedy Jr. Foundation is accepting applications for their 2025 Public Policy Fellowship in Washington, D.C.
This one-year fellowship places participants in Congressional offices for hands-on experience developing federal disability policy. The program provides both a stipend and relocation assistance.
Who Should Apply:
- People with disabilities
- Family members of people with intellectual/developmental disabilities
- Professionals working in disability services, advocacy, research, or leadership
The ideal candidate will have strong experience in disability advocacy and a passion for creating systemic change through policy.
Ready to apply? Submit your application at: https://forms.gle/sdtp3sFXznbWXbMk9
Questions? Contact:
- Kim Knackstedt (knackstedt@unlockaccess.org) for accommodation requests
- Steven Eidelman (Eidelman@jpkf.org) for general inquiries
January 15 Deadline: Submit Your Work for Breaking Ground Arts Issue
Breaking Ground magazine is seeking submissions from Tennessee artists with disabilities for our 2025 arts issue.
Our magazine reaches 6,000 readers statewide and celebrates the diverse creativity and artistic expression of our disability community.
We welcome submissions in all artistic mediums:
- Visual art and photography
- Poetry, creative essays, and stories (up to 800 words)
- Crafts and other artistic works
- Photos or videos of performance art (theatre, music, dance)
All submissions must be original works created by the artist. You may submit up to three pieces of visual artwork. Organizations submitting on behalf of multiple artists should complete separate forms for each artist.
Submit your work by January 15 using this form.
The Council is committed to featuring artists from all backgrounds, disabilities, and life experiences. Please share this opportunity within your networks.
Contact Chief Strategy Officer Jolene Sharp (jolene.sharp@tn.gov) if you:
- Need assistance with the submission form
- Have ideas for articles to include in the arts issue
- Have questions about submitting work on behalf of multiple artists
View our 2023 arts issue, including videos from featured artists here.
Improve School-Home Communication for Students with Autism: Research Study Opportunity
Are you looking for ways to strengthen communication between home and school for your child with autism? Vanderbilt University researchers are seeking participants for a promising new study.
The School-Home Alliance for Relationship Enhancement (SHARE) program aims to improve partnerships between families and educators of students with autism ages 3-21. Both parents and teachers are encouraged to participate together.
What's involved:
- Virtual learning sessions with role-playing and discussions
- Development of a communication action plan
- Brief surveys
- Total time commitment: About 4 hours over 6 weeks
This research will help test if the SHARE program effectively improves school-home communication for students with autism. Your participation could help advance understanding of best practices for supporting students with autism.
Interested? Click the link here to learn more and how to participate.
Contact the research team if you have any questions.
- Phone: (615) 933-3595
- Email: sharestudyvu@gmail.com
Council Member and Partners in Policymaking Spotlight
Council Member Spotlight: Advocating for Phelan-McDermid Syndrome Awareness
Council member Chrissy Hood and her daughter Alaina were recently honored when State Representative Clay Doggett presented them with a proclamation recognizing Phelan-McDermid Syndrome (PMS) Awareness Day in Tennessee on October 22. PMS is a rare genetic condition affecting about 1 in 10,000 births worldwide, caused by changes in chromosome 22 that impact brain development and functioning.
For the Hood family of Pulaski, getting Alaina's PMS diagnosis helped explain many of her medical conditions, including autism, cerebral palsy, and epilepsy. Though Alaina is non-speaking, "she has the biggest and brightest smile and loves watching people," Chrissy shares. "She has taught us to enjoy and celebrate the little things."
Currently, there are no treatments or cures for PMS. The Hoods are passionate about raising awareness to improve support services, increase research funding, and inform policy decisions that affect people with PMS. To learn more, visit pmsf.org.
Council Alumni Spotlight: Clancey Hopper
Former Council member and Partners in Policymaking graduate Clancey Hopper served as emcee for Disability Rights Tennessee's annual Disability Employment Awareness Luncheon in October.
She currently serves on the Board of Trustees for the Williams Syndrome Association. Her career path includes being a graduate of Project SEARCH at Vanderbilt University Medical Center and spending four and a half years as a tour guide at the Grand Ole Opry – a role she describes as her favorite job ever.
Many in our community know Clancey from her eight years of service as a Governor-appointed member of our Council and her graduation from Partners in Policymaking in 2017.
Partners Scholar Spotlight: Inclusive Change at Local YMCA
Current Partners in Policymaking® scholar Maribeth Watson recently turned learning into action by advocating for adult-sized changing tables at her local YMCA. After discussing accessibility needs with YMCA staff during their renovation planning, Watson's advocacy helped convince the board to include two changing tables in their construction plans.
Inspired by fellow advocate Chrissy Hood and her Partners in Policymaking training, Watson's successful effort shows how a conversation can lead to meaningful change in our communities.
This improvement will help make the YMCA more welcoming and accessible for all families, including Watson's teenage daughter and others who need these facilities.
Want to advocate for adult changing tables in your community? Visit our resource page to learn more about the need for these facilities and how you can help make spaces more accessible for everyone.
Call for Presenters: 2025 Disability MegaConference
The state's largest disability conference will return May 22-23, 2025, at the Loews Vanderbilt Hotel in Nashville! This year's theme is "Past Reflections, Future Directions," featuring a keynote on disability history and breakout sessions focused on moving forward.
Want to present? Submit your proposal by November 30, 2024. Sessions should align with one of these life domains:
- Daily Life & Employment
- Community Living
- Healthy Living
- Safety & Security
- Social & Spirituality
- Advocacy & Engagement
Presenters will receive discounted conference registration. Proposals must include a clear description, learning objectives, and intended audience. The Program Committee will notify chosen presenters by early January 2025.
Need help submitting? Email Wil Herrmuth at wherrmuth@thearctn.org. The conference encourages proposals from presenters of all abilities and can provide assistance with the submission process. More information for attendees soon.
Social Security Enhances National 800 Number Service
The Social Security Administration is working to improve customer service through its national 800 number. Recent updates aim to reduce wait times and provide more convenient support for millions of Americans.
Some of the improvements made so far include:
- Wait times have been cut nearly in half, from 24 to 13 minutes.
- Their new Call Back Assist feature allows you to keep your place in line without staying on hold.
- Interpreter services are now available in over 200 languages.
The Social Security Administration's goal is to reduce average wait times to 12 minutes by the end of fiscal year 2025
Read the full article on the Social Security Administration blog
Policy Corner: Council News to Know
Each fall, the state agencies in the Governor’s cabinet present their funding requests for the next year to the Governor in a public hearing.
These budget hearings can be an interesting way to:
- Learn about work done by agencies during the last year
- See what programs and services state agencies want to fund and focus on next year
- Hear what is on the Governor’s mind based on questions he asks the agency leaders
Here is a link to all the videos of the recorded budget hearings held over the last couple weeks.
Agencies asked the Governor for money to pay for their programs and services between July 1, 2025 and June 30, 2026.
We will learn if the Governor agreed to fund those requests in his budget proposal released in February during the “Governor’s State of the State” address. Then the state legislators vote on that budget proposal before they adjourn in the spring.
Often, most items that make it into the Governor’s budget proposal are funded without controversy or question from state lawmakers. If items are included in the Governor’s budget, it shows that he agreed with state agencies that they were critical needs for Tennesseans.
A few budget proposals that I wanted to highlight for you:
(TennCare) Expanding the Employment and Community First (ECF) CHOICES program for Tennesseans with intellectual and developmental disabilities
TennCare asked for funding for 300 new spots in the ECF CHOICES program to serve people in crisis. It also asked for funding for 2,500 other spots for people on the waiting list for services. This would mean, if it gets funded like TennCare asked, everyone currently on the waiting list of about 1,500 people could start getting ECF services, plus about 1,000 more people.
(Dept. of Disability and Aging) Hiring nearly 100 new workers to coordinate care for kids with intellectual and developmental disabilities in DCS/state custody
DDA asked for funding for new staff to make sure kids in state custody with disabilities have the services and supports they need. Improving coordination between different agencies that serve these kids has been a priority for our Council over the past year.
(TennCare/Disability and Aging) Continued increases for disability support staff/provider wages.
(Disability and Aging) New funding for providing housing help (examples: home modifications, down payment money) to people with disabilities and older adults and new grants to build inclusive playgrounds.
(Mental Health) More funding for school-based behavioral health liaisons and IPS (Individual Placement and Support) employment services for Tennesseans with mental health disorders.
Want to learn more? Watch the hearings for agencies you are interested in (all are about half an hour) or download the PowerPoint slides linked below the hearing, which tells you how much funding is being requested. There may not be more details available yet for a lot of these ideas though.
We will keep you posted about budget proposals that impact Tennesseans with disabilities! If you have any questions, let me know at emma.shouse@tn.gov.
-Emma Garton
Public Policy Director
Share Policy Input:
Due 12/2 - A Joint Commitment and a Call to Support Children in Foster Care – “If you or someone you know has lived experience in the child welfare system, or an interest in improving the lives of children in foster care, we want to hear from you. The Social Security Administration is seeking input from people with insights to share about how Social Security and Health and Human Services might work together to better improve outcomes for children in foster care.”
National survey for people who get home- and community-based services (Rehabilitation Research and Training Center on Home and Community-Based Services)
State News and Events:
Chalkbeat - Tennessee’s new universal school voucher plan has GOP leaders on the same page
ProPublica - Under Tennessee's School Threat Law, Kids Are Arrested for Rumors and Jokes (series profiling a few local students with disabilities)
1/16/25 Transition TN webinar - Using an Exit Meeting to Plan for Services After High School
Save the dates! Disability Day on the Hill 2025, hosted by the Tennessee Disability Coalition (registration info coming in early 2025)
Virtual Events:
Legislative Webinar - 2/27, 1-2pm CT and 5:30-6:30pm CT
Disability Advocacy Day - 3/11
In-Person Events:
TDC Community Party - 3/11, 5-7pm CT (location TBA)\\
Disability Day on the Hill - 3/12, 9am-2pm CT (Cordell Hull)
Questions about DDH 2025 dates? Call 615-383-9442 or email: ddh@tndisability.org
National News:
Chalkbeat - Would axing the Education Department hurt kids with disabilities? Experts say: It depends
Federal Policy News and Events:
- 12/9 - Specialized Support for People With I/DD and Dementia
- 12/12 - Addressing Behavioral Health Crisis in Aging Adults: Reducing Stigma and Enhancing Care
- 12/17 - The New Medicaid Access Rule: Primer and Advocacy Strategies
- List of federal legislation we are watching
(*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)
Job Openings in the Disability Field
Burton Blatt Institute
- Syracuse University's Burton Blatt Institute is hiring a Distance Learning Coordinator to support the Southeast ADA Center, coordinating training activities, managing podcast logistics, and providing technical assistance on disability rights and accessibility, with a preference for candidates from AL, FL, GA, KY, MS, NC, SC, or TN.
Family Voices of Tennessee
- Family Voices of Tennessee is hiring a Peer Support Coordinator to support families of children with disabilities.
Council Meetings 2025
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.