March 2024
View the original campaign with photos.
From our Chief Strategy Officer
Happy Developmental Disabilities Awareness Month!
Have you been following along with #DDAM2024 on our Council Facebook feed? We’ve been sharing Tennessee and national resources to support belonging for people with developmental disabilities.
The need to belong is core to every human. We know that people with developmental disabilities often face extra barriers to belonging. Developmental Disabilities Awareness Month is a great time to revisit what it takes to belong and ask: How can I help create belonging for people with developmental disabilities in my community?
Many of you know that my daughter, Lina, has Down syndrome. My husband and I have spent hours this week supporting her in dress rehearsals for her elementary school’s production of Moana, Jr. The performances are this weekend, so it’s crunch time for 90-plus 4th and 5th graders.
Participation for Lina doesn’t look exactly like it does for her non-disabled castmates. It took several weeks of rehearsal before she joined her ensemble group on the stage. So far, she’s opted to let a buddy deliver her spoken line. She often shows she can pull things together at showtime. But even if she doesn’t say her line this weekend, she is part of something big. Her castmates know Lina. They flexibly adjust to accommodate her. They welcome and celebrate her participation.
Belonging doesn’t happen without the choice to include. It happens when people with and without disabilities live, work, and play together. By sharing our lives, we learn to value each other as vital parts of the whole.
This was the vision of the Developmental Disabilities Act, our Council’s guiding federal law. It created councils like ours in every state to:
“assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life.”
We’ve come a long way in Tennessee since the DD Act was first passed in 1970. But there is much more work to do. We speak daily with self-advocates and families who are struggling to find supports that meet their needs. This Developmental Disabilities Awareness Month, join us in recommitting to the work of true belonging for people with disabilities in Tennessee.
Jolene Sharp
Chief Strategy Officer
TN Council on Developmental Disabilities
Get to Know a Leader: Alison Gauld, TN Department of Education
We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.
Today, we're introducing you to Alison Gauld, Low Incidence and Autism Coordinator in the Special Populations Division of the TN Dept. of Education. Alison represents the Dept. of Education on our Council. She frequently supports our Governor-appointed Council members with solving issues related to special education in their communities.
Tell us a bit about your career background and your current role.
I am a special education teacher and taught in both Arizona and Colorado before coming to Tennessee. I taught for 20+ years, and all but 2.5 years have been in low incidence (CDC). (“Low incidence” is a general term used to describe disabilities that occur in low numbers, or are less common, within the general population. A few examples of low incidence disabilities include: intellectual disability, multiple disabilities or severe disabilities, orthopedic impairments (physical disabilities), visual impairments or blindness, and hearing impairments (hard-of-hearing) or deafness.)
In my current role, I work with educators, district and school leadership, families, policymakers, and agencies on behalf of students with disabilities.
What is one thing you’re working on right now that you are excited about?
I am fortunate to have a job where I get to work on behalf of student with complex needs. The Teaching All Students initiative is some of the most rewarding work I do. This project funded by a federal grant is a training for high school teams on how to increase inclusion and career outcomes for students with complex needs. The high school teams include a:
- school administrator,
- general education teacher,
- special education teacher, and
- district special education director.
The teams attend a week of training every summer and receive coaching throughout the year for three years.
But I am also excited to increase the time with teachers leading professional development. I have some ideas for new learning that will empower teachers to achieve the dreams they have for their students.
What is one of the biggest lessons you have learned from working with TN’s disability community?
Words matter. A single word can hurt, heal, or empower another person. We each have experiences that add meaning to the words and phrases used by others. There are also words that unintentionally limit or create barriers. For instance, I appreciate disability awareness campaigns, but I would welcome a disability empowerment movement. By changing “acceptance” and “campaign” to “empowerment” and “movement,” I changed the entire message and goal.
If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?
I would love to shift the lens we look through to one of hope and empowerment. Individuals with disabilities can absolutely, 100%, have a rich and meaningful life. But it requires all of us to believe in heart, mind, and action that every person is an essential part of our community and when a person is not an active member, all our lives are impacted by that loss.
What are some activities you enjoy doing in your free time?
I am an avid reader with a life-long passion for mysteries and novels. I also enjoy lifting weights, crafting, baking, trying new restaurants, or things that take me outdoors, like walking or running.
When should members of the disability community reach out to you or your team directly?
I am here to support all students and families, so you can reach out any time. If I am not the person that can help you, I will connect you to that person. Alison.Gauld@tn.gov, 615-854-9520.
Policy Corner: Council News to Know
Last month, I shared information about Disability Day on the Hill and a few bills that the Council is following.
Since then, it's been an action-packed month in the world of public policy. Here are some highlights - see related photos below!
- We presented about our work and budget for next year to the House Finance, Ways and Means committee. (View the March 4 hearing here and click on the "Council on Developmental Disabilities" hot link under the video. Or, go to timestamp 2 hours 10 mins. to watch our part.) We got great questions from the committee members about:
- our leadership academy for state employees leading disability programs,
- our Scholarship Fund that supports learning and training for TN's disability community, and
- the Employment Roundtable that promotes coordination among employment services for people with disabilities in TN who want to work.
- Our Chief Strategy Officer, Jolene Sharp, testified about the importance of inclusive community living for Tennesseans with intellectual and developmental disabilities this week. (Watch her portion at this link from time stamp 1 hour 19 mins.)
- During Disability Day on the Hill, two of our Governor-appointed members who are also graduates of our Partners in Policymaking program - Chrissy Hood and Molly Anderson - spoke on an advocacy panel organized by the TN Disability Coalition.
- Chrissy spoke with her daughter Alaina about their family's efforts to inform lawmakers about the need for more adult-sized changing tables. A lovely surprise that day was a ribbon cutting ceremony with the Hood family and legislative leaders for a new adult-size changing table in the legislative building, Cordell Hull. (There will eventually be a second one added too!)
- As a result of the Hood family's efforts (along with other disability advocates), there is now a grant program in the TN Dept. of Intellectual and Developmental Disabilities to give money to businesses and local governments to install these tables in public family restrooms. TN State Parks and TN Dept. of Transportation are also putting tables in parks and rest stops. A bill just passed a couple of weeks ago that expands the amount of grant funding to businesses up to $10,000 and makes sure the tables are ones that benefits the most families! Chrissy recently was award the Rural Health Association of TN's Advocate of the Year award and her representative Rep. Clay Doggett won their Legislator of the Year award for this wonderful work.
- Molly spoke about her efforts to increase access to 911 through texting. Texting 911 benefits people who are Deaf or hard of hearing and those who have speech disabilities (like Molly). It can also be critical for people experiencing domestic violence or other emergency situations where they need to reach first responders without attracting attention. Molly has worked with state legislators and other local policymakers on this issue for several years. It's expected to soon be available statewide.
- Chrissy spoke with her daughter Alaina about their family's efforts to inform lawmakers about the need for more adult-sized changing tables. A lovely surprise that day was a ribbon cutting ceremony with the Hood family and legislative leaders for a new adult-size changing table in the legislative building, Cordell Hull. (There will eventually be a second one added too!)
- Council member Bliss Welch has been informing legislators and speaking out in the media about how the "TennCare for Working Individuals with Disabilities" bill (also known as Medicaid buy-in) would impact people with disabilities like her. This bill would create an option for people with disabilities who do not financially qualify for Medicaid to pay monthly for access to services ONLY offered by Medicaid - services they cannot get under their employer-sponsored health insurance.
- Council member Courtney Johnson (with the support of her fellow Partners grads Chrissy Hood and Michelle Gross) advocated about two important issues to Rep. Alexander during Disability Day on the Hill:
- Adding an amendment to a bill about banning electronic devices in schools. The amendment created an exception for students with disabilities who use devices for assistive technology or communication. (This bill ultimately failed in the House education committee this week.)
- A resolution honoring Disability Day of Mourning in TN and Tennesseans with disabilities who were murdered by caregivers or family members (called "filicide"). House Joint Resolution 1048 was passed by the House this week and will be read in the Senate next week. Courtney leads a vigil for Disability Day of Mourning on March 1 of each year. You can learn more about this topic at Disability-Memorial.org or from the Autistic Self Advocacy Network.
Every year during legislative session, I am humbled and impressed by our Council members, Partners grads, and other disability advocates who may feel uncertain or nervous about speaking to their legislators but show up anyway - or write letters or make phone calls anyway. They tell their stories. They talk about what issues are important to them. They express concerns about bills that they worry will have a negative impact on their families' lives. They ask uncomfortable questions to people in power. They engage in hard conversations and share creative ideas and are okay with saying "I don't know the answer to that question, but I can find out!"
It's not too late to reach out this legislative session to tell your elected representatives about any concerns or ideas you have. Find their contact information here.
Let us know at tnddc@tn.gov what bills or issues are on your mind.
Emma Garton,
Policy DirectorThey get involved, even when it is not comfortable or easy, and I am so grateful
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Feedback opportunities
- Section 504 Experience Survey - Dr. Meghan Burke (a TN Partners in Policymaking graduate, Vanderbilt University special education professor, and board member for The Arc US) is working on a research project related to students who are on 504 plans in school. She and other researchers at Vanderbilt are recruiting eligible individuals to complete a survey on this topic. They are looking for students with disabilities and/or their families to share their experiences with Section 504 in schools. If you are interested in being interviewed about your experiences, fill out this consent form.
- April 12 deadline for comments - Read the new TN Statewide Plan for Independent Living, released by the Statewide Independent Living Council of TN (SILC). Click here to comment on the plan or email silcinfo@silctn.org.
- April 22 deadline for comments - TN Department of Intellectual and Developmental Disabilities' federal application to receive funding through Part C of the Individuals with Disabilities Education Act (IDEA) for Tennessee Early Intervention System. Fill out this form to share your comments or email comments to shannon.pargin@tn.gov.
- May 13 deadline for comments - U.S. Department of Transportation (DOT) released possible new rules that would make sure wheelchair users are safe when travelling on airplanes. Read and submit comments here.
State policy news and events
- The State of Private Schools in Tennessee (The Sycamore Institute)
- The Budget in Brief: Summary of Gov. Lee’s FY 2025 Recommended Budget (The Sycamore Institute)
- Child Mental Health Programs and Services in Tennessee (The Sycamore Institute)
- TN Comptroller Audit of Katie Beckett program (no findings)
- Bipartisan Bill Would Heighten Income Threshold for Tennesseans With Disabilities (Nashville Scene)
- Working Tennesseans with disabilities fight to qualify for TennCare (WSMV)
- Sen. Bo Watson sponsoring bill for working Tennesseans with disabilities to buy into Medicaid (Chattanooga Times Free Press)
Federal policy news and events*
- Bills related to disability in the current Congress - *ongoing list updated every month*
- New resource hub from Office of Disability Employment Policy: Supporting Transformative Change in Competitive Integrated Employment (CIE) Opportunities for People with Disabilities
- In honor of Women's History month, from Office of Disability Employment Policy: They Persevered: Honoring Three Georgia Women Behind the Landmark Olmstead Decision
- Biden Administration Releases Fiscal Year 2025 Budget - Analysis of proposed cuts to disability-related discretionary programs from The Arc US
- New executive director of the National Association of Councils on Developmental Disabilities will be Jill Jacobs, current Commissioner of the Administration on Disabilities under the US Administration for Community Living (ACL)
- April 3 - Taking the Mystery out of Medicaid webinar hosted by National Association of Councils on Developmental Disabilities and National Council on Independent Living
- April 8-10 National Disability Policy Seminar - Washington, D.C.
(*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)