April 2024
Click here to see the original campaign with photos.
From the Chief Strategy Officer
Dear readers,
Our staff is in high celebration mode! Today, we’re launching the open application window for our 2024-25 Partners in Policymaking® class. (It feels like confetti should fall from the ceiling as I type that sentence!) See below for details and how to apply.
Next week, we’ll be gathering in person with our Partners alumni network for the first time since before COVID. We’ll be celebrating 30 years of the program (read our special issue of our Breaking Ground magazine about that milestone) and looking to the future.
Partners in Policymaking is a powerful way for members of the disability community to:
- come together,
- build their leadership skills and knowledge,
- and join a powerful network that is helping to shape the future for people with disabilities in Tennessee.
The Partners network includes hundreds of people of all different backgrounds and experiences. This diversity helps us find solutions and policy ideas that work for more people. Sometimes, finding those solutions is a messy process! But it’s a cliché for a reason: we really are stronger together. Our Partners network is a powerful example of this truth.
In addition to these big Partners milestones, we’re also gathering for a quarterly Council meeting with our Governor-appointed and agency members tomorrow. It’s always a high point as we gather with the citizens who guide our work for change. (Not to brag – okay, maybe a little – but visitors who attend our meetings regularly tell us how impressed they are. These are not your average state government meetings. Want to see what we mean? Council meetings are open to the public – see our schedule for the rest of this year and plan ahead to attend!)
And when you’re done reading this newsletter, take a minute to enjoy the beautiful Tennessee spring outside!
Jolene Sharp
Chief Strategy Officer
TN Council on Developmental Disabilities
NOW OPEN: Accepting Applications for 2024-25 Partners in Policymaking Class!
Partners in Policymaking® is a FREE leadership and advocacy training program from the TN Council on Developmental Disabilities.
Over the course of 8 months, Partners scholars will learn skills and resources to answer:
- What does a good life look like for me, my family, and other people with developmental disabilities?
- What is needed for that vision to come true?
- How can I help make change toward that vision?
Get more details, including the 2024-25 class schedule, and apply on our website. We will accept applications through May 20.
Get to Know a Leader: Sydney Clark, TN Department of Health
We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.
Today, we're introducing you to Sydney Clark, Maternal & Child Health Emergency Preparedness and Response Coordinator with the Division of Family Health and Wellness in the TN Department of Health. Sydney is shown to the right with her service dog Jano during a recent trip to Scotland!
Tell us a bit about your career background and your current role.
I currently work as the maternal and child health emergency preparedness and response coordinator for the Department of Health. Prior to this, I worked as the disability and preparedness specialist for the State of Tennessee.
In my current role, I work to increase inclusion in emergency preparedness processes for women, mothers, infants, children, and youth with special healthcare needs. I did something similar in my previous position for the broad population of people with disabilities. I’m super passionate about increasing integration of populations with access and functional needs in emergency preparedness.
What is one thing you’re working on right now that you are excited about?
A project we are working on right now that I’m excited about is a "table top in a box" project. These are ready-made scenarios that different professionals can use to sit down and discuss emergency preparedness. (For example, professionals working in emergency management, public health, or healthcare facilities might use these kits).
This project is specific to access and functional needs, like
- people who have low vision/are blind
- people who are Deaf or hard of hearing
- people with autism spectrum disorder; and
- older adults
... who may have specific considerations that need to be planned for.
What is one of the biggest lessons you have learned from working with TN’s disability community?
Making sure you create strong relationships and have conversations with the people that you are trying to help is extremely important. I know that I don’t know best how to help every single individual at all times, so having these conversations and creating trust is extremely important.
A key takeaway for sure has been: it’s not an assumption to be made, but a conversation to be had.
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?
Educating/making sure everyone is on the same page. We have so many people with such good intentions, but without people being informed and on the same page, we aren’t able to do as much. It makes things a little bit challenging in certain situations.
What are some activities you enjoy doing in your free time?
In my free time, I love to travel, read, do yoga, and I have recently gotten into pottery.
When should members of the disability community reach out to you or your team directly?
Reach out to me when you have questions about how to best to equip your community for emergency preparedness: sydney.l.clark@tn.gov .
Disability Policy Corner: Council News to Know (April 2024)
We are down to the final days of the state legislative session. What a whirlwind it has been!
We hear the legislature is likely to wrap up next week. The House and Senate passed the budget bill just today (Tennessean: Tennessee lawmakers pass state budget with $1B for two key bills yet to win approval).
I want to highlight 2 big updates since our last e-news came out. (Read our Jan., Feb. and March editions for more info and stories about some bills we followed and worked on during this legislative session.)
- Medicaid buy-in bill (“TennCare for Working Individuals with Disabilities Act” - SB2791 / HB2940) – This bill creates 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 other kinds of health insurance. It still must officially pass the House and Senate during next week’s floor sessions, but we expect it to do so! We believe it will have a positive impact for many Tennesseans with developmental disabilities. Right now, without a Medicaid buy-in option (we are one of only a few states without one), many Tennesseans with disabilities are faced with extremely tough options like being unemployed or spending all their savings to afford care they cannot live without ... or going into poverty to become eligible for Medicaid. You can read a letter we sent about the bill here and see a news article featuring Council member Bliss Welch here.
- The bill creating the new TN Department of Disability and Aging was signed by the Governor last week – Read the press release from the Governor’s office here. This is a big deal! This change means opportunities to align the state’s policy efforts across the lifespan (housing, transportation, workforce, support for caregivers, information & referral) for aging Tennesseans and those with disabilities. Plus, it is combining resources previously in two different agencies into a single cabinet-level department. The biggest challenge we expect is maintaining expertise and focus on subgroups in the future, especially Tennesseans with intellectual and developmental disabilities.
These two bills are excellent examples of how the Council works on policy all year long.
Advocates have been meeting and providing input about these two issues for months. After countless committee hearings, fiscal note revisions, amendments and edits, legislative meetings, and other efforts … the passing of these bills is really just the beginning of change. Passing a bill in some ways is step 1! Now the rubber meets the road, so to speak. The Council will be “at the table” for the next steps: figuring out what it looks like to put policy into practice to change people’s lives for the better.
We want you to come along with us. Tell us your ideas, concerns, questions, experiences – we learn from all of it and take those thoughts and stories into our work daily. Email us anytime at tnddc@tn.gov.
Emma Garton,
Policy Director
Feedback opportunities
- One of our Partners graduates Lacey Lyons is working with the TN Health Care Campaign on finding feedback and stories about 2 topics from the disability community. Click the links below to find out more.
- No Surprises medical billing act - for those who have stories about getting medical bills that are much higher than expected
- Improving rural health and rural hospitals - for those interested in access to healthcare in rural TN communities
- April 23 - Listening Session on FEMA Individual Assistance Program Reforms
- 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.
- May 28 deadline for comments - FDA Proposes New Ban of Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior
- From Autistic Self Advocacy Network - Plain Language Public Comment Guide: #StopTheShock - What is it, and how can you help? (2024)
State policy news and events
- Paying Family Caregivers through Medicaid Structured Family Caregiving and Paying Family Caregivers is a Racial Equity Issue (TN Justice Center blog)
- New website: Direct Support Professionals (and Paid Caregivers) Tennessee (TN Dept. of Intellectual and Developmental Disabilities' policy and planning council groups)
National news
- For patients with disabilities, this doctor prioritizes independence — and fun (NPR)
- Tennessee Is Ramping Up Penalties for Student Threats. Research Shows That’s Not the Best Way to Keep Schools Safe. (ProPublica)
- Impact: New Issue, New Podcast on Disability Rights, Disability Justice (Institute on Community Integration)
- What Are Developmental Disabilities Councils? (Episode of ADALive!, produced by the Southeast ADA Center)
- How flawed IQ tests prevent kids from getting help in school (The Hechinger Report)
- Students with disabilities often snared by subjective discipline rules (The Hechinger Report)
- A Conversation About ABLE Accounts With Jody Ellis, Director, ABLE National Resource Center (Administration for Community Living)
Federal policy updates and events*
- Bills related to disability in the current Congress - *ongoing list updated every month*
- April 23 - American Association of People with Disabilities National Community Event
- April 24 - Administration for Community Living webinar: Finding One’s Advocacy Community: Stories & Insights from the Disability Community
- April 25 - Administration for Community Living webinar: Addressing the Shortage: The Current State of the Direct Care Workforce
- April 25 - National Association for Councils on Developmental Disabilities and FEMA: Bridging the Gaps Between Aging and Disability Networks to Prepare for Disaster
- U.S. Department of Education’s Office for Civil Rights Releases New Resources on Students with Disabilities | U.S. Department of Education
- May 6-8 - 2024 Virtual National ADA Symposium
- NEW RESOURCE: The Link Center - Bridging the Intellectual/Developmental Disabilities and Mental Health Systems (Administration for Community Living)
- Recent updates from Social Security Administration:
- Social Security Announces Four Key Updates to Address Improper Payments
- Social Security to Remove Barriers to Accessing SSI Payments
- Social Security to Expand SSI Rental Subsidy Policy – Agency Continues to Remove Barriers to Accessing SSI Payments
- Social Security Eliminates Overpayment Burden for Social Security Beneficiaries – Automatic Overpayment Recovery Rate Reduced to 10 Percent
- New rule: Streamlining the Medicaid, Children's Health Insurance Program, and Basic Health Program Application, Eligibility Determination, Enrollment, and Renewal Processes (Centers for Medicare and Medicaid Services)
(*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)