July 2023

Click here to see the original email.

From the Council's Chief Public Information Officer

Dear readers,

Councils on Developmental Disabilities in every U.S. state and territory have been working for 50 years for greater inclusion, independence, and self-determination for people with developmental disabilities. But what does that really mean?

Today, we’re introducing a new video. (View at that link or see the embedded video at the end of this note.)

“What developmental disabilities have in common is the need for lifelong support with activities of daily living… But developmental disabilities is so much more than a definition. It’s about supporting people to live the life they deserve.”  -Lauren Pearcy, Council Executive Director

In less than 2 minutes, you’ll get a glimpse into the developmental disabilities community in Tennessee through members of our Council, who share how they get support to live a good life.

Our website offers more detail about developmental disabilities.

A few highlights:

  • About 2.3% of the U.S. population has a developmental disability.
  • This means about 160,000 Tennesseans have a developmental disability.
  • The impact includes thousands more through family members, friends, and colleagues.
  • About 7% of people with developmental disabilities get paid services for long-term help with daily needs. (In Tennessee, that includes programs like Katie Beckett or Employment and Community First CHOICES.)
  • This means that about 93% of people with developmental disabilities in Tennessee are getting any regular help they have from unpaid supporters, such as parents, grandparents, siblings, spouses, or other friends or family.

The U.S Centers for Disease Control and Prevention (CDC) recently announced that the current rate of developmental disabilities in children is 1 in 6, or about 17%. This tells us that the developmental disabilities community is growing. These children need us to build a system of supports that will be ready to help them transition to adulthood and live good lives in their communities.

This need couldn’t mean more to me personally. Both my children are included in those CDC numbers. My son is about to begin his 8th grade year of school, and my daughter will begin her 5th grade year. Both kids will be making big transitions next year: one to high school, one to middle school. My husband and I will do the hard work of making sure they have access to the environments and supports they need to learn and grow. And we will begin to think further ahead, to the transition from school to adulthood.

Will the world be ready to welcome our kids and recognize all they have to offer? Will they have the chance to pursue their passions, contribute to their communities, and build financial independence? Will they have meaningful relationships that offer vital connection and belonging? All across our state and nation, parents like us are asking these same questions.

Councils on Developmental Disabilities exist to reach ALL people in the developmental disabilities community with information, resources, and support. We are the only government entity that works across the entire disability system to help it work better and reach more people. We build partnerships across government and private organizations so we can all work together toward common goals. The urgency of that work has never been clearer.

If you want to get involved or learn more about our work, please reach out: TNDDC@tn.gov.

Stay well, everyone!

Jolene Sharp
Chief Public Information Officer

2 Brief Surveys from Us

Have you noticed a lot of surveys lately? We have, too!

There are several reasons for this. One is that the state fiscal year ended on June 30. That means that disability agencies (like ours) that get state funding are working on year-end reporting. That often involves asking you how we’re doing with our work.

We and our partner organizations know you probably get tired of being asked for feedback. Filling out surveys can start to feel like an unpaid job!

So (you knew this was coming): we have a couple surveys below that we hope you’ll fill out! Here’s the best case we can make for why these are worth your time:

  • We made them as brief as we could – they should take less than 10 minutes total.
  • They offer a way for you to have a voice in our work. We really do listen and respond to your ideas and concerns.
  • They offer a way to show the government agencies who fund us how well we’re using those resources. For example:
    • Are we giving you information you need and can use?
    • How well are we reaching people who face extra barriers to information and services?

We could offer more reasons, but this is all about respecting your time! So, we’ll just say: thank you for reading and for sharing your feedback. It truly matters to us.

Get to Know a Leader: Emily Duchac, Office of Mobility and Accessible Transportation

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Meet Emily Duchac, the Mobility and Accessible Transportation Supervisor for the Office of Mobility and Accessible Transportation. This fairly new office is a part of the TN Department of Transportation (TDOT).

Tell us a bit about your career background and your current role.

Emily: I started my career at TDOT in the Office of Public Transportation, where I administered different transportation grant programs, including the Section 5310: Enhanced Mobility of Seniors and Individuals with Disabilities program.  Now, I supervise the Office of Mobility and Accessible Transportation. 

My experience working with public transit agencies and the specialized disability and aging service providers in the 5310 program informs the job I do now, working to expand and improve accessible transportation and mobility across Tennessee.  I know how important it is that people have access to transportation, so they can be included in their communities and get where they need and want to go. 
 
What is one thing you’re working on right now that you are excited about?

The Office of Mobility and Accessible Transportation was created in 2020, and we first had to create a mission and a strategic plan to guide our work. Now that the initial planning is over, I’m excited to really dive into the priorities and goals we identified during the planning process.
 
One project that I’m excited about is the “HOPE” Job Access planning project. During our planning process, we heard from a lot of people, especially people with disabilities, who said that transportation to work was one of their biggest challenges. So, this project is focused on employment transportation, including rides to work, job training and job-related childcare. We just finished the public engagement process, and now we are taking that feedback and using it to develop a model for a potential Job Access program. To learn more about the Job Access Plan, you can visit the project website at https://tnjobaccessplan.com/.  
 
What is one of the biggest lessons you have learned from working with TN’s disability community?

The biggest lesson I have learned is that having choices and options is the most important part of mobility. One of our office’s goals is to support a transportation system that’s accessible to everyone, but “accessible transportation” can mean different things to different people. Just as an example, for some people, accessible transportation means a vehicle with a wheelchair lift that comes directly to their house. For other people, accessible transportation means a well-maintained sidewalk and crosswalk so they can travel independently. When only one option is available, it might not work for everyone. So, it’s important to have transportation options available that meet a spectrum of different needs.
 
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?

If I could wave a magic wand to remove a barrier, I would make it easy for people to navigate the existing transportation system. Sometimes, even when there is transportation available at the right time and in the right place, people can’t find it or don’t know how to use it. Fortunately there are some great resources to help people find and use transportation. 

One thing you can do if you need help finding accessible transportation (and other services!) in your area is contact Tennessee Disability Pathfinder.  Many local public transportation providers also provide free travel training to help people learn to use the system independently.  
 
What are some activities you enjoy doing in your free time?

I like to hang out with my family and friends and find new places to eat brunch or try new food. I also really enjoy reading books and watching movies, and I’m always finding new favorites.  I like action movies and musicals the most!
 
When should members of the disability community reach out to you or your team directly?

Our office is always open to comments, concerns, questions, and ideas about accessible transportation and mobility in Tennessee.  We also issue an annual report every year, and we would love to include your transportation stories - both success stories and challenges that you face. 
 
Anyone with transportation-related comments is welcome to reach out to me directly at emily.duchac@tn.gov, or to contact us through the office email at TDOT.OMAT@tn.gov.  

New tool to find tech: TN Tech Connect

Tennessee Tech Connect is a brand new collaborative program between TN Disability Pathfinder ("Pathfinder") and the TN Department of Intellectual and Developmental Disabilities (DIDD). It was developed to provide information to the disability community about assistive and enabling technology.

The goal was to create a platform that connects Tennesseans with disabilities to technology tools that can provide support to them. You can search for devices, apps and other tech that can help with:

  • job training
  • transportation
  • independent living and daily tasks like cleaning, cooking, home safety, and taking medicine
  • communication
  • and much more!

Explore TN Tech Connect today by using the search options for type of need, stage of life, disability, payment options or other categories. We'd love to hear when you find a new tool that can help you achieve your goals!

Grants for adult-size changing tables extended through June 2024

During the 2022 legislative session, the TN General Assembly voted to invest $1 million to increase access to adult-size changing tables across the state. As part of that effort, led by many of our Council members, a new grant program through the TN Department of Intellectual and Developmental Disabilities (DIDD) was created. The program gives local governments and businesses open to the public up to $5,000 to buy and install height-adjustable adult-size changing tables in family restrooms across the state.

DIDD's grant program has been extended for another year! We still need your help finding businesses and other groups across TN to apply for the grant so that families throughout the state who need these tables can access them. Where do lots of families go in your community? That's where tables are needed!

Read more details in DIDD's press release here: "DIDD Extends Applications for Adult Changing Table Funding".

For stories about the need for adult changing tables, check out this page on our website. Please share this great new video from DIDD about a new table installed at the Creative Discovery Museum in Chattanooga and help us spread the word about this opportunity!

Disability Policy Corner (July 2023)

We're on a break from our weekly policy newsletter until the legislature begins again in January. In the meantime, we'll keep you updated here on the most important state and national policy news affecting people with disabilities. 

Give Feedback and Get Involved (July 2023)

  • Now open - MAPS in West TN: This month, the new MAPS (Medicaid Alternative Pathways to Independence) program under the TN Department of Intellectual and Developmental Disabilities opens to people with disabilities from West TN. That means that now anyone across the state can apply for this program if they have an intellectual/developmental disability, graduated high school or will graduate within three years, and don't get any other long term services and supports. Learn more on DIDD's webpage about the services MAPS has to offer.
  • Deadline July 31 - Nominate an employer for TN's NEW "Inclusive Employer Award" - We need your help finding employers who are doing an excellent job hiring and supporting employees with disabilities! Nominate or help a business, employer, or state agency in your community apply for the award by July 31. Email Sundi.Wright@tn.gov. with any questions.
  • Deadline July 31 - TN Digital Access Survey - Take this brief survey here to help the TN Department of Economic and Community Development what barriers you or your family have with affording or using the internet or devices like smartphones, tablets or computers.
  • Vanderbilt/Amerigroup "Project ECHO" looking for health care providers to train on working with patients with disabilities: Do you wish your health care providers better understood how to serve you or your loved ones with intellectual and developmental disabilities? "Health care providers" can include doctors, nurse practitioners, physician assistants, psychologists, psychiatrists and licensed clinical social workers who work with Amerigroup/TennCare patients. Email the name and phone number or email address for your doctor or clinic, and the Project ECHO training team can take it from there: projectECHO@VUMC.org. They will contact the health care providers with information about the training.
  • Survey about mental health and behavioral health needs of TN children, teens, and young adults with disabilities:  This survey led by Vanderbilt researchers is about the experiences of parents and caregivers of youth with disabilities ages 1 and a half to 22 years old who also have a behavioral/mental health concern. This survey should take 30-45 minutes. See the link for more information. Contact Leah Sulmonetti or Gaby Herrera-Espinosa if you have any questions, comments, or concerns: Leah.sulmonetti@vanderbilt.edu or gabriela.herrera.espinosa@vanderbilt.edu.
  • Deadline Aug. 1 - national survey about needs of minimally verbal/non-speaking people (National Institute on Deafness and Other Communication Disorders). NIDCD invites anyone with interests in communication in minimally verbal/non-speaking people to fill out this survey from a personal, service delivery, or research point of view.
  • Aug. 17 - TN-NADD (TN's state chapter of the National Association of the Dually Diagnosed for people with intellectual/developmental disabilities and co-occurring mental health diagnoses) Annual Conference. People with disabilities and family members can attend for $20; there are in-person and virtual attendance options. See the agenda here and register for the conference here ASAP. (No special code required for registration.)
    • Council Executive Director Lauren Pearcy will be presenting on the Council's work on promoting behavioral health best practices. Roddey Coe, 2018 Partners graduate and former Council member, will be speaking during the final panel. Other past Partners grads are featured speakers too!
  • Aug 26 and beyond - New monthly Saturday "Sibshops" launching in Middle TN (Nashville at Vanderbilt University) for kids ages 8-13 with brothers and sisters with disabilities. Click here to fill out an interest form and be added to the contact list for more information.