December 2022

From the Council's Chief Public Information Officer

Dear readers,

My note this month is short and sweet – wishing you and those you love the very warmest of memories and peace and joy to last the year through.

From all of all of us at the Tennessee Council on Developmental Disabilities: HAPPIEST OF HOLIDAYS!

Jolene Sharp
Chief Public Information Officer

Jan. 15 deadline - Want to be a featured artist? Send us your work for Breaking Ground!

You could be published in a magazine reaching 6,000 people statewide!

Every year, the Council produces a special issue of our magazine, Breaking Ground, celebrating the creative work of Tennesseans with disabilities. We feature all kinds of artwork and writing, as well as articles about inclusive arts programs across the state.

Explore last year's issue, including videos from featured artists, here.

If you:

  • create any kind of visual art
  • take photos
  • write poetry, creative essays, or stories
  • make crafts
  • engage in other artistic activities

... send us your work! We can consider written work up to 1,000 words and up to 3 pieces of visual artwork.

If you act in plays, play instruments, sing, or dance, feel free to send us photos of yourself doing those activities, too.

Send your work by email to tnddc@tn.gov before January 15, 2023. Please include:

  • your name
  • where you live
  • a brief bio

It is important to us to celebrate work by artists from all kinds of diverse backgrounds, with all types of disabilities, and all sorts of life experiences. Please help us spread the word in your networks about this opportunity!

PowerUp Camp: Taking It to the Next Level with Technology

By Cathlyn Smith, Director of Leadership Development, Tennessee Council on Developmental Disabilities

Where can you go to experience a virtual reality game, zipline, and s’mores? PowerUp Tech Camp, of course!

In 2020, I joined a new workgroup with the Department of Intellectual and Developmental Disabilities (DIDD). Our mission: to create a technology camp for youth with intellectual and developmental disabilities (I/DD). Over the years, the Council has offered different types of leadership and self-advocacy trainings for youth and young adults with disabilities. We’ve hosted trainings in high schools, on college campuses during the summer, and in partnership with Centers for Independent Living. Along with our partners at DIDD, we wanted show youth with disabilities how technology could help them lead good lives.

During early conversations, I suggested the YMCA of Middle TN as a potential partner for the camp, since they already offer many recreation programs for people with I/DD.  “Full Circle” through the Brentwood YMCA offers classes and activities like swimming, arts, and music for people with intellectual and developmental disabilities. We decided to try out this new technology camp with youth connected to the Brentwood YMCA Full Circle program.

The workgroup met monthly through 2021 to develop goals and activities for the camp.  DIDD recruited technology vendors (including Able Link, CreateAbility, and Simply Home) who agreed to showcase new enabling technology to campers, their caregivers, and support staff.  The camp was led by DIDD’s “Tech Champions,” the director of DIDD’s Enabling Technology program, the YMCA Full Circle program director, and myself.

DIDD had a grant to fund the camp and the Council on Developmental Disabilities served as a partner for the project.  

On Oct. 13-15, 2022, we hosted the first PowerUp Technology camp for 35 young adults with disabilities ages 16 and older. It was held at Camp Widjiwagan (a YMCA camp located on Pearcy Priest lake in Nashville). It was a free day camp, with a new group of youth with disabilities participating each day. We provided snacks, lunch, T-shirts, swag bags, and certificates to the campers. We also offered a sensory room for those who needed some “quiet time” away from activities. We had an accessible private space for toileting/changing needs. Several campers were supported by staff or caregivers who helped them participate.

Campers visited three “tech stations,” where they got to try several different kinds of assistive technology.

  • At one station, campers used the Wayfinder app to navigate across the campground to the next station. Wayfinder can help people with disabilities get around town with precise navigation using maps and pictures.
  • At another station, campers safely boiled water on an induction oven, worked an automated medication dispenser, and tried out a video doorbell. These tools are offered through SimplyHome.
  • At a third station, campers used the MeMinder app offered through CreateAbility. The app uses pictures and voice directions to help a person finish different tasks based on their interests. The MeMinder app can be used on the job to set alarms and prompts to help the person stay on task and finish jobs successfully. One camper who enjoys cooking explored the app’s tools for safely and accurately following recipes.

Computer stations set up in the main camp lodge were set up for safe web browsing and games. Family members or supporters could learn how to manage access to keep the user safe on the internet.

Besides learning about all kinds of technology that can help them live more independently, the campers had a blast enjoying:

  • a fully accessible zipline
  • trampoline time
  • using virtual reality goggles
  • making s’mores at the fire pit
  • winning door prizes from the technology vendors

At the closing ceremony, the campers were given a camp t-shirt & certificate of participation.  We designed this camp so that it could be replicated across the state in the future with new partners.  

I recently asked two of my partners on the camp planning group, Carrie Brna from DIDD and Susan Sistruck from the YMCA Full Circle program, some questions:

How important are partnerships for a project like this?

  • Carrie: I think the PowerUp Tech Camp was successful because of the strong partnerships between the entire planning team: DIDD, the Council on Developmental Disabilities, the YMCA, and technology vendors. We regularly met for 2 years to work through all the details from start to finish. We planned everything together, from the camp location, camper recruitment, down to smaller details like the lunch menu and team names. Without the support of our partners and planning team, the whole experience wouldn’t have been possible. I am very grateful for everyone’s contribution to making camp such a fun and enriching experience for the campers.
  • Susan: I think strong partnerships are very important! By joining together, we can serve more people with disabilities, their families, and their support staff and make a bigger impact in the disability community. I also feel that by working together on projects like this, we learn so much from each other, making us more effective in our roles within our organizations. 

How do individuals with I/DD benefit from this type of camp?

  • Carrie: PowerUp Tech Camp provided the opportunity for people to experience firsthand different technology options that can be used to help them achieve their goals and to live, work and travel in their own communities more independently. Many of the technologies and devices that the campers learned about at camp were brand new to them. Just educating people about all types of technology will hopefully spark a new curiosity and further their interest in technology in the future.
  • Susan: People with I/DD, especially adults, don't often have opportunities to participate in a fun, informative, social event such as this. Having the opportunity to try the different enabling technologies was great for not only the adult with I/DD, but also their support staff. By combining education with the fun of the camp atmosphere, it was truly a unique experience. The campers had fun, made friends, and tried new things.

What did you personally get out of this experience?

  • Carrie: The best part of camp was getting to know the campers and watching their excitement as they were learning about the technologies. Sometimes, it’s hard to truly know the impact of our daily work at DIDD on the people we support. But spending time with the campers and seeing their excitement with all the experiences we organized for them at camp was the best reminder of why I love what I do.
  • Susan: I learned about enabling technologies that are available. This is helpful in my work with adults with I/DD. I am excited to share my knowledge. It was truly a joy to watch the campers as they were introduced to the possibilities of becoming more independent. I also loved seeing them interact with the other campers, making new friends, and overcoming their fears in trying new things like the zipline.

As for me, what I most enjoyed was working together with different professionals who serve people with disabilities in different ways. We all brought unique and personal perspectives to the table. PowerUp Tech Camp brought back many fond memories of my own summer camp days. I was a counselor one summer at a camp for people with I/DD, and it was one of the most rewarding experiences I’ve had.

At the end of one PowerUp camp day, I was sitting with a young participant. We were enjoying the s’mores we just made. He said as he laughed, “Ms. Cathlyn, I REALLY enjoyed myself today. I can’t wait to tell all my friends what they missed and I cannot WAIT to come back next year!”  The pure joy and excitement that this young man shared was the best outcome I could have imagined!

Get to Know a Leader: Penny Johnson, TN's Center for Decision Making Support, The Arc Tennessee

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

Meet Penny Johnson, the director of the TN Center for Decision Making Support, a part of The Arc Tennessee and supported by the Council, Disability Rights TN and other partners.

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

I have 18 years of diverse social services experience and 10 years in private sector employment. My social service experience includes:

  • eligibility work
  • case management
  • program management; and 
  • program, policy, and training development

I started my social service career working for the Welfare Department in Las Vegas, Nevada. After moving to Tennessee, I worked for the Murfreesboro Housing Authority and later took a position at the TN Rehabilitation Center (TRC) as the Pre-Employment and Transition Services Coordinator. I left TRC to take the position with The Arc Tennessee as the Program Coordinator for their new program, the TN Center for Decision-Making Support.

As the Program Coordinator for the TN Center for Decision-Making Support, I manage all aspects of the Center's work from our website and program development to providing one-on-one help to people and families.

The TN Center for Decision-Making Support is a virtual resource center that provides information, resources, limited one-on-one assistance, best practice tools and legal referrals regarding decision-making support options. These options can include:

  • Conservatorship
  • Powers of Attorney
  • Special Needs Trusts
  • Supported Decision-Making
  • and more!

The Center works with people with disabilities, families, educators, and service providers to assist people with disabilities to develop decision-making skills and to learn about decision-making support options. The Center also provides workshops and trainings across the state. We provide advocacy help related to complex conservatorship issues and rights restoration cases.

What is one thing you’re working on right now that you are excited about?

I am really excited about the work our Training and Development Committee has been doing. They are a small group of representatives from various agencies who work with me to develop videos, trainings, and content for the website and Center materials.

We are currently developing a series of videos featuring Tennesseans sharing their stories of how they use Supported Decision-Making and other decision-making supports to create their “good life." (Explore our video library here!)

We are also developing a webinar series featuring national and state experts on topics related to decision-making supports, future planning, and practical tips to increase decision-making skills. These videos and webinars will be available to the public on our website. We hope this information will help improve the lives of people with disabilities.

What is one of the biggest lessons you have learned from working with TN’s disability community?

Tennessee has so many great resources and services for people with disabilities, yet I am surprised how often I meet families and professionals who are not aware of them. I think it is important to learn about as many resources as possible across the various service systems and share this information with others.

What are some activities you enjoy doing in your free time?

I am a nature lover.  In good weather, I love hiking, camping, swimming, biking, just about anything outdoors. (Just not fishing!) I also enjoy watching old classic movies and spending time with family playing board games.

When should members of the disability community reach out to you or your team directly?

Contact the Center when you need information about decision-making supports like conservatorship, powers of attorney, special needs trusts, Supported Decision-Making, etc. The purpose of the Center is to provide information about these tools in one central place. Though we can not provide legal advice, we can provide referrals to legal services.

You can reach the Center through our website contact page at https://www.tndecisionmaking.org/contact/. You can also contact me at 615.248.5878 extension 322; 800-835-7077 extension 322; 888-886-8310 (fax); or ds@thearctn.org.

Program Spotlight: Crisis help through TN START (TN Dept. of Intellectual and Developmental Disabilities)

Do you know people with intellectual or developmental disabilities who:

  • have recently been to emergency rooms or psychiatric hospitals for harmful behaviors?
  • had to move to a different setting because of challenging behaviors?
  • have complex mental health needs that required crisis intervention, calls to 911, or frequent medication changes within the last year?

If so, keep reading and share information about TN START!

TN START is a new program that started in 2021 at the TN Department of Intellectual and Developmental Disabilities (DIDD). The TN START Assessment and Stabilization Teams help people with intellectual and developmental disabilities (I/DD) who also have complex behavioral or mental health needs.

Right now, TN START can help any person with I/DD who gets Medicaid waiver services or those in the new MAPs program. See the list of those programs and read about future phases on the bottom of this webpage.  (DIDD will keep growing the program to serve more people. It is right now in "phase 2" of 5 phases.)

TN START is a collaboration between DIDD and the National Center for START Services. (The Council helped create TN START. We gave funding to DIDD to pay for training from the national center to build this new program.)

START stands for:

  • Systematic
  • Therapeutic
  • Assessment
  • Resources
  • Treatment

It is a comprehensive model of supports that helps people with disabilities work towards independence, treatment, and community living. TN START helps prevent and stabilize people during crises by:

  • Sending people to help someone and their caregivers during and/or right after a crisis ("crisis response")
  • Helping people connect to services and supports to keep them safe and improve their lives ("stabilization planning")
  • Training and education
  • Consultation
  • Partnering with different people and service systems that impact a person's life

Some highlights from TN START's first year:

  • The teams and Advisory Council learned about the current system that supports people with I/DD and mental health needs.
  • They worked to build capacity to support people with I/DD with mental health needs. They provided 84+ trainings across the state about TN START services, gaps in the system, and mental health for people with I/DD.
  • They developed a one-page reference for Emergency Rooms for supporting people with I/DD. (Read more about that story in our Council 2022 annual report - "Jackie's Story"!)
  • They began offering regular training through "Clinical Education Team" events.
  • 117 Tennesseans enrolled in the program and began receiving assessment and stabilization planning, as well as access to 24/7 crisis response.
    • Of the 298 crisis calls they got in 2021, 80% of the time they were able to stabilize the person in their community setting and avoid using other emergency services.

Check out these 2 videos about how TN START has helped real people in the program:

  1. TN START Overview
  2. Jadyne's Story (featuring 2022 Partners in Policymaking Leadership Institute graduate Jackie Kancir)

What's Next?

In 2023, TN START will keep moving through the phases of the roll-out plan to serve as many people as possible.

TN START will keep working together with its partners to make sure people with I/DD have access to person-centered and appropriate services and treatment to address their mental health needs.

Our thanks to Michelle Bagby for providing the information for this article. Michelle is Director of Behavioral Health & Crisis Services for DIDD. She is also the statewide Clinical Director for the Tennessee START Assessment & Stabilization Teams. Contact Michelle with questions about TN START or behavioral health supports for people with I/DD: Michelle.Bagby@tn.gov or (615) 615.913.0352.

Click here to refer someone to TN START.

Apply for inclusive higher education programs for Fall 2023 school year

Do you know students with intellectual disabilities who are leaving high school soon but want to continue their education? Make sure they explore Tennessee's inclusive higher education programs on college campuses! Learn more about these programs and financial help to pay for college on the TN Inclusive Higher Education Alliance website.

The deadlines to apply for the Fall 2023 semester are listed below with a link to each program's website. Many programs offer campus visit days where students and families can learn more.

Masked Autism Characteristics in High School Girls Study

Vanderbilt is conducting a study to better understand girls with autism and how/why autism characteristics are masked (or hidden or "camouflaged") in high school. If you are the mother of a high school girl with autism in inclusion for at least 80% of the school day, Vanderbilt researchers would love to hear the perspectives of both you and your daughter via a virtual interview and questionnaire. You can be paid for this study.

If you are interested, click here. Contact the research team by emailing Brittney.l.goscicki@vanderbilt.edu or sarah.a.calhoun@vanderbilt.edu.