May 2023

Click here to see the original email campaign with photos.

From the Council's Chief Public Information Officer

Dear readers,

You may have noticed us talking a lot lately about behavioral health for people with intellectual and developmental disabilities (I/DD). I am happy to share that we have a new web page about this topic. “Behavior supports” is now listed under our current priorities website tab.

But let’s back up for a minute. WHY is the issue of behavior supports a priority for our Council?

My daughter, Lina, is 10 and has Down syndrome. She is a bright kid who takes in so much – and has big feelings about all of it. Sometimes, she doesn’t have the words or tools to manage those feelings or to say what she needs. That can lead to behavior that hurts others or disrupts her learning at school. We’ve learned a lot about supports that set her up for success. But needs can change. The detective work of understanding Lina’s needs is never really over. That’s how our Healthy Behavior checklist began – from my own experience. (That checklist is a tool on our new page. Share it, download it, bookmark it!)

I have learned that Lina is far from alone. Our Council staff hears stories nearly every day about people with I/DD who have behavior support needs. Their families and supporters are often struggling to understand the needs behind the behavior. The right help can be very hard to find. As parents, seeing our kids struggle creates stress for us, too. In fact, we all have support needs!

The Council’s new web page offers one place for clear, reliable information and resources about behavioral health for Tennesseans with intellectual and developmental disabilities. But we know this is just the beginning. There is much more work to do. Your stories help us understand what’s needed and where we want to go. As always, our vision will be rooted in our Developmental Disabilities Act values of self-determination, inclusion, and independence for all people with disabilities.

Contact us with feedback on the new webpage or share your experiences any time at TNDDC@tn.gov. 

Have a great rest of the week, everyone!

- Jolene Sharp, Chief Public Information Officer

Reflections from Public Policy Intern Lindsey Guerin

"With my internship ending this month, I wanted to first thank the members of the Council and everyone else I have had the opportunity to meet! I had a fantastic experience working with the Council and have learned so much. In my introduction newsletter back in January, I mentioned that I had hoped to learn about programs, resources, and other ways to help people with disabilities and their families during my time as an intern. While I feel like I have done this, I have also learned so much about state government and the disability community.

Coming from a biomedical PhD program, this internship was out of my wheelhouse but I was able to immediately appreciate how important the work the Council does is to the people of Tennessee. The programs and resources available to people with disabilities are incredibly complicated and confusing. I can only imagine what it feels like to have to navigate this system for yourself or a loved one. I have been so impressed by the in-depth knowledge that I’ve seen friends and family put into action. However, I have also been struck by how this all feels incredibly frustrating. Trying to find an existing service, or create one that’s desperately needed, requires an understanding that you must build on over years. It felt to me that getting information out to the people who would benefit most is the limiting step. While there’s clearly work to be done, it feels like the Council is making real progress. Through listening and learning, I was happy to contribute to their work for the brief period of my internship.

It’s easy to get caught up in the political news at the federal level— it seems like there’s always a fire somewhere. However, I now more clearly appreciate how the programs at the local and state level impact people every day. My experiences in this internship have motivated me to stay informed and involved in disability policy. As I think about my next steps after I defend my thesis, I hope to continue working to create opportunities and improve the experiences of people with disabilities and their families. "

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We thank Lindsey for her tireless efforts on a variety of policy projects this semester!

Get to Know a Leader: Jay Camperlino, Youth Transitions Director, TN Department of Intellectual and Developmental Disabilities

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

Meet Jason “Jay” Camperlino, the Youth Transitions Director for the Department of Intellectual and Developmental Disabilities (DIDD). Jay oversees the development and implementation of the Medicaid Alternative Pathways to Independence program, otherwise known as MAPs.

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

I began my career 20+ years ago as a Direct Support Professional working directly with people with disabilities who exited state institutions.  Over the years, I have held various leadership roles with organizations including serving as Executive Director for a provider agency in middle Tennessee. I also have experience providing direct foster-based care for individuals within my home. I often draw on my direct experience as a DSP/Foster Family in my role now as the leader of the MAPs program. These experiences drive my passion for supporting people with disabilities to live meaningful and independent lives. 

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

Well, the entire development of the MAPs program has been the most exciting and challenging program I have ever been involved with!  Starting a program from the ground up is full of wonderful opportunities, and I am just so excited to be able to work on this program day in and day out. Helping provide the shape to a program that will provide access to technology and employment opportunities for people with intellectual and developmental disabilities is truly exciting!

I get to work with wonderful partners at Vocational Rehabilitation, TennCare, and staff within the Division of Program Innovation at DIDD; it truly has been a blessing to perform these work roles!  Ask me about how MAPs can help you!  I love talking about this program!

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

Oh man, great question!  I would say communication and transparency cannot be underestimated.  Trust is developed and maintained through appropriate and effective communication, and without ensuring that there are avenues to speak openly, well, we would miss those opportunities to grow.  And without transparency, good ideas and recommendations may not come to the surface. 

I hope to approach each situation recognizing just how important communication and transparency is when working with my community and partners. 

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?

Honestly, I am so darn proud of the State of Tennessee for its vision and commitment to using the current magic wands at our disposal.  I think the addition of the MAPs program is removing a barrier to services that didn’t exist for several Tennesseans.  I applaud the vision of our Governor and state legislature for hearing the opportunity to offer a program like MAPs and voting to approve the funding to deliver!  Now, we have our work cut out for us to make sure that the MAPs program and services look consistent across all areas of Tennessee.

I am often asked about how rural areas are going to have the same opportunities to access community resources like other regions and, candidly, there is just still a barrier in some locations in the state of TN to access high quality/high speed internet.  If I could wave that magic wand, it would be to ensure that the entire state of TN had uninterrupted and dedicated internet services. 

What are some activities you enjoy doing in your free time?
Being a husband and a father are the single greatest joys in my life.  I am blessed to spend time with the love of my life, Brandy, and together raise 2 rambunctious and very busy boys!

My oldest son, Brayden, is learning to drive and while this is a terrifying experience, I enjoy seeing him grow and mature into a fine young man that he is becoming.  My youngest son, Bryson, is almost like looking in the mirror.  I enjoy all the unique and fun situations he puts me in to be the best dad I can.

With both of my boys being athletes, I can often be found traveling the state heading to some form of athletic event and I would not have it any other way!

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

I would encourage ANYONE to reach out to me directly, via phone or email, anytime they have a question, recommendation, or concern regarding anything related to the MAPs program.  My email is jason.camperlino@tn.gov and my phone number is 629-250-9367.

This is a new program, and we are learning along the way, and it is my commitment to engage in those honest and transparent discussions regarding the progression of this program.  I want to hear from you.  I need to hear from you.  And I thank you for reaching out to me as it will only make this program better! 

Disability Policy Corner (May 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. 

Tennessee Disability Pathfinder Feedback Survey 

Have you used Tennessee Disability Pathfinder (www.tnpathfinder.org) within the last year? Help Pathfinder by sharing your experience! Complete a brief feedback survey (3-4 minutes).
 
Click here to share your thoughts before May 31: https://redcap.link/8vhac3um
 
Thank you for sharing your feedback!

Digital Access Survey

The TN Department of Economic and Community Development (TN-ECD) is writing a "State Digital Opportunity Plan." The plan will support new state programs that will help with digital skills, literacy, inclusion, and affordability. This can include:

  • being able to use or access the internet
  • having enough money to afford internet access and devices like smartphones, tablets, or computers
  • understanding how to use the internet and devices safely and effectively

They need to hear from Tennesseans with disabilities, as well other underserved groups, including:

  • Older Tennesseans
  • English language learners
  • Rural residents
  • People with low incomes
  • People from racial/ethnic minority groups
  • Veterans
  • People who were incarcerated within the past 6 months

Take the brief survey here - it is 7 questions long and should take less than 5 minutes. The survey will not collect any personal identifying information. 
  
If you have any questions or concerns, contact Leah Mims (leah.mims@tn.gov) or Codi Drake (codi.drake@tn.gov). Help share this survey so they can hear from as many Tennesseans who need help with digital access as possible.

Survey for Tennesseans with low vision and blindness

A company named Synergy Consulting is leading a survey for people in TN with low vision or blindness. This survey will help the TN Department of Human Services' Vocational Rehabilitation (VR) program understand the needs of the blind and low vision community so they can improve their services to better meet those needs.

The survey is anonymous and should take about 10 minutes to complete.  You can take the survey on your home computer, tablet, or smartphone. 
 
Click on this link to take the survey: https://synergyconsulting.qualtrics.com/jfe/form/SV_5vb8q9Vh065Y1Bs

If you prefer to take the survey by telephone, use the following link to schedule a date and time for someone to assist you in taking the survey: https://calendly.com/calsynergy/low-vision-blindness-survey

If you have questions, contact any of the emails listed below.