Tennessee Council on Developmental Disability

Transcript

Marsh Naidoo (00:24):

Welcome to the Raising Kellan podcast, and today we bring to you episode 60. My name is Marsh Naidoo and I blog at raisingkellan.org where we curate resources for parents raising children with disabilities. There is much going on in the month of March. March is advocacy month with the 11th of March being Tennessee Disability Day on the Hill, as well as Cerebral Palsy Awareness Month. And coming up soon thereafter in April is World Autism Month.

(01:03):

As always, remember the content brought to you on this podcast is purely informational and is not meant to replace you seeking advice from a professional. So guys, grab that cup of coffee, put your feet up, and join us along for some awesome conversation. On today's episode, I speak with Kathleen Smith, as well as Emma Shouse of the Tennessee Council on Developmental Disability.

Marsh Naidoo (01:39):

Welcome to the Raising Kellan podcast. I am sitting this afternoon with Cathlyn Smith. Cathlyn is a medical social worker by training, as well as the Director of Leadership Development. Emma's Shouse is the Public Information Specialist at TNCDD and both these ladies work at the Council on Developmental Disability. This is an organization that I am excited to hear more about. I really would like to dive into the work that you guys do as well as an interesting opportunity that you have coming up pretty soon. I'm not sure which of you ladies would like to go first, so I'm just gonna open the floor to y'all

Emma Shouse (02:29):

Thank you so much for having us and especially since we reached out just a couple of days ago. Thank you for making time for us to share information about the "Partners and Policymaking" program that we'll talk a little bit about, which is currently accepting applications. So thanks for helping us spread the word. So I'll share a little bit about the council. The Council on Developmental Disabilities is an agency, an independent agency within state government. Every state and US territory has a body like ours, a council on developmental disabilities. We were created through federal legislation called the Developmental Disabilities Act back in the seventies. And so our role is really to connect people with disabilities and their families to Policymakers who are making decisions that impact their lives. So not only elected leaders, like the state legislators, but also the top leaders at programs within state governments that create policy and practice decisions all across the lifespan from early intervention, special education, transition years, employment services, and Medicaid services through Aging services.

(03:55):

So we have a really unique role in that we kind of have that bird's eye view across the lifespan and across all different parts of a person's life. Working to promote systems change by building partnerships and building bridges for parents or community members looking to kind of learn about the landscape of disability organizations. It can often feel pretty overwhelming and confusing. But something to know about the council is that we are an independent agency within the State government. We don't provide any direct services. Our role is more in building those partnerships advocacy, public policy and connecting families to resources.

Marsh Naidoo (04:40):

A question of mine would be, now how are you guys related, for example, to the Department of Education, Department of Health, or DIDD?

Emma Shouse (04:56):

Excellent question. So we are kind of a sister state agency to all of those departments that are part of state government, but whereas they're delivering actual programs and overseeing direct services to people with disabilities, our role is a bit different. But on our council, so Cat and I are staffed for the council. We're a small but mighty team, there are only 10 of us. But then the council itself is made up of Tennesseans with disabilities and family members of people with disabilities who are appointed by the Governor all across the state. We have 20 citizen members who represent quite a diverse age range and different types of disabilities, in all parts of the state. And then in addition to those private citizen members, all of the departments that have disability-related programs like DIDD, like the Department of Health, the Department of Education, the Commission on Aging and Disability Commission on Children and Youth Vocational Rehabilitation, all of those programs have leaders who sit on our council. And so our staff is working day in and day out on all sorts of goals to move the system forward. But then four times a year that group of citizen members and agency representatives come together to talk about what's working, what's not working, what are the gaps and the barriers, what are the issues that real Tennessee ends with disabilities and families are facing, and how do our programs and policies need to change?

Marsh Naidoo (06:44):

Thank you so much for that Emma. Cat I have a question related to your role as Director of Leadership Development and the Partners in Policymaking program that you guys have coming up, can you tell me and the audience who this leadership program would appeal to and a little more as far as the content of the program and what's being offered?

Cathlyn Smith (07:11):

Sure. I'd be happy to! The Partners and Policymaking program is our leadership training program that helps prepare adults with intellectual and developmental disabilities or their parents or caregivers or siblings or other adults with I D D to be effective advocates in their communities. We look at local, State and Federal issues and how they can be a part of and partner with policymakers in those areas. It teaches leadership skills and techniques to develop those positive partnerships in how to connect with say your city council or even in the school system, you know, want to get involved in the parent-teacher organization or you have an issue that's really bothering you and you think that you are not the only one that has this issue and you've got an idea of something that can help solve it. So you know, you may need to reach out to your legislator and say, Hey, Mr.Legislator or Miss Legislator, I have an issue that's of concern to me and I wanna pick your brain to see if you can help me come to help figure out a resolution. We have many people that have had those ideas that have led to huge policy changes and law changes and all it takes is one voice and one idea to get that done. So who we are appealing to for this class is adults with that have intellectual and developmental disabilities, their family members or caregivers. And we are really looking to get people of color because we've not had a lot of people of color in classes in the past. And so we really wanna reach that audience along with grandparents, uncles, brothers, we want some more men in the fight with us as well to learn how to be self-advocates. And often times when you are wanting to speak on an issue, you just don't know where to begin. Yes, you don't know how to start the process. And so one thing that Partners in Policymaking does is make that process hopefully less intimidating and help you realize that those policymakers, they're just like you and me, they wake up just like you and I, they put their pants on just like I, and many times they want to hear from their constituency and who better to give them insight about life with a disability than a person living it.

Marsh Naidoo (10:07):

Absolutely. So Cathlyn more about the program. How does it run? Is there an application process? Can you tell us more?

Cathlyn Smith (10:20):

I can. Currently, we are accepting applications for the "Partners in Policymaking" program. Our application timeline began March 1st and we're gonna receive applications through March 31st. You can go to our council link and we'll share that information and there's a link on there to fill out the application electronically or if you want a paper copy, you can feel free to give me a call and we'll shoot one in the mail to you if that's easier for you because we want it to be easy. But the training class lasts from September through April and these past couple of years we've met virtually due to the pandemic. So our next class I hope to be able to pull in some in-person classes. That's contingent of course on the current health crisis and how that's going cause we do wanna make sure that we keep folks as safe as possible.

(11:17):

But the main thing about Partners is that it's free. It doesn't cost you anything but your time, a little time, engagement, and participation. Some of the things topics that we cover are, we look at the history of disability movement, the parent movement, independent living movement. We look at inclusive education and transition services for kids. We look at assistive technology. Tennessee is very fortunate to have a tremendous enabling technology program through DIDD. And I'm amazed every time I talk to those folks, they're showing a new gadget or gizmo to help people communicate better and be more included in society. So that's a really good thing to learn about. We learn about ways to help folks find a path into employment if that's what they choose to do and that anyone with a disability should not feel that they can work if that's something that is a goal they have for themselves.

(12:33):

We look at person center planning, that's something that's really important. Tennessee has the Center for Decision-Making Support now. Which is a wonderful tool for people to use, to make the best decisions for themselves regarding their life. And then we learn about the state and state legislative process and find out simply who your representative is? Who would you go to ask questions or give your idea to? So we look at that as well in Partners as a whole, it's just about systems change and how important learning how your voice matters in making those sys that system change through small incremental steps.

Marsh Naidoo (13:30):

Emma, you belong to a really interesting organization called TABS. Tell us more.

Emma Shouse (13:38):

Absolutely. So TABS stands for Tennessee Adult Brothers and Sisters. TABS was created about a decade and a half ago by the council in Vanderbilt Kennedy Center to work on developing this community of siblings of people with disabilities and offer support to siblings. We are an official state chapter of the National Sibling Leadership Network. About 26 states have chapters that are part of the Sibling Leadership Network. And so during the pandemic, we have focused mostly on monthly virtual gatherings where we talk about issues that are relevant to the lives of brothers and sisters of people with disabilities. So some of those topics have been accessing health care during the pandemic person-centered planning effective communication with our families resolving conflict within our families if that's something we face how to have productive relationships with our sibling's service providers. So would welcome anyone who knows of siblings looking for more information to go to the tabs Facebook page. Just look on Facebook, Tennessee Adult Brothers and Sisters and follow us. And that's the best way to stay up to date about our upcoming events.

Marsh Naidoo (15:17):

And this question would apply to both Emma you and Cat as well. If there was a resource that a parent in Tennessee would go to for their child with a disability. Can you guys name two or three off the top of your head ?

Emma Shouse (15:41):

Absolutely. I think Cat and I would both say the number one resource to know about that we want folks to know about is Tennessee Disability Pathfinder. You can go to www.tnpathfinder.org. Pathfinder is the central hub for information about what services, programs activities for people with disabilities and families are available in Tennessee. So they just did a wonderful redesign and relaunch of their website. So it is much more user -friendly now and easy to use. And so you can search by your county or part of the state, you can search for different topics from healthcare to education to childcare, employment financial assistance, all sorts of, anything you can think of and they have a multilingual helpline. So no matter what language you speak Pathfinder staff can get you the help that you need. So that's one I think just really important resource. Another that comes to mind is if you have a loved one who's transitioning from high school to adulthood transition, Tennessee, which I believe is www.transitiontn.org, the wonderful one stop shop for information for educators, students and families about the move from high school into adulthood and either continuing education or employment. But those are the two that come to mind for me.

Marsh Naidoo (17:33):

Cat and what about you?

Cathlyn Smith (17:33):

Right, and ditto tofor what Emma said. One thing I will say about the disability Pathfinder, oftentimes I hear from folks they're trying to get connected to different types of events to include their children in or families in and Disability Pathfinder does have an events tab they go to see what's happening in your area to help you connect to other families or in your community. So that's a really good feature of that. The Arc of Tennessee also has a plethora of great information on their website as well. So that's another one to utilize to garner resources and information.

Marsh Naidoo (18:17):

Before we end off, I always find it interesting asking this question. How did you guys come to the Tennessee Council of Developmental Disability? What was the motivation or drive that led y'all to join the organization?

Cathlyn Smith (18:39):

I think for me I have a personal connection to disability with my daughter. My daughter was born with a congenital eye disease and subsequently, later we found she had hearing loss as well. And so, I was a single parent for the majority of the time, well since she was about five until she graduated high school. And so I raised her by myself and as a parent a single parent raising her child with a disability it was extremely difficult just from a support standpoint, financially. And I think when she was born, I think the most startling words a parent can get is something is wrong with your child. I mean, just an automatic fear that you get of the unknown. But thankfully I've been in a position to make sure that she had good doctors, but still, as a new parent, you just didn't know where to go to find the information.

(19:48):

And this was almost 30 years ago, so I'm telling my age now. But of course, hopefully a lot of the resources have improved from when I first started and I wish I had had something like a disability Pathfinder and some of these other resources that are now available. But it's still hard to find the information sometimes. Yes, it is. Yeah. And so you have to do research. And I think one thing that stood out to me when she was in junior high high school going into that phase of life I had a hard time in getting her to self-advocate for herself because she didn't want the attention drawn to herself. She wanted me to handle everything. And so as talking to a preteen or teenager in itself is hard but it's even harder when they're not wanting to confront their disability in that way. So that was a tough time, but we made it through it.

(20:57):

And I can happily say now that as an adult, she is a fierce advocate for herself. She stands up not only for herself, but others. And it just took time and confidence in working with her teachers in school system and our village just surrounding her to help her be successful. Because number one, I said, although you have a disability, the key word in that is ability. And you may not get to the end point the way I get to it, but you find the way that works for you to get there. And so that's been my motivation. She's been my motivation throughout my career. And one thing that really led me to the Council was just the mission of helping people use their voice and find their voice and make change. So that's the thing that was appealing to me about the council.

Marsh Naidoo (22:01):

Thank you for sharing that Cat and Emma.

Emma Shouse (22:05):

Yeah. So as you might have guessed from the earlier part about the sibling network, I'm passionate about that work because I have a brother with autism and intellectual disabilities. I feel like I ended up at the council because I spent my whole childhood and teen years seeing both how powerful it was for my parents to get plugged into the disability community and get support from other parents to really help them understand how to navigate this road but also seeing them really struggle with education systems that had low expectations for my brother, that we were on a waiting list for services that was thousands of people long and watching them really start to advocate for how the state needed to change the way that we support people with disabilities and their families. So I suppose it, it's in my blood now <laugh>, the passion for disability advocacy and policies. So I ended up doing an internship even while I was in college at the council, and it just kind of never left because I think the scope of the work that the council does looking across the entire lifespan in all different types of services and the whole state is really exciting in its potential to create positive change.

Marsh Naidoo (23:40):

I'm reading a book right now by Judy Huemann who is considered the "Mother of the Disability Movement" And I tell you there's so much that as a parent you are unaware of. I had no idea about the history of 5 0 4 and the disability movement and if that history is something you had awareness of you can't help but feel proud of those who can before to advocate for policies to help our children be independent as possible. So to end off is there any message that you guys would like to leave us with as far as the application for the program?

Cathlyn Smith (24:33):

I do want to share our website so that folks can go to the website to, and then click on the Partners and Policymaking tab. Our website is www.tn.gov/cdd. And then if folks would like a paper application to be mailed to them or just have further questions about partners they can give me a call at (615) 532-6556 and I'll be happy to answer any questions.

Marsh Naidoo (25:21):

Guys, thank you for so much for joining us tonight. You'll have an amazing evening and I think just to note is Friday the deadline for the applications?

Cathlyn Smith (25:35):

March 31st? Yes, March 31st.

Marsh Naidoo (25:38):

So it's about less than a month from now when it's how many participants can apply? Or is there a maximum number that it chops out at?

Cathlyn Smith (25:50):

Yes, I'm trying to cap the class size at 30.

Marsh Naidoo (25:54):

All right.

Emma Shouse (25:55):

It's an annual program. Yeah. So if you don't get in this year or if this year doesn't work for your schedule set a calendar reminder for next March to apply for the 2023 Class

Cathlyn Smith (26:10):

<laugh>. Yes, please. Thank you very much

Marsh Naidoo (26:12):

Do y'all meet every month? What is the time commitment?

Cathlyn Smith (26:17):

Yes. Yes. We meet monthly and like I said, since we've been doing it, virtually be, we meet two days a month virtually.

Marsh Naidoo (26:27):

Well, I thank you for your time, ladies.

Cathlyn Smith (26:29):

Thank you so much for having us.

Marsh Naidoo (26:31):

Have an amazing evening. Right,

Cathlyn Smith (26:33):

You as well. Thank you.

Marsh Naidoo (26:36):

Bye

Cathlyn Smith (26:36):

Bye-Bye Byebye,

Emma Shouse (26:39):

See you.

Marsh Naidoo (26:40):

We sincerely appreciate you listening along with us today. Thank you so much for your time. If you would like to contact us in the future, you may do so @raisingkiengmail.com and to follow along, check us out on Facebook, Instagram, at YouTube at Raising Kien. A lot of the information that is present on our podcast is actually on the YouTube channel as well. Guys, as always you have an amazing day. Thank you again to Cathlyn Smith, as well as Emma Shouse for telling us more about the Tennessee Council on Developmental Disabilities. And be sure to check out their Partners in Policymaking program. It is bound to offer a lot of value and a lot of help to those parents seeking the information. Have a wonderful rest of your day, and as always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.