Advocacy at The Arc TN
Transcript
MARSH NAIDOO (00:31):
Hi guys! Welcome to episode number 51 of the Raising Kellan podcast. My name is Marsh Naidoo and I blog at raisingkelan.org where we curate resources for parents raising children with disabilities. In today's episode, I speak with Dara Bacon, who is the communications director of the ARC of Tennessee. Dara is going to share with us her story regarding advocacy and how she came to the ARC, as well as the work being done at this organization. Today's episode is brought to you by Green Mountain Support Services of Vermont. They will be hosting the upcoming sixth annual Cerebral Palsy Conference. You can check out more about this@cerebralpalsyconference.org. The ARC is a national organization started by parents of children with disabilities in 1953. This was at a time where institutionalization of persons with disabilities was the norm. At the present time, the ARC has evolved into an indomitable voice for persons of disabilities, both in the public policy arena where they advocate for access as well as inclusion. Today we are joined by Dara Bacon, who is the director of Communications and Public Awareness at the Arc Tennessee. Welcome Dara and thank you for joining us today.
DARA BACON (02:20):
Hey, thank you for having me, Marsh. It's a pleasure to be here.
MARSH NAIDOO (02:24):
Dara, can you tell us a little bit about the Arc, its mission, and a little bit about its organizational structure for those folks who may not know about the Arc?
DARA BACON (02:36):
Absolutely, I would love to. So the ARC is actually a national federation. We've been around since the 1950s and our national headquarters is out of Washington DC and they lead our congressional advocacy efforts at the national level. And then most states have what's called a state chapter. So I work for the Arc of Tennessee, that's Tennessee State chapter. And then each state also has local chapters, which are often the ones providing direct support services for families. So at the state level here at the A of Tennessee, we lead more or less the advocacy efforts regarding state policies and public policy. And we also have pretty much a seat at the table when it comes to helping impact decisions made for the disability community. And that can look like anything from statewide services to initiatives to support and increase the quality of life for those that have disabilities.
MARSH NAIDOO (03:42):
Dara, now you guys have like 600 chapters and a thousand programs. I mean, that scale seems phenomenal to me and I think that speaks to your guys grassroots activism. We're gonna get back to the Arc, but I think it's gonna be really interesting for folks to know how you came to the Arc and a little bit about your background story Dara
DARA BACON (04:07):
Sure, sure. Well, actually, I guess the story really starts when I was growing up in Kentucky. So I'm a Kentucky girl <laugh>. I was born in Bardstown, Kentucky and I come from actually a big Catholic family. My mom is one of 13 and of all of her brothers and sisters the 12th of the 13 born was my Aunt Hettie. And she was born downright awesome. She was born with Down Syndrome. So from the very beginning I was part of a big family unit that was all about inclusion and love and acceptance and just helping head to live the best life that she could, even in a small rural Kentucky area. So the story starts there and then as luck would have it when I became a parent a couple of weeks before I gave birth to my first son, we found out he was gonna be born with Down syndrome.
(05:06):
And so now I get to step in or have embraced the role of being a parent of an individual with Down Syndrome, but also got the chance to really see what that was like from a family member perspective with my Aunt Hettie and growing up. So we're in Nashville, Tennessee now my son Uriah that has Down Syndrome. And let me just put it this way, his extra chromosome is only one part of who he is and I can get to that in a little bit later too. But among his many great qualities is his extra chromosome. And it's been incredible to see the difference in having an individual as part of the core person of your family unit having a disability and living with a disability in 2021. Compared to seeing my Aunt Heattie and growing up and living with a disability, she was born in 19, let's see, I think it was 60, 63. Do I have that right? No, 1969 mean just the way that the resources given to her are vastly different from the resources that are available to Uriah. And so I'm rather committed to expanding and increasing not only the resources, but just the overall inclusion and acceptance and seeing individuals with disabilities embraced for the individuals that they are and recognize that their disability is the only one part of who they are. We are all unique, right?
MARSH NAIDOO (06:49):
Absolutely. For those of us not in the know, how do we even begin advocating for kids? That might just seem like a daunting process or something we may believe that not be within our scope. I mean, can you shed some light to that and shed some light onto how we could advocate for our kids?
DARA BACON (07:12):
Absolutely, yes. I love it when families and self-advocates themselves get to advocate for what's important to them. You don't have to have a disability to be an advocate in the sense of just paying attention to the policies and the everyday decisions that impact your quality of life. We're reminded of that more in the disability community cuz there are so many decisions that come down that impact that marginalized population. But for me it wasn't until I was a parent, I kind of stumbled into advocacy <laugh>. And what I mean by that is that we had actually signed up to receive family support funding. So the state of Tennessee has a little bit of funds in their state budget set aside for families that have increased medical costs and other things. When you have a dependent with a disability and it's known as family support and the Arc of Davidson County one of the direct ways of supporting families with disabilities here in Nashville is to help the families go through the process of signing up and receiving that support.
(08:25):
And we had been on the wait list for almost two years, I think, to receive the support, which in this region was at the time, I think 800 or a thousand dollars a year. But we had just gotten the news that urh is gonna need SMO orthotics and those things are tailored to a person's foot and can run anywhere from a couple thousand dollars to just shy of like $4,000. And so that was a bill that we were not expecting to receive, and he had to have SMOs, I think the first six years of his life. And so we get the phone call that we've received, we're gonna be receiving the family support, and it was so encouraging. And a couple of weeks later I get an email from the Arc Tennessee letting us know that the family support budget section is ultimately maybe about to be voted off of the budget <laugh>.
(09:24):
So it was really happy day to know that our family was gonna be getting some more support. And then a couple weeks later, it was devastating to hear that legislators may be choosing to eradicate that from the state budget. And so I saw it as an opportunity to go meet our local representative. And when we did, actually took Uriah with me and he got to wear his new orthotics <laugh>, and I think I brought the invoice of the little plastic orthotics because it would really blow your mind how expensive these things are. But they're so needed. And that's just one little facet of an example of just the different costs, but also the different responsibilities families have. It's an evolving journey to mold and modify navigating a life with a disability. So his needs now at nine years old are different than his needs when he was two.
(10:27):
And so we don't no longer need orthotics, but we need behavioral therapy and support with personal hygiene. And so we're just going through this journey. But I can tell you that that's where the advocacy career started for me and for Uriah. And it was a beautiful thing to be able to take him to meet his own representative. And it was such a great experience. Our representative was just so embracing of Uriah and we just had a great discussion and I got to tell him, We're so looking forward to this support, please don't, please don't vote it out of the budget. And we were able to maintain it in the budget and that felt like such a big victory. And then it kind of opened my eyes to pay a little bit closer attention to the policies that are impacting our family directly. And what I found was that oftentimes the local government was impacting Uriah just as much, if not more than the federal government. So that's where I started paying closer attention is what was being decided in our district and then in our county and then in our state. So I'm really happy to be working for the Arc of Tennessee. I feel like it, it's so complimentary to complimentary to what I wanna do as a profession, but also helping me stay in the loop as a parent as to how I can make the biggest difference.
MARSH NAIDOO (11:50):
So how does the ARC now play into the public policy? Are they keeping an eye of the laws that are being passed on the federal-state level? How is that being done?
DARA BACON (12:04):
Yes. Yeah, great question. So one of the best ways I can answer that is that the Arc US keeps an eye on it at the federal level, the Arc of Tennessee keeps an eye on it at the state level. And for the listeners who are tuning into the podcast I'm just gonna take a moment to encourage you to look up the ARC in your area both the state chapter, and if you have a local chapter, and again, remember that state chapter is gonna be doing more of the legislative advocacy at the state level and then the local chapters are really gonna be able to provide more of those direct services to families and caregivers. But as far as advocacy goes depending on what level you really wanna pay attention to, you can pay attention to all of them. You can track all of them, but the ARC is basically the organization that's gonna help you stay connected and keeping those advocacy opportunities in front of you so they can let you know.
(13:01):
It's almost like we do the pre-sorting for families and for individuals. We keep an eye on the legislation that's gonna impact our population. We're also leading the charge when it comes to maybe proposing a bill that would positively impact the community the disability community. And so one of the ways we do that here, we actually have a public policy call that's open to the public for anyone to join when legislative the legislative assembly is in session here in Tennessee, and families can join in on that. We're hoping to cater our social media campaign and sending out alerts to families and post regarding what's up during legislative assembly. So we're trying to diversify how we're getting in touch with families who are impacted. So that's what we do at the state level. Now, the chapters can also let you know what's being decided at more of the local level. So we're kind of like a funnel of information. If you get connected with us, we're gonna continue to connect you with the public policy changes or suggestions that are coming down the pipe. And then you can kind of filter from there what you wanna get involved with, what's important to you, things like that. Does that make sense, Marsh?
MARSH NAIDOO (14:20):
Absolutely. Tell me a little bit about the programs that you guys have in place that may help individuals with disabilities through the lifespan.
DARA BACON (14:36):
Sure, sure. So the Arc Tennessee, we have several programs in place that pretty much serve and support individuals with disabilities and their families throughout the entire lifespan. So the ARC should have the reputation of being able to assist throughout an entire individual's life. It's not just in the adult. That's where we've earned our reputation. Hard and true in the years of advocacy, especially in that adult transition when someone is transferring out of a school and into adulthood, The ARC is very involved in that transition. But reality is the Arc, Tennessee, we actually just launched in the last year our family engagement team, and we secured a grant through the Department of Education to offer special education supports for families and teachers in the exceptional education field. And that goes from north, south, east, and west all over the state. We have eight different regional areas that we have family engagement specialists, and they go to schools, they support the teachers, they are at the school fairs and just providing the information and aligning resources is what they're really capable of doing.
(16:01):
So that's one way that we support the school ages during the transition from school to adulthood, one of our programs that we just recently launched that was spearheaded by the Art and the Council on Developmental Disabilities as well as Disability Rights, Tennessee. So three big collaborative organizations working to pave the way for a trail blazing program that isn't really replicated anywhere throughout the nation right now. And so we launched what's called the Tennessee Center for Decision Making Support. And that is a online resource, but also a team of individuals that can assist families in navigating how to best support someone with a disability who's becoming of age and maturity that may need extra or additional supports to be able to make decisions on their own or just understanding and I guess assessing a person's ability to make those decisions and what it looks like to foster and grow that ability to where they can live as independently as possible.
(17:12):
But the beautiful thing about the Center for Decision Making support, and one thing that I'm really proud of with it, thinking back to my Aunt Hettie, <laugh> Hedy needed a lot more support than most, and there shouldn't be any shame and what level of support a person needs, but there should be a lot of intentionality as to coming to the decision of what level of support an individual needs. And so this website that we have worked hard to create this online resource is really written in plain language and neutral language. This is not a place to come to feel judged or insecure about having to need more support or less support. There's no right amount of support, but we wanted to facilitate the discussion about what is supported decision-making and how can we help families understand that that can even start at school age when someone is a minor, and how can we increase a person's ability to make decisions on their own and for themselves or having the support of their family and their core support team.
(18:18):
So it's just an unbiased place to go for great information that's written in an easy to understand language. And what's beautiful about both of these resources, the Family Engagement Resources, as well as the Center for Decision Making support is that and the Arc Tennessee's website are all virtually accessible. So if you go to our website and click on the accessibility and language button, you can actually have all of our content translated into a hundred different languages instantly. And you can also modify it based on visual or hearing or learning disabilities to be able to receive the information. So we're trying to bring down the walls. We work so hard in the 1970s to make headways with the ADA, and now it's like we've done what we can to make the physical barriers for people with disabilities not really exist.
MARSH NAIDOO (19:16):
Now we need to focus in on the digital barriers.
DARA BACON (19:20):
Correct? Correct. So we've tried to be very intentional with the virtual accessibility of these resources and reaching families even that don't even have internet. How do we still reach people who are not connected on the web to get the information they need, especially in some of these rural communities, which as you know, is really important to me, having come from a small town in Kentucky. So I hope that answered the question.
MARSH NAIDOO (19:47):
Absolutely Dara. Now, how can we learn more about, for example, if there's a local chapter, what would you recommend that we do? How do we source more information about the advocacy? What's opportunities? Yeah, opportunities.
DARA BACON (20:09):
Yeah! Well one thing you can do if you visit the Arc US website, the Arc of the United States it will actually tell you where the chapters are in your area and what your state chapter is. So my first initial thought is to if you're not in Tennessee, of course you can visit tharctn.org to figure out everything available in Tennessee. But if you're just happen to be in any of the other states, you can go to the ARC of the United States and look up the direct contact information for all of your local and state chapters. And then every, most, every ARC has a public policy section, either on their website or on their agenda. And so just getting in touch with the ARC in one capacity or another to look at those public policy initiatives. I know the ARC US does a really great job of posting their public policy initiatives so you can learn in an instant what's on their agenda, what they're keeping an eye on.
(21:09):
I know COVID-19 is a big platform that they're paying attention to right now and what's available to the essential workers of the disability community, otherwise known as direct support professionals. So you'll most likely find information like that on their page right now, along with a lot of other initiatives that they're keeping track of. So that's an immediate way to do that. I would also encourage you, if you're reaching out to your state or local art chapter, see what they offer in the ways of being alerted or notified regarding certain legislative efforts and how you can stay connected. So it's a beautiful thing that we're part of a national federation that every chapter operates differently. We all have our own boards and our own law bylaws. So the way in which we go about achieving this mission looks radically different from chapter to chapter. But you can rest assured that public policy is one of our main platforms to be able to inform families and individuals about. So just see what they offer and sign up.
MARSH NAIDOO (22:16):
In terms of parent action, what kind of investment in terms of, for example, time might be needed for parents to advocate and be supported by an organization like the Arc? What type of commitment is needed from parents?
DARA BACON (22:36):
Ooh, that's a great question. I think the best answer I could give you, <laugh>, the completely honest answer is come with an open mind and an open heart and an understanding what is at your capacity to give and get involved. So again, this should be approached as if this is important to you, whatever time, whatever effort you can give it is gonna be and should be well received. I remember when I took Uriah down to meet as a representative. I just remember being I guess especially as a new parent, you think you're the busiest person in the world, <laugh>.
(23:21):
And I remember thinking, if I'm gonna go meet one person, who is the best, most important person for us to meet? And I remember asking that to the director of communications for the ARC at the time, and I got the answer. It was like, Meet your local representative. And I was like, Okay, let's do it. Cuz I think it was going through the House of Representatives at the time for the budget. And so regardless of how much time you have, just be sure to be intentional. And if you don't know how to be intentional, then you can ask. And I think a trusted source to ask about that intentionality is the arc.
MARSH NAIDOO (24:00):
What would be your takeaways to leave us with today there? I think you left us with an awesome one right there. Make sure that you contact your state representative here in the us, but what would be another takeaway that you leave us with?
DARA BACON (24:18):
Oh, that's a great question. Well, that's a really great question. I would say it's all about using people First. Language advocacy's important, and I know we've discussed that so much, but sometimes advocacy starts with a simple conversation or approaching someone with a disability. If you don't have someone in your life with a disability this doesn't need to be an ambiguous population to you. But at the same time, I understand it's kind of hard to go and have a conversation with someone you don't know a lot about or don't know how to start that conversation. And then we often hear people referring to a person with a disability. Oftentimes the disability is put first in the sentence. So for example, I often hear, Oh, your son is he Downs. And when I hear that, I just understand, Oh, they probably don't know what people first language is.
(25:16):
It's clear as a mother to see that my son is so much more than his extra chromosome. But oftentimes we lack the experiences of hearing it phrased in a way that is respectful to the individual, more respectful. So the ARC has it really stated clearly on their website about what people first language is. So I guess the biggest takeaway I could leave you guys with today is thinking that people first language really emphasizes the person, not the disability. And so by placing the person first, the disability is no longer the primary defining characteristic of an individual. And it can be as simple as flipping the order of your words. So instead of a disabled person, you refer to the person as a person with a disability. Instead of saying, Oh, is your son's Downs <laugh>? You can say, Oh, does your son have Down Syndrome?
(26:17):
See, the son came before the Down Syndrome and that he has Down Syndrome doesn't define him as just one part of who he is. And he is pretty awesome. In fact, we joke, we always introduce him as being downright awesome, <laugh>. Cause there is nothing down about it. He is truly like a joy and a privilege to have in our lives. But I love hearing people really acknowledge him as an individual before really recognizing his disability. That's a beautiful thing. And I think if you approach any population with that in mind you're gonna keep your channels of communication open better.
MARSH NAIDOO (27:01):
That is a gem of a takeaway. Thank you so much for your time, and I've enjoyed our chat. And I would encourage you guys to please look at the websites d I will have, if you don't mind repeating those again for our orders. Sure.
DARA BACON (27:19):
So the Arc of Tennessee's website you can find it at www.thearctn.org. And the Center for Decision making support is www.tndecisionmaking.org. And our family engagement is simply tn family engagement.com
MARSH NAIDOO (27:45):
Dar.
DARA BACON (27:46):
So check them out <laugh>
MARSH NAIDOO (27:48):
Guys, until we see you the next time. As always, remember, get the top of your mountain. This is Marsh Naidoo signing off.