Title:
Unlocking Change: Sarah Crawford’s Take on Disability, Politics & Advocacy
Subtitle:
Insights into the Intersection of Disability Rights and Political Change
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.
Let’s go.
Welcome back to Pushing Forward with Alycia. I am so excited to welcome a powerhouse to the show today. Her name is Sarah Crawford. She is a dedicated leader, whose career has been filled with advocacy and service and innovation in supporting individuals with intellectual and developmental disabilities.
Sarah is the CEO of TLC. She served as the national program director for Single Stop, connecting individuals with vital Federal and State resources. Love it. Since 2021, she has also served in the North Carolina General Assembly as a state senator, and now a House representative. Big time. And under her leadership at TLC, she’s pioneered new ways to provide community and onsite care for individuals with IDD, and has a ton of experience with the community.
Thank you so much for all of the work that you’re doing. This is incredible. It is my pleasure to meet you.
Sarah Crawford: It is my pleasure to be here with you. Thank you so much for taking the time and letting me be on the show.
Alycia Anderson: I’ve been doing a lot of digging and all of the work that you’re doing, it’s absolutely incredible. We need so many more people like you advocating and creating space, programs, and all of it. So first and foremost, thank you for just caring and doing the work. I love to start the show, if you don’t mind, if we could get a little personal, I wanna learn first about your background.
Your why, how this all began, where you come from. Can you give us a little bit of a peek into the history of your life and what got you to this point?
Sarah Crawford: Gosh, you said how much time do we have? No, I’m kidding. First, thank you again so much for having me on the show. I’m so honored to be here and share more about what we’re doing at TLC, and appreciate the question about how I got here. I have always been somebody, I was raised in a household where service was very important.
My grandfather was a minister. My mom is a retired public school teacher. My dad worked in the environmental community for the state, eventually the state of North Carolina, and did some other things as well. And I just was always taught that when we have an opportunity to serve, we need to take it.
And so that has guided me throughout my entire career, and going back even to high school and college. And it really was in college where I started to understand that when government is working really well, it can work really well for the people who need it the most. And when it’s not, it can be very detrimental.
And so when I was in college, I actually got my first job in government. I began working for a member of Congress, first as an intern, and then ended up getting a job with then-Congressman David Price. And I worked in constituent services, and I got to see, really firsthand, what everyday people were dealing with.
And I worked in the areas of Social Security, disability insurance. I worked in the areas of Medicare and Medicaid, to the extent that the federal government would have something to do with that. And I heard from people, whose lives were literally on the line, waiting for their benefits. Trying to cut through the red tape of what can be the federal government.
And it was my job to help them cut that red tape and get access to the supports that they needed, so they could get the services that they needed. And that really led me into eventually working in nonprofits. I’ve been in nonprofits for the past 20 years, mostly where health and human services intersects. Government and policy has been most of what my career has been about. And ended up becoming CEO at TLC, founded as Tammy Lynn Center for Developmental Disabilities, back at the end of 2020. We can unpack that if you want to, about coming into a long-term care facility, in the middle of a global pandemic, andreally found my place there.
And now obviously I’m working in both government and in nonprofits. So it’s been really just an interesting path, and what I’ve tried to do along my whole path is just lean into the opportunities as they presented themselves, if it made sense.
Alycia Anderson: That’s inspiring right there. I think for anybody growing their career is leaning into the opportunities as they present themselves. ‘Cause I know with my own career in life too, when you lean into that stuff, the paths open up. You’re like, “Oh, I’m seeing the little breadcrumbs and this is all connecting.” Nonprofit and government, what a beautiful marriage, and how needed and necessary it is for both to understand one another. So, I would assume you understand the importance of the need of us as humans, basically. So that’s incredible. I know your journey with TLC has been long, and you’ve had a couple different roles. I think you left for a little bit.
You came back. Talk a little bit about, if you can, and you don’t mind, what TLC is specifically, for listeners that might not know, and talk to us about your career in that space.
Sarah Crawford: Thank you so much. So TLC, as I mentioned, founded as Tammy Lynn Center for Developmental Disabilities, is a nonprofit organization that serves children and adults with special needs and their families. Our mission is to empower individuals of all abilities to live their fullest life. And we work really hard at that every day. I was once telling somebody about all of the services that we provide and they stopped me. They said, “Maybe it would be easier if you said what you didn’t do here at TLC.” We really try to be an organization that works to meet the needs of folks as they come to us. And if we’re not the right place, we work to get them a referral to the right agency or other nonprofit that can meet their needs.
But really from birth throughout life, we try to be there for families. We’re probably best known for our residential services. We do provide residential services for individuals, who have severe and profound disabilities, who need total personal care. We have residential facilities for 30 on our campus, and then we have four group homes we operate in the community that are for individuals, adults who are able to live a little bit more independently, but still need that personal support and that transportation help with daily living activities. But it really is such a huge support to families because when you have a child with a special need, it impacts the entire family.
It doesn’t just impact that child. It doesn’t just impact Mom or Dad. Because a lot of times what happens is mom or dad have to put all of their care into taking care of the individual with those special needs, which means other children in the household might not be getting what they need. You might have parents who are missing soccer games or other band activities.
I’m a mom, I’ve got two daughters, and we have gymnastics and band. I often used to think about when my girls were little, they’re 14 and 16 now, but when they were little, I used to really plot hard about how can I get to the grocery store before I have to pick them up from daycare. Then I would think the families we serve, they have to deal with all of that and a child that may have sensory challenges, or in a wheelchair, or with, medical needs that makes that 10 times or a hundred times more difficult. Not to mention all the other people that may be in that household.
Really providing those residential supports. What I like to tell people is that we allow Mom and Dad to focus on being Mom and Dad. And not therapists, doctor, nurse, around-the-clock caregiver, and whatever else. We really work to give families their lives back and allow them to be families and to focus on being parents to that child and everybody else in the household that may need their care. In addition to residential supports, we have early childhood intervention, therapy supports, outpatient therapy, group therapy. We have a day program. We do care navigation. And all in all, what started as three families 56 years ago is now serving more than 2000 families in the greater Raleigh area in North Carolina.
Alycia Anderson: Wow, that’s incredible. Can you give an example, like a story of how this support has helped the family exist and still function as a, I’m air quoting, typical family. What’s a real world example of how this works?
Sarah Crawford: Yeah, absolutely. We have a young woman who lives with us. Her name is Haley, and when she was born, her parents were told that her diagnosis was incompatible with life. That’s what her family was told. And as a mom, I can’t imagine giving birth and then being told your child has significant need, is incompatible life, and probably won’t make it past the age of five, which is what this family was told. And you don’t go to the hospital and automatically just get a list of providers that might be able to help you. It’s a long journey to navigate to the services that your child need. It’s a long journey to navigate to get that specific diagnosis, so that your child can even get the services that they so desperately need.
And we can talk more in depth about that as well. But Haley came, initially, to our preschool program. She came to our preschool, an inclusive preschool. She ended up going to school at TLC, which we provided a school for children, grades kindergarten through 12th grade, to support all of the needs of those individuals.
And eventually, Haley came to live with us. Haley, a couple of years ago, celebrated her 30th birthday.
Alycia Anderson: Oh, wow.
Sarah Crawford: And this is a child, whose parents were told she was incompatible with life and probably wouldn’t make it past five. And now she is into her thirties. She’s engaged in the community. She has friends that she lives with.
She gets to go on outings. She is living a full life. People come to visit her. She goes out to visit people Her parents are able to focus on all the love that they can give her as parents, and not have to focus on all the medical care that she needs because we provide that. I think about this family all the time when I think about the great services that our staff are providing every day, because we really do give families, their lives back. I’ll tell another very quick story. We had another resident who lived with us. Her name was Meredith, and her family was bound and determined to keep her at home.
They did not want her to come live at a residential facility. They were gonna keep her at home. They’re gonna provide her care at home, and their son started acting out in school. He was getting bad grades. He was getting in trouble because he wasn’t getting attention. He is a teenage boy and they finally decided, “You know what? We need help. We can’t do this on our own.” And they brought Meredith to TLC, where she lived for the remainder of her life. She has unfortunately passed away now, but we gave that family their life back so they could give the care and attention to their son that he so desperately needed. And some of his hardest times as a young adolescent boy, as sometimes happens. I have a brother. We’ve been through that with our own family. That’s what we do for families.
Alycia Anderson: Yeah, and I think it sounds like that partnership families are looking for when they’re in those stages of where do we get the resources that we need? How do we get the support that we need? You said we can jump into services, and the need, where we’re at today, and where we need to go.
Sarah Crawford: Yeah. So in North Carolina, there are 19,000 people on what is called The Registry of Unmet Need. There are 19,000 people that are waiting for the services like TLC provides. It might be residential services, it could be therapy services, it could be diagnostic assessments, it could be any number of things. But 19,000 people and their families, some of those people have been on the waiting list for more than a decade waiting for services. So we have a lot of work to do and North Carolina isn’t unique. This is going on in states across the country, and what needs to happen is a lot of advocacy done at the state level to help people understand why we need to fund these services, why these services are critical. How do we fund these services?
How do we do it creatively, so that everybody can get something because I think it’s something like 65% of the people on that wait list are getting no services at all. None. And we have some advocacy to do, like I said, at the state level, to release some funding to open up more services to ensure that these services are funded the way that they need to. So as a nonprofit organization, we get reimbursed through Medicaid. But a hundred percent of our costs are not covered by Medicaid, which means we have to raise about a million dollars a year just to cover the basic care that we wanna provide our individuals. And if we wanna do anything extra, we have to raise additional funds from that.
There’s huge need across the country. There’s certainly huge need right here in North Carolina. And our families deserve to have the supports that they need, and they deserve the right kind of care for their child.
Alycia Anderson: Where’s the gap there? Is it education? It’s obviously funding. That’s what I hear. How, and what are these families doing in the interim? What are they doing?
Sarah Crawford: Yeah. I think the biggest part of the gap is funding. But I also think that there’s an education piece as well. The state has a lot of priorities. The state, we have to pay for education. We have to pay for roads, we have to pay for any number of things.
Police, fire, all of these basic needs that the government has to pay for. But we cannot leave our most vulnerable behind. I don’t think there’s a lot of, unless you’ve been in this work or seen it firsthand, lived experience to understand what these families are really going through.
So funding some education as well, as I mentioned. And what families are doing in the meantime is cobbling together help from a number of different places. We have families, parents who are quitting jobs to be the primary caretaker of their loved one, their son or daughter who has special needs. We have families that are relying on grandparents and aunts and uncles and neighbors. And what we know about children with special needs is that you can’t just call the neighbor down the street. Because of that child’s medical needs or behavioral needs, whatever they need, you need somebody specially trained.
And we have to make sure, too, that we are paying our direct care workers what they need to make to stay in these jobs, because it is very difficult when you are working a job that’s making $12 or $15 an hour. That’s hard. It’s labor intense, it’s emotionally intensive, and you can go down the street and work at McDonald’s for $18 or more an hour.
So we really have to value the workers in this work.
Alycia Anderson: I think caregiver advocacy is obviously very important. It’s been in the work that I do. I am a speaker. I speak to a lot of big global companies and there’s been this, I don’t wanna say newer, but it’s definitely been a more prioritized initiative to have employee resource groups that are just focused on caregivers and what they’re going through, and bringing community in together from that standpoint, which I think is really important and I agree with you.
They need to be paid a lot more. It’s not an easy job and it’s got a lot of layers of stress to it for sure. Yeah, that’s really important. How do you balance, being the CEO of TLC, serving on North Carolina’s General Assembly, like doing all the things that you do?
Where do you get this fire from?
Sarah Crawford: That’s a great question, in terms of the balance. I think there are definitely days that I get it right and I’m doing great, and there are days when I feel like I’m dropping all the balls. The thing that’s important to understand is that most of the balls that we’re juggling, they’re made outta rubber. If I drop one, it’s gonna bounce right back up and I can catch it, put it right back in my rhythm. What’s important is to understand which ones are the crystal balls that you can’t drop. And so I really try hard to prioritize in the right ways, and that includes my family. Definitely our daughters, it includes their activities, but there is a lot to juggle and it takes really needing to be present where you are in that moment. Right?
So when I’m at TLC and I’m in that CEO role, that is what I’m doing. When I’m at the General Assembly in the legislative role, that is what I’m doing. When I’m at home, I’m a mom. Obviously, I’m never, not one of those things. I’m those things all at the same time. And a ball gets thrown at you, you gotta decide, is this one crystal? Do I need to catch it? Or can I set that one down for a minute? And so, it is a juggling act. I have an amazing team at TLC, an amazing team at home. And an amazing legislative assistant at the legislature that really help manage the day-to-day things, so that I can focus on the most important priorities.
Where that fire comes from. I think it really goes back to my work in the congressional office and constituent services, and really seeing the need firsthand of what’s happening in our community, what our families need, what our families need to thrive. And I’m really motivated by the verse in Isaiah that says, “Then I heard the voice of the Lord saying, whom shall I send?” And I answered, send me. And I think, when we have the opportunity to serve and service looks like a lot of different things, it doesn’t always have to be CEO or legislator or some leadership position. Service can be any number of things. But when we’re called to serve and we can do it, I think we have an obligation to answer that call.
Alycia Anderson: That’s so beautiful and I totally agree. And that call to serve. If you lean into it, really can open up some major impact. Even if it’s just from the smallest bit of education or exposure on something that someone didn’t know before. And in the IDD community, I feel like that is a major gap that needs a lot of focus.
So that’s really beautiful. Congratulations, like on all of that work. It’s amazing. So from a policy standpoint, can we talk about that a little bit? What do we need today in 2025? What do we need our community leaders to know? What do we need our politicians to realize? What do we need today in this year and beyond?
Sarah Crawford: The policy side of things is so difficult right now. We’re living in a world where even conversations are very hard.
Alycia Anderson: Yeah.
Sarah Crawford: I try really hard in my legislative role to follow three rules. I’ve wrote three rules for myself and I said, “This is how I’m gonna function here.” And the first one is control what I can control. I serve in the minority party in the North Carolina General Assembly, so I don’t have control over a whole lot of things, over the schedule, or necessarily what bills are moving. And I try to just focus on the controllables. My second one is do what I can to focus on the things I can influence. And so for me, what that looks like is I have built a lot of very strong bipartisan relationships. Folks across the other side of the aisle that are interested in working on healthcare policy and policy specific to individuals with intellectual and developmental disabilities or behavioral health or mental health challenges.
And so I have formed friendships. I’ve worked hard to move legislation forward. Again, it’s might not be anything you read about in the paper, but it’s meaningful policy. That really makes a difference for the people that are impacted. A couple years ago we were able to save services for adult vocational programs that were on the verge of being on the chopping block.
And we worked in a bipartisan effort to save those programs which provide. Thousands of people with meaningful day, meaningful work with respite care and provide those families with the support they need. And so I was really proud to be a part of that work. And then the third thing I try to do is, do my part to stand up against the things that I don’t think are right for North Carolina families.
And sometimes that looks like just hitting my no button in the legislature. And sometimes it’s, it’s standing up and speaking. But I try really hard in all of that, not to lob grenades. And I think, when we think about what we need in government, we need more people who are just willing to sit down and have conversations, know when to agree to disagree and how to push through to get good things done.
Because I think there’s a lot more of that happening than what you might see on the news. And I think that is what I would like our community to know that. That there are things that are working very well in government. Not all of them. We have a lot of work to do. But we need more of that, more people who are willing to have conversations.
And I think, when I think about IDD specific policy. I think it really is about learning. When I talk to groups all the time about how important it is to put your voice in the room. And we only know what we know. There’s 170 of us in the North Carolina General Assembly, 50 senators, 120 House members.
We only know what we know, and until you come tell us, we may or may not know what you have to say. And so I just spoke to a group. Of advocates in the IDD space recently, a few weeks ago, and I talked to them just about the importance of showing up, the importance of telling their story, their lived experience, because they’re the ones closest to how the policies actually impact them.
And when we know better, we do better. And so that, that’s what I would say in this space.
Alycia Anderson: Make sure your voice is in the room. I love it. I totally agree. And that’s incredible. So what is the future, like North Star, for the work that you’re doing within TLC, within your government role? What is your wishlist on where we need to get?
Sarah Crawford: My wishlist is that every single person who is living with IDD needs to have the opportunity to work where they wanna work. If they choose to work. They need to have that choice. They need to have a choice about where they live, and that choice needs to be inclusive in the community. And we need to make sure that we value our.
Direct care workers for the work that they’re doing, because we can’t, you know, we talk a lot about, we want people to live as independently as possible. When you live as independently as possible, you’re oftentimes, if you are somebody who has IDD and needs a certain level of personal support, you’re relying on a worker to show up and help you do that.
And if your worker doesn’t show up, you may or may not have the ability to call and say, Hey, my worker didn’t show up today. What do I do? And so we, we have to value the people that are in this work because they make such a huge and meaningful difference to allow people with IDD to live as inclusively as possible.
And that’s what I want, and that’s what we’re really working to do at TLC. One of the things that I came in to do in 2020 when I returned back to the organization. As CEO is to really work on our culture and our core values around our staff. COVID had really had really created an isolated situation for our workers.
’cause folks weren’t allowed to move between buildings. We weren’t having a lot of visitations. There was just a lot we couldn’t do. And so we had to do a lot to rebuild culture and core values. We had staff that left. We were paying a bunch of money in temp agency and overtime just to make sure we had coverage and it wasn’t sustainable.
And so we took a deep knee bend. We invested in culture and core values. We worked on ways to value our staff, both through increased pay, but also in how we show up for them. And it’s totally changed. Changed what we’re able to do. When I started in 2020, we were serving about 400 families, and we’ve grown to now serving over 2000 families.
Alycia Anderson: That’s incredible.
Sarah Crawford: It’s not because of me, right? It’s because of the work we collectively did together to really pour into our staff who are doing the hard work. And because of that, we’ve been able to grow our services. We’ve been able to touch more lives and that’s what we really need to do. And I, want to take this model that built at TLC of investing in our staff, our residents village, that we’ve.
We’ve created through the, a brand new renovate, a brand new residential facility, and renovated homes that we are working on right now. And I wanna take that across the state because there are agencies that are really struggling to provide these services. Because we just simply, the resources aren’t always there to value the staff, and so we’ve gotta do that first.
We’ve gotta fix that first so that we can be here for the long term to provide all of those inclusive opportunities for people who need it. We’ve got 350 people moving into the state of North Carolina every day.
Alycia Anderson: Wow.
I think that is important that models could go across the country, not just the state. Because I agree, if the workers are taken care of, they’re happy, they feel like they’re building their careers, and they’re fulfilled in that way. Like the sky is much more the limit, so that’s amazing. Where do families find you? How do they donate? How do we get involved? How do we support you?
Sarah Crawford: So people can find us online at n Ctlc as in North Carolina, Tammy Lynn Center, nnc tlc.org. You can learn about all of our services there. You can make a donation. We’ve got so many ways to participate. We’ve got events that we do. We raise many constantly for the annual fund. And then we are closing in on the end of a capital campaign.
For the residence village, we have not built a new residence home in over 30 years, and we just built a brand new one that opened earlier in 2025. And we are renovating our existing ones because everyone deserves to have. To have something new, to have something that’s theirs to be in a space that really meets their needs.
And so that’s what we’re trying to do through technology and through individualization and personalization in these homes. And so we invite folks to certainly support all of these efforts, annual fund events or this campaign to really help us deliver the homes that the residents who’ve come to call TLC Home deliver what they deserve.
Alycia Anderson: Amazing. That’s so beautiful. Congratulations on making such an impact. Honestly, you and your team, it sounds like you’ve got a lovely environment that everybody is pushing forward some really beautiful initiative.
Sarah Crawford: Very lucky. Thank you.
Alycia Anderson: Yeah, and congratulations on being a boss. I love it. Okay, so did we miss anything?
Sarah Crawford: Ooh. I don’t think so. I feel like we’ve covered a lot.
Alycia Anderson: We are gonna leave all your information links in the show notes so people can easily access and donate, get involved, all of the good things. We like to leave the show with a pushing forward moment, a little inspiration mantra, something you live by. You already gave us some nuggets, so I don’t know.
You gonna have to dig again, find something else. But could you have anything that you can leave with our community?
Sarah Crawford: Yeah, you know, I already mentioned the verse from Isaiah that really just drives me every day. But I think one thing that I’ll add is that, this pushing forward moment, a belief that I truly have is that there’s possibility in every moment, even the hardest ones, and particularly in the work of IDD, whether you’re working with an individual on their goals.
Whether you’re working to build new services or working to get policy passed sometimes it feels like you’re not moving. Sometimes, in fact, it feels like you’re moving backwards. But what I’ve learned in my work and certainly in my life is that, just one small thing, an idea, a connection, a shared story can really change everything.
And when the challenges feel overwhelming, I try to remind myself that. I might be just one step away from something that makes the impossible possible and that really keeps me moving forward. And I heard somebody tell me years ago that every no is one no closer to a yes. And I think that really wraps up this last thought that I have.
Alycia Anderson: That’s beautiful. Sarah, thank you so much for sharing space with me today and sharing your story and just all the work that you’re doing. We need so many more duplicates of you, so we need to find a way to make that happen. I truly appreciate you wanting to come on the show and share your story, so thank you so much.
It’s been a pleasure to meet.
Sarah Crawford: This has been absolutely my pleasure. Thank you for the time, and thank you for sharing the story of our beautiful work that we do.
Alycia Anderson: Absolutely, and thank you for our community for showing up again. This has been another beautiful episode of Pushing Forward with Alycia and Sarah, and that is how we roll on this podcast. We will see you next time.