Serving Families in Crisis: A Conversation with Breanna Kelly-Higgs LCSW, BCBA

Summary

Breanna Kelly, a licensed social worker and BCBA, shares her journey into the field of autism and her passion for supporting individuals with co-occurring conditions. She emphasizes the importance of understanding and acknowledging the experiences and needs of individuals with disabilities, as well as the significance of cultural competence in providing effective care. Breanna discusses the challenges within the medical system and the need for collaboration and holistic approaches to support individuals with autism and mental health needs. She also highlights the importance of caregiver training and empowerment. Overall, Breanna advocates for systemic changes and increased resources to improve the lives of individuals with autism and co-occurring conditions.

Takeaways

Understanding and acknowledging the experiences and needs of individuals with disabilities is crucial in providing effective care.

Cultural competence and relevance are important in supporting individuals from diverse backgrounds.

The medical system needs reform to better support individuals with co-occurring conditions.

Caregiver training and empowerment are essential in helping families navigate the challenges of raising a child with autism.

Collaboration and holistic approaches are needed to provide comprehensive care for individuals with autism and mental health needs.

Increased resources and systemic changes are necessary to improve the lives of individuals with autism and co-occurring conditions.

Chapters

00:00 Introduction and Background

02:01 Personal Connection and Early Experiences

08:49 Challenges within the Medical System

12:02 Cultural Competence and Trauma-Informed Care

19:00 Empowering Caregivers through Training

23:33 Meeting Caregivers Where They Are

30:16 Supporting Families and Building Relationships

34:05 Reforming the Medical System

41:38 Connecting with Others and Finding Resources

Transcript

Lola Dada-Olley (00:02)

Brianna Kelly, thank you. Thank you so much for visiting us today on the Not Your Mama's Autism Podcast.

Breanna (00:11)

Thank you for having me. I'm excited.

Lola Dada-Olley (00:16)

Me too, me too. I just know you're going to drop the nuggets. The nuggets shall have nuggets. So with that in mind, let's learn a little bit more about you. So you are a true multi -hyphenate. You are a licensed social worker. You're a BCBA. Those not familiar with the term, board certified behavior analyst, and the owner in your spare time of synergy behavioral consulting.

Synergy behavioral consulting. But before we get to all these wonderful things, like what you're currently doing now, let's start, let's go back a little bit. Let's start from the beginning. What made you enter this field? Like, do you have a personal connection?

Breanna (00:46)

Yeah.

So it goes back to the early 2000s. And so I was in high school and a freshman in high school actually, and I got invited over to this party that this Christian club was having at my school. And it was at an attached school, which I now know was an alternative school. And it had kids with severely profound, severe and profound disabilities, quote unquote behaviors. There were

pregnant girls. at that time, this was scary to me because we would only see these individuals like in between classes. And I went over there and the cha -cha slide, I think was out around that time. And we had the best time ever. Like doing the cha -cha slide, doing all the dances. And I will never forget, cause I was so fearful going over there. Like I just, didn't, I didn't know what to expect.

wow, these people are just like me. And it was the bond within the cha -cha slides and all the dances. I was like, these people are just like me. Why was I scared? And that was the catalyst for me. And so I then joined an organization called Best Buddies, which is an international organization that partners at all levels, middle school, high school, college.

individuals with intellectual disabilities with peers and we do all these activities. And so I joined that organization. I did that all through high school, went to college. didn't have a chat where we had a chapter, but it wasn't active and I lived it. I was like a college nonprofit person. had, we partnered with a nearby school. And now I think about it. I don't know if we have a school here like that,

It was specifically, I think, like kindergarten through 12th grade of kids, disabled kids. They had a post -secondary. Yeah, Tampa. I'm from Tampa. I went to school at Tallahassee. So I was, you know, small college town and I was like, this is what I want to do. Like I woke up every day. I mean, I was in college. I did the school thing, but this was my

Lola Dada-Olley (03:03)

Where did you grow up? You live in Georgia now, right? Okay, Tampa,

Breanna (03:24)

So I wanted to be a doctor and like halfway through I was like, this is not what I wanna do. I wanna support these individuals and that led me to social work. And in college are really cool. We had a cool assignment. So this is my personal connection. We had to interview like an elder. I interviewed my great grandmother, my grandmother's mother and learned that my great uncle,

And back then they had a lot of kids. They had a lot of kids. And was the whole that she raised them by herself. And she had a set of twins. And my Uncle Kenny has cerebral palsy. He probably would have been diagnosed with lots of other things now. He was taken from her. So the state tricked her into signing over her rights. And he was put in an institution.

So this was 50s maybe. And she told me how they stole him back. And when I heard this story, I was like, okay, God, this is what you want me to do. This is why I'm here. And so she talks about him being in the floor and feces and they had to break him out and she had to fight. There was legal fights. And I just knew, I was like, this is what I'm supposed to be doing. So that led to social work.

Yeah, so that's kind of the origin story. And I just keep getting these signs that I'm where I'm supposed to be, if that makes sense. Yeah, and now I have lots of personal connections, family members who are autistic or have different disabilities. My mother had a pretty, who passed away about 10 years ago, profound medical disability as well. And so it's kind of

Lola Dada-Olley (04:58)

Absolutely.

Breanna (05:17)

been where I

Lola Dada-Olley (05:23)

Wow, that story about you're literally your elders. It's the generational story that you have.

Breanna (05:34)

Mm -hmm. And it keeps coming up. So that's how I know it's not, you know, it wasn't a choice. I don't think I have a choice. I'm in a transition phase right now, but I know where I will be. I just don't know what it'll look like. So we'll see. I'm excited to see what's next.

Lola Dada-Olley (05:54)

Yeah, put a pin in that because that's very intriguing. Let's kind of walk through. So you have a graduate degree. And so when you were studying your graduate and your graduate program, what were you focused on? What was your specialization? And is it at all linked to what your focus is

Breanna (05:57)

Yeah.

Yeah, so I came to Georgia specifically for macro based social work. So systems levels change, organizational nonprofit, and that was as a result of the work I did with that organization in college. So I intended to be doing that nonprofit work. Like that's what I thought I would be doing. And then I just ended up in different unique spaces. I'm a graduate of the LEND program.

which is leadership, education, and neural developmental disabilities training program. And so that totally shifted my perspective. And it's an interdisciplinary cohort. Your colleagues are professionals. They're people with lived experience. That changed my trajectory. And then I started working for the university. And so I got to do all this traveling and training, and I loved that. And then transition to crisis services, which I never

thought I never thought I would be there, but we were serving people in the most vulnerable spaces, like for someone to have to call for emergency help or, you know, to be at a point where they can't support their loved one. And so that kind of shaped that for me. And it's not something that I thought I would be doing, but being in those spaces got me to understand some of the challenges of our systems.

Lola Dada-Olley (07:40)

So when you say crisis intervention, for those who may not be familiar, what do you mean by crisis intervention?

Breanna (07:47)

So in our state, in every state it's different. So if someone is maybe having a psychiatric crisis or behavioral crisis to where their behavior has put them at danger, they put someone else in danger, they may be eloped, they're experiencing psychosis, any type of presentation in which they are unsafe, they can call 911 or they can call the specialized mobile crisis team. And so we would go out and assess, make recommendations.

Some individuals will be removed from the home and we would support them in crisis homes. So this is for folks with those really high acuity needs. it became, you know, was quite interesting at times. Always exciting things, but families needed that level of support and they weren't always comfortable calling first responders. And so we essentially were first responders for some of those individuals.

Lola Dada-Olley (08:49)

What did that experience teach

Breanna (08:52)

Well, I think my brain is forever changed as a result of being in that space and working in psychiatric hospitals. I'm very hyper vigilant now. I'm very empathetic. I'm always checking the scene out. But it taught me a lot about the lack of services in our state. It taught me a lot about what it looks like when families are

and when they have nothing else and when they weren't given support. It taught me a lot about how important it is to teach skills early on and to accept people early on and to get them access to their community early on because a lot of the folks that we saw were, you know, that teenage age where it's like, it's cute anymore and I can't manage it or adults.

Lola Dada-Olley (09:47)

Yeah.

Breanna (09:49)

who, know, quite honestly, they weren't given self autonomy and they're using these distress behaviors to communicate their wants and needs. Or, you know, those folks with the co -occurring mental health and developmental disabilities that we don't know, you know, we don't adequately support, they're just kind of getting bounced around and hospitalized and medicated. And so I just

to look at how the sausage was made, unfortunately. And so it really shapes how I support families now because I've seen this totally other end of it and I try to prevent people from getting there.

Lola Dada-Olley (10:32)

from getting there, So you know how the movie ends, in other words. So you're trying to do your best to prevent where you can.

Breanna (10:42)

Yeah, it's very burdensome to understand the system so intimately. It's painful. Even when tell parents, when parents do all the best things, or caregivers do all the best things, and you're like, hey, when they become an adult, you're going to hit that cliff, right? You're going to hit that cliff. So let's figure out how to do it with the least amount of damage as

Lola Dada-Olley (11:10)

So just to level set for those who may not have heard the term the cliff, I first heard the term the cliff from my son's child psychologist. And it refers to the lack of services the older an individual with disabilities gets. How, just like you said, Breanna, like the way our society is set

When someone's no longer cute, when they've outgrown, know, when that preteen teenager age comes, the resources start to dwindle and it becomes less and less and less. And it leaves families more and more isolated.

So that leads me to you are also well versed in trauma informed care. What is that exactly?

Breanna (12:02)

Yeah, so it's, I like to put it in simplest terms because there's a lot of discussion around this right now. But for me, it's just simply understanding and acknowledging that people have had learning histories and experiences and some may not be ideals, some may be aversive and that those experiences shape how they navigate the world. And so as I'm training,

other colleagues or professionals, sometimes I like to reframe it and tell them to ask not what did you do, but what happened to you. Because a lot of times when we're looking at something, we're trained to look at it from a deficit model or a symptomatic perspective. I tell people to be profoundly curious about that person's history.

about their learning experience and they may not be able to tell us and we may not ever be able to find out but let's kind of support them in a way and so we are not making it worse and that we also acknowledge that what we're seeing may be a result of something else and maybe we need to create a space so they feel safe to be who they

Lola Dada-Olley (13:18)

So you going beyond the behavior like this, you sit at the intersection of social work and applied behavior analysis. How do you think that helps shape your practice and helps shape what you do

Breanna (13:38)

So social work is my lens, right? And not only just social work, but a Black African -centered social work perspective. And I think that's so important because we had to unlearn a lot of stuff in school as well. And I'm a proud member of the National Association of Black Social Workers. And I think they grew me up professionally and as a young adult. And so really centering African -centered values,

autonomy, cooperative economics. I think that's the lens in which I look at the world. And so applied behavior analysis is kind of a specialty, a specialty, I guess, set of skills that I think can be helpful. But I always kind of fall back on that humanistic approach that social work gives me. And it can be challenging because ABA does not have, we're getting a lot of pushback right now.

and meaningfully so, rightfully so on some of it. But I also at times feel like an outcast in ABA because I am the one who is coming from this kind of comprehensive ecological perspective and we are not historically taught that. So I'm having to carve out spaces and navigate sometimes conversations with colleagues who don't necessarily agree with that.

wider lens, I guess. But we're making it work, I guess.

Lola Dada-Olley (15:13)

Hmm. That was loaded. Let's dig deeper. Let's dig deeper. You touched upon what is a buzzword to some, what is an integral part of their practice for others. What is culturally competent care and what does that mean to

Breanna (15:35)

So I like to think about kind of cultural relevance, because I don't ever think we can become competent and that's contextual. When I think about cultural relevance is how is it relevant or socially meaningful to whoever you're supporting. And that can change. That can change based on what region you live in and what your background is. And so having the desire.

in the curiosity to try to pair whatever you're doing with whatever this person's need is, whether that's, you know, disability culture or Black culture, which is not monolithic or regional. So that's kind of how I think about it, is how is it relevant to those who you're serving? I don't ever think we can become competent. And I think I specifically focus on

culturally appropriate services for Black and individuals of African descent because it oftentimes is not considered in intervention spaces, in the medical space. So I find myself being an advocate for that in lots of different ways.

Lola Dada-Olley (16:51)

For those not familiar with culturally competent care, could you provide some examples of a way upon which you would approach the practice differently when you actually take into account the wholeness, the fullness of the person who you're interacting

Breanna (17:11)

So you behind me, you see kind of my books that I keep on the wall and making sure that the folks that I serve see reflections of themselves and whatever materials I'm serving, I'm using to support them. I also think regardless of background is giving up that positional power of being the authority. And so normally when I start working with a family

you're the expert. I have a certain set of skills. You're the expert. So really starting to pour into them, encourage them, build their confidence, because they likely have met. I know what the system does, right? So you've met other people who probably have not done this for you before. And so I'm here to support you. What do we need this to look like? And there can be times when we disagree.

And we will just have to figure out what it looks like. And what's important to you in terms of whatever our goal is? What's important to you? How do we make this meaningful for you? What would motivate you? I think those are all really important things. Honoring people's language and their dialect and not trying to teach them things that are not part of their community.

So when I was working recently with some young teens, young autistic teens, and so I support my staff in talking to them in street language, because they're gonna hear it at school. And so when you talk about social skills training, right, air quotes, their peers are gonna be saying different things. And so we use that language with them so that they've heard it before.

really speaking to a family's fears about approaching the system. And so I enjoy working with particularly black caregivers or couples and acknowledging that they are fearful. And here's why you are probably fearful. And here's the reasons why you probably should be. And here are some examples of what we're going to do.

to maybe mitigate some of these concerns that you have. And so I think those are just kind of general, just speaking to folks like you want to be spoken to, like just kind of basic humanistic things.

Lola Dada-Olley (19:44)

in your personal, professional experience, so the mix of the two, what do you think your field gets right and what do you think still needs to improve when it comes to care for people with co -occurring conditions?

Breanna (20:07)

I think co -occurring is really unique. And when I say co -occurring, because it's used in different spaces, we hear it with substance use. Specifically talking about individuals who have developmental disabilities and mental health needs is, from a systematic perspective, we are not set up to do any of this. So most states have their developmental disability lane and their mental health lane.

you pay for your people and you pay for your people. But we know statistically that if an individual, disabled individual comes in contact with the system at all, they are more likely to experience some type of trauma or aversion or mental health condition as a result of just being, you know, getting services, right? And so one, we have these two siloed things and they don't, the people literally do not talk to each other most times and they don't understand

the needs of the other population. And that was my experience here in Georgia as well, you know, when I worked in a government position. And so just understanding, I think, is where we start. And then looking at how folks get access to services, because there's exclusionary criteria. In my state, if you have a certain developmental disability, you can't get access to mental health support. And that's a lot of the fight that we have right now.

Lola Dada-Olley (21:31)

Hmm...

Breanna (21:35)

So you can't get what you need. then, I'm very passionate about that. I'm talking to mental health providers and they're like, well, autism is their primary diagnosis, so they can't have this. I'm like, they have anxiety and they have sexual abuse and they have this. And so educating those providers that the modality that you use if adapted for those who need it can work.

I think we need more research in those areas as well because a lot of our mental health diagnosing treatment is based on verbal interviews. It's based on the ability to be able to engage in conversation. And so that doesn't work for a lot of folks. And then when we use kind of these behavior management strategies, psychiatric hospitals, or these really restricted levels of care, when we could just support people in meaningful ways,

you know, they wouldn't have to get to a psych hospital if we evaluated them appropriately in the ER and we realized they had GI issues and it wasn't a psychiatric issue or you know, they're being abused. They're not acting out for no reason. So I think a reform in medical, the medical system, our system and access to services would be the best place to start. And a lot of what I do is awareness.

particularly with BCBAs is, hey, this person is communicating something, let's try to figure out what it is. And then a lot of times we figured out and we have nowhere to refer them. So how can we do what we know is right within our scope of practice, essentially.

Lola Dada-Olley (23:20)

You give, so you mentioned training, part of your training is caregiver training. So what aspects do you focus on most and

Breanna (23:33)

It depends on the audience. I enjoy talking about co -occurring diagnoses and just acknowledging that disabled folks have psychiatric needs as well. I enjoy that. I enjoy talking to caregivers and normalizing their experience because a lot of times they feel like they're the only

They are like, Miss Brianna, you wouldn't believe what happens. Well, actually, that's pretty normal. Or that's pretty expected. let's, you know, how can we support it so that you stay mentally well? Let's talk about some of

some of the risk factors or some uniquenesses of having a Black child in this space. And let's also talk about services and supports. And so I really enjoy coaching caregivers on how to advocate for themselves and their child. I really enjoy that because they oftentimes are so defeated and parents are given so much information that's wrong and just teaching them to question it.

I listen to you and your husband talk about insurance, right? Teaching them all of those things, which isn't always traditional ABA or traditional social work, but I would argue that equipping people with skills to get their needs met is actually a great opportunity. So I really enjoy doing

Lola Dada-Olley (25:11)

You certainly take a holistic approach to things. And you're right, the system's very much set up to be in silos, even though we are whole people. Like you and I are two people sitting at multiple intersectionalities, yet society may only view us as one thing, but we are truly, we're all multi -hyphenates in various ways. So.

With that in mind, you know, we're thinking of intersectionality, we're thinking about dichotomy, we're thinking about the layers having the layers, right? When you're giving caregiver training, and these are caregivers, particularly of Black kids, Black or people of color, how do you hold the tension between giving these families hope and also giving them a realistic picture?

of the type of advocacy that is coming ahead of

Breanna (26:15)

So I think it comes from that assessment piece is me really identifying where they are. I've worked with families. I worked in a developmental clinic from like point of diagnosis to adult, you know, caring for our adult siblings. So it depends on where they are at and what they desire. Sometimes we are not in a space. And I had to learn that really early on because I'm so passionate about

I wanted to give all the resources. And that wasn't always great. And so just realizing where they are and what they need. And again, I think that comes from that self -determination piece is I'm going to tell you what I can offer you. I'm going to tell you what I think. And you let me know when you're ready. And we can go as deep into it as we need to. Or we can kind you can say, hey, Ms. Breanna, I can't do this today. OK, that's great.

hey, this is what I can do. And I oftentimes work with single caregiver homes. And so for me, looking at it holistically, right, it could be interpreted by some as, this parent isn't doing this. They're not implementing this. You got to pay the bills. You got to take care of yourself. You got to take care of this kid. You got to do all these things. So my approach is tell me what you can do. And it can be really small.

Let's just start with this one thing. And that's just kind of how I start. So just figuring out where they are and then meeting them where they are. And sometimes I'm not the best fit. we go through, people go through cycles. Some people want to kind of deny it. Some people have different approaches and that's fine. I'm not angry. I can just tell you what I have to give and you make the option. It's your option to choose. So it doesn't always work out and that's okay too.

Lola Dada-Olley (28:11)

So, said you meet the caregivers where they are and depending on the situation, you kind of adjust based on where they are and some caregivers are in denial. I'm glad you brought up the D word. So, knowing that the sooner you can introduce interventions, the better off the outcomes will be later on in the adult versions of these kids.

How do you hold that tension of kind of holding the hand while also letting them know that time is going?

Breanna (28:51)

through relationship building. So like that's where we have to start is from the beginning. So I've already told you, you know, I got a certain set of skills and when you're ready, we can tap into it. And for some folks, before I start talking about intervention or change, I start from this acceptance piece because I feel like a lot of where folks get like a lot of it's the unknown, right?

Lola Dada-Olley (29:12)

Mmm, that's

Breanna (29:18)

Well, sometimes I hear really wild things like, well, some parents are not kind. They're like, she's so weird and I can't do this and she's embarrassing me. Well, let's talk about when your child did this, this is maybe what they were experiencing. If they're open to that. And sometimes it's kind of chipping away, but just starting from there is that understanding piece of like, some parents are blaming themselves, right?

Like I did this or, you know, so I just start from that general education. And it's so interesting because I have a family who I worked with and I met them two, three years ago and she was ready to terminate her parental rights. was, she had, he had been told he wasn't diagnosed till like 12. He had anger issues. He had ODD, he had all of this. She was, she was leaving work.

Last year he was in a school play. This year he's in camp. She sent me pictures. He's in camp. She said, you gave me hope. And what it was is she was like, he's so disrespectful. She didn't understand. was just her. Like your child doesn't understand the social hierarchy of authority. So when he's questioning you, it really is him trying to understand, not him trying to be disrespectful. And

us really working through her understanding her child and actually getting to like him again, because I don't think a lot of parents want to talk about there may be times where you don't actually like your child. And I've had families talking to about that to her saying, I'm hopeful. He's at school. He has friends. He was just in a play and we were all at the play and he did phenomenal. So for her, it started at like understanding that because she thought she had failed him.

And it was just, he had unmet needs and he was a black boy and he got medicated. He got labeled with everything else and she thought she was a bad

Lola Dada-Olley (31:24)

What were some of the incremental steps you employed that allowed this success story to flourish?

Breanna (31:35)

Well, it wasn't just me, it was a team. So I got to work with some staff who, again, that's a relationship, right? They trusted me because this young boy was referred to me from a psych hospital. And a lot of my staff were used to working with early intervention kids. And I was like, hey, we're going to do it. Our first session, he was aggressive towards me for several hours. And so we just decided to take a really

Lola Dada-Olley (31:37)

Mm -hmm.

Breanna (32:04)

a natural environment training approach, help him understand himself because at this point his self -esteem, I'm bad, I got anger issues. So we introduced autism to him. We showed him sensory experiences. We took him in the community and there were times where it wasn't great, but we were out there supporting him in his most challenging times in the community.

teaching him about his feelings. We were teaching him natural consequences. You can't talk to Ms. Breonna any type of way and expect it to be okay, right? This is how other people are gonna treat you as well. so building up his self -esteem, building up mom's confidence in her skills, and just kind of really natural environment training with him, building a relationship with the school. And so he had it in

I think we were able to kind of support it and nurture it and bring it out. But he's in summer camp. He had been kicked out of all of them before for a decade. So we're doing great. So yeah.

Lola Dada-Olley (33:22)

Let me ask

question about we know that a lot of this stems from not enough resources in these communities and all communities really when it comes to individuals with disabilities. So I'm going to ask you to imagine here if money was no object, no object, you could do anything you want you wanted to in the great state of Georgia, in the great state of Texas, where I live throughout the country, money was no object.

Where would you invest in the autism mental health and IBD spaces?

Breanna (34:05)

call this the social work magic wand question.

Lola Dada-Olley (34:08)

Yes.

Breanna (34:12)

I would start with the medical system because unfortunately that's where a lot of this, that's where these diagnoses and these criteria is. Like that's where I would start is educating those providers, changing that curriculum of what this can look like. And so this young boy didn't present, you I was just meant to, he didn't present, right? Like he wasn't,

Me and his mom said he wasn't disabled enough, right? He didn't look autistic. And so he got, he saw lots of doctors. He saw lots of providers. He saw lots of therapists. He was in school and nobody picked up on the fact that like he wasn't just being bad. He was overstimulated. And so if we start there from a foundational educational place, right? And I think that's also got to do with how we value people as a system.

And that's a whole nother conversation around Western values. But everybody has, everybody can contribute. And so just really trying to figure out what is it that this person is communicating. And so if we like build that into what people learn, right? And the system that's supposed to be helping, I think that would be really helpful. I think paying people who do the work enough.

Lola Dada-Olley (35:13)

Yes.

Breanna (35:36)

is really important as well. We have a provider shortage in general, and direct care staff. And again, that goes back to how we value disabled people. We don't. And if you start looking at the intersection of like disability history and Black history in our country, can tell you a lot about why we're here, right? In Black bodies and disabled bodies and, you know, how we don't consider them whole. And

So starting with the education piece and then creating services for people that are holistic. And we used to do, I think back in the 80s and 90s, we used to do more of the medical kind of collaborative services where providers could get compensated. Like if I wanted to partner with the psychiatrist and I wanted to partner with the SLP,

We used to do more of that collaborative care and people could get reimbursed. I think we need to bring that back because we're all kind of guessing and throwing things at the wall. And if we are all seeing this whole person, we should be communicating. But people can't get reimbursed for that. So they don't do it. Right. So those are a few places I would

Lola Dada-Olley (37:00)

Breaking down the silos is a very common theme and I talk about that too, about like for instance when you move across the country and you decide, you realize that the states of America are not fully united because the services in one state vary very differently, very, very, very different.

Breanna (37:24)

Mm -hmm.

Lola Dada-Olley (37:24)

and we're all in the same country allegedly and you move to another state you're like wow this zip code has changed everything so that would be another way start all over

Breanna (37:32)

And you have to start over. You have to start completely

over. We used to get so many crisis calls for people asking where they could

Lola Dada-Olley (37:42)

Mmm.

Breanna (37:45)

and people calling to move to Georgia. And I have to be honest, you might want to really look into services and options. So, yeah.

Lola Dada-Olley (37:49)

Yeah, might want to think that through. Yeah, yeah, yeah,

yeah. Years ago, particularly when we first touched down in Texas and people were only focused on the lower cost of housing. And I said, if you have a child with a disability that needs services, think that through again, because you might have a cheaper house at the expense of everything else.

So that is for sure. So for families looking for resources in your locale, where you're at, how could they start to at least get a baseline of what's out there for them?

Breanna (38:40)

Well, my state is unique in that care coordination is not guaranteed. And if you have straight Medicaid, you don't have care coordination. So ideally, a care coordinator would be able to assist you. What I need is families who get a psychological with three pages of resources and links and things to follow up and they don't know where to start.

So if you have a funder who uses case management or care coordination, then I would start there. I always tell families, particularly this is one of the first things I do after they receive a diagnosis or their child's, their or their child's level of care changes is to connect with another person with the lived experience. Because sometimes folks isolate, know, some people have different experiences. And so just to have a peer who's been through it or who knows, you know, that's going to be so much better than me talking to you. I mean, I've been in the field for a really long time, but I think families have different lived experiences and are more resourceful than you know, because you have no choice. So that's one of the places. I also say to start because there's stuff you know, folks find out about things quicker. And then every state has a technical assistance organization. Now they vary by state. So here in Georgia, we have a place called parent to parent.

and they have kind of databases and you can call and you're talking again to another parent. And I think that can be really reassuring at times. And so those are just some of them. I tend to tell people to be mindful, although I know it's hard about just jumping on the internet and joining all the groups and joining all the listservs and listening to all the influencers, particularly now, I think it's confusing.

Lola Dada-Olley (40:53)

Yeah

I know. It's a nice way to put it. Some of those influencers is just straight up misinformation. Like, it's just... boy.

Breanna (41:02)

for folks.

Yeah, and

I encourage families to, while I think access to information is great, you have to center what is going to be significant and meaningful to your family because there's going to be all types of recommendations, all types of things. And so again, I think having a peer or somebody who's been through it or somebody who has similar experiences with you is really, really helpful because

I've had parents almost have breakdowns themselves because they're like, well, Miss Brianna, I heard ABA is bad. I want to do general parenting. I've had families go to other countries and get stem cell. There's so many things out there and it is so overwhelming. So that's why I think building families up is so important because you're you're going to get information overload.

Lola Dada-Olley (41:43)

Hello.

I tell parents, because we've definitely been down that road, we have this framework. It's like, okay, are we doing the best we can with the information we have at the time within the monetary and geographic limitations we have? And if we can answer that, yes, we do our

And we try really, really hard not to look back because if you do that for too long, it prevents any progress moving forward. Much easier said than done, but that's the framework we use because it's so, so easy to get overwhelmed. It's so easy.

Breanna (42:33)

Mm -hmm.

Lola Dada-Olley (42:42)

Brianna, thank you. You are a wealth of knowledge. Where can people find you if they're looking for resources in your area?

Breanna (42:49)

So you can find me at synergybehaviorconsulting .com. I'm on Instagram and Facebook, LinkedIn. I'm all in the internet and pretty responsive. And if I can't provide support, likely will send you to someone who may fit your needs.

Lola Dada-Olley (43:11)

Thank you so much. Thank

Not Your Mama's Autism (NYMA)

Serving Families in Crisis: A Conversation with Breanna Kelly-Higgs LCSW, BCBA

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