Making Prevention Education Accessible for All

Children with intellectual and developmental disabilities are more than three times more likely to experience abuse and neglect than children without these disabilities. We should see a prevention landscape filled with programs tailored to these children. Yet, as Dr. Melissa Bright from the Center for Violence Prevention Research tells us, few such programs exist, and even fewer have been researched for their effectiveness. Why does so little research exist on this uniquely vulnerable population? For child abuse professionals, how might we create or adapt prevention programs for these children? And how do we approach parents and caregivers who may have questions or concerns about prevention programming for their child? Take a listen.

Topics in this episode:

• Origin story (01:35)
• Unique vulnerabilities (04:35)
• Why so few prevention programs? (07:41)
• Focus groups (11:05)
• State-required prevention education (20:56)
• Advice for child abuse professionals (25:42)
• You’re not innovating if it doesn’t work (29:10)
• Public policy implications (37:37)
• For more information (40:06)

Links:

Melissa Bright, Ph.D., founder and executive director of the Center for Violence Prevention Research

“Parents’ and professionals perspectives on school-based maltreatment prevention education for children with intellectual and developmental disabilities,” Csenge B. Bődi, Diana P. Ortega, LouAnne B. Hawkins, Tyler G. James, Melissa A. Bright, Child Abuse & Neglect, Vol. 145, 2023, 106428, https://doi.org/10.1016/j.chiabu.2023.106428

Erin’s Law

Jenna’s Law

 For more information about National Children’s Alliance and the work of Children’s Advocacy Centers, visit our website at NationalChildrensAlliance.org. Or visit our podcast website at OneInTenPodcast.org. And join us on Facebook at One in Ten podcast.

Transcript

Season 6, Episode 3

“Making Prevention Education Accessible for All,” with Melissa Bright, Ph.D.

[Intro music starts]

[Intro]

[00:09] Teresa Huizar:
Hi, I’m Teresa Huizar, your host of One in Ten. In today’s episode, “Making Prevention Education Accessible for All,” I speak with Dr. Melissa Bright, executive director of the Center for Violence Prevention Research. Now, we know that children with intellectual and developmental disabilities are more than three times more likely to experience abuse and neglect than children without these disabilities. And an increased risk for sexual abuse and sexual assault extends across the life span for people with intellectual and developmental disabilities [IDD]. Given this, we should see a prevention landscape rife with programs tailored to these children. Yet, as you will hear, few such programs exist, and even fewer have been researched for their effectiveness.

Why does so little research exist on this uniquely vulnerable population? For child abuse professionals, how might we create or adapt prevention programs for these children? Too, how do we approach parents and caregivers who may have questions or even concerns about prevention programming for their child? I know you’ll find this conversation as thought-provoking as I did. Please take a listen.

[01:30] Teresa Huizar:
Welcome to One in Ten.

Melissa Bright: 
Thank you. Really happy to be here. Thanks for inviting me.

[01:35] Teresa Huizar: 
I want to kind of start at the beginning, which is: How did you become interested in the sort of intersection between child abuse and child abuse prevention and kids with intellectual or cognitive disabilities?

Melissa Bright: 
Sure. So the first part of that is the more straightforward, easy answer. I’m a developmental scientist, so my degrees are in developmental psychology, and I have studied child abuse since the beginning in college. Started with perceptions of child abuse and how people make decisions using stereotypes about what is abuse and what isn’t. And from there, throughout my studies, kept looking for ways to make a better and bigger impact. 

So I was thinking, instead of just the individual level, looking at families, looking at communities, looking at systems, eventually tried to be into policy and make my impact there. Was making some headway but also feeling a little disheartened at the slow pace of making an impact at the policy level and found my way to a faculty position where I was doing research and writing papers that went into journals and hoping that someone would read them and do something with it. And also simultaneously, just feeling pretty disheartened that the feedback I was getting was like, no, only your colleagues are reading that and, the best-case scenario, maybe one practitioner or someone who needs it might read it. If they can afford to get access to it, which is an all-too-common problem. 

And so then I started working with some community partners doing community-based prevention education for abuse, and they wanted to know if their program worked. And they wanted me to study it and they said, you know, “We are open to you telling us that it doesn’t work and how to fix that.” And that was really a game-shifter for me of realizing how I could use research in what I call the real world, and I’ve been hooked ever since. And so that was seven or eight years ago and have been committed to doing community-based prevention work since then.

The second part of your question, with the IDD, I never sought out to study kids with IDD. I never claimed that as an area of expertise or specialty in any way. But I was brought on to, again, evaluate a program that was in development. And I thought, you know, I’m sure these kids are absolutely at higher risk. That sounds like something I could do. 

And so the first line is to always look to see what research exists on them, on the programs. and there was nothing. And the more I kept digging, the more we were finding out there’s not a lot. And I’m sure we’ll get into this and other questions, but there’s just such a deficit that I feel not just academically interested, but I feel obligated, you know, to use what I can to help create and improve the prevention landscape for these families.

[04:35] Teresa Huizar: 
So what do we know about the unique vulnerabilities that kids with intellectual or developmental disabilities have?

Melissa Bright: 
Cognitive delays, so they may look older, they may be chronologically older, but mentally much younger. Which creates a problem because sometimes they’re treated as older children for someone who might not know them. And then they might only have the reasoning capacity of a much younger child. 

Sometimes there are social deficits as well, knowing social boundaries and what is acceptable in society versus not getting a little close to someone. Or those social cues that the rest of us pick up on and realize when boundaries might be crossed that these kids struggle to identify. 

[05:24] Teresa Huizar: 
I think it’s—you know, some interesting points you’re making, which is, one, that you could have a child who crosses some boundaries themselves, not realizing it with other kids or something like that. But the other thing is, when you think about grooming behaviors that adults have towards children, the ability of someone with IDD to even identify that it’s happening to them or pick up on patterns or concerns of boundary violations is an issue. And not just when they’re children, but really across a lifespan.

But then also this piece about, you know, I think that—and I hadn’t really thought about it in quite the way you framed it—but because someone’s chronological age and their developmental age might be somewhat different, then issues of consent become an issue too. Yes. Can you talk a little bit more maybe about that? Kind of like, for folks who in their professional work might not come across—this might not be their primary population of kids they’re working with—how might this present? 

Melissa Bright: 
Absolutely. So I think you articulated some of those points better than I did. And we probably could spend the whole podcast talking about the unique vulnerabilities of these children, but also adults. And so your question of how might this look where your chronological age is different than your developmental age and consent, so this is not something I know the answer to. But consider an adult who is 18, 19, 20, who has the developmental capacity of a 13-, 14-year-old, maybe younger. 

I actually have some colleagues in the medical field who have told me cases where, um, that adult comes into the maybe emergency room or primary care, and there are suspicions that they’re engaging in sexual activity and not really clear on whether that was consensual or not. And even the adult might say it was consensual, but there’s just kind of this gut instinct that they don’t really understand what they’re consenting to. So that unique vulnerability of wanting to appease someone or engage in something that they think is normative and that they should be wanting to engage in but aren’t actually giving complete consent for that. 

[07:41] Teresa Huizar: 
You know, Melissa, one of the reasons I wanted to talk with you, I mean, I found your study interesting anyway, but back in the day when I was a CAC director, I can remember very clearly a specific case with a young lady who unfortunately cycled through our center, having been sexually abused by several individuals over a period of time.

She definitely had developmental disabilities and, you know, her parents were at their wits end about how to keep her safe. And it prompted me in, you know, a later period to, uh, to look at our own revictimization data. And to really look at, you know, who are those kids that we’re seeing revictimized over time?

And in fact, while it wasn’t the only factor in kids who get revictimized more than once, of course, it was a very interesting and significant factor in that. So I’m wondering—because I’m not the only CAC director who’s had that experience or MDT [multidisciplinary team] member—I’m wondering why you think it is that so few prevention programs have targeted this population given that we know they’re vulnerable?

Melissa Bright: 
Well, I certainly can’t speak for them, but I would say that it can seem like a quite daunting task to take material and content that is already complicated, for youth and adults, and to then alter it to be even simpler or more digestible can be overwhelming. Content that in some jurisdictions and states it’s hard to even broach the subject. And now we’re going to broach the subject with an even more vulnerable and sometimes isolated population. 

Something that we found in our research is not really sure who is supposed to do it. So we know there’s a lot of prevention education that happens in classrooms, mainstream classrooms, but now you add this other component and does it need to be the special education teacher who does this? Or does it need to be the abuse prevention specialist who does this? Does it need to be both? What are the credentials of someone who can convey this complicated—at least complicated to a child—information to a population that works through different routines and norms and their school day looks different?

And so, again, I can imagine it to be overwhelming to try and approach those issues. Certainly not impossible. I think that we’ve learned a lot in the past even year that my team’s been working on this, that we can identify the best practices for prevention education and special education and integrate them.

I think another obstacle is, it’s pretty well documented in the literature that parents of children with severe IDD, but even maybe more mild or moderate, don’t see those children as ever being sexual beings and ever needing to talk about those topics. Also, on the flip side of that, being a parent myself, not wanting to think that their child could ever be victimized and just assuming that: I always know where my child is. Like, my child needs me 24 hours a day, and therefore they’re never out of my sight. 

So a bit of naiveness, maybe, about the likelihood that it would happen as well. I think there’s just all the regular barriers of prevention and plus more.

[11:05] Teresa Huizar: 
Yes.

So one of the things that you did that I thought was so helpful and interesting is you pulled together focus groups to just ask both—if I’m remembering right, but correct me—caregivers and professionals about these things. And so can you just talk to me a little bit about what you learned through those focus groups? 

Melissa Bright: 
Yes, you’re correct. So we did parents, we did teachers—we did both mainstream teachers and special ed teachers—and CAC staff—prevention side and on the services side, direct service side. 

And that was it. You know, we had a few structured questions, but the basic one was: What do you think about this and how do we tackle it? And that’s a really interesting findings, which is usually the case with focus groups. And it reminds you of why research is important because we don’t—I don’t know everything. I need to ask people. But one is thinking about that kids might be triggered. That these might be ultra-sensitive kind of topics or things that need special care in their discussion. Which is fair. That’s something we think about with talking about these topics to other kids in mainstream classrooms as well. And that the parents might likewise be a little sensitive to it for the reasons I just explained of “This would never happen to my child.” Or, you know, “My child is never going to need to understand body parts or be able to talk about experiences like that.” Or that they think that the children—not that parents think this about children, but that the general perspective is that these kids couldn’t understand this, that they wouldn’t be able to comprehend it. So why even sort of go down that path of trying to teach them? 

And so that was one thing, or a few things, I suppose, of then just talking about the barriers that we might face to trying to create prevention education. But then also strategies that if we can create it, what that would look like. And so things like shortening the lessons and doing a lot more visual based. So fewer words, if you’re going to do a PowerPoint presentation. 

And the most important thing that I heard over and over and over again was the multiple possibilities for communication and communication assistive devices and allowing the child to receive the information and engage in the education program using their preferred communication strategy. So, if that is spoken word, if it’s written, if it’s sign language, if it’s with a device, whatever that is, adapting to make sure that you meet the child where they are. Which I thought was so simple yet such an important component of bringing this education to them. 

[13:50] Teresa Huizar: 
That’s a lot to unpack, Melissa. 

[Laughter]

Melissa Bright: 
Sure. Sure. Yeah, no.

Teresa Huizar: 
As you were talking, you know, I was kind of making mental notes about some areas to dig into, and I’m just thinking, kind of starting with the parents. This, you know, feeling that because they are so attentive that kids are never going to be out of their sight, those kinds of things. And I was thinking back to this case that I told you about. That young lady was climbing out the window at night. So it’s like, you can have your eyes on these kids—and adults and teens—you know, a lot. But the reason that we do this kind of prevention work is because, at the end of the day, it’s not 24/7, right? You have to fall asleep sometime, and you have to— [laughter]. Plus, you’re hoping that these kids, and eventually adults, can be as independent as they possibly can be, you know, under the circumstances. Respecting their autonomy and all of that.

So, I mean, it’s, it’s an interesting—you understand why a parent would so want to shelter their child and want to protect them from everything and all of that, but sort of underestimating the curiosity of adolescence. 

Melissa Bright: 
Absolutely. 

Teresa Huizar: 
You know, all of those things. And, you know, all the things that we did as adolescents that were not great ideas— 

Melissa Bright: 
Mm-hmm.

Teresa Huizar: 
—like sneaking out of the house at night and whatever. 

[Laughter]

I’m telling on myself, but my mom’s not listening to this one.

But anyway, it’s just you can understand it and empathize with it. I’m wondering, did you turn up strategies as well that would be helpful in overcoming some of these? You know, things that, whether through the focus group or not, that might, for example, make a parent feel more comfortable about the fact that their child would be talked to about this. Or that might help child abuse professionals feel like they could work with the special education instructors to come up with methodologies to deliver information in a way that could be received. Or other aspects of your findings. Because I know you’re a can-do person. So you weren’t just going, “Well, we had these sad findings.”

[Laughter]

 “We’re not going to do anything about that.”

So what did you find in terms of strategies to overcome these barriers?

Melissa Bright: 
Yeah, you’re right. Can-do person. So that was the first study. And that sort of opened Pandora’s box so we need to know more and more and more. 

Teresa Huizar: 
Hmm. Hmm.

Melissa Bright: 
And so we’ve done a few more studies since.

Teresa Huizar: 
Right.

Melissa Bright: 
And are actively working on another one that I will definitely be plugging at the end of this. 

Teresa Huizar: 
Awesome.

Melissa Bright: 
Because we’re seeking information from people who, hopefully, are listening.

But the strategies are not published in the literature, per se. There isn’t this guidebook of “here’s what you do.” But I do think that they are out there and can be pulled together and packaged in a way that parents and teachers, and all the adults could find useful. 

Another thing of, you know, the unique vulnerabilities, and that parents have to sleep at some point. And probably a lot of these parents also have to go to work. And so their kids are going other places. And one of the unique vulnerabilities is that they tend to have a lot of other adults in their lives, a lot of assistance in either their occupational therapy, physical therapy, speech therapy, they might have an aide in the classroom. And so that’s great. These are all adults that can keep an eye on these kids and help keep them safe. It also opens them up to more and more vulnerabilities—

Teresa Huizar: 
That’s right.

Melissa Bright: 
—of people who could take advantage of these kids. And again, I say “kids” because of my narrow mind, but this kids, young adults and adults all fall within the same category.

Teresa Huizar: 
That’s right.

Melissa Bright: 
And, what can we do? I always tell parents, especially my friends who don’t do this type of work, who think, “Oh, my gosh, Melissa, how can you be thinking about this all day long?” They don’t want to think about their kids possibly being in this situation. And I tell them, “Knowledge is power.” Right? You can choose to not understand or not think about your kid as potentially vulnerable. Or you can understand all the vulnerabilities and tackle them one by one. And so that’s what I say to parents of, “Let’s figure out how you as a parent can talk to your child about this. If you don’t think that it should come from school or from these other adults, let’s educate you on what conversations you can have.”

And if it’s a very severe case of IDD, perhaps it’s just the very basics of being able to make sure that child can vocalize consent. To either “yes” or “no,” or to vocalize with a parent or a safe adult, “Something has happened that I don’t like.” And start there. And then from there, talking about more complex things, or what’s okay versus not okay. If they need assistance with things like getting dressed and toileting and things. Those are—they make it more complicated. But knowledge helps you. Being naive or ignoring it isn’t going to make it go away. 

[18:40] Teresa Huizar: 
I think one of the things that parents sometimes feel is that if they don’t know more about these things, then they must not be happening.

I mean, it sounds like magical thinking, but it is a little bit, honestly. 

[Laughter]

Melissa Bright: 
Exactly.

Teresa Huizar: 
And I don’t mean that at all unkindly. It’s completely understandable. 

But, you know, you’re thinking, well, what this really means is that, you know, we need to explore if your child—or teenager or adult—has all of these helpers, then we need to also be thinking about not only what we’re teaching the child but what we’re teaching the parent about what they need to keep their eye on. You know, how people need to be screened. What questions they should be asking. How much someone should be left alone. You know, like all of, all of that too. And I’m wondering, who’s having that conversation with parents too?

Melissa Bright: 
One hundred percent agree. And the other side of that also is not just, oh, making sure that these aides are not causing trouble, but also that they are informed to better protect those children.

Teresa Huizar: 
That’s right.

Melissa Bright: 
That they understand the signs and the situational risk factors. And that everyone around can be a support. 

So who’s talking to them? No one, to my knowledge. But I mean, you know, I’m sure it’s part of some basic education and training things. But again, what I am finding time and time again, as we’re looking in these different fields for these resources, is they don’t exist at a large scale with good research behind them. Lots of people have found there’s nothing out there. So we need to create something. And they might create some internal policies and procedures. Maybe a little bit of education—mostly around reporting and how to know, you know, what to do if a child reports. 

I don’t even know if there’s a whole lot about how to know if a child or youth with IDD is disclosing. Like, how to discern sort of nuances. And hopefully, their response or their policy is to report it no matter what. But other than that, there’s not a lot on the prevention side of: How do we do this? And how do we know what we’re doing works? Which is the part that my team comes into. 

[20:56] Teresa Huizar: 
One of the things that popped to mind as you were talking is, as you know, in 38 states, we have Erin’s Law or some, something—it might be called something else like Jenna’s Law. But it’s—

Melissa Bright: 
Mm-hmm.

Teresa Huizar: 
—something like this where schools are required to provide sexual abuse prevention education to kids. And what I’m wondering is, in those states—and you may not have looked at this at all, so I don’t know, you know, I’m just, it just popped in my head right now—but I’m just wondering whether children who have intellectual or developmental disabilities in those states are actually receiving anything at all. Or if, in fact, that’s just a gap in many cases.

Is that something you guys have looked at all or no? I realize I’m putting you on the spot since this didn’t come out of your research. 

Melissa Bright: 
No, no, no, no, no. I appreciate it. Again, that paper that you originally referenced is just one. I could talk all day about all the stuff we’re doing— 

[Laughter]

Melissa Bright: 
—and all the stuff that needs to be done.

We have considered that. So I did a study a few years ago looking at those laws and general cases of child sexual abuse reporting and substantiation. So not specific to children with IDD, but general school-age children. And the short story for that is those laws do have an impact in a good way of increasing reports, but not increasing substantiations. So kids are talking more and they are disclosing more, but it’s not like all of a sudden we’re having a ton more cases of abuse happening.  But then we were curious about, well, what about these nuanced school settings? So homeschooling and special education settings and virtual school settings. And a lot of the laws don’t have that level of specification.

And I’ll say—with the caveat, I’m certainly not an expert on all of that legislation, but—my understanding is that when it does just say “general public education,” that would cover our special education kids. In theory, they are receiving it. However, I also know that the vast majority of that legislation does not come with accountability pieces, and so there’s not really good tracking of whether or not any child, much less children with IDD, are getting that education.

[23:05] Teresa Huizar: 
That’s so interesting.

You know, our interest in that, of course, has always been on the curricular development side, because it’s not like there was one standardized evidence supported, you know, curriculum—

Melissa Bright: 
Right.

Teresa Huizar: 
—for that. In fact, every state’s been able to develop their own however they want. And in some states CACs have been very involved in that effort, or the Chapter has. And in some they’ve paired with academics. And others, they’ve done none of that. It’s just been contracted out to someone somewhere. 

So I think there’s still a lot on the implementation side of that that needs some attention. But I do think that, for those listeners who are involved in efforts in doing school-based prevention, I think making sure that we’re not being walled off from the sort of special education students or the special education, there’s a department or however it’s organized within the school, I think it’s going to be very important. 

Because I’m not sure we would even know that that’s the case. You know, if you’re called to present in a classroom, like, “Can you present to all the fifth graders?” And it’s Miss So-and-so and Mr. So-and-so and blabbity, blah, blah. And you go out and you do your five classrooms. I’m not sure that it would occur to you to go, “Wait a minute. I’m not sure I saw any kids, you know— 

Melissa Bright: 
Yeah.

Teresa Huizar: 
—that had IDD in the classroom. So where are they?”

Melissa Bright: 
Absolutely. That is absolutely the case that I’ve heard from some CAC colleagues.

Two things to consider with that. One is, depending on the severity of the IDD, they might be in those classrooms. You know, they might be integrated and that be their home base classroom. They just get some extra support services. And so they might have an aide in that classroom that does help them through that presentation that is being given to all the other kids. 

The other is schools or jurisdictions that still emphasize special education settings, or where the children have more severe deficits, usually it’s a blend of grades together. So when you say, “I’m going to go to all the fifth grade classrooms,” that one doesn’t really get triggered because it’s a third grade/fifth grade classroom. And you’ve got a mix of kids who have maybe some, you know, very severe on the autism spectrum disorder, kids who have combination of intellectual disabilities and physical. And so from maybe the child abuse prevention specialist, or the mainstream classroom teacher, it’s like, “Whoa, I don’t even know how to approach teaching that because that doesn’t fit the model of what we’ve already developed.” And so you do have to make changes. 

And it might—again, I think you’re right. It just doesn’t occur that, “Hey, there’s a whole group of kids in this school that I haven’t ever seen.“

[25.42] Teresa Huizar: 
So I’m just wondering—thinking across all the research you’ve done, not just the most recent study that I saw and we contacted you about. But when you are thinking about advising—you’ve worked with Children’s Advocacy Centers before—when you’re thinking about advising them about their school based prevention efforts—because so many of them have them, as you know, that’s really very widespread in our movement that CACs are very involved. What is your best advice about strategies that they should employ? Things they should be thinking about? Things that you’re like, “These are absolutely things that—”, you know, they’re the must-do’s? What are those things that you would like them to know and be thinking about and taking action on?

Melissa Bright: 
Well, first, I’m super excited you gave me a soapbox. 

[Laughter]

[Cross-talk]

Teresa Huizar: 
Yeah, take it. Run!

Melissa Bright: 
That I get to just say whatever I think they should know or, or be doing.

So off the top of my head, it’s always to check the programs and strategies that you’re using. Are they really—I’m going to say evidence-based, but I have a tangent about that as well. Do they really work? And how do you know that? So, is it because you can tell the kids are excited at the end of it? That is something, but that doesn’t mean that they’ve actually learned anything or that they’re going to take that knowledge and turn it into anything. And so we have a real deficit in our general prevention education materials in terms of knowing if they do anything. 

We do know that they can improve knowledge. There’s been decades of research about that, that kids can tend to repeat what they learned in the classroom. And even for long terms—I did a study where I think we followed up seven or eight months later, and they were able to remember concepts and important features. So that’s really encouraging. 

The next step of: Do they do anything with that? Do they change those behaviors? Would they really report on their mom or their dad or someone that they loved given that they just learned that they’re allowed to tell anyone and not be blamed for it? But would they really do it?

And so the advice I would give is to check all of your resources on that and see: hat do we know about the program that you’re using? How well has it been tested, and using what kind of science? And if you can’t find much, or if it was just created by someone who knew the community, then it might not be the best program. And you might be spending a lot of dollars and a lot of time on something that isn’t really doing anything. 

Which is a discouraging message that I tend to bring people, but my goal is to increase efficiency with dollars and time always. Because I know CACs are so often really counting pennies to make sure that they can serve as many children as possible in all of the ways possible. And so if we can get the best programs in there, then that will maximize that efficiency. 

I would say also engaging with not just the teachers but the whole school community. So that’s the parents, that’s the staff and the principal, the PTA. The more buy-in you can get in a school to really build a culture of prevention, a culture around the program or strategies that you’re using, the more impact you’re going to have.

So going in and doing a one-off in one grade level isn’t going to be as effective as if you can get the whole school chanting, you know, something about prevention or that they’re empowered or, or that they’re all on the same mission. That will make a big difference. 

[29:10] Teresa Huizar: 
Not every CAC for sure, but lots of them partner have academic partnerships—on certain things. It’s just adding this to it. You know, not thinking that prevention somehow or the prevention curricula that you purchased or developed or partnered on or whatever—even if you’ve been using it for a while, and probably especially if you have been, it’s an opportunity to partner with your local university or college, whatever, to say, “Let’s see if this really does work. Let’s build the evidence base around it and be open to finding out, you know, it does, it doesn’t, or some aspects work, but others don’t.”

Melissa Bright: 
Yeah.

Teresa Huizar:
I think that, you know, we want to be doing evidence supported work. So I think that looking for that opportunity is critically important. And that doesn’t—you know, I don’t know if you’ve ever heard this, Melissa, but sometimes I’ve had some people be like, “Well, you know, we’re trying to be innovative.”

It’s like, “Well, that doesn’t stifle innovation, but— 

[Laughter]

[Cross-talk]

Melissa Bright: 
No, no.

Teresa Huizar: 
  “—the scientific method is that you test things,” right? Like, you’re not actually innovating if it doesn’t work. That’s the thing.

Melissa Bright: 
Right, right. No, I’ve never heard that as like a counterargument to science. [Laughter] I mean, I guess if you tried to pit, like, art against science? And trying to be creative and something new and as opposed to something that’s old and been studied forever. I get it. I can sort of, I can follow the train of thought there. But you can be novel and innovative and absolutely backed by science and effective. And why would you want to be innovative, like you said, if it doesn’t do anything? Why do you want to spend so many hours and miles and dollars on something just because it’s new?

I mean, that doesn’t sound good to me from a business model, by any means. 

[30:55] Teresa Huizar: 
No. [Let’s talk] about the strategies that are evidence-supported with these kiddos and, as we’ve said, adolescents and even into adulthood. What does the literature really say about that? Is it around the methodology of delivery? Is it around something else? I mean, just kind of—even though you’ve stressed how little is out there, whatever’s out there you’ve read, so—or contributed to, or added to. 

Melissa Bright: 
Mm-hmm.

Teresa Huizar: 
So, can you just tell us, like, if somebody has a curricula and they’re hoping to shape it in such a way that they are serving these kids and they haven’t been, what would you tell them to look for?

Melissa Bright:
First, if they have a program that they’re already using for other classrooms, then, yes, adapt that program so that tomorrow and the next day and the next day, you can get in those classrooms. But, if you have the means and the time, it’s really better to create a program designed for those kids, not adapted.

Because it really is a different approach to the education model. And so just making adjustments, it’s kind of like translating materials to another language without doing a cultural translation. So, yeah, you’ve captured the words, but it doesn’t really land the same way. You know, we could get by with it for a little bit. But really aim to use a program that was developed for these kids. 

What we have done is, we first did a search for all the school-based programs internationally. And actually, all but I think one that we found were in other countries. And usually they were—I think we had two programs that were tested in two different countries, but the other ones were one-offs. They were: A group created it, they tested it, and then they published it. And usually there was again, just one study usually, and bare-bones knowledge assessment, if possible. 

And I think our final number was six programs that we got across the whole world that were school-focused, that were for kids with IDD, that had been tested in that population, and that we could say something about the nature of the program and whether or not it was effective.

Still very, very early. The summary of that paper is: We have a lot of work to do. We then—and that paper hasn’t been published yet, but as soon as it is, I’ll be happy to share with your listeners and your audience. 

But then we looked at, okay, well, perhaps these kids are getting more of the resources in the community. Because they do use a lot of resources outside of the school system. So maybe that’s where these programs are. So then we expanded our search and just looked through all the community programs, and we have found some more. Most of them, I don’t really understand why,  and maybe you have a listener base who can tell me why, but there was this big movement to do abduction-prevention-focused work for children with autism spectrum disorder. There’s a lot of papers about this, a lot of studies on how to teach them to identify a stranger. And to be able to verbalize or communicate, no, or dissent, you know, to going somewhere. And then to tell somebody. I’m not sure why that became such a big focus in the literature, but that’s a lot of what’s out there. 

There are some other ones that are like, at your YMCA or, you know, some community centers that, again are kind of homegrown. They created them. They wanted to educate parents about maybe the sexual reproductive health of adolescents with IDD. And they might throw in some things about vulnerabilities for abuse or assault. Again, the summary of that paper is: We have a lot of work to do. 

And then, most recently, what we’re looking at is any type of prevention programs that exist in the sport ssetting. So we have some other research where we are looking at educating youth football coaches for preventing child sexual abuse in typically developing children. And so we kind of merged those ideas together and said, well, wait, there’s a lot of benefits to sports for kids with IDD. There’s a lot of literature to say it’s very good for their health. But we know that sports can be a risky situation for abuse for all children. And we know that kids with IDD may be at greater risk on those settings. So what kind of policies, procedures, strategies exist for that? 

And we’re in the process of gathering that. I think we’re nearing the end. We have a few more meetings set up with big big players in the field. No pun intended. But not a lot out there either on that. Right?

So in the papers we publish, we will name all the programs that we have found, and people can go do their own homework on them. But I can’t tell you, you know, “Here is the program that has been very well studied that really shows effectiveness.” 

Plenty have been used a lot. Doesn’t mean that they are very well studied. 

[36:03] Teresa Huizar: 
I guess my question is more generally that, you know, as the evidence Um, base builds, as the literature builds—and that’s going to take some time because you’re starting from almost zero, [laughter] based on what you just said. 

Melissa Bright: 
Mm-hmm.

Teresa Huizar: 
It’s not in a good place. It’s not going to be robust for years. So what is a child abuse professional to do in the meantime that’s the responsible thing to do to make sure these kids are getting something— 

Melissa Bright: 
Mm-hmm.

Teresa Huizar: 
—that’s genuinely helpful to them until there is a research consensus on what’s best? What do you advise?

Melissa Bright: 
Absolutely. I completely sympathize with that. Whenever I tell my community partners, you know, a good study is going to take me at least a year, two years. And they’re like, “Whoa, that’s thousands of kids I could have interacted with by them. You know, I need something now.” I get it. The research world moves at a snail’s pace.

So my recommendation is to take the most effective program that you have, whatever that is, and adapt for these kids. And if, best-case scenario, work with the special ed teachers, with your support professionals, to have them review the curriculum with you to see: Where should we make modifications? What should those modifications do? 

And be open to the idea that you, as the child abuse professional might not be the best person to deliver that program in that classroom. Maybe you should be there. Maybe it should be a co-led thing. But to really establish that partnership to see that a number of changes might need to be made. And be open to those going into those situations.

[37:37] Teresa Huizar: 
Well, this has been enormously helpful, and I really appreciate that. 

You know, I want to sort of close out, um, beyond the individual sort of child abuse professional or CAC level. When you think about policy implications, are there things that, you know, pop to mind? I’m going to give you a chance for a second soapbox here. Anything where you go, “Gosh, we need just policy makers to pay more attention to X when it comes to these kids.”

Melissa Bright: 
So, the easiest would be sort of what we just talked about. In those school based prevention ed legislation, name it. Name whether or not it has to be in all classrooms. In all students enrolled. And add some accountability to it. Accountability and funding. So make sure that it’s being put in those classrooms, but then you also have to pay for it, because those things are not free.

So that that’s the big one for sure is to modify what already has been a great movement and already a lot of advocacy behind those legislative efforts. 

And then, always more funding towards understanding the problem. So more federal funding to federal institutions where we can put more research to understanding all the dynamics and what works. Like we really need to have good, strong programs. And not just the curricula, but the models that are used at CACs and the strategies that very smart professionals have come up with but haven’t been able to test because of the finances that are required. 

[39:11] Teresa Huizar: 
You know, I’m so glad you said that, because if you hadn’t, I would say that’s on my policy maker wish list. 

[Laughter]

So I appreciate that, Melissa. Is there anything else I should have asked you and didn’t or anything else that you want to make sure we talk about before we wind our conversation up today?

Melissa Bright: 
I don’t think so. I really appreciate this platform. This has been such a gift. And talking with my colleagues who are working on those papers with me, and I have asked all of them, you know, what do you want to make—what should I say? And they’re always like, “Tell them that this is such an underserved population. And how dare we all ignore it so far? And everyone needs to take another look at what they’re doing. And we have so much more to do, and we can do it.”

[Outro music begins]

[39.55] Teresa Huizar: 
And we can do it. Thank you, Melissa, for contributing all of your wealth of knowledge to this. And I know our listeners are going to do it. So thank you. 

Melissa Bright: 
Thank you.

[Outro]

[40:06] Teresa Huizar:
Thank you for listening to One in Ten. If you liked this episode, please share it with a friend and rate it wherever you listen. And for more information about this episode or any of the others, please visit our podcast website, OneInTenPodcast.org.