Tony Mantor: Why Not Me ? - Leigh Anne McKingsley: Creating Pathways to Justice for the Developmentally Disabled

Episode Date: April 18, 2025

Send us a text Leigh Anne McKingsley shares her journey as Senior Director of Disability and Justice Initiatives for the ARC, where she oversees the National Center on Criminal Justice and Disability to address the invisibility and injustices faced by people with intellectual and developmental disabilities in the justice system. • The ARC began as a parent advocacy group fighting against institutionalization of children with disabilities and has evolved over 70+ years to promote inclusion through policy work and direct support • McKingsley's "Pathways to Justice" training brings together law enforcement, attorneys, and service providers to create community-based solutions through Disability Response Teams • Studies show 2 in 10 prisoners and 3 in 10 jail inmates report cognitive disabilities, yet proper accommodations and understanding remain limited • People with intellectual and developmental disabilities are 30-40% more likely to also have mental health conditions, creating complex support needs • Misinterpretation of behaviors like stimming can lead to unnecessary criminalization when officers don't recognize disability-related behaviors • Personal stories from those with lived experience are crucial for creating change, though "double stigma" of disability and justice involvement creates barriers • Success often comes from asking simple questions like "What accommodation do you need?" rather than focusing on specific diagnoses To learn more or get involved with the ARC's National Center on Criminal Justice and Disability, visit their website or contact them directly to help create pathways to justice in your community.   https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mayator. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to Why Not Me the World Humanity Over Handcuffs special event.

We are delighted to have Leanne McKingsley join us today. She serves as Senior Director of Disability and Justice Initiatives for the ARC and oversees the ARC's National Center on Criminal Justice and Disability, a clearinghouse for research, information, evaluation, training, and technical assistance for criminal justice and disability professionals. She possesses a tremendous amount of knowledge, and we are grateful to have her join us today. Thanks for coming on. Thank you so much, Tony. Oh, it's my pleasure. So if you would, expand on how you got into what you do. My background was more mental health as well, as you were talking, and I got interested as I was

working through my master's of social work and then I got a dual masters in public administration. We had our own jail overcrowding issue here in Texas that I was interested in addressing. That also intersected with mental health issues. And I was working with Senator Moncrief's office here in Fort Worth, Texas. And all of these things converged into what can we do to keep people out of the criminal justice system that have mental health disabilities. But then, lo and behold, there was an ad in the paper from the ARC of the United States that I had never even heard of before. And they were looking for someone to oversee a project because of the Title II, the Americans with Disabilities Act, where we could educate law enforcement attorneys, people with disabilities,

about their accommodations under the Title II. So that's when I got hired at the art. And that is when I first started seeing all of the injustices that people with IDD, including autism. When I say IDD, I'm talking about a much broader field, looking at autism, but also people with fetal alcohol spectrum disorder, people with all kinds of developmental disabilities who may not have a specific term attached to it. They still have a developmental disability and how often they remain invisible in our criminal justice system and how little there is in terms of research and supports when someone gets involved in the system. So it was 11 years ago that we started the National Center on Criminal Justice and Disability. It was kind of a lifelong dream to create a center that could really

house this kind of information and provide resources. And we also have a national information referral line so that people with disabilities, parents, attorneys, whoever, can call to get information and to actually get advocacy in these different types of cases. So can you tell us what the arc actually stands for? So the arc does not really stand for anything. It did back in the day. Originally, the arc started out because of parents who were wanting to advocate for their children to be able to go to school, have an education, not live in institutions. And they said no to the doctors that said your child will be better off in an institution. And they kept their children with them and then started fighting for education.

And that's how the arc started. And it was the association for retarded citizens at that time. But due to the stigma, obviously, of that word, now the arc goes by the arc. And our focus is really to have inclusion of people with intellectual and developmental disabilities. Whether that's in schools or everyday life, having access to the same thing. everybody else does and in a way that is safe and promotes their health and well-being. So we do that through a number of different ways. We have policy. We work with our chapters throughout the country. We have over 600 chapters throughout the country. And we're probably one of the best kept secrets

when it comes to this type of advocacy and supports for people with IDD. But we have been doing this work for over 70 years, really focused on people with IDD needing supports, whether it's policy at the local state and national level, working on policies that affect people with IDD, but also supporting our chapters who are boots on the ground, providing that advocacy one-on-one for families and for people with IDD. You said this started 11 years ago, correct? And where is the home base located? It was 11 years ago that we started the National Center.

on criminal justice and disability, which is housed within the ark. And our national offices are in Washington, D.C. And then I work from a home office in Texas. How long have you been with them? In February, it will be 29 years. In the 29 years since you very first started, what are some of the changes that you've seen that's taken place, that you can say, this is really good. It needs to get a little bit better. But what we've done is working. And that's a great question. I'll answer that carefully because there have been some progress made in terms of just society having more of an understanding of developmental disabilities. A lot of that because of autism. Now you can turn on Netflix and see shows on autism. I mean, there's there's just more of a general awareness around disability in some ways. But we still lack in really people understanding how that affects those. in criminal justice situations, those who may be victims of crime. So in certain areas, I think people are still invisible.

And that's why those accommodations are so important. And where we have also lacked is in research. And we know we have to have some research to drive change. Recently, I was involved in a meeting in D.C. that put out a report funded by the National Institutes of Justice to start looking at a research agenda. for people with IDD involved in the criminal justice system. So there are some ways that there is maybe some more funding to look at these issues. That's because of funding through the Department of Justice's Bureau of Justice Assistance.

That's what gave us the initial C money to start the National Center on criminal justice and disability. So there is some funding out there to do that. But there are still people with IDD who have been killed within criminal justice. system, whether it's through an encounter gone wrong with law enforcement or it's in our prisons and jails. And then there's victims who are not getting their day in court. There's still a lot to be done, but there have been small incremental changes that have been positive. When you start on a new chapter of your initiatives, especially with legislation, what do you do to try to get more legislation involved so that everyone from the judges down can get a better understanding of what's

needed to give a better outcome for everyone involved. And that's a great question. Let me back up and talk about when we first got the grant to start the National Center, one of the things we wanted to do is create training. And that is not the end-all, be-all, but that's part of the solution. And this, our training is called Pathways to Justice, which is a one-day training for law enforcement, for attorneys and the legal professionals and victim service providers that brings the community together around this issue.

So we're not pointing fingers and saying they're not doing their job or they don't help, but we're saying we all have a role to play in this. Part of that training, we help our sites set up called disability response. teams that are essentially planning teams that look at the systemic issues going on in the community and try to address the underlying issues that are creating the problems that they're seeing as officers or as people with disabilities. And so that speaks to if you're wanting to change a judge's attitude or understanding or the attorneys or whoever, you've got to start with a key group of people that are working on this together because once they get at the table and start talking about

these cases, they realize they may have never even had a chance to do this. And we've seen that in our trainings where they just don't have time. There's not the reason to get together and have these conversations. And so we're trying to create that opportunity. A lot of times there's expertise in those communities that just are untapped and they haven't been able to think through some of these solutions together. But what's always key about these teams is that you have someone with an IDD, someone with lived experience who brings that very important understanding to all of these discussions. Without that, you're missing the boat. And sometimes that's not provided or maybe not provided in a way where accommodations are there to help people meaningfully get involved.

So you want to make sure that we have people with disabilities involved at the very beginning of all of these discussions. I've been told with legislators, you need to sit down with them, throw away the emotions, give them facts and figures on how they can save taxpayer money by doing something or changing some of the things that are being done. Now, I think on the judges, it has to be a little bit more emotional, still have the facts, get them to look at the person that's in front of them, hopefully have a little empathy towards them, use the knowledge of what you did with the legislators and the emotions to get across of them that they might be able to help that person have a better life by doing something a little bit different than they would have done. I really think it's a two-pronged approach. I think your best bet is to have both. You need the story because honestly what does motivate us. Now, it numbers are important and understanding that the bottom line on how not supporting people is going to

increase people going into the system, which ups the cost of your community or your state. But you also really need to understand the stories and the why behind why it's so important that we address it. And I think when you bring someone's story, it creates that sense of urgency too, to understand this could have been your son, your daughter. Frankly, we look for judges or attorneys who have that personal connection. If you can find someone with a family connection or has lived it themselves, all the better to have them tell it from their perspective of why this issue is so important. So when we go in and we create these disability response teams with our chapters, we ask, who's already involved? What kind of training are police getting are your

local prosecutors getting? Is there someone there who has a son or daughter with an intellectual developmental disability or a family member? And let's start with where you are at and what you have. And we'll just come in and support that and provide a template of how you can grow that in your community. I've heard that one in seven people around the world, either no someone that has someone that's autistic in their family. I've heard one in eight people around the world has a mental disability of some sort. Those numbers are pretty staggering. With those kind of numbers, the possibility of you coming in contact with someone that has one or both of those scenarios.

Now, those people can be law enforcement, DAs, ADAs, judges. it can cover the whole judicial system and beyond. Because of that, what seems to be the issue to why we can't get them more involved even though it is getting better in some areas? I think still there's a lot of disability that remains invisible in our society, and especially mental health stigma,

the stigma of being able to talk about your mental health. We know that's been true in policing for forever until more recently now there's a lot more talk about mental wellness and policing. But there still is a stigma of being able to openly talk about this. Imagine being in the criminal justice system and stigmas that you may face. Imagine having autism or another type of a developmental disability and knowing that if you say something in jail or in prison, what that could do or what that could mean. So I think there's still a lot of this not being talked about or fear.

of talking openly about disability, which can impact the ability to know the true numbers. But we still don't have a lot of good screening tools either to get to exactly how many people are affected by different types of disabilities. We do know from the Bureau of Justice Statistics there's data specific to the number of people in prisons and jails. Two in ten prisoners and three in 10 jail inmates reported having some type of a cognitive disability. That's a pretty broad term that they use there. It includes people with Down syndrome, autism, dementia, learning disabilities, intellectual disability, and traumatic brain injury.

It would probably help us to know a little bit more specifically what types of disabilities that people have in the criminal justice system. But that's one example of how we're trying to. to get to the data so that we can know what kind of accommodations are needed. And the more we understand about the type of disability, the better we can pinpoint the accommodations and supports. Yeah, that makes sense. When you meet with a person for the first time, it can be a judge, a DA, anyone within the legal system. You tell them what you're trying to do. What's your approach? You don't know where they stand. You might know a little bit on where you're,

you think they stand, sometimes your perception is not always correct. What's your approach in talking with them, discussions, trying to show them that they hopefully will look at it in a different view than what they might have? I think we often start with thinking through why they signed up for this job. And this is, when you understand disability better, you do your job better. If you're really out to prosecute a case, then you need to understand within that case that this person has a disability. You've got to understand the facets of that. Who do you reach out to understand it? Who's there to support that help? Whether it's someone prosecuting a case, someone defending a case, a law enforcement officer wanting to do their job well, the more

you understand how to approach someone, the safer everyone can be. So we try to really posited as you want to do the job the best way you can. We want to help you do your job. So we just want to share about why it's important to understand about disability so that everyone can walk away so that everyone deserves justice. So why are people with disabilities any different? But the truth is they aren't getting it. And this is why we can start there and give very basic examples of how

injustices are happening. And a lot of times people just don't know. They don't know. It remains invisible. I don't even want to think about the number of victims with IDD all over our country, all over our world, where it doesn't even come to the light of day. Where do you think that trauma goes? There's so much trauma out there that's just simply unaddressed. Yeah. I have spoken with several different people, both on the mental health. side and the autistic side that have tremendous success stories. How do we get those success stories to these people that might be questioning it because of the stigma? And there's nothing better than showing somebody a situation to where it had the worst case scenario with no hope, but yet

it succeeded and this person went on to do really good things not only in just a local area, but statewide in some cases and some cases even beyond that. How do we get through them that, hey, don't look at just a negative, look at all the possibilities. Absolutely. I love that you said that because a lot of the work that we've been doing through the center has focused on some of the harder issues like sexual violence of people with IDD. And it's so hard. hard to bring that message because people feel like what can we do, especially if someone doesn't use spoken language to communicate? How do they even report? And we have a project right now funded through the Office of Violence Against Women that we're working on that very

issues. So we always bring that there is hope. The problem is when people have to be silent and when we don't give people the tools to even advocate for themselves, that's been the problem. The bigger problem is that nobody has the tools or ability to talk about, the injustices that they're facing. But I work with a couple of amazing people, one that I've worked with many years, who was a survivor of sexual violence, and one that I've worked with since the center started, where they have used their platform and their story to really help change. the narrative and the understanding around these issues. Absolutely change can happen. But we've got to get more focus on these issues so that there's more support and more acceptance to want to talk about it. I think the stories are there waiting to be had, but there's still a lot more in terms of figuring out how to bring, I think, more collaboration to the table between the disability

world, the victim advocacy, and policing. That's what NCCJD, our National Center, was set up to do, is to create that collaborative space so that we can learn how to work together to raise this issue. But having people with disabilities who've lived it, leading that effort is what we're really seeking to do and bringing their story forward. I think people who have lived it and bring their story are the biggest hope that we have because we all can feel and see and taste and experience through their stories that something can change. But just relaying it ourselves is not near as strong as hearing it from them directly. How do we get more people like that to get in front of people to tell them their stories? We ourselves have experienced at the center difficulty in finding

those stories. It's, we have, as I said, our national information referral line that we will look for stories through there. But I think there's a double stigma with disability as well as, say, being a victim of a crime or being a suspect of a crime. It's almost like you've got dual stigmas going on. And people, I think, don't always feel comfortable talking about the reality of their lives, what they have faced or what they are facing. And sometimes even because they're in the system right now, they can't talk about it. So the nature of what we're trying to raise awareness about makes it that much more difficult to bring these stories out. And often it's people that have already had a certain number of years of healing or families that now can talk about it.

I think that's one of the reasons why it makes it challenging. Yes, I can understand that for sure. There is a certain perception of it and people don't get it. When I first started my podcast, I was one of them. The more people that I spoke with, the more people I had on my podcast, the more I started understanding what their lives are like every day. one of the big things that I did find is that everything I thought was completely wrong. The same thing can be said about mental health because there's a lot of things there that people just do not understand either. So the people that lived it every day are the ones that taught me what I know today. Sad part is bad things happen. We don't understand it. And those that do not understand it, make judgments of toss them in jail, throw away the key when that's not the

answer at all. What they should know is help them into a facility that can work with them every single day to give them a chance of having a better life. Absolutely. That's called criminalizing people with disabilities, whether it's a mental health disability or it's an intellectual developmental disability like autism, that has been a huge issue in our country because there is simply nowhere else for people to go. And the default has been our criminal justice system. And because people may show different behaviors, that can be seen from law enforcement as you're not listening or not respecting. It can be behaviors that are consistent. to people who don't understand disability.

And I often like to explain it this way because we often talk about it as crisis in our country, looking at when someone's in crisis and what do we do and crisis intervention. And so I often explain it when we do trainings that the crisis is in the eye of the beholder because what looks like a crisis to a law enforcement officer may be an everyday thing for someone with autism. and for example, someone who's stemming, that could come off as, oh, that's concerning behavior, but that's actually how they're able to calm themselves down. So it's these misunderstandings, miscommunications going on, that it's really on us as a society to understand better so that we can be more inclusive.

But that means we have to be educating and being willing to hear each other out. when it comes to building more inclusive systems, including within our criminal justice system, to really understand disabilities, be able to provide those accommodations and long-term supports so that people have other options than just calling 911, for example.

That was the whole purpose of 9-8-8. And I don't know if I mentioned that when it comes to mental health, people with intellectual developmental disabilities are more likely to have a mental health disability somewhere between 30 to 40 percent more likely. So there's this organization called the National Association of Dual Diagnosis or NAD, where that is their whole focus, is that specific population. And I've been working with them off and on for many years around criminal justice issues, too. So that is important to keep in mind that there's that intersection of disability.

Absolutely. The one thing that I've learned doing this podcast from so many different people, they found out later in life they was autistic. But before that, they were either ADHD, bipolar, or whatever it might be. And then many times they were autistic and found out later on they had one or two different diagnosis that would overlap each other. Absolutely. And also an officer or an attorney, whoever's working with the individual, they don't have to know exactly the disability. They can just ask, what do you need help with? What accommodation do you need? We often say it's not about you trying to figure out the disability as much as it is having that willingness to accommodate and just knowing that there are people with different disabilities. And that's what could be going on here. Did I think about that? Did we stop and slow the situation down and think this through? Or think about, does that victim need an extra support? What is it they need? So a lot of this can be addressed with what we do know today. So that's just an important message. Yeah, absolutely. In closing, what would you like to leave us with that you think is very important for them to hear and understand? The one I just ended on, which is to keep an open mind around people with autism and other developmental disabilities who are at risk of getting involved in the criminal justice

system are already in the system, to think much more deeply and broadly about why they are there, what's going on, and how you can create change for that person. We know that change can happen both on an individual level just by helping to identify supports for someone, but also at this systemic level. So we can do better in our systems to collect. together to provide those kinds of supports. And people really can make a huge difference in one person's life. I've seen it many times through the National Center. And you may think you're not doing much of anything, but just making that one phone call or doing that one outreach to another agency could really mean a huge difference in the life of someone. So please do all you can.

And feel free to contact the ARC in our National Center to be part of that solution. We are always looking for help and others to come alongside and help us do the work. Yeah, great. Well, I really appreciate you coming on. It's been great. Thank you so much, Tony. Appreciate the opportunity. Absolutely. The pleasure's been all mine. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to Tony Manor. Antor.com. Contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not me, the world, the conversations

we're having, and the inspiration our guests give to everyone, everywhere that you are not alone in this world.