Nicole Clark: Expert on Autism Awareness Discusses the Latest Advancements in Treating This Population

At Highmark Health, we believe what makes us unique makes us better. Our differences broaden our perspectives and foster a variety of skills to complement each other, creating a stronger and more vibrant workforce. It's this belief that earned us recognition as the Best Place to Work for the 10th year for individuals with disabilities in a survey by the American Association of People with Disabilities and Disability:IN. We'll continue to celebrate and benefit from the inclusion of all people. To find out more, visit highmarkhealth.org.

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hey everyone, hi, welcome to the show. I hope everyone's having a great day. I know that Passover has started, so blessed Passover. And I know that Easter is on the way, so, uh, happy Easter. Anyway, I am so excited to tell you, wow, this show is really taking off internationally. I, I, as I've told you the last two shows, Germany has the largest listening audience, which, thank you, Germany, but even countries like Russia or China, even if it's only one or two people, because I see that you're listening to the show, I want to say, remember, one person can make a big difference. So what you need to do is go to any place venue that has English-speaking translation or just English-speaking and let people know about it. I know there's an American embassy because I've been to them in countries. So that's where I would start if I were you. Except don't know now that I think about it if there would be such a thing. Possibly not now that I think of it in China or in Russia, but I know they're every other place. So Australia, Finland, all of you, that's what I would do. So special shout out to you, Mr. Richard Roberts. How are you in Brazil? You know I love you and Gang Yang Cho. In South Korea and all of my friends in Asia that I have visited and spoken about the employment of people with disabilities. Also Yoshiko Dart, hello Yoshiko, special shout out to you. You know, as you all know, what I do for a living is I find people with disabilities employment in the STEM and healthcare area. And right now, we have a lot going on. We have a lot of opportunity. And I know that many people have lost their jobs. So if you know of anyone with a disability, and please remember that as you'll hear in a few minutes, there are non-apparent disabilities. You know, there are people with PTSD, there are people with cancer, diabetes, an emotional disorder, an anxiety disorder. Don't just think blind wheelchair and/or epilepsy, just like me. So if you know of anyone seeking employment, please get them in touch with us. Go to benderconsult.com, Bender, B-E-N-D-E-R, consult.com, to get in touch with us. Today. I have to thank Highmark, who is our sponsor, and by the way, the company that helped me get started right here in my hometown of Pittsburgh, Pennsylvania. And now this is my 30th anniversary, and last week, oh my goodness, it was the 1,000th episode of this show. Can you believe it? And you know who I have to thank? All of you, my listeners. Listeners, how about that 1,000th episode? Thank you all. And thank you all around the world that listen to this show. And today, as we are having Autism Awareness Month, I heard about the CEO of the Adult and Pediatric Institute for Health and Wellness, and about her work in the area, several, but with children with autism. And I thought, whoa, what a great person to have on. So I have this superstar chief executive officer who was gracious enough to be on the show today, Nicole Clark. Nicole, it is a pleasure to have you with me today.

Thank you, Joyce. Thank you for having me. And you say I'm a superstar. I feel like I'm small in comparison to you and everything that you've done for the disability community and just all the advocacy that you've done for people. So I'm, I'm the one who's honored to get to be on here.

Oh, thank you, but we are all in this together. And as you heard, I have people throughout the United States but also people throughout the world, and they always want to know more about the person than just me asking them specific questions. So if you don't mind, like, your story, where you grew up, you know, what happened after, um, and even at the end, I don't want to forget how to get in touch with you, you know, your email. But let's hear, let's hear your story.

Yes, ma'am. So I am born and raised in Florida. I'm one of the few. I know everyone comes down here, uh, later on often to retire down here in the beautiful state of Florida, but I am born and raised here. I grew up in South Florida. I went into the military when I was very young, so I went into the Navy. I was a hospital corpsman in the Navy. I was 17 when I joined. My parents had to sign away my rights because I wasn't old enough to do it myself. And I got stationed in San Diego for all 5 and a half years and different bases throughout San Diego, which I love San Diego, huge heart for California. Um, I did a year in San Diego in the hospital in Balboa, and then I did a year on the Marine Corps base, and then I did 3 and a half years on an aircraft carrier. And I primarily worked up on the flight deck, but I did a little bit of everything. Trauma medicine really grabbed my attention. When I was in the military, I really enjoyed trauma medicine. I also started to enjoy psych— psychiatric medicine. And so I got out of the military, continued with school, and I always say I didn't know what I wanted to be when I grew up because I went to a ton of different educational programs. I was bachelor's in psychology, and then I started working towards my master's as a licensed mental health counselor, got almost completely through that program when I realized that the school I was going to, I wasn't going to be able to work at the VA with the accreditation. And so I withdrew from that program, and then I went back, got a second bachelor's in nursing through a special medic to nurse program that was grant-funded for people that were medics in the military, and then continued on with a doctorate of nursing practice and psychiatric nurse practitioner. Realized I didn't want to do that either. I wanted to change healthcare system. I didn't want to just kind of work within it. I wanted to really disrupt the space. And so I went back, uh, got a master's in nursing administration leadership, and I am a board-certified psychiatric mental health registered nurse. And one of the things that I had to overcome throughout my journey, and it allowed me to kind of dig a little bit deeper into psych, was my own struggles with PTSD. My own struggles with anxiety, my own struggles with trauma, and having to do the work on myself and realizing that all it took in my life was a handful of people that were there to support me— providers, clinicians that I could talk to— and they changed my life. And so I wanted to be that for other people. And so I worked in a lot of high-level leadership positions within different acute care systems and hospitals. And I worked for the VA at one point. And when my— I have two daughters, a 12-year-old and an 8-year-old. And when they were— when my oldest one was about 1, we realized some of what we thought were her cute baby quirks maybe weren't just cute baby quirks. Maybe there was something else going on. And so we went down a path of figuring out what was really going on. And by the time she was 4 years old, uh, she had suicidal ideations. She had been diagnosed with anxiety, depression, complex motor stereotypies, sensory processing disorder, um, just a whole host of syndromes and disorders. And it never quite felt right. We never quite felt that we were getting anywhere with figuring out what was really going on. And so it wasn't until she was about 7 years old that I had finally brought up to her neurologist, do you think maybe this could be autism? And he called her name in the appointment. Brilliant neurologist, mind you. This is not, you know, for lack of better terms, for layman people, this isn't a quack that doesn't know. This is an absolutely brilliant person. And I say that because it makes a difference kind of in the story and where we're— what we're going to talk about today, a brilliant clinician. And he called her name and she looked at him and he said, no, she doesn't have autism, she makes great eye contact, but you should get her ABA therapy, it'll change her life. And so that took me down, it changed my life, it changed the trajectory of my life going through that process, it changed the trajectory of her life, hopefully for the better, we'll see, uh, there's ups and downs. But I dove headfirst into autism and I got certified in it and made myself more aware of it and opened businesses to help other kids with autism, adults with autism, jumped into advocacy work, and here we are.

Okay. I don't think I got that one part. Just so I understand, the doctor looked at your daughter and said, why?

She makes great eye contact. She can't possibly have autism. And this is such a— he's such a smart guy. He's such a great neurologist. But it really just hits home on so many myths and misconceptions about what autism is that even a brilliant neurologist who went through God knows how much schooling to do what he does, had that same myth, believed that same myth that if they make eye contact, they can't possibly have autism.

Unbelievable. I don't know why I'm saying that. I'm telling this doctor I would faint and be sick after, and he told me it was a female hormonal problem. And that's the accident I had. At a movie theater where I fell and fractured my skull and had a brain hemorrhage and brain surgery. Because what it really was is that I had epilepsy. But it is amazing how I believed him because he was a doctor. Obviously you were smart enough to know that wasn't true.

Well, you know, I— there's a saying that I heard once and I love it, and, uh, Scared mom does better investigative research than the FBI. And I, I think that that's really true. I was, I was scared, you know. My little, my baby is talking about not wanting to live, and I wasn't going to stop until I figured out, A, what do we call this? What's really going on? Because then, B, now I know how to treat it. If I can put a word to this, I know what direction to go. I know what therapies to get her. Um, but I also was terrified of the autism diagnosis. I didn't want it to be an autism diagnosis. That scared the daylights out of me. I can fix your anxiety. I can fix your depression. I can fix your self-harm. I can't fix autism. So I struggled even being in the field and being educated. To come to terms with that diagnosis and what that meant for my life and what that meant for her life and this baby. Then all the dreams that I had for her— do I still get to have those same dreams? What does that mean for her future? And so I struggled with that. And so I can only imagine how lay people struggle with that, not in the field. And so that's why I do what I do today, because I don't want another family to have to struggle like I did. We need to make it easier for people.

Wow, what a story. I'm sure many of my listeners can relate to what you're talking about. I did want to say, Nicole, thank you for serving our country. My father, who passed away 2 years ago— is it now? No, 3, 3 years ago— uh, was 97 years old when he passed away. And he was in the Navy in World War II.

Wow. That's amazing. Well, thank you for the recognition. And thank you to your father and to you as a child of a military member. It's a little bit tough because that's another aspect. The military doesn't do a whole lot to protect our mental health. And they don't realize the impact that that has on a family system. When you're exposed to that much trauma, it doesn't just affect the veteran. It affects everyone in that veteran's life.

Yeah, and you know, veterans today, as I know you know, do not get the support that they need. And you know, we, we, that's so sad. So Nicole, the Adult and Pediatric Institute for Health and Wellness, tell us, what is that institute? What is it?

Yes, so we are a comprehensive psychiatric practice. The first company I had opened after my daughter had received her diagnosis, and then my younger one also was diagnosed with autism. So both of my girls are on the spectrum. My younger one also has dyslexia, so she has a learning disability as well. And the first company I opened was an ABA therapy company. And it's because I had been around so many different therapy modalities in my career and been trained in, in different therapy from a nursing perspective. That I realized that ABA therapy was just really— it had a lot of improvement, let's just say. There was a lot of room for improvement on how ABA therapy was delivered, and it was pretty infantile in its becoming a formal, a more formal therapy modality. It's been around since the '80s, so this isn't a new therapy. B.F. Skinner was the head of it in behavioral therapy, but I could do a lot of good there. And so the first company I worked COVID travel contracts and peds trauma to raise capital for my first company. And I opened it with my partners and it went from there. And so it took off. I wanted to do a little bit more though. I didn't want to— I missed working with adults. I missed working in psych with other families or other individuals besides just autism. And so I met my partner, and she is absolutely brilliant, and her name is Dr. Mariel Perelattisi Morales, and she lovingly goes by Dr. P. And she is a child, adolescent, and adult psychiatrist trained out of Columbia University. And so we open this company, and we are comprehensive psych, and we can do— we see ages 18 months all the way up to 65 years old. We might see a, a child needing an autism evaluation on Monday, and Tuesday we might help an adult with bipolar with their medication. So we do medication management, full psychiatric evaluations, autism evaluations, which were kind of unique in that we'll do autism evaluations and then talk therapy as well. And we have some big exciting services that we're adding on in the future. Too. So I would say stay tuned to that. I can't say it now, but—

and is this all located in Florida then?

Uh, yes and no. So we are primarily a concierge psychiatric practice, so we're cash pay. Uh, my partner and I were both pretty burnt out on the traditional model of healthcare, of that turn and burn. You get 15 minutes to see a patient and good luck solving all their problems in 15 minutes. And so we decided not to play the games with insurance. We wanted to deliver healthcare the way that healthcare should be delivered. And so because we are primarily cash pay, self-pay, and we have different funding sources that we can help people that could never afford us, we opened a nonprofit foundation actually to cover evaluations for kids that will never be able to afford us otherwise. They still deserve access to high-quality care. Regardless of your income level, in my opinion. But we're able to do a lot more with telehealth. The rules that we have to follow, we don't have to follow insurance rules. We have to follow medical board rules, right? And Department of Health rules. And we have to follow DEA rules, especially for prescribing. But we don't have to follow insurance rules. People are paying for their own care. So we are licensed in Florida and Virginia. So we have some clients that we see in Virginia. Uh, depending on licensure, reciprocal licensure, different states, we are able to kind of see clients all over the state of Florida. If we have a client that is in need of care, or I'm sorry, all over the country. If we have a client that's in need of care and let's say they live in South Carolina and a lot of the families will actually fly their child to us. To see them in person in the state. But if this is a client, then we can go to South Carolina and get licensed in South Carolina so that we can continue to provide care in that state to be able to follow our clients.

Right. Do you accept Medicaid? Because I'm trying to think here, what do you do if someone wants to see you but can't afford to see you? Do they need to go to that foundation, or what do you do?

So we find a way to help them. We find the funding. We've made great, just blow your mind, amazing community partners. So we are partnered with the Florida Elks. That's one of our largest autism testing programs, and they have covered the costs to 40 kids a year to get free comprehensive autism evaluations in the state of Florida, regardless of income, regardless of insurance. We have also partnered with our local school boards. In school districts, which they help cover the cost for psychiatric evaluations. We've partnered with the Children's Services Council and the Community Foundation in our area to cover autism and psychiatric evaluations for kids in our area that have Medicaid. We've partnered with other nonprofits to cover the cost for children that have Medicaid that are in their services, low-income, no-income families. We collaborate with our local free health clinic to help volunteer and donate our time. And so we find a way to make it work. There's a lot of families that call me and they need help. And I am not the type of person that can sleep at night not finding these families help, knowing I will never be the person that says, sorry, we don't do that. Sorry, we can't help, but good luck. I had too many providers do that to me when I needed help for my kids.

Yeah. I mean, that is wonderful. Absolutely wonderful what you're doing and what you do.

And so even if we can't— yeah, even if we can't help them, because we're not going to be everything to everyone, we will— I will point them in the direction of an actual human being that will answer the phone when they call. I'll find them resources.

And not have that 5-minute visit. You know, when people go, they're so nervous. Oh, am I going to get to say everything and what's going on? And, you know, I always have to tell people, listen, when you go, you are the customer. You don't be intimidated because this is a doctor, which is what always happens. You speak up, you say what's going on. So that's a great model that you have. That I'm sure if people got to talk more, they would have better diagnoses.

Absolutely. And better outcomes. And we can make a more educated treatment plan for them.

Well, how do people reach you?

They can find us online. So our website is www.pedsinstitute.com. They can find us on Facebook. They can give us a call or text us.— I just blanked. I'm so sorry. I just blanked on her phone number. 844-550-7337. This is what happens when you're a busy working mom that's doing 8 million things.

Do not worry about it.

Your brain just goes away.

Trust me. I've had far more interesting things happen on this show.

I believe it.

Yeah.

And we also— I recently created a podcast. Where it's the Adult and Pediatric Institute podcast, and anywhere that you listen to podcasts. And I love to share resources for free for people that are all over. I talk a lot about mental health resources, autism resources, dispelling a lot of myths and sharing actual factual information related to autism. So they can listen to the Adult and Pediatric Institute podcast. And reach out to us through there.

Wow, that is great. And how are your daughters doing?

They're doing okay. Every day is ups and downs, you know, and they're, they're individuals. And with autism, you never know what's going to happen. And I'm really good at pivoting and trying to meet them where they're at. They have a lot of services going. My kids are still on waitlists for certain services. Oh, we're not immune to that.

I know, that's terrible. It's terrible. Those waitlists are terrible. You know, one thing that I wanted to ask you is, so if someone needs your services, they should just email the way you said, or call, or what's best?

Yeah, any of the above. So they can call, they can email. Again, we're not a traditional healthcare model. We're not a turn and burn based off of a quantity model. We're a quality model. We don't have to worry about billing once every 30 minutes for a new patient. We get to really spend time with these patients. And so we're a higher level. We're more customer service oriented. And so whatever makes sense for that family, because we also deal with special needs families. That's exhausting. If it's, we were only banking hours and oh no, we're only gonna see your kid on Monday at 9:00 AM. These kids miss so much school. Parents are missing work constantly. When you have a special needs kid, it seems like you maybe, if you can get to work 2 days a week, you're winning that week. You're always having to miss work. And then these parents are at risk of losing their jobs. And so we make it easy for them. We will see clients on a Saturday if that's the only time that they can get their kid seen. Hey, we're going to show up for you on a Saturday. We will see them after hours. I will be on the phone with parents doing free consultations or pointing them in the right direction. Intensive case management, 7:00 PM on a Friday night. I have no social life. I have two special needs kids. We don't do anything. We stay home, so I might as well work. So I might as well work and help another family because that's also my tribe and that's my community. And I learn so much from the families that we work with. And then I get to share the resources that they found and we create kind of this community of special needs parents to share resources and support one another. And sometimes they just need to call me and I just need to listen to them and I never charge them and they just need to cry. On the phone with someone else that gets it. And I feel very fortunate to be that person for them.

Well, you are a wonderful person, Nicole. What is that? Tell me that saying again about mothers. What is that saying?

A scared mother does better investigative research than the FBI.

Well, you know what? I always tell, I always tell parents of children with disabilities, Look out. When you have a mother of a child with a disability, you— that's who I want on my team. Oh yeah, you know what I mean? That's who I want on my team. But with that, hey, here it is. Yes, it's time for Mathis on the Mic. But today we don't have Jennifer because she is doing something very important. She's always doing something very important. But Holly O'Donnell, oh my God, Holly O'Donnell, the CEO of the Bazelon Center on Mental Health Law. You know, Holly, I'm sitting here thinking, okay, happy Holly. I couldn't get that Mathis on the mic thing like you came up with, which she will forever love you, ever. And you know, I'm on the board of the Bazelon Center on Mental Health Law, and I just wanna say, to all of you that they are fighting the fight. We— this is the greatest organization. I'm so proud to be on the board, and Holly O'Donnell is absolutely a superstar champion, great friend. I love her. Let's hear the news, Holly O'Donnell. What do you have for us today?

Thanks, Joyce Bender. Um, congrats again on your, um, 1,000th episode last week and the launch of Math on the mic. I loved hearing— I joined a little early, so I loved learning something new about you, Joyce Bender. My grandfather was in the Marines in World War II. Hmm. And Nicole, I also love that quote of, of the moms because I had one of those moms. And so I think you are exactly right. And thanks for all the work that you're doing. So as Joyce mentioned, Jennifer Bender will not be able to be on the show every single week. So lucky for me, I get to come off the bench and stand in for her. And just a plug for last week's, because it's still relevant, Joyce Bender. Jennifer Bender talked a lot about Medicaid and you brought it up in your conversation with Nicole. You know, I would encourage your listeners to go back and listen to that as Medicaid is still, you know, we still have fights ahead. So for the news today, well, what is today? What is today? April 15th. Joyce Bender, you know what it is. Nicole Lekus, you know what it is. Every single listener knows what today is.

It's, it's a national holiday.

It's Tax Day. So for those of you who have already filed your taxes, um, good job. For those of you who, uh, have until midnight tonight wherever you are in the United States, um, good luck on completing them or filing your extension. So since the Internal Revenue Service, the IRS, is on our minds I thought I would share what's been in the news a lot lately for nonprofit organizations. As your listeners know, nonprofit organizations, sometimes referred to as NGOs or charitable organizations, but to the IRS, they're known as 501s. And 501 refers to a section of the Internal Revenue Code that exempts organizations with this 501 status from paying federal taxes. There are about 1.7 million active nonprofits in the United States, and they employ over 12 million people. So they are important. The Bazelon Center is a 501. American Association of People with Disabilities is a 501. Disability Rights PA is a 501. Uh, your Guest last week, Pittsburgh Action Against Rape, it's a 501, and of course the Bender Leadership Academy is a 501 along with most colleges and universities and hospitals. So nonprofit organizations are extremely important to the disability community. Number one, for advocacy. Nearly all disability advocacy happens through or with the help of nonprofits. They're also important for services and programs. Again, I'll refer to your mentoring program, Joyce Bender, um, as really important. And we have seen nonprofits in the news a lot recently. There's been a lot of litigation to— that nonprofits have come to file against the government's funding freeze. And as we see these funding freezes and threats of funding freezes, it's important for all of us that are part of nonprofits because we want to keep continuing to do our work. We don't want to be part of the news of 501 organizations getting their funding taken or frozen, um, so that we can continue to do this important work. Because again, so much advocacy for the disability community happens, you know, through or with nonprofit organizations. Many moms that you're talking about have started nonprofit organizations, um, so it's really important for all of us to review the rules and regulations at the state and federal level to address any gaps. We don't have to file taxes, but we do need to submit our 990s on time. And so everybody should look at that. We need to maintain our charitable registrations. And we need to educate staff on the difference between lobbying and advocacy. And I also think it's really important, and this is not a plug for the Bazelon Center, but for your listeners, nonprofit organizations right now If, if you know of organizations that funding has been frozen, maybe an internet one that works internationally, or, you know, maybe it's a university that you went to, now is the time that you can make a donation. It matters. And to support because it really matters for all of us that care about nonprofit organizations and particularly disability community. And so I thought I'd highlight a few resources, ones that I find personally helpful that might not be the most common that people find, but the National Council on Nonprofits is a go-to one. There's— and if you— if folks are interested in some of the issues that are facing organizations, The Stanford Social Innovation Review is also really excellent, as is BoardSource. Um, so I think it's all up to all of us that are working with and for, um, nonprofit organizations that work in the disability community to really make sure that we've buttoned everything up, um, so that we can continue to do our important work.

Oh, you know what, Holly, that is so true. I always tell people, if you don't support, you know, one of these organizations that is specifically important to you— okay, epilepsy, you know, I'm the chair here in Pittsburgh. All right, let's say you are a parent of a child with epilepsy or a person with epilepsy. You need to make a donation just like What you're talking about at Bazelon, or Nicole, at your organization, you have a foundation. Don't sit back and say, oh, that's so important to me, and not do anything. You know, when you're a not-for-profit, you can have a zillion dollars in restricted funds and still not be able to turn the lights on. So you have to Take time, make a donation. Um, what is your website, Nicole?

My website is the www. Uh, pedsinstitute.com. And then up at the top it says foundation. And I think it's important to piggyback what you guys were just saying. Your donation doesn't need to be thousands. Just even if you're doing a $10 donation, that helps. That makes a difference. Those small $10 donations, $20 donations to these nonprofits, that adds up.

Yes, it does. And Holly, how would someone make a donation to Bazelon?

Sure. We also have a website where you can make a donation. And our website is www.bazelon.org. And I'm going to spell Bazelon. It's B-A-Z-E-L-O-N. And there's a big donate button.

Go to the donate button. No donation too small, although we like big. So does Nicole. Holly, before we move back to Nicole, could you just, you know, give a short what is Baselon to our listeners?

Of course. So the Bazelon— it's called the Judge David L. Bazelon Center for Mental Health Law, and we are just over 50 years old, and we protect and advance the rights of people with mental disabilities through litigation, policy advocacy, technical assistance. And our goal is for people with mental disabilities to live in the community with supports and services they need, just like people without disabilities.

Oh, thank you so much. Well, Holly, even though you're not Jennifer, you're still on Mathis on the mic.

I know, I'm excited to be the first person. Um, actually joining you from Chicago, Joyce Bender.

Oh, okay. Well, aren't we— like, you're there on business, I assume?

I am. And I had pizza last night. It was delicious.

I was just going to ask you if you had— there you go. We're missing out there. Well, Nicole, you can see the great work Baselon is doing. And I'm even thinking how there are connections, you know, with what you do as a master's leader in registered pediatric Psychiatry, everything.

What is it? Alphabet soup. It's okay.

I'm going to go to your website, Nicole.

Psych RN. Yeah, I think that there's a lot of crossover work. And I love what you said, Holly, that the difference between an advocate and a lobbyist. You know, doors are shut on lobbyists. Lobbyist is, I think, a dirty word up on Capitol Hill, but not advocate. Anyone can be an advocate.

Yes, that's right. You can always serve. Um, and Nicole, you were talking about helping parents get services in a much timelier fashion. Tell us about that. What's it like right now?

Waitlists for autism evaluations all over the country are really extensive. So they're sitting anywhere between, depending on where you're at in our country, in Florida, for instance, you're looking at probably a 9-month to a 2-year long waitlist just to get an evaluation. Other areas, it's upwards of 4-year waitlist. One of the problems that we're having right now is with Medicaid laws changing, with the ACA laws and the ACA rules changing, Florida is, infamous, we're gonna say, we've gotten right up there with Indiana on one of the worst Medicaid-run programs in the country. Wow. We just did a big switch in Florida to Medicaid is now switching over to an SMO or a managed care organization type model where it's no longer the state is managing the Medicaid programs. Now it's UnitedHealthcare Medicaid or you know, Blue Cross Medicaid or Humana, whatever it may be. It's different private payers that are now managing and controlling the Medicaid programs and insurance for Florida. And so what that has done is now all of these providers that were previously credentialed with Medicaid now have to recredential with whatever managed care organization that the child is now a part of. That credentialing process can take upwards of 6 to 9 months. So now even if they were getting services before, they've stopped their services. And this is happening— Wow. —across the whole state. The other thing that's happening is the evaluations that they previously accepted, that Medicaid previously accepted for children, The— there's different autism evaluations that you can utilize. Um, one of them, neurologists tend to want to use the CARS evaluation is what it's called. And previously Medicaid accepted that evaluation for this kid. This kid started getting all their resources. They started getting maybe Social Security disability. They're in APD services. They are getting ABA therapy. They're getting OT therapy. All of their resources, well, now they changed the goalposts. They, they push the goalposts back further. And so now they're saying, oh no, no, we're no longer accepting a CARS evaluation from a neurologist who's more than capable if they specialize in autism to give this diagnosis. They're no longer recognizing that diagnosis. So they have denied the reauthorization for all of these kids and now they're requiring them to get a full comprehensive diagnostic evaluation. Which is incredibly lengthy evaluation. It's very time-consuming. That's one of the evaluations that we do at my practice. And insurance for this evaluation that takes upwards of really complex kid digging into the history, collecting all past medical records, parsing through all of that, doing the actual testing itself, multiple different tools, doing cognitive testing add-ons. Things like that. A really complex case might take upwards of 16 hours to do this evaluation. Well, guess what? Insurance is only going to reimburse maybe $200 to $600 if you're lucky. Oh my. So because they've made these evaluations so complicated, and so all the providers that used to accept insurance to do these, to do these evaluations, they've stopped doing them. They're pro— they would go under if they took 16 hours, if they cleared a provider's schedule for an entire day for $200, $300, they, they'd go under. They wouldn't be able to stay open. So they've stopped doing them. So now more kids need the evaluations cuz the Medicaid and OCCA rule changes, less providers are doing the evaluations. And so now wait lists are going through the roof. And these families cannot get their services started again until they have this evaluation done. And is, is this for all disabilities, Nicole, of children on Medicaid?

For, I mean, for kids on Medicaid, is this just for all disabilities or autism?

Autism seems to be one of the more— yeah. Oh, so depends on the private payers. So the private insurance payers, a lot of them also require these really comprehensive— some may say overly comprehensive— in-depth evaluations to approve ABA therapy and other services for kids with autism. But it's because autism care is costly. ABA therapy costs a lot of money. So if insurance companies can prevent someone from getting the approval for ABA therapy, they save a whole lot of money.

You know what I mean? I'm thinking to myself, people on Medicaid, child with autism, already on the waiting list. Now they have to be reevaluated, a new diagnosis. Wow. I mean, this parent, what, you know, what are they going to do? I mean, that's so involved and sets everything back. Oh my God, this—

and a lot of these kids, Joyce, these are kids with severe maladaptive dangerous behaviors, self-harming behaviors, elopement. We know drowning is the number one cause of death for children with autism. They have an affinity for water, which next month, by the way, is Water Safety Awareness Month. But these are kids that without their aid, they're going to walk out into traffic. Or without their aid, they can't go to school. Without their— so now what's the parents going to do? Stay home for the next 6 to 9 months? Well, now they're in even more of a crisis because now let's say they had private insurance before and it was private, a private payer or commercial payer wanting to, you know, giving them pushback to get a new evaluation. Well, now they've just lost that insurance. And most of these kids have a lot of comorbidities. There's a lot of GI dysfunction. There's a lot of seizure disorders, high prevalence of seizure disorders. You talk about the epilepsy in kids with autism, it's very high comorbidity. ADHD, suicidal ideation, self-harming behaviors. This is literally life or death for a lot of these kids. And these families, if they don't get these services, their child could die.

Oh, this is just so terrible. So terrible. I have to intervene and say, listen, you have to write to your senator and congressman. I know you're going to think, oh, why bother? Bother? Because everyone else is bothering. And you know, remember, Some of those people are running for office in 2 years. So if I were you, I would be saying you won't have my vote unless you support not harming Medicaid, you know, and any of these other services, because we got to do something. You know, I'm thinking to myself, oh my God, what if the person lost their job? They're in D.C. and they look anywhere, lost their job. Now they don't have that insurance that they had before, and now Medicaid's cutting back, and they're on this big waiting list. They can't pay, then Medicaid can't have the aid, can't go to work even if you had a job. I mean, this is like a total nightmare.

Please, it's an absolute nightmare. We're seeing it. Yes, absolutely. And I work— I'm working on creating an OPAGA study with my local representative for my region, Representative Trebolsi. She is absolutely fantastic, has a huge heart for special needs population. And we're looking at, we've got to find a loophole. I, we can't, I'm not going to fix Medicaid's problems in our country. That's way above my pay grade. So instead, the approach that I tend to take to these things is how do we work within the system? How do we find a loophole within the system to get the same outcome? Right? Because we can't fix— we can't change the system. That's too big. We can work towards changing it, but I'm not going to change it tomorrow for this family in need. So instead, how do I work with other disability advocates? How do I work with other attorneys, disability attorneys? How do I work with my local representatives, my state representatives? How do I work within the confines of the system to get this family help. I don't care how we do it, we're going to do it. We're going to find a way. And so we're hoping to get some— I really am pushing to get some autism legislation on the floor for the next legislative cycle next year. I'm working with my representative. Like I said, we're about to do an OPAGA study to really get down to the bottom of what really needs to be fixed here on these waitlists. Do providers need more education? Do we need more funding? Do we need to incentivize providers that are willing to do these tests so that it makes sense for them to keep doing them and accept insurance? Um, you know, and a lot of that, it has nothing to do with me. We don't even accept insurance. It's more of recognizing that I can't be the only one working on this problem. I need the medical community to come together. I need the advocates to come together. Because we see it's happening. If we all come together, we have a huge impact. No telling what we could accomplish if all of us can come together to improve services and resources and available options for children and adults with special needs. There's some brilliant people out there. Let's put our minds together and solve these problems. And I have no doubt that we're going to solve it.

You know, from the disability side, Yoshiko, who I know is listening right now, is the wife of the great, late, great Justin Dart Jr. And he seemed to be the only person that was able to get everyone together. I mean, he went around the United States with Yoshiko like 5 or 6 times prior to the ADA being signed, saying, "Come on, get out there. You got to support, got to speak up, or we won't get this signed." And he was able to unify and get a huge mass of people. We need that huge mass of people, as you just said. Yeah. Together. Together.

That's what we have to do. We're getting there. You know, people are getting angry and they're getting loud. Getting angry is good.

Getting mad is good. Getting angry and mad together right now is very important. Well, Nicole, I want to tell you how much I appreciate you being on the show today.

Thank you. Thank you for giving me this platform to share what's going on with this community.

Well, they heard you all the way around the— they heard you around the world, Nicole. Good. So, let's give everyone that website one more time.

Yes. www.peeds, and that is p-e-e-d-s, institute.com.

So, Nicole, what message would you like to leave with our listeners today?

I think a final message is believe in yourself, believe in what you're doing and whatever that may be. And if you're a parent of a child with a disability, don't ever let anyone gaslight you into thinking that you don't know your child best because you do. You keep pushing, you keep doing what you know to be right for your child, 'cause there's people out there that really care and they wanna help.

Keep being loud. That's right. And you know, Nicole, I hope everyone takes your advice on that, because unless you believe in this fight with passion, we can't get anywhere. But you can. You can do that. You can do that. Well, Nicole, we end every show with a quote. And today, this is someone I've had on my show, actually. Acceptance is the key to unlocking the potential of every person, said Temple Grandin, autistic disability rights champion. I love her so much. She is amazing. Oh, she is amazing. She has another quote I love. And that is, "We are different, not less." Oh, I love that. We are different, not less. Uh, and hey, Temple, that was in honor of you for Autism Awareness Month. I, I just want to remind everyone, if you want to share this show with someone, if you're thinking, "Oh my God, I wish, uh, the mother of this child or this family member heard this show, you know what you do? You go to Spotify, Apple, Amazon, every one of the social media platforms. My show is there, Disability Matters with Joyce Bender, on voiceamerica.com. And when you go, look for Nicole Clark and share the show with others. Don't forget, Well, I have another quote that I always say at the end of the show, and that is, "When you get up tomorrow, remember, choose joy," said Mary Brooker. Talk to everyone next week. Have a blessed Passover and a happy Easter. Thank you all so much.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.