Disability and Progress-October 24, 2024- 75th Anniversary of United Cerebral Palsy!

[00:01:01] Speaker A: This is KFAI 90.3 FM, Minneapolis and KFAI.org thank you for joining Disability in Progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the host of this show. Charlene Dahl is my research PR person. Hello, Charlene. [00:01:19] Speaker B: Hello, everybody. [00:01:20] Speaker A: Erin is my podcaster. Thank you, Erin. And Miguel is engineering this current episode. Today we are speaking about cerebral Palsy and celebrating the 75 year anniversary of United Cerebral Palsy. We have with us Armando Contreras, who is president and CEO of the UCP United Cerebral Palsy and also Valerie Peraccini. Hopefully I got that right. Who is the head of the research committee at upc. Hello, people. [00:01:58] Speaker B: Good morning. [00:01:59] Speaker C: Thank you. Good morning. And I really appreciate your invitation to kfai. It's an honor to be here. I brought an expert with me who's also Valerie Piercini, who is the VP of Clinical operations and innovations and also the co chair, as you mentioned, Sam, of the UCP Research committee. And I just, I wanted to bring her on because I know that there was some specific research questions that I thought she would better answer than I could. But we make up a good team here. [00:02:37] Speaker A: Excellent. Well, let's start out by discussing for people who may not know what cerebral palsy is and how it affects people who those who are living with it. [00:02:52] Speaker C: Valerie, I'll have you answer that one. [00:02:55] Speaker B: Okay, awesome. Thank you. And thank you for having me. So cerebral palsy is actually the most common physical disability in childhood, but it's actually a lifelong disability. A million people in the US live with it. What is while cerebral palsy is quite a bit of an umbrella term for different conditions, what entails cerebral palsy or what makes the diagnosis of cerebral palsy is it has to happen in the first year of life. So it can happen prior to birth, it can happen at birth, but within that or within that first year. Typically it's a brain injury, it can be a brain abnormality, but there's different causes. And so that's why Cerebral Pals is actually so diverse, because there's different etiologies behind the diagnosis. [00:03:53] Speaker A: Excellent. Thank you. Armando, you're the CEO and president of United Cerebral Palsy, and I was wondering, it's your 75th year anniversary is my understanding. And can you tell us what some of the most significant milestones that the organization has achieved under your leadership? [00:04:20] Speaker C: Yeah, well, Sam, glad to answer that. Let me just go back quickly to 75 years ago when this organization was founded by parents who really were looking for Enhancing the care for children that had cerebral palsy. But not only that, back in the day, there was a culture that if you had a condition, a disability, then you would actually go to an institution. [00:04:50] Speaker A: Right? [00:04:51] Speaker C: No, parents were really concerned about that because they didn't want their kids going to institution. They wanted them to be part of the family, part of the fabric of society. And that's where it all started 75 years ago. Fast forward. Today there are still institutions, but very, very few in the United States. Now we have home and community based services that actually offer services in their respective homes. You have families that actually are part of that program. In addition to that, we have great therapies that are out there that not only assist children and adults with cerebral palsy, but other conditions like down syndrome, autism, developmental delays. We have employment programs, we have transportation programs. So we've come a very, very long way as far as providing vital care, providing upper mobility, providing children and adults to advance in this in our society, in the United States. So we have 55 affiliates in the United States, two in Canada that provide direct services to children and adults with various conditions. But obviously our focus is on cerebral palsy. We serve 155 in children and adults on an annual basis with various conditions. And one of the things I have to say is that, and because I have Valerie here is what I'm really proud of, is the breakthroughs and the discussions that we're having related to research related to early intervention. And also this very important topic that's important on a global scale, which is the. Oh, my apologies. It is the early detection. So early detection is super important for us. [00:06:48] Speaker A: So can you tell me how has the disability landscape changed over the last year? [00:06:56] Speaker C: I think in the last year we continue to look for greater accessibility for people with disabilities. And I'm talking about greater access to transportation. There's a lot of discussions about that, even people, because I'm in the airport all the time, I'm beginning to see more people going on planes. But there's still an access issue, right? We're beginning to see more. We're trying to get funding for people that are actually want to have a career. There is a Social Security cap that's happening today that does not allow for people with disabilities to have a savings of more than $2,000. So we're that discussion as advocates. There are some champions in Congress and in the Senate, a bipartisan effort that's moving towards increasing that cap from 2,000 to $10,000, which are is the assets, which means that you cannot have more than $2,000 in savings, which is ridiculous. If you want to have a career and you have a disability. If you're married, I think it's $3,000. But they're trying to increase that cap to $30,000. We're also looking for the people who serve direct service professionals to get a meaningful wage. Right. [00:08:23] Speaker A: I want to stop you there for a minute. So does this savings mean retirement as well? [00:08:29] Speaker C: It means, I think in every level. I think if you, if you have a car that's worth over $2,000, you have savings worth $2,000. Or if you have retirement. [00:08:38] Speaker A: Oh my. [00:08:39] Speaker C: Then the risk is, Sam, is that you can lose. [00:08:42] Speaker A: That's awful. [00:08:43] Speaker C: They can suspend your benefits. That's the. That's a critical part. Or they can actually take away your benefits. That's why it's so important. It's an antiquated law that we're trying to push for along with other national organizations as well. [00:09:01] Speaker A: Can you explain some of the different types of cerebral palsy and how they vary in terms of symptoms? Because I presume not. I mean, obviously not everyone has the same level of cerebral palsy or seriousness. I don't know if that's probably not the right word, but the same severity. [00:09:24] Speaker B: Severity is the right word. Yeah. So going back to what I said, cerebral palsy is quite diverse. I think when the average person on the street thinks about cerebral palsy, they often think of the person maybe that's non mobile or nonverbal. But cerebral palsy actually could be seen as a spectrum. And some of that's because there's so many different causes of cerebral palsy. So we don't use the word spectrum for cerebral palsy like we do autism, but there is dyslexia. Discussion around that amongst the experts. But cerebral palsy can affect different parts of the body. So you can have an individual who's just affected in their legs or one side of their body. Sometimes it's all four limbs. So that's a different type of cerebral palsy. And that's what we call a spastic cerebral palsy, which is the muscles are tight. So within that, like that you have that type of cerebral palsy. Spastic cerebral palsy, you have dystonia, which is. Or dyskinetic cerebral palsy, which means that they have movement but they have excessive movement. There's like a writhing that's a little less common. Most of us are familiar with spastic cerebral palsy. And even within that type of cerebral palsy, spastic cerebral palsy, that Being affected on one side is actually more common, and then. And then the other type, that or thing that you refer to is severity. So severity can be where a child is walking, but maybe they're asymmetrical in the way they walk. They could even run. But like as a child, they meet motor milestones just quite a bit later still cerebral palsy, because there was maybe an injury or an abnormality. And the key thing in which I now that I realize I didn't actually say when you asked me what cerebral palsy is, it's actually a disorder that affects movement and posture. So these children who may be less severe, they have their movement affected, their posture affected, but it's what we might say is mild. And then you do have that child who or that individual actually that has much more involvement with their limbs. We would actually classify them as being maybe more severe or what we call level fives, which sort of refers to that spectrum. And they're the people that are now have to be dependent on wheelchairs or they may not be able to have. Be able to need an augmentative and alternative communication device to be able to speak. So we call that they're nonverbal or they're not able to use their words. So real diverse. Which is actually part of the challenge when we look at research and care, because to, you know, each individual, you see one case of cerebral palsy, you see you meet one individual. They are so unique, and they're so sort of a saying, you meet one person and you are witnessing one case of cerebral palsy, just as that is just as unique as the person. So it's. It's a fascinating work and it's an amazing work to come alongside these individuals as we can bring change. [00:12:52] Speaker A: I do understand about being on the spectrum because I had a roommate when I was in college who had cerebral palsy. And she drove and she worked, and it was like, okay, so you have a little bit of a speech impairment. She had a little bit of that, and she had a little bit of, you know, she needed something on their car wheel to help her steer. But that was like, pretty much it. [00:13:17] Speaker B: You. [00:13:17] Speaker A: She had a little bit of a different gait, but, you know, let a normal life quote, whatever that might be. Can you tell me what are some of the causes of cerebral palsy? [00:13:31] Speaker B: So the most common cause is prematurity. So now a child can be premature and not get cerebral palsy, and a child cannot be premature and have cerebral palsy. So but that is the most common cause we believe right now. Numbers are changing rapidly because there's tremendous amount of research behind this going on right now. But right now we believe that there's 40% of the cases, the children are premature. The thing that we often believe in our society, that it's related to that is related to Noxia at birth. And that actually is not the case. So that's only 10% of the cases. So that's a misunderstanding in the public. But one of the things that is incredibly exciting because it opens the door for treatment, very specialized treatment, is that we now understand that genetics is involved with cerebral palsy. And it can be possibly up to 30% of the cases can be related to a type of genetics. My co chair, Dr. Michael Kruer, is very much at the forefront of this. And so I am just hanging out with him to learn more because it's really amazing work and it's going to actually change care for these people with cerebral pal, or people, individuals with cerebral palsy. [00:14:58] Speaker A: I'm wondering, Armando, if you could share a specific example of how UCP has transformed a family's life, you know, where its programs and services are concerned. [00:15:11] Speaker C: Sure. So prior to me coming on board at the national level, I had the blessing of working for United Cerebral Palsy of Central Arizona, where I had some amazing team members, staff therapists, service providers that would provide direct services to children and adults. And some of the things, Sam, that I did see is, and I heard this often that doctors, not all, but some doctors would, once there was a diagnosis that they would let the family know that the child, the probability of walking, you know, was very, very low and that it may not happen running, speaking like Valerie mentioned the disorder cerebral palsies movement. But through amazing therapies that were happening there at the local level at UCS Central Arizona, I got to see the other. I got to see those miracles happen where children began to take the first steps and then that turned into walking. Some of them, some began to to run. Others their speech was difficult to understand in the beginning, but then yet they began to speak a lot better. In fact, there was one gentleman who I asked to come up to the podium. I remember we were having a gala walk in and he shared a story that he would never speak. And he gave a beautiful speech. Right. I have assistive technology that also helps and assists people if they are not able to speak or walk. And those are amazing things that are happening today that they become more independent with not only the therapies, but with the technology that is being offered today. [00:17:09] Speaker A: So, you know, when you first Took on the role of President and CEO. UCP was facing financial challenges. So what were your priorities and how did you turn that around? [00:17:21] Speaker C: Yeah, so one was to basically stop the bleeding right on the business level, because I kind of put my business hat on is to find out where was it that we were a lot of. Where a lot of money was being spent. So I started looking at that. I had to make some tough decisions where I had people that were working for me that were definitely capable and worth the salary that they were making, but we couldn't, we couldn't afford them. So I had to make decisions where I had to let people go. But I had organizations, non profits. Sorry, one second. I had some non profits come in to do finance for a fraction of the cost. So I was using vendors. At the end of the day, Sam, we had saved literally in a year, about $500,000. [00:18:20] Speaker A: Wow, that's a lot. [00:18:22] Speaker C: About half a million dollars. So that was the beginning. In addition to that, we were in a very nice location in Washington D.C. on K Street. The lease was enormous. So I made a change and moved from a $62,000 a month lease over to 1500 lease. So those were kind of like the business aspects of it. [00:18:46] Speaker A: Right. [00:18:47] Speaker C: But Sam, the really another important element besides the financial piece and being sustainable was also increasing the trust level of our affiliates. How we were using the money and today is that we are financially viable. And now we're investing back into the affiliate network which has turned around the image of the national office to a very positive one, a trusted image. And we're investing back to the affiliate network in the work that they're doing on the ground for people with disabilities. [00:19:28] Speaker A: Valerie, I'm wondering what are some of the common misperceptions that people have about cerebral palsy? If you can let me know those. [00:19:38] Speaker B: Oh, sure. You know what? I think the most common one is the idea that someone with they have a physical disability also has an intellectual disability. So. Yeah, and we see that all across. [00:19:51] Speaker A: The board, I feel like on disabilities, right? [00:19:54] Speaker B: Yeah. I mean, I think that the idea that if somebody is nonverbal, that they don't understand what's being said. Yeah. So, you know, and actually, so it's, it's like, you know, if the public knew there's really only 50% of individuals with cerebral palsy that actually have an intellectual disability. And then of course those individuals that do have an intellectual disability, it's quite a wide array. So I think that the thing that like that I hate about that the most is that that causes people not. That perception that they're not understood causes them not to be able to address the individual room. They're right there in the room. Right? They're right there and should be part of the conversation. And that's something that. Yeah, you're right. It applies to all disabilities and it's something that needs to definitely be changed. It would be a good campaign. [00:20:52] Speaker A: Yes, definitely. Right around, right along with if you're blind, you can't hear. Right? [00:21:00] Speaker B: Exactly. Yes, exactly. There's a lot that needs to be changed. [00:21:06] Speaker A: Right. I'm wondering if you and Armando could share like you guys are. I mean, this is a pretty particular branch to be in. Do you guys have experience with PC or have family members with it? What brought you to the. To do work like this? [00:21:26] Speaker C: Go ahead. Valerie, you first. [00:21:27] Speaker B: Okay. So I am the clinical opera, the VP of Clinical Operations. But for most of my career I was an occupational therapist that worked in the field. [00:21:38] Speaker A: Okay. [00:21:38] Speaker B: Yes. So I've worked in all my programs for the most part. And you know, the journey to working with families, so coming alongside of them, you know, from that first diagnosis all the way to the implications of what that means for their child and their family. So I work pediatrics and I oversee a pediatric programs. It's just amazing. It's actually quite soul filling in it. So I'm super happy that my office did change. We were talking about offices that my offices do allow me to see either the children playing on the playground or coming into our programs, which is my new office. But that's. That's. That's my journey. It's a bit of a family legacy. My mother worked with disabilities, so I used to always get pulled in. They tried to get me to be the Easter Seals bunny when I was a teenager and I wouldn't right now, no, I wasn't having it at 19, so. So it is a bit of a family legacy, but it's also a personal journey and it's a one I. It's been an amazing journey. I don't even really actually have words for it, but to see both the struggles, but also the transformation in lives because of services that meet their needs is just incredible. I definitely, and I'm proud to be part of UCP because I feel that we are that thing. [00:23:11] Speaker A: Armando. [00:23:12] Speaker C: Yeah. So for me it's a little bit different. A little over 14 years ago, when I was as to apply for United Cerebral Palsy of Central Arizona, there were some issues going on there related to fundraising. And one of their. One of their Biggest partners was Circle K. And they were raising at the time about a little under $3 million, which is a lot of money. But they wanted to make sure that they brought somebody in that can enhance that relationship. On the other hand, I think that's why they really hired me. But on the other hand, my dad had a. Had a disability. He had a car accident right before I was born, which he couldn't work. The doctors had said that he would never work in his life again, and he did not work again in his life. So that changed a lot of our, you know, our upbringing from middle class that was into a really, really poverty was where I grew up. [00:24:16] Speaker A: Right. [00:24:17] Speaker C: But I do have I a two cousins. Their, their kids have cerebral palsy. One was my cousin who was in labor, actually died while having her child. And now he's about 40, about 40 years old. So he's, he's had a lot of complications. But going back. So I was a little bit of an anomaly because I didn't have that clinical background, but I had the business background. So that particular relationship with Circle K turned into from a $2.8 million to $6.3 million before I had left. So that didn't help you fund a lot of the programs. And there was other things that I wanted to bring in to the, to the organization, which brought in a lot of kind of leadership role. A leadership role. I wanted to be the CEO, the listening for understanding, have that kind of culture, kind of break up the silos that it had. And in seven years, thanks to a great team that I had that included Valerie, I think we accomplished a lot of that, a lot of that work. So again, more on the business side of it to focus on some particular issues like what happened at National. And that's how I started in this world of disabilities. [00:25:50] Speaker A: So UPC has a broad networking and you've kind of led with that as far as the affiliates and providers. It seems like you're really trying to build trust and widen that. Can you talk a little more about this and how it looks and the impact? [00:26:08] Speaker C: Sure. So, you know, you can imagine if you're an affiliate and you're paying dues that are not cheap. Right. For the intellectual property, which is United Cerebral Palsy, Life without limits for people with disabilities, UCP and we have other trademarks as well as an affiliate, what you want is that you're looking for a value for to become a member. But if you're seeing and you have the optics that the national office has its financial issues and what does that do for the value or what does it do for the community and people that are supporting you? Either via government grants, individual donors, corporations, it all is an effect of optics. So what I had to do immediately was then make sure that I had increased and enhanced the communications with the affiliate network. So I started, if you wanted some examples, I did a. I instituted a town hall where the affiliates had access to me. It started with, started really on, not so much virtual, but on a conference call before ZOOM came about. So we have those every quarter. So affiliates have this one on one with me. In addition to that, every initiative that we put together, even our strategic plan, that didn't come from the national office solely, but I brought in affiliates to actually help us to map out our three year strategic plan. I've also instituted the leadership summit that brought the affiliates throughout the country and in Canada to come and have these major discussions about what are the priorities of the affiliates and what do they want to see national help with. So we came up with four priorities. One was brand awareness, the other one was enhancing our advocacy efforts. The number three is enhancing our development fundraising efforts. And number four is to increase our footprint, our footprint within the United States. We are in, currently in 30 states. So we have other states like Texas that we are not present. So we're moving forward with that as well. So all in all, I think what it was just in simple, just simply is that we included the affiliate network and the executives into major initiatives that we were doing on a national level that brought the trust level to another level. [00:28:50] Speaker A: I am curious because I always think about this being on some other boards and committees. You know, you, you can have people like UCP that may actually know or have some heavily experience with disabilities. But sometimes some of the networks or you know, people that you're trying to get to pay into this, they don't have a lot of experience with disability or they may not have even anyone in their, in their board or whatever who has a disability. So what? There is an educational piece, I would think. Huh. And how do you kind of address that? [00:29:37] Speaker C: So that's important. At least I can speak to the board that we have. On the national level, 49% of the board members are executives of affiliates. So we have that expertise in that representation. 51% are professionals that have some type of expertise and many times they have somebody in their family that has a disability. Right. So we balance that out. I can't speak to the other boards because each of our affiliates have their own autonomy. [00:30:14] Speaker A: Right? [00:30:14] Speaker C: Yeah, we're not A corporation, we are not a franchise. So they have their own autonomy. But I would say that when I've gone out to visit the affiliates throughout the United States last year was about 26 visits. This year I'm hitting almost about the same numbers that the people that do serve on the boards kind of have that same balance. It's either apparently it's a professional that somehow somebody in their family has a disability. So there has to be that. There really has to be that passion about the disability community, about cerebral palsy or other conditions is why they serve on there. So it is typical that that expertise is part of that makeup of the board of directors or board of trustees. [00:31:03] Speaker A: I'm wondering what some of the most pressing issues facing families with disabilities are today and how is UCP addressing these challenges. And I would guess that poverty can be one of them. [00:31:22] Speaker C: Valerie, you want to start and then I can chime in? [00:31:25] Speaker B: Yeah. So, yes, I think that the financial burden of having a disability is enormous. I'm happy that there are, you know, our, both our federal government and our states have funds allocated for individuals with disabilities. But probably one of the most, one of the things that I've been seeing most recently in my state of Arizona was impacted by a cut in the early intervention program. I know one of our affiliates in Alabama was also affected by this. And the early intervention is for children under the age of three. And so when we're talking about really what could be preventative medicine, we know that certain types of treatment, if early, can actually change the severity of cerebral palsy due to a phenomena called developmental neuroplasticity. So when the brain is pruning and adding to itself in response to its environment. So when we pull back that funding for those children who someday will be our adults, that's a big mistake. I think I just lost my airpod. So I'm talking my hands too much. So then my airpod came out. So that's really concerning, to say the least, to see these type of cuts here in Arizona. The cut was significant. It's about slashed, splashed about one third of the budget. So we need change, we need advocacy for that. Cerebral palsy is very, already as a diagnosis, very unrepresented in terms of funding at the CDC level. When you talk about it being the most common physical disability, its funding is non existent. So yeah, right. So there is a lot of advocacy to be done. I, you know, I mentioned that I was a clinician of many years and I went and looked at the list. So all, all, all disabilities are Important. But I, I struggled, I struggled sometimes to know what a disability was that had received funding, and that's because people advocated for that disability. And that's. That's what we need to be doing as well for cerebral Palsy. [00:33:57] Speaker C: Sam, I wanted to. I'm sorry, Sam. [00:34:00] Speaker A: Oh, I was going to say, do you feel like it's not represented well because it hasn't been advocated for as well, or that people are on a pretty high, you know, living. That they can, they can address daily things and it's just not seen as starkly as, let's say, paraplegic or quadriplegic or something like that. Sure. [00:34:30] Speaker B: I think that there is an advocacy piece. We are behind the families with children and individuals with autism. They have knocked it out of the park. I am so amazed by those individuals. We are behind that. But here is the fun thing about it, and Armando has already spoken to it. There is a star that is rising or on the horizon, some of our advocacy, not only at United Spring Cerebral Palsy, but even I'm getting ready to go present at the American Academy of Cerebral Palsy and Developmental Medicine. And there is some real excitement around not only advocacy, but research and care and transforming that. It's a grassroots sort of approach to it, but it's an exciting place to be. But the work is enormous because to your point. Wow. Yeah, wow. There's some work to be done. [00:35:38] Speaker C: Sam, I wanted to add to your question or compliment. What Valerie was saying about poverty and families and poverty is that I remember going to a conference two years ago in Mexico City, International conference, and they spoke about the correlation of poverty and families with children with disabilities. And they found that there was a higher level of births with disabilities because the poverty level of women and families and married couples is that they didn't have the appropriate access to medical care or prenatal care or not educated of what, how to take care of themselves. [00:36:26] Speaker A: Right. [00:36:28] Speaker C: To Valerie's point, early on, like, one of the common causes is prematurity. And all of that, somehow some way is. Is correlated with people that are in that poverty level. What UCP has done on a national level, it's a small thing, but it's. For some, it's huge. Is that thanks to Dr. Alcy Balls, who passed away several years ago, she left us a bequest of about $4 million. That 4 million, when I came on board seven years ago, was turned into $8 million. So our job is to distribute that fund, those funds through our affiliates, and it will provide funds for families that can't afford or in the poverty level, assistive technology. So we distribute half a million dollars on an annual basis through our affiliates. Somebody could not apply to that fund if they were not receiving services through a UCP affiliate. So we've helped many, many families to provide assistive technology that they could not afford. And we are part of making those lives much better, bringing hope through this grant. And we, and we certainly are very grateful to Dr. Valos, who now passed away. But on a yearly basis, we're still distributing around half a million dollars for families throughout the United States that need and qualify for this fund. [00:38:10] Speaker A: Excellent, Valerie. I'm wondering, can CP worsen or change after the diagnosis? Can it change when one is growing up and getting either worsening or lessening? [00:38:30] Speaker B: So we think of cerebral palsy. I'm going to take a step back. We think of cerebral palsy as being non progressive, which just speaks to the fact that it's an event that happens prior to the age of one. So the actual cerebral palsy, like, you know, you know, if it was, for example, a stroke in utero, the stroke was the stroke. Right. But if, particularly when you have a life that's your activity, there's activity limitations that are involved there, or you know, just that idea which intrinsically creates a sedentary life. Right. It can have more, it can have ramification on an individual's health. So, you know, if a child's not running and if an adult or, you know, a teenager's not running and exercising, you know, you can see that. So that's kind of the easy thing to understand. The more complexity to it is that if you have spasticity, there's actually it, it feels like the cerebral palsy might be, or it appears that the cerebral palsy might be worsening because there are secondary implications to the cerebral palsy, like musculoskeletal implications, and particularly once you move into adulthood. Individuals with cerebral palsy live as long as the average population, but their medical complications are so much worse because of the impact of the cerebral palsy. So funny to say, but the answer is no. But yes, sort of. So, yes, it, I think it can appear that way just because of the complications that go along with it. [00:40:19] Speaker A: I'm wondering, because you meant it. You mentioned dystonia and I know somebody who has dystonia, but he was diagnosed at a much later time in his life. So is there some dystonia that is counted under cerebral palsy and some that isn't? Or might he have had something he didn't know Prior. [00:40:40] Speaker B: Yeah. So dystonia is something that we don't quite understand really, I'll be honest. So I don't even want to misspeak. Right, okay. [00:40:48] Speaker A: That's okay. [00:40:49] Speaker B: But, yeah, but I can answer on some level. So dystonia is a type of cerebral palsy, but there are other childhood dystonias that can emerge later. So is what you were describing that really depending on the individual circumstances. But you know, going back to that idea that cerebral palsy is something that occurs prior to birth unless they. That is sort of. Or I'm sorry, prior to 1 years of age, not birth, unless that's identified, then it is typically considered like to be a childhood dystonia or may be associated with an unidentified condition. That will come to light with the dystonia emerging. [00:41:33] Speaker A: I presume the role of early intervention plays of treatment will play the role that the earlier you seek treatment, if there is some, the more advantages you have later on. [00:41:49] Speaker B: So something we haven't really brought up, but I'm going to have to because this is what I love to champion. Just saying. I am actually also for nationals, I lead an early diagnosis or detection. It's really detection, but that leads to diagnosis of cerebral palsy. I lead a group. We have about 30 therapists across our affiliate group. We were just in Atlanta at Emory University just creating early detection champions. So this idea of early intervention is only truly, really, really, really possible because we can diagnose early. So the average age. So the average. Okay, so this is, this is my. This is my love or my passion. The average age is at 2 years of age in our nation that we diagnose children. We. The average age that we diagnose children with CP is two years. And that's because we wait and see if a child is going to meet their motor milestones. And so, but we know now with 95, approximately, it depends a little bit on the child's presentation. But 95% predictive validity. We have two that have. We have tools that have 95% predictive validity that we can diagnose the cerebral palsy as early as three months. Wow. Right. So when you talk about a brain shaping, you know, pruning, adding to itself, that open window goes up to the age of three. And if we're diagnosing at two. [00:43:17] Speaker A: Oh, my gosh. Yeah. That's so little time. [00:43:20] Speaker B: Right, Right. So there's a real urgency around this. We understand this urgency with adults when they have strokes. We all know that if you have to get in there and intervention has to happen right away, but we don't have the same urgency with our children. And again, going back to the idea, it's always convoluted when we talk about this, but not all children are related to a stroke or particularly in utero. So. But we know the urgency for adults, and we need to learn to apply that for children because that open window, once closed, change can happen, but nothing, nothing like those first three years. So this idea of cutting back funding for this population is just heartbreaking. [00:44:13] Speaker A: So how does UCP plan to expand, you know, its reach and impact in the disability community? And what role do you see new technologies playing in it? [00:44:27] Speaker C: So one, Sam, is that our fourth goal is to expand our services throughout the United States. So we are speaking with other organizations that are not part of the network that are providing great services and having a conversation with them about them joining ucp, especially in states like Texas, that we are not present. So it's part of our strategic plan that we begin to engage with these organizations that are changing lives. So that's one way that we're doing it. Another thing that we're doing, Sam, is that we've really broadened our awareness going through the multiple social media platforms. We're a lot more visible than we were three, four years ago. So we're really gaining, you know, this momentum out there of letting folks know about what we do. And you're a great example, you know, at your radio station kfia, that we are sharing. Both Valerie and I are sharing what we're doing. And some folks have also this notion that United Cerebral Palsy, obviously it's our name, that it may be misleading. While we do focus on Cerebral Palsy, we will continue to, is that we also provide services for other conditions, down syndrome, autism, developmental delays and other conditions that I mentioned early on. So we are making some major efforts to let the public know what we're doing, specifically during our 75th anniversary. And we also have a United for Gold campaign that we started back in July. So that's brought a lot of awareness in the disability community and the philanthropic community, in the corporate community as well. [00:46:24] Speaker A: So I'm wondering what challenges do you, I mean, do you see that there's challenges you must with people with CP facing in education and employment? [00:46:39] Speaker B: Yes, I would definitely. There's definitely challenges. Just going back to. I am, I apologize, but I'm going to hold my hand on it to keep it there. It is not cooperating. I've never had it do this. So going back to that first, that discussion we had about People being able to or people perceiving people as having an intellectual disability just because they have cerebral palsy right there. An employer's perception when somebody applies is going to be impacted if they're looking at, you know, a job that they're attempting to place on. So, yes, there are a lot of challenges that way. Just by the idea of having a physical disability is going to limit your job pool already. Right. So there are certain things that. That even adaptions are not going to be able to make that bridge. However, I feel that the one thing that is really, really, I think, exciting is that technology is the friend to people with disabilities. And so when you think about adapting an environment, when we can use technology to adapt an environment for someone to be successful in employment, there's so much. It's. If speech is possible, then speech to text is something that opens a door for us. We have here at United Cephalopoly Central Arizona, we have an augmentative and alternative communication program where we give children speaking devices. It's a high tech program. So that is an adaption. If started early, a person can be quite proficient with an AAC device. So all of those things can bridge a gap for employment. But we all know that there's challenges, and often those biggest challenges are the public's perceptions. So going back to the whole idea of advocacy and being able, the movie that's coming out from Disney is a great example of breaking down barriers and changing people's perceptions about what is what individuals with disabilities can do. [00:49:09] Speaker A: And what movie is that? [00:49:10] Speaker B: Oh, we were talking about it earlier. We weren't talking about it. It's Marmondo. You just got to preview it. [00:49:17] Speaker C: Yes, yes. So the movie. Let me just really take a quick look at this. Sorry, it is one second. [00:49:31] Speaker A: And you previewed it. So do you, like. So often I feel like, you know, people with disabilities sometimes get depicted or pushed into that role of superhero or super amazing, blah, blah, blah. And I'm thinking, well, you know, I may have some gifts, but I'm really pretty much just like you or anybody else. [00:49:52] Speaker B: That is true. I do know Almondo is looking for the actual name. I got it. You got it. Okay. [00:50:00] Speaker C: Yes. So it's a Disney movie movie. It's out of my mind. And I had the opportunity to preview it in San Rafael, California about a week ago. And it's about a young lady with cerebral palsy, nonverbal, and kind of captures a moment in her life Right. While she's in sixth grade and how she wants to participate and Then the barriers and the challenges and the misconceptions and the bullying and all of that. But she has something major to contribute to that class, and I don't want to give it away, but. [00:50:39] Speaker A: No, yeah, don't do that. [00:50:41] Speaker C: It's an amazing, an amazing movie. Disney plus did a fantastic job. Phoebe Taylor, who is the star with Cerebral Palsy, which was fantastic. [00:50:54] Speaker A: I think we're gonna need to have her on. [00:50:57] Speaker C: Yeah, I think she's in the United Kingdom. However, she did a fantastic job and it's a heartfelt movie, but it really brings to the audience the reality of people living with cerebral palsy and really dispels all these misconceptions. So well made movie. Bravo to Disney for putting this together. [00:51:27] Speaker A: Armando, we have a short period of time left, but what advice would you give to parents who have just had newly diagnosed children with cerebral palsy? [00:51:38] Speaker C: Right. I mean, it's a scary time. There's no doubt about it. Because there's a lot of questions that they may have. I would say that they can go to many of the organizations out there, but the experts we are United Cerebral Palsy. They can go to ucp.org there's a list of our affiliates throughout the nation. One of the experts that I know well is United Cerebral Palsy of Central Arizona, Valerie Piercini. You know, they can reach out to us and get those initial type of answers or questions answered and hopefully we can be of help in those initial months that they have when they do get the news. But we are a resource for people with disabilities, specifically cerebral palsy. That's ucp.org Excellent. [00:52:31] Speaker A: Can you give that again? And maybe there's. Is there an email address that if people have questions. [00:52:39] Speaker C: So if you go to our [email protected] it will also take you to our information and referral page. They can go in there and ask a question and then we would circle back with them and there's telephone numbers in there as well. They can also also go to the directory of our affiliates and if there's an affiliate that's in their city, they can connect with them directly. It's all on our website. [00:53:08] Speaker A: I'd like to thank you both for coming on. It's been great and I appreciate your time that you give to this program and I want to wish you good luck with ucp. I'm sure it'll be awesome. And thank you very much again. [00:53:20] Speaker C: Thank you, Sam. It was an honor. [00:53:22] Speaker B: Thank you, Sam. [00:53:24] Speaker A: This has been Disability and Progress. The views expressed on the show are not necessarily those of KFAI or its Board of Directors. My name is Sam. I'm the host of the show. Charlene Dahl is my research PR person. Erin is my podcaster. Miguel engineers this program currently. I want to thank Kelsey Kindle for suggesting and reaching out to ask for the interview. And if if you have a suggestion or topic, you may email [email protected] that's disabilityandprogressamjasmin.com We've been speaking with Armando Contreras. Armando is the President and CEO of UCP and Valerie Pieraccini, who is also with Research and with UC P. Again, this is Disability and Progress. Thanks for listening KPI.org.