Marlene Sallo/J.J. Rico: Mission of NDRN

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.

Hi, welcome everyone in the United States and around the world. I have to send a special shout out to Richard Roberts, my dear friend that I love so Mutch, who I first met in South Korea and then went on with him to Japan, and now he's in Brazil, and he is an awesome disability rights leader. So you all know, uh, when the— and when people go to an embassy and say, we're looking for an expert on the employment of people with disabilities, they call the State Department, and then I am frequently asked to go. So I've been to Japan, South Korea, Kazakhstan, Indonesia, Panama. Then I did virtual presentations for Nigeria, Tunisia, Libya, and Austria. And just recently, for my friends coming up on the radio, I just did a presentation virtually for Brazil and get ready for a radio show. It's coming your way. But I just want to say, you know, we have like 17 countries with listeners to this show. And to every one of you, I always say this to that one person in Mongolia. You're making a difference, one person. So keep it up. Keep listening. You know, I love all my listeners. I hope you all know that next year is the 20th anniversary of this show, number one, and it is because I have such great listeners. Thank you, and thank you for caring about quality of life for people living with disabilities. And I'm very excited to tell you, I just spoke in Berkeley, California at the 50th anniversary of the Center on Independent Living. Oh my goodness, I got to spend time with my close friend Judy Heumann and Tony Coelho But here was one of my favorite things while I was there. You see, uh, there was a documentary filmed, and I'm so honored that I was included. But really, the center of all of it was Zona Roberts, Ed Roberts' mother. Now I know what you're already thinking— how is that possible that his mother could be alive. The answer is she's 102. 102, and she's sharp as a tack, and she is a fireball. So I got to spend time with Zona Roberts and Ed's brother Mark. Wow, what an honor. You know, if she had not pushed her son Ed Roberts, who had polio, and at one time, you know, Well, he is the first person that sued the University of California allowing someone in a wheelchair to go to college. But just think if she had not encouraged him and told him, you know, you can be like— you are like anyone else. Fight the fight. Disability rights are civil rights. What would have happened? So I give her so much credit. But anyway, so excited to be there and so excited to be with our guest today. Special shout out Yoshiko Dart. Yoshiko, how about that story? I bet you love that story about Berkeley, and it was an amazing, amazing thing, Yoshiko. And we did— they did talk about Justin, uh, and I talked about you while we were there. And to my sponsor, Highmark, lead sponsor all these years. Highmark, thank you. You are such a great company. And you know what Highmark does? They hire people. See, that's where the rubber meets the road— employment. That's why when I spoke in D.C. at the State Department not long ago, I said— it's national— they had me there for National Disability Employment Awareness Month. I said, stop calling it that. Call it National Disability Employment Month. We've had enough awareness. How about hiring people? And that is what makes all the difference. And today, oh my goodness, we have the new executive director of National Disability Rights Network, Marlena Salo. Oh, Marlena, it's so great to have you. And JJ Rico, the president of the board. Of NDRN. Both of you, welcome to the show.

Thank you.

Thank you so much for having us.

Well, it's a great day because we get to talk to the new executive director who, by the way, just started a few weeks ago and is known nationally and is so highly thought of nationally Uh, so congratulations. It's so great to have you as the new director of NDRN. You have a very big job, and just think, you're the leader now for the country for NDRN. How about that for some pressure?

Yeah, you are it.

So let's start with your story. I always ask guests to tell their story because not only in the United States but around the world. I want people to know you and how you got where you are. So maybe you could share with everyone a little bit about you, like where you grew up and then went on to school and law school, and then what made you decide to become a disability rights advocate.

Oh, thank you very much for the opportunity to be with everyone today. Um, So, as indicated, my name is Marlene Sayo. I am a Cuban exile. I came here to the United States in August of 1966 with my mom and my maternal grandparents. We settled in Washington Heights, New York. And then, when middle school started, we relocated to Union City, New Jersey. For those of us from the New York area, Union City is right outside the Lincoln Tunnel. And I got great education, and I was able to attend NYU, as well as Manhattanville College.. And believe it or not, my major was psychobiology with an education concentration. I never thought, or never at that point in time in my life, I did not see myself becoming a disability rights advocate. But I did become a special education teacher. And my first job as a special ed teacher was with Miami-Dade County Public Schools in Miami, Florida. And while there, I worked closely with many students who had varied disabilities. And I saw that they were being funneled into the juvenile justice and even the child welfare system. And their needs were not being met. In addition, I was volunteering as a guardian ad litem in the juvenile court there in Miami. And I also saw that a lot of kids were coming through the system that had needs for services or educational modifications. And accommodations that were not being met, not only within the foster care system, but also the juvenile justice system. And that ultimately prompted me to decide to go back to school at the age of 27, to go to law school. And so I attended Florida State University, and I focused on advocating for what I call dually-involved youth, which are youth that are going through the child welfare and juvenile justice system. Who also had special education needs and required services or accommodations in the school. And that's what got me started in the disability rights advocacy world.

Wow. I want to ask you a question. I— we have a not-for-profit. It's called the Bender Leadership Academy. And what we do there is prefer— prepare students for the world of work and to deal with bullying. And you know what I always talk about, I did this on a volunteer basis for 20 years, then in 2018 we founded the not-for-profit separate, of course, from Bender Consulting Services. And I have found that so many children or high school students with disabilities are, the bar is lowered and they go through school and it seems as if they do not learn anything. And then if they have a learning disability, you know, it gets even worse. And then when they graduate and then something happens in their, in juvenile court. Is this what you see, Marlene? Is that what you see also?

Yes, I saw this all of the time. I remain in contact with fellow teachers that are still doing the very important work in the classroom. And this deficit of education continues for our kids who have an IEP or a 504. And if I may, I can elaborate. I was a science teacher when I taught high school, and I had a VE class, varying exceptionalities class. And so I had kids with multiple levels of, um, understanding. And my kids scored higher on the standardized biology test for the county in our school than the general biology class. And I was actually called into the office, and I was questioned as to how my kids students who were in a self-contained varying exceptionalities class could score higher than the quote-unquote general education biology students. Because what the standard or the expectations are unfortunately lowered on a continuous basis.

Oh, that is, that is outrageous and I know it's true. Because, and these classes, because I'm in a raised the bar. No pity, no pity. You know, they get assignments like preparing for a speech, whatever it is, and if they don't have it, I'll say, all right, why don't you have it? You would lose your job. What's your reason? And do you know, in all those years, no one has ever like talked back to me and got mad. And I believe it's because no one has raised the bar and made them feel as if, what, you expect me to compete with everyone else as if I'm normal? Do you know what I mean? That's what it seems like. And I see that school-to-prison pipeline. Why is that, Marlene? Why do you think that is? Because someone asked me, why are all these kids with disabilities, what are they doing that they all end up going to the juvenile system? And of course, I gave them all my reasons, but I want to hear what you have to say.

Well, it's— what we find is that it's not just students with disabilities, but it's also students of color with disabilities. And so, and 9 times out of 10, they're attending schools that have— that don't have as many resources as perhaps the other schools that have higher, you know, socioeconomic income within the community at large. You have teachers that are burnt out. You have teachers that don't have their paraprofessionals in the classroom to provide the additional support. There is no ability for teachers, less and less as time goes by, to actually focus on the individualized education that is supposed to be delivered to the students. When I was in the classroom, I would create 5 different, 5 different formats of the exam, one verbal all the way to one that was very comprehensive requiring, like, full paragraphs to be written with explanations to be provided for my students depending on the level that they were at from a comprehension perspective. They knew the material, but perhaps they couldn't express themselves the way that it was needed. But I made that effort, and 9 times out of 10, our teachers are now so burnt out and having to deal with so many other things that we are seeing more of an increase of kids being pushed out of the system. But the bottom line is, if we do not have understanding for our students, if we do not provide them with the supports that they need, if we do not address the needs of the whole child, what, what is going to happen is the teachers are going to say, "I do not have time for this. Just get them out of here." And if you have school resource officers, they tend to call the school resource officers first. And say, "I do not have time for this. Remove them from my classroom." And, and that starts that passage into the school-to-prison pipeline. That is what I have seen being in the classroom and having advocated against the school-to-prison pipeline.

Oh, that is so terrible. Well, we have you now to bring that all to light, Marlene. Um, and the person that is the president and top dog here, JJ Rico. Welcome. How about if you share your story and why you became an advocate? And he is the president of the board.

Thanks for having me, Joyce Bender. I just want to kind of share with the audience and with you, I mean, you obviously can see Marlene is the right choice for the job. The passion she brings and the energy and the experiences is all there. So she made my, my job easier. And as board president, you know, we're charged with going out there and finding the next executive director, and we feel that we've found someone who's going to lead the organization for many more years. My story is similar in a way that, you know, my background is from a completely different part of the country. I'm from Arizona, was raised in Phoenix by Chicano parents who kind of exposed me to activism early on, especially my mother and grandmother. Telling me stories about their struggle to get education on a basic level, being discriminated against based on their background or the language they spoke. And my mom kind of just ingrained it in me that, you know, the opportunities that I was going to have should not be taken for granted. And so, they really paved the way for me to go to school and to kind of be that next generation. And so, my thought was to be an activist, and I always thought about law school. I mean, Marlena can tell you, others who might know me say, "God, that guy doesn't stop talking." And so I think early on, probably the teachers wanted me to stop talking and stop distracting students. And so a lot of folks told me, "Hey, you should be a lawyer." And so I thought that was a good path to go. So attended the University of Arizona twice over, both as an undergrad and a law student, always with the focus of representing those that needed access to justice. And I didn't know exactly whether it was going to be disability law, but I do knew that there were communities that needed access to justice. And I got an interview and an opportunity to interview with the Protection and Advocacy Agency in Arizona, which is the Arizona Center for Disability Law, almost 21 years ago. Actually was, yeah, just over 21 years ago. And I was asked a question during my interview about what experience I had, similar to this question, kind of what brings you here. And I, and I really hadn't had law school experience, but what I had was family experience and exposure that really showed me that there was a needed advocate, a needed attorney to bring that law and to enforce the rights that are on the books, the ADA and the Rehab Act. And so I share the story and I share with you and your listeners that at that time I had a grandfather who had ataxia, who had lost his ability to walk and to speak clearly. So I was clearly an advocate sometimes on access to basic things like, hey, going out to meals, to negotiating a car deal, although he could do it on his own, he was oftentimes misinterpreted that because the voice wasn't there that the mind also was gone, but that was not the case. But he had prepared me to negotiate with car dealers early on. I had a father who was a veteran with a disability. My mother had acquired a disability and no longer was able to work right around the time of this interview.. So I shared that. And also have an uncle living with schizophrenia who I still am caregiver for today. And so all of that kind of was wrapped into my answer, and it really highlighted that this was something that I was meant to do. And I'm really not that person that thinks, oh, all the stars aligned. But that all aligned on that day and in that interview. And like I said, we're coming up on 21 years, and they haven't got rid of me since. And I'm happy because I continue to be an advocate. Grown from the staff attorney kind of focusing on employment law to growing into Title II and Title III ADA access, focusing a lot on captioning, movie theater access, things like that, and then ultimately into the CEO position. And then being one of 57 P&As, we get to have the opportunity to serve on the board of directors, and I was happy that I was voluntold by the New York director many years ago and kind of saw my way through.. And now I'm lucky enough to be the president at this time during this kind of really momentous occasion to have the next executive director in Marlena. So I'm really happy that I'm part of the greater P&A network and also proud to stand next to Marlena in this next step in the disability rights movement.

Well, I must say, I can tell you're a good man and a kind man.

Appreciate that.

So I, I'm not surprised that you are successful. I can tell you're a very giving person. So Marlena, let's talk about NDRN. For our listeners that are not familiar with the National Disability Rights Network, which goes by NDRN, uh, what, what is the mission? What is the mission? How large is the organization. And I think something that makes a difference is that you are the only legally based advocacy organization established by Congress to protect the rights of all individuals with disabilities. And what difference does that make?

Absolutely. So as you indicated, uh, NDRN stands for National Disability Rights Network, and we're definitely federally mandated. We're made up of the Protection and Advocacy system, as well as the Client Assistance Program. And both programs assist individuals with disabilities, and we are considered the membership association for these programs. And our mission is to promote the integrity and the capacity of the P&A and CAP national network. But at the same time, we also advocate for the enactment, as well as vigorous enforcement of any and all laws that protect the civil and the human rights of people with disabilities, right? Disability rights is civil rights is human rights. Our network is nationwide. We actually have a total of 57 P&A agencies, one in every state and all U.S. territories. And as a little background, in the beginning, NDRN aggressively— from the beginning, sorry, NDRN has aggressively sought federal support for advocacy on behalf of people with disabilities. And when we first started out, our focus was really narrow, and it was focused on the institutional care provided to people with intellectual disabilities. And we have now expanded, and our ongoing advocacy in those of the P&A programs includes advocacy services for all people with disabilities. No matter the type or nature. And so, as the only legally based advocacy organization with over 30 years of existence, the forefront is to ensure that we support each and every P&A to ensure that they are strong, effective, and ready to continue their critical work. And part of that comes from us providing technical assistance and training. To ensure that we're providing equal opportunity for all people with disabilities, that we're advocating legally as well as policy-wise for freedom of choice and self-determination, and that everyone's able to live independently in the community of their choice, which is so very important. So, we provide the legal training. We provide the policy and advocacy training. We support each and every one of the P&As that are out there doing the work on the ground you know, suing at the state level, suing in federal court to make sure that all people with disabilities, their rights are protected and that they have access to live as independently as they want and need.

Wow, that, that is a powerful organization. And just so everyone understands, could you explain what you mean by protection and advocacy?

So we all have rights, right? And so we are going to fight for you legally to protect your rights, your civil and human rights. But at the same time, we are also going to advocate through, you know, public policy changes, legislative changes, educating our elected officials to understand that these rights exist, to understand that these rights should be enforced, and to also understand that perhaps we need to expand some of the protections that exist out there, separate and apart from just enforcing them. And, you know, there is a lot of concern came to the surface during COVID It affected our community in a very impactful and sometimes painful way. And our P&As were at the forefront throughout COVID to ensure that people had access to healthcare, that if they had a personal assistant with them and they needed to be at the hospital, that the personal assistants were allowed to enter the room with them, and that they were not alone, and that they had support there as needed. You know, access to medical care is front and center, especially due to COVID, and we are protecting the right to have access to that medical care, and we're advocating to ensure that that medical care is being provided.

You know, Marlena and JJ, I have an employee who is deaf, and she, like, only 2 hours ago told me the story that she went— before she went to the doctor, she called to let them know she would need a sign language interpreter. So when she got there, they said, "What? Oh, we don't have one." And her mother, who is not deaf, and who does not understand sign language because Pam grew up oral, had to interpret, try to interpret for her. And in comes the doctor furious, and afterwards, he called a meeting, with Pam and her mother, with the staff, and severely chastised them. And that's all well and good, but Pam still had to go there without an interpreter. So, you know, it's hard enough for any of us to go to a doctor. It's like you're so focused because you want to hear what he's saying and what— or she is saying and what she means when she's going over. I mean, I live with epilepsy, so of course I would want to understand what the epileptologist is saying to me. Now, try to do that when you're deaf. I mean, that is just horrible. I mean, what do you do in that situation?

Call the P&As? Yeah, no, I'd be happy to share kind of what Arizona does, but I'm sure it's done throughout the P&As. It's not an uncommon story. So, I mean, unfortunately, obviously, I hear I've heard the stories over and over. I was hired to assist individuals who are deaf and the failure to provide effective communication both in employment and in this setting, Title III. We have a specific grant to deal with that. That's how bad it is either out here and probably around the country. But P&As are there. And so to Marlene's point, we're a phone call away from advocacy tips so that clearly the people know that no, mom's not supposed to interpret in that situation, that effective communication has to be provided. I mean, the one thing I heard about your story, which we don't often hear about, is the doctor knowing that it was the wrong thing and then chastising his employees for making that decision not to provide effective communication and the American Sign Language interpreter. So that's a little different story, which that is good that the doctor at least knew that was wrong, but you're 100% right that, you know, again, effective communication in a medical medical setting is crucial. I mean, knowing what's happening and what's about to happen, whether that be a procedure, any of that information needs to be effectively communicated. And so again, kind of a quick lesson for the listeners out there, and I know Marlene probably knows this and anybody else who knows disability rights knows this, but the ADA, Title III of the ADA, requires that auxiliary aids and services be provided, and an American Sign Language interpreter is an auxiliary aid., and so someone with a disability who might be deaf and need that should put that request in, and that medical provider should provide that. If they're unable to provide that, they need to provide an explanation, and also that accommodation's at no cost to the person who's needing the interpreter, and family members should never be used. Even if, let's say, mom was completely fluent in ASL, family members are not to be used, and that's clear in Department of Justice guidance out there. So just a little lesson out there, but we see that a lot, and And it's unfortunate, but most definitely P&As handle that on a day-to-day basis. All of our services are free. So yeah, if your listeners are curious about, they can go to NDRN's website and find their local P&A in their state, because they might like, oh, I didn't know there was, there's one in every state and territory, as Marlene has said, and it's easy to find and hopeful folks use that resource.

Well, thank you so much. And everyone listening, remember, if you're listening, you think, oh no, I wish My Friend or Family Had Heard This on demand. Go to Spotify, voiceamerica.com, Apple, benderconsult.com, and you can hear any of the shows and share them, the podcast. Well, speaking of state protection and advocacy groups, For the past 4 years, we have had the most phenomenal anchor on the half hour, and we are the only newscast, by the way, that provides weekly news on what is happening in the country that impacts the disability community. And we have a superstar, and her name is Perri Jude Ratasik. Welcome to the show.

Hey Joyce, thank you. I'm excited about Marlena and JJ's appearance on your show. Thanks for having them. They do a great job for our network.

And so do you, Perry. Thank you. So honored. I'm so honored to be on that board, and I'm sure you both know that she is a nationally known disability rights leader. Who is a superstar. So if you didn't know, now you know. But I bet you already knew, right, JJ?

Oh, I've known Perry Jude way back when. I maybe— when she was just a smaller superstar. Now she's a really big superstar. So no, Perry Jude was my boss before I was the CEO. Perry Jude was the executive director of Arizona. So Pennsylvania is lucky to have her, but I'd like to say she, she was at Arizona before the Disability Rights Pennsylvania.

So, well, see, then she knew to come to a good state. That's right. Okay, Perry, let's hear the news for today.

Well, Joyce, we want to talk about election protection. That November election, a general election, is only 2 weeks away. And this election cycle, we call it the midterm elections, and We call it midterm elections because this election is held near the midpoint of a president's 4-year term of office. That's why they're called midterms. Midterm elections are really critical and important because we elect a third of the U.S. Senate, all the members of the U.S. House of Representatives, and statewide offices as well. But you know, Joyce, we still know there are barriers to voting for people with disabilities, whether it's of voter ID, ID matching, uh, polls that aren't accessible. So to help, a national nonpartisan voter protection coalition led by the Lawyers Committee for Civil Rights Under Law, in conjunction with partner agencies across the country including Disability Rights Pennsylvania, will provide assistance to voters now through Election Day. This includes absolutely comprehensive information and assistance at every stage of voting. So legal volunteers will staff the nonpartisan election protection hotlines live from 7:00 a.m. to 8:00 p.m. Eastern Time to answer any questions you have and assist voters. So here's what's important. Advocacy matters. Call or text 866-R-VOTE to get the voting help you need today and on Election Day. These are trained nonpartisan volunteers taking calls, ready to help you vote. They can help you make a plan to vote, make sure you know your rights, and help you resist and overcome any attempts to suppress your vote. Now here's what's great about Election Protection: the hotlines are in English, Spanish, Asian languages, and Arabic. You can also text to 866-R-VOTE, or you can go to 866-R-VOTE.org and you can send information via the web. You can find the phone numbers for all of these hotlines if you go to disabilityrightsPA.org, click on today's Advocacy Matters segment, or go to 866rvote.org. You can find all of the information there. Joyce, it's so important that we get people out to vote.

Okay, I have a question right now. I was talking before you joined about my employee Pam who went to the doctor and they didn't have a sign language interpreter. Now what happens to her if she goes to vote and no one understands the question she's asking You know, when you first go in and you show your card and they look all of that up, then what happens?

Yeah, that's a problem. And so to be better prepared, it would be important for her to call the county elections office where she lives, whether it's in Allegheny, Beaver, Westmoreland, wherever she is out in, uh, Western Pennsylvania. Call and, and prepare them and ask them for an accommodation that day to answer questions when she goes in and votes. If she has problems, she can call us at Disability Rights PA or 866-R-VOTE and, uh, or text 866-R-VOTE, and, uh, and we're happy to help.

That's what I was wanting to know. If someone goes to vote and there's any type of barrier, they can call you? They can call that number? Absolutely. Someone will help them? Okay, that's good. That's, that's, that's good to know. Um, and you know, Perry, it's so important for everyone to get to vote. So I'm going to my next question. What happens to people in skilled nursing? Like, do people go in and help them? What happens?

Yes, staff can assist. In fact, there's a law that requires skilled nursing facilities to make sure they're assisting their residents to vote. And if there aren't enough staff, they can contact us and we'd be happy to try to get volunteers out there to make sure that someone can assist them to vote or take their ballot to a drop box or take it to the mailbox and mail for the resident.

Well, what I love is if there is a place that for any reason is preventing that or not doing that, that at NDRN you have the ability to just go in without asking for permission. So, that's something that I really like. And before Perry goes, Marlena or JJ, do you want to add any comments to making sure the vote is not suppressed?

Oh, there's so much to say there. You know, Perry Jude gave a wonderful roadmap of what needs to be done on the day of the midterms, but we also need to start thinking about the presidential election. Yes, I know it's 2 years away, but if any changes do take place up in the Capitol and it trickles down to the states in some way or another, we may see vote-by-mail being, you know, pressure being put on not allowing vote-by-mail to take place or absentee voting to take place, which is so important within our community. And so, although that's not technically voter suppression, if our community is unable to vote from the safety of their own home, you know, independently and privately, then that in and of itself may ultimately suppress some votes within our community at large. And so, we need to really continue to advocate for and support the ability to continue with vote-by-mail and absentee voting across the U.S.

Thank you, and thank you, Perry Jude.

And that's the website for everyone, it is disabilityrightspa.org. Click on today's advocacy matters segment, it's on our home page, or go to 866-OUR-VOTE.org.

Thanks, Perry. Thank you so much. Okay, we have another caller on the line. Uh, Chris, are you on the line?

Yep, I'm here.

Hi, Chris.

Hi, how are you?

Good.

Hey, hi, Valena and JJ. I'm so— I just want to say congratulations on, um, starting. I think you've been there, what, about a week, Valena? A week, yes.

That's great. But you know, I'm a big fan of the whole P&A system and NDRN in particular.

Um, I wish more people in this country did know about the system and how it impacts the lives of people with disabilities and their families throughout the country. And I know you can use all those good stories that the P&As collect to advocate for more funding because that's what's really needed is more funding to do more work because, as you know, you have to turn away a lot of people. Because you just don't have the resources to help everybody.

Absolutely.

Hey, JJ, what do you have to say about that?

Yeah, no, hi, Chris. It's great hearing your voice. I would echo what Chris says. I mean, the power of the network is vast, as we've heard today, and we're able to do a lot of great advocacy. But with additional funding, we obviously could do more. There's plenty of work to be done, you know, and the disability movement can, can go far. But most definitely, we are, we're out there, and a lot of civil rights lawyers trying to make sure we're maintaining and expanding those laws that were created to literally open doors and give access to employment, etc. So we'll keep doing that great work, but if Congress gives us more money, we most definitely can put it, put it to good use and making sure that people with disabilities are included in all walks of life and and not excluded. You know, we talked about the pandemic earlier. We've learned a lot during the last couple years, and it really just highlights that there's a long way still to go, but the P&As are at the front. The last thing I'll say about the P&As, and this is what you said, Joyce Bender, lastly, is access. You know, our access authority is unique and it's unmatched. You know, and so when— I'll just describe it real quick. So if you're experiencing abuse and neglect or in a facility, an institution, in an educational institution, you can call your P&A in your state and territory and we can literally go on-site unannounced. And think about the power that comes with an unannounced visit is you get to see the environment in the state that it really is in, not a cleaned-up version, which will really give us as advocates a sense of what needs to be fixed and how we can make sure that that's a better learning or living environment. And so that's only unique to to the P&A system. There's not a legal aid society that has access authority to show up unannounced. And so I really wanna highlight that for any listener who's thinking, hey, what else, what differentiates you from a nonprofit law firm? And that is really one authority that we have that no one else has out there.

Go ahead. I just wanted to add that, you know, at least when I was— I followed Chris when she retired from the Massachusetts P&A and I became the ED in Mass. And what I found that was very striking is we would have other legal services wanting to partner with us on certain issues because we had that access authority. So, it is something very unique to the P&A system and that everyone wishes they had.

Right.

Well, I just want to say keep up the great work.

Congratulations, and I look forward to the great things that you two are going to do together as president of the board and as the new CEO at NDRN.

Thank you, Chris.

Thanks, Chris. Yes, and it's an honor for us to be partnered with NDRN at Bender Consulting, and Chris, of course, is a Executive Consultant, and what an honor that is to Bender. Here she is, Bush appointee nominated by Senator Edward Kennedy at EEOC and EEOC Commissioner, and then through Obama at OPM as the Deputy Director, and just a great person that I've known for a long time. It's great to have her. And I just want to get back to what you were saying there for a moment, uh, JJ. I love that. I love how you can just go. I love that because, you know, then as you said, there's no skilled nursing, there's no trying to make everything look right before you get there, or wherever it is, a prison, a school, wherever. And I think that is so powerful. But I know our listeners would like to know more about NDRN and the history. And it's a shock, but Geraldo Rivera was involved in all of this, and I'm sure many of our listeners are going to say, what? How'd that happen? So why don't you share that history, Marlene?

Do you want me to share, or do you want to share?

Yes, yes, I'll go ahead.

So, uh, yeah, it's true, um, Geraldo Rivera, prior to his Fox News days, was an investigative reporter and did some really good work. And we as the protection advocacy and as an entire country really benefited from an investigative report in 1972. So counting my years, it's about 50-year anniversary of his investigative report at Willowbrook State School for Children with Intellectual Disabilities. And so what Geraldo did was take his cameras in. He was allowed in by a doctor, well not necessarily allowed in, I guess let in, in a back door. And if you ever have an opportunity, you can still find the report on YouTube. You can Google Willowbrook investigative report and you can see Geraldo Rivera looking much younger. He took his cameras into the institution unannounced, as we were talking about, and really saw horrific living conditions for these individuals with intellectual disabilities. Disabilities. I mean, the scenes from the report and from his cameras just were awful. I mean, no one should live in an institution, period, let alone live in an institution in this condition and squalor. And people were malnourished. People looked, you know, were not clothed. And the impact of that I think not only captured the audience's attention, but it had got national recognition. There's interviews with Robert F. Kennedy following that, obviously calling for reform improvements. And I think that, that report and that work got all the way up to Congress and ultimately led to the passage of Protection and Advocacy laws. So most of our funding, if you look at our websites, you'll see all of our funding streams, and they All-Star Protection and Advocacy, and the first one, Protection and Advocacy for Individuals with Developmental Disabilities, which allowed us to have this access authority that we spoke about, allowed us to advocate for individuals with varying disabilities. As the years went by, those P&A laws were expanded to more than individuals with developmental disabilities. So we do owe a lot to Geraldo Rivera and his investigative report. There's even a video out there where he was interviewed talking about the anniversary of Willowbrook and its impact on the P&A system. But that's a little history lesson taking us back to all the way back to 1972. And the one thing that I'd like to announce is Willowbrook did close its doors at the end of 1987. So, you know, again, those are things that we like to celebrate because we do want folks living in the community in the place of their choosing so they can live their fullest life and to their potential. So that's my version of the history that I know and that I've been taught and that I've watched. Marlene or Joyce, feel free to add.

No, I think you've covered it. Go ahead, Joyce, I'm sorry.

No, no, I was just going to say I hope when you hear how terrible it was that, you know, if you're in skilled nursing or anywhere, sadly, one of the few— some of the institutions still going— if you, if you know of anything, you've got to call your protection and advocacy because they can really do something. And, you know, if you let these things go, oh my God, who knows what's going to happen. So please, uh, ndrn.org. I think if you go there You probably have a list of all the— by each state. Is that how it is?

Yes, you can. Yes, that is how it is. You can go to the bottom of the screen and you'll see, uh, you can click to get the list of states of the P&As in every state.

Well, I have a question. As you both know, I started Bender Consulting Services in 1995. A for-profit company to focus on the employment of people with disabilities. And if you had told me in 1995 that today in 2022, 70% of people with disabilities would still not be counted in the workforce with double the unemployment rate, I would not have believed it was possible. I mean, how has that needle not moved? You know, in the ADA. So, this is my crusade, but as I told Judy Heumann, and she asked me, "Why do you think this is?" I said, "Well, it's soon getting beyond stigma and pity. It's getting to what I call discounting disability." In other words, not even seeing it. Not even— a total discount, not even noticing. But I'd like to know your opinion with your great background. What do you think?

Oh, if I may, JJ, I'm going to jump in here because I have to put my teacher hat on. I really have to put my teacher hat on, and I think that we are doing a disservice for all of our students that come through the public, you know, the school system, and we're not preparing them for the transition piece. You know, I don't think we— We are, we are lowering the expectations of our students who have an IEP or a Section 504 plan, and then we are not abiding by IDEA by making sure that we have a robust transition plan for them and preparing them to graduate from high school and ultimately enter the workforce. I do not think we are doing a good job across the United States. And that is adding to the problem. And, but also, we, what I see in general from an HR perspective talking to small, middle, and large companies is like this misunderstanding of what it means for someone to have a disability and whether they can do the job, quote unquote. And, you know, having a disability is not a disqualifier. It is not a disqualifier. And we are seeing, I mean, I think we are getting a peep into The issues right now with the upcoming gubernatorial race in Pennsylvania, right? And the comments that are being made as it applies to John Fetterman. And so, it's like we need to stop and realize that sooner or later we're all going to enter into a world where we have a disability and we are going to need an accommodation or, you know, improved a accessibility. And that is not a disqualifier to be able to do the job. And that is one of my goals is to really be the voice out there to let folks know that having a disability does not disqualify you. It is not expensive to hire someone with a disability, contrary to the belief of some companies. And just because you need to give someone an accommodation does not mean that they can't do the job.

JJ, did you want to add anything to that?

No, I would echo everything Marlene said. I think it does, you know, education is the foundation which, you know, we build upon. And again, if our education system is failing our children with disabilities, then that pathway to employment is a challenge, you know, and often the pathway is to the prison as we talked about with with the school-to-prison pipeline. So that's the first thing that has to happen. And then second of all, I think Marlene has said it perfect. I mean, employers have to stop visualizing people with disabilities as not able to work and see them as contributing members to their employment, their business. The retention rates of an employee with a disability are higher. They're an untapped market, you know, an untapped group of individuals who is ready to work We just have to make sure that there's inclusive practices from the outset. So I think Marlene has said it perfect. And, you know, again, I think it should be all of our crusades. I really appreciate how you want to relabel the month. You know, it's not just an awareness month. It should really be an employment, you know, month where we're expanding, you know, those individuals and giving them opportunities to be employed, gainfully employed. And I want to celebrate the future. Future of the elimination also of subminimum wage because that is an archaic way of thinking to pay someone less than a livable wage, and I'm happy to see that that's on its way out. And so, again, we have work to do, but we're going in the right direction. But again, the P&As and the disability movement has to push that needle forward.

I agree. Well, we're to the end of the show. We only have a couple minutes, but before we end, I always ask this question. And that is, who was your role model, Marlene?

My abuelita. She passed away at the age of 92, third-grade education, came to the United States, had disabilities, physical disabilities, and she never allowed that to stop her. And she raised me, and she was a role model, and I've inherited some of her physical disabilities, and I continue to push forward because She did so without a complaint, and she will always be my role model.

Wow, that is awesome. What a great role model. How about you, JJ?

You know, I don't want to copy, but I have to because my grandmother didn't quite get to 92, passed away at 91, but story probably very similar. She had to go through through 3 kindergartens, not because she wasn't capable or smart enough, but just because of the color of her skin and the language she spoke. And from day one that I knew, she was working a full-time job, caring for our family, caring for folks with disabilities before she even knew they were people with disabilities, and paved the way for me. I mean, again, I wouldn't have the house that I live in if it wasn't for her. I wouldn't have the degrees that I have if it wasn't for her. And so every day I don't take a moment for granted because I I know that my path that I traveled was so much smoother because of the hard work and tears and blood that she shed for not only me, but for our entire family. And so, each day that I do what I do and love to do is in tribute to her. And so, I miss her, you know, to no end. I would die just to hear her voice again tell me that she loves me. But the motivation is there to make the world a better place. She was a much better person than even I am, and that's always kind of my goal because people say, you know, who do you want to emulate? And I fall awfully short of her every day, but if I'm trying, I know I'm going to end up a pretty good person if I try to be and live the life that she lived. So thank you for that question because I think it's really impactful for people to reflect on that.

Oh, that is awesome. Well, listen, we're at the end of the show. Thank you both for being with us today. I know I'm going to have to have you back on next year. Uh, everyone share this show. We have a quote at the end of every show, and today it is: "If you are neutral in situations of injustice, you have chosen the side of the oppressor," said Desmond Tutu. This is Joyce Bender. America's Voice, where disability matters at voiceamerica.com. See you next week and talk with Ted Kennedy Jr. In the words of Mary Brooker, choose joy.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific 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.

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