The Arc of the United States - President Frederick Misilo, Jr.

President of the Arc of the United States, Fred Misilo, Jr., speaks about the mission of The Arc and its roots as a civil rights organization fighting for the rights and inclusion of individuals with intellectual and developmental disabilities. We discuss several initiatives such as: Criminal Justice, Health, Employment, and Travel. Learn how The Arc made national news just days before the recording by joining other advocacy groups in obtaining a resolution from the U.S. Department of Health and Human Services Office for Civil Rights (OCR) around COVID-19 treatment policies for individuals with disabilities. It was a resolution that resonated across the country as other states have similar complaints filed against them. Link to The Arc website: https://thearc.org/

Transcript

Host - Naveh Eldar  0:16  
Welcome to the landscape, a podcast to shed light on the people, programs and businesses that are changing the landscape for individuals with any type of disability. I'm your host Naveh Eldar. Today I speak with Fred Misilo, the president for the arc of the United States, whose mission is to promote and protect human rights for people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community. Today, we will speak about several initiatives from the arc, including their collaborative work to stop discriminatory policies and treating COVID-19 patients who have a disability all the way to an exciting program for travelers called wings for autism wings for all As I continue to give my appreciation to supporters of the show, I like to stay local this time. And thank my listeners in Nashville, Tennessee, as well as the Tennessee Council on Developmental Disabilities, who has humbled me with their support kind words and feedback. That will start this episode with Fred Misilo telling us how he became involved with the arc.

Fred Misilo, Jr.  1:24  
My work with Dr. began quite a long time ago, when I was in college, and the summer of 1975. My very first job was as a summer camp counselor for the Worcester Ark. And that was as a camp in a Boy Scout camp. That was the first time that the Boy Scouts and Mohican council get together with a local ark to integrate a summer camp program. So I, I lived in a tent. We cooked on an open fire for that summer. And that was my very first experience with folks with disabilities. And it was you no direct support. And it was a wonderful experience, you know, 1919 years old, you know, being outdoors, sharing life experiences with folks. Some of them were my age, some older, some lived in a facility, some lived at home. And after that, I began to really get interested in what was happening in intellectual disability movement. At that time, there was lots of activity regarding institutional reform, and also developing community based programming and so spent a lot of time in and around the yard. Now the ark itself is a human rights civil rights organization. It's 65 years old, or so. There's there's some debate as to where it started. Some folks think it was out in King County, Washington, other people think it's somewhere else in New Jersey or whatever. So it's been around since for over 65 years, and it's really supporting the interests of Indians. with intellectual and developmental disabilities and their families first started out with family saying, you know, what government is providing isn't, isn't what we want for our loved ones. And so there were developing community based services back then sheltered workshops, various supports that didn't exist, and also fought to begin to close improve conditions in institutional settings and then fought to be institutionalized those, those settings. And so over a period of time, what's happened is that the market now has grown to over 600 chapters across the country. I think the latest stat from Peter burns our CEO is that we serve about a million people a day across the country. So it has a very wide wide berth and, and so I'm proud to have been involved with it for frankly, all of my adult life in one form or another. And it has brought me a sense of real impact and feeling that you know, I've worked with so many wonderful Families and people, individuals with intellectual developmental disabilities that, well, individuals are changing folks lives for the better. on an individual level. We're also have helped shaped hearts and minds and moved in social change and speaking with Rick's swearing, who was formerly an executive director in New York, and he's now retired and he and I exchanged some emails recently about when he started in the 60s as a special educator. He thought it very much similar to my experience in the sense that he came to it with no family member with a disability. But there was the sense of improving the lives of one person, but then also changing, being part of a social change right? out of the 60s and 70s really trying to, you know, make some systemic changes in our society. And I think the art plays a huge role has played a huge role. But you know, it's there's so much unfinished work, just so much unfinished work. In a variety in employment, people not having as many opportunities as they need to the health disparities impact in our criminal justice system, you know, just the social interaction, social engagement, people feeling very isolated. So there's so much work to be done. But the arc has been there, and it hopefully will continue to be there.

Unknown Speaker  5:22  
And so what's your current role at the arc right now?

Unknown Speaker  5:24  
Sure. I'm president of the arc of the United States which is the at the at the national level. My role is to chair the board of directors and to really provide governance and policy direction for the organization of the full time staff Peter burns, our chief executive officer and Julie Ward, who heads up our our policy team and we have a communications team. They do the day to day work, and they really interface with our chapter executives or national conference of executives, working with families and and really overseas The centers that we have of excellence. And I hopefully can talk more about some of those centers, though we focus on thought leadership in particular areas affecting individuals with intellectual developmental disabilities. So as board chair, you know, we have meetings on a regular basis, I chaired the executive committee. And so we provide guidance in a sounding board and direction for the senior for the full time page staff.

Unknown Speaker  6:25  
So you went over some of the initiatives that the arc has, which obviously has grown over time, and some of them are just really hot topics right now? Just, I don't know. So by coincidence, but so I wanted to kind of start with those. I think they get the full scope of everything that you do people have to go to your website, or actually you have a very active Facebook account as well. It gives really good information. But let's start with health. And we're going to start specifically with care around COVID-19. And I want to start there because the Ark is been very active with filing suits against states that have discriminatory policies against individuals with disabilities. So can you talk about what some of those policies were and how you're combating them?

Unknown Speaker  7:14  
Sure. Thank you for bringing that up. And it's very timely that we meet because last last week, June 26, we're taping this on June 29. The Ark along with other disability rights advocates reached a resolution with the Office of Civil Rights in Department of Health and Human Services regarding Tennessee's policy with regard to ethical allocation of scarce resources during COVID. And so, that resulted in a number of really, I think nationally, first time ever changes with regard to what we were alleging. Now, let's set the stage a little bit in the sense that no one was prepared for COVID no one, you know, really thought that this was going to be happening. Nobody will be One day and said, Boy, we're going to be entering into a worldwide pandemic, right. But the underlying health care needs of individuals with intellectual and developmental disabilities, there's always been a disparity in access and ability to be treated in a way that folks without disabilities are treated in terms of in terms of access. So one of the issues that the healthcare institutions were facing and healthcare providers were facing was allocation of scarce resources, and how do you really sort of triage or allocate resources when there's such a high degree of need? And you're basically deciding who gets what level of services and so there was some key precedent setting changes to Tennessee's policy to avoid discrimination against folks with disabilities and on based on age as well, so that there would be no categorical exclusions based on disability or resource intensity. What does that mean? It means in an interview I can't be excluded from medical treatment based solely on a diagnosed disability, or in the fact that the under individual might need more time or more resources to recover because they have a disability. And this is the first time that the Office of Civil Rights has addressed the issue of resource intensity. So sometimes people would make an assumption that a person's ability to respond to treatment would based solely on stereotypes or medical personnel now must perform an individualized assessment

Unknown Speaker  9:34  
based on each person's need, and the best objective for current medical evidence. That's one piece just blatantly, don't discriminate on the basis of disability don't make treatment decisions based on stereotypical assumptions about an individual's needs. Second, is now Tennessee is the first state in the nation to explicitly eliminate long term support drivability as a consideration and treatment decisions. And rather, looking at survivability is a factor. That's really fraught with speculation, right? It's fraught with with mistaken stereotypes and assumptions about the quality of life and now it providers must determine is imminence of mortality moment of death considerations as one of the considerations in the guidance? That's key? Right? Well, you know, and you can see an underlying theme now, right? It's about stereotypes. It's about mistaken assumptions that are common in general society, but also common in healthcare. The other is really bought really leading on the Americans with Disabilities Act, which is a very wide sweeping federal piece of legislation that prohibits discrimination based on disability and also requires both private companies and public entities to provide reasonable accommodation based on an investment Rules needs with respect to their disability. And so now Tennessee's guidance requires hospitals to make reasonable accommodation to the tool that's used to prioritize medical treatment. And that so that's to avoid penalizing people with underlying conditions that are unrelated to their benefit for treatment. So let's look at this the first time that's weighed in with respect to assessment tools. And finally, you know, it may sound really obvious, but if you need a ventilator, on a day in and day out basis, so if you're on a ventilator in your residence and you develop COVID, you go to the facility, nobody should be able to take your ventilator away simply because they feel it, somebody else needs it more than you. So there's reallocation of personal ventilators explicitly prohibited in this new resolution. So that medical person may not reallocate the personal ventre ventilator of a patient using ventilator in their daily lives. So those are the key issues, that it's just not the argument Center for Public representation in Tennessee. Disability Rights Advocates have have worked really hard to do this, but this is going on nationally. Right. And one of the real challenges that we're having in our folks lives is isolation. People are very feeling very, very isolated. And families have had to make choices those those individuals who have families, maybe the living with in a residential setting, or they're living with friends, they have to make the choice that they're going to stay in the residential setting, and have their families drive by say and wave right? Or are they going to go back home and then then leave their friends supported when so it's been a very trying situation, and I am really proud of the work that your legal advocacy group has done with regard to this issue.

Unknown Speaker  12:54  
It is so timely I had a colleague of Vanderbilt that actually emailed me on Friday with The article announcing the resolution for Tennessee because it's obviously I'm in Tennessee. So it's just it's outstanding the work that you guys are doing across the nation. And most people don't even realize that these regulations are in place to start with, like I remember Italy announced something like if you're over the age of 60, and get COVID, you don't get a ventilator. And like we were in shock, you know, and then we find out well, we kind of have some states have some similar guidance in our language as well. So it's good to have kits to counter that.

Unknown Speaker  13:36  
Right now in credit also goes to the Office of Civil Rights, this department of health and human services they they really stepped up and so you know, we can't take a victory lap yet, right? I mean, I mean advocacy is, is like and I always think about advocacy as something that continues You can't let up and it's pushing a huge, older, as big as a van up ramp, and you have to push it, but you need other people pushing it up and you have to push it up, you continue to have that pressure. And if you let go, it's going to roll back on you. So it just continues because what we're facing as a, as a human rights and civil rights organization is is systemic generational discrimination on the basis of disability, which has led to patterns of conduct patterns of behavior, which many people find to be an acceptable way of making decisions in health care and employment and in, in, in housing, and it's just simply wrong. And that's what we're working on. I'm trying to turn the page on that.

Unknown Speaker  14:40  
And as you say, nobody saw this coming. Nobody saw COVID-19 coming, but health initiatives have been a part of the arc for a long time. So can you speak to that side of it, what you were doing even before COVID came along?

Unknown Speaker  14:53  
Sure. Well, it's really recognizing the social determinants of health is about diet. It's about exercise, it's about alleviating impact of poverty. It's about impacts of not having access to those things that we recognize impact health on a day in and day out basis. Right. And so it's really providing that level of support and advocacy around access to health care. And so that's just sort of fundamentally something that we've been working on for decades. Right.

Unknown Speaker  15:27  
Another area and another initiative that you work on this also very hot topic right now is the criminal justice system. And I know that right now, it's it's very much under a microscope. And again, it's something that you guys have been working on for a while. So could you tell us a little bit why you have even the need to work with the criminal justice system for individuals with a disability?

Unknown Speaker  15:51  
Sure. So the the arc of the United States has sponsored and created the National Center for criminal justice disability, and that is intended to really serve as a clearinghouse and as best practices in guiding individuals, witnesses, potential defendants victims, their interface with the criminal justice system across the country, and people with disabilities get involved in any number of ways with the criminal justice system. The prevalence of individuals who are killed in by police ruderman Foundation did a study that ranges anywhere from 3030 to 50% of individuals who are killed by police through the rest are individuals with disabilities. Wow. That's a huge number. Yeah, there is. There is a pattern, often that that occurs in any number of different strategies. Sometimes there's a call from a family member or If somebody's having, you know, difficulty in a home environment, and they ask for the extra treatment, they ask for maybe assistance and assistance to transfer to a mental health facility, involuntary commitment or whatever. And police arrive and rather than engage in reflective listening and approaching this in a way that a crisis intervention team might, in a human service setting or in a healthcare setting, they're they're overreacting. And then that triggers a fight and flight response in many individuals who just simply may not have the emotional intelligence skills to to deal with flashing blue lights or, or they get scared and then the scuffle breaks down and then escalates, right, you know, from from there. And so there's lots of sort of literature out there that's been out there for a number of years regarding the disproportionate number of folks with disabilities Who are killed in being taken into police custody or interaction in the community. Also, persons with disabilities are dramatically dramatically over represented in our nation's prisons in our jails, and that if you have a cognitive disability, you're about three times more prevalent to be in a jail or prison. And that's based on a Bureau of Justice Statistics, okay, that there's three, three times more likely to be present in a prison. So, you know, let's put a face to this. Right. Listen, let's put a couple couple faces to this. There was a there was a young man named some Nellie Watson who was I believe in Virginia, and he was 28 years old. And he was in front of us outside of a library. Special Ed student at that time was 18 years old. He was on art, okay. And he was approached by law enforcement. He said there was a blast. Man outside, maybe armed and so he was approached. Now, though he is a black knight with autism and intellectual disability, law enforcement approached him. a scuffle broke up, because he engaged in what I consider a fight, fight or flight. he panicked, right? And rather than attempting to talk him down or to respond to him as a human, with feelings and emotions, it was, you know, he was it was there was violence and both the law enforcement official and in LA were injured. He was charged and convicted of assaulting assault on an officer. And as a result of not getting treatments right in the facility in a jail. He was subject to being tased. He couldn't he was treated in a fashion where it was very difficult for him to respond behaviorally. So he went through a number of and I'll go through the details. But there was a tremendous amount of abuse that he was subjected to in this prison resulting in, you know, post traumatic stress disorder and behavioral challenges Now, now, he his situation is was really intolerable. And the governor of Virginia at the time granted a conditional part. Okay. What that means, though, is that he got out of prison, and he got to live in less restrictive alternatives, but he still has the conviction of standing over him. So it's just uncomfortable, right. And so what we're calling for is a complete pardon of him so that he doesn't have to face the prospect of going back to a correctional facility. He committed no crime, other than he was an individual with a disability and law enforcement and he ran into an unfortunate setting. He's not going to learn by living in a correctional facility right Rather than being being abused Now, last week, I became aware of another set another situation and I don't have all the facts because it's so recent but there was a man named Christopher Howell

Unknown Speaker  21:15  
who was arrested a couple of years ago in Florida and he was arrested and convicted of stealing for phone charges $15 each so $60 petty theft right and in a pocket knife from from, I think a Home Depot. He was sentenced for four years.

Unknown Speaker  21:37  
He was sentenced for four years and was was serving his time when he got into prison in February 20 1920 2019. He was due to be released in 2022. A couple of Thursday's ago he was at Lake Correctional Institution. He was murdered. He was murdered in in the correctional facility. His neck was broken. I am taught he had an intellectual disability. Right. And it's under investigation now. Right? So this type of this type of condition, what it represents, to me is an advocate as a volunteer advocate for the arc, right? I'm, I this is not something that I do every day. But you know, you can't help but find yourself seeing these things. And most people listening to this podcast, say Who knew? Right? Who knew who knew about these statistics about the number of people with disabilities who are disproportionately in prisons, they don't need in this city, these are not stealing for charges, you know, you know, that thing but for years, right, it seems disproportionate, right to the to the crime. And I think what's happened from my layman's point of view is that is simply to be a lack of investment in human capital. In resources, you know that that we're not training our law enforcement. I have learned forcement A members of my family. I have a nephew, who is on the Massachusetts State Police. I have a cousin who was a chief of police of a town. I mean, most cops, I know want to do the right thing. And they went into it with the idea of contributing to the society. Right. But at the same time, we're just not investing. We're putting too much pressure too much on on law enforcement. Yeah, there are bad apples. And obviously we've seen that in the George Floyd murder, you know, in any number of situations that you listen, as we all have become much more sensitive and aware of an outrage over. It also reflects, I believe, a lack of investment in our people, and an unwillingness to recognize that we're all first. Live with our humanity first, right and it really becomes a question of of the work of Dr. So that's a long winded answer. But under the circumstances, I wanted to really, you know, delve into that to give your listeners a sense that, you know, I think the arc as a human rights civil rights organization is absolutely committed to reversing the trend that views individuals with disabilities, as you know, expendable or subjected to institutions. If I may, and then just kind of gonna go off and on a little bit of a, of a reflection. After I worked at that very first job I talked to you about you know, in as a summer camp counselor, I worked in a facility called belchertown state school in Massachusetts mouths in college. And my very first job as a supervisor was I was hired to be a supervisor to bring in college volunteers to spend three days, three visits a week into some of the most vulnerable folks in That institution, there were some people who I was oriented by who were long term workers in that facility. They referred to the individuals, I was working with nearly 20 and 21 year old guy, you know, going in working in this environment with very little experience, and what was happening, they were describing individuals, not by their name, but by their physical characteristics by their behavioral characteristics. And, you know, that was how individuals were treated, not as human beings without dignity and respect. Now, I think, you know, we've come a long way. We've changed lots of hearts and minds over the course of the last 40 plus years, but there's insidious, insidious sense that it's a we versus them, it's and I think if we begin to have a conversation, that it's about us, you know, in the And the work of the Ark is joining with other like minded groups to, you know, to really focus on a creating a society that is, you know, based on love not hate. It's based on respect, not demagoguery or degradation, collaboration on polarization, or division, really, in really thinking about long term, right thinking and thinking about what our investments are, what kind of what kind of society we want to make. So I hope that's helpful to give your listeners a little bit of idea of what the what the work is, both with respect to health care, as well as criminal justice, right?

Unknown Speaker  26:40  
And somewhat connected

Unknown Speaker  26:43  
in a kind of a tangent way, is you also do work around individuals with disabilities who have been sexually abused. I'm gonna be completely honest and say that this is an area that I have just recently been made aware of. There's an agency up in Ohio that I recently have talked to, and that's that's what they do. They help families, you know, through the legal system and through therapy and through just talking about it. cope with their their family members who have been abused, and I didn't realize there was such a high level of it happening amongst individuals with disabilities. And I know that the ark, this is another one of your initiatives. So can you again, give us some of the statistics as well is what you're doing to combat that?

Unknown Speaker  27:32  
Sure.

Unknown Speaker  27:34  
So so what we have understand from a statistical perspective is that individuals with disabilities are three times more likely to be victims of abuse and victimization as adolescents and adults and three times more likely to be sexually abused as children. And so it's a it's obviously a terrible statistic. And and it's Some of the base is based on the lack of the lack of respect and dignity. Obviously, a person a perpetrator would have anything of a what can we do to prevent it? What can we do to call it out? You know, when prevalent, I think issue is the isolation that that many people with disabilities have face, social isolation, lack of safeguards, in terms of ability to communicate ability to have trusted advisors, lack of access to transportation, sort of, you know, being trapped. And I worry about this COVID environment that we're that we're in, you know, just because things aren't getting reported doesn't mean they're not happening. It may just simply be that some of the natural safeguards, like teachers and counselors and employment supports aren't aren't on having the impact or the connection with folks and therefore, you know, Lord knows. So part of it is education, right? Part of it is is is teaching people about self or self awareness, a warning signs, speak up, things that are inappropriate ident call people out. And it's also holding people accountable. You know, so part of it is not, you know, and I spoke earlier about the victimization of individuals with disabilities by the criminal justice system in the hands of law enforcement or correctional facilities, because of lack of training, lack of support, lack of respect, whatever the case may be, and call it calling them out. But we also have to also be very zealous and aggressive with regard to working with our district attorneys, working with prosecutors, working with law enforcement, to be able to investigate, prosecute, and follow through with punishment for those who victimize individuals who can't help themselves.

Unknown Speaker  29:55  
And so, the next couple I want to get into are more pleasant to talk about. It has been kind of heavy, but it's extremely important work. I mean, I can't even state how important it is that the initiatives that we've already talked about. But you also just want full living for individuals with disabilities. Like you talked about the camp that you worked at. So like giving experiences and life experiences that all of us have. So the ark has something called wings for autism wings for all. Again, this is a new initiative I've never heard of. So I'm really excited to hear what this is.

Unknown Speaker  30:34  
Yeah, so I'm from Massachusetts, and that we call this this is a wicked cool. It started at the Charles River Ark in Massachusetts. And it was a recognition that kids and young people most adults with with with autism, had difficulty with going through the TSA going through the security. And so there was a reach out I think initially was to JetBlue but it's now expanded to other other other airlines. And outreach was made to the folks at Logan International Airport Boston, around how can we help families and individuals with autism navigate, you know, the security that we all have to go through after 911. Right. And I go through the metal detectors and the ID and the lines and the sights and the sounds and the coat and the claustrophobic feeling of being herded through this funnel, right, right of security and screening. And so what they did was that they developed a plan for how having families come in and go through a closed down one portion of the security area. And so you would come with your son and daughter with other family members. And you guys would be the only ones there. Right and you would go through this process. of this is the you know, metal detector. This is the ID This is the process. And so you go through in a very reasonably accommodated fashion. Right. Remember I talked about earlier that reasonable accommodation under the American Disabilities Act, right? This is providing basic public accommodation access. And so, you know, it's done in a non threatening fashion as a tremendous success. And the commitment now is to expand it and it's expanded. And Pete, if Peter was on the phone, he would you Peter burns, our CEO, would be able to tell you how many how many airports but it's just just going up. It's just blown up, and it's great. And so any number of thousands of families have benefited from from Wings Over over autism and it's just one of those really feel good things. And it demonstrates to me though, a way of impacting change, by reaching out to folks who want to do the right thing, and I'm basically an optimist, right? I mean, I really think that people want to do the right thing. And that, that if you reach into companies and you reach into TSA and you reach into other organizations say, put a face put a humanity on the particular issue you're trying to reach out to, this is the kind of thing that happens, right is that, you know, you look back and you they all collaborated together to say, how can we make travel experience for individuals with autism, major hypersensitivity to touch, maybe hypersensitivity to, to light to sound to quick movements, and just bring it down, being very mindful about it kind of being in the present, slowing the mind down, just getting getting through that process. And now folks can go to Disney or Walgreens or wherever they want and not have that fear of how crap how are we going to go through this right right. So so before Wings, wings for autism, people's default was, you know, let's just get in the van. And and we'll take a few days and go down to Orlando or go to wherever we are and not, not fly. And so this has just been a major game changer for families and enhance their quality of life.

Unknown Speaker  34:17  
Yeah, it's amazing.

Unknown Speaker  34:20  
And like you said, it just allows for so many more experiences and not the stress of Oh, so much stress that flying for all of us have another initiative, which, as I say, my colleagues here in Tennessee would be angry with me if I didn't talk about employment, because that's my background. You also do a lot around supported integrated employment. And before we get to some of the initiatives that you have or how you support that, I want to say when you go to your website, you have a gentleman who's in a wheelchair, that is like with a headset, and he is on a laptop and he's in business. As casual clothing, and then you have another young lady who looks like she's in a call center of some sort. And why do I say that's important? Again, if you excuse me because I'm going to go on a tangent because this is my passion. So many times we see more menial jobs, you know, jobs that we assume that this population can only do like cleaning, wiping down tables and things like this. So to give the image of individuals with intellectual developmental disabilities in a professional office setting is very important. So having said all my rants,

Unknown Speaker  35:38  
I will allow you to continue

Unknown Speaker  35:42  
preaching to the choir.

Unknown Speaker  35:43  
So what are some of the initiatives that the ark has around employment?

Unknown Speaker  35:47  
Right so we have the ark to work initiative and and that's clearly set forth in the website and we recognize that employers companies need need some education, some support and training Around HR and around developing positions for folks to have real jobs real, real meaningful participation, not as you say in the menial tasks. And so, we're working with companies like SAP, in so many others, to provide technical expertise, assistance, to businesses, to to find work, I know you're an expert in this area, given your work over the course of your career. You know, having done all the work that you do that once identity is built around often what you do for work right and and so, you know, if we truly and I believe we are committed to enhancing the lives of individuals with intellectual disabilities, raising a sense of, of dignity and their value in their contribution, it is our responsibility to equip them With the necessary skills, as well as educate employers, right to the possibility, you know, think about the possibility of the potential, right. And so that's really what we're doing. And I think our website, and the resources on the ark website can provide opportunities for any employer who may be listening to your podcast to say I do want to explore and change the lives of maybe one person and provide a workforce. That is a diverse workforce. That is an opportunity to, you know, provide job but also to provide an opportunity for folks who haven't been introduced to the world of disability. that disability is not a defining characteristic of who you are. It's just an aspect of your of your being of your life, right. And so there's so many pieces to the importance of doing this. So called That's helpful and giving you sort of my view of, of our work in that area.

Unknown Speaker  38:04  
It does. And I love how you talked about it as diversity, because companies have come to realize that diversity is good for the bottom dollar even. It's good for your culture, it's good for turnover, it's good for your in your revenue. And I think companies are just starting to realize that disability is diversity as well. Right? I think it's been focused on other areas from age to race, all those things. And so there's actually a hashtag on social media, that disability is diversity. So it's trying to get these companies to, you know, understand that as well. It's a process. Like you said, it's about educating.

Unknown Speaker  38:47  
And last week, last week, a government accounting office, issued a report to hiring in federal agencies and I thought it was interesting It looked at the years 2011 to 2015 plus 2016 and 17 across 24 different agencies with the goal created by President Obama, of federal government hiring 100,000 people by the year 2015. And they exceeded that goal, right. over those years. However, they found that 39% of individuals with disabilities hired between the years 2011 and 2017, stayed less than one year, and approximately 60% stayed less than two years. And of the total individuals without disabilities hired within the same time period. They stayed approximately 43% 43% stayed less than one year, and 60% stayed less than two years. So there's a retention issue there and one of the recommendations is what are we doing with respect to training and education for employers. To provide through reasonable accommodation. And second, what are we doing with respect to post employment interviews? You know, how did those reasonable accommodations what could have we done differently in order to make the work experience? So, you know, this is a learning this is a this is just a continuing process of, of getting better right at what we do?

Unknown Speaker  40:23  
Absolutely.

Unknown Speaker  40:26  
You know, another aspect of that is making sure there's good job matches, right? Because I know that that is something that that provider, the people who are helping individuals get jobs and, and it's their job and they love what they're doing. But historically, we haven't done a great job of, there's a job opening. But you know, Jennifer has never said she likes that type of job, but it's a job opening. So let's go get it for Jennifer. So so you know, making sure we're putting the right people in the right jobs. Because at the end of the day, we're all exactly the same Which is we want to go to work somewhere that we enjoy and where we feel like we're contributing.

Unknown Speaker  41:05  
Right? Right. I mean, if you think about your own our own experience and the listeners think about those jobs that you really hated going to, why did you hate going to it? Well, you didn't like it. It didn't maybe you didn't like the people that didn't like what how you're being treated. Maybe there were terms and conditions. And you think about those opportunities where you really loved it and you feel like like you're in the flow? Well, it's pretty much because you're enjoying what you're doing. You're enjoying the environment. And you're speaking, it's just just creating that synergy and matching as you described, right? Just

Unknown Speaker  41:35  
Exactly. Now, in my job, I work with some local Ark offices like the we have like the ark of Williamson County, and ark of Davidson County, but I also work with the ark of Tennessee, which is kind of this completely different entity. I know they're not but you know, as far as so can you explain the structure a little bit of how the army

Unknown Speaker  42:02  
Sure, so we're Federation. Okay, right. We're a federation, which means that I was going to say controlled anarchy, but it's not. It's a multi layered membership based federation of local, state and national organizations, at the local levels, mostly nonprofit arcs that are service providers, some run community based services for folks to the Medicaid program. And so in providing a bill, think about the arc services as everybody knows what Special Olympics is, right? Everybody knows what that is. Well, the arc does everything else. Plus Plus we do right with plus we do recreation, okay. Plus we do everything else. We do employment, we do housing, we do advocacy at the local but at the local level, a lot of it is primarily driven by service delivery. At the at the regional or state level, the arc of Tennessee is engaged. In, in legislative advocacy advocacy at the at the governor's level in the executive branch, and also perhaps in some advocacy in the judicial branch, as well as lobbying around wages, initiatives, thought leadership and bringing people together to solve statewide problems that perhaps local organizations can't do on their own. Right. Right. So it provides collaboration, and then the federal level is looking at doing that as at the National Center, right. So it's advocating to Congress, the White House executive agencies and promoting legal advocacy at the the federal court system, collaborating with our partners throughout throughout the country and creating these centers. So you have its grassroots, you know, bottoms up. I recognize I'm past president of the arc of of Massachusetts. I was on the board of the poker masters for many, many years. I'm currently on the ark of Cape Cod board. In here in Massachusetts, and a lot of the issues and solutions are provided at the local level. This isn't just an inside the beltway, you know, approach. Our members, our chapters are the lifeblood, they're the ones who really are the mainstay in the backbone of what we do on a day in and day out basis. And so that so they support the state organizations. In each one of these organizations are nonprofit, they have boards of directors, so you're talking 10s of thousands of people who are engaged either in employment opportunities, leadership positions, direct support positions, volunteers in any number of levels than the federal, the National Board, primarily populated by folks who have been involved in in either local or state arc organizations. They're also people who have come in from variety of sectors who may not have experienced with the arc community, but bringing in experience in business experience and entertainment experience in communications and marketing and that kind of thing, to create a balanced approach in how we lead the arc into the future, we're coming into the close and just the beginning of a new strategic framework for the ark. It's been about a year and a half a strategic planning process. And this summer, it's summer 2020, we anticipate the board of directors will be adopting a new strategic framework video, that'll take us within the next three to five years to plan out any farther than that is really not useful, but really focused on increasing our visibility as an organization and enhancing and increasing and increasing the humanity. You know, that people don't think of individuals with intellectual developmental disabilities as as them versus us. It's all right. It's one country and it's about and it's about really enhancing the humanity of each one of us as Americans. And we play a vital role in reaching out to other organizations to share that vision, that it's time to end the kind of systemic, discriminatory patterns of behavior within institutions within our court system within our educational or healthcare settings. To bring about real change means about bringing an investment to local communities, to state communities, investing in our people, and efforts that bring us together in the criminal justice system and housing, and education, and all other aspects of what we consider to be, I want to we want to life like everyone else, right? You want a real job, we want to be able to live in a place where we we want to live and be around people who loved us, and we'd love them and we want to have a good life. That's right.

Unknown Speaker  46:52  
So this is my last question. And it's kind of a I guess it's a vague question because I just thought of it just now has Anybody from abroad ever reached out to you that you know of, because they're just so impressed with your structure in the impact that you're having, like any other countries reach out to try to learn from you or or establish like an arc of England or anything like that.

Unknown Speaker  47:15  
What there's an international organization called inclusion International. And and so they have and we're a member organization of that and and we co collaborated a few years ago with them in creating a symposium. I think it was out in Indianapolis. So yeah, I mean, I mean, every, every culture is different, right? Every nation is different. And so, listen, the arc isn't perfect. We continue to look at how we can be better and you never want to deal with arrogance and complacency. in any fashion. I think we always have to ask ourselves, you know, how can we best improve not only our members experience, but but I think by looking broadly and thinking About how we impact in our communities or society not to get too, you know, brought about this, but I think that's part of that's a big part of the answer, which is really, really thinking large around how this organization can continue to impact the lives of individuals.

Unknown Speaker  48:17  
So now I have some personal questions, just a few sure we always end like that. First one for you is who was a big influence on you, when you were younger to turn you into the person you are today? Whether it's professionally or through your volunteer work?

Unknown Speaker  48:33  
Yeah, that's a great question. I was surrounded, growing up with some great mentors. Just as a young man, you know, I always had a paper route. I always had a job. My dad obviously played a huge role in making sure that you know, you always made your way and, you know, as Be kind to people, but don't, but you're not a doormat, either. Right. You know, I think you had a huge impact. You know, some of my early bosses and unrelated disability communities, you know, I worked in a grocery store six days a week and learn the value of showing up every day, right? And whether you wanted to or not going to Dubois as an adult, he was the first paid executive director of the arc of the United States. He was a mentor to me, I served as Deputy Commissioner of the Massachusetts Department of Developmental Services in the 90s. He taught at Brandeis, he taught at Harvard, I took his course and Harvard when I was getting a Master's there. And he was a huge influence on the he's a lawyer, civil rights lawyer and always said, he always reminded me is any chance he had was Remember, we're just not a service provider organization. We are a human rights organization first, and you have an opportunity if you're part of the occupant change the world. And so you know, he was a huge influence impact wolf wolfensberger, who wrote at Syracuse University, somebody I read never I met him once in a training but so those are some of the thought leaders that helped me along. So on a personal level is just those people he saw every single day, you know, as you develop your character and your of who you are. And then as you get older, there are people who help inform you around kind of how to approach things. And so those are those are a couple books.

Unknown Speaker  50:24  
Nice.

Unknown Speaker  50:26  
Last question. One day we will get on airplanes. Again, I'm pretty convinced of that. But if you if you had the opportunity to sit down like at an airport next to somebody and just have a drink and chat, what celebrity or famous person or person all of us know what you love to sit down and just shoot the gap with them.

Unknown Speaker  50:45  
That's a hard one. a hard one. I think Oprah might be somebody I'd be interested in. What I admire about Oprah is her communication skills and and the challenges she's overcome lots of lots of challenges in her life. And, you know, I admire her optimism and her belief in the human spirit. I consider her to be a really a real, real American hero.

Unknown Speaker  51:14  
And so to bring it all full circle now This podcast is listened to all across the world, not every country, but it's pretty broadly listened to. And Oprah is from Tennessee and went to Tennessee State University. So once again, you know, Tennessee is

Unknown Speaker  51:29  
a good thing.

Unknown Speaker  51:31  
And one of the good things that happened is because of help from the ark in passing of this covid resolution, so, look, Fred, I really want to thank you for your time you've been great and I want to thank you for your work and in the fact that you're volunteering to do this as well as just absolutely Listen,

Unknown Speaker  51:47  
listen, it's it's it's my it's really my honor and privilege and thank you for all the work that you do. Because I looked, of all your experience your background, you're very impressive in what you Done.

Unknown Speaker  52:04  
You can get more information on the ark from their website at the ark.org. That's the ark.org. And as I stated in the episode, you can also follow their Facebook page which has great information. Also in the episode I spoke about an agency that supports victims and the families of victims who have experienced sexual abuse. That agency in northeastern Ohio is called voices of change 2018 You can find them online at voices of change 20 eighteen.com Finally, make sure to subscribe to the landscape on Apple podcasts or your favorite podcast app and leave a review. Next, I will be hosting a series of episodes around the Olympics, starting with an interview with six time Paralympic medal winning hand cyclists. Sanchez, who is looking to add some gold medals in next year's games. We'll see you then.

Transcribed by https://otter.ai