Locke, Lampman: Mission of MISILC

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 everyone! Hi you awesome listeners! Oh my goodness, you know, you are so great, you know that? Joyce Bender. Here I am, 20th anniversary of my show. Wouldn't be doing this all these years if it weren't for you. So thank you from the bottom of my heart. And make sure you share this show with other people so we continue our crusade to find employment and quality of life for Americans with disabilities. You know, I'm the CEO and founder of Bender Consulting Services that I incorporated that I founded in 1995 as a for-profit company for two reasons. Number one, I wanted to provide a rich benefits program. And number two, no pity. No pity. People with disabilities need paychecks, not pity. And so when I embarked on this, you know, I thought, wow, as time goes on, we're going to really reduce that unemployment. Had you told me then that in 2023 we would have double the unemployment of people without disabilities and 70% of people with disabilities not counted in the workforce, I would never have believed it. So as a woman living with epilepsy, I just want to tell you, we've got to work together. And companies, hiring people with disabilities is the best investment you could ever make. But, you know, Tony Coelho taught me, the author of The ADA, he said, "When you get a chance to shake the podium, speak up." I'm speaking up., but I need all of you to speak up. So you're going to love the show today because we have those advocates that do speak up. But first, hey Yoshiko Dart, special shout out to you, Yoshiko. Hope you're having a great day. You know, Yoshiko, where do you see my tree in July for Disability Pride Month? My, the tree in my office, where do you see it? I am so appreciative of all the listeners, not just in North America, but around the world. So, you know who we had the largest listening audience from this past week? Australia. So Australia, France, the United Kingdom, Brazil, China, Japan, Russia, Korea, South Korea, Canada, Germany, Saudi Arabia, Egypt, Spain, and Sweden. All of those countries had people listening to this show. Do you know how awesome that is? Those people around the world. Now listen, people around the world, you make sure you tell other people about this show. English-speaking people, you can be an advocate. You can be an advocate by doing that one thing that I just told you to do. And it's awesome. It's awesome. You know, I have a special friend. That's probably why Brazil's moving up here. He is in Brazil, Richard Roberts. He is an absolutely awesome person. He is in Brazil with the U.S. State Department. I met him over 10 years ago when he was in South Korea, when I went to South Korea. So I go with the State Department across the country, and the whole purpose is talking about Dignity, value, and employment. And that Richard, oh my goodness, he's like turned into a disability rights advocate. He could be the speaker instead of me. But I love you, Richard. And Gangyang in South Korea, I love you. Richard was in Japan, so to all of my friends in Japan with the State Department, And in Indonesia and in Kazakhstan. I love you all. Thank you for your support. And I have to thank Highmark. Highmark is the lead sponsor of this show. And they have been. And if you go back, and you know, because you can listen to any of the old shows, just so you know that. Go to Spotify, Go to voiceamerica.com. Go to Apple. Go to benderconsult.com. And you can hear any of the old shows. If you go back to January 2023, you will hear the CEO of Hyman. Wow. Here it is, a huge company. Wait till you hear what he has to say. So with that, I want to know what our guests have to say about what's going on in this country. And today we have Stephen Locke and Jan Lappman. Steve is the executive director and Jan is on the Michigan Statewide Independent Living Council. And I'm thrilled to have both of you Thank you for joining. Uh, Steve, I'm going to start with you. Um, you know what happens? Our listeners around the world, they want to know, oh, tell me more about this person. So I started having guests tell their story. So if you don't mind, Steve, would you share your story with our listeners? Like where you grew up, went to school, how did you get this role, How about if we start with you and then we'll move on to Jan?

That sounds fantastic, Joyce, and thank you so much for the honor of being on your show. Um, we're so excited to be here. I'm a 54-year-old white gay man with two hidden disabilities, and I grew up in Mid-Michigan. I was born in Flint, Michigan, where the water crisis was at, and it's still going on, uh, and I have not moved away from Michigan. I'm Michigan through and through. I'm happily married to my husband Tony, and we've been together for 30 years. I'm the youngest of 3 siblings, and our parents still live in the same house we were raised in. My sister was born with a developmental disability and without eardrums, which they didn't discover until she was about 2 years old. When my brother was born in 1966, they used the forceps during the birthing process and ended up disconnecting both of the retinas in the backs of his eyes, causing lifelong vision issues for him. Our mom was a fierce disability advocate for my siblings, and she is really the reason, uh, why the Clow School District started a special education program in the early '70s. I definitely gained the disability advocacy trait from my mom. My childhood consisted of hiding my sexual orientation due to the heavy and very negative messaging I got from society and the church we attended with my grandmother. All of this culminated in me being diagnosed with clinical depression at the age of 15 and a suicide attempt at 19. Because of my siblings and parents, in hindsight, I guess I've always been a social justice advocate. I definitely live at the intersection of disability and sexual orientation, and I never want another child to have to go through the self-loathing that I did growing up. I started in Michigan's Independent Living Network about 17 years ago after I left a job at the U.S. Department of Housing and Urban Development., and I saw an opening for an associate director position at a local center for independent living. And I hired in there part-time for 20 hours a week. I worked there for 13 years, my last 4 years as the executive director of that center for independent living. And then I moved into this role on the Statewide Independent Living Council. While I was still employed at our center for independent living, I was appointed by our governor to this council and I served 6 years on that council. Um, I'm just, uh, an advocate through and through for people that deserve a fair shake in life, and that's not how this has always been for people with disabilities. So in my heart, I've been an advocate all of my life, and I will continue that work until I am no longer on this planet.

You know what, I want to say something first. We've had people on celebrating Pride Month. So this story you just told is perfect for the month. I want to tell you, Steve, that many— we on the radio show, just through my speaking across the country, many young people with, uh, who are in the LGBTQ community They also end up with depression and suicidal ideation. And a friend of mine in the gay community said, "Well, think about what people go through. Think about this hiding who you are, uh, and the feelings you have about yourself." And the connection to mental health. Do you agree with that?

I absolutely do, Joyce Bender, and I think that that has allowed me to become a much more compassionate person. I've been there. I've been down in the trenches. I know what that feels like. I know what it feels like to not like yourself because of the messaging that you get from the outside world. And I am so happy that science has come further along and we're understanding all the diverse ways that we all come into this world. It's not a black and white world. It's a rainbow world. And every one of us deserves to be celebrated.

Wow. That's a great and profound statement, Steve. Well, I say kudos to you and what you're doing. Well, that's quite the story, Jan. I'm really excited to have a council member on the show today. Let's hear your story. Like, where did you grow up? Go to school, and how did you get to where you are today?

Sure, thank you. Thank you so much for having me on and also for asking that question. Oh my goodness, so I was born and raised in Saginaw, Michigan, just north of Flint. And my father was a farmer who worked at General Motors during the non-growing season. So from like about November until about March, Dad worked at General Motors, and then the rest of the time he was on some kind of leave of absence so that he could work on our farm. And so, I grew up on a farm, and it was in the— you know, I was born in 1962, and I have lots of early memories as a young child of on our farm having lots of different kinds of people around that were helping with the farm and helping work on the farm. And so I'll just say this. When my father passed away some years ago, and at his funeral, there were so many people that I never even had met, or maybe I had met and I didn't remember meeting, right? And person after person would come up to me and say, and shake my hand and, you know, say they really appreciated the fact that my dad had given them a chance for work when nobody else would, both on our farm and then later on. When he, when he started a painting company. And so I grew up with this notion of like that everybody belongs and that everybody has something to contribute and should be given a chance to make that contribution. So like one of my memories as a teenager was, it was my, by this time we had the painting company, and it was my job to drive down to the jail and pick up the gentlemen who were on work release that were working for my father's company. And most of those guys that worked for my dad that were on the work release, once they got released from jail, they never went back to jail, right? They went on to either continue working for Dad or getting jobs in other construction companies. And so all of these, you know, in my life, I watched my own father demonstrate how you can just, and give everybody a chance to make their contribution, and give everybody a chance to be a part of the community, and that people will rise to the occasion, right? And so when I was in college at Saginaw Valley State University, I had somehow gotten connected to the psychology department, and the idea of neuropsychology and actually doing research on what caused certain kinds of developmental disabilities, most especially There was a lot of research going on at that time around fetal alcohol syndrome and fetal alcohol spectrum disorder. And so I was involved in all of that research. And I said to myself, hmm, if I am going to like do research about just developmental disabilities, I should meet more people who have developmental disabilities. I knew that lots of my dad's employees over the years were people who had disabilities, but I had never really spent a lot of time with people who had significant disabilities. So I took a job in a group home as a direct support professional working with people who had just been discharged from the state institutions in Michigan. And so I was working with folks that had, you know, very significant barriers to housing and employment and needed 24-hour support and those kinds of things. I like to say that I was then kidnapped by the folks that lived in that first home where I worked because from that moment on I knew I wasn't gonna continue on to become a researcher, but rather I was going to continue on to walk alongside people who were trying to find their place in the community. And so I started as a direct care worker, but then I went on to various other positions in the field and my probably my favorite role, and it's a role I continue to this day, is as an advocate who, an ally who walks alongside people who are trying to really fight for their rights, if you will, and for the right of all people to be able to be a part of their community. I do have a sister with a developmental disability, Mary, who has taught me a lot. I also now am the mother of two young men whom I adopted out of the foster care system, one of whom has autism. And so I am also the mom of somebody with a developmental disability. So I've got a lot of connections to the disability world, and I've been doing this work for 38 years.

Well, you are a champion, June, you know that? Thank you so much for what you're doing. I want to just mention that people with intellectual disabilities, oh my God, they're at the bottom of the barrel with employment. They really are. It's so hard for them to find gainful employment, and that's something I'm working on And I hope I'm able to do something to make a change, but I'm sure you see that or have seen that.

Oh, absolutely. Yeah, so my sister years ago, and it was in the 1980s, I guess, she was going to the sheltered workshop and it was kind of when they were first starting to talk about supported community employment for people with intellectual disabilities. And so Mary, my sister, is like, "Oh, I want that, I want that." So at the time, her person, her, he was her guardian actually at the time, which was my husband Mark. And so Mark went to the sheltered workshop and said, "Hey, Mary would like to have a job evaluation to see what kind of community job she would be a good fit for." So they did this 3-week evaluation, and then at the end of it they had a meeting and In the meeting, the people from the sheltered workshop said that she was best suited to piecework at the sheltered workshop rather than, you know, a job in the community. And he was an accountant, not a social worker, and so he was just sitting there, you know, very quietly saying, "Well, wait, that's not what we asked for this evaluation to find out. We asked for this evaluation to find out what job Mary could get in the community where she would make at least minimum wage." And the person told Mark, "Well, you have, your expectations are not realistic." So now I'm a fiery advocate. If I'd have been in the room, I would have like probably raised the roof and, you know, said lots of things. But Mark, being the very quiet, introverted accountant that he was, he closed his little folder that he had had open to take notes and said, "Well, thank you for your time." And out he went with Mary. And they sat outside and waited for the boss to come pick her up, 'cause she uses a wheelchair. And he went back to his office and started phoning up his accounting firm clients, and he found 3 different clients who were willing to hire Mary. So Mary got to pick from 3 community jobs after she had been just told that she really, it wasn't realistic for her to think about working in the community. So that's my story about Joyce Bender. The injustice of where people with developmental disabilities have often fallen in the community employment realm.

Oh, that is terrible, but I'm so glad it worked out in the end. Sadly, that is no surprise to me, but Steve, I want to move on to you. Thank you, that was a great story, Jeanne. How about if you explain to our listeners What the Michigan State Independent Living Council, MISILC, what is the Michigan Statewide Independent Living Council, and what, what do you do? What are your responsibilities?

Sure, I'd love to, Joyce. The Michigan Statewide Independent Living Council is a governor-appointed council. All US states and territories have a SILC, that's the acronym for it that you just spelled out. S-I-L-C stands for Statewide Independent Living Council. And SILCs are, they're a requirement for each state to have in order for the continuation of the flow of federal funds for independent living programs in each state. So SILCs are federally required to be consumer-controlled with the majority of appointees being people with disabilities. So our council is a 16-member council We have 11 voting members and 5 what we call ex officio members. Those ex officio members are appointees from various state departments that provide services to people with disabilities. Our ex officios are non-voting members on the council in order to maintain true consumer control. Out of the 11 voting members, um, we have 1 Center for Independent Living director that's federally mandated to be seated at the council. And then the balance of those folks are people with disabilities who are neither Center for Independent Living employees or state employees in order to maintain that absolute consumer control. So as I said, SILCs are federally required to be consumer-controlled with the majority of appointees being people with disabilities. SILCs are one of three entities that comprise each state's independent living network. Our other two partners are the Centers for Independent Living as a collective here in Michigan and what they call the designated state entity. The designated state entity provides fiduciary services for those federal independent living funds that flow into our state. SILC's main role is to jointly develop a 3-year state plan for independent living in collaboration with the Centers for Independent Living. Based on public input that we gather from the disability community and the general public on an ongoing basis. So truly, our State Plan for Independent Living is steeped in grassroots issues. We have a variety of ways that we go out and collect information from the public. We hold town halls, we put out a community needs survey assessment, we count on our statewide disability partners to push that survey out so that we can create goals that are based in grassroots issues. Once the plan is approved by our federal oversight—

Wait, before you go on, I have a question. So, do you oversee the independent living centers, or are you just an advisor, or how does that work?

Yeah, we're a partner in the Independent Living Network. We do not have any oversight over the Centers for Independent Living. We are an autonomous governor-appointed council that gives more consumer control at the state level versus the local level, which is where the CILs have consumer control. CILs, Centers for Independent Living, are set up just like the SILC. They are federally required to have at least 51% of their staff be people with disabilities. A majority of their decision-making positions must be people with disabilities, and a majority of their boards are required to be at least 51% people with disabilities. Now, Centers for Independent Living are set up as 501 nonprofits around the country. Centers for Independent Living and CILCs were created in the Rehab Act, so we were federally created entities and I, as an executive director, I'm staff to the council and I'm responsible for all administrative aspects of council business, statewide relationship development, and coordinating partnerships with other disability service providers. Stronger together. We're trying to tear down silos between state departments, disability organizations throughout the state. Really get in there and find out what each other is doing so that we don't have duplication of services, so that we can really put our resources to the best use in advocating for independent living throughout the state and throughout the country.

Wow, that is really great. That's, that's wonderful. Yeah, I wondered what the difference was, so I'm glad that you explained that. So In the state of Michigan, what— how do you do this? Like, how do you connect? I saw on your website about resources for people with disabilities. How do you do that? How do you reach out to people in the state of Michigan? And give me a couple examples of how you connect people with disabilities in Michigan to those resources?

Sure. Um, one of the ways is through our community needs assessment that's distributed through a lot of our social media platforms. We also travel around the state and we have an informational table. We will go to ADA celebrations around the state, state fairs, Going to where people receive services. One of the things that we want to change is that Statewide Independent Living Councils and Centers for Independent Living are still one of the best-kept secrets in the country. Even though SILCs have been around since the early '90s and CILs have been around since the early '70s, these are organizations run by people with disabilities for people with disabilities. Um, CILCs are federally prohibited from being direct service providers as that is the role of the Centers for Independent Living. We frequently receive disability-related service inquiries through our social media channels, website, and phone calls. Once we identify where the requester lives, we will connect them with the appropriate Center for Independent Living. So fortunately here in Michigan, we have 15 Centers for Independent Living And every one of our counties is associated with a Center for Independent Living. It's their service territory. Those service territories are registered with the federal government. So this center has 8 counties. This one center has the entirety of the Upper Peninsula, which is a huge swath of very rural area. The Centers for Independent Living, if you've seen one Center for Independent Living, you've seen one center. They're all so different. Because they're able to be agile and really do what they need to do to meet the needs of their community. The one common thread that does run through all the Centers for Independent Living is each one of them is required to provide the same 5 federal services on top of any other local programs that they might have developed. Those 5 federally mandated services are information and referral services, independent living skills training, peer support, both individual and systems advocacy, and then a fifth core service was added back when WIOA was passed back in 2014, and those are transition services. Transition for youth coming out of the school system into adulthood, and also institutional transitions, going into nursing homes, through the Medicaid waiver program. And for folks that could live independently on their own with the necessary supports in place, it is a lot less expensive to keep someone institutionalized and in their own home. Not only that, but it is great for your mental health. Nobody wants to waste away in an institution. And so that's— those are some really exciting things that the centers are doing. And then, as I said, if you go to one center, you've only been to one. Some of them have developed incredible programs outside of these 5 core services that support people with disabilities in living their own lives in a self-determined way. I'm just really proud to be part of this network. Had I known about this a long time ago, as I said, it's a best-kept secret, I would have jumped on, on this whole network, this whole community. It's fascinating. There's so much diversity within the disability community, and it's a group that anybody can join at any time. You can be born into it, you can acquire a disability, or you can age into it. And there's so many different aspects of life from accessibility, healthcare, housing, transportation, recreation, that we, the Centers for Independent Living, work on. And at the state level, when we create that 3-year state plan for independent living, we can pull some of those things in and set goals and objectives around those and then rally our different partners around the state to join forces. A great example of that was we were fighting for increased wages for direct care professionals. And JAN has done so much work in this area. It's been absolutely fantastic. We've been able to get the governor's ear and got the wages bumped up about $2 per hour here in Michigan, but the work is not done yet. We're still nowhere near what direct care professional— direct care professionals need to be paid. We're working with Michigan State University through the IMPART Alliance, and it's about 100-some organizations that have come together to fight for direct care worker wage increases and to also professionalize direct care work, where, where we have an educational track so people become certified. Right now in Michigan, there is a huge shortage of direct care workers, and as our population ages, that's— it's already become a problem. And when, when we're competing with, with jobs, uh, like McDonald's— and it's no disrespect to any of those jobs, everything is a worthwhile endeavor— but when you have folks coming in to care for your loved ones, you really want to know that they are going to be safe and nothing bad is going to happen to them. And, and you can't do that when you can't afford to pay a living wage to these folks that, that are providing your loved ones these services.

You know, when you were talking about the institutions, I call that prison. And you know, when you're talking about the shortage of, you know, personal assistants or, you know, people that provide care to people with disabilities, it's terrible. It is terrible, the shortage. And the pay. And that's why people say, well, this isn't enough money. I'll go work at McDonald's. I mean, it's unbelievable how that is going. But hopefully we'll be able to do something about that. But right now, on the half hour, it's time for the news. And Perry will be back next week. But sitting in for Perry Jude Radesik is our own Gerald Holomy. Gerald, are you with us?

I am here with you. Thank you for having me call in, Joyce.

Oh, well, of course, being that you're a disability rights leader and manager of talent programs at Bender Consulting Services and leader with Scott of RevUp right here in Pennsylvania. So I know that you are really always aware of what's going on in the news in disability rights. So, Gerald, what news do you have for us today?

Well, Joyce, I wanted to talk about a really important issue today that's a national issue with disability rights, and that's digital accessibility. And, you know, we hear a lot about digital accessibility, just in and out about the disability community, but there really is a major national push going on right now for legislation to really enforce digital accessibility because this is another area like employment where the needle really has not moved for the inclusion of people with disabilities. Today, over 90% of the web is not accessible. People with disabilities. And that's only going to become more problematic as we enter into an age where new technology like virtual reality is being created and augmented reality. If it's not created with people with disabilities in mind and with accessibility in mind, we're not going to be able to be a part of that new wave of technology. So it's really important that we up our game and as a community we stand together, and we support each other and fight to make sure we get equal access to the newest technology, the greatest things that come in the future as people with disabilities. So there's two important pieces of legislation that are happening, two important fights that I wanted to point out. Number one is a big effort that is being fought, really spearheaded by Tony Coelho. This is efforts to recognize that the ADA does cover the virtual environment. There are 52 national disability rights organizations that are signed on to a statement calling right now for regulations to clarify how the ADA covers this. And Tony Coelho, who wrote the ADA, former majority whip in Congress, believes it does. There's a great article where they outline this, where Tony Coelho wrote an op-ed with Newt Gingrich talking about the future of accessibility and the internet. So as you can see, this is a bipartisan issue with immense support that we need to see move forward with huge support from the Biden administration. So there's a lot going with how the ADA will be proving that the digital space is a part of what it is intended to cover. And then in addition to that, there is an amazing bill out of Senator Duckworth's office, the Websites and Software Applications Accessibility Act, which will— if passed, will radically change all technology and the level of definition of what accessibility is for it. And it will create a new set of guidelines that will be similar to the ADA. It is really built to add to the ADA and really built to improve upon the specific digital landscape and really secure our future for people with disabilities that all technology is inclusive for us, not just the web., but any piece of technology that would be developed would be made so that anybody with a disability could utilize it. So a lot of really exciting pieces of efforts out there that you can get involved with. Talk to your senators, ask them to support, learn about. So wanted to call that to everyone's attention because this is something that impacts all of us and really important.

Well, you know what, Gerald? Eve Hill, as you know, is an international disability rights leader for mental health disability rights and presently the chair of the board of the Bazelon Center on Mental Health Law. I remembered when she was an appointee during the Obama administration, I remember hearing her speak, and she said, "You say you want to hire people with disabilities? How can you hire me if I can't get in the door of your employment application?" So, you know, this, this does cut people out. And oh my God, sometimes the application, what you go through, It takes hours to figure this out. So, I'm behind Tony, you know, behind Senator Duckworth. President Biden, I believe, will work on pushing this through. It's a wonderful thing. It's an important thing. So, Gerald, thank you so much for calling in.

Happy to do so. Lead on, Joyce Bender.

Thank you. What do you think about that, Steve?

That's amazing. It's— I think that the lack of the implementation of the ADA is a massive problem, but the virtual access is so necessary in the digital world that we live in, and it needs to be accessible for everybody. It's a way to reduce social isolation. It's a way for people in rural communities to be able to connect with each other. The peer opportunities that it presents are boundless, and everybody deserves to have equal access to that. Here in Michigan, they are going out and installing internet access and fiber optic cable all throughout many of the rural areas here in Michigan. There are still folks that don't have internet service in their location. It's almost necessary to be able to have an engaged life these days, particularly around voting. You know, here in Michigan they changed the law so that you can get an absentee ballot for no reason at all. And that's a game changer for people with disabilities that have a hard time with transportation or live in rural areas and don't have access to public transportation. Our transportation system is scattershot here in Michigan as it is in, in most of this country, uh, until you get into the urban areas and, and you can, you know, jump the bus or, uh, get a ride somewhere through Uber. Um, but this is, this is the right direction for this to go in, and I'm very happy to hear that, that this is going to happen.

Yeah, me too. And we all need to speak up about that. Um, hey, Chan, When I went to your website, I saw these different programs or initiatives that you have. What do you hope of the different programs? What do you want to see grow at your center?

Right. So, one of the things that I think is so critically important is the next generation. That's coming up, right? And so we have some leadership kinds of initiatives where we're trying to work with people of all ages, but in particular youth, to help them number one, understand the issues, right? And number two, learn how to be at the table advocating for themselves and for others in the community. And so for me, probably because I'm 60, I really think a lot about like when I'm tired, who's gonna do this, right? And so, I really hope that we can continue to expand our outreach to that next generation and really sort of guide and help them to become leaders of the future in the disability rights movement.

Yes, that's a— as you know, that was a big issue or mantra for my close friend, the late Judy Heumann. And also for Ted Kennedy Jr. and many others. Because, you know, we often say when there's an issue, what do you do? In the disability rights community, we'll say in D.C., what do you do? Well, what you used to do is call Senator Edward Kennedy. Then when he passed away, you would call Senator Harkin. And then he retired. And people still call him, of course, Antoni Cuello. They now frequently call our own, our own senator right here in Pennsylvania, Senator Bob Casey, who has really embraced the disability community. But there is no Judy Heumann. There is no Marco. You know, so many of these people are gone. And, you know, we need to build that same vibrant leadership at the young age. I agree with you. I agree with you so much. We need to really focus on building that. And that is my wish also. Steve, what I was going to ask you is how the heck do you manage the entire state? I mean, you are not that large, but how do you do that, Steve?

Well, we really do not manage programs or anything. The main focus of the council is the development monitoring and evaluation of our 3-year state plan for independent living. That's really the core function of our council and to do that jointly with the Centers for Independent Living. Our council has a staff of 2, myself and Tracy, who's the director of operations, and as counsel to the staff, we do all the things behind the scenes. We were able, during the pandemic, we were able to get rid of our office, our physical office and Tracy and I both work remotely from home now. We hold quarterly council meetings and we move those around the state to different Centers for Independent Living so our council members can engage in relationship development with the Center for Independent Living staff and their directors and really kind of strengthen that relationship between us. So there's a lot of travel that's involved. Including our statewide outreach where we intentionally go to community events and meet people where they're at and create awareness about independent living, the Centers for Independent Living, and our council. We work— I work a lot with the governor's office of appointments because we are always looking to diversify our council. We want representation from all age groups, all demographics, from rural areas to urban areas. Right now we have a fairly diverse council. We have representation from the Native American tribes on our council, which we have not had in decades. And I'm really proud of the diversity and the diverse voices that have come to that table. It really helps us get down into what we need to be focusing on in our state plan to improve opportunities for people with disabilities.

Yeah, boy, that's great about that Native American, because, you know, Indigenous people are so left out of disability employment, so left out, and that's something I hope that I'm working with someone trying to do something about that. But that's awesome. That is really great, Steve. Well, here we are, 33 years into the Americans with Disabilities Act signing, and as I mentioned earlier, we still have the highest unemployment for people with disabilities of all the groups, and over 70% are not counted in the workforce. Jeanette, I'll start with you. Why do you think this is?

Oh, goodness. Well, you know, most of my adult life has been really spent working closely with people with intellectual and developmental disabilities. And I honestly feel like very often the strengths, gifts, and talents that many people with intellectual and developmental disabilities bring to the table aren't easily seen as matching what employers have historically looked for, right? And so it's about, you know, What's the valued role? What's the valued contribution that that person with a disability is going to make? And lots of employers who don't have personal connection to someone with a disability just don't see it or haven't in the past seen it, right? So I think that that's a piece of it. I think, honestly, the very fact that we continue to, in our country, in many states, have what we call a deviated wage, the ability to pay someone with a disability less than minimum wage, contributes, honestly. To the unemployment of people with disabilities. Because again, systemically we're saying, "Oh, this is a population that has less value, right? You don't have to pay them as much." And so I think that that contributes to it. And then the last thing I think is that systems, big systems move so slowly. And they move way slower than humans want them to or need them to sometimes. So those are kind of my main theories, I would say.

I would like to echo what Jan said. I think that— I know that we still have a huge attitudinal problem throughout society that's pretty pervasive in terms of their views of people with disabilities. And it's not fair to people with disabilities to be pigeonholed and set off to the side. Uh, one other, um, thing that I'd like to talk about is one of our council members, um, has a significant disability and he uses, uh, direct care workers, uh, quite a bit. And he has gone on and gotten his bachelor's degree and he recently got his master's degree in public administration and he cannot find a job that will allow him to continue paying for his PA services. So one of the systemic barriers is the issue with Medicaid and the trap that people get in when they have higher needs than some folks. We sat down and figured out how much he would have to make in order to get off Medicaid just to break even, and it came out to 6 figures. And he could not give up that Medicaid service because of the needs that he has. And I think that that trap that people with significant disabilities get caught in with Medicaid, there needs to be some changes done to that because this gentleman applied to be a program manager for the Administration on Community Living, which is our federal oversight entity for independent living throughout the country. He was offered the job, but when he calculated how much it was going to cost to live in Washington, D.C., they offered him a salary that was a third of what would be necessary in order for him just to maintain the baseline that he's at right now not being employed.

That's a problem.

That's terrible. And you know what? I'm not shocked. Isn't that the worst part? I agree with you. I hear this all the time. I agree with you. And it's so, so terrible. I will say that stigma and built-in systems like that prevent people with disabilities from having gainful employment. And, um, you know, it's so, it's so terrible. It's so terrible. It's so frustrating to me because I've been fighting this fight since 1995. Well, yeah, it is time for What's Going On at Bender, and we have Chris Griffin on the phone. Chris, what's going on at Bender? Chris?

Hi, Joyce. Hi, Steve and Jan. Great show, and I couldn't agree with you more on all the barriers to employment, but I'm here to talk about an absolutely fabulous opportunity for a person with a disability to lead the Disability Rights Maryland, which is the protection advocacy agency in the state of Maryland, and here is a 6— who's also an attorney to lead this organization that provides free legal services to people with disabilities throughout the state of Maryland. They engage in systemic litigation, public policy advocacy, and, you know, really run a gamut of issues that they focus on— criminal justice, prison reform, education. They monitor facilities to, you know, make sure that people are living— when they do have to live in any facility, that they're free from abuse and neglect while we work on getting them out of the facilities. They work on voting, housing, transportation, access to healthcare, right to self-determination. The list goes on and on. And this person would be primary public face of Disability Rights Maryland with the disability community, the media, or any other constituents and organizations they interact with. This person would be working with a very talented staff that are really committed to the well-being of the community. This person would be able to articulate and hopefully nurture a vision for DR, Disability Rights Maryland's future. Again, the qualifications are make sure you have a— excuse me— I'm sorry, a legal degree, a juris doctor degree, and either be already admitted to the Maryland Bar or willing to obtain membership once you got the job. The person really has to, you know, have deep roots in the community, have a passion for the mission of Disability Rights Maryland, a commitment to and experience with advancing the rights of people with disabilities. So really looking for a, a good disability rights leader who's a lawyer and can actually lead this organization into the future. Uh, the salary range is $130,000 to $150,000. $60,000. They offer a great benefits package. Now, you would have to— if you don't live in Maryland or the D.C. area, you'd have to relocate to that area, but a hybrid schedule is possible, but not a totally remote schedule. So, you'd have to be in the area to be able to interact with the community in Maryland because that's what's really important. So, that's one of the things that we have going at Bender. We're also looking for a chief operating officer. For the American Association of People with Disabilities. I'm doing that as a search without Bender. I'm doing that on my own. Joyce serves on the board of AAPD, and— but I want to use this opportunity to advertise that opportunity for another person with a disability who has chief operating officer Experience and skills, bachelor's degree, master's preferable, but really looking more for someone with a disability who has those types of inner operations skills for a nonprofit. So those are a couple of things that I wanted to highlight, and there are good opportunities out there for people with disabilities, and Bender, Joyce Bender, the team at Bender. We all work on a number of opportunities that hopefully we can find someone with a disability to obtain.

So, oh, thank you, Chris. Wow, great opportunities. If you're listening and you know someone, share this podcast. Thanks, Chris and Steve and Jan. Wow, the show was so good. We're at the end of the show. Thank you for being with us. But we end every show with a quote. And today that quote is, "Work gives us dignity," said Congressman Tony Coelho, author of the Americans with Disabilities Act. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Hey, join me next week with Brian Bond as we continue to celebrate Pride Month, the head of PFLAG. Thanks. Talk to you all next week. And in the words of Mary Brocker, remember, Choose joy.

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