Mission of Disability Rights CA:

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. Hello everyone, hope you are having a great day. As you know, this year is the 30th Anniversary of the signing of the Americans with Disabilities Act. And I remind you, because every single show I have a shout out to my good friend Yoshiko Dart, who is the wife of the late Justin Dart, the general of the ADA. Both of them behind so much of what happened getting the ADA signed. And Yoshiko, you're going to hear me, as I have been, continue to give you that shout-out, because you know what? We all have to remember our history. We have to remember our history. That's important. So, so there's my reminder. Then a special shout-out to Richard Roberts, Gang Young, and now Cheryl Paris, in respectively Japan, South Korea, and Tunisia. You know what? These are people from the State Department working in the embassies that are working, trying to help me spread the news about quality of life and employment for people with disabilities. They are just awesome. And so, you know, if you go back On demand to either Spotify, Apple, any source that has podcasting lists. You can hear the show with Richard Roberts from the embassy in Japan with the translators on the show. Oh, it was just so awesome. And you get ready for Tunisia and South Korea coming up next, which, which means I need to thank all of my listeners. Throughout the world, from China to Iceland to, as I just said, South Korea, Japan, Indonesia, Tunisia. I could go on and on. But, you know, some countries like Iceland, there's one person listening. One. And you know what, you one person? That's how it all starts. And I appreciate so much you listening to the show. Our sponsors that, oh my goodness, they have been so wonderful this year. Highmark, who has been the lead sponsor for 3 years, oh, we're going on the 4th year. Peoples, Peoples Natural Gas, Wells Fargo, and the Employment Options. You know what? It's amazing how far this show has come in the past 17 years. But you know what? I thank you and appreciate all of you and everything you're doing to help me spread the word. You all know I'm a woman living with epilepsy and I'm hard of hearing. And I'm not ashamed of my disability. Neither should you be. Now, We have in the world of disability a famous guest today, because you know how someone's famous when you only have to say their first name and everyone knows who you're talking about. And I want to say I met him, you won't believe this, but like '90s, 1996 or 1997 at the President's Committee unemployment of people with disabilities. And I'm so blessed, really, and honored to say he is my friend, uh, when I think of everything he's done and continues to do. So it truly is a pleasure to have as my guest today my friend Andy Imperato, the Executive Director of Disability Rights California, that was CEO of AUCD and AAPD, and worked with Senator Harkin. And what can I say other than he's a great advocate. Andy, thank you for joining us.

Thank you, Joyce. It's great to be with you, and happy birthday.

Oh, thank you very much, Andy. So, Andy, as you just heard, we have listeners around the world, so Would you mind educating everyone about yourself and letting our listeners know how you became involved in the disability community and why you chose to become an advocate?

Sure. Well, Joyce, like you, I acquired my disability and my disability identity as an adult. I was a law student at Stanford Law School, and during my last year of law school, I had my first serious episode of depression and ended up getting diagnosed with bipolar disorder after I graduated. And I was working in legal services, trying to help people qualify for disability benefits, and started to recognize that my kind of new condition was a disability and that I would benefit from being open about my disability and seeing it as a source of strength and identity and connection to a broader community. So I just feel very blessed that happened when I was working at the Disability Law Center in Boston, which is a federally funded protection and advocacy agency that Chris Griffin ended up being the executive director of for many years. And I know Chris is a dear friend. Both of ours. And now, after 26 years in D.C., I'm back in my home state of California working for Disability Rights California, which is similar to the Disability Law Center in Boston. It's a federally funded protection and advocacy agency that serves the entire state of California.

Which means you have a very large staff, I would ex— I would assume. How many people work for the association.

Yeah, so the funding for protection and advocacy agencies is, it flexes with the size of your state. So California is the largest population state in the country, so we have the largest grant. And then my predecessor, Katherine Blakemore, who was the executive director here for 26 years, she did a great job getting additional funding from the state bar and from state government So our budget right now is $35 million. We have 290 staff across 26 offices in California, and we are more than twice the size of Disability Rights Texas, which is the next closest, in terms of large staff and budget, of protection and advocacy agencies. So we are very big. We call ourselves the largest disability rights organization in the country. and we think we are. I mean, with 290 staff, over 100 attorneys, uh, this— our size and our scale are pretty unusual.

Wow. Yes, that, that is a large staff, which means, uh, because of the size you just explained with the budget, you would be the largest disability rights, uh, organization in the United States. And I just want to go back for a moment when you mentioned Chris Griffin. Chris now works with me in executive search, and we're just finishing one assignment and going to another. But I just want to say what, what a thrill and honor it is to have Chris Griffin working with me. So I'm glad you brought that up. So Andy, Disability Rights California, what is Disability Rights California? What is the mission? When did it start? Can you tell me a little bit about it?

Sure. So we started in 1978, so we are over 40 years old, and the mission is really to advocate with and for people with disabilities and their families across the state of California, all types of disabilities, all ages, to help them realize the, the vision of laws like the Americans with Disabilities Act. We promote self-determination, we promote civil rights, we promote justice. We have the ability to litigate, we have the ability to investigate, we do advocacy, policy advocacy, and other kinds of advocacy outside of the courts. And, you know, it's really— I mean, one way to think of it is we're providing free legal services to people with disabilities across California. And we're trying to help enforce laws that were designed for their benefit. But we also get very involved in policy advocacy to try to improve laws or to, you know, use the legislative process to address problems that we see in the client communities that we serve. And because California is such a big state and such a diverse state, you know, there's a lot of need. I mean, there was a lot of need before COVID There's a lot more kind of urgent needs playing out across our state with COVID So I feel like we have a huge mission. We have lots and lots of capacity, but we also have lots and lots of need in the community. California with 40 million people, it's a big state. It's a lot of people to serve, and we're able to serve them in multiple languages. And we're able to serve them from 26 offices across the state. So I feel very blessed that we have the capacity that we do. But I have to say, in this year where there are so many crises that are kind of overlapping, you know, between COVID, the economic downturn, the wildfires that I'm sure you've read about, the, you know, social unrest around racial justice. You know, and just the presidential election and the aftermath of the election. There's just been a lot to attend to in my first year in this job. And I feel very, very lucky and blessed to have an incredibly talented and committed staff.

Wow. Yeah, you really did come into quite the year here, Andy. But I just want to say about that, to any board members that listen now or later, To the show, you are really lucky. It was a coup to get Andy Imperato. I mean that. It was a coup. So lucky for you that you have him. Andy, I have a question for you. Approximately how many cases do you see in a year? And my second question that goes with that is what can you do, like, to get more people to know if they have an issue that they can go to you? In California?

So, so I'll answer the second question first. Anybody that wants to reach out to us, if you go to our website, which is just Disability Rights CA for California, disabilityrightsca.org, you can see how to get help from us, including our 800 number and other ways to request help across different formats. So that's the easiest way to get ahold of us. And the volume of cases that we, you know, clients that we see each year is in the, you know, 8,000 and up range. It's a lot. We do a lot of intakes. Not all of those people get direct legal representation, but they're all people where we open up what we call a service request and then we try to help them. For people that are able to take information from us and advocate successfully for themselves, we try to give them the information that will help them do that. And then for people that need legal representation that fit within our priority areas, we can do everything up to and including, you know, major class action litigation. So an example of the latter, we filed a case in Alameda County here in California this year that's really challenging at a systems level the fact that people with mental illness in that county are being forced into jails and other institutional settings and are not getting the support that they need in the community. So we're challenging the whole way that people with mental illness are supported in Alameda County, and we're co-counseling with disability rights advocates and the Bazelon Center and the Disability Rights Education and Defense Fund which is common for us when we take on big systemic cases like that. We often have partners. One of the interesting things about the Alameda County case, it's the first time in the history of Disability Rights California where Disability Rights California is an organizational plaintiff, which means we are one of the lawyers, but we're also the client. We're one of the clients. So we did that so that we would have standing, and it wouldn't turn on, you know, just a handful of individual clients, but we can represent kind of a whole class of people that are affected by these policies. So it's, it's a new thing for us. I'm excited to be able to do things for the first time in our 42-year history. We have strong support from the board to do it. And, uh, one of the things that it means is I might get deposed as a client. So the, the lawyers on the other side may ask to do a deposition with me, and I would represent Disability Rights California as a client. And my lawyers were saying, are you sure you want to do that? And I said, I would love to be deposed by people who are violating civil rights and explain to them why it's appropriate for us to be advocating for their civil rights.

Well, I just wish more and more people across the state that need help could know about you, if I'm right about this. But Andy, like, let's say there's some residential or, you know, congregate setting for people with disabilities, and, you know, someone comes to you and, and you find out there's abuse going on. Under the law, is it true you can just go without warning them?

Yeah, I mean, one of the powerful things that that every Protection and Advocacy agency has as part of our federal authorizing legislation is we have something called access authority, Joyce. And what that means is we have the ability to go anywhere where there are disabled people to make sure that their rights are not being violated. So an example of a creative use of our access authority, we've gone into immigration detention centers in California and exposed abuses of people with disabilities in those detention centers. And our access authority enabled us to do that in a way where other immigration advocates would not be able to get access to those centers. So we can go into nursing homes, we can go into state hospitals, we can go into detention centers, prisons, jails, you name it. We have access to people with disabilities wherever they are.

And when you go, I mean, aren't these people shocked? Like, don't they try to say, "No, you're not allowed in here," like that detention center? Do you have like something—

Yeah, no, I mean, oftentimes we have to educate people about what is our access authority and why, you know, basically why do they have to let us in. People don't know that without us educating them, but obviously we know how to do that. And if they refuse to let us in, we can go to court to enforce our access.

Well, you know what, I think that is so awesome, you know, that you have that power to do that, because that makes me feel like, you know, we have more protection because it's not, I'm going to call you and then everyone tries to make everything look right. So I, I really think that is awesome. Well, Andy, um, at DRC, Disability Rights California, What are some of the key programs?

Well, you know, we've organized ourselves around different funding streams and different practice groups. So we have an intellectual and developmental disabilities practice group. We have a mental health practice group. We have a Pathways to Work practice group, which is focused on employment, which is something that you and I are both passionate about. We've got a youth practice group. We've got an investigations unit. We've got a group of staff who work in state hospitals with people mostly with mental health disabilities. We have a peer support unit, which is staffed by people with lived experience with mental health disabilities who are working with others in the community. And we have a big state-funded unit called the Office of Clients' Rights Advocacy, which represents people with intellectual and developmental disabilities who are part of our regional center system. So in California, the way lots of people with IDD disabilities get services is through 21 regional centers across the state. And we have a client's rights advocate assigned to each of those regional centers and somebody supporting them. So at least 2 people assigned to each of the regional centers across the state., and we do advocacy to help people get services that they're entitled to from the regional centers and from other systems that the regional centers interact with. So it's robust. There's a lot of different pieces to it. Our federal funding, the protection and advocacy funding, thanks to a lot of hard work by Curt Decker and the folks at the National Disability Rights Network, we have 8 different federal funding streams that are supporting us to do advocacy in different areas. So the bottom line, Joyce, is we serve people with all types of disabilities, all ages, across the state of California.

Yeah, that is so powerful. Well, Andy, the whole world— and obviously it is the whole world— changed early this year with COVID And I know I have been involved with Dr. Reverend William Barber and with his daughter, Sherelle, from Harvard, and they're doing all this work on healthcare disparity for the Black community. But how we got involved with a friend of mine is also to look at the disability community and the intersectionality and what's happening there. So, I wanted to ask you, what, what are you seeing the impact of COVID on the disability community? Because, you know, being that California is the largest state and you have the largest organization in protection and advocacy, you would see it. So, uh, how do you see COVID impacting the disability community, and what is Disability Rights California trying to do to help the situation?

Yeah, well, that's a big question, and there's a lot of, a lot of pieces to the answer to the question. You know, I think fundamentally people with disabilities in California, like other people, have had their lives completely turned upside down by COVID, and the impact across across the disability community is not equal. You know, people who are African American or Latinx or Native American generally have had the worst consequences of COVID both in terms of contracting the disease, dying from the disease, to the extent that people live in congregate settings, including not just nursing homes, but state hospitals, prisons, jails, group homes, developmental centers. They're at the greatest risk of both contracting the disease and dying from the disease, especially in nursing homes. The numbers of people who've died in nursing homes is astronomical, not just in California, but across the country. So one of the things that we've tried to do at Disability Rights California is to help people get out of congregate settings as quickly as possible as a way to save their lives. We actually sued the Department of State Hospitals, which runs large hospitals for people with mental health disabilities, many of whom have been sent there by courts, to say, find the people who are most at risk of dying from COVID and move them out of the congregate setting so that so that their prison sentence doesn't turn into a death sentence. And that case is still pending. We're hoping that we are gonna be able to settle it sometime in the next few weeks. But if we win that case, it could have ramifications across the country. Interestingly, it's been easier to get prisoners released from prison and jail than it has been to get folks with mental health disabilities released from state hospitals. You know, we've got a whole unit that does housing work that's trying to help people avoid getting evicted during the pandemic, which is obviously a huge risk that we're worried about, especially in a state like California where housing is so expensive. We've got a team working with the schools and working with parents to try to be creative and make sure that kids with disabilities are getting a free appropriate public education in a world where most of that education education is being delivered online. And as you know, Joyce Bender, there are lots of kids with lots of different kinds of disabilities who do not naturally do well in an online environment. So trying to balance getting people in-person instruction with making sure that we're paying attention to the public health threat, it's required creative advocacy and it's not It's not a straightforward thing that we've dealt with before. There's so many things that are playing out in the COVID context that we've never had to think about before. So right now I'm on a community advisory committee for the state on vaccine deployment where we're going to be making really hard decisions on what we're recommending to the state about priorities for getting vaccines. So there's just— there's There's a lot happening. I'm very proud of our staff for quickly going in March from going to offices to working from home and trying to keep all of our client services happening in a remote environment. And, you know, in some ways, I feel like this year has been a horrible year for people with disabilities and a horrible year for you and me and our staff. But in some ways it's also been an incredibly inspiring year. I mean, for me, as my first year in this job, to see how creative and hardworking our staff are while they're also trying to homeschool their children— many of my staff have school-aged children— and then some of them are having people die who they love, people in their families, people in their communities. I'm just kind of blown away that We've been able to get through this year, and in many ways, DRC is kind of doing some of the best work we've ever done, but we're doing it in an incredibly challenging environment.

Well, Andy, when you were talking about all of this, it is so complicated. It is so complex, and it really— oh my God, we have so much to do, and I can't imagine how much you have to do. So, Andy, what about people with mental health disabilities? You know, I was thinking about even in my business in employment, it's really impacting people with mental health because of the isolation. How about you? What are you seeing there?

Yeah, no, I mean, I think that It's very hard to predict how people individually are responding to the overlapping crises that are playing out in our state. So we've got the COVID crisis, we've got the economic downturn with lots of people losing their jobs and losing their livelihoods with a lot of uncertainty about when that's going to be over. We've got, you know, the social unrest around racial justice issues in our state. We've got the wildfires, which literally can make it hard to breathe, uh, for, for people that aren't even in the danger zone of actually having to be evacuated. Um, so it's a lot. Um, and, you know, I think our whole state is experiencing trauma this year. And from an employer standpoint, It's important to use trauma-informed management practices. And what I've tried to do as the Executive Director is create a very flexible set of policies where our employees have the flexibility they need to take time off. We gave them additional leave for anything COVID-related, and we defined that very broadly so it could It could be your own mental health to just get through what you're dealing with in the context of COVID You know, we've got a group of our employees who are parents of school-aged children who we're trying to work with them to come up with different ways that we can support them so that they can, you know, be good parents and get their jobs done. Part of it is giving people a lot of flexibility in terms of hours. But, you know, the bottom line is our whole country and the whole world is experiencing trauma connected to COVID. Some of the trauma is unprecedented, like having family members die and you can't come together to celebrate their life. I mean, at least in my lifetime, we've never had that, that problem on a global scale. So I just feel like The whole country is going to have to heal. And, you know, when President Biden talks about, or President-elect Biden talks about building back better, I think mental health is going to have to be a key part of that. You know, what are we doing to help people restore themselves after, you know, multiple traumas played out over, you know, what will end up being at least a full year and potentially more like a year and a half. That's a long time for people to go through this kind of thing. Isolation and this kind of anxiety. And, you know, I just think we're going to need population-based strategies to try to help everybody recover. And it's something that we're all going to be dealing with for many years, I think.

Yeah. Andy, do you have— I mean, I am seeing this because, you know, people are isolated at home. People with mental health issues for companies that have people working working from home, and they, you know, it's not good. I just wondered if you had any advice for employers. Do you have any suggestions for them?

Yeah, I'm interested in your answer to that question too, Joyce, because I know you do a lot of advising employers. What I would say is be kind. Be flexible, be creative, and recognize that it's impossible to predict how any individual is going to react to the situation. So your strongest, you know, most self-reliant, most high-performing employee might be experiencing the greatest level of anxiety in this pandemic, and somebody who that you would have thought would not have navigated this well may surprise you and be, you know, kind of thriving and strong during the pandemic. I just think it's hard to predict. But to me, it starts with, you know, giving grace to your employees, being flexible with them, being understanding with them, and basically trying to meet them where they are so they're able to ask for what they need. That's what we've tried to do at Disability Rights California. I think it's good management. I don't think anything I'm saying is something that a good manager would not do naturally. But I do think— I mean, what I'm finding as an employer is it's just hard to predict which employees are going to be struggling the most. And you want to create an environment where they're comfortable coming to their supervisor or their manager and asking for something that they need in order to cope with everything they're doing.

Yeah, and oh, you are so true. And I tell companies a few things. One is it is absolutely critical to keep in touch with all of your employees because you can have someone isolated. This can be so dangerous. So I tell employers, keep communicating with your staff. Also, have like a social hour. We do things like that. Have a social hour or have what they call morning coffee. And if ever you're not hearing from someone, you know, you've got to get on that right away. And if anyone is not responding and is telling you, you know, they just are having a hard time getting up or whatever, you've got to get in touch with that person. It is absolutely critical. And as Andy said about being kind, of course, you have to be, you have to be understanding. This is bringing more of a spotlight on mental health issues than it ever did before. And this is a time to be flexible and to provide accommodations. But you absolutely cannot treat people like a number. You have to keep in touch with everyone, large or small company. Sadly, and it was horrific for our company, it sent shockwaves through the company, but a former intern who has now been working for like a year and a half, not through me, but through a job he found on his own. And let me just tell you, it doesn't matter that he was an intern a year and a half ago at Bender. You're part of the family. And he was so loved that he was playing like video games and all of this even a week before this happened. But he took his own life, uh, and his family told me one of the problems was COVID-related. And I, you know, I'm so glad that we were one of the— and his parents told me, we can never thank you enough that you were all keeping in touch with him. But, you know, it's not like that with everyone. And it was just so horrible. So, oh, it had a terrible impact on all of us.. But I am telling you right now, you've got to keep in touch with your employees. You've got to keep in touch.

Joyce, I think one of the interesting things that we're learning at Disability Rights California is right when COVID— when the work from home started in March, we started doing all staff Zoom calls. So it's a lot of people. We typically get over 250 on the calls, and we schedule them for 1 hour. We've kind of settled into a pattern now where we do it once a month, but I think we're going to keep doing that after COVID is over because what we're learning from it is there's a lot of value in bringing the entire organization together for an hour once a month. That was not our practice before COVID but I think we're learning that it's making us more cohesive. You know, especially when you're spread out across 26 offices, each office has its own culture. And there just weren't a lot of opportunities for people to come together across the whole organization. We would have a statewide gathering once every 3 years, but obviously that's not enough. So, I think all of us are learning how to use the virtual platform to connect in different ways, and I'm hoping that that's going to continue. And that, you know, kind of it's going to open up more opportunities for employers to communicate in different ways with their workers and hopefully open up more opportunities for workers with disabilities to have more opportunities in the labor force.

Yeah, and I would say the same thing. Oh, Andy, that's such a good point. I would say the same thing for employers. I mean, keeping in touch with your employees is only going to increase morale and employee engagement. So I love that, Andy, that you said that, because when this is over, it should not be, okay, we're not going to bother now, nothing to worry about. And I believe it increases productivity. I think that is an excellent point. But hey, I know— sorry, I'm a couple minutes late, folks, but on the half hour We have our news break that we have been having now for over 2 years. And the reason I started doing this is because I want people with disabilities to have a place to go to know, well, what is happening? What is going on in our, you know, our community? So Andy, I bet, I know you know this person and she has been a fantastic advocate anchor for me. Perry Jude, are you with us?

Hey Joyce, I am, and it's— I've been listening to the conversation and it's good to hear Andy. Hi, uh, hello Andy, from Pennsylvania to California, we send our greetings.

Good to hear your voice and I'm excited to be part of your network now.

We, we love having you in the P&A network.

So what do you have for us today, Perry Jude?

Yeah, well, I want to touch on something that you and Andy were talking about just not that long ago about vaccines. And Andy knows state governments are issuing drafts or in some cases have issued their final COVID-19 vaccine distribution policies. And much like access to ICUs or ventilators and other like other COVID-19 care, people with disabilities and our families have great concerns about who may be first in line for vaccines, how much it will cost, and will it be included on everyone's health insurance plans. And it's absolutely clear right now that there will not be enough vaccines from the current manufacturers to vaccinate every person in the United States. Are vaccines even available yet in the United States? Well, the answer is not yet, but they're coming. And we have a link to the Centers for Disease Control, their frequently asked questions page for coronavirus vaccines. And we know a limited supply is coming. They'll be available this month, and supplies will be increasing in the weeks that follow. So, will the vaccines be free? Well, maybe. They're gonna be purchased with tax dollars and there may be a fee to administer that, but all of us are gonna have to check with our public or private health insurance companies. So, at Advocacy Matters, it's important that disability rights organizations like Disability Rights Pennsylvania, Disability Rights California, people with disabilities, provider associations, and our family members. Check who's on the state vaccination task forces around the country. Why do I say this? Because we are the ones who best represent and inform our states in understanding the needs of people with disabilities. It's also important that people with disabilities are prioritized in the state allocation plans. Many people with disabilities are in the high-risk groups either because of our health conditions or because some of us might live in institutional settings like nursing facilities. So even in group homes, people are at higher risk of infection. So again, we're talking about prioritizing people with disabilities when it comes to vaccine distributions. It's also important that we think about our health and mental health care workers, the direct support care staff, or our peer support staff when it comes to vaccine distribution because as some of these plans are rolling out, they're not including direct support care staff in the definition of healthcare workers. So stay tuned, stay informed with advocacy matters. And we'll talk more about this in the coming weeks, Joyce.

Yes, because I'm wondering, Perry, first of all, talk about underlying conditions. Just remember, you can have epilepsy and you can have comorbidities, whether it's depression or autism or whatever it may be, and that is the way it is with many, many disabilities. Abilities that are not apparent. So my question is, I think like with Pfizer, there are two steps to the vaccine, and that means that's an impact on— when you think of the number of vaccines, you have to remember that for that vaccination to take effect. It's two, not one. And the other thing is, when you're talking about people with disabilities, I think about people, you know, that are in congregate settings, as you said, but also people that need personal care attendants in a rural area, for example. You know, you just have to wonder, how the heck is all this going to happen? And I think it's so important that we do have our eye on this. Andy, what's your opinion about this?

Yeah, absolutely. I mean, as I mentioned, I was appointed to one of our three committees that are making decisions about vaccine deployment in California, and I was delighted that they included not just Disability Rights California, California, but our State Council on Developmental Disabilities, CFILC, the California Foundation for Independent Living Centers, the Disability Rights Education and Defense Fund. So we've got some strong advocacy organizations on the committee, and I think they're listening to us. But the other thing that Perry Jude didn't mention that I just think is important, and it's one of the reasons CALS California created this advisory committee is there are lots of communities that don't trust vaccines. They don't trust medicine. They don't trust doctors. They don't trust pharmaceutical companies. So I feel like one of the most important things for us to do as these vaccines are deployed is convince people of the efficacy of the vaccine and have an environment where people can get good information on like which populations were tested on the vaccine, what are some of the potential side effects, so people can make good decisions. And, you know, I mean, I, I think it's going to be sad if we get into the deployment phase and we still have huge parts of our population that don't trust the vaccine and are not going to take the vaccine.

Yeah, that is so true. Hey, Perry Jude, Joyce Bender, what do we have similar to what Andy's talking about in Pennsylvania? You know, that group he talked about that are on the committee. What's going on here?

Yeah, so Pennsylvania does have a virus task force, and Disability Rights Pennsylvania is on that task force. They had issued some draft guidance, and they had They pulled it back. And so, you know, we're just waiting to see what the state is actually going to do. So, you know, that's where we are at. That's where we're at in Pennsylvania. They had issued it. They had gotten some negative feedback from the home healthcare providers. They pulled it back. The rest of us didn't even have a chance to honestly It was out for such a short period of time, you can't even get the— the link's not even active anymore. So we're waiting for them to revise it and put it back out again for comment.

Well, thank you so much. Joyce Bender and Perry Jude, just quickly, one of the things that happened in California, and I know it happened in other states, and I think including in Pennsylvania, is our state came out early in the pandemic with crisis standards of care guidelines that were supposed to be used to figure out if you have a surge and you don't have enough ICU beds or you don't have enough ventilators, how do you make decisions about who's going to get the limited resource in a crisis? And the first draft from the State of California Department of Public Health was basically encouraging people to discriminate on the basis of disability. Disability and age. And we challenged that, and to their credit, they revoked their initial draft and came up with a new draft that we were part of and that we supported. But I feel like California learned an important lesson there. So when it, when it came time to do the vaccine work, they knew that it was important to have advocates for older Californians and advocates for Californians with disabilities as part of the process. Did you have a similar thing happen in Pennsylvania, Perju?

Oh, absolutely. And we also worked with our advocacy community. We led the advocacy community here and then worked with Health and Human Services at the federal level to make sure that the state had a plan that was nondiscriminatory, and we were very successful. You know, I hope that two influences the vaccine protocols here in Pennsylvania. But again, until we see the final draft, you know, who knows. But I do think that, well, we'll see. Thank you.

You know what, you know what, Perijew, this is so, so important. To all my listeners, what I'm going to start doing, I'm going to have Perijew on a little longer. I'm going to have her give an update every show about what's going on with COVID uh, and this vaccine, then go on to her regular, uh, message for all of us. So that's what we're going to do, Perijude, because I want to keep everyone in the disability community informed, if that's all right with you.

Oh yeah, of course. Sure, Joyce Bender. As you can see, even across the country, right? I mean, this is happening across the country. It impacts everybody's lives. We're in another phase of the virus, and, you know, with numbers skyrocketing, the administration, a new administration is coming in. There will be lots of information to share, and I think it's important. Absolutely, I would agree with you.

Well, thank you so much. Hey, thanks, Perry Jude. Have a good day.

Yeah, take care, Andy. Yeah, you too, Joyce Bender.

You too.

Hey, Andy, I know that— wow, this show is going fast, but that's because it's you. But I have to ask this question before the end of the show. This year was the 30th anniversary of the ADA. I want to know from you what you believe have been some of the greatest accomplishments and where you believe we have been less successful.

You know, fundamentally, Joyce Bender, I think the greatest accomplishment of the ADA now that we're 3 decades in is framing disability issues as civil rights issues and not as issues of, you know, social welfare policy or, you know, poverty or charity. You know, the concept that we as disabled people have a right to participate fully and on an equal basis with everyone else is a transformational concept. Um, we haven't lived up to it consistently in California or really anywhere in the country or anywhere in the world. We all have more work to do. But creating that frame that you have a right, you have a fundamental human right, fundamental civil right as a person with a disability to do what everybody else takes for granted, that is a critically important frame. And the Americans with Disabilities Act was the first law that was as broad-based that established that as a matter of federal law, and it influenced laws all over the world, you know, in the UN Convention on the Rights of People with Disabilities. And I know, Joyce Bender, you travel the world on behalf of State the Department, the whole world is trying to learn from America. But the most important thing they can learn from us is that disability issues at their core are about human rights and civil rights. And, you know, that for me as a person with a disability, learning about the ADA, that idea that disability is a natural part of the human experience and your disability should not prevent you from doing anything you want to do, that was very empowering to me. I think lots of Americans have been empowered by that message.

Yes, I agree with you. Disability rights are civil rights. Andy, how about where you feel we need to go, where we have been less successful?

Yeah, you know, Senator Harkin, my former boss, and like, you know, Tom Harkin and Tony Coelho are kind of always going to be my boss, even if I I'm not getting paid by this, and I'm sure you feel the same, Joyce.

Yes, I do.

But, you know, what Senator Harkin is focused on in his retirement is getting more people with disabilities in the labor force. And I know you're passionate about this, Joyce. Until we show up in the labor force at the same numbers, at the same salaries, with the same benefits as everyone else, we have more work to do.. And we haven't seen any evidence pre-COVID that we were really getting much beyond a third of the working-age population with disabilities in the labor force. And post-COVID, we know that we've been disproportionately knocked out of the labor force by the economic downturn, just like we were in 2008. So if we're going to build back better, the most important thing we can do is get more people with disabilities into the labor force. In jobs that lead to careers with the same wages that everyone else has and the same responsibilities and the same ability to be fired. That's the other thing. If people with disabilities are going to get hired in big numbers, then it also needs to be okay to fire people if they're not performing. So we don't want jobs with no accountability. We want jobs with accountability. And you and I both know, Joyce Bender, that there are millions of people with disabilities who could be thriving in the labor force right now. If they were given an opportunity.

Oh yes, yes I do. And, you know, one of the things I'm worried about, Andy, is what will it be like after, you know, for people with disabilities after COVID, because there's going to be this glut of people that need jobs. So I just hope it will be not a huge gap. What do you think about that?

Well, I think the 2008 economic downturn is something that we all need to learn from and understand. And that, you know, I looked at these numbers closely when I worked for Senator Harkin. We had about a million Americans leave the labor force during the 2008 downturn, and as the rest of the economy recovered Many, many of those folks never came back into the labor force. So we have a similar phenomenon now with COVID If we're disproportionately leaving the labor force, then, you know, as President Biden tries to build back better and as governors try to build back better and employers try to build back better, people with disabilities need to be first in line to come back into jobs. As the economy gets going again and businesses start growing again, we need pipelines of talent so that people with disabilities are affirmatively sought out and, you know, governors are actually setting goals for their states that a certain percentage of all the new hires as we build the economy back needs to be people with disabilities. And we need to actually measure it. And I think in 2008, we had a friendly administration. It was a Democratic, administration under President Obama, brand new president. We had Democrats in charge of the House and the Senate, and, you know, including great champions like Tom Harkin, and nobody was paying attention to the fact that people with disabilities were completely knocked out of the labor force. So when they did their stimulus bill, there was nothing in it to try to bring people with disabilities back into the labor force. So let's learn from that and let's build build back better in a way that truly includes people with disabilities.

Well, I agree 100%. And Andy, thank you so much for being with us today. And if you're listening right now thinking other people should hear this, which you're right, make sure you share with them. Spotify, Apple, BenderConsult.com, and they can hear the show. And we end every show with quote, and I could not wait for this, could not wait, "It's easier to legislate and it's easier," excuse me, "it's easier to legislate than it is to see change." And I think what Andy's talking about, and I think I said that wrong, let's get it right again, it's easier to see changes around bricks and mortar than it is to see legislation. That's it. Andy, that is your quote. How do you like that?

Yeah, I think the quote was that it's harder to change attitudes with legislation than it is to change bricks and mortar. And if we're going to have success in employment, that's what we have to do. We have to change the attitudes of employers, coworkers, and employees with disabilities about what's possible. And that's not something we can make happen through legislation. We can make it happen with businesses talking to other businesses and people like you, Joyce, giving them good information.

Well, see, we have to have Andy on here to get his quote right. And thank you very— thank you very much, Andy. And to everyone on the show, everyone listening to the show, thank you so much. I'll look Look forward to next week with Miss Judy Heumann. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Talk to you then.

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