On this episode of the ACB Advocacy Update, Claire and Clark discuss an important resource that can be used by all ACB members and people with disabilities. With special guests from Cyrus Huncharek, National Disability Rights Network, and Thomas Crishon, Indiana Disability Rights, we learn about the federally mandated protection and advocacy (P&A) services available to people with disabilities. The P&A system offers free disability-related legal and advocacy services to residents of their region. To find out more about the P&A in your area, visit: www.ndrn.org.
Transcript:
Male Voice:
You're listening to the ACB Advocacy Update.
Claire Stanley:
Hey everybody, welcome back to another episode of ACB Advocacy Update. I almost said "Good morning," or "Good afternoon," but I realized that doesn't work on a podcast. So hello everybody, and welcome to ACB Advocacy Update. This is Claire Stanley, the advocacy and outreach specialist here at the American Council of the Blind. And my lovely co-host-
Clark Rachfal:
Claire, podcasts are all times and all locations.
Claire Stanley:
Ooh they're omniscient and all powerful?
Clark Rachfal:
All would've been correct. Maybe semi-phenomenal, merely cosmic, podcasts.
Claire Stanley:
Ooh. I like it.
Clark Rachfal:
This is Clark Rachfal, ACB's Director of Advocacy and Governmental Affairs. Thank you to everyone listening on ACB radio, as well as those downloading, subscribing, listening, reviewing and liking via your favorite podcast player. And for this podcast, and only one more for the rest of the year, thank you to Sprint T-Mobile for underwriting our podcast for 2020.
Claire Stanley:
That's right. So Clark, what are we going to talk about today?
Clark Rachfal:
Well today we decided to have a conversation about a partner of ACB and of our affiliates, and it really-
Claire Stanley:
I thought you were going to say a partner in crime, but I guess they're kind of a partner in crime.
Clark Rachfal:
Well, they're our partner when crimes against disability rights have been committed.
Claire Stanley:
Nice. Nice.
Clark Rachfal:
Yes. So we are getting to know the National Disability Rights Network, or NDRN, as well as the protection and advocacy organizations throughout the country.
Claire Stanley:
That's right. Yup. So just as a quick backstory to that, many of you who have called over the years and so on, who might be experiencing any type of legal issue pertaining to your disability, or access issues for services that you have a right to, we often will encourage you to contact your local P&A office. They have such great knowledge, wisdom, resources, experience, and so we often will give you their email address or phone number. And so we thought, "Why not go to the source directly and talk to NDRN, the national office, as well as the local based P&A offices?" So that's what spurred us on to do this episode.
Clark Rachfal:
And as folks remember, earlier this fall we had a great conversation on digital inclusion, and the legal framework that's currently in place throughout the United States when it comes to digital inclusion and online accessibility, and that conversation was with Rachel Weisberg, and Rachel works at Equipped for Equality, which is the protection and advocacy organization in the state of Illinois.
Claire Stanley:
That's right. Yup. I always thought Equipped for Equality had one of the coolest names for their P&A office.
Clark Rachfal:
Alliteration is always cool.
Claire Stanley:
Alliteration is a pretty cool thing. I agree. Cool. Well we have two guests today that we're going to talk to: Cyrus and Tom. I'm not going to attempt to say either of their last names, because I will get them wrong. But we'll have Cyrus and then we'll have Tom. So if you guys hold on for a second, we'll be right back with our two awesome guests.
Claire Stanley:
Great. So we are back everybody, and we have our first guest with us. And I'm really excited to invite Cyrus to come and talk with us. Cyrus, can you introduce us. I apologize, I'm going to say your name wrong so I'm not going to embarrass myself.
Cyrus Huncharek:
Yeah, no. No worries. You are not the first nor will you be the last person to butcher that. So yeah, happy to introduce myself. But before I do that, let me just first off say thanks for having me on today Claire. And I just want to mention that NDRN values the working relationship that we have with the American Council of the Blind. We look forward to our continued collaboration. My name is Cyrus Huncharek, my preferred pronouns are he/him, and I am a senior public policy analyst at the National Disability Rights Network, which we refer to as NDRN for short. And so what that means in practice is that I work on the public policy team where I cover several federal policy areas and work to advance our federal policy priorities with Congress and the administration.
Claire Stanley:
Great.
Clark Rachfal:
And Cyrus, what is NDRN?
Cyrus Huncharek:
Yeah, great question. Happy to explain our organization. So, at a base level, NDRN is the nonprofit membership organization for the federally mandated protection and advocacy systems, which we refer to as the P&As, and the client assistance programs, which we refer to as the CAPs. And so both of those entities serve individuals with disabilities. And we're cross-disability so we serve anyone with a disability. So like I said, basically NDRN serves the membership association for those two entities, and we provide a variety of services that support the P&A agencies and the CAP agencies.
Claire Stanley:
So, Cyrus, to my understanding the P&As oversee... I don't know if the word grant is the right word, but over nine projects or grants. You obviously don't need to list all nine of them. This isn't a test. But can you tell us a couple of the different ones you guys work on?
Cyrus Huncharek:
Yeah, yeah. So we oversee, like you said Claire, nine congressionally mandated programs, all in statute. And a couple of the ones that folks might be most familiar with are: The protection and advocacy for individuals with developmental disabilities, or the PAD programs that serves folks with DD. We also oversee the protection and advocacy for individuals with mental illness, or the PAMI programs. Those serve people with mental illness. And we also have the protection and advocacy for individual rights, or the PAIR program. Which I like to think about as a catch-all. And this program lives at the Department of Education, so typically if you don't fit squarely into any of the other programs that we oversee, you could be served through PAIR.
Cyrus Huncharek:
And most of our programs are discretionary programs, so they're subject to annual appropriations, though we have a couple mandatory programs as well, and social security. So on that theme, we also oversee the Rep Payee Program. So Rep Payee is someone who manages social security benefits on behalf of a beneficiary. So we also oversee that program. So, I think in summary you can tell that we have a pretty broad range of services and have our hands in a bunch of different pots.
Clark Rachfal:
And Cyrus, what are the P&As or protection and advocacy organizations?
Cyrus Huncharek:
So, yeah. They are individual agencies that are primarily made up of attorneys and other advocates. We've got one in actually every state. We also have one in every US territory, so that covers American Samoa, Guam, Northern Mariana Islands, the US Virgin Islands, Puerto Rico, DC, though not a territory but not a state. And then we also have a P&A in the Four Corners region of the Southwest, which actually serves a couple of our native nations down there. So primarily the Hopi, Navajo and San Juan Southern Paiute nations. So in total, we have actually 57 P&As, so a unique number, I think. And I think what I alluded to earlier, I think what really distinguishes us is each individual P&A gets funding under one of our nine programs, or all of our nine programs, and again they're cross-disability.
Cyrus Huncharek:
So the beauty here is no matter where you live or work, or regardless of your disability, you could potentially be served by a P&A if you feel as though your rights under applicable federal civil rights law are violated. So you can just call up a P&A, there's an intake and they can start working on your case.
Claire Stanley:
The P&As are actually near and dear to my heart because my first internship in law school was at the California P&A in Sacramento, and then my first fellowship out of law school was at Disability Rights DC, the DC P&A. So yeah, some good memories there.
Cyrus Huncharek:
You were trained well.
Claire Stanley:
That's right.
Clark Rachfal:
And Cyrus, why are the P&As necessary? You said they were federally mandated.
Cyrus Huncharek:
Yeah, yeah. Exactly. I think I keep saying the word unique. I mean I think NDRN is unique, and I think the P&As are unique just by the nature of our work. And we also had a unique inception. So the catalyst for the P&A network was actually back in the 70s, Geraldo Rivera, who's a pretty famous journalist now, actually did an expose for the ABC News affiliate in New York City in 1972. And what he actually did was he exposed really horrific, which I think is an understatement, abuse and neglect and lack of services and supports at Willowbrook, which was a state institution for people with intellectual and other disabilities on Staten Island. And so this broadcast, when it came out, really prompted Congress to take action.
Cyrus Huncharek:
I think what they basically thought was like, "This is really unacceptable, folks are being institutionalized. And not only are they being institutionalized but when they're institutionalized they're subject to horrific abuse and neglect." And so this prompted Congress to create the first P&A program, which was PAD which I alluded to earlier. And the vehicle for that was the renewal of the Developmental Disabilities Assistance, and Bill of Rights Act of the DD Act. And so again, that program was meant to allow the P&As to provide oversight for folks with DD, particularly in institutions. But over the years, though, as we've moved towards a deinstitutionalization paradigm, and really mandate if you look at various laws and court cases that have taken place since then, the P&A statutes have been expanded with the addition of additional programs.
Cyrus Huncharek:
So now that P&As devote a considerable amount of time and resources to ensuring full access to inclusive educational programs, financial entitlements, healthcare, accessible housing, transportation, productive employment opportunities. But also, we continue to serve a core function, which is the prevention of abuse and neglect. But like I said, as deinstitutionalization has been the new paradigm through which we look at these issues, the function of the P&As has moved towards doing a lot of work to ensure inclusivity and community integration.
Claire Stanley:
So, you talked a little bit about your role as the senior public policy analyst. Can you tell us what a day in the life Cyrus looks like at NDRN? What are some of the projects you work on, the topics you work on? What's your portfolio, so to speak?
Cyrus Huncharek:
Yeah. Well what I'll say, a day in the life is busy.
Claire Stanley:
I'm sure.
Cyrus Huncharek:
Which is good. There is really no lack of work to do, and I think what I will say is that it is an honor, truly, I think is a good way to characterize it. It's an honor to do this work, and I wake up everyday really privileged to work on these issues, which are near and dear to my heart. So let me answer this at two levels. So I provide two functions to the P&As in my role at NDRN. So since we're a membership organization, I would think of us as offering services in two buckets. So most relevant to me is: I provide the public policy services to the P&As, which is a membership service. So that largely consists of me trying to get increased funding to the P&As through the annual appropriations process. Like I said, seven of our nine programs are subject to the annual appropriations process. So there's that.
Cyrus Huncharek:
And then the other bucket, which I'm less involved with, is the technical assistance bucket. So NDRN is actually the technical assistance provider for the P&As. So we are almost always doing some sort of training at any day for the P&As on a variety of topics, given how broad our work is. So that's where I fit in institutionally, in terms of services that we provide the P&As. More specifically, the policy areas that I personally work on, which again is more representing our policy proprieties to Congress and the administration while also trying to get increased funding for the P&As. But I work on education, particularly special education. I work on criminal and juvenile justice. I work on police reform, which has really ramped up after the tragic murders over the summer, and how those highlighted the epidemic of police violence against people of color in this country. So we're doing a lot of work on police reform and thinking about alternate responses to non-emergency situations that maybe don't involve the policy. So we're doing that.
Cyrus Huncharek:
I work on housing. I work on transportation. I work on social security. I do a lot of work on the supplemental nutrition assistance program, SNAP or formerly known as food stamps. And I always work on the child nutrition program, so school meals. I work on immigration. And then I'm also, and Claire I know you're familiar with this, I'm also a co-chair of the Consortium for Citizens with Disabilities, financial security and poverty task force. We call that CCD, which is basically a coalition of disability organizations. And in that role, I work on ensuring that folks with disabilities have access to mainstream financial services, so I do some banking stuff. And then we also cover the poverty programs as well. And Claire, I know you co-chair the transportation task force, so we work collaboratively through that space as well.
Claire Stanley:
Yeah. ACB is a proud member of CCD, so if our listeners who are members ever want to know about CCD that's something we really enjoy participating in. Great. Well it sounds like you definitely have your hands in many, many pots Cyrus.
Cyrus Huncharek:
Yes. Yes.
Claire Stanley:
Just going back real quick to the nine different programs. I'm curious, you said seven are dependent on appropriations. What are the two that are constant?
Cyrus Huncharek:
Yeah, those would be the social security programs. So PAMs, which does a lot of work with Ticket to Work. That one's not subject to annual appropriations. It's mandatorily funded. And then the Rep Payee program, where again we oversee rep payees who... Or we monitor, provide oversight to that program. Again, Rep Payee program is folks who manage social security benefits for beneficiaries. So I would think of it as, any social security program that we're overseeing is not subject to the annual appropriations process.
Claire Stanley:
That makes sense, and I'm glad to hear that.
Clark Rachfal:
And Cyrus, because it is 2020 and we can't escape discussing the COVID-19 pandemic, how has the pandemic provided opportunities and challenges to the policy and advocacy work of NDRN?
Cyrus Huncharek:
Yeah, that is a great question. And before I even answer that, let me first say that this has been a very, very difficult time and I've been, again, honored to work to alleviate some of that pain, especially the disproportionate impact it's been having on a lot of the communities that we serve. But I would say it's prevented more challenges than opportunities. I think the one that comes to mind first, which I did not, to be candid, work on a ton since I don't cover health. But we worked on the medical rationing issue. So basically for folks that don't know, many states had these medical rationing plans, which essentially say that if hospitals get to capacity, they can start prioritizing care based on quality of life as opposed to individual medical assessments.
Cyrus Huncharek:
And so how that's relevant to people with disabilities is that quality of life assessments are subjective. So what might be a good quality of life for one person, may be perceived differently by another person. So many of the P&As, I think actually almost all of them, filed at a minimum a complaint trying to get these medical rationing plans basically tweaked or seriously amended. And we were largely successful in that. By successful I mean, to my knowledge there has not been a single case of medical rationing during the pandemic, which I would say that the P&As and NDRN played a huge role in that, including a complaint filed with HHS OCR. And so there's more information on our website about that if you're curious. So there's that.
Cyrus Huncharek:
I think, again I mean COVID-19 has just touched really every policy area, so maybe I'll just highlight a few of them. We had heard from the P&A network that folks who were on SNAP, again food stamps, were having some apprehension about going to the grocery store to purchase groceries for fear that they could be more susceptible to infection and potential death. And they noticed that they couldn't use their SNAP benefits to order groceries online, like many folks who are not on SNAP can do. Like I can order my groceries online so I don't have to go to the grocery store. So there's a little program at USDA called the SNAP Online Purchasing Pilot Program. And basically this program allows you to use your SNAP benefits online to order groceries.
Cyrus Huncharek:
At the beginning of the pandemic there was only a handful of states that had this program, and we went to USDA and made a statutory argument saying, "Look the statute really says that this program should be expanded practically nationwide. We think this is a perfect time to really get going on this." I mean, USDA time and time again under this administration rejected that argument, and it was a real battle. And so I was not willing to accept that, and nor were other folks I was working with on this issue. And so what we did was we did a nationwide, almost letter-writing campaign where we really urged the individual P&As and other organizations and state affiliates to write to their state officials saying, "Please urge your state officials to apply for this program."
Cyrus Huncharek:
Basically what USDA had said was, "Oh well the states are the ones that need to initiate the process." Again, we had a very interpretation of the statute. We thought it could've been done practically, but that didn't resonate with them. And so I'm happy to say that now the program has been expanded almost nationwide. I think, don't quote me, but I think all but three states now have it. And I would really say that the P&As and many of our ally organizations played a huge role in getting that program expanded. So now people can order their groceries if they're on SNAP with peace of mind that they don't have to put their lives at risk by going to the grocery store. So I think that was a big victory.
Cyrus Huncharek:
I think some places where we're facing some difficulty, the transportation space, particularly with the airlines. So we have really been pushing for a federal mask mandate, which seems counterintuitive right? But the reason is that currently the federal government has issued guidance to the airlines, which has basically said that, "We recommend that you implement a mask mandate for your passengers and you should be making exemptions for people with disabilities or people with medical conditions who cannot wear a mask, and you should be doing that in accordance with the Air Carrier Access Act," which is basically the ADA for the airlines. Again, this is guidance so it's not binding.
Cyrus Huncharek:
So what have the airlines done? Well the airlines have not been following the guidance, and my evidence for that is the fact that many of them have instituted what are called "No mask no fly" policies, which means that if you are not wearing a mask, we will not provide you travel no matter what. There is no individualized assessment about your disability our your medical condition that may not permit you to wear a mask. And so we think this is a huge violation of the Air Carrier Access Act, and a big problem. And so we actually had a situation in Alaska brought to our attention by the Alaskan P&A where an individual with a complex medical condition needed to travel for a follow-up for an organ transplant, and could not wear a mask because of their disability, and the airline refused to provide them travel. Again, we think in violation of the Air Carrier Access Act.
Cyrus Huncharek:
So we're looking for a federal mask mandate that also says that there should be exemptions made for folks with disabilities and other medical conditions in accordance with applicable federal civil rights law, more specifically the Air Carrier Access Act. And if I could just say, I want to be really clear here. There have been these allegations that NDRN is pushing for a blanket exemption, or that we're supporting these DOJ ADA mask exemption mask cards, which is misinformation and totally bogus. I mean these cards are totally fraudulent. So I just want to be very clear that we are not pushing for a blanket exemption. What we're pushing for is individualized assessments in accordance of the Air Carrier Access Act. And so if an individualized assessment is made and their determination is that the individual should not be provided an exemption, then that's perfectly fine with us. But currently that's not really being done.
Claire Stanley:
Great. Well thank you Cyrus. I know I have learned a lot today about what NDRN is doing, and the different policies and what COVID has done. So thank you so much for all of the work that the public policy team at NDRN is doing, and just the greater team at NDRN is doing. And I think you really helped our listeners understand what you guys are all about. So thank you again.
Cyrus Huncharek:
Thank you.
Claire Stanley:
And for our listeners, just hold on for a second and we'll be back with our next guest who works at one of the state-specific P&A offices.
Speaker 6:
Introducing Sunday Edition with Anthony. A weekly magazine show featuring the movers and shakers of our beloved organization, topic and news that affect us all, some great roundtable discussions, and of course a lot of fun. So join me every Sunday at 1:00 PM on ACB Radio Mainstream for Sunday Edition.
Cindy van Winkle:
This is Cindy van Winkle, membership services coordinator. If you are not already a part of the ACB family, you could join us by going to acb.org, or call us at 612-332-3242, and we'll help you join our community.
Claire Stanley:
Great. Well we are back for the second guest we have on our show today. I'm really excited. We just spoke with Cyrus, who works at the NDRN, at the national level. But we're really fortunate to have someone who works in one of the state P&As to give us, well, the boots on the ground perspective of what it is like to work at one of the state P&A offices. So I'm going to let you introduce yourself because I always feel like people are better than that than I am. So Tom, do you want to introduce yourself and tell our listeners what state you're from?
Thomas Crishon:
Sure Claire. Thank you. My name is Tom Crishon, I'm the legal director for Indiana Disability Rights, which is the protection and advocacy system for the state of Indiana.
Claire Stanley:
Great. Perfect. So we learned a bit about what NDRN does, and then what the different programs are that trickle down. Can you tell us a little bit about what... You said already what your title was, but what work do you specifically do? What does day in the life of Tom look like at the P&A?
Thomas Crishon:
Sure. It's varied, I can tell you that.
Claire Stanley:
I'm sure.
Thomas Crishon:
So as legal director, I primarily direct and supervise all of our litigation and policy activities. So I oversee our investigations coordinator, our advocacy supervisor, our intake staff, and also our legal staff, which is broken up and oversees five particular practice groups or teams. So as an organization, we're split into these practice areas, and focus on those. Those being the first one is: The abuse, neglect and discharge team, which works to do investigations of allegations of abuse and neglect, advocacy and discharge planning and delay discharge. We have a civil rights team, which is a bit of a catch-all, but includes fair housing work, Americans with Disabilities Act Title II and Title III allegations, some constitutional work.
Thomas Crishon:
Our third team is education and employment. They work on special education matters, Title I ADA employment discrimination cases, vocational rehabilitation of advocacy and appeals. We have a healthcare team, which does healthcare-related discrimination and also Medicaid waiver denials and appeals. And then our final team is self-determination. So guardianship defense, guardianship termination, support of decision making agreements and advocacy. So as a whole, we work on all of those disability rights related matters. Personally, in my supervisory role, I'm involved in it all, though I do have a particular interest in ADA and fair housing. So I have the luxury of picking and choosing my level of involvement in any given case. So my day-to-day involves advising and helping with those individuals and my staff on those different matters, though I do have my own case load of particular cases that I'm currently working on.
Clark Rachfal:
And Tom, talk with us a little bit more about that day-to-day. So in Indiana, if a resident or a consumer organization was to contact IDR, the P&A, on an issue related to a perceived violation of their rights under the ADA, or the Fair Housing Act and housing discrimination, what would that process look like? And what would a resident or a consumer organization, what would their interactions be like with the P&A?
Thomas Crishon:
Yeah, so the nice thing about P&As is we have a spectrum of services that we can offer. That first contact, that individual having and experiencing an issue, would contact the agency and we have some dedicated intake and referral staff who would assist them, and if referrals are necessary, provide referrals. If it's something that we can handle, then they obtain the necessary information. We have a weekly case review committee meeting that reviews those intakes and determines if it's something that we can move forward and offer advocacy representation for. So we do that weekly. We open new cases, assign them to pertinent attorneys and advocates, and then we move forward. Our day-to-day involvement can be anywhere from fact finding a situation, determining if there are rights violations, informal advocacy with the individual involved.
Thomas Crishon:
It can lead all the way up to federal litigation and class action lawsuits if necessary. So day-to-day, it really depends on the situation. Disability rights is a very broad area of practice, so my day-to-day, and for instance the federal litigation that I'm currently involved with varies from I'm involved with monitoring a Department of Corrections lawsuit and settlement that involved offenders with seriously mental illness being housed in segregation, all the way to an accessible website and effective communication case against our family and social services administration, to voting cases, to an arrest and a jailing of an individual with a development disability, and mental health diagnosis where we don't think appropriate reasonable accommodations were provided. So it's very varied and there's not a typical day-to-day, but that's the process. If somebody were to contact us, we'd assess, see what services we can provide, and depending on how the situation has developed, where we go from there.
Claire Stanley:
So Tom, you talked about quite a few different topic areas that are really interesting. It must keep you very engaged going from one topic to the other. Do you guys tend to see any particular trends in 2020 or before that are going on in Indiana? I know in the greater disability rights community we see certain trends that bleed through. COVID has definitely impacted life. Are there any trends that are specific to Indiana that you guys have been dealing with?
Thomas Crishon:
Yeah, I think always, every year and especially 2020, I think there's the standard problems that we see and try to combat. That being accessible and reliable transportation, access to healthcare and education and employment, affordable and accessible housing. I mean those are always there, but always worsened with a pandemic obviously. Right now, a really big area in Indiana is a staffing shortage. and it's a shortage of staff that can work for and on behalf of people with disabilities. So direct care staff, nursing staff working in congregate settings. It was bad before the COVID-19 pandemic, and we think the pandemic's exacerbated it a little bit. But it's especially important situation because it can create a situation where an individual who does not have adequate staffing, say for community-based setting, that they risk being institutionalized.
Thomas Crishon:
And we've seen how COVID can impact congregate settings more than anywhere. So that staffing shortage can unfortunately result in more people being institutionalized, where they could absolutely live and thrive in the community-based setting. So that's a big issue that we're trying to combat now. Unfortunately in Indiana we had a service provider in northern Indiana say, "Hey we can no longer staff these 40 individuals anymore." And there was a rush to find appropriate settings for those 40 individuals. And we're concerned that may happen more, given the pandemic.
Clark Rachfal:
What relationship does IDR have with other P&As? So Cyrus was telling us that there are 57 P&As in total. Is there coordination and communication efforts that happen at the P&A level when working through these issue areas?
Thomas Crishon:
Oh absolutely. So NDRN, the National Disability Rights Network, I think does a great job of coordinating those efforts. Depending on the P&A, IDR has good relationships obviously with our neighboring P&As, but there's no reason to reinvent the wheel. We're all dealing with very similar situations. Obviously state law and state administrations may impact and change the situations slightly, but if another P&A has dealt with a specific situation, then it's good to get their take on what worked, what hasn't worked, how they're combating it. So from my standpoint, for instance, there's a regular legal directors call where we can hop on the phone with other legal directors in other P&As. I know there's a CEO call where the executive directors can do the same. There's a number of Listservs that individuals can bounce ideas of off each other.
Thomas Crishon:
And I think most P&As are pretty receptive to you just picking on the phone and calling them, or emailing them and just saying, "Hey. We see you're dealing with this or working in this area. We're seeing similar situations here. What have you done? And what's worked and what hasn't worked?" So I think there's a really good relationship amongst the P&As nationally, and that helps. I think that helps us provide the best service we can for our constituents.
Clark Rachfal:
That's great. That's similar to, Claire, the conversations that our affiliates and affiliates presidents have when they're trying to work through either advocacy issues or affiliate management issues. So it seems like you all have a pretty similar structure, and the same level of coordination and communication.
Thomas Crishon:
Yeah. I don't think it benefits anybody to just live in your own little island. We all work under similar funds and similar grants. We're all providing similar services. Obviously some of these state-by-state issues may vary, but it's always important to reach out and see what those other agencies and what other organizations are doing. And that really expands beyond the P&As though. There are such great national and state disability advocacy organizations, obviously like the ACB, and it's good to reach out to those organizations as well to see what they're working on and if we can help each other that way.
Claire Stanley:
So Tom, I always love to ask people in the disability rights community, the legal world or the advocacy world, how they got into this area, because it's kind of an interesting niche area. So do you mind if I ask what got you interested in this area?
Thomas Crishon:
Yeah absolutely. So it's been a little bit of a roundabout way, but I've long had an interest in employee rights and employment discrimination. So during law school I had the option of completing a specialized program for labor and employment law, and through that work, while in law school I worked for the civil rights section of the state's attorney general. I had an opportunity to work on some employment discrimination cases there, be exposed to some fair housing situations. So after graduating from law school, having that experience in that interest area, I think the P&A system was just a perfect fit. And they were hiring for a staff attorney. Fortunately, they gave it to me. So I had an opportunity to expand and work in those particular areas, expand my interest in working for and behalf of people with disabilities. And I think it was a great decision back then.
Claire Stanley:
That's great.
Clark Rachfal:
And Tom, you mentioned the coordination, not only within the P&A network, but also with the cross disability community. You all had a press release last week on the international day of people with disabilities, talking about work with the cross disability community. Can you tell us about that announcement?
Thomas Crishon:
Sure. So we filed a lawsuit. The Indiana Disability Rights is working with the Disability Rights Advocates Organization to represent three Hoosier voters with vision disabilities, and two disability advocacy groups, one being our group which is the Indiana Protection and Advocacy Services Commission, and then the American Council of the Blind of Indiana, which is obviously one of your local affiliates. We filed a federal lawsuit against the Indiana Election Commission, and the state's secretary of state, alleging they're maintaining a voting system that remains inaccessible to people with disabilities. Specifically, we're alleging that they are not providing necessary accommodations that would allow people with disabilities equal access to the voting process, and also not allowing individual voters independent and private voting access. So generally, when a state offers a program, here a voting program, they need to ensure that everyone has equal access, including people with disabilities. And we're alleging that they're not doing that here with regard to the absentee vote by mail program in Indiana.
Claire Stanley:
I think this particular case is really important and exciting because it's taking place after the 2020 general election. I think there was a lot of work done before the election, which was so important, don't get me wrong. But I think this is a great example of the fact that we're going to keep fighting. Just because the 2020 general election is over, that does not mean these issues are gone. So I think it's really impressive and exciting to see the work you guys are doing, that we're going to keep fighting, because there's another election next year and the year after, and on and on and on. So it's pretty exciting to see that the fighting is not stopping, that we're going to continue to push.
Thomas Crishon:
Absolutely. And while I would say that the COVID-19 pandemic certainly maybe exacerbated this issue, this is not a pandemic issue. This is a federal civil rights access to the voting process issue. We all know how important voting is. It's the bedrock of democracy, right? And if people don't have equal access to that process, that's an important right that's being infringed upon. So you're absolutely right. I think we saw a lot of pre-election voting lawsuits. In fact, locally we were involved with an amicus brief in a lawsuit that was trying to expand the vote by mail to everyone. Talking about some collaborations, we joined with a few other local disability rights organizations to represent the interests and the viewpoints of both voters with disabilities along with those individuals who live with and work with voters with disabilities, and the risk they were encountering by requiring in-person voting. So that was a pre-election matter.
Thomas Crishon:
But now we're focused on the post-election, having heard from experiences and the barriers that this system has placed on individual voters, we can really highlight those and advocate for change, as you mentioned Claire, to ensure that the next election is accessible to everybody, and everybody has that right.
Clark Rachfal:
And Tom, as Claire mentioned, there have been other cases filed this year, certainly ACB has been involved with cases in several other states along with Disability Rights Advocates, who's co-counsel in this case, and P&As from other states as well. Have those proceedings, do those make you optimistic for what you are hoping to accomplish on behalf of the Hoosiers and Voters with Disabilities in Indiana.
Thomas Crishon:
Very much so. Yeah so I think that the particularly the cases brought by Disability Rights Advocates and some of the other P&As and some other national organizations, specifically with regard to accessible absentee system. They've seen victories in other states. We have similarly inaccessible systems here, although I would venture to say that Indiana probably has one of the most restrictive systems in the country. But they've seen successes, and I think that we will see, hopefully, some success here as well. Stepping back from a lot of the voting litigation that was surrounded around COVID and the health risks about going in person and voting, this lawsuit, it happens every election. It's not pandemic-related. Certainly, yes, in Indiana we saw I think three times the amount of people vote absentee in this general election than in 2016. Yes. Absolutely. That puts a brighter light on the issue.
Thomas Crishon:
However, Indiana, just for a little background, Indiana has a vote by mail program, absentee program, but they only allow 13 specific categories to participate in that program. Voters with disabilities is one of those categories. So voters with disabilities already should be able to participate in the absentee ballot system, but when they offer a standard sized print based absentee voting system, they are having and maintaining a program that is simply inaccessible to many people. And to take a step further, the state law states that if you are unable to independent complete your own absentee ballot, you have to have a traveling board come to your board and complete the ballot for you. So it's forcing people, especially with vision disabilities, to forfeit their right to that private independent ballot. So I mentioned, this is one of the most restrictive absentee systems in the country. So seeing those successes in the other states by DRA and the other P&As, with their inaccessible systems, we think Indiana's maintaining an even more restrictive and more inaccessible system, and we're optimistic seeing those federal decision that hopefully be some good decisions in this lawsuit.
Claire Stanley:
So taking a step back to the very beginning, Tom, and it's been so helpful to talk to somebody from a state P&A because I must admit that when people call our office as the advocacy and outreach specialist, I am continuously referring people to their state P&As because you guys do phenomenal work and you're a great resource. So can you just briefly talk about what services or issues people can call you guys about, how you guys can help, how people can get ahold of you. Obviously you're for those who are in Indiana, but maybe some ideas for other states. If people call, what can you guys offer and how can they get ahold of you guys?
Thomas Crishon:
Yeah absolutely. So just a little background, overview. P&As are the only legally based advocacy organization that Congress established to protect the rights of individuals with disabilities. So if it's a disability rights related issue, then P&As will be able to provide some advocacy. There are a number of grants that we all work under. The particular programs may vary state to state, but generally speaking we all have most of the same grants. A lot of those grants are person-specific, and a lot of them are subject or issue specific. So for instance, we have a protection advocacy for persons with developmental disabilities program. So if an individual with development disability is encountering a disability rights issue, we have a particular fund that provides funding for us to provide advocacy in that situation.
Thomas Crishon:
We have on for individuals with mental illness. We have one with individuals with traumatic brain injury, beneficiaries of social security, individuals you utilize the representative payee program. We have a client assistance program that, if individuals receiving service under the Rehabilitation Act, so for instance the vocational rehabilitation program, we provide advocacy in those situations. And then some of the issue specifics, we have one for assistive technology only. So if an individual needs assistive technology devices or services, so say a motorized wheelchair or talking computer, or adaptive computer software, we can work through and provide advocacy through say case management, legal representation, advocating for, say, a waiver program to fund those. Then we also have one for voting access.
Thomas Crishon:
So we have program that cover, like I mentioned, almost every disability rights related issue. And if they encounter that issue, if they think they've been discriminated against, or they need help with a vocational rehabilitation denial, the contact the local P&A, usually the P&A will obtain that information, then make a determination if they can provide those services, and then they move from there. And I mentioned earlier, we have a wide spectrum. We try to work things out in the least intrusive manner. We try to contact the adversary and do some informal advocacy and see if we can come to an agreement for the individual we're working with and accomplish their goal. But if that fails, then we can move from there. If it does move to having to file, say, an administrative appeal, or state litigation, then we can.
Thomas Crishon:
As I mentioned with the voting lawsuit, if it takes filing federal litigation, we absolutely can do that as well. So the level of services certainly depends on the individual's situation. I will note, obviously, we're federally funded and we do have limited resources so we can't say yes to every single call we get unfortunately. But the first step is for the individual to contact their local P&A and say, "Hey this is my issue. Is this something you can help with?" And that's the first good step. If it's technical assistance they can provide it. If it's legal representation, then we have that option as well.
Claire Stanley:
And I... Oh.
Clark Rachfal:
What is the best way to contact or find contact information for a state P&A? Is it by contacting you all by phone? Where would they find that number? Is it googling their state and P&A? Or checking the NDRN website? What would you recommend for individuals to do?
Thomas Crishon:
Yeah so if they're looking for their specific state's P&A, and they don't know what that is, then I think the National Disability Rights Network's website is a good first start. They could also just google your state and protection and advocacy, and I think that would probably find the specific organization for your state. Here in Indiana, we can take it all. So for instance, we have two excellent dedicated intake and referral staff people. They take phone calls, they take mailing letters, they take electronic communication. We have an electronic intake form on our website. There's a varied way to contact us and let us know that you have an issue. And we're trying to be as accommodating as we can for those individuals who need to contact us. And I think that's probably true for most P&As as well. But if you're not sure what your protection and advocacy organization is in your state, I think NDRN's website's a good one. And like I said, if you just google your state's name and protection and advocacy, I'm pretty confident your state-specific one will come up.
Claire Stanley:
And to our listeners, if you guys ever have any issues finding that information, just put in a call to the national office at ACB. We'd be happy to help find that. And eventually, not now and now as of December 2020, but eventually ACB is going to put on their website contact information for the P&As for each state. So that should be easily obtainable eventually, not today. But we understand that's an important thing and we're going to promote that.
Claire Stanley:
Great. Well thank you so much Tom. I know I learned a lot and I really enjoyed hearing about the work you guys are doing in Indiana and across the country. So thank you so much for taking time out of a busy time, especially as the holiday season is coming up. And thanks for all your hard work, especially on the voting rights case.
Thomas Crishon:
Absolutely. Thanks for having me. And if I could maybe give a state-specific plug. If any listeners are in Indiana, you can reach us at our toll free number which is 800-622-4845, and our email address is info@indianadisabilityrights.org. So we'd be happy to provide any assistance we can on issues in Indiana, and if it's not an Indiana issue we'd be happy to refer to a neighboring P&A. But very much thanks for having me, and I'm happy to talk with you today.
Claire Stanley:
Great. Thank you so much.
Thomas Crishon:
Thanks.
Claire Stanley:
Hold on for a minute and Clark and I will be back to close out the show.
Claire Stanley:
Hey everybody, this is Claire again. I hope you guys enjoyed our two guests. I know I really enjoyed hearing about all the work that they two offices are doing, really getting deep in the weeds of issues impacting the disability community. So round of applause for all the work that the two entities are doing. And it was really great just to get to know Cyrus and Tom a little bit.
Clark Rachfal:
So Claire, what did you enjoy the most? Or what was your main takeaway from the conversation with Cyrus about the work of National Disability Rights Network?
Claire Stanley:
I really just enjoy hearing the getting into the weeds of the policy work that NDRN is doing, and Cyrus specifically, are doing right there in Washington DC. I say right there. We're right there. But you know what I mean.
Clark Rachfal:
In the heart of it all.
Claire Stanley:
In the heart of it all. Especially with the new administration starting up in, gosh, just over a month. So it's exciting to hear that they're working hard to promote and advocate for policies that we'll see, hopefully within Congress and the new administration.
Clark Rachfal:
And certainly we are fortunate to consider NDRN a collaborator, a partner for ACB the national organization. But it was also interesting hearing about their structure. NDRN as the umbrella trade association for the P&As, and the P&As pretty similar to the state- and local-level affiliates and chapters that we have within ACB.
Claire Stanley:
Very similar. Yeah exactly. So I hope that's encouraging for our state affiliates and special interest affiliates to hear that you can have some allies right there at your own local level to go to and seek out when you need assistance, because there's some great resources.
Clark Rachfal:
And again, a great conversation with Tom Crishon. Nailed it.
Claire Stanley:
Nailed it.
Clark Rachfal:
Indiana Disability Rights, or IDR, giving us that local or state-level perspective on the work that the P&As do, how they operate, what happens when individuals or organizations reach out to them with issues. Just like any other organization they are a little bit resource restrained on the caseload, not that we would know anything about that.
Claire Stanley:
Not at all.
Clark Rachfal:
But they really maximize their efforts, and we have seen that across the nation this year, whether it's in the healthcare space, education, probably more so than any other when it comes to voting rights and accessible voting.
Claire Stanley:
Yes. It was also really interesting to just hear a little bit about what state-specific or local geographic-specific issues each area, region, faces because I think it's easy for us to get stuck in our own little bubble, for us especially here in the DC area. But I'm sure everybody. You live in your community, but even though we have overall sweeping issues that all Americans face, we also have geographic-based issue. So it's really exciting to hear that each entity can really get down into the mud so to speak, and address the issues that each region is facing.
Clark Rachfal:
Well Claire, as we wrap up this podcast and our conversation getting to know the National Disability Rights Network and the network of protection and advocacy organizations around the country, is there anything that you would like to share with our listeners? Anything at all? This is airing on Thursday December 10.
Claire Stanley:
I think that was a little nudge there Clark.
Clark Rachfal:
Nudge off a cliff, yes. Just a little one.
Claire Stanley:
Yeah. So everybody, I'm sad to say that this is my last week as an ACB employee. And I say employee because I promise I'm not going anywhere. I'm still a proud ACB member. But I'm actually going to start next Monday, December 14, as a public policy analyst for the National Disability Rights Network, NDRN. So I'm putting on a different hat to go work at NDRN, but will still be working on so many of the same issues. So you know if you need anything from NDRN, you now know somebody inside.
Clark Rachfal:
And certainly, this is not good-bye, but this is see you later. This is hear you on our committee calls, and community events, and geez. I'll probably see you sooner than others, but certainly when we have in-person conventions again, we all know that you will be there as a proud ACB member. So Claire, I just want to say thank you. It's been a pleasure getting to know you and working with you over nearly the past two years, certainly appreciate your passion and dedication to ACB and our members, and I know that your passion for disability rights and access will serve you well at NDRN, and it will serve our members well to have such a great force for good branching out from ACB into the broader world.
Claire Stanley:
Well thank you Clark. I appreciate it and I'm excited to bring the voice of the blind and visually impaired community to yet another entity. So remember guys, I'm here to advocate for our community. And yeah, again, you're not getting rid of me. Who knows, maybe I'll even sneak back onto the podcast somehow. So thanks again to everybody for listening to our podcast today. Again, if you have any issues, you can always reach out to ACB at advocacy@acb.org. I'm not answering them anymore, so go ahead and flood Clark with all the messages you want.
Clark Rachfal:
And Claire, one more time for the road, what do we always say?
Claire Stanley:
Keep advocating.
Outro:
Thanks for listening to the ACB Advocacy Update. You can reach us by emailing advocacy@acb.org. The ACB Advocacy Update is a production of the American Council of the Blind in Alexandria, Virginia. To learn more about ACB, visit us online at www.acb.org.