The Arc Experience Podcast
It's Recess Time: Educating Members of Congress in August
There is a lot happening in Washington these days for people with disabilities. And as the old saying goes – if you’re not in the kitchen, you are on the menu! Today’s guest is not only in the kitchen in Congress, but she is often busy mixing up the ingredients to make the lives of people with disabilities and their families better. In this episode, Nicole Jorwic, The Arc’s Senior Director of Public Policy tells us what happens during August recess, what’s at stake in Washington for people with disabilities and why it is a critical time to build a relationship with your Member of Congress.
August Congressional Recess Resources:
The Arc US Action Center: https://p2a.co/lRPDZ5C
Find your federal legislators: https://www.govtrack.us/
There is a lot happening in Washington these days for people with disabilities. And as the old saying goes – if you’re not in the kitchen, you are on the menu! Today’s guest is not only in the kitchen in Congress, but she is often busy mixing up the ingredients to make the lives of people with disabilities and their families better. In this episode, Nicole Jorwic, The Arc’s Senior Director of Public Policy tells us what happens during August recess, what’s at stake in Washington for people with disabilities and why it is a critical time to build a relationship with your Member of Congress.
August Congressional Recess Resources:
The Arc US Action Center: https://p2a.co/lRPDZ5C
Find your federal legislators: https://www.govtrack.us/
Welcome to the arc experience, featuring the stories of self advocates with disabilities and their families from around Wisconsin. Be inspired. Take action. And now for today's episode,
Speaker 2:Hello and welcome to the arc experience podcast. I am your host, Lisa pew of the arc Wisconsin. And today we're talking a little bit about recess. We'll get into that in a second. There has to do with Washington and federal policy. There's a lot happening in Washington, these days for people with disabilities. And as that old saying goes, if you're not in the kitchen, you're on the menu. So today's guest is not only in the kitchen in Congress. She has often mixing up the recipe to make the lives of people with disabilities in their families better and convince our elected officials on both sides of the aisle to just do the right thing. Um, Nicole, Rick is senior director of public policy at the arc of the United States. She has more than a decade of experience working at the state and national level, developing public policy best practices in serving individuals with disabilities. Nicole, thanks for joining.
Speaker 3:Thank you so much, Lisa. And thanks for that kind introduction. That'd be here.
Speaker 2:No, Nicole, before we kind of get into the meat of this podcast, I know that you're driven to this work for a very personal reason. I'm wondering if you could share a little bit about that?
Speaker 3:Sure. Yeah. Um, I mean, definitely what drives my work, uh, is my brother, Chris, my brother, Chris is 31 and has autism. Um, so, um, disability has been part of my life for almost my entire life, although he's quite a bit younger. Um, and so the needs that he has, the fact that he receives, um, some of the services that, that I along with the rest of the arc network is fighting so hard for is something that keeps me going. It's also something that makes it a little heavier sometimes, but it's definitely the thing that, uh, drives the work that I do. And I think everyone on the hill certainly knows my personal connection to, um, and that always helps in addition to all the numbers and wonkiness the personal touch always helps.
Speaker 2:Right? I know I've heard you talk to people about sharing their stories. And can you talk a little bit about, uh, in public policy, how important that personal story is?
Speaker 3:Yeah. I mean, frankly, personal stories are the most important things when it comes to impacting change in public policy, whether it's at the state level or at the national level, you know, we can be being the kind of professional lobbyists can always follow behind with, with, um, numbers and data. But what a legislator is going to remember is the person that they heard, um, with a family member of a person with a disability that the person with a disability themselves talking about how something matters to them and how it impacts their lives. Those faces remain in the minds of those folks when they're voting more than a number or statistic. And so stories are the most important thing. And so it can be difficult. I know it's not always easy, especially when things aren't going well. That's certainly true in my S my situation. Sometimes my brother's having harder moments and then it's harder to talk about, but, uh, it's why I really value everybody who does make that step and share that story because I know the impact that it has when push comes to shove
Speaker 2:Well, and speaking of sharing personal stories, I know that we have some opportunities coming up to really have an impact on our elected officials. Not that we can't all the time, but August I know is traditionally the time. Um, they call it August recess. And I know when I first heard the term or congressional members go on recess, I was like, well, they just get some recreation, you know, what does that mean? So can you describe for our listeners kind of what is August recess and what happens during that time? Sure.
Speaker 3:So you can think about recess when you hear recess, is that, that means that legislators are going to be home. They're going to be home in their states. They're going to be home in their districts. So it's not for recreation or recess in the way that we might think about it in the traditional context, but it's for recess from traditional working period. So Congress, when they are in session, we call it that's when they're doing work, passing votes, doing work in the committees that they might be sitting on. And then recess is time when they're back in their states, in their districts, hearing from constituents. So recess is really, really important when it comes to engaging with your legislators, because it does mean that they're around the, obviously in the pandemic, that means something a little bit different than it might have at other times in the past. That's when you would see things like big town halls, where legislators were meeting with, with their constituents, some of them are still doing some smaller in-person things. And I think we'll see more of that pick back up. Um, but maybe not fully by August. There's a lot of actually opportunities for w to participate. If folks couldn't have before made it to an in person event, there's a lot of virtual briefings, virtual events. And so that's actually a really exciting opportunity to engage more. And, um, August is a really important one because it's one of the longest ones. Um, they're typically out the whole month of August. Um, that's true. And it's actually a little bit longer this year because there's some additional, um, committee weeks at the end. So there, if you really think about it, they're going to be home for the beginning of August until around September 20th. So it's a really good time to be having your message known. And the arc of the United States will be putting out plenty of information and ways that different ways that you can engage with your legislators. So that's what a recess is. And that's why it's really, really important, especially this year, too, given the timing of everything we, um, I'm happy to talk more kind of about what we're pushing for and I'll do that later. But, um, the timing of when it's all expected to come together for when they're going to be voting is, um, the end of September. So it's even more important to really get in, um, during that time
Speaker 2:While you're and the pressure on us. Well, I'm just glad to know our elected officials. Aren't just getting some recreation. They're still working on their recess. So, so it sounds like you have a job for us. Uh, during this August timeframe, our elected officials would come back to Wisconsin. So when we say elected officials, and when we're talking to Nicole, we're talking about our congressional members, our senators members of the us house of representatives, Nicole, what are the issues that we really want to help those individuals understand this August? Because, I mean, I know we could talk about anything that's important to us. And I know a lot of people that listen to this are, you know, it's special education, or it might be homemade human based waivers, uh, general Medicaid, um, transportation. So, and, and those are all obviously important, but what are some of the key decisions that our elected officials will be making? Like you say, when they come back to Washington, that we want to kind of leave them with an impression of what's needed. Yeah.
Speaker 3:And Lisa, you raise a really important point because, um, there are a lot more than just the issues I'm going to be highlighting on that. Her focusing on that we will be working on behind the scenes, but what the arc tries to do in order to make it really clear for our advocates, but also clear for legislators is we kind of prioritize. And so we have our top three issues that we're really focusing on to keep it simple and to keep the message simple. And then also too, so that it's easier to tie personal stories to these issues. And so our top priority, and it's not just because it's the one that I cover, um, is, um, a$400 billion investment for Medicaid home and community-based services or HCBS, this is something that has already been proposed by president Biden in what, what he calls the infrastructure package or the American jobs plan. And the$400 million is meant to expand access to those Medicaid home and community based services. Those services can include things like job coaching, supporting somebody to live independently, supporting, um, uh, community integration, personal hygiene, et cetera. There's a wide variety of those services. And so it's about creating more access. So meaning for people who might be waiting for those services, giving them that access also relieving the pressure on unpaid family caregivers who are filling in the gaps in those services while we wait. And the$400 million is also for addressing the workforce issues when it comes to providing those Medicaid home and community-based services, we don't have enough workers, and that's why it is infrastructure, right? Care is infrastructure. But anyway, so number one, top priority, the$400 billion investment in Medicaid and community-based services for a hundred dollars Medicaid each to BS. That's all you need to know and then talk about why they matter.
Speaker 2:And for our listeners and Wisconsin, when Nicole says HCBS, that might have a different name depending on what state you're in. So in Wisconsin, an HCBS are home and community based services, waiver program would be think about family care, Iris family care partnership, and the children's longterm support program. Those are HCBS.
Speaker 3:Thank you, Lisa. And yes. And so those would be the ones that would be bolstered and expanded underneath with this additional funding. Um, and it is important to note what, uh, the differences between the states. Um, and so that's our top priority. Our number, our second priority, um, is around making sure that there is a, um, paid leave pro a national paid leave program to support family caregivers, to support people with disabilities, to have access to that paid leave is really important. And it's something that the arc has been doing a lot that I don't know, gets as much attention, but we're, um, uh, one of the disability groups that's really in that space, making sure that any of those policies are inclusive, um, inclusive of all workers. So including workers with people with disabilities, but also being inclusive of all family caregivers and that cause that family might be different, right? It might be someone like me, who's a sibling, et cetera. So that's our number two priority.
Speaker 2:And Nicole, just a quick pause on that when you say paid leave, that means that if I need to leave my job, because either I have a chronic condition and it's flaring up and I need to take some time for medical care or just, uh, uh, because of my condition or if I'm a family caregiver, like you said, a sibling, I need to go and take care of my brother or sister with a disability because of their medical or disability related needs. That's where I could be entitled to some paid leave time from my employer.
Speaker 3:Yes, definitely. Those are two really good examples. A lot of people, the context that they no pay leave, um, in is with, is around, you know, um, taking leave after the arrival of a new child. But yes, it's much broader than that to your point, which is why we're focusing on it. It's, you know, paid leave for a family member who has to attend a two day IEP meeting, those kinds of things. We need to make sure that, that those are included. And that's why the arc is the according and national paid leave program.
Speaker 2:Yeah. Very much needed. Thank you, Nicole. And your number three.
Speaker 3:Yes. And, um, and number three, and I should note that both number two and number three are covered by my wonderful colleague, Bethany, Lily, um, and our number three is around addressing the income and asset limits in supplemental security income or SSI. Um, folks might not realize, but there are, um, really strict income and asset limits that really prohibit people with disabilities from taking additional hours at a job or moving onto a different, higher, um, higher level job. Um, and so this, something that has been on the arcs priority, all of these things have been on the arts priority list for a really long time. But if we're talking about economic recovery, we have to make sure that we're also being inclusive of the needs of people with disabilities. And one way to make sure that we can have more economic independence is by addressing these issues. And these are decades old problems. These have not been adjusted for decades. And so that's our number three priority to try to get into that recovery package. So again, all three of those priorities date, the medicated CBS, the paid leave as well as adjusting, um, income and asset limits for SSI are things that we're trying to get into the package that we expect to come in together in September
Speaker 2:To come in September. Okay. So when we meet with our congressional members in August, because I'm sure everyone listening is now going to do that, um, will we be, um, will they know when we reference this recovery package? Like this is going to be something that they've been thinking about or heard about
Speaker 3:They should. Um, but it's not luckily or not. I don't know if it's luckily or not, but there isn't, there hasn't been like a legislative vehicle or a bill name, right? Like, so with the Americans with disabilities act, that was the bill name. So we can't call and say support XXX act. Um, we have to talk about the issues, but the baseline is, um, in, in recovery legislation, you please include HTVs, um, paid leave and, um, SSI income and asset limits so that the ask is around being included in recovery.
Speaker 2:Got it, got it. Okay. That sounds easy enough. So, uh, I'm getting ready to set up a meeting and August. I know what my talking points are. What's your advice for how to have a really good meeting during August recess? Are there any kind of tips?
Speaker 3:Sure. I mean, so anything that you can find out about the legislator or the, or if you're meeting with a staff member, for example, sometimes those staff members have personal connections to the issue. They might have most sibling of a disability, a cousin with a disability, if there's any way to get that until ahead of time, that's always helpful or ask the question, um, because they might not, um, they might not be out, uh, forthright with it, but when asked the question, they probably would engage. Um, and so it's always, it just always helps to kind of make those personal connections as you're building relationships. Um, but, but when it comes to just having a successful meeting, it really just comes down to you don't need to be an expert on Medicaid or waivers or, um, anything, all you need to be an expert on is your own story and how it impacts your life. So if you're talking how to have a meaningful meeting is to talk about it. So if I was going to meet, um, not as Nicole from the arc of the United States, but as Nicole Jurich sister of Chris with one of our senators in Illinois, where I'm from, um, just over the border, um, is I would sit down and I would talk about how without the support of the direct support professional and the funding that our family, that Chris receives and assist our family in Medicaid, home and community based services, Chris would not be able to get out into the community. Um, my parents w one of my parents would have had to give up their job. Um, and that's why it's really important that you make this big investment because of the huge amount of need for these services for people outside of just my family, that's it, it doesn't have to be complicated and that, and I'm not just saying it, but it is the most effective thing. Um, and so how to have an effective meeting is to just not worry too much about your talking points and just worry about that connection.
Speaker 2:So you mentioned meeting with staff, um, is that good enough? I mean, should it be pushing for a meeting with the member or what are your, what's your perspective on me misstep?
Speaker 3:Sure. I mean, I think it's, it's good to, to get whatever you can get. So it's not, if you get a response back that says so-and-so staffer can meet with you, um, I wouldn't push an and say, oh, no, but I wanted to meet with Senator Baldwin or, or what have you. Um, I would take that meeting because frankly having the relationship with the staffers, um, especially at the district level, then if something is coming up and you get an action alert from the arc about something else that's popping up, it's much easier to get ahold of that individual staffer than it is to get a hold of them, the member. And you can also then make the ask at the end of that meeting with a staffer. You know, it was really great to meet with you, hopefully the next time that the Senator or representative is in town, you know, we can invite them to a program or something, um, or, or have that one-on-one meeting, um, with the legislator. So don't be discouraged if you meet with a staffer. Um, the majority of the work that I do is, is with staffers and, and we've been pretty effective. So don't, don't be discouraged by that at all.
Speaker 2:You know, you've mentioned the word relationship a number of times, and I think that's such an important thing to remember that it's not just like a, I had my meeting and we're done, like you want to be building that, um, relationship with that elected official over time, right?
Speaker 3:Yeah, definitely. You want to have that foundation because that is when it's easier to get a call answered or to get a meeting down the line. And, but it's more than just being transactional. Right. I don't want to make it seem so. Um, it really, it really is the thing that makes them remember you too. Um, and then if an issue comes up that they have on their radar, they think of you to call. Um, and I mean, I know I can speak for myself personally, being in DC for the past six years. Um, the success that that we've had is because of the relationships, the personal relationships, I've been able to build myself and others at the arc, I've been able to build with staffers, um, because that then you're on their radar. Um, and to the point that you made early in the podcast being on the radar is the same thing as not being on the table. Right. If you're on the radar to ask the questions, then probably you're not going to be surprised. And the best thing that you can hope for in, in legislation is to not be surprised. And so, um, you know, I think of a lot of this as sales and relationships. Um, and so it's, it's just important to do that. It's important to be consistent to your point, to not only go in also to not only go when you're asking for something, if your legislators having an event for, you know, a parade or something, and you see, you can be there and just say, Hey, and say, thank you for something that they did. It has to be all of that in order to build that foundational relationship.
Speaker 2:So, Nicole, I just want to thank you on behalf of a lot of individuals with disabilities and family members, about how hard you work in Washington and the success that you've had an increasing attention and awareness to, um, the needs of people with disabilities, specifically with home and community-based waivers and the need for investment. And you mentioned the direct care workforce crisis, which is huge. I know nationally, but very acute in Wisconsin. And I guess, um, I'm wondering how you're feeling, uh, in terms of the future. I mean, are you optimistic that Congress will be making investments that make people's lives better? Do you feel as if the next say four years are going to make some significant changes?
Speaker 3:Yeah. So first of all, thank you. Um, I think that, um, I am optimistic and I'm, uh, I think that, um, because of the work that so many people did, when so many things were under threat for the past four or five years when Medicaid, the program itself was under such a risk for taking huge cuts and, and us knowing how that would impact the service system for people with disabilities and their families. I think that's why we have that foundation of support. Um, it wasn't, you know, four or five years ago, there were a lot of legislators that didn't even know the difference between Medicare and Medicaid, and that doesn't exist. A lot of this has happened even in my short tenure six years. Um, and I'm not saying that that's because of me, it's because of the work that everybody has done, that every member, every person that's, that's part of the disability community, and also the I'm optimistic because of the fact that we grew up, we're growing our influence outside of just the disability community, the disability community is extremely powerful. It's one of the, the, the groups that consistently gets called out for the reason that we still have an affordable care act and that those big Medicaid cuts didn't happen, but we also have to get out of our silos. So we're working more with groups that we might not have in the past group that are women's groups, labor that are now talking about community-based services that never happened before. All of that leads to greater access. All of that leads to these huge investments. We've never seen a proposal that includes we were, we were thrilled to get$12.7 billion for one year of funding in March. And then two weeks later got an announcement about$400 billion. That's a concrete example of the success. And the, of the huge understanding that there finally is, I'm optimistic, but it's still going to take a lot of work. It's still going to take a lot of people, a lot of public education, a lot of people who might not have a personal connection to someone with a disability or an aging adult, caring about this issue to give, get us to where we ultimately need to go, but I am extremely optimistic. And I think that's why it's so important for folks to use times like August recess and other things, because we have to keep the pressure on, um, we can't just assume that this is something that's done. We have to remain vigilant. Um, but I am optimistic that if we do, we can, we can get to a place where every person with a disability has the services that they need, um, in their homes and communities.
Speaker 2:Sure. So, uh, any, any place to turn us toward more recesses help us or more resources, resource recess, I'm getting it mixed up. Where, where do I find more resources about August recess?
Speaker 3:Yeah. So we're putting together as we speak, um, a toolkit that will be available next week. Actually anyone who's on the arts, um, lift. Um, so if you're not the arc.org/action is a good place to go. You can sign up for a list, but even if you don't, there's a place where you can share your story. There's a place where you can find our action alerts that have blurbs from, for the three priorities that I talked about. So I would definitely point you there. Um, and always check that our blog that's where we post, um, new information, uh, and that's where, we'll where we will be posting next week, a blog that Bethany and I wrote under the umbrella of care, can't wait, which is what, what theme kind of, of our recess activities and toolkits is going to be around. Um, and, um, tying the issues of HCBS and paid leave and social security together about how they all impact. So, um, those are, those are some, uh, quick places to go, but definitely the arc.org/action, um, and, uh, is always a good place to start.
Speaker 2:Okay. I'll put that in the show notes. So as we wrap up our time together, I just wanted to thank you again for joining us. I think our takeaways are, um, make sure you participate in August recess, get your meetings. Your top three priorities are the 400 billion for HCBS paid leave and the in income asset limits for SSI. Any other things you want to make sure we remember before you say goodbye, Nicole.
Speaker 3:Um, I just, I just want to want to remind folks that I know it can be exhausting. I know it can be tiring. I know it can seem like we're for, um, tweaks to the same sentence over and over, but it really is important. We had over 200,000 actions to Congress that led us to that 12.7 billion and we're going to need even more so don't, don't, uh, get tired and don't get discouraged because we really are on the precipice of things that have been on the art's priority list for decades. And it's because of everybody. And so we're, we're stronger together and we'll keep moving forward and I really appreciate the timeliness.
Speaker 2:All right, everybody listening, make that call and get that meeting participate in August recess. Thank you so much, Nicole. And thank you to our listeners of the art experience podcast on your mostly some pew, please be sure to like share and subscribe. And we'll talk to you next time.
Speaker 1:Today's episode of the Ark experience was brought to you by the arc Wisconsin, the state's oldest advocacy organization for people with intellectual developmental disabilities and their families it's funded in part by the Wisconsin board for people with developmental disabilities. Our theme music called species is the property of[inaudible] and cannot be copied or distributed without permission. It was produced by Eleanor Cheetham, a composer and artist with autism.