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Podcast – Kathy Carmody: The Institute on Public Policy for People with Disabilities Empowers Community

Wednesday, March 29, 2023
Podcast – Kathy Carmody: The Institute on Public Policy for People with Disabilities Empowers Community

This week, at The One Thing Podcast by The Horton Group, our host, Jason Helfert, talks to our guest, Kathy Carmody, Chief Executive Officer of The Institute on Public Policy for People with Disabilities. This organization’s mission is to promote policies that advance the civil rights and independence of people with disabilities. They work with policymakers, disability advocates and other stakeholders across the entire state of Illinois.

The Institution has grown quite a bit since it was founded 25 years ago – in the last eight years, its membership has tripled. They are the largest state association in Illinois devoted exclusively to people with intellectual and developmental disabilities and the community agencies that support them.

The pandemic certainly impacted this organization, making it difficult to maintain its momentum. But according to Carmody, their leaders have been able to take their scopes above sea level and look out into the future and the horizon.

“By design or default, our industry is changing,” she said. “We can either be part of understanding, shaping and preparing for that change, or we can be caught off-guard and find out that our service landscape has suddenly changed dramatically.”

Carmody has seen a shift in how the Institute provides services and uses technology to support people – and it’s a trend she’s seeing for similar organizations inside and outside of Illinois. There are many interesting models and programs that offer remote support when they need it.

“This enables people to access technology in their own time and use it in a way that benefits them,” Carmody said.

Listen to our podcast above for the full interview with Kathy Carmody to learn how The Institute uses research, training, policy development and stakeholder engagement to create a more inclusive and equitable society for all.


Hello and welcome to the one thing podcast brought to you by The Horton, Group, who specialize in Insurance employee benefits and risk advisory and I’m your host Jason Helfert. Does anyone have this type of Person in your life, the person, after every interaction, you have with them leaves you craving more. A person that has developed such an intense expertise in an area, they are the unquestioned leader in their field. Well that pretty much sums up our next guest. So anyone in the ID field in Illinois will certainly recognize our next guest and I am assuming they feel the same way about her as I do. So without further Ado, Kathy Carmody CEO of the Institute on Public Policy for People with Disabilities. How you doing? Hey, Jason great, glad to be with you. Thank you. Well, thanks for joining us. We certainly appreciate it. So, Kathy The Institute, what do you want people to know about its and your role within it as we move forward with the conversation today? Sure. Well the Institute is a Statewide Association of organizations that provide Direct Services to people with intellectual and developmental disabilities across Illinois.

We have been around for 25 plus years. I’ve been in my role with the Institute. Ali, just coming up on eight year, anniversary March first, will be eight years. The Institute

really used to have a much smaller footprint, I would say in the ID landscape and I’m really happy to say that in the last eight years, our membership has almost tripled. So we are near 55 Statewide organizations

from really across the state Central, Illinois, northern Illinois, Chicago Metro and down. And What is the southern part of the state? We are the largest state Association in Illinois. That’s devoted exclusively to people with intellectual and developmental disabilities in the community agencies that support them

a really, you know, robust group of CEOs, comprise our Institute board. Every every organization is on our board and I think people feel it really gives them kind of a tether to what’s happening in the idd space across Illinois and Really nationally as well. We’ve got some good connections at the federal level that really keep people abreast of Trends and topics that are impacting them and their service delivery. That’s a good segue. And so thanks for the update on that. And what one of the things I really enjoy whenever we get together, is your view on what’s happening outside of Illinois. And and I am the first one to say. Yes, it’s wildly important for every nonprofit leader in. Illinois to know what’s going on where in Illinois. Right. You know, the things that are changing in Illinois are going to impact the people in the communities, they serve. But I also believe as a leader in any business. It’s our responsibility to look outside our own four walls and see what’s going on elsewhere in. So, maybe our neighboring states or even on the coast to coast. And so, you know, what are you seeing Kathy? You know, what do you think that people are listening this podcast that are EDS or CEOs presidents of agencies? Illinois, need to know what’s going on. Outside of our four walls. Well you know what, I will say Jason has a kind of to level set is, you know, the past several years that we have all experienced have been unprecedented. And I think what happened during that period is organization, has to be so inwardly focused on just daily operations, really survival mode and I mean that literally people healthy and alive that we lost some ground in terms of probably some Forward momentum that maybe had been building within organizations. And what I say is I really believe we’ve reached a point where while we’re still really challenged with day-to-day operations and I get that I in my background, you know, ran agency operations at a large provider organization. So I understand that. But kind of the, the expression I use is I really believe that leaders in organizations have to have this mentality of Getting a pair of Scopes up above sea level, looking out into the future and the Horizon. And you know what, what I say is any organization that is still doing business five years from? Now, the way they are today won’t be doing business and you know, by Design or default. Our industry is changing and we can either be part of shaping that and preparing for it and understanding it more, we can be caught off-guard and find out that suddenly our Service landscape has changed dramatically and that’s happening already our pair landscape has changed dramatically that’s happening in other states,

what I would say at, you know, a national level, you know, certainly the challenge to recruit and retain, direct a direct support. Workforce is really something that nobody’s cracked the code on that. I mean, that remains, I think challenge number one for organizations, but we have to recognize. It’s not just the Session. It’s not just their the great resignation. Sorry,

you know the labor pool that we draw from.

I’ve used this expression before, it’s really become a laborer Pond. I mean it is, it is shrinking dramatically just based on demographic Trends and the competition for that labor pool is increasing dramatically not only in our space within I DD Services. You know think of Elders who need care in their homes, they are looking For that same profile of a person. Think about, you know, outside of our industry, we are all aware of, you know, hospitality and Warehouse Services Transportation. I mean that’s all effectively drawing from the same labor pool and so we’re not going to see a dramatic change in this and there may not be enough money to solve it from that standpoint. I think really kind of a shift in how we provide services. Was how we utilize technology to support people is really something that we’re seeing, you know, in Illinois and outside of Illinois. But, you know, if we, if our, if our soul strategy is to think that another 50 cents or a dollar, an hour is going to get us over the labor pool. Hump it’s just not going to happen,

you know? So I think that’s definitely something we see across the country. I think, you know, use of Technology. Again, there’s some interesting you know models and interesting programs that utilize, it more in housing and in what I call remote support it’s not remote monitoring we’re not kind of putting a cameras on people but really enabling people receiving services to access support when they need it. I kind of use the analogy in the same way. You know, you are. I might have a child or two child who’s going off to college and they face time to say, hey Mom, how do you make your their That I love right that really enabling people to access technology you know in their own time and use it in a way that benefits them. It’s interesting. You mentioned technology and I know you look at the this being February of 15th, it’s a labor report came out a couple weeks ago and labor market, still very strong unemployment is still very low. Businesses are still doing well they’re still hiring people paying people to good wages and so that’s the added pressure that you’re talking about and every business is forced to not every everybody’s They should adapted the technology piece. I think in our industry that being the nonprofit landscape is it’s even more Paramount to do something like that because the services were providing are, you know, lack of a better word. Almost more important than some other service injuries. They’re wildly a we need to get this, right? And so we can’t fix that labor. You know, Marta the labor pain, Liverpool be, we can’t fix that. We get certainly address and respond to it. But you know, I love the point about the technology piece and I, you know, I’ve seen some agencies are really Innovative, they have to be thinking Inside the Box, get outside their comfort zone, maybe invest in it more than they would have in the past and I think I agree with you completely that if we can start to get some of that, right? It’ll make the labor issue, not go away by any stretch of the imagination. Maybe ease the burden, we feel you know every day in a week and month a staff and staff and staff and pay and pay and pay extra point fifty cents on the dollar is nice, it’s meaningful. But is it going to solve that challenge? Yeah. Is it going to cause the shift that we need it really, you know, it Is a shift, it’s something. It’s got to be something far more intense. I would say. Then some of the, the mildly incremental increases that we’ve seen sure, you know, another thing that, that we at The Institute talk a lot about I’m involved in a national level and Co chairing a committee for anchor, which is the National Association of idd, providers and state associations.

Looking at alternate, payer models and trends, Value-based payment models in, I DD Services across the country and yeah, we haven’t seen it in my home, state of Illinois yet some of our neighboring states. Indeed, in the midwest, we do see various models of that Wisconsin, Indiana, Michigan. Iowa is all in with a Managed Care, ltss long-term services and supports model.

But it is something, you know, that I try to remind organizations, we, we think of ourselves Selves, as Social Services, we don’t really think of ourselves as Healthcare and indeed, the overwhelming majority of services. We provide is paid for by a health insurance program, which is Medicaid. And when you, when you kind of step back and take a look at the macro Trends in the healthcare industry, not specific to idd. But hospitals, pharmacies therapy, out providers.

Doctors practice offices.

You know, there really Um has been for probably over 20 years but certainly its accelerated in the past 20 years, a real movement toward consolidation, networking Partnerships relations,

all kinds of different Arrangements that are designed to

improve output

reduce costs and create better outcomes for people receiving services. So it’s really something in the idd space. Is that

we need to be aware of, we need to understand. Because when those changes take place in states, do you know, they tend to take place at a legislative level, they tend to take place at an executive level and those folks really don’t have the understanding of our industry. The nature of Service delivery is not like any other, you know, component of the health care industry. And so, you know, while there’s a lot of apprehension about Changing pay your models among providers of services, families of people receiving Services.

You know what? I kind of try to remind people is most people don’t think the pair model. That’s, that’s, that’s in place for them. Now is working very well. You know, they. So what we, what we find ourselves doing is saying, well, we don’t like what we have, but we don’t want it to change and really we need to focus on is we need to be a part of whatever that evolution is going to be because We have the expertise, we know the people we support better than you know, anybody at Commercial Insurance level, a terrible state of level. So that’s really been a focus for The Institute in terms of Education partnership with a lot of others at the national level and trying to make sure that organizations

Focus as much on trying to understand what the possibilities are. As in trying to Stave off that from occurring. Because it

we Remain the idd space Remains the only fee for service, you know, industry and health care. And there’s a lot of Medicaid dollars invested in it and it’s just not a model that I see continuing on say for the next 20 years at the national. Okay. So if you play that out so who wins in that model and is this? I did mention consolidation and so there’s some thought that, you know, bigger is certainly better. For certain reasons, I’m not advocating. You know, you’re advocating for every agency out there to go. Merge with somebody right away. Nobody’s saying that right. There’s a lot of a lot of really good things. They able to local agencies, you know, community-based setting and I love all that. And so who wins in that model if that tends to play out that way, you know. I depending on which path that takes and there are, you know, mm I wouldn’t say million. There are a lot of different ways. This has played out in States and a couple of our neighboring states Kansas and It’s really been a commercial Managed Care, Managed Health Care model that’s been superimposed. On the idd industry. And my colleagues there would tell you that that does not work out very well. And winners are not necessarily the people receiving Services elsewhere, Tennessee, Wisconsin, there is a Arkansas. Is another example where there’s been much more provider involvement in the development and implementation of different payer models for services.

Definitely, I think there’s a fear among smaller agencies that there wouldn’t be a place for them in that kind of a landscape and I don’t necessarily see that. Indeed, what some of the payers and other states tell us is that some of those Niche providers are really their most successful networking partners because it’s almost, it’s interesting that, right? It’s almost somebody can pick up the phone and call. Kathy Carmody is a CEO of a small organization and say, hey Kathy, we have this person that we think your services could Only well support and is this something you can consider? I think another thing that, that alternate pair models can provide is a lot more flexibility in payment for support the nature of supports, you know, in different models, they are responsible for impatient Health Care as well as ltss. So in the model that exists in Illinois today. Jason

An organization has no real Financial

impact. If somebody goes into an extended Psychiatric Hospital stay, they’re not paying for it. Interestingly, in the state of Illinois, neither is, I DHS, which pays for ltss, it’s HFS. And there isn’t necessarily

kind of strong care coordination for people outside of managed care which most people receiving services in, in community, settings are outside of managed care because they can, Opt out if there are dual eligible. So what happens is a person may stay in a inpatient psychiatric setting. When if resources could be put in place in their you know their place of origin, it’d be far less costly and they could be stabilized there’s no real mechanism to do that the way things work in Illinois right now in other states. Indeed the payer has a strong incentive to keep somebody out of an impatient placement and as we have heard from both Years and providers. In some states is much more willing to partner with an organization to say. What is it unique? Do you need bcba on site? You need our own psychiatric nursing. Do you need, you know, daily nurse practitioner involvement and they control those resources. So now does it always work that way. No, but again, that’s my my rationale for why providers have to be aware of, you know, different different models. And Be a part of conversations when they, when they start or lead conversations to assure that that people receiving services are the real winners in any, any payment model that exists? Sure. Now, you mentioned payment models and payer mix, right? And fee-for-service. And I think most people listening are aware of the guy Dow study, right? I think that’s probably probably will. But if you’re listening and you’re in the idd space, I’m certain you’ve heard it. And so what was it? What did people think it was gonna do? And how has it impacted a lot of those idd agencies you work so closely with sure. So. So folks may be aware that Illinois is under a federal consent decree overseeing, our idd community service delivery system, it’s called the leg Ascent consent. Decree named after Stanley legis who, in fact, I knew back in who was living in an IC F DD setting, but so in about twenty Seventeen, I believe it was the parties agreed that the state would do a rate study to evaluate whether their existing payment model for community-based services and IC. F DD services in the community was adequate. There was a lot of involvement from Community agencies, a lot of input. There was an oversight committee and a multitude of different committees that fed into the oversight committee. Personally, I chaired, What’s called, the Staffing committee, which people would probably say is one of the more important, if not the most important committees, Um, guide house, then maybe recommend recommendations to the state in late 20 24.

Different changes that could and should be made to how Scylla Services IC, F DD services, and what we call Community Day services are funded the state adopted, the body of recommendations. However, adjusted the timeline for implementation, we have had a steady increase investment in idd community services, over the past three years, since guide house came out. I would be remiss not to say. We had a lot of catching up to do and we still do, there was a, you know, decades long plateau of investment in community services, most

recently. And and guide house has been responsible for steady wage increases for dsps again. What I would point out and what people know is that the state minimum wage Each has also increased steadily over the same period of time. And indeed, for example, in January of twenty twenty-three State minimum wage increased in Illinois and the guide house, mandated DSP pass through increased by the same amount. So there’s no real Net game. What we’re trying to do is build the Gap. Back to the original 150 percent between minimum, wage and DSP wages, what’s happened? Most recently is that agencies were given if you will draft


payment projections, those were rescinded very quickly. And revised projections were were just disseminated in the past really 10 days and what agencies are finding? Is that what we indeed have found system-wide? Is that while there are increases in some of the payment components of the Silla rate methodology? There’s an overall net loss of DSP funded hours. So you know what? One thing I kind of say is that nobody ever said that one of the problems in our system is, we have too many Deeds, too many DSP hours. That’s never been something that people is something we needed to it. Nobody’s volunteering that right. We fixed a problem that didn’t exist and that is, that is the net effect. Right now? We are in constant communication with the state and we are, you know, Being that we are going to see some adjustments to what I would call the second round in an Illinois organizations. Know what I’m talking about? The second round of rate information that they received. However, as of today’s date, we don’t have anything further. Well, that’s, I mean, the most obvious demon of this this podcast is, that’s going to be a huge challenge because as service providers are not going to just not provide services, right? They’re going to have to, that’s their mission. They’re going to do that. And so it’s about a financial strain, that’s going to hit potential. Lee. Maybe there’s an amendment, maybe that’s the address it but that’s not going to be well received. Oh no it’s not. No no it’s not being well received it and again you know and to your point Jason an organization cannot provide the staff. What is now happening is they’re not funded for those staff. So they have to take money that they were supposed to use to increase wages across the board for. Yeah. But lying staff and and out of like that money to pay unfunded hours.

Though it were still in the we’re still in the sort of a little bit of Dazed and Confused phase with it and people are doing a lot of calculations,

but there’s a lot, we don’t know, we don’t know some of the formulas behind some of the calculations. And and again we met literally yesterday with DHS leadership, including the secretary who wanted to hear what the impact was and wanted to, you know, try and collaborate on what some solutions going to be okay. Well, that’s certainly not a positive going on in Illinois. If we, if you had to identify a trend that you’re seeing, as a positive, pause momentum things that are working. Well, right? So that’s maybe that’s as example of maybe what’s not working well, right now, maybe it gets a dress, but what do you see what’s working? Well and what, I guess when you look at your providers that you work with on a daily basis, what do you most proud of as far as the service providers in Illinois that you’re proud of? Hey I work alongside them. Yeah, I mean we definitely have such a strong network of Organizations. And and, you know, I can speak both to the members of The Institute. I have a broader perspective just because I’ve been here in Illinois for as long as I have,

you know, and we definitely have a strong network of organizations. I think, among organizations, we have strong collaboration, we have strong partnership. You know, my members, you know, in many cases, share Footprints Service, delivery Footprints with, with other fellow members and You know, their interest is in assuring that that everybody is getting the best services that they can. So it’s I think that, that feature of our system is a really important quality and I think that will continue and you know, Jason, I think that’s one of the things to to part of our earlier conversation about, you know, how might a small organization sustain themselves, you know. I think there’s different models of partnership and and I’m a big proponent of the affiliation model which gives Organizations are sort of forward facing identity and maybe some of the things that they are spending a lot of time, doing that weren’t really what they came into the industry to do such as trying to figure out rate sheets and Fleet Management and Property Management. Some of those things you know are being Consolidated on the back end which I again. Is that that personally is my preferred model of partnership because, you know, I do think that having options Different different organizations that people can can choose services from is important. I think also, you know the the involvement of the federal court and our Legacy monitors, a very strong asset here in Illinois. Who again has you know, certainly only the best interest of people receiving services in mind as she is working toward you know, fulfilling her role and making sure that the system is moving in that direction. Okay. This positive. And so you mentioned a couple three words mentioned partnership collaboration and membership. And so you have a summit coming up this year. As before we hop off, when I give you the floor, you already have the floor so you can keep the floor to talk about, you know, your summit coming up the at the later on, in the year, you know, who should attend and what could people at a 10, you know, relatively, what could they expect? What do they, what do they look at? They learn who they going to meet. So yes, We do we sort of resurrected that model on Gathering people

which we had done precoded. What I will say is our Summits are not a traditional idd industry conference. It really is a c-suite event. It is not something that clinical staff or Frontline staff,

it’s not that that is not urgent that they get information as well, but we really are marketed towards That c-suite on agency, leadership

interest, you know, one of the things I think is interesting is that we don’t have breakout sessions. We you just every session was a keynote session, our speakers all come from outside of Illinois with small exceptions. I’ll you know, give some examples of names. People might recognize our 2022 event opened up with Serena Lowe and most people regardless of whether from Illinois or not. Will know Serena’s name. Because she essentially used to be The chief policy maker at the federal level and effectively has her DNA all over the HCBS settings, rule

about something about two years ago, she left ACL the administration on community living and crossed over to a managed care company Care Source. And so that is really a fascinating transition that I wanted people to be able to hear about and learn from this again. Serena You know, kicked off our session, we had a great moderated session with three out of state organizations that indeed have different models of m&a activity. I call it Ma and a merger acquisition and an affiliation. We had Linda Timmons who’s the CEO of Mosaic we had. Bob Longo who is in the private Equity space and we had a provider from Iowa who indeed has a, you know, built a network of organizations from what used to be Be under 5 million to Now, 60 million. So, for people to hear those stories and learn. It really brings some different information and Intel to CEOs than, you know what, they would probably get at a more traditional industry conference. So, my only concern is, you know, how are we gonna top our November 20 22 event because it really was just was just, you know, got great feedback. And and had nearly 200 CEOs. I think 11 states represented. So again it’s not a little eccentric, you know it. We had folks coming in from literally East Coast California Midwest. It’s a very, you know, again that the topics that we talk about are really topics that are impacting, anybody providing I DD Services, they’re not specific to to our industry, human aluminum. Sure. Well, I love it and okay, at the on behalf of people all over Illinois, you have a tied to the idd world, in whatever, shape or form. They’re very of be a family. Affair members getting Services, there a DSP that our vendor working with the with the industry. Want to say, thank you for your leadership. Thank you for your stewardship. Every time I speak with the, I learn more than I ever could imagine. So I want to say thank you for your friendship and joining us here on the podcast today, absolutely looking at, you know, looking forward to Future conversations and You know, folks who view it know where to reach me, go to Institute online, dot org, or Kathy, it Institute online dot org and in the email and, you know, always happy to talk to organizations here in abroad. Just that’s part of what we do. Well, thanks so much Kathy so well, I wrap it up for today. So until next time on behalf of The Horton Group, I’m Jason Helfert saying thank you for listening for the one thing but guests.

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