Hope Starts With Us
Hope Starts With Us
Medicaid and Mental Health: What Changes Could Mean for Our Community Featuring Sue Abderholden, Anita Burgos, and Hannah Wesolowski
In this episode, NAMI’s Chief Advocacy Officer Hannah Wesolowski guest hosts a special episode about Medicaid’s importance for the mental health community. Hannah is joined by NAMI Minnesota Executive Director Sue Abderholden and NAMI’s Director Public Policy, Anita Burgos. Together, they discuss the potential changes to federal Medicaid funding, what Medicaid is and why it’s so crucial, how federal funding cuts could impact states, and options for listeners to get involved and advocate for Medicaid and the mental health community.
Learn more at nami.org/medicaid
You can find additional episodes of this NAMI podcast and others at nami.org/podcast.
"Hope Starts With Us" is a podcast by NAMI, the National Alliance on Mental Illness. It is hosted by NAMI CEO Daniel H. Gillison, Jr.
Episode production is provided by NAMI staff, including Traci Coulter and Connor Larsen.
It can take three to four years for someone to finally become certified as disabled. We've seen a lot of people on Medicaid expansion be young people who are having their first episode of maybe bipolar disorder or psychosis, and they're not going to be certified as disabled. And honestly, I don't want them to think that they have to say they'll never work again. I want them to say, I'm going to work and I'm going to use Medicaid to get better. Welcome to Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness. I'm your guest host, Hannah Wesolowski, NAMI's Chief Advocacy Officer. NAMI started this podcast because we believe that hope starts with us. Hope starts with us talking about mental health. Hope starts with us making information accessible. Hope starts with us providing resources and practical advice. Hope starts with us sharing our stories, and hope starts with us breaking the stigma. If you or a loved one or struggling with a mental health condition and have been looking for hope, we made this podcast for you. Hope starts with all of us. Hope is a collective. We hope that each episode, with each conversation brings you into that collective so you know you are not alone. Today we're going to be talking about changes and cuts to Medicaid, a really important program. I'm thrilled to introduce our guests today. First, we have Sue Abderholden, who is the Executive Director of NAMI Minnesota. Sue has been NAMI Minnesota's executive director since 2001. She previously worked with The Arc Minnesota, the Minnesota office of the late, great Senator Paul Wellstone, and the PACER Center. She comes to this mission personally, and she is a nationally recognized advocate and has led so much wonderful change in Minnesota. We are thrilled to have her with us today. And we also have Anita Burgos. Anita is NAMI's Director of Public Policy. She's been on our team for the past two years, and I've enjoyed working with her so much. Before that, knew her as a senior health policy advisor in the House of Representatives and as a health policy analyst at the Bipartisan Policy Center and a Minnesota connection here. She was a health policy fellow with Senator Tina Smith of Minnesota, who is a great friend to NAMI. She is also, fascinatingly, a neuroscientist by training. She completed her PhD at Columbia, and that insight is always so brilliant and amazing. But probably most importantly, Anita is a family member and she comes to us with lived experience, with a loved one, with serious mental illness. And she's going to share some of that story today. So thank you both for joining us. We have a lot to talk about. All right. So we will start at the beginning. We're here to talk about Medicaid. There's a lot happening around Medicaid right now. And Medicaid is absolutely pivotal for mental health. But I don't think people always recognize why it is pivotal for mental health. Sue, I would love if you could give us a little bit of an overview of the Medicaid program and why it's so beneficial for people with mental health conditions. Absolutely. Thanks, Hannah. Well, 1 in 3 people with the mental illness actually rely on Medicaid. And partly to be honest, it's because private insurance often doesn't cover the very services people need to be well in the community. We know that Medicaid generally covers 72 million Americans. And about 2 in 5 of those have a mental health or substance use disorder. 1 in 10 veterans, are also covered by Medicaid, and 1 in 4 dollars are spent on mental health or substance use disorder. Also under Medicaid and the largest group of people on Medicaid are actually children. And so knowing that, you know, half of all mental illnesses emerge by the age of 14, we want to make sure, right, that children have access to the mental health care that they need so that they can grow up to be healthy adults. Why do you think people often don't understand who Medicaid covers, or why it's so important for, the mental health community? You know, I think I struggle sometimes with making sure people understand the breadth of services that Medicaid covers. And I'm wondering if you can speak to that a little bit. Well, one of the things is that states call it different terms. So Minnesota actually calls it Medical Assistance. And some people don't know that it's actually Medicaid. So that happens across the country. The other thing is that many states have turned to managed care to actually, kind of coordinate payments, under Medicaid. And so someone might get a card that actually says Blue Cross Blue Shield or, you know, Health Partners or some other, health insurance company. And so they don't actually know that they have Medicaid. But I think if people know that they're either an older adult, if they have a disability, if they're low income, they're more likely to be on Medicaid than private insurance. If you're not getting it through your employer, you are likely on Medicaid. Yeah. And I think that's the thing. A lot of people don't even realize that, they may have been on or are on Medicaid right now. This is more than just numbers on paper. Since the start of this year, we have been collecting Medicaid stories, and we have over 1200 of them that are so powerful. People really talk about how Medicaid has saved their lives. It has allowed them to engage in their community. It has allowed them to go back to work or finish school. And these stories are so important to make sure we protect Medicaid. And, Anita, I know you have a personal story. Can you tell us what it means for people with mental illness who are on Medicaid? What does that difference make in people's lives? Yeah, yeah, I'd love to. And thanks for the opportunity to share that story. So, I want to talk about my mother. So my mother is 74 years old and she has schizoaffective disorder, and she's been stable for the last six years. And so what that means is that she hasn't been to the ER or hospitalized during that time. And so this is entirely due to Medicaid. During her last hospitalization, I helped her sign up for Medicaid. And Medicaid not only pays for her mental health care, but it also pays, importantly, for her home health services. And so she has a home attendant who goes to her house every day, makes sure that she's meeting her basic hygiene and nutritional needs, but also making sure that she makes her really important mental health and primary care appointments. And these are services that are not covered by Medicare. So she would not have access to them if it weren't for Medicaid. And before she had Medicaid, she couldn't afford these services. And so as a result of that, my mother would miss her mental health appointments, would miss her primary care appointments. And stop taking her medications. She didn't have a prescription for her meds, and her symptoms worsened. And that is what led to her last hospitalization. But before she even went to the hospital, she had two E.R. visits. And so I had to be with her throughout the E.R. visits, throughout the hospitalization. It takes a huge toll on the person with mental health care conditions, but also their family, their support systems. It's just it's a lot. And so being able to have now my mother have these home health care services where care home attendants make sure that she, you know, accompanies her to her appointments because as a result of my mother's physical health and mental health care symptoms, she's not able to leave the house by herself. So she really does depend on that support. And, not only to make, as I said, her appointments, but also for screenings, for cancer screenings, all of these things that help someone stay healthy and live independently. My mother lives alone, so she's able to stay at home, live independently, which is exactly what she wants. And so, very grateful for Medicaid for that. But really want to say here is that Medicaid has an enormous positive ripple effect, because it's not just my mother who's benefiting directly from Medicaid and the services that it provides and pays for. But I'm benefiting from that, like as a caregiver. I get to focus on my family, my son, my job, my life here in DC. And she gets to stay healthy and thrive where she wants to be. And so I just want to kind of make that point that it's really not just the person, but really these ripple effects that Medicaid has are immensely positive. I think that's so important. It's not just about the individual. It's not just about the support system. It's a community impact, that so many of us rely on, that we all benefit from, and you know, I'm sure, Sue, this mirrors many stories you hear all the time from folks in Minnesota. Can you talk about what Medicaid means to people with mental illness in Minnesota? Absolutely. First of all, Minnesota really has a wide array of services that are covered under Medicaid. So not only your basic, you know, medications and therapy, but also things like crisis services, sort of community treatment, in-home services, rehab services. We have Medicaid waivers that, you know, do that kind of intensity as well. And even actually housing stabilization services for people with serious mental illnesses can be paid for under Medicaid knowing the importance of having, you know, secure and safe housing. So it pays for a whole lot of things that, frankly, private insurance would never, ever pay for. In Minnesota, we actually have Medicaid expansion. So we expanded it to people who are low income, childless adults. And a little over 30% of the people on Medicaid expansion, actually have a mental illness or a substance use disorder. So it's really beneficial for them. And if you think about it, you could have a young person experiencing their first episode of psychosis. They're clearly not going to be certified as disabled at that point in time. But yet they can't get the services and supports they need to get better to finish school or to go back to work. And so Medicaid expansion comes in and actually covers those really important services that help them in their recovery and frankly, getting their life back together, not changing the trajectory of their life very much. We also see a lot of parents whose children have very serious mental illnesses. Again, private insurance doesn't cover the intensity of services that their child needs or in-home services. And so they're able to get Medicaid for their child, their, you know, teenager, actually even a young child get those services. So again, we can support that child in getting better. And we hear those stories every day here at the NAMI Minnesota office. Yeah. And I think people forget the breadth of services that Medicaid offers. You know, it's often compared to private insurance, but there are so many things that Medicaid can cover and does cover that private insurance would never be able to cover. And those are things that are really important to somebody staying well in the community. So whether it's about those housing supports or, family supports, there's so many things that help people stay well and potentially get back to work, stay in school, stay independent, that are so vital. So, okay, I think we've set the stage for why Medicaid is so important to mental health and how much it means to our community. So I want to pivot a little bit to talk about why are we even mentioning it right now? Why are we doing this podcast this week? So Congress is considering some major cuts, to the federal budget, around 1.5 trillion, or up to 1.5 trillion. According to the official congressional budget scorekeeper, the Congressional Budget Office, or CBO, Congress can't reach this level of savings in the way they've set it up without significant cuts to Medicaid or Medicare, and everyone has already committed that Medicare is off the table. So that leaves Medicaid as the program to cut. Now, a reminder, this is a program that covers 40% of non-elderly adults with mental illness. So this is pretty pivotal to the mental health community. We've been pushing advocates all year to remind their members of Congress why Medicaid is so important to the mental health community. Over 90,000 calls and letters to Congress by NAMI advocates to reiterate that message, and we have to keep it going. But we also get a lot of pushback that this isn't a real threat. So, Sue, I know you follow this as closely as we all do. Why should we be concerned? Because there's no way that that particular committee can cut $880 billion without touching Medicaid. It's--there's just no other way. We've heard some of, you know, members of Congress say, well, no, we really won't touch Medicaid. We will actually focus on, fraud or abuse. But the Kaiser Family Foundation has done their research and they've said, first of all, there isn't a lot of fraud or abuse at all. Medicaid paid an estimated almost 95% properly. So the improper payment rate was 5%. And that was not necessarily fraud or abuse. It was, you know, maybe the paperwork wasn't there and they had to refile things and things like that. So you're not going to find those kinds of savings by cutting out fraud and abuse. So the only way you're going to be able to again, reach those savings, continuing a tax cut, is really by cutting either eligibility, the amount of money the federal government matches states, or services, and there's just no way around it. Yeah, the math doesn't add up. If you don't include Medicaid, significant changes to Medicaid in that there's no way to get to these hundreds of billions of dollars in savings that Congress is hoping to achieve. And I think we keep hearing, you know, we just want to reduce the federal share, to Medicaid. We're not cutting Medicaid. We're not cutting benefits to any individuals. Well, that has a ripple effect, because states have to make up that difference. Medicaid is a shared federal state program, and the federal government pays a minimum of 50% of the cost, and in some states, much more. And so if you lower how much the federal government pays, then somebody has to make up that difference. And that states. States that don't have the budget to make up that difference. So there's only a few options on the table. And I know we'll get to that in a second. And Anita will walk us through what those options are. But I think it's important to point out that NAMI recently released some public opinion polling. This is 2000 adults across the country. Different political parties, different backgrounds, ages, everything. Looking at Medicaid and, you know, what we found is that cuts to Medicaid are unpopular regardless of your political party affiliation. 78% of people overwhelmingly agreed that Medicaid saves lives by helping people access mental health care, and 85% said, that they support protecting Medicaid funding at the federal level to help people access mental health care. I mean, these are just a few of the many stats that show, regardless of your background, regardless if you use Medicaid, regardless of, you know, the political party you align with, you support Medicaid funding and you support it for accessing mental health care. So there's a lot of ways that we could see change to Medicaid. We have this big number that Congress is trying to reach. But are all of the potential changes bad for people with mental health conditions, Anita? Short answer is yes. But I think, you know, we're still-- we don't know the exact the exact policies that will be included. But we do know the proposals that are under consideration. So I'm going to talk about kind of three big categories of proposals. And touch a little bit about, how that could impact people with mental health conditions. And so the first kind of big bucket is one that I think has a little bit more broad support in Congress right now. And so that would be adding red tape for people who are already eligible for Medicaid. So in this category you have the reporting requirement. And so this means that even though you're already eligible for Medicaid, you would have this additional requirement that you have to show that you are working or engaging in some sort of community activity, or that you meet or qualify for an exemption. And the details of that aren't clear, like what those exemptions would mean. This particular work reporting requirement has been implemented at the state level already. So we do have some data about how this works or doesn't quite work. And so what we found is that work reporting requirements actually lead to loss of coverage. So people just end up losing their Medicaid coverage. Even those people who are working or maybe met some sort of exemption. And the reason is that when you add additional paperwork and you add additional hurdles that people need to jump passed, then it just gets hard. People fall through the cracks. And if you're a person with a mental health condition and maybe you're kind of struggling to navigate various health care and social systems that you need to navigate, you know, sometimes it's a monthly, work reporting requirement. You may not be able to meet that, and you end up losing your health care coverage. And there are also people who are older and are not as computer literate. So if you have a, you know, a system where someone needs to kind of enter in a computer or they maybe don't have access to internet wherever they live. So it really just adds all these additional barriers that keep people from accessing their mental health care. And so also what we found in the places where these policies have been implemented is that they're pretty costly and they don't lead to more work. So even though the intention is to cut costs and push people to work more, most people on Medicaid already work. By most people, I mean like 90% of people on Medicaid are, according to the Kaiser Family Foundation, are working or caregiving to do some other activity or have an illness. You know, so many of the stories we have highlight that because people are on Medicaid, they're able to work, they're able to stay well, and it has given them the stability to get back into the workforce, which is what people want. People want to be able to support themselves. They want to be able to engage in the community and engage and in their life. And Medicaid helps people do that. Yeah, absolutely. If I can just add, you know, the people have said members of Congress are saying, well, we won't make people with disabilities work, but I think it's really important to understand that a lot of people with mental illness have a difficult time being certified as disabled by the Social Security Administration. The latest, you know, figures is that it takes eight months for someone's application for Social Security disability or SSI to even be processed. And almost everyone's, over 70%, are denied on the first go around. And so then people are applying again or they're appealing. And so it can take three to four years for someone to finally become certified as disabled. So during that time, what do we want, frankly, a lot of young people to do. And I would also say that if we really do, and we do believe in work, we do believe it's really helpful, right? And so if we want people to work, but they're not able to get the treatment that they need in order to work, I mean, it just doesn't make any sense. And again, we've seen a lot of people on Medicaid expansion be young people who are having, you know, again, their first episode of maybe bipolar disorder or psychosis, and they're not going to be certified as disabled. And honestly, I don't want them to think that they have to say they'll never work again. I want them to say, I'm going to work and I'm going to use Medicaid to get better. Yeah, that's such a--that's such a good point. And so I think that there's just so much here when it comes to work reporting requirements. And I can talk a little bit about the two other kind of categories of changes. So the second bucket would be reducing the amount of money the federal government pays states for Medicaid. And so, Hannah, as you pointed out, Medicaid is a federal state joint program. And so the federal government pays a share, the state pays a share of the costs. And so essentially, there isn't a cap on the amount of money that the federal government pays for Medicaid, because health care costs fluctuate all the time. Populations grow. There could be a recession, a pandemic that could sort of change the amount of money that a state needs to pay for its Medicaid program. And so you don't want to necessarily cap the amount of money the federal government is contributing. That burden would be entirely placed on the states. And so there are some proposals under consideration right now that would limit the amount of money that the federal government can pay states, and that would have really bad effects for state budgets. And I'll let Sue kind of talk a little bit more about that later, but just wanted to highlight that kind of category of changes. And then the last one I want to talk about is changing the way that states can pay for their share of the Medicaid program. So states have to pay for the Medicaid program, a set percentage. And some states end up applying taxes to the health care system in their states. It could be providers or something like that. And that tax helps to generate revenue for the Medicaid program. And so there are proposals under consideration that would limit how states can pay for their share of Medicaid. And so again, that would have pretty detrimental effects to state budgets because then, you know, where is this money going to come from if they can't raise this revenue anymore? And so all these changes we've been talking about, what I want to sort of say from a standpoint of a caregiver is that I worry about what these changes mean for my mother or people like my mother. And so people who may not necessarily be able to jump through all these additional hoops and meet work reporting requirements, as I said, people who might be, you know, might not be computer literate or might have trouble already navigating the system. And I also worry about what if a state gets less money for Medicaid? What are they going to do? Are they going to cut services or are they going to limit benefits? What does that mean for my mother's health and my role as a caregiver? And so these are the kind of questions keep me up at night, but also motivate me to continue this work and continue talking about why Medicaid is important. Yeah. I mean, I think bottom line, any of these shifts would have a huge impact on the mental health community and so many people in the community, and would be dangerous, and we'd end up paying for it in so many other ways. Not only would we cause people to have worse outcomes because they can't get access to care, but then that means a lot of people delay care or stop care all together and they end up in emergency departments and hospitals, involved with the criminal justice system. You know, the outcomes that we have been trying to change for so long, that it would really, you know, take us back in time to even higher rates of incarceration, higher rates of hospitalization, and ED visits. And that's what we want to avoid. So regardless of how these changes happen, they're going to shift costs to states. If they do come to pass they're going to shift costs states. So Sue, from a state perspective, what does that mean? Well, it's really tough because all states actually have to balance their budget. So they can't, you know, be owing dollars into the future like the federal government. They actually have to balance the budget. And so when we think about the cuts being proposed on the federal level, we should be thinking about it as a cost shift. So perhaps it's cutting some of the federal dollars, but it's shifting that burden to the states. Now in Minnesota, we are already facing, in our human services and health budgets,$1 billion cut over the next four years. And if we see some of these cuts on the federal level, we're looking at losing over $1 billion every year, through those cuts from the federal government. And there is no way that our state can make that up. So they will have to look at cutting other things, perhaps education, cutting rates, cutting, you know, really narrowing the eligibility for Medicaid in order to save money. And one thing that people, I think, don't really think about is when people think about Medicaid, they think about urban centers. But we know that actually most of the people are in rural Minnesota and in rural parts of the country. And if people lose their Medicaid and they can't pay for care, we're going to see an increase in uncompensated care, especially in our hospitals and our rural hospitals are already struggling. And so they're all saying, if you cut this, we will likely close. And so then we've even further reduced access, not just for people in Medicaid, but everyone. So it is a very scary thing, frankly, that many states are looking at and they know a lot of governors have been kind of pushing back to say we can't absorb these costs. There's no way that we can do this. And so it will harm people. That's the bottom line. Yeah. It's something that states, regardless of the political makeup of a state, a state can't sustain these huge extra costs because, as you said, states have to balance their budget. And that means that something's on the chopping block. And for far too long it's been mental health care, mental health services that when you need to make up that budget gap is one of the first things to go. And so even if it's not all in the Medicaid program, making up that savings elsewhere means fewer mental health services. So it's not all hopeless. There's still a lot to happen before any of these things come to pass. And our advocates have such a huge voice. So, Sue, you are a true advocacy leader. And have done so much great stuff in Minnesota and really have helped lead this movement across the country. So what can we do? What do you recommend that we do to help stop this? Well, the first thing I would say is in each of the states, we are seeing coalitions being put together to fight the Medicaid cuts. And so please check with your state, to see what's happening there. And they're broad coalitions. We already have 150 organizations in Minnesota covering, you know, hospitals and primary care, you know, just everyone under the sun who uses Medicaid. You know, even housing programs, because, again, they know how important that is to be able to access mental health care. And then I think it's really telling your story. You know, calling your legislators, emailing them when they have town meetings to really participate, whether it's by phone or in person. Don't pass up a chance to share your story or the story of your family member. We really need Medicaid to keep our communities healthy. Yeah, and I think it's important for people to know that it's not just your members of Congress you should be sharing this with. State legislators and governors, the ones who are going to have to make up the gap, need to hear these stories, too. We need to give them kind of the full breadth of what that impact would look like and help power them and pushing back on Congress and making these cuts because, you know, states will really be caught up in the midst of this if these cuts come to pass. And we've actually had several Republicans signed on to a letter to our members of Congress saying, please don't cut Medicaid, because we know what will happen on the state level and our communities, the people we represent, will be negatively impacted. So, absolutely, you know, look at who's on the committees in your own state legislatures that have to make decisions about Medicaid and ask them to get on board in fighting these cuts. Absolutely. Good advice. As you said, this is a cost shift. We're not actually cutting costs. We are shifting it elsewhere in a way that's not sustainable. So anyone who's listening, you can get involved. You can start by calling your member of Congress, writing to them. Go to NAMI.org/medicaid and you can find a lot of data. You can find a link to our action center. You can find that polling data I mentioned earlier and so much more there. So that's your one stop shop, NAMI.org/medicaid. And you know, we hope that you'll get engaged. It's going to take all of us to fight back on that. Before we wrap up, thank you both. I'd like to ask you a question we ask that every podcast guest. This world can be a very difficult place. And it's really important to hold on to hope. So at the end of each of our episodes, we have a segment called Hold On to Hope. So I'm hoping both of you can tell us what helps you hold on to hope. Sue, I'll go to you first. Well, I think when I think of the NAMI movement, I think of this old quote which is,"we're planting the seeds of trees under whose shade we do not expect to sit." And so what I've seen, you know, over these many years is that NAMI members are willing to speak out, to fight for what's right, even if it won't impact them personally. But really wanting kind of the next generation to have a better than they did. And that's what gives me hope. I have chills. Anita? I think my mom gives me hope. Just like seeing her journey, seeing what it means when you have mental health care, it makes a world of difference for the person. I said, as for their family as well. And so just that gives me a lot of hope. There are ways to still be healthy and thrive with a mental health condition and also the power of stories. I'm always so moved when I hear people share their stories, and I'm always happy to share my story, to kind of break the stigma and just show how common this stuff is. People have mental health conditions. Everyone knows someone with a mental health condition, whether they know it or not. Yeah. And I will just add, advocates. There are people across the country who, when they realize their voice has-- can make a difference. It has an impact, and they speak up and use that voice. That's what NAMI is all about. We have these advocates who have been through so much but are willing to share their experience to, as you said, Sue, to help the next generation make it better for them. And that gives me hope every day. And what an honor to get to work with those advocates. Well, thank you both for the conversation and for all you're doing to fight against Medicaid cuts. And again, we welcome everyone to join us in that fight at NAMI.org/Medicaid. This has been hope starts with us, a podcast by NAMI, the National Alliance on Mental Illness. If you're looking for mental health resources, you are not alone. To connect with NAMI's helpline and find local resources, visit NAMI.org/help. Text "helpline" to 62640 or dial 1-800-950-NAMI (6264). If you're experiencing an immediate suicide, substance use, or mental health crisis, please call or text 988 to speak with a trained support specialist or visit 988lifeline.org. I'm Hannah Wesolowski, your guest host today. Thanks for listening and be well.
