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Equitably Financing Coordinated Specialty Care: St ...
Presentation and Q&A
Presentation and Q&A
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Video Transcription
Well, hello, welcome and thank you for joining the third National Conference on Advancing Early Psychosis Care in the United States presented by SMI Advisor. I'm Ted Lutterman with the National Association of State Mental Health Program Directors Research Institute and I will be moderating this session today. I'm pleased to moderate this session on Equitably Financing Coordinated Specialty Care Strategies for Sustainability. Now I'd like to introduce you to the faculty for today's sessions. Today we have former U.S. Representative Patrick Kennedy, Mrs. Heather O'Donnell, Dr. Mark Fagan and Dr. David Shearn. I'll give a brief introduction of them before we start the session. The former U.S. Representative Patrick J. Kennedy was the lead author of the groundbreaking Mental Health Parity and Addiction Act, the federal parity law, which requires insurers to cover treatment for mental health and substance use disorders at no more restrictively than treatment for illnesses of the body such as diabetes and cancer. In 2013, he formed the Kennedy Forum, a nonprofit that unites mental health advocates, business leaders, and government agencies in support of mental health equity and works to advance evidence-based practices, policies, and programming around treatment and recovery. In 2015, he co-authored the New York Times bestseller, A Common Struggle, A Personal Journey Through the Past and Future of Mental Illness and Addiction, which details a bold plan for the future of mental health in America. And in 2017, he was appointed to the President's Commission on Combating Drug Addiction in the Opiate Crisis. He's also the co-founder of One Mind, an organization that pushes for greater global investment in brain research, co-chair of Mental Health for U.S., a nonpartisan initiative designed to elevate mental health policy and addiction policy. Heather O'Donnell is a Senior Vice President of Public Policy and Advocacy at Thresholds. Heather leads their legislative and public policy affairs, a Chicago-based community mental health and substance use treatment provider. She successfully led the Illinois Early Mental Health and Addictions Treatment Act, the Children and Young Adult Mental Health Crisis Act, and several other legislative efforts aimed at improving access to care, and her expertise extends to Medicaid and affordable housing. And Mark Figg, a psychiatry doctor, is the Vice President of Clinical Operations, Youth, and Young Adult Services at Thresholds. He has over 18 years' experience in developing and implementing and sustaining comprehensive programs for youth and young adults, including youth with a history of trauma and substance involvement, emerging serious mental health conditions, and at high risk for psychosis. The final speaker, Dr. David Shuren, PhD, served as President and CEO of Mental Health America from 2006 to 2012, and is on an interim basis in 2014. After leaving the Mental Health Association, Dr. Shuren joined the staff of the National Association of State Mental Health Program Directors as a Senior Public Health Advisor. He's also has an appointment at the Department of Mental Health at Johns Hopkins University. And David's been doing a lot of work with NASHPD, with states, on first episode psychosis for a number of years. If you go to the next slide, disclosures. So Heather O'Donnell and Mark Fagin report no relationships with commercial interests or conflicts of interest. Patrick Kennedy holds stock in DynamiCare Health and HealthPoint Solutions, and is a consultant for adaptive testing technologies, DynamiCare Health, and Pharma. He sits on the Board of Directors of Axial Healthcare and Braeburn Pharmaceuticals, and he also sits on an advisory board for InterAxon use, Kagan Health, Integrated Life Sciences, All Insight, and Peer Therapeutics. Dr. Shuren co-chairs the dissemination function of the Early Psychosis Intervention Network as part of the National Data Coordinating Center at Westat. I will now turn the presentation over to Dr. Shuren. Thank you, Jed. And we're getting some background noise. So why don't everyone mute themselves, so that hopefully that'll take care of that. So what I'd like to do first is kind of go through the learning objectives, and then I'm going to do a little bit of introductory material to sort of set up the topic. And I'll be followed by Patrick, who's going to talk about parity issues and some exciting California initiatives, and then Heather and Mark will gale us with information about the great work that they've done in Illinois. So following the session, you should be able to describe the major features of the Federal Mental Health Parity and Addictions Equity Act and how the law can be used to seek equitable coverage for CSC services. So really important theme is that we passed the law, but as we realized, I think then there's still a lot of work to get it fully implemented. You'll also be able to explain the process of developing and implementing legislation that requires coverage for CSC services in both the public and private insurance markets. And you'll be able to effectively argue that CSC services are affordable relative to other commonly reimbursed medical procedures and certainly meet the conventional standards for cost effectiveness. Next slide, please. So the introduction, and this is not going to be news to anyone on attending the conference, but coordinated specialty care services are an evidence-based practice that has been shown to be effective in serving individuals experiencing a first episode of psychosis. And we've known that we have had a strong international literature for years, and we've had our own STEP program and the RAISE initiative, and it's been demonstrated again and again to be effective for working with people who are experiencing a first episode of psychosis. But unfortunately, ordinary insurance payment systems are not adequate to cover the full cost and intensity of services. And a recent study done by Tom Smith and colleagues in New York demonstrated that even in the rich New York Medicaid system, that only about 50% of overall program costs could be covered through insurance reimbursement mechanisms. And if we were looking at commercial insurance, that figure would be much, much lower. Next slide, please. So to deliver these services at fidelity, we really have to have supplemental grant funding. And so that comes typically from either state general funds or from the Mental Health Block Grant. And I think as everyone on the call knows that, you know, the Congress, following the RAISE study and some really good advocacy work that was done, has increased the block grant by 10% and earmarked those funds for CSC programs. However, relying on grant supplements or state general funds, as opposed to insurance, well-funded, appropriately funded insurance benefits, is not a fail-safe strategy in terms of the ongoing sustainability of the program. So population impacts can be compromised because without a robust benefit that's universally available, we're just not going to be able to get to all of the people who are experiencing episode psychosis. And as I said earlier, you know, the ongoing sustainability of the funding would be tenuous. Next slide, please. So the lack of inadequate insurance promises to change the life of a person with these serious mental illnesses is not acceptable. It arguably violates, and I think Patrick will talk about this, the Parity Act that Patrick championed. Patrick will discuss the implementations of inadequate insurance coverage in the light of the parity law. Mark and Heather, as I mentioned earlier, will showcase groundbreaking Illinois work in terms of passing a statute that will assure cost-based reimbursement of CSC services, save supported education and employment. And then after those presentations, I'll return, briefly discuss Medicaid strategies that can be used to fully fund the program and provide some information about costs and benefits. So that sort of tees up the issues in terms of working on a workable, full-cost coverage through both commercial and Medicaid insurance for these programs to assure their sustainability. And with that now, I'd like to turn it over to Patrick Kennedy. Patrick's going to talk to us about the parity law and some really exciting work in California. Thank you so much, David. I appreciate your longtime advocacy in this space. I can recall your strong support for our effort to pass the Mental Health Parity and Addiction Equity Act when you ran Mental Health America, which was a huge support for the advocacy community to coalesce around supporting a bill that did nothing more than demand that insurance companies cover mental illnesses, and that includes addiction, no more onerously than they cover any other chronic illness, whether it's inpatient, in-network or outpatient in-network or inpatient out-of-network or outpatient out-of-network or pharmaceutical benefits or emergency room benefits, and at the primary, secondary, and tertiary levels of care with no higher co-pays, premiums, deductibles, or lower lifetime caps. So I'm giving you a very clear picture and everyone's listening that this law, along with what is known as the non-quantitative treatment limits, which is really what is being discussed here, and that is the ways that insurance companies have continued to minimize reimbursement is through this insidious process of underfunding the profession so that there are less people in-network and imposing all kinds of pre-authorization and concurrent review and retroactive review medical management practices that severely restrict care at a much higher rate than they would other forms of care. But what they feel as though they got around were what are known as the quantitative treatment limitations. As I said, the premium co-pays, lower lifetime caps. The real next frontier for us in this effort are these kind of more insidious ways that they limit care. I might add from the get-go that I encourage all of you to read about the WIT versus United Healthcare decision that just came out of the Federal District Court in California. There was a judge named Judge Spiro who wrote an incredible opinion, which I feel is kind of a cliff-note version as to how difficult it has been to get insurance companies to follow the law. And essentially, it's a forensic description of all the ways that they avoid complying with the law. But the good news is that we had several great lawyers take this on. And I might add, because there's no punitive damages, it's very hard for us to get the kind of plaintiff's bar on our side, which I think would really change the landscape and would have much earlier if insurance companies knew that they had a real liability if they never followed the law. But because they know that their only liability is to be out-of-pocket, what they were originally obligated to pay, then there's really no loss to them in a cost-benefit, risk-benefit way because they really have no liability from the vantage point in addition to the financial side, which is just cost-deferred. They really do not have enough people who would want to sue anyway because, of course, these illnesses are so stigmatized that to get people to even log a suit is a huge challenge, which most people don't do. So many people revert back, and to David's original points, they end up paying more out-of-pocket. And that's the kind of situation we're in today. So I'm going to kind of leapfrog to my conclusion so that those watching can get the nub of what I want them to do. And that is, if you go on the Kennedy Forum website, the Kennedy Forum website has something called Parity Track and Parity Registry. And Parity Registry is another word of our website that also is called Don't Deny Me. And so what I've really been interested in doing since leaving Congress is to structure a process of holding insurance companies accountable. And the way that I've sought to do that is to get analytics on the scope of parity violations in every state based upon what Millman's study did, which was analyze a 46 million payer claims data analysis of all insurance companies nationwide. And that revealed enormous disparities in the access and affordability to care for people with mental illness as compared to people seeking care for other illnesses of the body. And I want to thank Matt Bowman, who has a family member with schizophrenia, for funding that. He was very successful and decided to put his philanthropy around helping to enforce parity. God bless him for that. One of the things we're missing in our advocacy movement, which is another plug for everyone watching, is that we need you to be politically involved. We need you to reach out wherever possible to inform people that we have a lot of areas of philanthropy, not just in helping to solve the day-to-day problems of these budget gaps, but also to fund systemic policy changes that, frankly, will address the fact that you shouldn't have to be going to beg and borrow for money that is obligated to you under federal law. And so if you read the WIP decision, I will say there are some positive momentum. You're going to hear from Heather and Mark, and I thank them for their great work in Illinois fighting to get coverage within private insurance for coordinated specialty care. But I would say that that model is going to be helpful not only for people living in Illinois, it'll be helpful for people around the country. And the reason I say that is, as a former state legislator, I often looked at other states who had model bills to introduce into my state, which at the time was Rhode Island. And I married a Jersey girl. That's why I'm now living in New Jersey. But we also have other state models like 855, for those of you who are in California, like Proposition 63, for those of you who are in California. These are models that have created whole new funding streams, as in the case of Prop 63. And in 855, which was just signed by Governor Newsom, it really puts more pressure on payers to be held accountable. And the way that the law does it is it opens up insurance companies' basically book to allow regulators to really determine whether in practice they are adhering with the parity law. And of course, they expand their state version of parity, which goes a long way to strengthening the federal implementation. I say all this as a way of saying that this is both a federal and state effort. And what you're learning about in the course of this meeting here is the advocacy portion. And I wish I could say that we passed this federal parity law because Congress woke up one day and said, wouldn't it be good to no longer discriminate against the brain? But that's not why we passed it. We really passed it because I was related to someone really powerful, my late father, Senator Edward Kennedy, who got me to talk to his best friend, Chris Dodd, who happened to be chairman of the Banking Committee when the markets collapsed in 2008. And Chris Dodd became the most powerful member of Congress in Washington, D.C. And because he was a family friend, and I asked him to help me pass the Mental Health Parity and Addiction Equity Act, which was H.R. 1424, he said what he would do is write the whole Economic Stabilization Act, which bailed out our nation's banks to the tune of $800 billion into the parity law, thereby guaranteeing its passage. I say that as background for all of you to illustrate that we don't really have a good head of steam in terms of getting this federal law implemented because most people don't even know it was passed to begin with. It wasn't the result, like the Civil Rights Movement, of a concerted national effort to light up the board and say to people, this is a new way of us understanding and seeing the world. We're no longer going to allow these illnesses to be discriminated in. I wish that was the reflection of the public will and the Congress. It wasn't. So what we ended up having was a very lackluster implementation and oversight and enforcement of the law. And that's why we're still struggling to get the law passed. But as I said, there are decisions like the Witt decision, which I hold to a kind of akin to the Brown v. Board of Education case, because what it does is it sets a standard that separate and unequal is no longer equal. And the payers who think that they can carve this out and treat it differently and discriminate against these illnesses in a way they never would if they were cancer or cardiovascular disease or diabetes, that has to end. And I'm giving you all of this as a way of giving you kind of what the narrative is for us to push back. What I would encourage and follow on to this meeting is when you go on the Kennedy Forum website, you can also learn in your area, wherever you live, wherever you travel, wherever you will practice that there are state insurance commissioners and their state attorneys general, and they all have to be held accountable. And frankly, in my experience in politics, you don't have to have a whole lot of people to go to their offices and say, there is a violation of both state and federal law here. Here's our experience. And by the way, you don't have to have the whole thing mapped out chapter and verse like a lawyer would. All you need to do is have your own experience of the discrimination and couple it with our Millman report, which is on the website, which will demonstrate that in all these states, there are huge disparities, some more than others in various areas of those six buckets of coverage. And if you can illustrate that this one area, then they'll have to take a look at it because if there's smoke, there's probably fire. So I would just finally say that in my view, the big narrative here is treating this cause of parity and equity as a civil rights fight, because it's really about treating people with equal dignity, in spite of where their illness is derived. And I also see the fight for greater neuroscience, which clearly is a part of this whole equation and is the reason why I'm so proud to be affiliated with One Mind, which I also encourage you to Google One Mind. They have the Aspire program, which as has been talked about by Ted and David is kind of an offshoot of this pro dromo national pro dromo longitudinal study, which found that no surprise, which all of you are specialized in that early intervention for psychosis really is got huge long term benefits in terms of interrupting the pathology of the illness and reducing as a result, the lower the long term disability of people who suffer psychosis. Why in the world we would ever let people suffer from many psychotic breaks before we wrap around this coordinated care program that all of you are working so hard to forward is beyond me. But if you were to ask me as an advocate, what are like two or three things that I would do to change the whole trajectory of mental illness and mental health problems in our country, I would put this at the top. This is like a sure fired way of changing our criminal justice system, it'll be changing our homeless problem, in addition to changing the multiple tragedies in people's lives around the country. So God bless all of you for the work that you're doing. It's so valuable. And I thank you for all that you're doing and look forward to being a resource to any of you who want to connect with us either at One Mind or at the Kennedy Forum if you're interested in being part of the fight. And that's what I'm talking about is we need to create an NAACP for mental health. We have to take this to the courts. We have to take this to the states and to the federal government and fight, fight, fight, and get people the dignity of the proper care, the proper time for the benefit of their whole lives, which instead of being lived with in disability can be lived with an optimal independence and fulfillment. And thank you so much for allowing me to be on. And now I'm happy to turn it over to great champions for this cause, who, as I said earlier, have demonstrated a huge success in Illinois getting private payers to do this. And as I said, this can be a real model for all of us around the country. So to Mark and Heather, thank you, and I'll turn it over to you. All right, thank you, Patrick. I really appreciate that call to action and we're gonna take it a little bit from there. And I'd just like to also say how really great it is to be able to connect with so many colleagues and leaders in the sector of work, albeit over video and chat, but a lot of the folks here that we've learned from over the years and continue to learn from. Look forward to seeing some of you in person soon. So for those of you that are connected in the chat, please go ahead and discuss some of the funding challenges that you all experience on the ground in providing early psychosis work. And also more importantly, talk about some of the ways you make it work. So get some of the conversation going. We'd love to hear a little bit about that and share some trade secrets that you all are working with. As you heard before, I oversee all the youth and young adult services at Thresholds in Chicago. We affectionately call that YAYAS, so you can advance to the next slide. And so while I oversee the program and Heather oversees all of our advocacy and public policy work. And so we work very closely together to solve finance and programmatic policy and other kinds of changes through partnerships and advocacy and legislation. And so I'll sort of start with our program-based challenges around funding, and then Heather will pick up with some of the tips in using legislation towards solutions. So to understand the premise of some of our legislative efforts, let me just give you a two minute tour of some of our services. And as you can kind of see here, our YAYAS consists of a few main divisions, all with sort of the common denominator of specializing with young adults that have serious mental health conditions. We have community residential and apartment living for young adults connected to many different sectors, including the child welfare sector, with a high school parenting teens program, childcare, research evaluation and training, including providing training across the country around a number of different topics related to work with young adults. And so as you can see here, our emerging adults division provides kind of a continuum. And so it includes our coordinated specialty care and clinical high risk teams called MindStrong, which you see on the right. And then we have our sister program called Emerge for young adults with varying mental health conditions outside of the early psychosis range. So these programs are both co-located in Chicago and in the Western suburbs of Chicago. So both MindStrong and Emerge teams are multidisciplinary with a lot of the same components as you can sort of see in the middle, things that you're pretty familiar with at that point. You can go to the next slide. And so as many of you are very familiar with early psychosis services, our Emerge program looks somewhat similar, but has a different focus. It's sort of a combination of what some of you might know in a traditional assertive community treatment team that you might see for work with adults. But having a very young adult multidisciplinary approach along with some of those coordinated specialty care components. So all of these things are sort of tied in and kind of taking a young adult focus. And we sort of value the concept of not just recovery from serious mental health concerns, but also a real discovery oriented approach. So working with young people that are still in that self discovery mode of understanding who they are and providing that self identification and development over time. And so Emerge can be seen as sort of a sister program to coordinate specialty care and maybe a step down and a step across for young people experiencing symptoms of psychosis. And those two teams work very closely together. So the sisterness kind of, if sisterness is a real word, the sisterness between Emerge and early psychosis programs kind of matters for how we constructed the legislation to include both of these kinds of services that are very much joined at the hip. And so both of these service lines take Medicaid as well as commercial insurance, as well as private pay. So let's go on to the next slide and we can also start the poll on there. And so for the poll, we'd like to hear a little bit about and understand your involvement with commercial insurance use. So let's see, do we have the poll going now? Let me take a quick look on there. Okay. And so for the poll, we kind of want to get an idea of how many of you all are utilizing commercial insurance as one of your payers and how many of you aren't doing that at all but would like to. And then maybe how many of you are sort of fully sustained by mental health block grants and other ways where you don't have to bill for service and how many of you want just absolutely nothing to do with commercial insurance coverage. So just checking to see if that poll is up and I'll give you all a chance to respond to that while I talk through sort of this slide with you. Okay, so some of these commercial insurance challenges are ones that many of you may already experience if you are working with commercial insurance. But some of the things that we run into is we know that commercial insurance generally only allows for billable services through licensed clinicians. And so we know that that presents a challenge in finding folks that are able to work in this field and also creates a lot of inequities for having folks that are working and very adept at working in this career level, but aren't necessarily licensed folks and as a result, aren't able to work with some of the commercial, with folks that have commercial insurance. So it's sort of a chicken or an egg sort of situation because on one hand, if you're providing commercial insurance-based services, you need licensed clinicians, you need to get them without necessarily having that experience before. But then on the other hand, you can't bring in people that are willing to learn for that experience because they aren't able to provide those services to licensed folks. So that's just one of the challenges that we run into. And as we all know, there's also a lot of uncovered services by both commercial insurance and sometimes Medicaid, which includes a lot of the outreach and education that we find to be so vitally important to our young people and families to learn about the services, to understand signs and symptoms and get into that service. The support employment and education tends to go uncovered and it's also uncovered in most Medicaid venues. There are some ways to work around it, but generally that's the case. Case management is typically uncovered in commercial insurance, peer supports as well, and socialization activities, travel, all those sorts of things. So what we know about that is especially for young people that are really stretched and need that support for education and employment, they aren't in a position where they're able to get a lot of those services unless there is a payer for it. And so it really is troubling for young people that maybe don't have a safety net and need some of that early psychosis treatment that we're able to provide. There's a lot of financial challenges for the families, of course, not getting other disciplines reimbursed as we had talked about before. And then also, if you're an organization that is providing some of these services and a family can't afford it, do you write off those services? Do you do sliding scale? How do you balance those out-of-pocket costs when maybe you don't have the block grant to fall back on at the same level? So a number of those things, in some venues, especially for young people that are under 26, if they have commercial insurance, they can sometimes also get Medicaid as a second payer behind that, that can help to afford for some of those services. So we also have some of those financial incentives toward clinical versus non-clinical services, meaning that as you're building a program or operating a program, a lot of times there'll be more incentives to provide those clinically-based services. So be it therapy or psychiatry, rather than those other services that we know are so vitally important to this work in early psychosis around peer-based supports, around support employment and education, of course, that outreach and community-based services. A number of things around documentation disconnects when you're working with, let's say, multiple payers in commercial insurance having different codes that you have to use and then different codes for Medicaid that you have to use as well. Productivity, arm wrestling sorts of challenges where, especially for organizations that need to have a certain amount of billable hours in order to sustain, we're dealing with a position where folks need to lean on those billable services that often don't accompany a lot of those other services that we really need to do that might be traveling to somebody's house or it might be having those quick phone calls to check in or those texts to prompt that you can't bill for. And then finally, single case agreement headaches. So sometimes when you're working with commercial insurance and you're working with one at a time that what they are able to provide might be different than another commercial insurer might be able to provide and so on. And so really kind of dealing with the authorizations around that, counting the amount of services, all of those things leading into the reasons why we really moved into trying to find some legislation that would smooth some of these things out and find affordable ways to manage these services. I'm gonna turn it over to Heather, but I'm just checking back on the poll. I'm not sure if the poll had gone up for folks or not. It did go up, Mark. I was kind of troubling with it myself. So we've got 52% reported that they are currently billing commercial insurance. 26% said they're not billing commercial insurance, but would like to start. 11% said they're fully funded through grants, like the block grants and state grants. And then 11% reported that they are not interested in trying to work with commercial insurance companies. Gotcha, all right, perfect. So we'll keep going along those lines. And so I'm gonna turn this over to Heather to talk a little bit about how we use the advocacy and legislation to partner around really advancing the narrative and affording these services ongoing and sustaining them. Thanks, Mark. It's really great to be here with everybody. And it's such an inspiration to be part of this panel. I've been listening to Patrick Kennedy since I have been in my role. And the Kennedy Forum Illinois has been quite a force in Illinois on parity issues, as well as the legislation that I'm gonna talk to you a little bit about today. So basically, I'm just gonna tell you a little bit about what we were able to accomplish in Illinois over a long period of time. But we're really excited about what we were able to pass and are starting to begin implementation on two major bills. One is a commercial insurance bill that requires coverage of coordinated specialty care. And the other bill is a Medicaid bill that requires a team-based coverage of a team-based treatment model that encompasses all of the hallmarks of coordinated specialty care, but is broader and treats all mental illnesses for young people who are in the early stages of a mental illness. So I'm really just hoping that this will help for others across the country that are working on various iterations of what we have been working on so that we can begin to knock down the dominoes that get in the way of access to care. To me, early treatment with respect to a mental health condition or substance use condition is a no-brainer, but our system is not set that way and doesn't embrace it. So the bills that we passed really were trying to address that. And these are just the principles that are sort of my mantra. Passing any kind of legislation or doing any kind of advocacy takes a lot of persistence. It takes a lot of perseverance, and it takes a lot of work. So my personal view is that you should just be bold because it takes so much work to pass a bill, no matter if it's small or large, that fiddling around the margins sometimes is necessary and needed, but bold action, you can get bold action done. Everyone in the country, most policymakers at the state level and the federal level are talking about how to address our state mental health crises and our national mental health crisis, as well as our longstanding substance use crisis. So these are not partisan issues, and we just have to bring them to the forefront. Research and data are essential. National research is important, but also research and data from your own organization. I have worked for hours and hours with Mark and his team and others nationally about collecting data that supports coverage of coordinated specialty care and team-based treatment models. You cannot do effective advocacy typically on your own. It does require a village. We put together a coalition specifically for pushing huge systemic legislation, and it has been invaluable. I think it has also been really empowering for other advocates, and it's been fun to see people get involved in advocacy who've been involved before for certain, but just all pulling together to try to move some pretty significant legislation has been very impactful. And anytime you're working on legislation, you can't let perfect be the enemy of good. You have to propose something that is bigger than what you think you can get passed because you will always have to negotiate. It's very rare that you can pass what you actually propose, and you have to realize that you're gonna have to give something up in the negotiation process. And there's nothing wrong with that. That is progress. And as I said before, it's all about persistence, persistence, persistence. Most people in the state capitol building in Illinois, they definitely know that I will be knocking on their door multiple times. Even people who aren't typically our allies have become our allies and our champions because we have spent a lot of time in district meetings and with other community partners talking to key legislators. And I know that we are all so passionate and so serious about this because it is so important, but at the same time, it's also important to have fun and look back on the progress that we have made and our fellow colleagues have made across the country, really. Next slide, please. Okay, so this is sort of a timeline of what it took to pass the two bills that I'm gonna talk about in a little bit more detail in a minute. But basically, it was a four-year journey to what we accomplished. In the first year, we really started talking to the insurance lobby and insurance plans about potential coverage. That was not successful. So each time you're not successful, you have to think about, okay, what's the next step? We can't just keep trying the same thing if it's not resonating or if we're not making any progress. We did not have legislation in the first year that we were thinking about private insurance coverage for coordinated specialty care, nor did I even think a mandate would be possible. The second year, we proposed a bill that would have required what we are calling secondary coverage of coordinated specialty care through Medicaid. And that just means that if a private insurance plan didn't pay for all the components of the model, then Medicaid would be the default secondary payer. There's actually, in my opinion, there's some public policy questions about whether or not this is appropriate. It's basically taking the onus off of private insurance, but we knew that this bill would not pass, but it was a way to educate policymakers and legislators on what coordinated specialty care is and why it is important, and why it's important to have private insurance step to the plate. And in year three, we had two bills. One was the Early Mental Health and Addictions Treatment Act, which did pass, but we also at the same time had a parallel bill that would have required private insurance to cover coordinated specialty care. And we ran them parallel to each other because legislators really could understand the value of early treatment. You have every facet of society talking about the need to address the mental health crisis. You have sheriffs talking about it. You have police talking about it. You have schools talking about it. And so it just resonated to frame it as early treatment. The private insurance mandate bill did not pass. We had a subject matter hearing on that bill, which helped educate legislators on the components of that. And then in year four, we actually did pass a private insurance mandate as part of a much larger bill called the Children and Young Adult Mental Health Crisis Act. But first I'm gonna talk about this slide, which is the bill we passed called the Early Mental Health and Addictions Treatment Act. And we framed this as early treatment for young people. We all know that most mental health conditions begin in adolescence and youth. Begin in adolescence and young adulthood, but sometimes it can take 10 or more years before a person is able to actually get the treatment they need to really stabilize and be well. And that is unconscionable. So this requires the state Medicaid agency to create what in Illinois are called community support teams. It is an iteration of a sort of community treatment, but at a lower intensity level. And the treatment team model is required to be tailored for adolescents and young adults who have early signs of a serious mental illness. And it is broader than coordinated specialty care because we want it to be able to capture, we want it to be able to capture children with any kind of serious mental illness. And it is really based on the work that Mark and his team are doing around the eMERGE model that he talked about a little bit ago. And I do wanna iterate this. This was a hugely bipartisan bill. This bill passed under a Republican governor and one of our biggest legislative champions for passage of this bill was a staunchly conservative Republican. And it was related to what was happening in his community around mental health conditions. And we also spent a considerable amount of time with Republican legislators on the house side about the value of this. So we were able to pass a bill that requires new Medicaid benefits and new Medicaid spending with huge Republican support, which is a little bit unheard of in this state. So next slide, please. The other big bill that we passed last year deals with private insurance coverage, first-step psychosis treatment, as well as many other issues related to children and young adult mental health. What we learned from the first bill that we tried to pass, which was a standalone bill requiring private insurance coverage, we learned that for political reasons, we were not going to be able to pass a mandate that way, that we had to have what I call a mini-omnibus bill on children's mental health that tackled all things children's mental health, that tackled the main grant program for children's mental health, it tackled some prevention issues, and then it also tackled the private insurance mandate. We did not have insurance support for this bill. We passed it with their opposition, and that is because we were able to garner support from both sides of the aisle for the larger part of the bill. So this was a huge accomplishment. And so starting in January of 2021, state-regulated private insurance plans will be required to cover coordinated specialty for first-step psychosis, assertive community treatment, and what I mentioned, community support treatment is what we have in Illinois as well for young people under 26. Now, earlier when I said, don't let perfect be the enemy of the good, our initial bill was for anybody, but we knew we were going to have to scale back the age for which this would apply. We worked with the State Department of Insurance on medical necessity criteria and coding issues. We did have to exclude coverage of supportive education and employment because we learned that that just was not going to fly. So we get around this by requiring providers to still adhere to the fidelity of the models, but block grants and other dollars can cover that aspect of the model. And then a big challenge with insurance coverage is that a lot of staffing on these teams are not credentialable through insurance. So we got around this by allowing the team lead to basically be the credentialed person for the entire team. So that was a huge success. Next slide, please. These are sort of the lessons learned. I've gone over a lot of this, and I know we still have another presenter, so I just want to reiterate that I think what a lot of advocates are doing in other states is fantastic as well as at the national level. So we just have to keep fighting, and I think that Patrick is right. We need to make this just like a civil rights issue, and we really need to capture the attention that this, we're not going to stop until we accomplish the full system of care. So with that, I will actually turn it over to Dave Shearn, who's going to talk about some financing strategies. Dave, I think you're on mute. That's a terrific presentation, both Mark and Heather, and I think we're on the same line. I should be unmuted now. No? We can't hear you now. You can't? Okay, good. I swear, technology has just been, okay, it's just been pestering me for the last couple of days. I was just saying what a great job, Heather, you did, Mark, in laying out the challenges and then Heather in talking about how the multi-year effort was required, developing champions, being practical, et cetera, et cetera, and it really just underlined, I think, Patrick's notion, the importance of advocacy and persistence, building coalitions, and really understanding the issue from all sides. So that's a great presentation. There's a, you know, I think that as Patrick sort of indicated, this could end up being a model bill that other states could start to take a look at, and I know there's some work going on at the American Psychiatric Association around developing a model bill, and we're going to continue through the PEP net working on these. Can I have the next slide, please? So what I'd like to do briefly to preserve some time for questions and answers is just really briefly to run through some Medicaid strategies that are available to people today. Can I have the next slide? This is, you know, everything about Medicaid is complex, and this is going to be the 30,000-foot view. The take-home message is it is possible to get cost-based reimbursement through the Medicaid program for individuals who are eligible and enrolled in the Medicaid program. There are four strategies that I'm going to last my way through. One is amending an existing Medicaid program and existing Medicaid plan. The second is to use Medicaid-managed care, companies using the in-lieu-of provision. CMS has actually, the Centers for Medicaid and Medicare Services, has actually encouraged individuals to submit specialty SMI SED waivers, 1115 waivers. And then finally, the Certified Community Behavioral Health Clinic financing model really fits the CSC model well. Next slide. The next thing I'm going to talk about is amending the state plan. If I could have the next slide. Possible and supported education, and that it be covered that you can request of CMS that evidence-based practice of community support services or comprehensive coordinated specialty services be reimbursed as an evidence-based practice, and it's possible through that mechanism to have small caseloads and to be able to bill a bundled rate. So the trick here is getting the community that coordinated specialty services approved as an evidence-based practice by CMS and then use the home and community-based waiver to fund supported employment and supported education, which, as Mark pointed out earlier, are some of the more difficult aspects to be funded. Something I learned recently from our Medicaid expert is that we're going backwards. Unfortunately, we can't go backwards in time, so we need to go forward, yeah, is that the outreach and public education components of the program, which are also very difficult to fund, can be funded through the use of Medicaid administrative funds, and the nice thing about this is that these funds have a generous federal match, as I understand it, and it can be used for the entire CSC program. Obviously, public education and outreach will help both the people who have Medicaid and others who don't. Next slide, please. This is something that was used in Pennsylvania, which does, in some of their treatment programs, have access to a cost-based bundled rate because they have Medicaid managed care programs, and it's possible in this situation for the managed care program to request that the state allow it to have a bundled cost-based rate for the provision of services that are being provided in lieu of other services that will not be provided, so it's sort of like a substitute provision in terms of the use of other services, in this case, CSC services. The program costs are fully covered as an evidence-based practice, so it's similar to what we were seeing in terms of amending the state plan. It's specifically tailored for people who have first-episode psychosis, and basically, the CSC provider, the specialty provider, has to negotiate a cost-based rate with the managed care company, and it's billed on an encounter basis the same way as any other state plan modification, so essentially, you calculate the cost of the program, you estimate the number of units of service to be provided, divide one into the other, and you get an encounter-based reimbursement that can conceptually cover the entire cost of the program. In Pennsylvania, supported education, supported employment was excluded and has to be funded through other mechanisms, but that being said, they do have that, both in Philadelphia, Delaware County, are looking forward to expanding that further. Next slide, please. There are special waivers that are available, 1115 waivers, and in a letter to state Medicaid directors in 2018, the CMS suggested specifically that these waivers can be used to cover these specific types of services. It requires that the program identify and serve individuals quickly, so that fits the model very well and requires an integrated care approach, and it particularly requires that they be provided in specialty settings, and again, outreach and public education can be covered using Medicaid administrative funds, and Maine is currently working on the development of an 1115 waiver. And then finally, the Certified Community Behavioral Health Clinics, next slide, please, are actually our perfect funding mechanism. The Best Self Program in Buffalo uses this mechanism. It's currently a demonstration program in 10 states, and there's also a SAMHSA-funded grant program, which received additional funds in some of the CARES money that initially was allocated following the epidemic. It requires the CC, it nicely maps on the CSC services. It includes care coordination, outreach and public education. It requires relationships with schools. It requires active patient engagement. It's got a recovery orientation, so the CCBHC is really a perfect mechanism for funding these services, and there are a few CSCs around the country that have used the mechanism. It actually works really well. Oregon and New York have, and there may be others, but I haven't been able to become aware of them. The final two slides, before we get to the question, if I have the next slide, please, are just to sort of put the costs a little bit in perspective. So based on cost data from several sources, like that Tom Smith I was telling you about, the Tom Smith study earlier, we estimate that the program costs between $1,200 and $1,500 per client per year. You know, Patrick, I think that sort of as a long-term legacy of the stigma associated with mental illnesses, we've always had a tendency to undervalue our services relative to other health conditions. So it would cost about $15,000 a year to treat someone with these kinds of conditions, about $1,200 a month. And we do things like angioplasties, and knee replacements, and hip replacements, and never blink an eye about these procedures. They cost twice to three times as much. Now, some cancer pharmacotherapies, $30,000 to $50,000. In 2012, 12 of the 13 new drugs approved for cancer cost over $100,000. So if you put this in the context of general medical care, these are very, very affordable services. And if we could estimate the long-term reduction in disability associated with people who don't receive appropriate services, these cost figures would look even better. Last slide, please. Here, I did just some back of the envelope calculations using some recently available incidence data, both on the general population and on the Medicaid population, and taking the difference from the RAISE study between what was used, the amount of additional expense that was associated with the provision of CSC services relative to usual care. I estimated that you could cover everyone who develops a first episode of psychosis for a two-year length of stay, and add $0.16 per member per month to the average insurance premium. So the good news here is that not that many people develop first episode psychosis. And when you take this modest price and spread it over an insured population, you're literally talking pennies per member per month in terms of additional insurance coverage. So it's affordable, it's effective, and relatively inexpensive compared with many, many other things that we fund in terms of our health insurance system. So that's, I think, the end of our formal presentation. I noticed, Ted, that there were some questions and some observations that were being made. So why don't we move to discussion of the main questions right now. So, yes, thank you very much. Thank you to Mr. Kennedy, to Ms. O'Donnell, Dr. Fagan, and Dr. Schirn for that very interesting presentation. And if you've got some questions, please put them in the Q&A box. There were a couple questions or comments. One of them is probably best for our Thresholds colleagues to answer first, but their point was they have a grant for their program, but also take an insurance. How do you think about and manage all of the non-billables that they have? Yeah, it's a good question. I think a lot of folks are struggling with both the question on how to manage those things together, and then also, with some fear of reduction in grant dollars over time, where does that leave us in finding sustainability? And, of course, part of our angle on that was to work legislation in order to figure out how to cover for some of those services. But in the absence of that and how we've been doing it at Thresholds and what I've seen with a number of other providers across the country finding ways to be flexible in your payment model, so being able to provide services under commercial insurance as well as under Medicaid, and then be able to use your grant dollars for those non-billable services. We've had a number of other things. So, for example, supported employment and supported education is typically something that you can't bill for in either of those venues, but you can bill for things like community support or for case management, and a lot of times those supported employment and education staff are providing those services. So billing for those codes can help you get by in some of those areas. Same thing with peer support specialists is being able to bill for codes like community support or counseling and things along those lines when you don't necessarily have a peer support specialist line. And then, of course, you just have to kind of know that part of your operating costs are gonna be all those other socialization elements, those outreach and education elements, the travel time, and utilize your grants for that, or be able to find other means to weave that together with funding streams in your organization. It can definitely get complicated, and part of the reason why we're trying to find a way to weave through that and get affordable rates through our venues. Yeah, I think there are a couple of comments that were along that same line that Medicaid pays for a lot of it, but private insurance only pays for medication and therapy, not all the wraparound programs they offer. And so that program has to use federal grants to cover the rest. Another comment was commercial insurance reimbursement for services, particularly case management activities of daily living, the full cost of CSC isn't covered. And there was an interesting observation, I think from Randy Irwin, that talked about the challenge of funding peer services, their really low reimbursement rate, but the observation that their CSC program doesn't receive the financial benefits from the outcomes they create. So they reduce hospitalizations, but since they're not associated with the hospital, they don't see any of those cost savings to the system. I don't know if any of you have any comments on that observation, but it's, I think, an issue we've got in the mental health system. If we do well and keep people out of institutions, the program that does well doesn't get to the savings from that system. Yeah, I think one point that could be made if states are pursuing what some of the strategies Dave Shearn talked about is that around Medicaid waivers or state plan amendments to make the argument that your state should set aside the savings and put it back into community mental health and services. I don't think very many states do that. I can't even say for sure whether Illinois does that, but that might be a way to funnel the savings to the services that we're trying to expand. Yeah, I would also add that, I think that's a great point. And I would also add that when you're thinking about some of the financing for this, be real clear on how you are calculating your rates. I think what Dr. Shearn had put up there just a little bit ago are sort of what we see as average rates, and that is kind of right on. That's sort of what we're seeing, but it's important that as we're talking about it, you're not just dealing with your data, you're dealing with your data. As we're talking about it, you're not just dealing with your direct costs to your staff, but also thinking about what are those travel costs that your staff are enduring? What are those, what's the cost of supervision as well as the cost of evaluation in order to make that case? So knowing that as you're thinking about working with legislators or working within your own organization or working with other policy committees or other funding entities like insurance, you wanna be thoughtful about the case you're making both in terms of what your real costs of care are, but then also around what is it that's gonna be a benefit to them in some of the work that you're doing, because there's so many benefits in the work that goes on here. You have to have a way to both measure it and be able to talk that narrative. And so having good outcomes, being able to demonstrate costs, and being able to have that personal view is super important. I think that's it on questions. I should have a question, I guess, for our threshold colleagues. With private insurance, one of the issues different from Medicaid is there are often co-pays, and with some health plans, substantial co-pays. And so even if we've got a good parity benefit that covers the services, in an intensive program like CSC where a client could be seen multiple times a week, co-pays could be quite expensive. Have you looked at how do you keep that from becoming a barrier for people participating when they've got private insurance? That's a great question. It is not. Sadly, it has not. We haven't even started coverage yet here. But I'm glad this point was raised because as this gets up and running in Illinois, we're gonna be evaluating what some of the challenges are. And I think that's a point that not, that we haven't even thought of yet. So good point, but I don't have the answer. Okay. We're out of time. Any last words from Dr. Shurn or Congressman Kennedy? Go ahead, Patrick. No, thank you. I think this is really exciting to see the momentum we have, and I hope everyone, we can work maybe, Dave, to get some of the state-by-state breakdown of what's covered, what's possible. Implement it at some point through our parity track. We have a 1.0 in terms of how we measure each state, statutorily, regulatory, through case law. We might wanna add. It's so compelling. I might also add, I think this is an exciting time. I'm very familiar with the fact that the new administration coming in is very supportive of home and community-based waiver, enhancements, doubling the collaborative care code, reimbursement, which they've already stated they're for. We have a lot of champions for our cause who are behind the scenes, who are gonna be helping to make policy at CMS. So I hope everyone feels heartened by this presentation that this is a really possible thing, and so much in the interest of those suffering and in our country's interest too. So keep up the great work, everybody.
Video Summary
In a video presentation, former U.S. Representative Patrick Kennedy, Heather O'Donnell from Thresholds, Dr. Mark Fagan, and Dr. David Shearn discuss the challenges and financing strategies for coordinated specialty care (CSC) programs for individuals with early psychosis. They highlight the importance of advocacy and persistence in advancing legislation to ensure equitable coverage for mental health and substance use disorder treatment. They also discuss the possibilities of amending the state Medicaid plan, using Medicaid managed care companies' "in lieu of" provision, applying for 1115 waivers from CMS, and utilizing the Certified Community Behavioral Health Clinic (CCBHC) financing model. The speakers emphasize the affordability and cost-effectiveness of CSC programs compared to other medical procedures. They acknowledge the need to address gaps in coverage, such as case management, supported education, and supported employment, and recommend utilizing Medicaid administrative funds and grants to cover these services. The importance of data collection, building coalitions, and negotiating with insurance companies and policymakers is highlighted throughout the presentation. Overall, the speakers provide valuable insights and strategies for financing CSC programs and advocating for mental health parity.
Keywords
coordinated specialty care
CSC programs
early psychosis
advocacy
legislation
Medicaid managed care
1115 waivers
CCBHC financing model
cost-effectiveness
mental health parity
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
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