Patrick Kennedy: Part 1: We Can Fix Mental Health Care If We Build Power

We talk with former U.S. representative Patrick Kennedy about why mental health parity still fails in practice and what it takes to make insurers and employers cover care that actually works. 

We keep coming back to one idea: real change happens when we build power and design a system that rewards early help, long-term outcomes, and community support. 
• Barriers to full enforcement of the Mental Health Parity and Addiction Equity Act 
• Why payers respond to penalties more than long-term value 
• How lobbying, regulation and legal appeals weaken consumer protections 
• Building political power by organizing families and breaking silos 
• The business case for early intervention and recovery supports 
• Why supportive housing and community services can beat revolving-door crisis care 
• The 90-90-90 by 2033 framework for screening, evidence-based care and recovery 
• Lessons from the Community Mental Health Act and the cost of dividing communities 
• Moving from over-medicalized solutions to integration, purpose and connection 
If you know someone who has a story to share, tell them to contact us at why notme.world.

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Transcript

Welcome And Show Mission

SPEAKER_01 0:06

Welcome to Why Not Me, embracing autism and mental health worldwide. Hosted by Tony Mirator. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect, and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance, and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantor. Welcome to Why Not Me, Embracing Autism and Mental Health Worldwide.

Why Parity Still Falls Short

SPEAKER_01 1:09

Welcome to our special event, Crafting Justice, Empowering Autism and Mental Health Through Legislation. Joining us today is Patrick Kennedy, former U.S. Congressman and passionate advocate for mental health reform. With a legacy of groundbreaking legislation, including the Mental Health Parity and Addiction Equity Act, he has reshaped how we address mental health and addiction in America. He joins us as he shares his personal journey, the challenges of pushing for systemic change, and why mental health advocacy is more critical now than ever. Thanks for joining us today.

SPEAKER_00 1:47

Thank you. I appreciate you having me on.

SPEAKER_01 1:49

Oh, it's my pleasure. So let's start off with this. As the lead sponsor of the Mental Health Parity and Addiction Equity Act of 2008, what do you see as the most significant barriers to its full implementation?

SPEAKER_00 2:02

Well, first, you know, there's two different approaches to addressing the problem. You know, one is punitive, you create a liability that forces payers to react and try to cover their liability by doing, you know, what is required by law. The other is to incentivize the actors, i.e. insurance, which includes the federal government and CMS is the biggest insurer of all, to do the right thing, not through a stick approach, but because it's in their self-interest from the vantage point of paying for itself. It's financially, uh, it's their fiduciary responsibility would be to do this because it's been demonstrated to be more cost-effective. Part of the reason why we need to do the kind of stick approach, the punitive federal lawmaking and regulating approach to make payers do something that is not in their financial interest, is because we have set up a paradigm where it's not in their financial interest, i.e., if they make their profits on a year-in, year-out basis, it's never gonna be an investment that they get a return on. But if the payment and insurance system was able to capture the value of paying for the right mental health interventions at the right time for the right person, then they would be doing it all day long, every day of the week and twice on Sunday. They wouldn't need the Federal Mental Health Parity and Addiction Equity Act to tell them to do it because they're all about their own fiduciary. And if their own fiduciary says, you gotta do it because it's less expensive, there's a bigger return on the investment, they would do it. So part of the thing is I feel like we're pushing the boulder up the hill because the insurance industry is enormously powerful. They've got a lot of, you know, obviously, lobbying power in DC and influence across the country.

SPEAKER_01 4:07

That seems like a huge bridge to cross. So what's the next step?

SPEAKER_00 4:12

Kind of trying to do battle with them when you're representing consumers, you know, across the board, whether it's the IDD community, the SUD community, the SMI community, who, by their very definition, are overwhelmed, you know, both by their illness, which compromises their advocacy as self-advocates, and their families' advocacy because they're so busy trying to take care of their loved ones. The notion that they're gonna be engaged in a legal process to enforce, you know, the law that was written to protect them. And as you know, that's the where the rub is. It's you need enforcement because otherwise the law is meaningless unless it's got teeth, unless it's got enforcement. So it's enough of a challenge to pass the law because the insurance industry will create, you know, levers to mitigate the impact of the law itself in terms of its definition. But then there'll be another layer that will mitigate the law's impact on them, and that's the regulatory burden. And then, of course, and then there's the legal appeals process. So, like on all three, you're fighting the most powerful industry in the country, which you're gonna lose, lose, lose.

SPEAKER_01 5:29

So, what steps do we need to take so that this becomes a winnable situation?

Building Political Power To Enforce Care

SPEAKER_00 5:35

So the idea that we're gonna be able to win in that environment is gonna be determined by how effectively we can advocate. Now, I'm not saying that, you know, we can't speak truth to power and fight power with political process. That's been done from the beginning of time. I mean, you know, you had the uh industrial revolution and then you had the labor movement. The labor movement was a reaction to the industrial revolution, which exploited people and put them in these factories and had kids in these factories and had unsafe working conditions. And the American people said no. You're gonna have to negotiate. We're gonna create this thing called unions, you're gonna have to negotiate with unions, gonna give people power to have labor be represented at the bargaining table so that you can protect that other aspect.

SPEAKER_01 6:24

So, where do you think we stand with everything that you're seeing now moving forward with what we're trying to do?

SPEAKER_00 6:31

We're nowhere near uh that point of realization where we need to organize politically to create the political power, like the unions did, to speak up on behalf of our community. Because, as I said, for a lot of reasons, none of the least of which is stigma, shame, the continued stereotypes and implicit biases that relegate these illnesses to people's moral judgments on a person because of their illness. So we've got a lot of challenges to get organized politically, and we got a lot of challenges to get organized legislatively, regulatorily, and legally. So basically, I've shown you that this is uh, you know, the rock of Sisyphus, you know, you can just keep pushing this up the mountain, it's gonna roll back down on us because we just don't have the power on all of those levels. That's not to say we don't need to work on creating that power. If I had any number of dollars from the world's, well, the United States is 478 billionaires, if they, which of course all of us have mental health and addiction issues in our families.

SPEAKER_01 7:36

Yeah. So if you could tell them one thing that would help all this, what would you tell them?

SPEAKER_00 7:42

If any of them put their money behind this, I would tell them first thing we need to do is create the political power. Because you're gonna have all the ideas in the world, but it's not gonna work if you don't align the political power to you know be institutionalized, meaning anyone running for office has to be doing the right thing because they know that a third of their constituency, a half of their constituency, two-thirds of their constituency has signed on to these basic principles. And as such, you know, basically have embedded those principles into policy and into law and into regulation. So the bottom line is we just don't have that. But we can get it. Like I am convinced as a former elected official who has run plenty of political campaigns, you could put a political campaign together that would make this the most powerful special interest in the country. No doubt in my mind. This is the most powerful because it's the most personal to every single family in America. And when it's personal in this regard, in a way that frankly, I think supersedes most other quote, special interests in terms of the power of this as an existential personal issue for the families involved, then we could smash through any barrier in our way and get what's best for our families. But so that's one approach.

Making Mental Health Pay Off

SPEAKER_00 9:10

But as I said, the other approach is which may be easier, depends, is to try to do the impossible, which is to create a new financial system which acknowledges the value, the financial value, not the moral, not the human, not the you know, altruistic benefit of good mental health interventions, the financial benefit of good mental health. And if you did that and you constructed an insurance industry that competes over who's got less liability across a longer period of time, then they'll say, well, if I own these patients and the risk that comes with them, I'm gonna do whatever I need to do to manage that risk, meaning minimize my liability, my exposure to pay more money for that risk than I need to.

SPEAKER_01 10:07

With that said, what does this whole process entail?

SPEAKER_00 10:10

What do I need to do? Well, I need to do this early intervention, I need to do preemptive this, I need to put in chronic care management that, I need to do all these other things, which, by the way, may include paying for things that aren't necessarily clinical and medical, because a lot of what we need, which frankly the parity law has been helpful to do, is to pay for those social services, those human services, those housing services that frankly get us better clinical outcomes than another pill and another kind of medical intervention. So, what would decide that is not me coming to Congress with a law and say, you must cover, you know, sober housing for people with addiction, because we know it's so much more effective than paying for a whole lot more rehabs in terms of the longevity of people's sobriety and the stability for them in their lives in tackling a very chronic and insidious illness. If you've got stable housing and supportive housing and by the way, recovery community organizations, by the way, all of which cost a whole lot less than our current medical paradigm to address addiction. You know what? I wouldn't have to scream at the top of my lungs for the payers to do this, because they'd be saying, oh, that's cost less than the current model of continuing to cycle people in and out of detoxes and emergency rooms. And by the way, when you add the cost of our criminal justice system to that, this thing is not even a close call. So I guess what I'm saying in an overarching way is that there are a lot of things that we've got to do. All I want anyone to know is that we know what they are and we do them. It's a matter of political will.

SPEAKER_01 11:57

Can you expand on that political will and how you see it?

SPEAKER_00 12:00

That political will is not just directed to Congress and the regulators. That political will can be amongst the payers, influence the payers. It can be political will to force the employers to use their power as the major payers. They are the payers. The insurance industry is really taking orders from the people that write their checks, which, you know, of course, the employers. And if the employers say, God, this is crazy the way our premiums are going up every year. And all we get is they're managing the chairs on the Titanic. And can't these insurance companies come up with a better mousetrap here? This is just silly. And they might at some point break and say, God, I can't be cutting benefits. I'm not going to get the employees I want. They're not going to be healthy the way I want. Their families are not going to be healthy, which means they're not going to be present on the job as productive employees. If I don't address this, and the way to address this is not to ratchet down on what's covered. The way to address this is to pay for what works and benefit from those interventions. That ultimately is another political route. And of course, most people think politics, they think my member of Congress, my governor, my elected. There is another political power, which is, you know, the payers. And by that I don't mean just the insurers. I mean the people they work for, which is the major employers, and in turn, the investors, investor community.

SPEAKER_01 13:24

So yes, that makes total sense.

The 90-90-90 Plan For 2033

SPEAKER_01 13:27

Your call for a 9090-90 goal by 2033. Can you explain to our audience what the 9090-90 is and what legislative policy or framework do you think that's essential to achieving this target?

SPEAKER_00 13:44

So, you know, one thing I noticed after, you know, 30 years of advocating for mental health and addiction is that we as a community weren't organized. Going back to my point that we need an AFL CIO. And if you're a Republican, you need a Chamber of Commerce or a League of Conservation Voters if you're an environmentalist. Meaning we need to get our act together because we're not organized. And if you're not organized, you don't pack a punch, you have no power because you're operating on 15 different advocacy points as opposed to one. And you diminish our collective power. And so one thing I thought we needed to do is in order to coalesce everyone, we need to coalesce both the psychiatrists, the psychologists, the mental illness community, the addiction community, which by the way is siloed. And you needed to also frame what everybody is for so that we can get everybody on the same sheet of music. And what I did was just say, hey, what has worked in other major public health challenges that are stigmatized. And I look back, the most notable is HIV-8. And when they were beginning their fight, they said, you know what? Within 10 years, we want 90% of Americans screened for HIV. We want the best interventions that are evidence-based to be uniformly and universally uh prescribed, as protocols that are common, not patchwork quilt. We want everybody that's evidence-based. And we want 90% to be able to live with this condition, even if it's a chronic condition for the rest of their lives with stability and health, you know, absence of disability. That was HIV-HIDS. And guess what? We can use that same model. We want 90% of Americans screen for mental illnesses, for addiction, for intellectual and developmental disabilities. Why is that so outrageous to say we do it for cancer, we do it for cardiovascular disease, we do it for eyesight, hearing, scoliosis, everything. But we don't do it for the brain. It makes no sense whatsoever.

SPEAKER_01 15:57

Yes, if you look at HIV AIDS, that was what, 40 years ago? So with all the technology and all the information that we've got now, there is no reason why we shouldn't be doing a lot more for those with serious mental illness.

SPEAKER_00 16:13

We can do it today because you know, the old tools of having 25 pieces of paper fill out 1,500 different questions in order to screen someone, those days are gone. We're now in the world of AI and technology. There's so many ways that we can now triage and identify who has what, what they need in a way that automatically not only can help us screen more effectively for who's got what and how to best treat them, but that diagnostic tool algorithm is going to frankly also give us what's the algorithm that's gonna produce the best results for that person with that level of disability, that risk profile, that diagnosis, what's gonna produce the best outcomes for them. In other words, bringing kind of evidence base, evidence being what works and shown to work in terms of producing the best outcomes. That can be done in no time. And then the final thing is, you know, supported in recovery. That's gonna take a revamping, again, as I said, on the whole payment paradigm of paying for longer-term outcomes, that's gonna result in how do we build, which we don't have, a recovery kind of model of care in this country, where we pay for the supportive housing, the support of community organizations, the um, you know, the peer supports, all of those things, which whether you have an IDD, whether you have, you know, addiction or an SMI, you we all need the same things. And frankly, this is an opportunity for us to circle the wagons so that we're all not fighting our own battles. But frankly, whether you have Parkinson's or Down syndrome or autism, where you have schizophrenia, uh, alcoholism, other forms of addiction, you know what? We all need supportive housing to varying degrees. We all need recovery community organizations to varying degrees. We all need, you know, each other. And if that was the frame, then we would be going to the hill and we'd be going to other places of power to influence together rather than separately. And if we went together, we'd be a lot more effective.

SPEAKER_01 18:31

That is so true. How many times have we heard that there's strength in numbers? Now, let's go back in time a little. It's always said that we can learn by our history, learn by our mistakes, then use that to change things so that we can grow.

What History Teaches About Community Care

SPEAKER_01 18:48

So let's reflect on the Community Mental Health Act of 1963, signed by your uncle John F. Kennedy. What lessons do you think we can learn from its partial implementation to better fund and sustain community-based mental health care today?

SPEAKER_00 19:06

Well, he had the paradigm back in 1963 when he signed that bill, which was the last bill he signed. And part of the reason it never was realized is that it was the last bill he signed, and then he was assassinated. And then when the Congress took up the creation of Medicare and we built a Medicare and Medicaid system into law in 1965, there was uh a decision to separate people with intellectual disabilities from people with affective disorders. So again, the dividing of our community. And so what ended up happening is we did create this whole group home community-based port of infrastructure for people with, you know, IDD, as imperfect as it was, it was created in kind of consistent with President Kennedy's vision. But what wasn't done is that was not replicated with people with schizophrenia and bipolar, and frankly, in a like-minded way, but probably in a differentiated way, but in the same manner, people with SUD substance use disorders. So all three separated groups, all as I just mentioned, uh need the same things. They need independent living, which involves both not only the clinical, but the social and the spiritual, which is, you know, the the human connection and the vitality and the purpose, all of which comes from supportive employment and and community engagement. So that and that matters for someone in recovery from addiction, just like it matters for someone in recovery from schizophrenia, like it matters for someone um who has a developmental disability and has been barred from you know participating in our economic system uh and our society.

SPEAKER_01 21:01

A lot of things that you just brought up are very, very valid. I'm willing to bet that a lot of people do not realize that some of the issues that you just brought up are things that people have to live with on a day-to-day basis. With that said, what are some of the things that we can do to make this a better situation for our communities?

SPEAKER_00 21:23

So integration and um connectedness is the key for all of those communities. So uh John F. Kennedy got it when he said uh you know, people with intellectual and developmental disabilities, and I think in turn, people with uh severe mental illness and SUD, if I were to add a modernized version of what he said, he said, need no longer be alien to our affections, which is so beautifully put, because we're still dealing with uh the alienation and marginalization of all of these communities. Or he said, Beyond the help of our communities. Now that's really profound because he didn't say beyond the help of our pharmaceutical companies, although we need better therapies, beyond the help of our psychiatric hospitals, yeah, we need more beds. You know, we need or beyond the help of our psychiatrists or psychologists. Frankly, we need more of those. But he said communities. So he wasn't just talking about these different kind of trade groups, you know, therapeutic interventions. He was talking about the whole nature of community, which means everybody has a stake in this. Uh, you know, the people who were you know care about housing, the people care about employment. This is about everything. And that was profound. And we still haven't gotten that message as I we're still grappling with the fact that these conditions aren't just satisfied by some bureaucratic infrastructure and reimbursement model through the medical system. We've over-medicalized the solution. It involves a much broader comprehension of what is important to people. Regardless of what their particular challenge is, they're all people. We're all people. We're human beings. We need um that totality. And if you're denying people, you know, social connection and supports, whatever the challenge

Integration And Belonging As The Goal

SPEAKER_00 23:23

is, you're not going to be able to be successful. So that was where JFK, um, Community Mental Health Act really was so powerful and unfortunately didn't survive uh him the way we should, you know, looking back on it, we we would have hoped.

SPEAKER_01 23:38

Well, this has been an incredibly engaging and insightful conversation, covering so much ground that I've decided to turn it into a two-part series. I'm going to wrap it up here and pick it back up tomorrow. Thank you so much for your time and diving deep with us. Your input has given us more than enough to create two compelling episodes.

SPEAKER_00 24:01

I really appreciate your offering me a chance to just uh repeat what I've heard from a lot of really smart people and uh knowledgeable people. And it's the benefit that I've been given by dent to my family and experience in life that I get to hear all of these different perspectives and formulate them. And I think I have an opportunity to kind of help formulate and crystallize them and give other people the benefit of the insights that have been given to me because I've got all these people channeling these ideas into my brain.

SPEAKER_01 24:33

I think you're being a little modest there, but I really appreciate this and we'll continue this tomorrow.

SPEAKER_00 24:39

Well, we ought to keep going. Thank you so much, Tony.

SPEAKER_01 24:42

It's been my pleasure. Thanks again.

Two Part Series And Listener Call

SPEAKER_01 24:50

Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at why notme.world. One last thing spread the word about why not me. Our conversations, our inspiring guest, the Joe. You are not alone in this world.