Tony Mantor: Why Not Me ? - Patrick Kennedy on Autism,Mental Health, Addiction, and Political Change

Starting point is 00:00:05 Welcome to Why Not Me The World Podcast, hosted by Tony Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real-life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. I'm Tony Mantor. Welcome to Why Not Me the World, Humanity Over Handcuffs Special Event. Joining us today is Patrick Kennedy, a retired American politician and mental health advocate.

Starting point is 00:01:04 He was a Democratic member of the United States House of Representatives who served from 1995 to 2011. As the youngest son of Senator Ted Kennedy and nephew of former U.S. President John F. Kennedy and former Senator Robert Kennedy, he joins us to share his journey of becoming a mental health advocate. We are honored to have him join us today. Thanks for coming on. Oh, thank you for having me. It's my pleasure. You've written a lot of bills while you was in the House. What kind of strategies went into formulating those bills to try and get them past, so the outcome is, of course, helping the people that needed. It was more driven out of first this general interest to promote mental health and addiction.

Starting point is 00:01:50 I instinctively knew that this was a marginalized population, and I definitely think that my having grown up in my family really sensitized me to that with my aunt starting Special Olympics and with my dad's work to try to build health care coverage. And in addition to the Americans with Disability Act, we need something similar to advocate for mental health and addiction. And of course, my own experience as a policymaker made me realize that we had siloed the elements of an advocacy movement so that everybody was defined by their diagnoses rather than defined by their needs. rather than defined by their needs, which frankly overlap, whether you have autism, Parkinson's, Alzheimer's, addiction, schizophrenia, and bipolar.

Starting point is 00:02:48 99% of our agenda, home and community-based care is really what should propel a more cohesive, organized, and sophisticated effort to promote a new paradigm of delivery for care. that involves the community and social supports, where frankly do more for people with these illnesses than just purely medical interventions, although the only way we pay for health care today is through medical intervention. I have to say a lot of growing up and watching my father in the Senate

Starting point is 00:03:23 and my own experience really, I think, helped me organize my thinking, which, of course, itself was influenced by having, read a lot about the civil rights movement, my dad's work on disability and health care rights. That's how I figured out this is an area that I want to make a difference in because, frankly, unlike a lot of areas of society, this is not a well-developed area in terms of a level of sophistication that is required to meet the current demands that our country has for a much better effective mental health and addiction system. And of course, I ran for office so many times. I understand the

Starting point is 00:04:11 basic calculus of how you get elected. And my wife ran for Congress a couple of years ago, and it really became super apparent to me how much we were missing in this space that she could get 100 brick layers the day after tomorrow to show up somewhere, but she couldn't get 100 of anything on mental health. to do anything for her. On election day, she had 5,000 teachers all throughout the district holding signs and passing out leaflets. Yes, it's tough to get the support sometimes

Starting point is 00:04:46 on something that is just so important. This is a bigger issue than any other issue in the country, but we have no listserv. We have no advocacy movement per se. That's what's really shaped my thinking about this, is my own experience. And then, of course, I have lived experience, someone who's dealt with addiction and mental illness, both myself personally, and within my family. And I instinctively knew, too, that there's huge shame and stigma. And of course, as I said, comparing that to historical battles

Starting point is 00:05:25 against institutionalized discrimination against minorities was clear to me that a lot of those implicit biases that you see reflected in the way that we only pay women, 74 cents on a dollar, or how people of color are disproportionately represented in our criminal justice system. And there's some obvious examples of how we have not made America whole. in terms of the way it treats everybody, regardless of sexual orientation, race, gender, so forth. I definitely knew that this issue fit in that paradigm because people were marginalized. There's no funding entrenched in the reimbursement system to take care of these illnesses. It really is quite shocking when you think this day and age, without all the new advocacy,

Starting point is 00:06:22 we wouldn't still be paying any attention to it. Frankly, the tragic increase in suicide and overdose, which is getting some public attention just the last few years. So I would say the political environment for these issues is dramatically different than it was when I was in Congress. When you was in Congress, you got several things done. How did you go about accomplishing that? When I was in Congress, I got the parity bill passed because my dad is best friends with Chris Dodd. And I grew up knowing Chris Dodd. And when we tried to get the bill passed, Chris Dodd was chairman of the banking committee.

Starting point is 00:06:58 And I got Chris with his help and leadership to include the Mental Health Parity and Addiction Equity Act into the bailout of the big banks, which, as you recall in 2008, was a must to save our economy from going into another financial great depression. It wasn't because mental health was a big issue politically that we passed this parity law that I had the honor of co-sponsoring with my Republican colleague Jim Ramstad. It was through the back door, if you will, of this other legislation that we needed to pass that I tacked on the parity bill thereby getting it to pass. Any of that sheds any light to what it's been like to try to advocate for these issues. Yeah, absolutely. Over the last 20, 30 years, the perception

Starting point is 00:07:47 of autism, mental health, it's changed. It still has a long way to go, though. There's still a certain perception that people have that is not true, yet that's what they think is true, so that's what we're stuck with. What can we do to change that so that people still have the opportunity to get help so they can get out there, work, have a family, and contribute the way they initially thought that they could? I think that we need to organize ourselves politically to get the policy changes we need. When you think about the gray, of America. You think about Alzheimer's, and frankly, you think about other communities that suffer from great disabilities. You think about all of the caregivers, predominantly women, and how this

Starting point is 00:08:39 impacts the whole family. What's missing in all of those issues is the family and the holistic approach because, as I said, we look at these diagnoses in a vacuum. We think about just the medical side. Frankly, parity, mental health parity and addiction equity act, has become a major tool for the IDD community, particularly autism, because families with children with autism need all the wraparound services. And those wraparound services are essential in the treatment, if you will, the delivery of health care to that population. So it's really been a parity that has become a really great tool for families to get what they need because the parity law highlights the disparities in access to care, the disparities in reimbursement by insurance companies.

Starting point is 00:09:42 But my point is that we all share, as I said, this need for home and community-based care, And we as a country are just going into this new space where we're sick and tired of the health care system as it currently stands, which is only focused on sick care, right? We have no appreciation or how we could deliver health to more Americans at a fraction of the current cost. We are four times higher than the next industrialized nation in terms of the cost of health care. And yet our people are going without health care. And it's too financially prohibitive. And it's the leading cause of bankruptcy. So you have to say to yourself, when are we going to fix this? It's currently money that's being eaten up in really end of the life care, end of illness care, when it just consumed so many resources. When if we could move things upstream, we could really mitigate downstream costs. And this is not just some hope or wish. This has been demonstrated by science, but our medical system makes profits based upon quarterly and yearly budgets. In other words, we don't have budgets that reflect the return on investment for a longer period of time, which if we did, we would pay for things that we don't

Starting point is 00:11:09 pay for today that would have cumulatively much bigger return on investment. The bottom line is we just need to have a more sophisticated approach. And I think that when I kept running for office, I would have certain constituencies that would support me. What they asked for, I prioritized because they were influential in my political career. What I find now with these issues is we don't have the political power that we need to get policymakers to pay close enough attention to what we need. We need as they try to make sense of all the demands on their time and energy. And so at end of the day, I really see this as a political power issue. I think Kennedy Forum, which I started on the 50th anniversary of President Kennedy signing the Community Mental Health Act of 1963, I talked all about the

Starting point is 00:12:10 community, how we have to build an agenda around a policy roadmap. But now we have to, we have to build a We have what we need to know about what works and what doesn't. Sure, we need to continue to invest in that. But now it's implementation. Now it's the time of action. How do we get this turned around so that we can get the action and the focus on what is needed? You can't get the action unless the elected officials really see the power of this advocacy world. Now, I have to say, for autism, they have done fantastic job.

Starting point is 00:12:48 that really bringing political power to bear on behalf of the autism community. It really is impressive. That said, they have a lot with the mental health community, but even the autism community doesn't always see that, just like the mental health community doesn't see how the autism community is part of our agenda. If you look at the Kennedy Center at Vanderbilt University in Nashville, they have the center for research. research around the comorbidities of anxiety and depression with autism. And not surprisingly, people with autism feel socially alienated. They are marginalized. They are bullied. And hence, they have a lot of anxiety. But when you think they must be taken care of by the

Starting point is 00:13:43 IDD system. The IDD system doesn't think of itself as a mental health system in addition to an IDD. So you can have group homes, you can have supports, but those supports do not have the insight about the mental health needs of people with intellectual disabilities because they're no different than anyone else. In fact, my aunt Rosemary, who was born in intellectual disability, had also a psychiatric condition of bipolar, which was the reason my grandparent chose to give her a lobotomy, which, of course, was a disaster, and which relegated her to really the secrecy of a condon out in Wisconsin, which was not acknowledged by my family until President Kennedy in his second year in office said to my Aunt Eunice that it was time

Starting point is 00:14:35 that the family come out and acknowledge Rosemary's situation. Ironically, that tragedy in my family sparked a movement because it was Eunice who then took that feeling of being isolated and marginalized and turned it into something called the Special Olympics, where sport was the medium by which families and athletes could feel a part of. And what a miracle that Special Olympics has been. But the point I'm making is Rosemary had both an intellectual disability and a psychiatric condition, and we still, even to this day, only focus on one or the other. We don't focus about bringing holistic care to people. Yes, I 100% agree. We definitely need to find a unity

Starting point is 00:15:26 so that everyone can be helped. Unfortunately, in our country, we live in a society. If it doesn't affect us, it's not a problem. But then when it does affect us, it's a huge problem. Congress is exactly the same way. They live their lives just like everyone else. How do we get the point across to them that this is an issue that has to be addressed so that everyone in our country can live a fulfilled life? We have to meet each constituent group on what their audiences and how our issue will penetrate with that group. It's not a monolithic message that will work with all groups the same. I will say that when I was in Congress and I had gotten a DWI and was in treatment,

Starting point is 00:16:10 And then I came back. I got a lot of my colleagues who, frankly, I'd never really talked to before, reach out to me. They had sent me notes, get well notes, and so forth when I was in rehab. And I went to their offices. They always just wanted to meet with just me. And by the time that whole experience ended, I knew dozens of my colleagues who themselves were struggling with addiction or depression, anxiety. anxiety, or who obviously had family members who struggled. I can guarantee you, none of them knew each other because no one leads with this, right? Everybody knows if someone struggled and

Starting point is 00:16:55 fought the good fight with cancer. Largely for people in recovery from addiction like myself, there's a quote, anonymity, the anonymous nature of these illnesses. And that really limits our ability to connect to others in society and also to build a political movement. So I am a big believer in the spiritual nature of anonymity. I think all I say is I'm a member of a 12-step recovery group and I'm a person in long-term recovery. I have not in that phrase, Tony said anything about what 12-step group I'm in. And so for those of my friends and fellow trudgers who are listening to this, it's possible to be political and public about our recoveries without violating the 11th tradition of our 12-step recovery movement. There's at least 28 million Americans in long-term recovery. No one

Starting point is 00:17:51 knows who these people are because they're all in church basements and they keep silent about it because they think that's the way you should do. So if you want to build a political movement, it's pretty hard to do if people aren't willing to raise their hands. And I think the shame on intellectual disabilities have been dramatically changed and I think really in large part to major contributions from people like my aunt. I don't think people really know how many other people around them really struggle. Now, you wrote a book. In that book, didn't you address some of these issues with the families and how things could be adapted to help them? With my book, profiles of mental health courage, I feature 12 people and their families. So, Tony, to your point,

Starting point is 00:18:39 the family is left out of this conversation. If we looked at the one in four, one and three, whatever the number is that they cooked up in the last year or two on how many people this affects, you lose sight of the fact that it's one and one because every single family in America has someone who's been suffering. It's just impossible. not to. We all have brains like every other organ of the body. It gets sick just like anything else. It has challenges and we need to treat these illnesses as opposed to shame people who are suffering from them. But in each of these stories, I include the family members. Because for those of us who are fortunate to make it out of the depth of despair, we're the only ones to tell our

Starting point is 00:19:26 story in a sense because if it's a story that's murky and not black and white and not crystal clear that you've succeeded, you don't tell your story because you feel that shame again. What we're missing in America is the feeling that they're not all happy ending stories, but there's some real bright spots when people are struggling, trying to, and that has to be celebrated. In this book, a lot of the people who I feature, they're still struggling. It's important that people don't feel alone. The worst thing people can feel is that there's no one else like them out there. And then they feel that desperation and hopelessness. And I want people to know that in the real world, these issues play themselves out in the criminal justice system,

Starting point is 00:20:13 obviously in the workplace, in the health care system, and most importantly, in the family, which, by the way, does not have the tools to talk about these issues because they're silence, right? There's no kind of narratives that help people come to grips with what it is to live with someone who are struggling with one of these illnesses. So everybody's affected. And I think, Tony, the way we've changed the kind of political dynamic is also to change the cultural dynamic. So the culture really still judges people. It's just very dangerous to do that and think that we can get the kind of attention because we're dismissed. and we are devalued.

Starting point is 00:20:56 And that really, through the implicit kind of, well, you're not capable. It's like what we do with seniors. So they're in the scrap heap. They're not able to contribute anymore to society. They're no longer useful. We have then, fortunately, this still is very persistent feeling, unless you're active in the workforce,

Starting point is 00:21:16 unless you're really productive, that you're somehow not worthy. One of the things I'm working on now is to try to get the ecumenical community, the faith community, to weigh in heavy on these issues. My church, the Catholic Church, has been really missing an action on helping its community of parishioners. So in my church and where I live, people know that I'm in recovery. I'm sure because people know what you're going through, what you've been through, they probably reach out to you for advice.

Starting point is 00:21:52 I am inundated, Tony, from fellow parishioners who are looking for help for their loved ones because I'm the only one they know. I had the good fortune meeting with the Holy Father a month ago, Cardinal Supich from Chicago, Cardinal Tobin, who is here in my state now in New Jersey. And they were very interested in really ramping up Way Catholic Church support lay. people, which is like non-clergy for people who are not familiar with the Catholic Church. So we have to empower community members to help each other. And President Kennedy's the thing I find whenever I've traveled is that people were so inspired by the very simple phrase, ask not what your country

Starting point is 00:22:41 could do for you, but what you could do for your country. People want to be of service to others. You go to a Special Olympics event. People are joyful, happy. Why? Because they're communion with others. They're celebrated for their humanity, their common sense of dignity, the dignity of every human being, and we're all children of God, and we're all helping each other. There's a feeling of fraternity. And the happiest I am, Tony, in any given week is when I get a phone call to ask someone who asks me to help a loved one who can get insurance, because I can get help with their insurance companies, since that's been my life's work. I know all those folks. That must give you just a great feeling to have the ability to help some of these people.

Starting point is 00:23:32 That's when I'm feeling the best about myself because I'm useful to someone else. And frankly, in recovery, that's the secret sauce to the psychic change that we have to have in order to have long-term sobriety. We have to have a conscious contact with a higher power, which means we cannot be feeling as if we're controlling everything. We have to be just servants to doing the next right thing and helping others who are need of struggling because that's how we get relief from the burden of our own self-centered selfish thinking, which creates torture internally in terms of our feeling of worrying about we're going to lose what we have or not get what we want. And I think we as a country need to really embrace that. And frankly, it's a very bipartisan. And as I said, spiritual things. So I'm

Starting point is 00:24:18 working with the Catholic Church to try to do some things. And we are now finding synagogues and mosques and other faith leaders who are interested in doing. Because frankly, these are ubiquitous. Every faith tradition is dealing with the challenges that families are facing because the church doesn't always know. They're not in the business of getting someone who's got schizophrenia or bipolar addiction to treatment. That's not their job. But they can be there for the families. of those folks. And as a person who grew up in a family that suffered from alcoholism,

Starting point is 00:24:55 there's very little in the way of Al-Anon, which is the group, 12-step group for people who have family members who are suffering from these illnesses. And I figure maybe churches and other places of worship can do more to help those families going through this, encouraging group conversations within the parish,

Starting point is 00:25:14 within others within the parish who are facing similar things. That's, I think, one of the ways we widen the aperture of getting support for these causes is we've got to appeal to the common humanity of every single person because everybody wants the current system to change. It's so vital for all of our self-interest. What about the economics and how it affects people? Economically, it's a powerhouse of an issue because if you can reduce the stress on caregivers, that helps employers who are seeing. people cycle in and out. And now in the new world that we're in, there's so much talent and creativity amongst these caregivers who can't contribute that economic value because they're so burned out. And they can't continue in their jobs because they have no support for their family members.

Starting point is 00:26:06 So the good news with the modern world is we can measure the seismic impact of our current failed approach to helping meet the needs of the whole family. And I think, think that will be what drives a lot of people to want to invest in this space because they'll see the economic returns. And then, of course, a lot of other people will see the personal and humanistic returns. Yeah, that's a great point. If we can just get that stigma away from it so people can embrace it and find ways to help, I was speaking with a guy, he says, if I tell people I'm autistic, they question him. Yet, if he was to tell them that he had cancer, they would say, oh, that's too bad, how can I help? So ultimately, we have to get that cohesiveness

Starting point is 00:26:54 so everyone can find it within themselves to reach out to people, whether it's autism, mental health, doesn't matter what it is. They have to find it within themselves to offer their hand and help. That's right. That's right. The beautiful thing is that for people with these diagnosis, that they can help each other. The relief comes from being in community, because isolation is what's really impacting the whole public health. People are being isolated for any number of reasons. I think if we make the focus isolation, people with disabilities are the most isolated of the group.

Starting point is 00:27:34 But there, but for the grace of God, we do not want to isolate people. It's our loved ones. It's us. It's the society that suffers if we do that. We've got a lot of work to do, but it's a time where people, again, we need some sophistication to plan a strategy around changing people's perceptions. That's what political campaigns at their best are about helping to educate

Starting point is 00:28:03 and build a coalition around kinds of ideas. That's what we need. Absolutely. What is it that you would like to tell the listeners that you feel, is very important for them to hear concerning all the work that you're trying to do to help those that need our help. In shameless self-promotions, profiles of mental health courage, I have in the back of the book, as I said, a QR code for our alignment for product. In order to make a difference, Tony, we need to align the various pieces of supports that we need.

Starting point is 00:28:40 Some of those pieces are supportive employment. Who, when they think about intellectual disabilities, addictions, thinking about employment? Employment is key to the self-esteem and sense of purpose for people who are struggling in recovery, trying to build stability in their lives. Housing. Who thinks that housing is what someone who has a medical need need? Housing's crucial. If you don't have a stable place, you can't get the most efficacious treatment. What about these other combinations? And the problem is the whole government is siloed by budget. So there's so much money for housing, so much for labor, so much for criminal justice, so much for human services, so forth. And what we failed to do is say, how much of this money

Starting point is 00:29:24 in housing is helping leverage the investments we're making in health care or in reducing the criminal justice spend because we unfortunately have no crisis response. By the way, for people with intellectual disabilities who too often get arrested because of the lack of literacy on the part of first responders about someone with intellectual disability, someone with mental illness. And so we need to have a multi-pronged systems-based approach. And so that's why I call this the alignment for progress. And I'm working with all the other advocacy groups because we have to align. We all have an interest in this, even though some of us have an interest in this piece of a continuum and others have an interest in this piece of continuum, nothing will work unless we're

Starting point is 00:30:17 all understood that this has got to be a continuum. And it requires all of our efforts, no matter where we are, to have a wider view of all the other aspects that need to go into helping people live their fullest lives. Yes, that's amazing that you brought up the part about work. I had Temple Grandin on the podcast. One of the most important things that she focused on was getting people back to work. She mentioned creating a pilot's checklist for them to follow, getting them to the workforce where it would create a win-win situation for all. Yeah, I just might make a shameless plug, too, for Best Buddies. So I've been on the board of Best Buddies, which was started by my cousin Anthony Shriver. And their really focuses employment. So they do work with companies that are willing to hire

Starting point is 00:31:08 folks. Those folks have to obviously be mentors, supported in employment. They also have, it's like big brothers, big sisters. So for Special Olympians who, when they're not out competing in Special Olympics, need to be supported in their community. Just a big shameless plug for best buddies. That's all right. It's about anything that can help. This has been a great conversation, great information. I really appreciate you coming on. Tony, congratulations in all your incredible work and success as a recording artist and producer. I love music. My mom was a concert pianist. Obviously, the big tribute to President Kennedy is the John F. Kennedy Center for Performing Arts, because that's where we get our spirit, our sense of identity, culture from the arts. And I have to think you feel so fulfilled,

Starting point is 00:31:55 having been able to be such a big part of contributing to our culture as a nation. Yeah, I really appreciate that. It's been a really great journey for me, working with as many people as I've worked with. Yeah, I'm very very, Very fortunate indeed. Yeah. It's great. It's great. Well, again, thanks for coming on.

Starting point is 00:32:13 It's been great. Thanks so much, Tony. It's been my pleasure. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymentor.com. contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not me the world,

Starting point is 00:32:55 the conversations we're having and the inspiration our guests give to everyone, everywhere, that you are not alone in this world.

Tony Mantor: Why Not Me ? - Patrick Kennedy on Autism,Mental Health, Addiction, and Political Change

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