Dr Tim Murphy: How A Psychologist In Congress Rewired Mental Health Policy

Summary

Podcast Summary: Tony Mantor: Why Not Me?

Episode: Dr. Tim Murphy – How A Psychologist In Congress Rewired Mental Health Policy

Date: May 8, 2026
Host: Tony Mantor
Guest: Dr. Tim Murphy (former U.S. Representative, psychologist, and mental health policy advocate)

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Episode Overview

This episode centers on Dr. Tim Murphy’s unique journey from psychologist to U.S. Congressman and his pivotal role in reshaping mental health policy—especially for individuals affected by severe mental illnesses like schizophrenia and those on the autism spectrum. Dr. Murphy discusses the complexities of creating legislative change in mental health, the impact of historical policy decisions, the ongoing battles surrounding treatment standards, and the crucial need for united advocacy.

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Key Discussion Points & Insights

1. Bridging Psychology and Legislation

• Legislative Complexity vs. Public Perception

  • [02:26] Many people believe passing a law is simple, but “it’s a lot more complex than that.” (Murphy)
  • The process is muddied by competing interests, entrenched bureaucracy, and the need for compromise or consensus, which are often different things.

• The ‘Old Man and the Sea’ Analogy

  • [04:41] “Sometimes that’s the way legislation starts, too. Good ideas are added on in the amendment process… By the time he got it to shore, all that was left was the head and a hook.” (Murphy)
  • Legislation is whittled away by compromises, often leaving only remnants of the original vision.

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2. The Making of the Helping Families in Mental Health Crisis Act

• Intent and Contentious Issues

  • [05:34] Dr. Murphy authored the ‘Helping Families in Mental Health Crisis Act,’ aimed at expanding access, improving care coordination, and encouraging evidence-based treatments.
  • A major flashpoint: “assisted outpatient treatment” (AOT), which allows a judge to require treatment without hospitalization.
    • Some advocacy groups opposed any coercive care, while Murphy emphasized its utility for those who are “gravely disabled” with conditions like schizophrenia.

• Challenges with Medicaid Rules

  • [07:23] Medicaid rules—originally intended to encourage community mental health care—ended up limiting psychiatric hospital beds and capping lengths of stay (two weeks at a time, max 120 days lifetime), a system Murphy calls “anti-science.”
    • “Can you imagine if we did those limits on such things as cancer?... You don’t do that.” (Murphy, 09:34)
    • Removing these restrictions proved nearly impossible due to budgetary scoring and the need to find “offsets” for any new spending.

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3. Systemic Failures and the Criminal Justice Pipeline

• Prison and Medicaid

  • [10:52] Medicaid won’t pay for psychiatric care in prison, so states avoid funding adequate treatment.
    • “About 80% of those with severe mental illness not only do not get psychiatric care, they are actually...abused and harmed in ways that we cannot imagine still occurs in the 21st century.” (Murphy, 10:59)
    • Solitary confinement is commonly used for the severely mentally ill, worsening their conditions.

• Family Burden and the Cycle of Crisis

  • [17:08-19:17] Families are left to navigate an opaque, overwhelming, and often hostile system.
    • “Once they’re in the legal system, they’ve lost control… the law stands in the way.” (Murphy, 20:30)
    • Families sometimes told to have their child commit a minor crime just to access care through the system—a “sick” reality.

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4. Marijuana Legalization and Its Mental Health Fallout

• Political & Economic Manipulation

  • [12:00] States promote tax revenue from legalized marijuana, but rarely address or fund the growing costs of psychosis linked to high-THC cannabis.
    • “This isn’t your papa’s Woodstock marijuana where it was like 4% THC. This is 70, 80, 90% potent.” (Murphy)
    • Evidence: In Canada, after legalization, ER visits and auto accidents linked to marijuana soared; the actual social and healthcare costs dwarf tax revenue.

• Policy Recommendation

  • “If you’re going to tax marijuana, use it to treat mental health. Because no state gives adequate funding to that. Nobody.” (Murphy, 14:32)

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5. Economic and Social Costs of Schizophrenia

• Scale of the Challenge
  • Schizophrenia costs (including direct care, comorbidities, justice system, homelessness, lost productivity): estimated $340–380 billion/year in the U.S. alone (14:32)
  • 40–50% of inmates and homeless populations have serious mental illness—a figure largely unaddressed by policy reforms.

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6. Justice, Privacy Laws, and Treatment Gaps

• Information Barriers

  • [20:30] Confidentiality laws (HIPAA) often lock families out of treatment decisions, keeping crucial information from care providers and further disempowering caregivers.
  • Example: FDA rules on clozapine (an effective medication for schizophrenia) are needlessly restrictive due to lack of practitioner experience and regulatory inertia.

• Organizational Diffusion and Focus

  • Large mental health organizations (e.g., NAMI, American Psychiatric Association) often become spread too thin, struggling to focus on high-impact, severe illness (Murphy, 21:45).
    • Quote: “As soon as you say mental illness, it expands widely...the American Psychiatric Association, when I went before them to say, will you endorse my legislation?...they said, we have so many divisions they can’t agree on what needs to be done.”

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7. Autism, Schizophrenia & The Spectrum

• Overlapping Risk and Stereotypes

  • Hollywood’s portrayal of autism (flat affect, savant skills) perpetuates stereotypes—real life often encompasses more severe challenges.
  • Up to half of those with autism may develop schizophrenia; similarly, half of those diagnosed with schizophrenia showed signs of autism earlier in life (22:49).

• Advocacy Message:

  • “If these two groups unite their efforts and say, let’s find our common ground and push together...When they do focus...we can get it done. But if you want us to be all things to all people, nothing gets done.” (Murphy, 23:45)

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8. Effective Advocacy & Legislative Engagement

• Actionable Steps for Listeners

  • Identify and unite on common ground (especially Medicaid reform).
  • Direct, persistent outreach: “You need to meet with [legislators] in their office, write them letters, send them emails...” (Murphy, 24:42)
  • Data shows voters will prioritize candidates with strong mental health reform platforms—especially families and suburban women (poll: “close to 95% among families who have someone with schizophrenia”).

• Be Vocal, Be United

  • Get involved with focused organizations (Murphy recommends Schizophrenia & Psychosis Action Alliance for severe illness).
  • [26:05] “Don’t be silent...It doesn’t take a long time just to tell a story, please do it...Say we need more hospital beds, we need more treatment, we need AOT, we need you to have treatment in jails, we need you to identify people early in life, when they’re in school...Eventually something will happen.” (Murphy)

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Notable Quotes & Memorable Moments

• “Nobody cares about crazy people.” (Murphy quoting Ron Powers, 21:16)
• “Legislation is often whittled away by compromises…sometimes what’s left is just the head and a hook.” (04:41)
• “Medicaid says: If a hospital has over 16 beds, we’re not paying for it…That was their way of forcing these hospitals to close and putting people in community mental health centers.” (07:23)
• “A giraffe is a bird designed by a committee.” – On the perils of unfocused advocacy. (23:45)
• “Once they’re in the legal system, they’ve lost control. Because…they want to get information. And with HIPAA laws and confidentiality laws, they talk to doctors…No, your son didn’t give us permission, so we can’t tell you anything.” (20:30)

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Important Timestamps

• 02:26 – The legislative process: reality vs. perception
• 04:41 – The ‘Old Man and the Sea’ legislative analogy
• 07:23 – Medicaid restrictions and the closing of psychiatric hospital beds
• 09:34 – The scientific absurdity of hospitalization time limits
• 10:52 – Mental health care in prisons
• 12:00 – Marijuana legalization and increased psychosis
• 14:32 – The true annual economic cost of schizophrenia in the U.S.
• 17:08-19:17 – The impact on and isolation of families
• 20:30 – Confidentiality barriers and medication access
• 22:49 – Autism spectrum, overlap with schizophrenia, and stereotypes
• 24:42 – Legislative engagement: what works
• 26:05 – Action steps for families and advocates

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Final Takeaways

• Systemic mental health reform is slow and deeply complex, often mired in bureaucracy, budget rules, and entrenched interests.
• Effective advocacy demands focus, persistence, and unity—especially around Medicaid reform and evidence-based care.
• The burden on families is enormous; laws and systems frequently isolate and disempower caregivers.
• Financial and social costs of ignoring severe mental illness are staggering, yet solutions remain hamstrung by policy inertia.
• Legislators and voters need education and consistent pressure to drive meaningful change.
• Grassroots involvement—writing, calling, uniting, and telling personal stories—can profoundly influence legislative action.

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This episode offers a raw and deeply informed dive into the realities of mental health policy, the lived experience of families and individuals, and the difficult but vital path toward a more compassionate, effective system for all.

Transcript

[A]

Welcome to why Not Me Embracing Autism and Mental Health Worldwide.

[B]

Hosted by Tony Mantour, broadcasting from the

[A]

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

[B]

understanding of autism and mental health.

[A]

Tune in, be inspired and join us in transforming the world one story at a time.

[B]

Hi, this is Tony Mantour. Welcome to why Not Me Embracing Autism and Mental Health Worldwide. This is our special event crafting Embracing Autism and Mental Health through Legislation. Joining us today is Tim Murphy, a former U.S. representative for Pennsylvania and a dedicated psychologist who leveraged his expertise to champion transformative mental health legislation during his 2003-2017 tenure. Fueled by a deep commitment to addressing the challenges faced by those with serious mental illness, he authored the Helping Families in Mental Health Crisis Act. This landmark legislation revolutionized America's mental health system by expanding access to critical care, improving coordination of federal resources, and prioritizing evidence based treatments for conditions like schizophrenia and bipolar disorder, offering hope and support to countless families. It's a pleasure to have him join us today. Thanks for coming on.

[C]

Oh, sure. No, this is great. This is something I work on nearly every day of my life working on these legislative issues.

[B]

So, yeah, I think that's awesome. If you would tell me a little bit about how being a doctor before you were elected to the House of Representatives, helped you in, in creating some legislation.

[C]

Each one influenced the other. I mean, yeah, being a psychologist, running for state senate, running for Congress, and then being back and then taking that knowledge in. Because I think when you're doing something like this and people want to know, a lot of people think, well, I saw that cartoon. If I'm just a bill on the Hill, can't you just pass something? It isn't that easy. And I thought as part of this, we might discuss how complex is it and why is it so complex?

[B]

Yes, I definitely want that to be part of our conversation. I think it's very important that, that people understand as a legislator, you have so many people that you represent. And of course they all want changes. Of course they all think that their changes are the most important. Then how you decide on which ones you can put together to create a bill that helps the masses. So let's expand on that a bit. Some people, or most people do not understand what you have to go through in order to get a bill past. What's the structure and what do you have to do in order to do this?

[C]

Well, many people have this idea that it starts sort of into Israel. Well, this is my good idea. I need you to create a law for my good idea. Can't you just do it? That sounds simple, and certainly that's the way we would explain it to people in grade school. Someone introduces it, it passes, it goes to the Senate, it passes, come back, president signs it. But it's a lot more complex than that. And when it comes to even dealing with such things in mental health, what one person sees as a solution, another person sees as the problem. And so as you submit a bill for something like involving what should be the rules with regarding inpatient care, or when the judge says you need to have inpatient care, what needs to be done? You have groups in favor and groups opposed. Oh, you have to be working with all these groups and try and find the compromise and consensus. Oftentimes it's two different things.

[B]

Can you expand upon the difference between the two?

[C]

You may not get consensus from all the parties because some will dig their feet in and say, I don't want to do this. But you have to get consensus among people in the House of Representatives and Senate on their state or federal level, and that's what it works at. So I know when I, a few years ago, worked on my mental health reform legislation, a bill that started off as a couple hundred pages long. You may recall an old story called the Old man in the Sea.

[B]

Yeah, sure do.

[C]

About a man who caught a fish. Right. He'd been trying to get this big fish all his life. He finally catches a big fish, and he's exhausted from fighting this fish and he's rowing it to shore. But in the meantime, a lot of other fish saw his big fish in the line because it was too big to haul in. By the time he got it to shore, all that was left was the head and a hook. Sometimes that's the way legislation starts, too. Good ideas are added on in the amendment process. Some great ideas are taken off, and sometimes some not such good things are added on. Taken off. But that's in order to get consensus. It can be a long process. And when one does that over multiple years, one may find that actually a decade or two later look back and say, you know, what we did or what someone did actually caused more harm in the system. And that's actually what happened in the mental health reform movement that began in the 1960s started off as a good idea, and since then we've been dealing with a lot of the harm and fallout of that legislation.

[B]

Now, was it the Mental Health Crisis act that you passed?

[C]

It was the Helping Families and Mental Health Crisis act, yes.

[B]

What were some of the challenges that you faced in getting that passed?

[C]

From the very first time I showed that bill to my chairman, he said, you know, you're going to have to compromise. And I. Well, of course I understand that process, but I've been working this long time, have talked to all the interested parties, and I was really surprised by his statement. Now, I wish he would have said, you got some great stuff in here. Let's see what we can do to get this done. So the challenges were on some of the content. For example, I wanted to change the law with regard to something called assisted outpatient treatment. This is where a judge can say, you need to get into treatment and stay in a treatment. It's an alternative to being hospitalized. And I thought, this is good because research has shown in multiple states how it has actually improved the lives of people with severe mental illness. Here I'm talking about people with schizophrenia, severe psychosis, people who aren't really sure who they are or where they are. That condition of anosognosia moving forward in this, some people said, well, you should never have coercive care. You should never force someone to care. And I said, I get it, but sometimes a person cannot control themselves, cannot help themselves, what we call gravely disabled. When they're gravely disabled, then they can't make decisions for themselves. And in some cases, they may think about harming themselves or harming someone else. And those are the two standards that have been around for a number of decades. But as soon as the person said, you know, I'm not going to hurt myself anymore, I'm not going to harm anybody anymore, then people can't get them into care. And such persons may also then start with some medication and then say, I don't like it anymore, or, I'm healthy, I don't need it anymore, and relapse right back into a psychiatric crisis. So that was one of the battles we had of some people saying, you shouldn't do that at all.

[B]

That's a real tough situation because most people with lived experience understands that that is a very valuable tool that can help a lot of people. Were there any other obstacles you faced on this bill?

[C]

We had another battle with regard to fighting Medicaid. Medicaid has a number of rules they put in place back when John F. Kennedy Was President United States. The very last bill he signed before his assassination was to create the community mental health care system in the United States. The idea being we could move from the inpatient hospital model, putting people in there to having community mental health centers makes a lot of sense for many. Mental health or mental illness issues, anxiety, depression, other crises where people don't need to be in hospital. What happened from that is Medicaid made a number of changes then in the next administration and did the following. They said, if a hospital has more than 16 beds, we're not paying for it, Medicaid won't pay for it. And the idea with that is at that time we had, we had about half a million psychiatric hospital beds in this country for a population of 120 million. Medicaid says we're not paying for it. And that was their way of forcing these hospitals to close and putting people in community mental health centers. So that occurred. And what happened was not only did those hospitals close these big psychiatric hospitals, which were designed to actually as an alternative to prisons and homeless and the abuse people got back in the 1800s, but what happened is those hospitals closed, but the community mental health system couldn't take care of the severely mentally ill. So we ended up with more homeless, more people where families had to take care of them, a lot of severe problems, more crime, more in jail. That was one problem we tried to tackle, and I'm going to add it to these ones too. But that would also require some changes in Medicaid. Medicaid is a very bizarre rule that says for a psychiatric hospitalization, we're not paying for any more than two weeks in the hospital. And they have another rule that says lifetime, we're not paying for more than 120 days in the hospital. No. I look at those as a psychologist myself and say that's just bizarre. There's no scientific merit to it. In fact, it's anti science because many times to get a person off of one medication and get them stabilized on another getting off, you need a couple of weeks, stabilizing another, maybe a couple of weeks. In some cases, you may see results in a few days. A two week limit means someone may have to be discharged from hospital and then you lose them, or maybe they'll go to a different hospital and they do this hospital hopping game.

[B]

Not only is that tough for the hospital to keep up with it, the doctors to keep up with it, but that makes it really difficult for the family to navigate and get what their loved one needs for help.

[C]

That third thing 120 day limit. Can you imagine if we did those limits on such things as cancer? On anything. You don't do that. I'm sorry, you have a terrible heart problem. Well, we can only keep you for two weeks even though you have a heart transplant and it's failing. But psychiatry, psychiatric hospitalizations have this tremendous or anti science approach towards them. So here's what happened when we said, let's change those three things. The number of beds, overall hospital stay two weeks at a time and lifetime. The Congressional Budget Office scores bills that scores the cost of them. And they said, well, what'll happen if we lift those limits? Every state will put everybody in a hospital and that's what they'll do. And we think it's going to cost $60 billion over 10 years. I said, where did you get the number from? Well, we just assumed everybody would be in a hospital. Well, that's. You just made that number up. That's not going to happen. So they came back and revised it and said, well, we think it's going to be 12 billion over 10 years. So do the math. You know, one point some billion per year. We said okay. But the rule was in Congress you could not pass a bill that would have a cost unless you had an offset and the offset had to be in the same field. So I had to come up with something else in the realm of Medicaid to pay for this. But do we stop paying for something else? So because the Congressional Budget Office controls that, we couldn't pass that. So that part got peeled off as well. That continues to be a huge problem for many families.

[B]

It seems like I heard about something concerning Medicaid and the prison system. Did that come up at all?

[C]

Medicaid also says we're not paying if someone is in prison. So states have to pick up the tab on that. And quite frankly, states do not. States do not pay for psychiatric care. About 80% of those with severe mental illness not only do not get psychiatric care, they are actually, I don't use these words lightly. They are abused and harmed in ways that we cannot imagine still occurs in the 21st century. They're put in solitary confinement for 20 some days. You know, we use that punishment for the worst of the worst, serial killers, murderers and drug dealers. Someone, schizophrenia, who has run in with a guard, gets in a fight with some prisoners and as punishment they'll put them in solitary confinement where they're in a small room 23 hours a day and that's it. That causes much worsening, is an awful condition for them. And I wish we could stop that. But no one's forcing states to treat these people. And so the harm increases.

[B]

I think either you mentioned it or I heard it, that there's an issue now with marijuana and the states, because they believe that it creates more psychosis.

[C]

Yes. So states are saying, you know, if we legalize marijuana, not just medical marijuana, but legalize recreational marijuana, won't this be wonderful? We'll have all kinds of tax revenue and this will be great and we can do all kinds of things. Now I'm a state legislator. I know how this works. They say, oh, we have all this money now. How would you like something for your district? Oh, gee, I'd love it. What do you mean? Well, maybe you need some new playgrounds, maybe you need a street pave, maybe you need some water lines going into a rural area. How would you like cable, any of those things? Say, gee, what do I have to do to get that vote for this bill? So it's used as money for political leverage. It's used as money to help get votes. It is used as money for things that are useful too. But my point is that's got nothing to do with marijuana. And here's the thing. So states may say, look, we may make 50 or 100 million dollars a year on this, but let's look at the cost of marijuana. As we like to say, this ain't your, your papa's Woodstock marijuana where it was like 4% THC. This is 70, 80, 90% potent. So when states legalize this, what happens is we know that adolescents and young adults who use marijuana on a regular basis increase their chances of psychosis and a psychotic crisis breakdown. They increase it by several percent each year. It compounds over time. Well, now we have new research says not only that, because that the brain is still developing up to age 25. So not only that group, but we recognize now people over 60 also have this problem because perhaps they're using marijuana more and more for a number of reasons that they think it's legalized. And you have people saying, well, it's a natural substance, must be okay, well, so is cyanide. What happens is we have these cases of legalizing marijuana, but here's what it does. A study done in Canada, after they legalize it, they found that the number of auto accidents related to marijuana use increased by a few hundred percent. Alcohol remained the same, but drug from marijuana increased. So it wasn't only auto accidents. And the police have to respond to those. Paramedics respond to those but emergency room stays increased by a massive amount, I think by a couple hundred percent. You had stays, intensive care units, hospital stays were longer. Well, who pays for that? Well, we all paid for it through our insurance. There is the bills that come from communities for police and firemen and paramedics doing those things too. And the cost of families lost income because someone was injured or whatever else. Now I raise this question, well, if we're doing all these things, who's paying for it? And the answer is, nobody. Well, except it goes back to the taxpayer. So on the one hand they say, look at all this tax revenue and we can use it to have all these projects. It's nothing compared to the cost of schizophrenia.

[B]

Schizophrenia, wow, that's very interesting. A lot of great information there. Did you have a study done or do you know more about the cost of all this and how it affects everyone?

[C]

An organization which I'm a board member for, called Schizophrenia and Psychosis Action Alliance. We did a study a couple years ago and we're repeating it now. Here is what we believe. The cost of schizophrenia, that's 1% of the population, that this is the cost. If you take direct medical care, psychiatric care for the disease itself. Schizophrenia, if you take the fact that 75% of people with schizophrenia have at least one chronic illness, 50% have at least two, and 30% have at least three. This is everything from cancer, bone disease, gum disease, skin diseases, whatever else it is, all those cost money. You look at lost revenue because they're not working. You look at families have to pick up the cost of this because there's other medical bills that Medicaid or insurance may not pay for. You have the whole justice system where about 40% or 50% of people in jail have a mental illness by 20 or 30% have a severe mental illness. Of the homeless population, about 40% of those have severe mental illness. And every time states say, oh, we're going to reduce the homeless population, we'll give them shelter, we'll give them food cards and things like that, they're always peeling off the low hanging fruit. People just need little intervention, get better. But states say, oh look, we have these programs, we dropped homelessness by 30 or 40%. Yeah, but you didn't get to the problem. So homelessness cost money and it's not addressed. You add these things together and the cost per year, we estimate the cost last year in the United States for schizophrenia alone was between 340 and 380 billion dollars. Now you take all the revenue from all the states from marijuana, and it's not even a fraction of that. So what happens is you're increasing the use of marijuana, increasing the incidence of psychosis, and by the way, it also increases incidence of problems in their children, too. So you have generation coming up. It's, look, if you're going to legalize it, and some 38 or 40 states have already done that, dedicate the revenue to treat the problem you're causing. You have a tax on cars and your license that goes to pay for highways. If you're going to tax marijuana, use it to treat mental health. Because no state gives adequate funding to that. Nobody. There's some that spend a lot of money, but it's wasted. And so this is a way of doing that. Create the problems, pay for the problems. We recognize it is a problem. Including public health campaigns. I don't see any commercials on television. I don't see any billboards, I don't see any things on subways or buses saying, if you smoke marijuana, your children will have problems like low birth weight, like fetal alcohol syndrome, increased risk for psychiatric problems, attention disorder, psychosis, etc. You're going to have problems. Stay away from this stuff. Instead, you have a massive amount of money spent by lobbyists saying, oh, vote for this. We'll give you campaign donations. I know this is true because I've been to some campaign fundraisers for members. A huge number of people in the room are lobbyists for legalizing marijuana. And even some of them say, yeah, I know, I don't like it, it's not a good idea, but they pay well. It's treacherous ground. While walking out with that, one of

[B]

the more important things that you just brought up is how it affects the families. They see a person having an issue, first thing they think about is the treatment at the hospital. But I don't believe they really think of how it affects the family. I think the legislation you were speaking about, with more beds and more abilities to help those will actually not only help the people that need it, but it will also help the families deal with it as well.

[C]

It'll definitely help the family unit because families are left to do this on their own. They fight to get their child care. There's oftentimes adolescents, young adults, they fight to get them the right medication. And then if there's any kind of crime committed, many times it's a small crime. And what other people may have a prison sentence of maybe a week or two because they have other problems, they end up with longer prison stays. And so the families have all this criminal justice expense too. And what they're also finding is as they're in prison and they're in solitary confinement and they're abused and they become more suicidal. These are birds the family is trying to deal with. Can you imagine if I don't know, an 18, 19 year old in the throes of his hallucinations and delusions, went into a local store, stole something, find himself in jail and next thing you know they're in fights with gang members. And so for their protection they put in solitary confinement. This destroys the hearts of many families and they spend their life savings taking care of this and they still can't get through. They are the most frustrated in terms of how they handle this and the burden it places on them. No wonder so many families just keep turning towards. They just don't know what else to do. It's awful.

[B]

Yeah, that's seems to be one of the most common things that I hear in talking with people that come onto my podcast. It's the big unknown. They just don't know how to handle it. When it first happens, they're overwhelmed and they just don't know what to do. Then because of the different laws aot etc, they don't have the money, the institutions don't get paid so they actually throw them back out on the street. It's a big cycle of the unknown and it keeps circling around and seems like they just don't know how to help these people. And then the cycle just continues.

[C]

That's right. And families don't have help, so families are on their own to try and stop that cycle. I consistently find families who ask when you first learn the diagnosis, who was there to explain what was going to happen to you? And they generally say nobody. In the field of psychiatry and psychology, a very small percent of us are trained and regularly treat these insidious diseases. Even among children. We have a higher incidence of children diagnosed with autism. A lot of people don't really know how to diagnose it and how to recommend properly for that schizophrenia. Many times people say this is too much of a problem. I'm going to find myself testifying in court. I don't want to deal with these folks. And Medicaid pays so little anyway. So all across society people have pushed away and pushes back on family and it's a heartbreaker for families. I have known many a family who has actually been told, if you want your child to get care, have them commit a small crime. So we'll put them in jail and make sure they get care, and then they say, wait, commit a crime and then in jail, and who knows what happens then. Well, at least we can force them to take medication. That's how sick our system is right now.

[B]

Yes, I've heard that many times. And what most people don't realize is that once their child is put into the system, it doesn't necessarily mean it's going to turn out the way they thought it would.

[C]

Exactly. A family's fine. Once they're in the legal system, they've lost control. Because what also happens is they want to get information. And with HIPAA laws and confidentiality laws, they talk to doctors. They try and talk to parole officers. No, your son didn't give us permission, so we can't tell you anything. And families say, well, let me tell what medications are on. Nope, we can't talk. Let me give you his history and background. So you know, no, we're not talking to you. Which is tragic because someone, for example, a newer drug being used more with schizophrenia is clozapine. The doctors don't know about clozapine. We're working hard to get the FDA to change some rules on that to make it more accessible. People will use older antipsychotic drugs which don't work very well. And just getting information is a problem. So again, it lands on the parents who know all these things. Hearts are breaking where they're trying to make things happen. And it's the law that stands in the way. Legislators do not understand. Talk about wanting to have them walk a mile in their shoes, spend an hour in their shoes, and understand all these aspects. Instead, they push it aside because as the words from a book by Ron Powers, the title of the book is Nobody Cares about Crazy People. It's actually a quote from someone who is campaigning for a county office, said, nobody cares about crazy people. We don't pay attention.

[B]

What's your opinion on how we get these organizations to step up? The more people I speak with, it seems like the bigger the organization, the less help that they get from them.

[C]

Well, I think some organizations are so big, they become very diffuse and are no longer focused. National alliance for Mental Illness, great concept, great idea. But as soon as you say mental illness, it expands widely. And then you have all sorts of groups that want their piece of the pie. It no longer is effective. The American Psychiatric association, when I went before them to say, will you endorse my legislation? They couldn't get themselves to do it until the very end, the last couple weeks, because they said, we have so many divisions they can't agree on what needs to be done. And I said, how about only have the divisions vote who actually treat psychosis? American Psychological Association. I stood before an audience and said, how many of you are in favor of this bill? Or how many of you against this bill? A bunch of hands went up and asked, how many of you read the bill? No hands. How many of you have actually focused on dealing with schizophrenia? Almost no hands went. And I said, well, if you deal with schizophrenia and you've read the bill, you'll be for the bill. But what we do is we. We have these judgments on ignorance. Now when it comes to autism and schizophrenia, for example, autism and spectrum has become very wide the spectrum. There's even TV shows will have someone in a star character role where they want them to look like they're in the spectrum.

[B]

They.

[C]

They're flat emotions. They don't interact well socially, but they can be very bright. That's a stereotype of autism because it's entertaining, right? Want it all to be like Rain man, as Dustin Hoffman was in that movie. And it's not that way. Many people with autism, which are severely, severely disabled, can't communicate, maybe harm themselves a lot. There's also some people there who. We know that about 30 to 50% of those with autism will later on have a diagnosis of schizophrenia. I think they're about three to six times higher risk for schizophrenia. Now, those with schizophrenia, about 30 to 50% had a history of autism. Now, what does that mean? Does that mean, was it really autism? Was it early signs of schizophrenia and misdiagnosed is. There are genetic factors, clear genetic links on a similar path for many people with autism and many people with schizophrenia. And I believe a lot can be done if these two groups unite their efforts and say, let's find our common ground and push together. But as soon as a group says, yeah, but what about me and what about me and what about me? It says, we're not talking about that now. And unless people focus, you can't get things done. When they do focus, and this is important, you have to understand, we may not be able to take care of everything right now, but we do focus. We can get it done. But if you want us to be all things to all people, nothing gets done. They say a giraffe is a bird designed by a committee, and that's what it comes down to. Everybody wants their different thing in there, and it doesn't end up what you wanted in the first place.

[B]

Yeah, we have to do baby steps, help the first person, then help the next one. By the time we get to the last one, we've helped them all.

[C]

Yes,

[B]

I've talked with so many people that have tried to do so many different things. They've talked with their organizations and they're quite frankly frustrated because nothing's getting done. So what's your opinion, legislative wise, that we can take and do something to get all these people together and ultimately the people that need the help actually get it?

[C]

Well, one is find and list the common ground issues on the federal level that need to be done. I believe they always have to do with the Medicaid payment system. You have to educate every senator and every member of Congress. You need to meet with them in their office, write them letters, send them emails. And the reason I say that is they never read the letter. You don't fight. People say, well, they should just do it. No, they don't understand. And I tell folks, you know, you're getting through to your congressman when he's walking down the street in a parade, he says, tony, how you doing? I remember we talked. That's what you want. We did some polling on this and found among a couple groups, suburban women and families who have someone with mental illness. We found when you ask the question of such how important it is to have more hospital beds or more funding, et cetera, huge numbers. But when we asked a question and say if you knew a candidate, place reform of mental health high in their platform, what does that do to increase your likelihood of voting for them? It was 88 to 90% among suburban women and close to 95% among families who have some with schizophrenia in the family.

[B]

Yeah, this has all been just tremendous information. So in closing, what would you like to tell the listeners that you think is just so important that they need to hear to better understand what the legislators are trying to do and to better understand in what they need to do to work with these people that can help them?

[C]

Well, one is look at some organizations I think can be helpful for you with somewhat severe mental illness. I mentioned NAMI before. Great organization, but it's become so wide and God bless them, they're great, but sometimes they're so big they can't be effective with focusing on that. So look at some other organizations that can be effective. I'm a member of Schizophrenia and Psychosis Action Alliance. We work on schizophrenia and psychosis. That's we focus on. And a lot of families are being part of that now too, as we do that. So look at some of this laser focus on your issues. Because let's face it, as you mentioned before, families are struggling. They don't have time to do all this. But their united voice means everybody does a little bit. And it helps immensely if an organization says, we have these multi thousand letters from people who signed a petition. So be part of an organization that's like that. Number two, don't be silent. It doesn't take a long time to write an email to your state and federal legislators and county or parish legislators. It doesn't take a long time just to tell a story, please do it. But then they're going to say, what do you want me to do? Say we need more hospital beds, we need more treatment, we need aot, we need you to have treatment in jails, we need you to identify people early in life, when they're in school, we need you to follow up and we need you to hold people accountable for this. All of those things are important and hit those points over and over again. Eventually something will happen and I don't want to see this too. A lot of this happened in the 1960s. There was something in California called the Letterman Peak Tort Act, LPS Act. And that was an act that says, let's start closing our psychiatric hospitals and do community based care. A lot of people say, well, that's what's caused the problem. And as a President Reagan, excuse me, as Governor Reagan's fault, but actually the disability rights community said we shouldn't put them in these institutions. The ACLU said we shouldn't put people in institutions without really grounds. And so they came with this idea that says, well, let's give someone 72 hours where they have to be evaluated or released. Well, not a lot of research went into that. And quite frankly that's a ridiculous thing because if you use the standard of the person that has to threaten someone, that's not a good scientific standard, not a good medical standard. Well, the way this bill passed it wasn't that the House, the Assembly and the Senate in California said that's a great idea, let's pass this and have the governor sign it in the final hours of the session year. Something called sign to die, which means any bills that don't pass die, they couldn't get it done. But the speaker of the House talked with some members of the Senate, said, can you find some way of getting this bill done? Because want to get it done. There was a staffer and he admits this. The staffer said that bills in order to get voted on, they have a green sheet on top of them and It's a legislative analysis, says this bill is going to cost this much or not much. It's greenlight, it's ready to go. This bill did not have that green sheet. So he turned to another staff member, says does anybody have some green paper? And he typed on there a facsimile that looked like this. He called a bill analysis and said, this bill won't cost anything, we'll save money, let's pass it. Stuck it on all the legislative packages for the members and they voted on it without reading it because they were lied to. And he admit probably illegal, but it passed. That's how that was done. And we've been living with that terribly anti scientific approach, anti medical care approach, anti psychiatric approach since then. Still staying with a 72 hour hold or other things like that. When people hear that, they say, I can't believe it. Yeah, it was all shenanigans and illegal action that took place that put us in this place. And now what, 60, 70 years later, we're still suffering from it. So be united, be vocal, be involved and don't give up.

[B]

Great advice. Well, this has been great conversation, tremendous information. I really appreciate you taking the time to join us today.

[C]

You bet, Tony, thank you for being a strong way of a catalyst for all these voices for mental illness.

[B]

Oh, it's my pleasure. Thanks again.

[A]

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 WhyNotMe World. One last thing, spread the word about why not me. Our conversations are inspiring guests that show you are not alone in this world.