Welcome to Why Not Me, embracing autism and mental health worldwide. Hosted by Tony Mientor. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guest share their raw, howlful stories. Our song was far 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 Mientor. Welcome to Why Not Me, embracing autism and mental health worldwide. Joining us today is Rachel Strife. She is the co-founder of Arizona Mad Moms, a fierce advocate for transforming mental health care for those with serious mental illness. With her background as a chemical engineer, she brings a unique data-driven perspective to her mission, fueled by personal passion and a relentless drive for systemic change. Her work has rallied countless families, influenced legislation, and sparked hope for better mental health support in Arizona and beyond. Today, we'll dive into her inspiring journey and her advocacy. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors. Thanks for joining us today. Thank you. Yeah, thanks for having me. Oh, it's my pleasure. If you would, give us a little background on how you got involved in what you're doing. So initially, I had a family member that developed serious mental illness and made a very good recovery. And the medication that took years to access was called clasapine. And it's a really important anti-psychotic medication that family members doing great, that was many years ago. At the time when all of that situation happened, I had really no idea about serious mental illness. I didn't know much about those disorders. I had taken maybe a psychology class in college that talked about schizophrenia and bipolar disorder, but I had never really known anyone. And I just didn't have any experience with anything like that. And if serious mental illness is not on your radar, you really have no idea. Like I really didn't know what a psychiatrist even did. And I had never even visited one with all this happening. What changed since that time? I had the opportunity to meet people once something like that happens to a family member. You see individuals on the news and on the side of the street. Your perspective is a lot different. I met an amputee that was living on some cushions behind a building. I was able to recognize a serious mental illness and I was able to get him some help and become his advocate. And then I eventually became just through meeting friends, a legal guardian of a woman who suffers from schizophrenia. And is a very complex case. And so I help advocate for her and I help her family make sure that they are providing for her care. I just started seeing a world that I had no idea existed. It's really a genocide happening right now. People are dying behind bars, dying in the streets. People are dying prematurely from untreated illness and from comorbidities from the lifestyles that happen. Substance use disorder that can sometimes co-occur. The side effects of very strong medications that they need to take. It's a very difficult world that has been long forgotten. Right now families and mothers and jails are the new asylums. We closed the hospitals, most of them, and we didn't fortify community services. And there's many elements of the IMD exclusion that is preventing specifically serious mental illnesses from getting the treatment they need. Unlike other types of disabilities, our kids, our family members with SMI are neglected and forgotten. And mothers are going to change this. You've gone all through this. You've seen everything that you've seen. I know you work with legislators and senators. I'm curious, what do you see as the big challenge? You just brought up that a lot of the hospitals have been closed over the last few decades, and the prisons have become the de facto hospitals. How do we get around that so this can stop so that these people can get treated with a little more respect? Because as you said, if a person doesn't have any lived experience on this, they don't know what the heck is happening. They do not understand this. We have to somehow get it across to them because actually I was one of those people. I didn't get it. It wasn't until I started interviewing people on my podcast early this year that I started to get an idea of what was happening. And I still don't know what's going on. No one ever does unless they're living it. If I heard of some bad thing that happened, I used to think, oh, it's a bad person. Put them in jail. Now, I want to know more to see if it's just a person that the system failed. So how do we get out of this situation where the system just keeps failing these people? Probably the most foundational piece of this is education. There has been a movement to really flatten what we consider a mental illness. Somehow that term has gotten expanded to every type of depression or anxiety or worried mental health condition that exists. That has significantly confused public perception that has detracted and funneled funding away from true mental illnesses, true serious mental illnesses. Everyone is confused. When I was 14 years old, my grandfather was a criminal defense attorney. And I know now this was the beginning of my training as an SMI advocate. He sat me down at the age of 14 and said, you need to watch the most important movie ever made. Most would think, oh, he made me watch to kill a mockingbird or something like that. But instead, my grandfather made me watch the movie Psycho, which I don't think I slept for years after that. I don't know why. I know now why he told me to watch it. But that movie was about a man who ended up developing some sort of dissociative identity disorder and it was a horror film where he killed people in the infamous shower scene. But most people don't realize that at the end of that movie, and this was the point my grandfather wanted me to get, the end of that movie plot, he is sent to a mental hospital for the rest of his life because he was found not guilty by reason of insanity. Well, I've seen that movie. I never remembered that part of it, but I guess I'll look at it completely different from now on. There was a time when we understood this as a society that mentally ill people are very sick that their illnesses and the symptoms of untreated illness can cause them to do strange and dangerous things and even commit horrible violent crimes because of the symptoms of their untreated illness. We have forgotten that as a society. And there's a lot of reasons for that. We've also somehow lumped these serious brain and thought disorders that are actually organic brain diseases, probably even neurological illnesses. These seem to have gotten lumped with general mental health and we are confused and we put them under the umbrella of behavioral health programs and these sort of, you know, voluntary health and wellness treatment programs. These are serious serious illnesses and when we shut down all the hospital beds, now mothers and jails are taking care of these individuals from a physically responsible perspective, we pay for this either way, whether we are putting these disabled individuals in a jail or a hospital, we're still paying for it. And it's the public safety concern. So simply letting everybody run in the streets without treatment and untreated, it's a major public safety issue. I have mothers right now in our groups that are in harm's way. I just talked to one five minutes before this call. Care givers are often threatened and assaulted. It's much worse if maybe they are undocumented family because they're then afraid to call and ask for help. So it's really a public safety crisis more than anything else right now. This led you to be a founder or a co-founder. Co-founder. Yes. Arizona mad moms correct. Arizona mad moms. I was also the co-founder of another group called the angry moms. That effort has to do with access to a really important medication called clasope. The other thing that we seem to have lost track of is that these acute brain conditions are treatable with medication. How do you treat a psychosis disorder? You do that with an anti-psychotic with medication. There's been a big movement kind of away from psychiatry or perhaps even I would say disrespectful to psychiatry. It's true. There's a lot of private practice psychiatrists that don't treat serious mental illnesses. And it's a bit tragic. All the resources, again, go to these mild general mental health conditions and where we need psychiatry, where our lives depend on this is with the serious psychiatric disorders. Okay. So which one was first? Mad moms or angry moms? Well, the angry moms actually came first. So we didn't pick any of these names. The Arizona mad moms was, I think, the most recent and there's mad moms chapters in other states. But the angry moms started, I want to say, 2019, 2020, a little frustrated caregiver in Michigan couldn't get clasopean, a critical medication for her loved one. She got upset. They called her angry. But she and a lot of mothers that joined us succeeded in getting FDA regulations removed surrounding access to that very important anti-psychotic. How was the start? So then when other groups started forming to address other issues outside of clasopean and issues with policy and laws, with treatment and access to care, they said, well, you're not the angry moms. I guess we'll call you the mad moms. That's the term that has really stuck. So we're the mad moms. And maybe there's a double entendre there. I don't know because it's hard to live. It's hard to live that life. So with those two organizations, you are actually working with people that have to live with this on every single day. Yes. And I think you also work with senators and legislators to work on bills to actually make some change. Yeah. So once our group solidified, this was at the end of 2023 and Crystal Fox, who you interviewed. Our son passed away after he hung himself on December 23rd, 2023. That generated outrage in our community who had been fighting for Joshua to have access to care. So we started the Arizona mad moms and we got some attention from lawmakers in our state on both sides of the aisle, Republicans and Democrats through our efforts at our state capital by showing up by our testimony. We succeeded in passing several laws among them was John's law named after Joshua's dad, John Fox, who I knew from a parent support group that I was in. Yeah, that's just so tough, but it was really impressive that you got it done. That really just exploded our movement. You know, there was news coverage over those laws being passed. There was news coverage highlighting some of the tragic stories. We had stories read by a state senator on the Senate floor. We just started sharing the truth about serious mental illness and not sugar coating it. And our movement in Arizona that started out with about a dozen moms at that point in two years time. We're now about 550 families and that's not a success statement. That's a tragedy because what we are finding is families and these very sick individuals are being failed by the system. Yeah, that is just so sad. I'm also learning that while there's a lot of similar problems in every state, there's a lot of differences from state to state in what the problems are. For example, California has money. Their programs are funded, but they don't have great laws and they don't have great policies. Arizona, we have reasonable laws. We have reasonable policies. We have good relationships with our Medicaid office, for example, and the local clinics, our programs are woefully underfunded and there is a major, major failure on the part of our state to fund essentially supported housing and appropriate facilities for individuals. So we've got a big financial problem that's led to a public safety crisis in our state. Do you have an AOT law? And if you do, how does it compare to those in other states? We actually have a very good, well-established AOT program. In Arizona, we call it court-ordered treatment or COT. You'll find that different states might have other names for it. So we have COT program in Arizona, both inpatient and outpatient. At least the criteria is reasonable. We have solid due process. There's a couple gaps with it, but overall, it's set up to be reasonable and effective and also respect the patients and their families. The problem is that it's poorly funded and there's gaps. I mean, there's pockets of good providers within our COT system, but there are some real challenges in delivering the necessary care and the level of care that's needed to treat those folks. One of the biggest things I hear from various people from different states is just like you said, they can get the laws passed. One is getting the funding to support them. You can have laws, but if they're not being implemented because they're not being funded, then it's really not helping anyone. So what's the next step in order to get these laws out there working because the money's behind them pushing them? What's interesting is the money is there, but it needs to be redistributed. I'll give you an example. Because of the IMD exclusion, our hospital system is set up to deliver care in only a two-week increment, and that's most states. So individuals can be hospitalized longer than two weeks, but the states then have to pick up the tab. And so the way Arizona is designed is we have plenty of beds, plenty of hospital beds, plenty of Medicaid dollars being funneled into our state. It's just happening in two-week increments in the most expensive way possible. So there is a revolving door of individuals that are discharging from one facility after two weeks and going right into another within a matter of days. Like programs that offer long-term care, for example, for developmental or intellectual disabilities, physical disabilities, or age-related disabilities in our long-term care programs, those conditions have opportunities for assisted living programs and long-term care because they are not part of this IMD exclusion. And so we can have individuals living in assisted living facilities and programs that are supervised and provide around the clock care. But we've excluded the SMI population from that. So instead, we're doing it very expensively in two-week stays. So a variety of private hospitals ask anyone who works in these private psychiatric facilities at any point in time, a third to one-half of the patients in those facilities are friendly faces, revolving door individuals that we are essentially housing in hospitals. This looks the other way because Medicaid dollars are funding this. And the housing cost, the assisted living cost, that the states have to pay because of the IMD exclusion, they're avoiding investing in that because we can just keep people on these two-week funneling of cash into our state. So what's your answer or what is your solution to this issue? So if we took that money and we applied it to supervised housing and long-term care and assisted living, you would get so much more for your money. So this is not a lack of available funds, it's style of. I mean, if we turned our jails into good treatment facilities, if we created secure residential programs like we do have for Alzheimer's. If we invested in some decent real estate and workforce development, we could get early intervention, we could prevent comorbidities, we could prevent deterioration, and we could stop these individuals from not just deteriorating and becoming increasing burden on the system. But I've seen recovery to where individuals are no longer disabled and are even productive tax paying individuals. So there's ways to do this. We're just not doing it. I was an engineer for 27 years. I worked as an industrial, chemical, and biomedical engineer. That's what I did for a long time. And it pains me to see the inefficiency in the system. And that's probably why I'm so driven to fix this thing. We're not looking at the right outcomes. We are spending money on the wrong thing and it's wasteful. It's not just wasteful with our finances and our tax dollars. It's wasteful neglect and inhumanity. Okay. We've covered a lot of bases here. Who's the problem? Who do we point the finger at? Who's number one on the list say you need to do something and then number two, you need to do something. How do we figure out the ones we need to look at and have them change their thinking so we can change the system so it ultimately gets better to help those that really need the help. Ultimately, it's going to be lawmakers and it's also going to be medical schools and the field of psychiatry. And I hate labeling government or a medical field as an enemy because we need them. Our lives depend on this. Our loved ones lives depend on this. We absolutely need good skilled psychiatrists and we need lawmakers to understand serious mental illness. Both the criminal justice implications and the access to care that is needed and to realize that we are going to pay for it either way. And we need to stop lying about what's happening. This sugar coating that mentally ill people aren't dangerous. Everybody can recover. It's just a matter of, you know, will or talking it out. These are serious medical conditions that require treatment, that require good doctors, that require good lawyers, that require a solid system of care. And these are truly disabling, devastating and dangerous sometimes. Yeah. So how do we get to the point where people can understand? Because a lot of people like to use that word stigma, I don't use that anymore. I try and use the word perception because everyone has their perception of what they think it is. It can be autism. It can be bipolar. It can be schizophrenia. It can be anxiety. It can be anything. They have their perception. And that perception is only what they think it is. Right. Even if they look at it in reality, that's what it really is. How do we go about getting that perception changed to everyone? I think that's a huge barrier to get past because people aren't living with it and they only think they know what it is, but in reality, they really don't. Yeah. So the first thing I want to address, the S word stigma, I don't allow that word in Arizona mad mom circles. It has been a giant red hearing that is not the problem. Our kids cannot get treatment. Our kids cannot get care. Access to competent psychiatry is the problem. It's not a lack of stigma. Okay. It's not a stigma problem. It's a medical problem. So I don't use that word and you're right. It's perception. And it probably starts with education, even middle school and high school. That's probably where it's going to start. It's also going to require educating people who work in both law enforcement and public defenders and our criminal justice staff. It's really going to start with education. We need to bring back the truth, not a watered down version that everybody has a mental illness because I had a bad day at work today. We need to bring back true science into our discussions and our understanding. Yeah, I think that's a great thing is understanding for sure. Now what do you think is important? What do you want to tell the listeners about your organizations that you're doing and of course what you're trying to do for the future? I think if I had an audience that was everybody, I would just suggest seek understanding. We're all on Twitter now called X. We all see flashy headlines. We all see that the sensationalized violence in the media. There was a story that ran on one of these news channels about a young man who did not get his medication in jail. And so he plucked out his eye and he was successful in suing the jail for lack of treating his mental illness that caused him to pluck out his eye. I know families whose loved ones have plucked out their eyes. And that is complication that is not uncommon from someone experiencing severe visual hallucinations that they can't discern from reality. So they pluck out an eyeball. And the social media comments on that news story were incredible to me. Wow, what an idiot. I can't believe he plucked out his eye and taxpayers have to pay for this now. That was the attitude. There is no understanding that these are serious medical conditions and that behaviors can be caused by these types of problems. I attended a sentencing hearing for a young man who is currently in prison for killing somebody. The cause of this tragedy was poorly treated schizophrenia. A psychiatrist made a mistake on a diagnosis. It gave him a wrong medication. It made the problem worse and the results were tragic. The prosecution's argument was schizophrenia doesn't cause violence. So I mean, that's just a blatant lie and misinformation. And the family was just under the belief that this person was an evil monster and not to take away anything from their terrible loss and hardship. But I wish I could turn that anger and that heartache for the real problem that will lack of treatment and a lack of access to care and a system that has failed this family. And we see caregivers. We've had families die parents, especially die because of this terrible lack of care in their loved one. You know, Crystal Fox is a great example, but there's others. A young man Alejandro Gonzalez in Arizona, you can look up the headline, you know, had serious mental illness was discharged from jail, probably with a day of medication and very likely no support. Runs out of his medications, kills his mother and, you know, who's to blame there? It's not the young man that got a no fault brain disorder. So education is so desperately needed at the society level. Again, we understood this in the 1960s. We understood not guilty by reason of insanity. And we took care of these individuals. We understood the danger. Somehow that's gotten lost. That lost for a lot of reasons. Yes, I cannot disagree with you there whatsoever. It seems like everyone is just so out of touch now. Everybody's out of touch. Yeah, it goes from the people that make the laws all the way down to the people that supposedly uphold the laws. Yeah. Then you add in the medical system and all the other entities that deal with it on a daily basis. There's just no continuity at all. And there, you know, not everyone is out of touch. There are some very skilled doctors and psychiatrists and case managers and people working to change this from the inside in our own Arizona Medicaid office. We have just some very dedicated professionals working hard to try and change this change perception, change the focus, change the priorities. But lawmakers have to listen. They have to be willing to fund this. They have to be willing to in states where the involuntary treatment criteria is too lax. They need to support that. And usually it's a matter of education. Yes. Again, I cannot disagree. Education is the foundation of everything. Well this has been great. Great conversation. Great information. I really appreciate you taking the time to join us today. Yeah. You're doing a good job. We're grateful that you're even covering these things. Oh, it's my pleasure. I really appreciate it. Thanks again. 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. We hope you enjoyed the conversation. Our inspiring guests, the show. You are not alone in this world.
