Family Stories and Top Five Grassroots Changes in Serious Mental Illness: Dede Ranahan, part 2 (Ep. 5)

 Top Five changes we Need - and More

#1 Reclassify SMI (Serious Mental Illness) as a physical/medical, not behavioral condition - we need to fund more research : and Why is there no cure for SZ?

#2  - HIPAA (discussed in more detail in Episode 4)

#3 - Repeal the IMD Exclusion (would make more hospital beds available for SMI)

#4 - Full Continuum of Care

#5 - Decriminalize SMI

Also : Early signs? Early Detection. 

A state level change that is helping families in MN

Transcript

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SPEAKER_01 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. Finally, a place to talk about the truth. So welcome to part two of our interview with Dee Dee Ranahan, the author of This Book That Is Going to the White House in Droves and to Senators and Representatives tomorrow was yesterday. Explosive first-person indictments of the U.S. mental health system, mothers across the nation tell it like it is. And please listen to part one to hear some of the stories that have affected us. If you are dealing with a serious mental illness in your family, I'm sure they will resonate with you as well. We want to continue this talk about this grassroots five-part plan to address SMI or serious mental illness. So I'm here obviously with Mimi, Miriam Feldman, Mindy Gryling, and Didi Ranahan, the author of this book, and also the author of Sooner Than Tomorrow, which is kind of a catalyst. So you have many suggestions brought by many advocates. And on a vote, number one

#1 - Reclassify SMI

SPEAKER_01 1:20

was reclassify serious mental illness from a behavioral condition to what it is, a neurological medical condition. And you suggest why this is important and what presidential action should take. So can you say more about that, Dee Dee? And why is that so important? Why should we reclassify it?

SPEAKER_03 1:44

I was amazed and pleased that this bubbled up, that it's in here and it bubbled up to the top, got the most votes of any of these.

SPEAKER_01 1:52

More than HIPAA reform.

SPEAKER_03 1:54

You know, it is a brain illness. And behavioral just has such a stigmatizing connotation. You know, you just need to get your act together, you need to pull yourself up by your bootstraps, so forth and so on.

SPEAKER_01 2:07

Snap out of it.

SPEAKER_03 2:09

Snap out of it. Reclassify it as a brain, as a physical illness, like any other physical illness. And hopefully, this would open up one of the things it might do is open up more funding for research since it's a physical condition. Um, we suggest that there should be a cabinet position for serious mental illness. I framed it in this White House project as a task force. I thought a task force would be easier to set up quickly than a cabinet position. So more money for research and to take away some of that horrible propaganda that, you know, you're just not living up to your full potential. So I think it will be a hard thing to do. There's so many turf wars in our mental illness system, and we have turf wars between psychiatrists and psychologists and between families and peer groups. I mean, I list in the back of in the conclusion of that book, and I'm sure I didn't include all of them, examples of all these tensions and competitions within the system. So trying to get this reclassified as a physical illness, I just see that as a huge fight because I I'm afraid the behavioral folks will feel jeopardized with whatever they think the authority is that they have. So none of these would be easy, but every single of those 20 items in my mind requires a whole intensive, detailed plan of its own.

SPEAKER_01 3:51

Which is why sometimes it doesn't get done. And we've got a pandemic we're dealing with. But I know, Mimi, you wrote this incredible guest blog post on Pete Early's blog about why

Less Stigma, or Better Treatment?

SPEAKER_01 4:02

isn't anybody working toward a cure? And I think this ties right in with this. You know, there isn't enough research because it's not ranked as a neurological medical condition, it's considered behavioral. And do you do you feel this has anything to do with that issue, Mimi?

SPEAKER_00 4:18

About Yeah, I do, um, in a lot of ways. I think that one of the things that we need to do as activists and advocates is we need to really delineate between serious mental illness and mental illness. Because SMI is different. And I, you know, if you uh take a look at where the money's going, it's really in inverse proportion. The most money is going to the least serious conditions, and the very least, if not none, ends up on the serious end of the spectrum. And that needs to be reallocated, that needs to be reconsidered. And I think although we all believe in fighting stigma and we all believe that this is important, it's not the most important. You know, the most important is treatment and hospital beds and um the right medications and research and all these things. And I think at this point in the zeitgeist, too much attention is being spent talking about stigma and it's okay to have feelings. And not that that isn't important, but the rest is being neglected. People with serious mental illness are dying in the streets and in the jails with nowhere to go and no treatment. And what my article for Pete Early was specifically about was the fact that with schizophrenia, the attitude of the medical profession is generally once the patient is medicated to a point of compliance where they're no longer a threat to society or an imminent threat to themselves or others, they're done. They're done with treatment. Imagine if once somebody had cancer and had the surgery to take the cancer out, they were sent home and said, Don't come back and bother us until you're back at stage four. Basically, what's happening here. People are given no option and no treatment to bring them into having a meaningful life. And that is unacceptable in a civilized world, as far as I'm concerned.

unknown 6:29

Okay.

SPEAKER_03 6:30

Well, the other thing that goes along with this, we need a department of mental health and a department of mental illness because they're two entirely different things. And if we got it reclassified as a physical illness, maybe we'd have a better chance of getting to that point.

SPEAKER_01 6:46

Okay. So number one on the hit parade is to reclassify SMI from a behavioral condition to neurological. We spoke about number two, which is very close second, that the need, and remember, we're talking about federal changes that need to be made. In our next episode, we'll be speaking with Lynn Nanos and specifically more about changes within each state that can happen. But these are really important.

#2 - HIPAA Reform

SPEAKER_01 7:15

Reform number two, the HIPAA Act, Health Insurance, Portability, and Accountability Act. We talked about that a lot in part one. But just if you haven't read the book yet, why is it important? Because overly strict HIPAA laws make it extremely difficult for families and caregivers to partner in the treatment of their loved ones. And in each of our cases, we are MRQs, mothers who refuse to quit, striking that balance of letting go and stepping in so that all of our children remain as successful as they can be. But particularly with a mental illness, it becomes a more delicate dance. HIPAA makes it harder. It results in important life-saving medical information gaps. So if you reform it, family support will be strengthened, reducing the chance of relapse, homelessness, imprisonment, and death. So we kind of covered this in part one. Number three, though,

#3 - Repeal IMD Exclusion

SPEAKER_01 8:12

is to repeal Medicaid's Institute for Mental Disease Exclusion, IMD exclusion. Who knows about that? We all do.

SPEAKER_03 8:24

But you know, we we know about it because of the life we're living, but it's kind of hard to, I think it's hard to try to explain it to somebody on the street who has no experience with any of this, that it's a limitation on beds and an institute of mental disease that has more than 16 beds, and you have to be between 21 and 65. I mean, it it gets a little in the weeds. And this one, Mindy, to your question, you know, they had to send my son 60 miles away out of county because there were no beds in my county. And that's just one family example, and it happens all the time.

SPEAKER_01 9:05

There was a story in the book about someone in Texas whose son had to be sent to Florida to find a bed.

SPEAKER_03 9:11

Yeah. Although I have been reading, I think of the things in the top five, the repeal of the IMD exclusion. I don't know, correct me, Mindy, you might know more, is getting some play and discussion.

SPEAKER_02 9:23

Definitely getting some play and discussion. And Nami is supporting it, and they are by their own proclamation recently trying to be all things to all people, dealing with mental health issues, mental illness, severe mental illness, and they support this. So I think it's come of age, and it's come of age because it's just come to a head, you know, and COVID has exacerbated the whole situation of people that maybe don't have serious mental illness, but they have problems because of COVID, and then they're looking for help too. And then that makes there even less beds for people who have serious mental illness. So I think it's it's finally arrived because it's affecting everybody. And really, it was, I think, you know, probably started as a best thought that we didn't want people in large institutions, but it's resulted in a perverse outcome, which means there's just not enough help. Our son was actually in a large board and care in Minnesota that was very clean, very well run. It wasn't a healthy place for him as he got better, but it was a safe place where he got good care for almost two years. And I definitely preferred that to him being on the street. I can tell you that.

SPEAKER_01 10:41

So the IMD repeal would increase the availability of psychiatric inpatient beds. That would be the outcome. And the presidential action would be to work with legislators to repeal it. Good idea. I mean, my son, the first year he was hospitalized frequently, it was five hospitalizations in a row. And we had private insurance at the time. And so once the 45 days were up, we had to beg for charity to pay for another weekend where he had to be, we had to go to the hospital and say, we can't afford this. And this uh some group of nuns helped us. I don't even know how it got paid. And then he ended up under state care, and then he ended up in a transitional living because they couldn't find a bed for him in group home, where for seven months they kicked them out the door at 8 a.m. and said, go do something constructive and come back at 5 p.m. And what did they do? They slept on the couch, or many of them went and scored drugs. This brings

#4 - Full Continuum of Care

SPEAKER_01 11:36

us to the next thing, which is continuum of care, because psychiatric beds are only the beginning of the journey of trying to reclaim your life. So, number four is to provide a full continuum of care, which would ensure that SMI patients get early intervention at all stages, long-term, oh my God, this sounds like such a wish list, you know, long-term care when needed, follow-up treatment, medications and therapies when they're released. This would reduce visits to jails, ERs, hospitals, homelessness, and morgues. It provides lifetime management. What world would that be? That would be amazing.

SPEAKER_03 12:22

I have a little sidebar in that is the Olmstead law, which can uh some states or lawmakers sometimes that gets used to argue that people need less expensive, maybe insurance companies less expensive care than they really do need. And they argue Olmsted says it needs to be least restrictive care, and and that's the argument, and it gets muddled. So um nothing is straightforward.

SPEAKER_02 12:54

I have one question on that one, because you mentioned um, Dee Dee, the different groups and how they can be pitted against each other and so forth. And one of them that uh kind of breaks my heart is the adult mental health system and the children's mental health system, as if somehow one needs to be funded and one doesn't, or one group doesn't care about the other one. But yeah, children are going to be adults, and all of us who have adult children, we were dealing with teenagers who were having problems long before they were adults. And so I'm assuming then, and I want correct me if I'm wrong, that this continuum of care, early intervention would include young people who are developing serious mental illnesses as well. I'm I think it's a serious mental illness that cuts across all ages. Right. And so when some people think that the serious mental illness group doesn't want to include children, I think the misunderstanding is that the serious mental illness groups want people of all ages, if they're dealing with serious mental illness, to be intervened for to get help as early as possible. Is that correct with this one?

SPEAKER_03 14:15

That's the way I read it.

SPEAKER_02 14:18

Thank you.

SPEAKER_03 14:19

I don't think I think Mimi, you intimated this in your book about Nick,

Early Detection - are there signs in childhood?

SPEAKER_03 14:25

but and you had asked me, Randy, about you know, before Pat got sick. I don't think there was a before for him. I didn't know it then, but knowing what I know now, I think he was born with this illness. Um, he was premature, he didn't thrive, he didn't gain weight, he had terrible uh uh separation anxiety, he had sleep issues, every milestone was a real struggle for him. He had nightmares, and the problem is a lot of these things just mimic the terrible twos or whatever phase your child is supposedly in. I think he was dealing with this, and it got worse, of course, but I think he was dealing with it his entire life. And I know when I worked at uh San Francisco State at the time there were some professors there who were putting together programs on infant mental illness. And at first I thought, what? But I'm a believer that this doesn't necessarily just start when you become a teenager or young adult. That some for some people I think, because some people might have an ep something that kicks it in, but I think many are suffering longer than we think.

SPEAKER_02 15:45

I think that's one topic that people like us and other people advocating for those with serious mental illness need to talk about more because it's a way to um put us in a negative light, I think, by some people who say we don't include children when when I think you just said uh very eloquently that we do, our own children didn't just get sick when they turned 18.

SPEAKER_01 16:10

I struggled with that as well. Although my son when when I first took family to family, they spoke of it, and things change all the time, as sort of it's there. Like Alzheimer's is there in the brain, waiting to blossom when you hit a certain age, if you have it. We don't have it anywhere in our family that we know of. There's some question marks. It turns out my dad was a sperm donor, which I just found out uh a year ago. So I don't know. From what I can tell, Googling that family, they're fine too. But that it's sort of a time bomb that may or may not go off, but not through any fault of their upbringing or behavior. My son had anxiety, but not crippling at all. Like everyone just thought he was uh just a little bit unfocused. So he didn't have a lot. He wasn't premature, he thrived, he was kind, he was artistic, he was, I'm sure we all our sons were brilliant. That seems to be a you know, high IQ seems to be part of the deal. He was the sweetest boy. I had no idea ever that it would turn into this. He just had some, he was called ADD-ish. So, however, in high school, as Mimi has famously said, you take a list of what teenagers go through and beginning signs of gradual onset of mental illness, and it looks kind of the same until the point where you may grow out of it, until my son's behavior got like, what? Are you serious? It just got too, it just like burst past the boundaries. But it still took a couple of years for me to even consider that it might be something other than drug use or ADD with the challenge of high school. In terms of early detection, if someone had been able to spot it and say, you know, this could be, let's keep an eye on this. And if the psychosis was caught earlier, I think that would have made a big difference. And this is all part of the full continuum of care. You don't want to panic a parent who doesn't need to be panicked. Not every child with anxiety turns out to have an SMI. I have a grandchild with some anxiety. They can grow out of it, they can be loved out of it if it's simply a behavioral issue. But if SMI is there and hovering and is going to blossom, it's going to blossom.

SPEAKER_03 18:40

And I read once, and I don't know if it was true, an article that said that sometimes children with ADHD, if they are heavily medicated for ADHD, and then they go on to develop bipolar later, that it actually makes it worse later. Now, I don't know if that's scientifically true, but we've just got so much to learn about more money for us for the money in the research.

SPEAKER_00 19:09

You know, I think we walk a fine line with this too, because the thing is there was a terrible backlash at one point where anytime that they were calling, you know, they would there was a joke that they were diagnosing boys as having ADHD and having you know diseases when really the only disease they had was being a seven-year-old boy, and that's how seven-year-old boys act. And so, you know, we run the risk of diagnosing and over-medicating young kids. And but I think that the answer always to all of this is knowledge and education and more research because the because they still really don't know. I mean, that's the whole thing. So there are people, there are people like your son, Didi, who you can see this now when you look back to it. My son, you know, yeah, some amount of anxiety, but that's it. He was like the perfect kid till he turned 16. There would have been nothing to notice, but somewhere in between, we need to all have an awareness and an education about it so we can gauge it and we can monitor it and know when to step in. Because I don't think there's a mother among us who didn't wish she had done this or that five years earlier.

unknown 20:22

Right.

SPEAKER_02 20:23

There's so much to learn. And when I once toured a special education facility where there were two young children who were elementary students who were hearing voices and just in agony because we haven't learned yet how to have all these adult medications work for children. And then I've also known that African American men are overdiagnosed with schizophrenia because people are looking at various factors that or just assuming the worst. I'm not sure what it is, but I wish we had more of a science when we're treating mental illness.

SPEAKER_01 21:03

I remember hearing at a conference probably five years ago that in terms of brain research and serious mental illness research, we are where they used to be at heart disease. You either have a heart attack or you don't, or cancer. There was no which chemo do you want? It was so there's a lot to be done, certainly. And believe it or not, we're we're running out of time in part two. So I just want to bring up number five, which is a big topic as well, but decriminalizing

# 5 - Decriminalize SMI

SPEAKER_01 21:36

serious mental illness. And I'll just read what Didi wrote. People suffering with other neurological conditions like Alzheimer's and dementia, they can get treatment promptly without being kicked out of their homes to wander their streets until they're arrested and put in jail or prison rather than a hospital. Serious mental illness is the only disease where the doors to treatment are shut unless a crime Is committed. This is discrimination with the disastrous results we see in our country today. Homelessness, incarceration, the disintegration of families, and as evidenced in many of the stories here, death. What could the president do? What can be done on a federal level? Work with legislators to change must be a danger to self or others criteria. Work with legislators and others to change involuntary commitment criteria. Redefine it in objective terms based on scientific medical need for treatment. Psychosis, like a stroke, is a traumatic brain injury and needs immediate treatment for the best outcome. Anything to add to that? And the list that's I that's just the top five on the list, by the way. There's many other changes that we need, but see what I mean.

SPEAKER_03 22:54

Each one of these bullets needs a whole task force all by itself.

SPEAKER_01 22:58

But um it does include education, pay attention to supportive housing. Uh it's a wonderful list because it's concrete and has steps. The the best thing for conflict resolution is saying, we have a problem, and here's what I suggest, rather than just this isn't just all moaning and groaning. This leads to what can we do? Anything to add about the decriminalization need? Did any of your sons get close to being arrested ever for their symptoms?

SPEAKER_02 23:27

Yes, I this is one of my favorite ones. This is the one I'm on the biggest tear about right now, decriminalization. And I'm the president of our local NAMI affiliate for our county. And we have this is one of the ones we're interested in. We've had a police listening session. Um I'm I've been advocating for more mental health courts or earlier intervention than that. Minnesota actually just passed something that we don't have time to talk about tonight, but we have an earlier intervention than meeting the civil commitment standard. It's a county option. So it's going to take some work to get the counties to opt into it. It's an unfunded mandate, but it means that when families call, they can't be told like this story I read from the crisis team. There's nothing we can do. They're not dangerous yet. There's nothing we can do. Instead,

One state-level change that helps in MN

SPEAKER_02 24:19

if the county has opted in, a family, any of us could call the county and say, my child or my husband or whoever is getting sicker and sicker, and I'm worried that something bad is going to happen, then the county is duty-bound to intervene. So that's one thing that we just passed this past year here in one state that would directly apply to this number five. And if it works for us, if counties opt in or if the state funds it and then they have to do it, either way, it's a model for other states. So that's one thing the federal government could do is look at what are the best practices in each of these areas that states are doing, and then they've got some models that they could scale up nationwide.

SPEAKER_03 25:07

And that's part of the I think it needs to be a national plan with standards that apply everywhere, but then you get into the tension between federal jurisdiction, state jurisdiction, local jurisdiction. Everything is so nothing is simple. This one is one of my favorites because I have one of the women in my book, her son was in pr is in prison, bipolar, and uh he was down south, and then they transferred him up here to a prison that's near to where I live. And through conversations with her, I started going over to once a month driving to visit him. And you know, I I just read a statistic that half, probably half of our inmates have a mental illness. This is a young kid, and he has a serious mental illness, and he's in solitary most of the time because he'll think the devil is telling him to do something, and he punches a guard, he's in solitary. Like that's a big help for someone who has mental illnesses anyway. So I had I know this person who's living through this, and every time, and now I can't go see him because of COVID, and I don't know how he's doing at the moment, but half of the prisoners in the country are like him and have a serious mental illness. I don't know.

SPEAKER_01 26:32

They don't know what else to do with them. And we'll we'll be talking with uh Lynn Nano.

SPEAKER_03 26:36

That's part of the IMD thing. We don't have beds, so we send him to prison.

SPEAKER_01 26:41

Yeah. The the most difficult to treat patients, according to her book, Breakdown, which we'll be discussing next time, are often turned away because they're too expensive and difficult to treat. They'd rather take someone who seems like they can be, you know, put back in treatment in five days and set loose on the streets. They'd rather, it's cheaper for them to not deal with the seriously, seriously mentally ill. And they are the ones that often wind up in jail. I mean, in Connecticut, I was fortunate enough to have crisis intervention trained police officers the several times that they had to be involved. And they were, I have to say, amazing, amazing. If it weren't, and we can do a whole show on CIT because it's a a vast difference. I we are so lucky that we had those officers because otherwise Ben would be could be in jail easily. There are several things that he did shoplifting chips in the middle of CVS, but he didn't shoplift because he didn't leave. He was just hungry, sat down in the middle of the store and ate them. The police officers saw what it was, but it could have turned out very differently. And it wasn't dangerous, he wasn't violent. I wasn't in the position of maybe he would get shot if they had reacted differently and not kindly. Who knows? Like you just don't know. You live with this wild card.

SPEAKER_02 28:09

You read about it all the time. And the police, no matter how well trained they are, their hands are tied to do anything if the hospital they take people to the hospital, wait a very long time, and then often the hospital doesn't admit them. Right. And then they're they think about that the next time they've got a busy night, how many people do they want to take and wait? And then they're they're not as apt to do that. And so they they become part of the problem if they say there's nothing I can do either, because they know the last 10 people they took down there couldn't get a bed. Our son has been in the criminal justice system, and that is just a new level of pain in the mental health system. You've got everything else to be guilty or sad about, and then you, your son, who's very, very sick, is a criminal. I mean, that that is uh beyond the pale, as far as I'm concerned. I just talked to a mother um this past weekend. That's one thing I think we all know from writing a book. You hear from people then all around the country, and her son is an 18-year-old who no one would help her get him any help. And so um, he committed a crime by stabbing somebody. His voice has told him he should do that, and so he's awaiting trial while being in prison, and he's only 18 years old and a sweetheart of a boy all his life until he became psychotic. So this one is these are all so important, but this one is is one I highly value being in here.

SPEAKER_00 29:42

You know, I just would like to mention something for other people. I am plugging something that has nothing to do with any of us, but it was so enlightening. There's a documentary that I believe was on NBC called Ernie and Joe Crisis Cops, and it's about two, oh no, it's HBO. Okay, and it's about two policemen who really took it upon themselves seriously to help the mentally ill and change what happens, and it's pretty astounding. It's HBO and it's Ernie and Joe Crisis Cops, Crisis Cops.

SPEAKER_01 30:16

I'll put the I'll put the link on the YouTube channel.

SPEAKER_00 30:18

Yeah, okay because it it really it shows you so clearly how little it takes to make a huge difference.

SPEAKER_01 30:27

I I got to do a uh drive-along, ride-along with with a police officer, and it was very enlightening. And in in this particular town in Connecticut, if there was a mental health crisis in a family, they went back the next day to see that make sure the family was okay.

SPEAKER_00 30:42

Yeah.

SPEAKER_01 30:42

I mean, there's there's so so a lot of work to be done. And it starts with our stories. Final message from each of you that you would like to say to either a family, a caregiver, practitioner, a lawmaker. Mine would just be tell your stories, you're not alone. Together we can make a change. Mine would be do what Didi's doing.

SPEAKER_02 31:08

Speak out, be loud, tell your stories, advocate, don't give up.

SPEAKER_03 31:13

All of that. I would like to add that practitioners, families need to speak out. Practitioners need to listen. And often sometimes practitioners, I think, are as trapped in the system as families are. So they need to work together to fix this. I almost said a four-letter word. Anyway, uh, and legislators. My top irritant is well, we have lots of important issues to address. We'll get to this later, and that's part of where the title came from. Now is the time to address this. This issue is as important and is impacts, it impacts everything. It intersects with all kinds of other issues. So don't tell me after we get climate change taken care of and COVID and racial injustice and income inequality, then we'll take a look at this. No, we need to take a look at it now.

SPEAKER_01 32:11

Thank you.

SPEAKER_00 32:12

Mimi? Well, you know, you just touched on something, Dee Dee, that's my latest harangue, which is what's happening now in our culture is that intersection of so many things, and it's at this crisis point, and it's Black Lives Matter, and it's defunding the police, and it's it's civil rights, and it's human rights, and it's all these different things, and they all intersect with mental health and mental illness. This is part of all these issues, and now is the time when we're looking at all of these things and saying this is a crisis, and we have to do something to keep knocking on the door and reminding everybody that mental health, mental illness is part of every one of those issues.

SPEAKER_01 33:00

All right, good words. Thank you. This is Schizophrenia, Three Moms in the Trenches, on our wonderful guest, Didi Ranahan. Thank you so much. See you next time. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, MindyGryling.com, or RandyK.com.