Mental Health Advocates

(music)

Mental health impacts Iowans from all demographics and all political stripes. We'll sit down with two advocates to talk about Iowa's mental health system and their experiences on this edition of Iowa Press.

(music)

Funding for Iowa Press was provided by Friends, the Iowa PBS Foundation.

The Associated General Contractors of Iowa, the public's partner in building Iowa's highway, bridge and municipal utility infrastructure.

Elite Casino Resorts is a family-run business rooted in Iowa. We believe our employees are part of our family and we strive to improve their quality of life and the quality of lives within the communities we serve.

Across Iowa, hundreds of neighborhood banks strive to serve their communities, provide jobs and help local businesses. Iowa Banks are proud to back the life you build. Learn more at iowabankers.com.

(music)

For decades, Iowa Press has brought you political leaders and newsmakers from across Iowa and beyond. Celebrating 50 years of broadcast excellence on statewide Iowa PBS, this is the Friday, April 12th edition of Iowa Press. Here is Kay Henderson.

(music)

Henderson: On this edition of Iowa Press, we are joined by two Iowans who have become advocates on mental health issues after personal experiences. Leslie Carpenter is from Iowa City. And Kali White Van Baale is from Bondurant. Thank you both for being here to share your perspectives.

Thank you.

Thank you.

Henderson: Joining the conversation are Dave Price, he is the Political Director for the Gray Television stations in Iowa. And Caleb McCullough is the Des Moines Bureau Chief for the Lee Enterprises newspapers led by the Quad City Times.

McCullough: So, we're talking about Iowa's mental health system today. How did both of you get involved in mental health advocacy? Leslie, why don't you start.

Carpenter: Sure. So, my husband and I have two adult children, one of whom lives with a very severe schizoaffective disorder and he has been sick for about 17 years. Over those 17 years, we came to experience every aspect of the mental health care system and every part that wasn't functional. And gradually through NAMI I became involved in advocacy and then we also founded our own organization called Iowa Mental Health Advocacy. And then eventually now I also on a part-time basis work for the Treatment Advocacy Center, which is a national non-profit, pretty dedicated to removing treatment barriers for people with very severe mental illnesses.

Henderson: Kali?

Van Baale: So, I got involved after April 2017 when my longtime neighbors, who lived right across the road from us, were tragically murdered by their very mentally ill, undertreated son. It was the Nicholson family case and it was Mark, Charla and Tawni and their son Chase, who has the same diagnosis as Leslie's son and was severely undertreated and desperately needed hospitalized at the time this incident happened. And once I heard about the family's story of how long they had struggled, how much they had struggled to get help for him, I felt really compelled to get involved. And I'm a writer by trade, so I did what I know how to do best, I started writing about it. And that is how I ended up meeting Leslie, connecting with so many other mental health care advocates in the state and continue.

Price: Governor Reynolds really on a couple of levels has been reorganizing, trying to reorganize the state's system. I'm curious what you both make of what this process now, this kind of redesign, merging some entities, how is that working? And is this the right way to go?

Henderson: Leslie, start with you.

Price: Complicated question, sorry.

Carpenter: It is a complicated question. And to her credit, Governor Reynolds has been working on this for several years in different ways. With the reorganization and combining the treatment for people that have both serious mental illness and substance use disorder in a more cohesive manner, it's the step to go in, it's the right direction.

Price: But super hard.

Carpenter: Super hard, lots of really smart people in HHS leadership to lead the way and guide it. And yes, it's a little scary for providers, for families that have loved ones that need care. But we have to kind of hope. You learn to cling to hope when you are trying to take care of somebody who is that sick. You have to kind of trust the process and hope that it will be effective in the long run. But I think it is a several year process.

Henderson: And Kali, if I could interrupt here, we're talking about mental health regions is what they're called, and that is various ones around the state and they are supposed to help people who cannot provide the care on their own based on their own finances and then they have these substance use regions that help people who can't afford to get substance abuse treatment. So, what is your view of this?

Van Baale: So, in the years since the Nicholson murders happened, I now have a family member who struggles with both a serious mental illness and an addiction problem. And what I have seen him go through is that he can't get hospitalized for the mental health aspect because he's not sick enough, but he can't get into treatment for the addiction problems because his addiction is not strong enough, and the two never work together. So, as a result he has ended up homeless and with no help. So, I think this more unified new structure that they're looking at, as long as it may take to happen, I do think it's moving in the right direction because it's these types of patients who are literally just falling through the cracks.

McCullough: So, what is your impression, I guess your first impression of this proposal when you saw it proposed from the Governor? How do you think it will go in the long run?

Carpenter: I think in the long run it will be okay. I think it's something that needs to happen. I think the process along the way is painful for people working within the system. If I were somebody that was administering a mental health agency or a substance use agency, I'd be nervous about are contracts going to be in place? Are we going to have payments that work? And then also, how will we truly be integrating the care? And of course, the new, they are applying to four certified community behavioral health systems, or centers I should say, demonstration state grant. That work is also in process and it is very much the same kind of thing. They're trying to get these community behavioral health centers to provide integrated care with all of those considerations for the medical, substance and mental illness issues.

Henderson: Kali, Leslie has mentioned a couple of times the timing, or the timeline. This system is in the bill that is before the legislature, supposed to start on July 1st of 2025. Is that too soon?

Van Baale: In my opinion, it's already too late. We should have had a less convoluted system years ago. We already have Iowans and families who have been suffering and have suffered and are struggling through the system we have in place. So, I personally think a revamping and restructuring can't happen fast enough.

Henderson: One of the things that the Governor said when announcing this system that there's $20 some million dollars sort of floating around that would have been spent otherwise on the system but hasn't been spent. And that may be redistributed. But there's no more new money for treatment. Leslie, is that a flaw?

Carpenter: I don't think so. I think it has been one of the frustrations, that was one of the things that I learned when we first started trying to get involved in figuring out what to work on. I was infuriated when I learned there was that much money sitting in these regions not being spent when I know there's people desperately needing the care.

Henderson: And this would be the mental health side of it?

Carpenter: This would be the mental health side of it in the MHDS regions. So, I'm excited about HHS centrally at the state level being able to administer those funds in a more effective manner for the people that really need that level of care.

Henderson: Kali, do you have an impression?

Van Baale: I think streamlining the funding source will make some of it so much more simple, absolutely.

Price: Does this, by doing that does this get at our challenge of we're still a largely rural, small community state and most of our growth are to the bigger metro areas -- but does this get at the challenge of providing statewide care for folks where they're not going to have to travel hours and hours away from home?

Van Baale: Not yet, I don't think so. So, interestingly, my older sister is now a licensed therapist in Iowa but worked for the 988 national crisis line and when I interviewed her for an article not too long ago, she literally had to draw a flow chart of the contracts of who holds what contract for what area and how that filters down to the different agencies in Iowa that handle all of the different areas. It's so confusing. It's so confusing.

McCullough: And, as you've already mentioned, many people who have these mental illness diagnoses also have substance use disorder and have that dual diagnosis. I guess, what is the struggle of treating those together? I know you both mentioned you think it's a good idea to take that approach. How does that make this treatment, I guess how does it affect how you approach treatment? Leslie?

Carpenter: Yeah, that's a very good question. So, you need to be able to address both the mental illness from a medical standpoint in terms of managing it with medications and other therapies that are really needed. And all too often over the course of time, people get only that piece of it and it's not even getting addressed their substance use needs. So, to have them actually integrating and having that happen at the same time, maybe at the same agency or the same facility, depending upon if somebody is outpatient or inpatient, that would make a huge difference because it's much more of the whole person approach, which is how we approach almost every other medical kind of problem that we have in our society.

Price: We don't have enough beds. We are one of or the worst in the state. But we also don't have the staff to help folks even if we did have the beds. What is going to help the staffing aspect of this so we get more qualified people into the industry?

Van Baale: Well, I think paying a better working wage. Back to that 988, that crisis counselors who answer the 988 calls and chats, they barely make minimum wage. Some of the salaries they are paid for a year is barely above the poverty line. So, to attract qualified excellent counselors who can handle that type of stressful demanding work, they need a salary to attract them.

Carpenter: I'll second that. And we need that both from the federal level and the state level and there have been changes, they're doing regular reviews of rates, which has been really, really helpful. But also building out the system and adding those beds and adding also the long-term, what we call housing that heals, for people that don't need to stay at a hospital forever but really need long-term residential care with 24/7 staffing to keep them healthy. If you can build out the whole system, it's a lot less frustrating to work in the system and so you'll see less burnout, more retention and that helps. You have to kind of work at it all simultaneously in my opinion.

Henderson: Leslie mentioned a few moments ago that Governor Reynolds has been working on this issue for a few years. The first bill she signed was about a children's mental health system. Kali, do we have one?

Van Baale: No, we don't. It's -- Leslie and I actually worked on that legislation together, that was one of the first years I got involved in legislating. And no, we don't. That's the short answer.

Henderson: What is the answer? What is the answer to actually coming up with a system?

Carpenter: Continued work on it. And HHS is extremely dedicated to working on that, but it takes also the advocates to keep pushing to try to build that out. It is a process. It's much harder to stand up new services, new programs, new agencies than one might realize. We started a new assisted outpatient treatment program in Iowa City and it took me five years to get the stakeholders on board, to secure funding and get that started. And a lot of people first coming into this system, they don't realize how much work it is to build out services.

Henderson: Caleb has a question about how sometimes people are first introduced to the system.

McCullough: Yeah, we hear a lot about emergency response to mental health crises and how that can be handled and is handled. There's talk of increasing de-escalation training and things like that. So, what do you all think is the best way to respond to mental health crises? Kali?

Van Baale: Well, I think de-escalation training is first and foremost critical. I also think having -- we were talking about this more unified system where agencies, hospitals, different entities are working more together so that if someone comes into the ER there is like a flow chart of where they can be referred to for next step services. I don't think that is utilized. I just don't think that's in place yet.

Carpenter: And I'll add that ideally, we do want people using 988 so we can get a mental health or a medical response for that illness just like you would if you were calling for a heart attack. I love to see the mobile crisis units that are available in some parts of the state so that you have a mental health professional going out, helping in the situation. In other situations where you do need to have law enforcement involved, we love the co-responder model where there is both a mental health professional and people that are trained in crisis intervention team training. That makes a huge difference and lowers the risks for everybody involved.

Henderson: So, I hear you saying you should call 988 first rather than 911.

Both: Yes.

Henderson: Why?

Van Baale: It's the national designated number for mental health crisis and it will connect callers either by phone or by chat, text. So, my sister worked on the text side of it with this new generation who is very text savvy and it will connect them directly with a licensed trained professional counselor to help talk them through whatever their crisis is and connect them to services in their area.

Price: And, in theory, I've heard professionals talk about this could be one of the greatest advances and one of the very few positives we can point to about this global pandemic we've gone through is that people are now perhaps more comfortable with technology and especially for folks who live in smaller communities, this may literally be your only way of getting a quick connection to some kind of provider.

Van Baale: Yes, and I think one of the next challenges for 988 is just getting the word out. One of the kind of surprising things my sister said about 988 was she would take a call, take a chat and go to connect them to whatever services were available in their area only to be connected with a police department who had no idea what 988 was, who she was or why she was contacting them. So, there's a little gap in sort of knowledge and information with the crisis line unfortunately.

Henderson: One of the things that we hear and we've heard at this table before as we have done programs on this subject is there aren't enough inpatient beds. In a free market system, one would think if there is a service needed people would rush in to provide it. What are the factors that are keeping hospitals from providing inpatient beds, Leslie?

Carpenter: Yeah, it's reimbursement is a big piece of it, not being paid enough so that they can be functional. They are having a hard time with staff recruitment and retention. That is a piece of it. It's hard to get through the CON process. We just helped to get another one for coming into Grinnell. So, we're thankful for that. But it's all of those factors. You don't make a huge amount of money providing mental health care and let's face it, that's a factor. And you're absolutely right, we are 51st in the country with only 64 adult state beds and 32 child beds at the state level. And if you take a look even at the private beds, we only have 566 adult beds staffed and 125 child beds staffed. We are severely under bedded.

Price: Leslie, when you talk, you are so measured, yet what your family has gone through with your son obviously has been a challenge, which is a ridiculous understatement here. Can you talk about, if you're comfortable talking about some of the challenges connecting your son to the services he needs? Doesn't that underscore how challenging this is to solve? Because people's individual needs can frequently be kind of unique and especially complex?

Carpenter: Yes, to all of that. It is very difficult. And part of it is the laws that dictate how we access care. Our son was in active psychosis, but the doctors would overinterpret the commitment law and we can actually get somebody admitted sooner, but because of the lack of beds they only admit people if they are a danger to themselves or others. So, their questions were, is your son suicidal? Is he homicidal? And unless you could say yes to those, you couldn't get the person into the hospital when you knew the voices were telling him to hurt himself or hurt us.

Price: And you know that at home.

Carpenter: We do know that at home. We've done sometimes weeks at a time of watching him deteriorate until he would qualify to get into the hospital. And it takes a team of people because you basically have to supervise them 24/7 to prevent them from dying.

McCullough: And on that note, the state closed two inpatient psychiatric centers in the past decade and kind of as a part of looking at inpatient centers as being an outdated model. I'm just curious, what do you think the impact of that was? And was that the right approach? Kali?

Van Baale: I personally feel that had there been a bed in April of 2017, an available psychiatric bed, an entire family would still be here. The Nicholson family, Chase needed a psychiatric bed. He went to the ER, he had a suicide attempt, he told the medical staff that he felt suicidal, he was having these thoughts, there just simply wasn't a bed and they sent him home with his family to take care of an illness that was so far out of their knowledge and ability to manage and five days later his entire family was gone. I think the lack of beds is literally costing lives in our state.

Price: You have maintained a relationship with him.

Van Baale: I do. I do. So, I wrote about the case the first year after it had occurred. Then a year later after Chase started serving his three life sentences in Iowa City at the prison there, I reached out to him and we became pen pals. And the reason I reached out to him was because I felt like I had been writing about from his family's experience and sort of the statewide experience, but I was missing sort of Chase's part in this story and his illness and what he went through and all of that. So, we started corresponding and ended up developing a very close relationship, to this day.

Price: Yeah, and when there have been law enforcement folks who have come on this show and we have talked to them also up at the Capitol where they talk about prisons and jails are sort of like mini mental health institutions, although frequently no services to provide for these. Is your experience with Chase -- is he getting any kind of help?

Van Baale: No. He gets medication and that's it. He is in the Iowa Medical and Classification Center in the special needs unit. They used to call it Oakdale, which was kind of considered the mental health unit. But really all he gets is medication. That's it. He is still very much in a prison and subjected to prison security and enforcement. It's very minimal.

Price: Are you involved at all in that aspect of it on the law enforcement side? And what can help once folks are locked up?

Carpenter: Well, we need to do a better job of taking care of people in the prisons. That is absolutely true. But they don't belong there in the first place for the most part. Chase's example is a really difficult one to talk about. But a lot of the people, we have approximately 1,318 people in our prisons who have a serious mental illness and we are 39 times more likely to have someone end up in prison than getting care in a hospital bed in the state of Iowa. We criminalize people for being sick because we fail to treat them. And part of that, the closure of the state hospital beds has led to that, and definitely it's the same thing across the country, part of that is that we have allowed this very false premise that everyone is better off treated in the community. But that pendulum has swung way too far. And so, I advocate to kind of say hey, as long as we have all of these people ending up in our prisons, homeless and dead, we are not meeting their needs int he community. And we need to address the people who are much more severely sick, both with more hospital beds at the state hospitals, fiercely we need that. They are not the same thing as Glenwood or Woodward. They are a different kind of facility. It's a hospital for psychiatric patients. And my son was able to get to the one in Independence. He was there for two years. It was the first time in 14 years that he received the level of care that he needed for an extended period of time and got regular interaction with a psychologist, exercise, nutrition, interaction with other people. It was transformative for him. We have been neglecting people as sick as my son for far too long, both as a country and as a state. And I do want to point out, there are a lot of really good people working as providers in our state and also at the legislature and the Governor. They have been working towards helping to improve things. But the thing that has been missing is the need for the long-term care and long-term housing.

Henderson: Kali, you keep nodding your head.

Van Baale: I do. The interesting thing I see happening now is all of the other organizations and entities in our cities that are picking up the slack, the perfect example is our public libraries. So, the Des Moines Public Library has how added a social worker, a full-time social worker, they have added new NAMI peer-to-peer support groups, family support groups who have loved ones with a serious mental illness. I mean, these are services now that libraries feel they have to fill. If you have been down to the Des Moines Public Library, the central location recently, it's hard not to notice some of the struggling, ill individuals who have nowhere else to go during the day, my own family member included, hanging out at the library.

Henderson: Well, both of you have provided important perspectives on this issue and we thank you for your time today.

Carpenter: Thank you for the opportunity.

Van Baale: Thank you.

Henderson: You may watch every episode of Iowa Press at iowapbs.org. For everyone here at Iowa PBS, thanks for watching today.

(music)

(music)

Funding for Iowa Press was provided by Friends, the Iowa PBS Foundation.

The Associated General Contractors of Iowa, the public's partner in building Iowa's highway, bridge and municipal utility infrastructure.

Elite Casino Resorts is a family-run business rooted in Iowa. We believe our employees are part of our family and we strive to improve their quality of life and the quality of lives within the communities we serve.

Across Iowa, hundreds of neighborhood banks strive to serve their communities, provide jobs and help local businesses. Iowa Banks are proud to back the life you build. Learn more at iowabankers.com.