Laysha Ostrow is the founder and CEO of Live & Learn, a research and consulting company that specializes in the inclusion of people with lived experience of the mental health system.

She researches community-driven interventions that present safe and effective pathways to independence and empowerment. Ostrow earned her PhD from the Johns Hopkins School of Public Health and holds a master’s degree in public policy from Brandeis. Ostrow is passionate about improving the experience of mental health service users, partially due to her personal experience with mental health systems. She has discussed some of her previous research on Mad in America.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Peter Simons: Can you tell me more about your company, Live & Learn?

Laysha Ostrow: I founded Live & Learn in 2015 after I finished my PhD. It’s a small company that works with different stakeholders around the country, such as providers, administrators, policymakers, but with a particular focus on always making sure to include people with lived experience in our work. We do a mix of research and consulting projects.

The consulting work ranges from small contracts with peer-run organizations that are reporting their outcomes, to working with state and county mental health systems. Then the research that we do is independent investigator-initiated research like one would do in an academic setting.

We just received our first multi-year federal research grant, which is funded by the National Institute on Disability, Independent Living and Rehabilitation Research, to study the career and financial outcomes of people who get certified as peer specialists.

 

Simons: Can you say more about that grant?

Ostrow: I’m excited to work on that grant because I think the project is really important. Employment has been key to my recovery. We’re seeing–all around the country and in every socioeconomic stratum–that people struggle with meaningful work, well-paying work.

A lot of our time is spent at work. For a lot of people, it’s not a very good time. At the same time, I’m doing a mental reflection on my own work environment, and what I want from my work and in my life. It’s encouraging to be able to get such a grant and to be able to do that work without being in an academic institution officially.

 

Simons: What do you hope to find out through this research project?

Ostrow: We know that a lot of people are getting certified as peer specialists in most of the states, but that not all of them end up working in peer support. In some cases, we don’t really know why. In some places, there aren’t enough jobs. Sometimes the jobs aren’t very good, and people don’t want them. In some places, people have to work in a fairly hostile environment.

 

Simons: What exactly does it mean to be a peer specialist?

Ostrow: A peer specialist is a new designation for a very old form of work: people providing mutual support to one another. Grassroots mutual support happens wherever you are. It’s just a thing that social animals do, including humans. Over the years, it has become more professionalized within the mental health system.

I think you could probably take a positive or negative view of it. Some people are not as comfortable with the peer specialist designation because it is a professional credential. People who work as peer specialists are required to have a certain amount of training, usually about 80 hours, in the mental health field. Then there’s a process for them to get credentialed by the state. It differs by state, but it could be something as simple as submitting your certificate of attendance from the training, or taking an exam, or taking an exam, and then having a provisional certification and then needing to work a certain number of hours to get the full certification. At that point, in most of the states, there’s some mechanism for a mental health provider organization to bill Medicaid or get reimbursed by Medicaid for peer specialist work.

This is certainly very different than people gathering in each other’s living rooms and providing support or engaging in political action. My perspective is that people should be paid and treated well for their work. At the same time, we need to ensure that the way that peer support is carried out is in keeping with the evidence that we have. However, sometimes it’s difficult for the scientific evidence to keep up with what’s happening in the real world.

There are two sides that we look at: what are the outcomes for mental health service users? Are peer specialists helping the people that they serve? But the other side is, what’s happening with the workers themselves? That’s the piece that I’ve always been interested in.

My dissertation was on peer-run organizations. We surveyed all of the peer-run organizations across the country at the organizational level. The perspective that I’ve taken in my work is the perspective of the workers.

 

Simons: Asking the question, “How is the work impacting the actual peer specialists who are doing the work?”

Ostrow: Exactly. We can’t forget that the people who are working as peer specialists are the same as the people who are receiving services. Even if people are at a different point in their lives sometimes, we’re all the same. But many of the people who are working as peer specialists are just as marginalized and disadvantaged as the people that they’re serving. Many of them are on Medicaid themselves. It’s just a different role in the system. There’s a lot of challenges to those jobs.

What question we are asking in the career outcome study is twofold. First, for people who are working in peer support, how’s that going? And second, for the people who aren’t, where are they working? Are they still working in mental health? Are they working at a management level, consumer affairs positions? Did they start a business? Did they decide to change careers?

Many people have had bad experiences in education and work, myself included. One accomplishment, like getting the peer specialist credential, can help you realize that you can do things. It can be empowering. Maybe some of those people go on and get a master’s in counseling, or a PhD.

We’re asking, for different jobs, what’s the level of job satisfaction? How do peer specialists experience the workplace? We’re hoping to measure burnout, self-esteem, self-efficacy. We’re hoping to understand better the relationship between the work that certified peer specialists do and these outcomes.

 

Simons: Is there a tension between the psychiatric system that peer specialists might be embedded in and the way that a peer specialist views the work as someone who has lived experience?

Ostrow: Peer specialists are often on this boundary between patients and providers, and a lot of the way that we’re all situated in the world is not necessarily up to us. It may even have little to do with our training and credentials. There’s a decent amount of research about the workplace experiences of peer specialists that find their colleagues often marginalize them. People who have different kinds of credentials, like psychiatrists, psychologists, and social workers, don’t perceive peer specialist workers as equal members of the team.

Beyond that, people feeling marginalized in their workplace is problematic and bad for their psychological health, regardless of the work that they do. Being a lesser member of a team is already bad for people. Layered on top of that is previous experience of surviving the psychiatric system. There’s research documenting that people are put in the position of still being a patient, or aligned with the patient’s perspective while being on the provider team. There are really complicated dynamics.

I’m interested in what the options are for us beyond peer support. I always say I have plenty of lived experience, but you wouldn’t want me working in peer support. I wouldn’t want to do it. It would be hard for me emotionally. I prefer to be alone with my books and my writing.

I think it’s great that there has been this explosion of job opportunities in peer support because it’s the first step. I’m sure some people still hold this belief that people who are labeled with ‘bipolar disorder’ or ‘schizophrenia’ can’t work, and that they can’t live meaningfully or participate in their own lives, let alone society. I think the peer specialist credential is a good first step. But, if we’re not careful, it can also narrow the choices that people have.

Society is acknowledging that everybody needs to do something productive and meaningful with their life. That’s part of the human condition. But we’re offered the choice of either being a peer specialist or not working and being on disability. Those aren’t very good choices.

 

Simons: Can you say a little bit more about how your own experiences influenced the work that you do?

Ostrow: I was first hospitalized when I was 14. I tried to run away from home. I didn’t make it very far, and being hospitalized was the solution. I was put on Paxil and then released from the hospital about two weeks later. I had a bad reaction to Paxil. I had a manic episode and ended up back in the hospital. After that, it was a series of being removed from school, being put on other drugs, getting off those drugs, being in a hospital, being removed from another school.

Eventually, I ended up in a residential treatment facility for two and a half years, and then I graduated from there. In Massachusetts, where I grew up, those kinds of special education institutions are co-funded by the local school system in the state. And they award you a diploma (somewhat arbitrarily, I think, because I don’t remember doing any coursework) from your home high school.

My parents took me to court and got guardianship of me when I was 18. I lost all of my legal rights as an adult. I had a court order for antipsychotics. I lived in the residential unit, and I was on four or five psychiatric drugs. I was on disability.

Everyone in my family went to college. My parents both have doctoral degrees. So, it was an expectation that I would go to college. But I also received this very clear message that I would not be able to go to a normal college, that I had to go to a special education school. Because of the guardianship, I wasn’t allowed to leave the state of Massachusetts. Massachusetts happens to have a lot of very good colleges, but it wouldn’t have been my top choice. When I was 14, before I was hospitalized, I wanted to go to UC Berkeley. But I applied to a couple of schools in Massachusetts. I went to Clark University.

When I was 21, I took a medical leave for depression. I went to a partial day program. Then, when I wanted to return to school, the school basically asked me not to. They said that school wasn’t for me, which seemed very clear to me at that point. Since I was 14, I’d been to six different schools. So, I believed them. I dropped out. I was on disability. I had jobs here and there, working in a daycare, working as a nanny, or working in retail. No job lasted more than a month.

My parents and my providers would reiterate the message that work wasn’t for me, and I internalized that. I believed that which is ironic now because now people often identify me with my work.

Like many other psychiatric survivors, I thought, this is happening to me, how do I stop this from happening to people in the future? What can I do? I thought about working in mental health. I went back to school and majored in psychology. Because I was in school, I was able to get research assistant jobs, and I loved it!

Then I did an adult independent study bachelor’s degree program at Lesley University in Cambridge. I took courses on mental health policy on the mental health system. I found my passion for looking at things from a systems level, rather than an individual level. The psychology of the individual never really spoke to me. It was not reflective of my experience.

I finished my bachelor’s degree and started working as a mental health policy researcher. I’ve had a lot of very painful experiences in education and employment, but people can always change. Those things have been important to me, and I think having those experiences brings a lot of empathy to my work. I feel a lot of empathy. I think that’s something we don’t really talk about with people who work at the level of the system, like I do, which is relatively disconnected from people who are receiving services.

There is still an emotional connection to the work. You’re re-experiencing trauma all the time, even though you’re just dealing with words and numbers and bureaucrats. I continue to do my work, so that what happened to me doesn’t happen to anybody else. I continue to have horrible experiences, actually, in employment and education, that reinvigorate that mission all the time.

 

Simons: Even now, you still have those experiences?

Ostrow: Yeah. The world of work is complicated. It’s where we spend the majority of our waking hours. We live in a society that emphasizes money and work. Basically, everybody has to work. So, if we have such an integral connection to this thing that we do with our time, I think it’s going to be painful sometimes.

This is where it’s a catch-22. If you have a personal connection to your work, you’re lucky because you get to do something every day that you care about, and that is rewarding. It makes you happy to be alive. At the same time, if you’re personally connected to your work, there’s an opportunity to be hurt.

 

Simons: How did you go from graduating with your degree and beginning to do mental health policy work to founding your own company?

Ostrow: After I finished my bachelor’s degree, I worked at the Human Services Research Institute (HSRI) in Cambridge. While I was there, I got a master’s in public policy from Brandeis University. While I was in my master’s program, I applied for the PhD program at Johns Hopkins. It’s the only school of public health that has a department of mental health.

I went for the master’s degree to get a PhD, but it ended up being one of my most valuable educational experiences. Everything I know about public speaking I learned from that master’s program, and it’s astounding how much you need public speaking skills in life.

Then I did manage to get admitted to the Johns Hopkins School of Public Health, which I still didn’t know was the number one school of public health in the country. People kept telling me I wasn’t going to get in. I feel like it’s public knowledge that Johns Hopkins is a brutal academic environment. It’s challenging.

I’ve been through some stuff in my life, and that was still a source of trauma for me. I mean, sleepless nights, nightmares. Did that happen in an exam, or was that a dream? In my first year, I felt like I was living in this no man’s land between nightmares and reality.

In my last year or second-to-last year, I started the Lived Experience Research Network. That was my first business. It was a nonprofit. It was a good example of how what you don’t know can hurt you. You’re never going to know everything about running a business or starting a business. I think most people who start businesses don’t know anything about business, or they probably wouldn’t do it. It’s similar to getting your PhD in that way.

We really didn’t know anything about it. We know about the work, and you think that the important thing is whether people are going to pay you for your work. But that’s not the important thing about starting a business. I mean, yes, there has to be like some market for your work, or you don’t have a business, but the devil is in the details: The personnel policies and the contracts and the budgeting and the division of labor. So that didn’t work out. It went very badly, and I had to resign my position the day before my dissertation defense, I wasn’t forced to resign, but it was an untenable situation. It was a major trauma for me.

After that, I quickly negotiated for funding to do a postdoc at UC San Francisco because I wanted to be on the west coast. I wanted to go to Berkeley, but I couldn’t quite negotiate with Berkeley. I did work it out with UCSF. By then, I knew a little bit about having a business: Quickbooks, filing the paperwork, the IRS.

I started Live & Learn out of a gut instinct. I missed having a business. I liked everything that went into it. I had ambivalence about where to work. When you get a PhD in the social sciences, you can work in government, or nonprofits, or academia. I didn’t want to do any of those things. I was burnt out at that point. I always tell people, even if you’re going to be in academia, do a postdoc after your PhD because you’re going to need the rest. You’re going to need a big nap.

I had started coming off of my psych drugs between the second and third year of my PhD. I got off Risperdal, Lamictal, and Wellbutrin fairly easily. I mean, I white-knuckled through it. I was emotionally unstable, but I was used to burying my emotions. That’s part of being in a PhD program. But I still had the Klonopin. Klonopin, as everybody knows, is a nightmare to get off. It took two years. So, while I was in my postdoc, I was burnt out and depressed. Yet, during that time, I started a company. Then I finished getting off of Klonopin. Getting off of it, titrating down is hard, but it’s the time after that when you’re off of it, that is pretty bad. So, I didn’t sleep for a while.

My postdoc funding ran out after a year, and I couldn’t negotiate anymore. I had opportunities to do work for other people, but I just can’t do other people’s work. It felt like the experience that I had when I was 21, and I dropped out of college. I had to work at the Express, and they told me that I was folding the jeans wrong. So, that’s how I felt about my postdoc options. After that, I couchsurfed in LA with family and friends and tried to work things out.

At the same time, I felt this horrible, overwhelming shame. I had already failed in my life, from when I was 14 until I was 26 and got off the guardianship. Then I miraculously got it together, got a PhD from Johns Hopkins, and proved everybody wrong. Then I tripped and fell into an even deeper hole of failure. I asked myself, how many times can you crawl out of that hole? I thought, maybe they’re right about me. But what are you going to do? You just keep going.

I kept trying. I got into the academic job market, and technically, I had good options. You know, if you lower your expectations, you could have a perfectly good life. But that’s not necessarily for me. So, I got going, hustling for Live & Learn, and also on the academic job market, and I got some offers and had some good opportunities, but I refused to leave California.

Then, I think it was on New Year’s Day, 2016, I called my dad, and I said, “I think I’m done with academia. I want to work for myself.” And he said, “That’s fine. But if you want to do that, you have to really do it.” So I did. It was touch-and-go for the first four or five years of Live & Learn, and I was hard on myself. Thinking, maybe I should be in academia, perhaps I should do what people tell me to do. There were times where I was imminently going to be out of money, unable to pay my rent. I thought, I better get another job. The sad thing is that people call you “doctor,” but you have no skills to get a job. My business was about to run out of money–I had a month left or something—and then contracts started coming in.

 

Simons: What are some of the first contracts you worked on?

Ostrow: In 2015, CAMHPRO (the California Association of Mental Health Peer-Run Organizations) gave me a $40,000 contract for the year to help them evaluate the impact of advocacy on mental health policy. So Sally Zinman (CAMHPRO executive director) is always in my heart.

Mark Salzer at Temple University has also always been there for me, and I’ve had contracts with his research center for several years. He’s a partner on the peer specialist grant that we have now.

I have a consulting contract with another small business in California that contracts with the State Department of Health Care Services to do quality reviews of the county Medicaid mental health plans. That’s outside of my normal stuff, since I usually work with peer-run organizations, and on alternative mental health stuff. This contract is very much mainstream mental health at the county level, Medicaid-funded mental health services.

That’s so great because I get to see the system in its entirety in a way that I don’t normally get to see in my work. You know why it’s so hard to accomplish anything, for those of us who work in alternative mental health. You’re really up against massive bureaucracy. It just makes it very clear that there’s a system at work. Systems, yes, are comprised of individuals. But we’re all kind of victims of our systems.

 

Simons: Would you say there’s something you want to improve about the way those systems work? Does Live & Learn do any policy advocating work?

Ostrow: I try to stay away from “advocacy,” specifically. I feel like other people label me as an advocate sometimes. I sometimes think when you’re looking at different evidence or looking at the evidence in a way that challenges systems, you can be labeled as an advocate, even though what you’re saying is just as factually correct as what anyone else was saying.

Take, for instance, the Second Story Peer Respite in Santa Cruz as an example. They’ve had a lot of issues over the years with the community fighting them. But Second Story is the site of the best research that we have on peer respites, which was conducted by Bevin Croft at HSRI (for example, see this article).

I was in Santa Cruz a couple of weeks ago, and the local news did a story on the Second Story house, and one of the neighbors at the end had the audacity to say, “The county is funding this, and they have no evidence that it works.” That’s not true at all. But if you advocate for that perspective, it’s like you’re an “advocate.” The assumption is that that neighbor is somehow correct, even though they’re incorrect.

 

Simons: Just having documented evidence that contradicts the way the community views it makes you an “advocate.”

Ostrow: Yeah. To me, the big priority of my work is representing alternative perspectives, marginalized perspectives from people on the ground about how we’re helping ourselves or helping each other. Most of my work is observational, cross-sectional, large-scale surveys. It’s the first step in elevating our perspective, using quantitative data, bringing something into the conversation so that we can do more research.

 

Simons: What do you think the next stage looks like? What would it look like to elevate the research?

Ostrow: I think the study we’re doing now on career outcomes is a good start. It’s longitudinal, and you can answer more questions with longitudinal data than you can with cross-sectional data. I’m excited about that. It’s my first longitudinal study.

Then you get into the world of experimental studies. Experimental studies are hard. I’ve been working with a colleague at USC for years to get a study funded on the effectiveness of peer respites compared to other kinds of crisis diversion. We’ve submitted that application four or five times, and the review board always comes back with something about the methods because we’re not doing a randomized controlled trial.

Some peer respites are peer-run programs in a home-like environment, where people can go if they’re starting to feel like they might be in a crisis. Part of the theory of how they work is that they’re available to the people in the community. You refer yourself there, unlike an emergency room or an inpatient unit where you sort of have to be funneled into the system and have someone assess you. You choose to go to a peer respite. There’s no way to randomize people to choose something.

 

Simons: And there’s pushback against doing the study the way you want?

Ostrow: Well, I understand the critique from a methodological perspective, because then the issue is how to determine whether the change that you’re seeing is attributable to using peer respite and not due to other factors. I don’t want to do garbage science either. But there are different observational methods that you can use to control for some of those other variables. They’re never going to be as good as randomization. But you have to use alternative statistical methods if you want to research alternative services. Maybe that’s why those methods exist, to study things that are difficult to study.

 

Simons: It’s my understanding that it’s pretty common to see research studies that compare what’s already happening at different sites and how different sites are doing treatment differently, and that’s not randomized. I’m just surprised that there is such a pushback against this.

Ostrow: I think some of it is just that it’s very competitive to get research funded nowadays. Forty years ago, there was a lot more money for services research. Now there’s not as much money for services research or research in general. You know, you can look to the people that we’ve elected for that, and you can look to the people that elected them.

The other issue is that academic research is all about standing on the shoulders of giants—incremental steps towards progress. If you take too far a leap, reviewers will have trouble seeing the value in it. They can make a safer bet on something that’s a more incremental change, and that’s the way it works.

For instance, while I’m thrilled to be doing the career outcome study, my original idea was to do a study on people who get certified as a peer specialist and become self-employed. I wanted to look into people who work in private practice, sort of off-the-grid, getting paid to provide peer counseling to people in different ways or to families in the community. They’re self-employed.

I wanted to look at business models for that and how those people experience their work. Why did they leave peer support? Was it because the environment wasn’t very good and they wanted to work on their own? Or was it that they weren’t able to do authentic mutual peer support in an agency, but they can on their own? And how does that work when people are paying them directly? All of those questions.

But the counsel from my mentors, who I’m glad I listened to, was that you have to take a smaller step first. First, looking at peer specialists in general and where they’re working other than peer support. And then, assuming that some subset of those people is self-employed, then I’ll have data on that. After that, I can write a grant application to do that study. So, it’s maybe four studies down the line. You have to be patient.

 

Simons: Is there a change that you would like to see in the way that our mental health systems work?

Ostrow: Yes. Lots. At the same time, when you start thinking about it, you have to lean into your nihilism or something. It’s overwhelming. Part of it is a problem with identification–the people that get funneled into the mental health system and stuck there. Not that anybody deserves to be stuck there, but we don’t have really good ways of identifying what approach will work for someone.

There are a lot of people wanting to research individualized approaches, like personalized medicine based on your genetics and other objective characteristics. Still, we don’t even really do a good job of listening to people. And at the same time, the system isn’t designed to listen to people.

There are a lot of different consequences for the way that we treat people, and you never really know what’s the right thing to do. It’s like parenting; you don’t know what you’re going to screw up. Anyway, listening to people is a good idea, trying different things and not being so attached to the way that we do things.

Another problem is that a lot of people working in the mental health system are burnt out. I have this contract with the state, and we always interview with the frontline staff. The frontline staff is often the most rambunctious group, just dying for someone to listen to them, which is ironic.

I’m always looking from the service user perspective, asking, “How are you able to advocate for yourself?” And then you look at one tangentially related group, another stakeholder group, and they feel the same way. Obviously, I think it’s worse for people whose lives are entrenched in the system, not just their jobs. But like I said, work is an important part of your day.

 

Simons: Whether you’re on the side of being a worker in the system or a service user in the system, there’s a way that the system burns you out.

Ostrow: Yeah, it’s the same for people in the administrative role. We have too many people; things are too complicated. I think that peer support has been, in some ways, a victim of its own success. It’s a great thing to have introduced it into systems, but some things go wrong or could be better about the ways that peer support has been integrated into mental health systems. At the same time, I think it’s such a benefit to people who are using services that need someone to connect with. It’s just about figuring it out at this point.

 

Simons: Any final thoughts before we conclude?

Ostrow: I think things have gotten a lot better. Someone said to me years ago that if it wasn’t for all the advocacy that people have done before me, I would have ended up in a long-term institution. Now those places basically don’t exist.

There are so few people that are subject to that kind of treatment on a long-term basis. I think that’s a huge improvement. At the same time, the net has gotten shallower but broader. A lot of people get wrapped up in the system that don’t need to be there.

I also want to say that the work that Mad in America does helps change the larger mental health system. It’s helping to broaden awareness and helping people realize that they’re not alone in their experiences.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

10 COMMENTS

  1. Glad to see you are out and about, although I have my own opinion on this quote …..
    Ostrow: I think things have gotten a lot better. Someone said to me years ago that if it wasn’t for all the advocacy that people have done before me, I would have ended up in a long-term institution. Now those places basically don’t exist.

    I don’t think things have gotten better.
    And I think psychiatry tries to make it so that peer folks will leave.
    Psychiatry would like to do their science.

    • Now they have the HUD ghetto and homeless centers and the streets.

      I believe there is a link between psychiatry and homelessness. Long term use of mind altering, addictive drugs can really destroy your ability to hold down a job.

      And I have known a number of ideal “consumers” who wandered the streets due to shortage of HUD housing. Driving people crazy with SSRI’s and benzos who were only mildly depressed before getting “helped” and making short term problems life long drove up the numbers.

      I also met people who wanted homes and perhaps needed them because their brains and CNS were too messed up for independent living. 🙁

      Lobotomies are about keeping people childish and docile. Not independent! This includes the chemical kind.

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