PATRICK HOLKINS: I want to thank those who have joined this call. The title for this session is "Community Based Behavioral Health Services for Native American Children: Challenges and Opportunities." My name is Patrick Holkins. I'm a trial attorney in the special litigation section of the Civil Rights Division of US Department of Justice based in Washington, D.C. I'm joined by my colleagues Catherine Yoon and Deena Fox. We're excited to facilitate this important discussion today.
I want to just quickly run through a roadmap of who the session before we dive into questions for our panelists. First we'll start with introductions. Both the DOJ team and to our wonderful panelists. We'll then march through three topics for discussion. The first is challenges faced by Native American children in accessing Behavioral Health Services that can prevent unnecessary institutionalization. We've allotted about 20 minutes for that topic. The second topic is strategies for providing services that reduce unnecessary institutionalization to these children. Allotted 30 minutes for that topic. And then the third, opportunities to use similar strategies when engaging in an Olmstead investigation or litigation affecting Native American children. We have allotted 15 minutes for that section.
We'll then close with Q&A. Hopefully at least 15 minutes. We're very interested to hear from you. Feel free to drop questions in the chat as we go. Catherine, Amy and myself will keep track of those or keep questions until the end. With that I would take start with introductions. I'm going to introduce one of our panelist, Dr. John VanDenBerg, a founding partner and former president of Vroon VDB. Psychologist, he has lectured in every US state in almost all areas of Canada, Europe, and Asia. He has been a major innovator, researcher, cofounder and pioneer in the gradual perfecting of the wrap around process. Which now reaches hundreds of thousands of families worldwide. In the 1980s he developed the first nonadministration of cross agency wrap around process, the Alaskan youth initiative which focused on building community around youth instead of but putting them in institutions. This was one of the first national efforts focused on service integration for children and families with complex needs. Improved the role of relationship and support and supporting youth with complex behavioral health needs. Dr. VanDenBerg has worked extensively with state and able to governments.
I'll turn it over to Catherine Yoon for the next introduction.
CATHERINE YOON: Thank you. I'm Catherine Yoon. I'm a trial attorney within the Civil Rights Division of the Department of Justice. It's my pleasure to produce one of our distinguished panelists, Dr. Amy Elizabeth West. Dr. West is a clinical child psychologist who has worked extensively with Native American communities. She joins us from the University of Southern California tech School of Medicine where she holds appointments as professor of clinical pediatrics, psychology and psychiatry, and the behavioral sciences. Associate training director for psychology in the division of general pediatrics and director of the child clinical and pediatrics psychology internship at Children's Hospital Los Angeles. Dr. West is of Southern Cheyenne heritage and partnered with American Indian and Alaskan native communities nationally to conduct research focused on the assessment of mental health and substance use needs and the development of culturally based mental health services in those communities. We are grateful for her participation on this panel.
Next, Deputy Chief Deena Fox will introduce Olmstead work.
DEENA FOX: Hello, everyone. My name is Deena Fox, Deputy Chief in the special litigation section where Catherine and Patrick both work. Excited to be here today. And to tell you a little bit about the work that our section does to enforce the ADA's integration mandate which requires that states and local governments provide services to people with disabilities in the most integrated settings appropriate. We do that work in a variety of contexts. So we enforce the rights of people with physical disabilities, mental illness, and intellectual and developmental disabilities. Not to be unnecessarily placed in nursing facilities, we ensure that people with mental illness are not unnecessarily cycling through psychiatric hospitals. We are ensuring that people with intellectual and developmental disabilities are not living unnecessarily in ICFs, intermediate care facilities, and we're doing work to ensure that children with emotional and behavioral disabilities are not placed unnecessarily in residential treatment facilities, RTFs, and hospitals.
Based on our experience across the country, enforcing the ADA's mandate we have learned that the primary problem that often results in unnecessary institutionalization is the unavailability of community based alternatives to institutional services. And along with that, often a failure to screen and assess people and connect them to the intensive services that they need in the community.
So to give one example of how that has played out in the context of children with behavioral health needs as an introduction to our topic for the rest of our time today, we currently are enforcing a matter in West Virginia related to kids with mental health needs. In that state DOJ found that West Virginia had over 1,000 children with mental health conditions in residential facilities. The state's rate of institutionalizing children was significantly higher per capita than other states, and facilities had become the default placement for children with mental health needs.
West Virginia also lacked the in home and community based services that children needed, resulting in children waiting for months to access care. And certain groups of children were at heightened risk of placement because of the lack of community based services. We identified that status offenders, lesbian, gay, bisexual, transgender and questioning children, trauma exposed children, dually diagnosed children and children from racial minority groups, children who had previously been placed and also older children were all at heightened risk of unnecessary institutionalization.
As a result, after we made those findings we were able to reach an agreement with the state of West Virginia that requires the state to remedy this ADA violation by screening children in the target population to determine if they were appropriate for community based mental health services, developing a comprehensive array of community based services for children including wrap around facilitation, thanks to folks like John VanDenBerg, who is here with us today, behavior support service, family support and training, in home therapy, children's mobile crisis services, therapeutic faster care and for the transition age children, assertive community treatment as well.
We also have in our agreement a requirement to assess all children who are currently in residential placements to determine whether, in fact, they would be served in more integrated settings and a quality improvement process to ensure the system continues to develop and respond to the needs of children and families in the community. You can find that agreement. I will put a link in the chat if anyone is interested in looking at that specifically, but today we're going to shift our focus to talk more about how the problems that we saw, for example, in West Virginia, how do we address similar problems in the context of particular communities, and today a particular community we're looking at are children of Alaskan native and American Indian families. So I'll turn it over to Patrick to introduce the next part of our program.
PATRICK HOLKINS: Thanks very much, Deena. As I mentioned, this first topic is challenges faced by Native American children in accessing Behavioral Health Services that can prevent unnecessary institutionalization. My first set of questions is for Dr. West. Dr. West, one topic important is enter generational trauma. Can you explain how Intergenerational trauma and how you can understand the structural problem and psychological barrier affecting access to behavioral healthcare?
AMY WEST: Absolutely. Thank you, Patrick. So intergenerational is not a concept just for Native Americans. It's conceptualized as a trauma just so deep and pervasive that it travels across generations. It's kind of passed down even, you know, to generations that may not have directly experienced the trauma but because of its severity and kind of the cycle way it occurs as a result of the trauma, it is carry forth through generations.
Specific to native populations it's conceptualized as the cumulative intergenerational, emotional and psychological injury that occurred as a result of the genocide that happened after colonization. So I think and the reason it's important, I think, for us to talk about it in this space is because I really don't think that and I think this is a shared understanding in the field, that we can truly understand the extent of the health disparities, both physical and behavioral health disparities in native populations without being acutely and intimately familiar with that historical and intergenerational trauma because of the role that it has played over time in producing and perpetuating those behavioral health disparities.
So I just, you know, want to give a brief, very cursory kind of 500 year bird's eye view of what I'm talking about when I talk about historical trauma with respect to native populations. So you can really think about it, you know, in terms of two main phases, in terms of the US federal government's policy towards native communities, there is kind of the policy of genocide and then the policy of assimilation. So when the colonizers first arrived, the first approach that was taken towards native communities was one of genocide, right? So I think the first, you know, decision making on the part of, you know, then the kind of federal government or the colonizers, I guess it was then, was to try to kill and just annihilate all the native people that were here. They attempted to do that through genocide, through killing, through biological weapons such as illness. And you know, we're almost successful. Just in that first 100 years, the population went from about 5 million native people to less than 2 million. And 5 million may not seem like a lot now in terms of, you know, comparable to our current population, but at the time, that was a huge population. I mean, there were thriving cities in what is now the United States that were on par, again, proportionally at the time like New York City. Really very advanced communities. Over 700 different tribal, cultural groups. 500 different languages spoken. It was a very kind of rich, diverse, linguistic and cultural population. And so that the first attempt was to totally wipe that out.
You know, once so you've probably heard the saying and I think this was kind of the political mantra for that first policy of genocide was the only good Indian is a dead Indian, and that was kind of the primary goal of the colonizers at the time. As we move into the late 19th century, when it became clear that total genocidal annihilation was not going to be possible, that native people were really fighting back, were resilient, committed to continuing both in numbers and their culture, then I think the policy shifted to one of assimilation. And so that is the era that you may or may not be familiar with where it was all about relocation. Kind of dislocating native people from their lands, isolating them from the rest of the colonies and really trying to either put them away and forget about them or treat them in ways that forced them to kind of assimilate in order to survive. You know, for example, all of the native people east of the Mississippi were moved west of the Mississippi. Moving them from their native lands meant they couldn't hunt, they couldn't produce and grow the kinds of foods that were a part of their diet. So they became dependent and this was part of, I think, the strategy. They became entirely dependent on the US government for their sustenance. And then entered the era of the commodities where tribal populations were given a certain amount of flour, sugar, and lard every month. Hundreds of years later there's huge problems with obesity and diabetes in native populations. You can see that's just one example of the kind of results of these policies, these very specific policies over time in producing some of the health and behavioral health disparities that we see.
So during this kind of period of assimilation it was all about kill the Indian, save the man, that became the political mantra. It was now not necessarily killing off the population but assimilate tote totally assimilating the population away from native culture. Celebrating any kind of native traditions, culture, history, speaking any native language became illegal. Families, kids were taken from families and put in boarding schools as a way to try to assimilate them into non native culture and were their hair was cut, they were beaten if they spoke their language, and often didn't see their families ever again.
And so that the boarding school era is very recent. My grandfather was in boarding school, so this is we're talking the '20s, '30s, '40s here. This is very recent history. And so that again, is a very cursory, very bird's eye view. The total native population was reduced from 5 million to 500,000 in 1900 and now it's back up to about 2 million. So it is growing and increasing and I think there are, you know, many revitalization efforts. But what's important in all of this and understanding the historical trauma is to understand that history and when we see when we look at native populations today and see health disparities with regard to depression, anxiety, suicide, developmental disabilities, substance use, you know, you really have to understand it in the context of the incredible loss and tragic loss and loss with regard to spirituality, tradition, culture, family, land that has been inflicted upon that populations in the last 500 years. That is what I would say as just an introduction to the concept of intergenerational trauma and how it might be impacting today what we see in terms of behavioral health disparities and how we understand native communities interfacing and kind of relationship with the health systems. You know, that come from the federal government or mainstream that have been designed to help them.
PATRICK HOLKINS: Thank you very much, Dr. West, for that really helpful overview. I'd like to turn now to Dr. VanDenBerg and what this looks like to families seeking behavioral healthcare in communities to avoid placement or returning from an institutional setting. Are there specific examples of access barriers affecting specifically native American children and families if you can share based on your sense of work with those communities.
JOHN VANDENBERG: Sure. Thanks, Patrick. First, I want to thank all of you. As the old guy on the call. The issue of the institutionalization is extremely important. And it's a moving target. When Deena was talking about West Virginia, my blood just started to boil because at one time West Virginia had virtually no kids in out of state institutions. We have to kind of keep at this. I've been a private consultant and trainer and owner of a training company for 30 plus years, okay. And I have worked on the majority of the major deinstitutionalization lawsuits around the country, law center, family organizations in California. I've been privileged to be in that regard. I've also visited personally all of the major psychiatric institutions in the country and taking kids out of them, you know. This is hands on, okay? Not theoretical for me. And for seeing the tribal communities and seeing what happens to these kids when a child, say, leaves where they live in Wyoming and all of a sudden they're in a facility in Texas or Boston or wherever, to see what happens to them means it changes you forever in how you think about institutionalization. These kids often are not visited. I've seen young people from tribal communities who are in a facility for 2 1/2 to 3 years without being visited. I remember going to pull a kid out of an institution in southern California and I took it personal personally took him back to his village in Alaska. And we were arriving on a ferryboat. And from the deck of the ferryboat he and I were looking out and he spotted his family down there on the dock. And he just screaming. Hadn't seen them in two years. When we walked down off the gang plank they didn't come up to him because they didn't recognize him. You know? And you know, it just what that said, looking at him and I just said to him, I realize what was happening. I said, you know, they haven't seen you in a long time. Run up to them right now and they'll figure it out. And he did and it worked out. But it's devastating. And you know, I've been privileged to work with over 200 indigenous communities in all my years. And I just have to say that how many times in auditing the kids that are gone from the tribal communities out to institutions and states would often hire me or my staff to come in and do audits, where we would look at these young people and say, is this absolutely necessary for them to be living in this environment, is this absolutely necessary clinically in every way. I have to say I've only seen a handful in my entire career of kids that I felt really had to be in that setting, just a handful. So often what happens is things back in the tribal community begin bubbling up. People are confused. The school is confused. The parents are confused. The neighbors, the friends, the family are confused. Somebody says to them, this is really bad, he needs to go get treatment. All right? And at that moment something happens where that child is away from that community. And again, just imagine for yourselves being 11, 12 years old and all of a sudden you live in a whole new community and nobody you know is around you. That's what these young people... and talking about Amy's conversation about intergenerational trauma, the people of my age, I'm 71, you know, who were in those schools, they understand this. They went through it. And they're horrified by it.
So the alternatives, we know we can build alternatives into all the communities, whether it's tribal communities or whatever, that keep these kids at home. All right? And I have a problem, Patrick, I can just talk about this because I'm so passionate about this issue. We know we can build these services. Go ahead, Patrick. I'm sorry.
PATRICK HOLKINS: No worries at all. We appreciate your passion on the topic. We will have an opportunity to talk about strategies for building alternatives to institutional placement. We have a couple of minutes left in this section. I'd like to turn back to Dr. West to pose another question, which is how did the challenges faced by Native American children and families in accessing behavioral healthcare in the communities differ from challenges in rural communities. Why is this distinction important to you?
AMY WEST: Sure. I think one relatively little known fact is that the majority of our native population today is actually in urban centers. I think there's still this myth that they're all out on these reservations or in really rural areas, like totally isolated and separated from society. It's not the case. About 75% to 80% of our entire native population in the United States are in urban areas. And the largest urban areas have the largest populations. So New York, L.A., Chicago are the three largest. And then of course there's some cities like Tucson, Phoenix who have proportionately larger populations because of where they sit with respect to large tribal communities like the Navajo and Apache. So I think there are many kind of things that that leads to that are problematic in terms of accessing behavioral healthcare. One is because nobody even knows they're there, they tend to be a very invisible population in urban communities, even ones that are really large. So I spent the first decade of my career in Chicago and Chicago has the third largest native population in the country. It was one of the federal relocation sites, so there was there were federal policies in the '40s and '50s that sought to relocate indigenous people from reservations to urban settings. Again, it was part of the assimilation efforts. So they promised them all sorts of job training and money and housing and took them from their reservations and plopped them down in urban centers and of course none of the supports were actually there. As a result, hundreds of thousands of native people came into urban settings. I think that was when this transition really began to occur, towards having the majority of our populations there.
So you know, I'm grew up in Washington, D.C. I'm not from Chicago. But I very quickly kind of partnered with the native serving agency in Chicago around developing mental health services and started engaging in this work with them and we got a big grant and one of the things that had to do is go to the head decision makers, policymakers in the city and state, Department of head of the Department of Health and Human Services and head of the Department of Mental Health because we were just trying to get a sense of the landscape and the needs and the service system structure for native people in Chicago. And consistently the response I got from any of them was, what do you mean, there's no native people here. This is Chicago. These were people who were from Chicago who had spent 50 years there. So that is the problem. I mean, that's this is an invisible population. Nobody knows that they're there. When we went out and tried to survey all of the mental health service organizations in the Chicago land area, none of them were even collecting data as to whether they were serving the native population. It wasn't even a check box on their demographic questionnaire so we couldn't even get a sense.
So that's a problem, just the lack of visibility. And you can imagine what that also leads to, is an incredible lack of any community based culturally-informed services. Again, nobody knows they're there or nobody knows they're serving them. There's certainly not going to be any sort of efforts around meeting their distinct cultural and community needs. So I think that's one different from difference from reservation populations. Reservation populations are also incredibly under resourced and underfunded in terms of behavioral health but at least they know the population they're serving. And the Indian health service, you know, does fund a large infrastructure of health and behavioral health services to reservation populations that they do not fund to urban populations. So very tiny part of the budget of IHS goes to nonprofits who contract with IHS and urban populations. So you know, it's an underfunded system. I think that there are not there are very few culturally and community based services, and just a real lack of understanding of who this population is and what their needs are in urban settings relative to kind of reservation and more rural settings.
PATRICK HOLKINS: Thank you so much, Dr. West. Tremendously helpful. I'd like to turn it over to Catherine Yoon to introduce our next topic.
CATHERINE YOON: Thank you. So you both discussed the challenges Native American children may face in accessing Behavioral Health Services to prevent unnecessary institutionalization. We would now like to hear your thoughts on strategies for providing services to these children in light of the challenges. One area we would like to focus on is providing trauma informed services. Dr. West, this question is for you. What might trauma informed services look like in the context of providing behavioral health services to Native American children? Dr. West, you may be on mute.
AMY WEST: I'm sorry. So I think the first thing I would say is that with respect to thinking about providers, particularly non native providers, because that is the case a lot of times, providing trauma informed services to native populations, the first thing that I would encourage that population of providers to do is just educate themselves about the historical context of native people in this country and the legacy of trauma and loss and violation of treaties and that sort of thing because, again, as I stated earlier, it really is important you don't have to become an expert on it but I think you really need to understand the context that native populations have and kids and families have kind of developed throughout, over the course of the last like several hundred years in order to really understand and provide kind of culturally informed trauma informed care, you know, to that population. So that's the first thing.
I think, you know, with that comes a certain and this is true of trauma informed care with any diverse population but there has to be a stance of curiosity and cultural humility. So in the kind of native research space we often call it decolonizing healthcare or decolonizing research, but a lot of these of our models, of our processes have evolved in a Colonial space and really reflect the colonizing mentality and so I think there are power differentials and hierarchies and assumptions that are really engrained and even in our behavioral healthcare system that I think really have to be brought to light and kind of understood and addressed more directly. And so I think one way to do that is just to take a stance of humility and curiosity and questioning about native culture. Again, it's not that you have to be an expert in it, but recognize that the person sitting across from you or the community that you're trying to serve is their own expert in it and kind of be open to what they are going to voice to you and guide you to do in terms of meeting their needs in behavioral healthcare. The other thing I would say in terms of trauma informed services is, again, just understanding how the what you're seeing whatever the presenting problem is, whether it be a developmental disorder, substance use, depression, suicide attempt, that the complexity of factors, of social, of cultural, of historical factors that are determinants of whatever the behavior is that is sitting in front of you. I think that complexity and that kind of holistic way of understanding what the problem is needs to be honored and understood in order to, again, kind of take a trauma informed stance to care.
And the last thing I would say that, you know, I think is should be kind of obvious with everything I've already stated, is just that the care needs to be very patient centered, again. I think you know, we tend to have this model and kind of western medicine that the doctor is always the expert and always has the answers and or whoever is coming in from the outside that's the expert. And again, that's a very kind of Colonial mentality and power hierarchical mentality. And is understandably not one that sits very well with not a lot of native community members. And so there should be this notion that it's not the dominant culture that's in the driver's seat here, that true trauma informed care with a native individual or, you know, with a native community needs to be driven by that individual, driven by that community, be truly patient, family, or community centered and reflect the actual stated needs and stated perception of the problem and stated, you know, resolution as given by that individual or that community. And that's what's going to kind of enable the sort of relationship of trust and collaboration that's really necessary to provide truly trauma informed services.
CATHERINE YOON: Thank you very much. This next question is for Dr. VanDenBerg. Today we're interested in learning about communicating across cultures and providing children and their families culturally appropriate services. What culturally appropriate services may be effective in helping Native American children with behavioral health conditions remain in their homes a communities, and related to that, what structural problems including system design or financing affect access to these kinds of services? Finally, what are some strategies you've seen used to support and sustain these kinds of services whether through Medicaid or other funding sources?
JOHN VANDENBERG: Sure. Just to define a few terms. First of all, for the participants in the call, standard mental health services for children and families, typically in most communities that have good services, they include in home care, okay. Clearly support for children and child welfare, foster care and others, therapy, one on one therapy or group therapy. We have group homes. We have residential treatment centers. And then at the high end, institutions. Those are typical range of services.
So whether it's in urban population as Dr. West said or it's a tribal community, the question is how often are those services, that standard continuum of services, how often are they effective with people who have a very different culture than the standard community/person that's coming in to care. Well, I got to say, it's kind of grim because often those services really don't fit. We fit the child and family into the service rather than fitting the service to the child and family. All right. I use the term "wrap around." What wrap around means is that we, when we have a family that needs additional support, we ask a critical question and that question is what does this child and this family and the community around them, what do we need to do for this family to have a better life? All right. And again, for many of our Native American children, what we've seen is no one asks that question. What people said was, what treatment can we do to this child that will make them better. But no one asked, what does this family really need.
Well, saying that in the context of community, for tribal communities, when we say let's get a team together, let's get people around I don't even like the word "team," it's kind of athletic sounding term. Let's get people, the family and the people around them that they define as their people, let's come together and ask that question. Let's see, as a group, whether we can do that. Then and Dr. West talked about this and Deena talked about this, this sort of like, okay, are we integrated in our approach across the various sectors in that community, education, child welfare, juvenile justice, mental health, all those people, are we agreeing that we're taking this family centered, more integrated approach that's highly individualized? It's not treatment, in quotes, it's what does this family need to have a better life. That's wrap around. The good news is is that one of the reasons I was so privileged to be invited to so many tribal communities over my three decades on the road was this really seems to fit culturally the way many Native Americans see their world. And again, I've worked around the world with indigenous people so it's not just Native Americans but the reality is that there's an instant connection to this concept. Why? Because this is the way this community has lived for hundreds of years. All right? And this really fits.
Now, again, a child may need brief at home care. One of my favorite communities in the southern part of the US that sometimes children would go out of that community, they would go for a week of stabilization. I consider a month of treatment in an institution, I consider that totally inappropriate long term care. But a week of restabilization, right back in the community, never taken away, never in another place. So when I talk about services, what I'm after is individualized, strength based, family driven, integrated across everybody in that community that's in the life of this child coming together, we know that works. Okay. We know that. We know that community after community across the country, we know it works if the providers understand the cultural sensitivity.
Horror stories, folks, of well meaning, you know, trained clinicians coming in to tribal communities or working with urban folks, just not having any sense of what the culture differences really are. I echo what Dr. West just said, which is if you're a clinician, get yourself a mentor. That's what I always said, get talk to the leadership, get yourself a mentor assigned to you and learn. Okay? And so many of the individuals in their graduate schools and medical schools didn't have any training about cultural differences and what they were. Not an hour of it.
I'm a child psychologist. I spent 13 years getting my doctorate. My model in graduate school was I finish no requirement before it's time. In how many years how many classes did I have on how to understand cultural differences? Not one. All right? So I don't put people down who don't have that experience, but it's critically important. You've got to come in and understand the people around the child and family really are in charge. You're not. And that's a big difference for us in the mental health field. I think maybe I've exhausted my minutes here.
CATHERINE YOON: No, you're fine, Dr. VanDenBerg. Would you also be able to speak to the funding piece, the strategies for addressing that?
JOHN VANDENBERG: Sure. When we take funding from BIA funding or whatever it is, federal funding, state funding, often the people that create that funding, they're thinking treatment. Again, group homes, therapy, that's what they're thinking. That's what they're funding. They really have to understand that we're talking about something very different here. Now they can get it and they can understand that this is what the funding is going to do. We're going to set up local people who become experts in providing a wrap around individualized approach and we're going to fund those local experts, those local people. I was working in one tribal community where, when asked who should facilitate this wrap around in your community, everyone instantly said, grandmothers. And they actually then hired a bunch of grandmas who became the facilitators of the wrap around. Well, if the funders don't understand why that's so important, you've got a gap that you've got to address.
So what we do, I think it's critically important to DOJ and what you're trying to do is to look at who is training those funders and what this has to look like and why it's going to look like this. Wrap around is now evidence based practice. It's in every state. It's in almost all countries of the world. But the reality is, is that often the funders don't understand it at all. They just think it's something kind of weird. So you've got to start with training those folks. Go ahead.
CATHERINE YOON: Oh, no, I wasn't trying to interrupt you. I was just getting ready to ask another question.
JOHN VANDENBERG: Ask.
CATHERINE YOON: Okay. Are there any others strategies related to the system and systemic challenges of providing services to Native American children that you would like to touch on?
JOHN VANDENBERG: Oh, you know, I think the issue of integration that Deena talked about and Dr. West talked about is something that really has to be understood as part of this picture. And let's go back to the professionals coming into a community or the average professional you mentioned Chicago, so let's use Chicago or Denver, wherever. How many of them really understand those other systems? Okay. So if you have a degree in criminal justice, how many courses do you have on special ed, okay? The answer to that across virtually all sectors is virtually no. We don't train what each other does. Okay. Certainly not trained culturally competent services. We're not trying how to integrate and introduce yourself into the community. But because of those integration gaps, the family is often hearing multiple messages. I've had I've seen I don't want to tell too many stories but I've seen families in tribal communities that when I go in to do audits of what they've gotten, I've had them hand me three separate treatment plans from three separate systems. And they're going, we don't know what to do. What is this? So integration ends up being, I think, a critical part of working, whether it's an urban or a tribal community, to say, first of all, we expect integration. It's a basic right of people that need services, is to have an integrated approach. And that's very, very hard to get. Now, the good news is, it's becoming critical. I love Olmstead. I have to say, you know, as an old guy doing this work, to see it come along and now to see it really taken seriously. So important to have that kind of creative, integrated approach. I'm just going to pause and let you ask any more questions. I'm sorry.
CATHERINE YOON: Thank you for these insights. I am going to ask Dr. West a question. We would like to hear more about building and leveraging relationships among tribes, the federal government, and other entities to provide behavioral health services to Native American children. Dr. West, you've used participatory research methods to identify needs for services in Native American communities. And develop services that are tailored to those needs. Would you be able to explain the approach you used, the purpose of that approach, and the outcomes you observed as a result? Also, what best practices can you share based on those experiences?
AMY WEST: Sure. So yes, so I'm primarily a researcher and an intervention researcher so I develop and test novel interventions or adapted interventions. Actually all of my work with tribal communities either urban or otherwise, has been around kind of creating these partnerships with the goal of empowering communities to actually generate their own understanding of their behavioral health needs and their own solutions. And so this model, you know, is developed over the last, I don't know, 30 to 50 years. Community based participatory research or also referred to as justice participatory research. It's a very different kind of model of conducting research. I mean, traditionally I think research, again, was conducted in a very kind of hierarchical fashion, you know, where the academic or the expert was kind of coming in, you know, had all of the power, was considered the knowledge holder or the expert, got to decide what questions were important, how the data was going to be collected and then own the data and did with it what they pleased. So you know, not surprisingly that kind of model, you know, resulted in a lot of very abusive abusive at worst. At best, not at all helpful or effective research with native and other diverse communities.
So this model of kind of conducting research has developed out of a recognition that that needs to change and we need to have a much more kind of social justice oriented approach to conducting research with diverse and marginalized populations, you know, such as our indigenous communities. So the model basically just describes one in which whatever academic or institution stakeholder actually forms a relationship with the community that is entirely equitable and equal in all ways. And that community members actually participate fully in all phases of the research project. And are actually considered the drivers of, you know, what questions are being asked, why is the research being conducted and what is its purpose, who is going to collect the data. In most situations the community is actually the owner of the data and gets to decide how it's going to be used, how it's going to be disseminated and that prevents a situation where researchers kind of come in, collect a bunch of data and leave the community, which is what has often happened historically, and so it never actually results in any sort of benefit to the community.
So you know, it's an approach it's a very dynamic cyclical approach, like there are kind of structures involved in the research project. There's also often community advisory boards, stakeholder community stakeholder communities that work on particular aspects of the project, either the generation of the, you know, questionnaires or surveys or tools that are going to be used for data collection, you know, to the interpretation of data and the dissemination of data. So there's often kind of different points of input and decision making. And so it's very iterative. Questions can change. Even designs, like models, understandings of the data changing over time in response to what the community members decide is important or needs to change as a result of kind of what's being uncovered in the research process.
What it really I think another goal of CBPR is to build capacity within the community. So what I have often done and I did a decade of CBPR research in Chicago with the urban community there and then in California, I'm working with tribal communities all over California using CBPR models and I've always had community members actually not only serving the project in various onboards or committees but actually as part of the research team. So I hire them to be the kind of critical presence on the research team so that it's really there's not really even a separation between the academic partner and the community partner, that that is as integrated as much as possible.
And so you know, all of these methods, I think really designed to do is empower the community to kind of take ownership and drive the research agenda to address the question or the problem as they see it and as makes sense and fits within their cultural and community context. So just as an example, the first CBPR project I worked on was with a Chicago American Indian Center and we got funding from SAMHSA, the substance abuse mental health services administration to build a system of around mental health service delivery in Chicago. And so the first step of that project was to conduct a qualitative needs assessment study. So we did focus groups with hundreds of Chicago, you know, native community members to ask them, what do you see? How do you define mental health in this community? How do you understand the risk factors and resiliency factors that contribute to what you see as the mental health challenges and difficulties in this population. How do you understand the services that are available? And what gaps they are, what works about them, what doesn't work about them. And you know, what do you envision for the future. If the needs of this community are truly to be met, what would that service system need to look like. And so those were the questions we asked. And it was community members that were asking the questions, that developed the focus group guides, that sat with us week after week and helped us interpret and analyze the data, that were on all of our publications, helped draft the report and that fed the information back to the community. And that ultimately developed our system of care model that we then used.
And I'll tell you what comes out of that kind of research is a really authentic and culturally grounded understanding of behavioral health in that community and what the services and service system needs to look like. And this has happened in every community, every different native community that I've used this approach with which to develop an understanding of behavioral health and services, what is needed there's a lot of different things that are needed and structure access and funding and structural issues. But substantively what they want is for their culture and their traditions and the indigenous knowledge they've carried over centuries that have kept their people well to be recognized and honored in behavioral health. What doesn't work for them is the western medical model coming in, you know, telling them they need to sit in front of a stranger for 50 minutes and tell them all their problems, you know, because that's kind of model that we use in our mainstream behavioral healthcare system. That is totally for their relational, communal culture, that considers kind of the integrated spiritual, physical, emotional and mental well being, that's a very bizarre concept. And that's why it's done nothing to move the needle in terms of addressing health disparities to use that model in native communities. So what they told us is honestly a lot of what my colleague, Dr. VanDenBerg just stated. They want integration. They want their own traditions and ceremonies and traditional medicine to be integrated it's not that therapy or western medicine is completely irrelevant to them. There are some services that are, you know, that they very much want in their communities, but that needs to be kind of understood and integrated in a very different way than it currently is. And they really want, you know, a total reconceptualization of behavioral healthcare to be one that, yeah, isn't just about these kind of clinic driven services but really, you know, reflects broader community and kind of more organic supports, you know, within the community to promote wellness and health overall. Yeah, so I'll stop there. But I think that is what the kinds of information that CBPR yields that is so incredibly critical, if we actually want to start addressing any of the behavioral health disparities and, you know, disproportionate rates of institutionalization and other kind of structural results of the fact that we haven't really taken this approach thus far.
CATHERINE YOON: Thank you. I would like to turn to Dr. VanDenBerg for some last thoughts on this topic of strategies for providing services and addressing challenges and accessing services. Dr. VanDenBerg, what recommendations do you have for Olmstead advocates seeking to improve coordination across state and tribal governments and expanding community based behavioral services targeted toward Native American children and families? Are there specific examples of effective coordination that come to mind?
JOHN VANDENBERG: Sure. I think, first of all, homes stead advocates should be really looking at what is the process to build buy in across our community. Does the leadership in that community, whether it's in an urban area like Denver, say, or a tribal community, do they really have an understanding of what is effective. Do they have an understanding of what that's going to look like, what strategies have to be in place. So is there exposure? Is there training? We have enough tribal members across the country that you can constitute training teams that are all people who are tribal members who have lived this work. So it's not just an outside Anglo like myself coming in and doing training. But it's really important to get that exposure at the top levels of those tribal communities or those urban tribal organizations.
I'll tell you a brief story on this that makes this point. I was there was a large group of tribal communities where a number of the parents who had children that were out of community got together, formed a coalition and went to the tribal councils in these various communities and said, we don't like this. Our kids are coming home and they're not better. This isn't working. And it's taking huge amounts of money. This isn't right. So in that case the tribal councils got together. I was asked to come in and do a day with this community. There were about 300 people in the audience from those communities, came together in one central community. And I was you know, I was told I was honored to be there. I was told that there are a couple of people in the room that really are in charge. And if they say anything you better listen to them. And so I was fine, okay, good. So about halfway through the day the one of the gentlemen that I was told was in charge just stood up and I knew enough to shut up. Okay. And sit down. And he said, Dr. VanDenBerg, I've got to tell you that we listen to you people, meaning outside behavioral health people, and we started putting all of our kids that left the community in a great big psychiatric facility that we helped fund down in one part of the state. And now you're telling us not to do that? Okay. Didn't have trust. Didn't have the sense that this could actually that we knew a better way now. Okay.
And the reality is, is that getting that training, that education Olmstead advocates should be looking for systemic approaches. System of care approaches across those things and providing that training, because otherwise there's not going to be an understanding of it from those top levels of those communities. That's the first response I have to that question.
I think there are Olmstead advocates need to learn the questions to ask when you're invited in or when you're reviewing or when you're looking at one of the questions that I always trained advocates to do is to actually say, let me look at a plan, okay. Let me look at a treatment, in quotes, plan, let me look at what has been given to this family. Learn to look at that plan and ask some critical questions. One question that I always found important was, who wrote this? Okay. Who is in charge? Who made the recommendations? And so often what I would find when we did the audit and backtracked through those questions is, the family would be so overwhelmed they would be sitting there nodding their head to whatever suggestions. That's not family centered care. Family centered care is when the family has said, what do you need to have a better life, tell us, educate us, how can we help that occur. Those are the questions that we should be asking for as advocates, whether it's Olmstead or just advocates for support and services.
So the other issue that I would say from a strategy standpoint is transition. Okay. Now, if a child does have to go to very brief out of open care home care, whether it's foster care or a neighboring community, what I want to ask is, what is transition like, okay. I would always recommend on transition that members of that support group around that family go with that child to that service that they're going to, sit with them, let the people there see who is around this child, get to know them. Then when the child has gone through stabilization, what does the transition back to the community look like. I always want staff from that organization that's been doing treatment and I hope I'm not being offensive here. I believe in therapy. I spent a lot of years becoming a child shrink. The fact is treatment has been redefined by the way Dr. West and myself are talking about. But what we want to see is that I want those staff to come back into that community with the child, follow them back and meet with the people, meet with the family. That to me is humane, positive transition. However, how often does that occur? Virtually never. But we know that it works when it occurs. We know that that's a good strategy in terms of providing effective services. I'll pause at that.
CATHERINE YOON: Thank you. That is very helpful. Thank you to both of you, Dr. VanDenBerg and Dr. West. I will now turn it over to Deena Fox for the next segment of the workshop.
DEENA FOX: I think we've already almost begun to make this transition to the final topic that we have before questions. And that is, for those of us who are not clinicians but are actually advocates, attorneys, working in this field to try and help families access services in the most integrated settings appropriate, I want to translate the skills that you all have been talking to us about from the clinical context to the legal and advocacy context so that we can ensure that we are doing our best to also meet and honor the needs of the communities that we are working with.
So I'll start with Dr. West, and you've already started to address this in some of the description of your research methodology. If you were meeting a Native American family and wanted to learn more about their experience, accessing behavioral healthcare, what are some of the things that you would do in that interaction and what are some things that you might avoid in that interaction to, you know, be both respectful and get the most valuable information?
AMY WEST: Sure. So I think there's kind of the questions that I would ask and then there's the methods that I would use. I think in terms of the approach or the methods that I would use, I mean, I think if anything it kind of reflects the CBPR process that I already described as condensed into an individual, family format, but you know, I would really want to provide and I think what's really important is to just provide space and time to build a relationship of kind of trust and collaboration such that they're actually going to share with me what their true needs, hopes, desires are. You know, there is an understandable legacy of extreme mistrust that native people have about anybody coming in from the outside. And I've even been as somebody who is part native, I've still experienced this coming into tribes that I'm not from or communities I'm not from. I mean, there's so much just mistrust, hesitancy, you know, lots of walls built up around outsiders coming in, trying to do anything or making any sort of promises about trying to make things better. And so I think the way that you unravel that, you know, is by, again, taking that stance of, you know, humility and humbleness and the stance that you use when interacting and providing that space. Native people are storytellers. Providing that space for them to tell their story and tell it how it makes sense to them and with, like, how the parts all fit together, you know, for them. And I think, you know, again, what we what we are kind of trained to do often in our field, in our, you know, respective fields is to position ourselves as the expert and to kind of come in and explain, you know, how how things are or, you know, fit what they're telling us in our models of understanding and that's very silencing. You know, native people have been silenced for 500 years. They don't want to be silenced anymore. So I think if they perceive that you're just trying to, you know, steamroll them and fit them into a system or model expertise of something that you have an idea about, they're going to shut down and they're not going to share the knowledge with you that you really need to have in order to actually solve the problem that you're trying to solve.
So what I would do is just to take a stance of humility and curiosity to ask really open ended questions and to provide appropriate and adequate space and time for them to kind of tell me their story in the way they want to tell it. And I would not, you know, interject every two seconds and cut them off and try lecture them didactically about all of my various knowledge and learnings from because I have a Ph.D. or because I am considered an expert in whatever field.
DEENA FOX: Thank you. Thank you. Very useful. Dr. VanDenBerg, in the system level, one on one conversation, you've already started to give examples of how you've approached this but if you were trying to learn about a community's experience, trying to get more of a sense from leaders in a community about what patterns they're seeing and what remedies that they would like to see, change the circumstances. What have you done in the past and what advice do you have for us?
JOHN VANDENBERG: Sure. First thing I would say is check your assumption at the door. We make so many assumptions about cultural competency and just to be able to go in with sort of a tabula rasa approach and say I'm here to learn and it going to be really different and I need you to teach me, that is an approach first of all, when you do that they're not going to believe you. You know, you're going to be viewed with suspicion. It takes experience and time to do that. And I think when you're with I can't tell you how many dozens and dozens of times that I've done this but when you're with tribal leaders or you're with an urban setting with leaders of those organizations you really need to go in and just have listening time. I always say, stay a couple of days minimum. You come in and it's an hour you're there and then you're gone, you're not going to build trust that way. Stay a couple of days at least. Almost always over the decades, I would ask if I could stay with a family, and I would reimburse them. Sort of Airbnb style reimbursement. But sometimes they didn't trust me enough to set that up. But when they did, we were able to do engagement of that community quicker and do the listening that has to occur, we would be able to do that quicker. And again, I wasn't trained to do that in graduate school. That's just good manners. It's common sense. It's the way we should really be looking at and engage people. Check in your assumptions at the door. Again, we often make assumptions about culture. I was working in one tribal community where the first two families referred to wrap around by this group of people who live there, who were running the wrap around were two single moms living side by side in government supplied housing. You know, and this is this particular tribal group only has 1200 members. They were 10,000 members back 100 years ago but there's only 1200 left. And you know, here's two single moms side by side. You would assume some real cultural similarity in how those moms viewed the world. Couldn't be further from the truth. They viewed the world very differently. Their own family culture, traditions, how they handle rules. That was all stuff they had to be learned individually. Now, there was a cultural overlay of being, you know, two of the remaining tribal members that you had to learn. We learn it by asking for instruction, okay. But anyway, we ended up very successful wrap around plans for those oh both families. And the plans went audited and I did this in partnership with an attorney who was an advocate for the tribe. When we audited those plans, they were very, very different. That's what I wanted to see. Okay. So leave your assumptions at the door.
Outcome data, I almost always would share let's say a tribal community had done a couple of years of keeping his home and I would almost always be helping them in pulling that information together. And outcome data, they don't use the term "outcome data." Just I want to see if this works or not. I would present that to the tribal councils on a periodic basis and say, okay, here are the indicators you chose and here's what the results are. Okay. So those are just off the top of my head, those are my recommendations.
DEENA FOX: Thank you both. Those are really useful and practical tips. And I'll open it up to both of you if there's any other advice that you want to give the group before we go to questions.
JOHN VANDENBERG: The only thing I would say is what I started with, is this is a moving target. Reducing institutionalization, putting this in. It is two steps forward, three back, five forward, one back and it's long haul stuff. It's not going in and doing one time work. The drive of some people to remove kids from these communities has been there for decades and it will continue to be there. Vigilance is called for, folks. And we love you for what you're doing, all of you. Thank you.
AMY WEST: Yeah. And I think what I would add, you know, similarly, is just that this kind of work and building the kinds of relationships that I think are necessary to truly honor the community and cultural needs in these situations, it takes time. Often with tribal partners I've made in my research it's taken years for me to build trusting in enough relationships to actually engage in work. And that can be challenging because we're all in sixes that stuff comes in that we need to deal with immediately. And what we do seems really urgent. There are certain situations that seem really urgent. So I think you kind of have to figure out a way to balance both, right? And if there are anyways like as an institution, you know, I don't know whether the DOJ does this or to kind of build in structures so that there's ongoing input, whether it's a native council or, you know, a relationship with native communities that you can build that will give you kind of continual ongoing input. Like, for example, in the research world, I served on a lot of committees, like committees of native researchers and investigators that are giving feedback and input to the NIH, the National Institutes of Health, around their research priorities with respect to native communities. And it's an ongoing yeah, the priorities are shifting, the projects are shifting but there's a structure there to make sure that there's kind of a mechanism for ongoing relationship building and support. Knowing nothing about the space you're in I would encourage ways to build the not just on a project based level, so when you have a project in a particular community, obviously there are certain methods you're going want to use to approach that community and build trust and partnership with that community but just thinking more holistically and the evolution of your work over time, whether there's ways to kind of build a structure and mechanism for more community native community input into the gestalt of your work and the policies that are being developed and changed over time and making sure that there is community input into that process as well.
DEENA FOX: Thanks. I'm going to turn it over to Patrick, I think, as we move to questions.
PATRICK HOLKINS: Thank you very much, Deena. I see one question showing up in the chat here, which I will go ahead and ask. Feel free to drop other questions in the chat. How can lawyers/advocate work to promote collaborative and trusting relationships between states/providers and tribal communities when working to rebuild community based mental health services in states? John, do you want to take a crack at it?
JOHN VANDENBERG: Yeah. I think the first thing that lawyers and advocates need to do is really learn what these new models of services are, because they're very different than the standard old conceptions of what community based mental health services are. And radically different. And we get radically different outcomes in a positive way. So I think learning that and there's a tremendous amount of literature now out there about it. A federally funded and other research that you can get acquainted with. I would refer you to the National Wrap around Initiative, just Google that. And you can access literally dozens and dozens and dozens of outcome studies to help get educated about, yeah, this is a little weird, this whole individualized family driven stuff, this is a little different but, most importantly, are the kids and families better, are they stable. That's what you need to do. That's the key thing in promoting these trusting relationships. Start with your own education. And when you go in and then as you've heard, listen, listen, listen, listen before you talk. And when you share, really share from the heart. Share your own stories. I was just recently in a tribal community and talked to them about my own grandfather who was in a state mental hospital for 40 years, you know? Sharing with them that and what that was like, you know. And that made all the difference in the world, to listen and tell those stuff from your heart. So that's my first response to your question, Shree.
PATRICK HOLKINS: Thank you very much.
AMY WEST: I was just going to add, if I could, you know, I think one of the things that you also building upon that, that you can do, you know, especially when you're in spaces, you know, like this conference or places where the focus isn't necessarily all on the native community. Because you are making real efforts to educate yourselves and work with these communities, you have knowledge that you can now share with your colleagues, like with the other kind of institutions and stakeholders that you interact with. That is really important and important for people to know. It's like the difference between not being racist and being anti racist. You could just sit there and not say anything and not but I think when you're in those spaces with the knowledge that you have now and that you're building with respect to the importance of these issues in native communities, bring that voice to the table in other settings, too, because I think part of why there's so many disparities and so many challenges in the interface between states and providers non native or providers and kind of state institutions and native communities is just because there's a lack of knowledge and understanding. So the more that you can do to promote the awareness and knowledge and understanding in the various, like, settings that you're in, as attorneys, I think that, you know, all the better and you never know when it's going to, like, hit somebody or be received by somebody who really needs needed to have that information.
PATRICK HOLKINS: Thank you very much, Dr. West. We have about nine minutes left before we close. I want to pause and see if there are any other questions from the group. If not, then I have one of my own but I want to make sure that the audience has the opportunity to ask any questions that they have.
>> I have a question. I was wondering to what extent you're seeing programs that are for funding that is specific for Native American children, especially in cities or is it more a situation of grants or funding for children in general and then wanting to make sure that especially in cities with larger populations of Native American children, that the providers are educated and knowledgeable about issues specific to Native American children and the trauma that Dr. West was talking about.
AMY WEST: So there are there is actually even over the past decade, I've actually seen a lot of growth and synergy around the urban, you know, Native American healthcare landscape. There's now a national center for urban Indian health in DC that's basically charged with coordinating there's I think 44 or 48 urban Indian health centers that sit in various urban cities with large urban native populations. So this national center in DC that's a nonprofit but I think receives a lot of federal funding, actually is charged with kind of overseeing and coordinating and helping advocate for kind of increased funding and increased budget allocation into those urban settings. And that includes kind of federal funding through Department of Health and Human Services, it includes Indian health service funding. I know part of how I've been funded here in California is actually through the federal government who is then given money to the state governments in California, the Department of Health and Human Services in California to address the opioid use epidemic and state of California set aside a large proportion of that funding to focus specifically on tribal populations because of the incredible disproportionate rate of opioid related deaths in American Indian populations in California. So I think there I mean, there are specific funding mechanisms, whether it be for kind of program development and service implementation or certainly there are research grants through NIH that are specific for native children and are starting interventions in native children and there's a whole mechanism through the administration for children and families that funds home visiting in native communities. So you know, I think because of advocacy and, you know, and the work that a lot of us have been doing in this space over the last, you know, several decades, you know, there's a growing amount of attention and funding, you know, being put in the right places. But, you know, there's it certainly does not match yet the need. There's definitely the need for I think a lot more in terms of specific funding to these communities.
JOHN VANDENBERG: I would add to that that to get creative about how you there is federal money. Of course SAMHSA has had a series of tribal focused grants since the early '90s. And we expect those to continue. But how they're carried out has really been mixed. Okay. For all the reasons you've heard, you folks have heard today, at the heart of it though is a lack of understanding of what these communities really need, urban or tribal communities. And you know what I always did and whenever I was privileged to be able to work with a tribal community, urban community, is I would always put family members in front of the funders. I can't tell you how often I would say, okay now, I have a favor to ask. I need you to go to DC with me and meet with the head of SAMHSA, okay? You know. And I'll make sure that you understand what we're doing, but that person, that may have never talked to a person like yourself that is living this day by day. And lots of preparation, lots of work, and often later on, you know, years later when things were much better, that person in SAMHSA would say it changed their life to hear that. I'm used to hearing from people with the big degrees. But to hear from the actual consumers. And so set that up. Try that out. Do that, you know. That really I do back to Shree's question about what can lawyers and advocates do, develop those partnerships with people that live this that can and prepare them and support them in doing some of that direct education. It's powerful. Powerful thing to do.
PATRICK HOLKINS: We're about out of time. I did want to give Dr. West and Dr. VanDenBerg an opportunity to share any resources. You mentioned the national wrap around initiative. If there are other places you would direct folks to or if you would like to share information, I want to give you the opportunity to do that for folks who may want to research this further.
AMY WEST: Yeah. I mean, there are a fair amount of resources, both kind of policy related resources or research related resources. So you know, if it gets it's hard to point to people to things more generally but I would just say that I'm happy to help point people in the right direction if they have certain questions, you know, related to historical trauma or behavioral health systems in native communities or research approaches that have been used to develop service systems or interventions in native communities. So I just offer myself as a resource. I'm always happy to have people e mail me or reach out to me. I've been in the field long enough to I don't by no means have all the answers but I usually have good places to send people, you know, to get the answers that they want.
PATRICK HOLKINS: Thank you very much. Dr. VanDenBerg, any final words?
JOHN VANDENBERG: I as well would be happy to answer any questions e mail. I no longer travel outside of my home community. But I clearly can spend time and often people will call and say can we talk to you on the phone, do a Zoom call. I'm always available for that, no charge. I love doing that in my aging years, as we say. But I do I do think it's so critical. Again, I just want to stress, Olmstead is at the heart of this. When I saw Olmstead, I just said, this is maybe what we can use to stop this in the cycle that Deena so profoundly talked about. This is really good stuff. Keep it up, folks. Thank you.
PATRICK HOLKINS: Thank you very much. This has been just really fascinating. I've learned a lot. I hope everyone did as well. Reach out to me if you have any questions. Thank you so much all for joining this presentation. We're going to sign off now. Have a great day. Take care.
AMY WEST: Thanks for having us.
JOHN VANDENBERG: Thank you.