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NASMHPD Webinar

Tuesday, June 9, 2020

1:45 P.M. ET

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Communication Access Realtime Translation (CART) captioning is provided to facilitate communication accessibility. CART captioning and this realtime file may not be a totally verbatim record of the proceedings.

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>> Good afternoon, everyone, and welcome to today's webinar titled "Improving Access to Care Through Family Involvement & Engagement in Coordinated Specialty Care: Innovations & Best Practices". Sponsored by SAMHSA and developed under the TA Coalition contract and presented by the National Federation for Families for Children's Mental Health. My name is Kelle Masten and I would like to thank you all for joining us today. Before we introduced today's presenters I would like to go over a few housekeeping items. Today's webinar is being recorded. The recording along with the PowerPoint presentation slides will be sent via email within three to five days to all those who have registered.

However, you may download the PowerPoint slides now for your convenience.

At the top of the screen where it says PowerPoint presentation.

Please click on upload file to download the slides.

For participants only audio is being streamed through your computer speakers with no need to connect by phone unless necessary. In which case the phone number is listed in the notes section on your screen.

If you are having any technical difficulties during this webinar, please type your comment in the Q&A pod on the right side of your screen and someone will be able to assist you.

Please also type your questions for the presenters in the Q&A pod. And at the end of the presentation, we will ask as many as we can. Excuse me.

At the end of the webinar, we ask that you take a few moments to complete the short evaluation to give us feedback. Please know that we do not offer CEU credits for our webinars but we'll send you a letter of attendance upon request. My email address will be available at the top of the screen during the evaluation.

I would like to thank SAMHSA for allowing us to share this information with you today. And again, thank you for joining us.

I will now turn it over to today's moderator, Dr. Lynda Gargan Executive Director for Federation of Families who will introduce today's presenters. Lynda?

>> DR. LYNDA GARGAN: Thank you so much Kelle. Thanks to all of you for being with us today. We are so excited about this webinar. I think you are going to find this very, very informative.

We have two outstanding presenters. And I would like to take a moment to just tell you a little bit about them. First let me tell you about Nev Jones.

Nev Jones is the Assistant Professor in the Department of Psychiatry at the University of South Florida. And faculty affiliate of the Louis de la Parte Florida Mental Health Institute. Her research and program development work have focused on Coordinated Specialty Care. Including research on family and youth engagement. Peer support. And influences on trajectory to and through care.

In addition to her research and academic roles, Nev has co-directed two peer and family-run organizations providing technical assistance, training and direct support to family members and individuals experiencing psychosis. She identifies as both a family member and a receipt of specialized -- recipient of specialized early psychosis services.

And now let me introduce Donna Fagan. Donna is a partner with Bluebonnet Trails Community Services in Texas. She is the parent of four children and eight grandchildren and has 30 years of experience with children's mental health. Donna and her husband have adopted two grandchildren, both having mental health challenges.

She is a Certified Family Partner, and works in community mental health, where for the last five years she has served families, helping them navigate community mental health and other systems of care.

Donna has served families as their Family Partner in state supported and YES waiver which is wraparound services.

She currently serves families of adolescents and adults in an early onset psychosis program.

I want to remind you just before I turn this over, please put your questions and comments in the Q&A box. We want -- we would love to have strong participation today. So please share your thoughts and questions. And with that, I will turn this over to Nev.

>> DR. NEV JONES: Okay. Thank you, Lynda. We'll go ahead and get started.

If anybody out there listening in can't hear me at any point, feel free to say that in the Q&A. Recently I did a webinar where that happened and I didn't realize it and I felt bad. So I can always speak up and make sure that the microphone is really close to my mouth. So to get started, I guess to sort of add to that lovely introduction from Lynda, I do identify both as a family member and then as a client who went through a specialized early psychosis program.

These are both I think critically important and distinct perspectives. And from the family member perspective I would absolutely say that I think a lot of my insights into just how complicated and at times painful navigating this space can be really do, you know, kind of stem from that first person experience.

Okay.

So just the overarching kind of continuing education objectives of my portion of the presentation are to describe different strategies used within Coordinated Specialty Care to support and strengthen family involvement. I'm going to explain the REORDER approach as it's been implemented within OnTrackNY. I'm going to list and discuss some potential cultural and socioeconomic barriers to family participation.

And there's more in these slides. But those are sort of overarching objectives.

So why involve families? And I'm just looking at the attendee list. There's 146, 145 people. Just guess that there is a big mix in terms of providers and advocates, community members, probably some of you who have extensive experience working with families or maybe as a family member yourselves. And others who are maybe less kind of familiar with this area.

In terms of the literature and the sort of underlying reasons and rationale, initial -- in the initial phase, a young person is first experiencing psychosis. And so family members tend to play a really major, major role in initial detection, seeing that something is wrong. Assisting a youth or young adult finding treatment or finding other kinds of supports and services. In many cases navigating the legal system so we know it's very, very common, especially in the context of kind of a first episode for young people to come into contact with the legal system, whether that's police. Whether that's breaking into somebody's home and getting arrested in the midst of an acute psychotic state.

And then navigating school and work.

Which in some cases is immediate. Somebody needs to reach out to maybe a young adult's employer or college, university, high school, and try to troubleshoot very proactively. That's the earliest phase. Then once there's some engagement with the mental health system, ideally Coordinated Specialty Care. Attending appointments and helping make sure that the young person can get where they need to go. Providing financial support to families are -- a huge, huge financial support and that extend for many years. Instrumental support so literally just providing housing. Very, very, very common when you look at research on folks not even just young adults but adults in general with psychosis is they are very often still living with family members, living with parents.

A huge amount of emotional support. And often what happens is that friends and peer groups withdraw or are lost maybe because the young person was in college and had a lot of friends and that was in a different state and they are coming home. And now none of these friends they have made at college are around anymore. So a lot of those emotional support needs can fall back on the family.

As a treatment, recovery, progress, getting back to original goals. Returning to school. Returning to work. We know there are some supports built into Coordinated Specialty Care. But there's also a huge amount of financial planning. Possibly moving across state lines. And family members really tend to be very centrally involved.

Assisting with or troubleshooting the longer term costs of care. Maintaining hope and optimism on behalf of the young person.

And then for some long-term intensive support, family may end up serving as a representative payee. So across this continuum there's just this major, major role that family members can and very often do play.

Just to summarize some of the fundamental challenges from the perspective or if we approach this from the perspective of a family member trying to navigate initial onset and movement into treatment like Coordinated Specialty Care. So there are huge ethical dilemmas and questions that come up.

Do I call the police or not? Do I call 911 or not? What do I try to indirectly pressure my child to take medications to attend appointments she doesn't want to attend. How does the parent for youth who are transitioning who when things start out, they are under the age of 18 and then they turn 18, how to ethically grapple with that transition. And what that means in terms of appropriate roles and responsibilities.

For the existential area, I want to almost take these ethical dilemmas one step deeper and say there's really, really fundamental questions at play about autonomy and what that means in the context of psychosis. And what it means to respect somebody's experiences when they maybe seem self-destructive. When it seems like they are leading a young person to maybe give up on things that once upon a time they deeply cared about.

So just these fundamental deep, deep challenges around what that means and how to think about what one's loved one's identity is and how that identity has shifted. Who are they? We see a lot of language out there about family members feeling like their child as they knew them for example has disappeared.

And so these really core questions of identity. And they are very, very, very challenging to sort through. And therapy can help. But I want to make the point that it's not necessarily just about therapy. Like any really major life experience it's not just about learning better problem solving and therapeutic processing. It's also just coming to terms with these deep challenges. And dilemmas.

And then of course, it's interpersonal. It's having to learn in some cases really renavigate, recalibrate a relationship with a child or loved one. I keep saying child. But of course it could be a sibling. It could be an extended family member in some other way.

But for whom there's been a relationship. You've been in a relationship with this young person for probably their entire life. And having to really figure out, what does this relationship look like now? How do I relate to them under these sometimes very changed circumstances. And that can also include things like expectations for what that young person was going to do in their future or you hoped or assumed they would. And how that has maybe shifted. But it's also tricky ground to navigate. Holding onto hope while being flexible and making adjustments.

So there's just a lot here. And that I think is the main point I want to make. And a lot of the time there's just not the resources even in Coordinated Specialty Care to really go there in terms of the full spread of challenges that family members are up against.

And the issues that they are having to sort through.

And then I would just add to this that cultural context, racial context, structural context add all kinds of additional layers and considerations here.

So a parent, for example, who has other children, especially maybe if they are younger, can end up with all kinds of particular ethical dilemmas around how to balance the needs of let's say a child who has developed psychosis with the other children. I have multiple times actually run into cases where family members were told because their child with psychosis maybe was deemed to be a threat to the other children, that they literally -- that child welfare would come in and remove custody of the other children if they did not remove the sibling with psychosis from the household. So there's all kinds of circumstances and variations in peoples' lives and contexts that can further push some of these issues.

And then the basic overview of the how. So what are different strategies that we -- strategies and program components that we find if we look at the landscape of early psychosis services. Both in the U.S. and internationally to some extent. So family psychoeducation is very common in both the OnTrack model and the navigate model have a very core family psychoeducation guidance and practices. And there are differences between them but I think there's also a strong underlying commitment to psychoeducation and the Eastman model and some of the smaller models we find in different states. Psychoeducation can be group based or individual.

And then there are also family groups. Certainly there can be multi-family groups. Psychoeducation or sometimes it's referred to as multi-family problem solving. But also family-to-family groups that are maybe less structured or there's an existing NAMI model for family-to-family groups. So those can take on different confirmations. But basically it's family peer support in a group setting. There can be more skills focused family groups which might be provider led rather than Family Partner or family peer led and other forms of family support. So providing a space to meet needs of family members in other ways.

There's of course also family therapy models. In the UK systemic family therapy is the identified evidence-based practice. Within the early psychosis space. There are several forms of brief family therapy that you see some programs implementing. Open dialogue is maybe not as familiar to some of you. It is a finish approach that really emphasizes bringing together not just family members and their loved one who maybe at the center of concern but also extended social network members and engaging in open dialogue with providers so that everybody is sharing and working through their feelings and challenges together in the same space rather than a lot of siloed meetings happening. And providers meeting behind the scenes amongst themselves to discuss what they think is going on.

Maybe having separate meetings with the family. Trying to encourage that to all happen. In a much more dialogic way.

And there are specific roles that can be tied to Coordinated Specialty Care. So sometimes a provider has a dedicated family psychoeducation role. And sometimes that's just one person. In some programs that's going to be a dedicated part of multiple different team members' time.

Some programs actually do have a dedicated family therapist where there's the capacity to really potentially provide more in-depth family therapy. And then there's Family Partners or family peers which Donna is going to talk a lot about what implementation of that role looks like in Texas.

In terms of assessment and decision making, there can be systematic integration of family needs and strengths, assessments, at intake or sometimes in an ongoing way. Cultural formation and cultural formulation both involving the client in terms of the family, their family's expectations and cultural values and any issues associated with culture, cultural identity, race. And also cultural formulation can be used directly with family members or significant other members of the social network.

And then there are client-led preference models like REORDER which I'll talk about which is implemented in OnTrack and that focuses on putting the client in the drivers seat in terms of making decisions about how they want their family involved. So this is kind of the range of potential components. And I don't want to say that this is exhaustive but I think this is a pretty good list of strategies that we find in the early intervention space.

My again, kind of overview of thoughts on next steps for the field or what remains are underdeveloped. I think there's still a huge need to better optimize the engagement of family members. And I think really in particular focusing in on families who choose not to engage. So understanding why they are making that choice. And how to meet their needs. And here there are absolutely racial, ethnic, cultural issues at play. Structural barriers. Structural vulnerabilities. Distrust of systems. And I'll talk more about that later on in my presentation.

The transition to legal adulthood. And how one supports family engagement across that transition, which can be really challenging.

Creating and providing an expanded array of involvement options and opportunities.

So really if you look at my last slide, most of the focus there was how do we meet the needs of family members and involve them in the services that their loved one is receiving.

But that's not really getting to how do we involve family members in designing programs, in designing and thinking about innovations. In quality improvement, evaluation and research. And this, again, just remains very, very underdeveloped.

Family Partners and peers, Donna and kind of what's been happening in Texas is a real exemplar of what this can look like, but if you look nationally, there's still very limited implementation and utilization of paid Family Partner roles in CSC. And there are various financial and financing barriers there.

And then comparative effectiveness. So at some point we have to start asking the question, right, is this strategy better than this strategy? Do we see way, way, way better outcomes in a program that can provide brief family therapy to family members and focused on their own needs? Versus in a program let's say where that's not possible but psychoeducation is really well integrated. So I think those kinds of questions about what really works better we largely don't know.

Direct support for family members. So it's one thing to support the family member in the context of them supporting their loved one. And another thing to really think holistically about what their needs are. And have the capacities and resources as a program to meet those needs.

And just as an example, I'm doing a project right now that looks at referral pathways from the juvenile justice system into care for youth with recent onset of psychosis. And one of the issues that one runs into among family members who choose, for example, not to enroll in a early psychosis program is just huge, huge financial and transportation barriers. There's no way they can get the kids there. They can get themselves there. And to really solve that problem, we really have to start to think about poverty and financial equity and how would we go about trying to address those underlying more structural issues in terms of the poverty that many of the families served by these systems are experiencing.

And then again, even I slip up a lot of the time as I've noted and revert talking about parents, a lot of the times the primary caregiver is the parent but not always and also there are many other family members who end up or are involved. And that can include children, even of young adults who end up in Coordinated Specialty Care, it's maybe not the most common thing but absolutely there are parents with young children. Who are themselves ending up in CSC programs. Siblings, romantic partners. So maybe not necessarily married or more permanently partnered but dating and romantically involved so we just don't have a lot of resource development there.

Family involvement after Coordinated Specialty Care is a huge area that I'm particularly passionate about. There has been very, very little work to look at and think about what it is that family members independent from clients need during the transition out of Coordinated Specialty Care and reintegration with more status core or mainstream services and it is hugely important because as wonderful as it can be to be involved initially with a program that really involves family involvement we know that's not necessarily the norm and more mainstream services and I think we really have to think about how we approach that as a field and what kind of policy and reform work we need to maybe engage in to try to bridge this world of CSC and practices and values that are common there with other kinds of programs that young people are likely to end up in.

And then I think really thinking outside the box and exploring other diverse approaches and philosophies so there are some commonalties some would argue between psychoeducation and open dialogue and also significant differences in underlying values and philosophy. At least as their respective kind of proponents and Thought Leaders would describe them. And I don't mean to be representing either. But I'm just saying there are different ways in which we can approach this kind of work and I think diversifying how we're thinking about the issues is always a good thing. And helps us innovate. Helps us get out of these sort of ruts we get in. And not just become overly narrow in the way we think about inviting people or meeting needs.

Okay. So a little bit about what's happening on the ground. In terms of what we know about overall race and extensive family involvement and engagement in Coordinated Specialty Care, one of the challenges is that different programs measure family involvement and family contacts differently or over different time periods and it makes it hard to compare. And monthly participation in psychoeducation ranged from 22.5 to 48.4%. In the Washington state Journeys program, 82% of families participated in at least one family psychoeducation session over the course of one year. For Arizona's epicenter program there was a 22% participation rate in individual family psycho ed, 44% in group psycho ed and OnTrackNY, there the metric is not participation in psycho ed but just contact with the CSC team. In each quarter over the initial 12 months the average rate was 42.4%. Or no sorry the subgroup of family members who over a 12 month period maintained contact in every single quarter where data collection happened was 42.4%. A mixed pattern. So contact in one quarter but not the next but that maybe contact again, 21.2%. No contact whatsoever 2.9%. So a really small group. And then that is not accounting for young people who for one reason or another discharged before they hit the 12 month mark which is 33% in that program. And again that's also not consistently reported in papers. I think the high-level version of this is to say if you look at comparator data from mainstream adult mental health services across the board these rates are higher and there's much more access and opportunity, certainly to be involved in for example group psychoeducation or to meet with teams but it's not perfect.

We're not necessarily reaching everyone.

Next I want to talk about OnTrackNY's client driven preference model and the foundation for this approach is the REORDER model, which was originally developed and tested within the VA system so it was with older -- not necessarily a young adult population, a much more standard adult population. And the goal was really to promote greater family involvement given a lot of research suggesting that for a variety of reasons on the adult side families end up not involved or not able to get involved.

And so the idea is is really a structured consultation process that begins by talking to clients. Asking them what their preferences are. Thinking through that so it's not just a, do you want Option 1, 2, 3 and we're done? There's a real process there.

There's thoughtfulness, there's decision making support tools and assessments that are integrated. Then if indicated by the client meeting with the family. And then really integrating an involvement plan that really aligns with what the clients want. But is also open to revision.

And so that could look like I'm totally okay if my family member gets psychoeducation but I don't want them to be told by the clinicians whether I'm taking my medications or not. So whatever those parameters or restraints are, they are really respected by the team.

Empirically what we see at OnTrackNY is that in terms of clients served to date, 59% at baseline indicated that they were fine with unconditional family involvement. No constraints or conditions, 35% wanted certain conditions. And unfortunately we don't have finer grained data on what those conditions were.

And then really only a small group, 5.9%, said, I just don't want family involved whatsoever. In any way.

And then I will just add -- oh, yeah I do have the little graph here shows this so the actual percentage of families with team contact during the initial service year. So above 84% in the First Quarter. So the first four months of enrollment. And then it does go down over time. But I think overall what we're seeing is that implementation of a client preference framework does not adversely affect family members' involvement and may increase it. Which is what the original REORDER trial would suggest. That when we're really respecting peoples' preferences and entering into a real shared decision making process, that actually increases involvement and satisfaction with that involvement.

I'm going to skip over this. But I encourage people who are interested in open dialogue just as a model that maybe pushes us to think a little bit differently to find out more.

Right now in the UK there's a huge multi-site trial called ODDESSI to implement open dialogue in British early psychosis programs. So this is being piloted and tested in a pretty major way in early intervention settings.

Okay. Yeah, so this is just from a survey that I did about a year and a half ago I guess it closed so hopefully this has increased. But just to give you a ballpark indication of implementation of Family Partner, family peer roles in the U.S. and this is about 120 U.S. programs and then more internationally. But of the U.S. programs, almost 50% at that time had a Peer Specialist. Just over 70% had a dedicated supported education and employment specialist. Less than 30% had a Family Partner or peer.

And then I wanted to give you guys a little bit of data about ethnic/racial/cultural intersections.

So on the left side, this is actually a table from a publication of mine based on data that I was working with in California. That looked at reasons for disengagement early intervention services and we found 17% of the team a primary reason for disengaging was the family. The family was -- were the ones initiating disengagement from the program.

And when we looked at the racial demographics of those families, they were all ethnic racial minority. And I did some kind of qualitative follow-up work to try to unpack, okay, what's going on there. So I'll talk a little bit about that.

The second table is from a forthcoming publication using data from the OnTrackNY network. And we, again, overall identified really high rates of family involvement in Coordinated Specialty Care. But pretty pronounced disparities and involvement between black and white families.

And I think, again, there's other data analysis, navigate data, that found the same thing particularly in terms of family psychoeducation.

And so I want to say a little bit more about work that I've done to try to unpack these issues. What are barriers to family engagement and involvement? Particularly in a kind of intersectional context that considers racial, structural, socioeconomic and cultural factors and contexts at play.

So this first slide, these come from interviews with African American families. These are representative quotes on the right side. And so I think one theme that we identified was just an underlying lack of trust or perception that there are gaps in understanding. So quote, how can some young white therapist with no kids know what it's like to raise a black son in America? And I remember when we -- when I interviewed this particular participant, she was explaining what it's like to go flu the criminal justice with, again, with a -- criminal justice system with a black son and I remember her saying things -- I can actually see this interview even though it was years ago talking about, you know, they don't know -- you don't know what it's like. The way that the judge looks at me. The way the judge judges me and has no idea where I've been through or what I'm coming from.

So kind of this context of, right, feeling very judged around issues of parenting and these really, really strong racial overtones there.

And that can be consistent through multiple different kinds of contact with the system. Maybe it's child welfare. Criminal justice and then the mental health system.

Unacknowledged intersections between race and psychosis. So in this interview this parent was saying, I got at that think that the police presence in the neighborhood, harassment, shootings, that that's part of this but I never heard anyone in the program say it. So part of this has to be what's going on with my child. But it's not validated explicitly or visibly in the program. And that doesn't necessarily drive a family away completely. But it can chip away at and erode trust and erode this feeling of being seen and understood.

Lack of time and resources. So this just comes up again and again across multiple projects that I've done now. Interviewing families. Having responsibilities for care of other minor children. Having other disabled family members. Working multiple jobs. Not having transportation. Having to deal with unstable housing. And then in some cases I think attributing psychosis to drug or alcohol use. And not knowing what the cause is there. In a context maybe in which there's let's say in a neighborhood in which drug use or young men or teens are hanging out maybe and smoking pot or drinking and that. Not uncommon but teasing out the difference between that and psychosis.

In some of the local interviews we've been doing here, there are so many burdens on the family that they might actually opt to go to a simpler more straight-forward medication management clinic because it's easier to handle than this intensive wraparound model which on the one hand, it seems like, yeah, it offers so much. But it can also be overwhelming I think to somebody who is already trying to deal with a million different things without adequate resources, without adequate financial support and just really, really stressed about paying the bills.

Provider perspectives and some of this was not just about the African American community. But issues related to immigration and I think family members really coming from a really different cultural perspective in terms of how they understand services and how they understand what psychosis is and what it means.

So one of the themes that has come up is cultural stigma. So basically fears among the family member that if word got out in their cultural community about their child or about a diagnosis of psychosis, that they would be -- that both the family would be stigmatized and the young person. And therefore, not wanting to be seen maybe walking into a clinic. Maybe not wanting a translator there. Because that translator might, in fact, not respect confidentiality. And word might get out in the community.

Cultural differences in how treatment is understood.

And that can play out in all kinds of different ways. So there could be as this quote indicates, high value on authority. So shared decision making might seem like a really culturally foreign construct. But we can also certainly see a whole range of different ways in which treatment and providers and the role of the provider might be understood.

Different cultural expectations of psychosis itself. And that can be huge if you're from a culture in which hearing voices or conversing with spirits is normative, it might be a very different thing to think about a child experiencing psychosis. And can really collide with a treatment system that tends to have a fairly narrow -- I don't want to say necessarily biomedical but sort of clinical, western clinical view of psychosis.

So within the framework of a disorder rather than if we look both historically and culturally at times and places where that line, that dividing line isn't necessarily so clear. And unusual experiences are more part of what is considered just the range of human experience rather than necessarily indicative of a disorder. And this is really challenging often for clinicians to navigate. And in the international survey we did again and again comes up is really, really challenging.

And then of course language. So not speaking English. Not having adequate translation. Or the translation doesn't really capture maybe nuances of what a provider intends.

In terms of poverty and vulnerable communities. This is more looking at those structural and socioeconomic issues. Competing responsibilities. Which I've already mentioned. Structural barriers. So just instability. Financial instability. Really leading to instability that also plays out across engagement with providers or teams, background, stress, having to deal with violence.

I've kind of interviewed or in this survey, providers volunteered information that for somebody who may be experiencing huge upheavals of one kind or another. And that could be they just integrated or had to seek asylum or have come to the U.S. as refugees. And their whole entire hometown is collapsing or has been turned into a military zone. Psychosis in their child may actually not seem like front and center in terms of what they are experiencing. So just the perspective is not always the same and we often make assumptions that don't necessarily map onto everybody's experiences and realities.

Okay.

And I'm looking at the time. I want to just wrap up. And so I'm going to skip over some of this. I think that we do need to be -- there's a culture especially in light of just huge political upheavals over the last couple of weeks. Really need to be having much deeper conversations involving a lot more people about these issues. So I don't mean to downplay them in any way. But I do want to just leave you with a couple of resources. The NAMI STAR Center created this -- the NAMI STAR Center helped fund this in addition actually with some funding for a piece of this project that came from NASMHPD that Oscar Solomon led really diving into what it is that matters to racially diverse use in the context of Coordinated Specialty Care specifically. And there's a host of resources. They created guidance for clinicians that is more like the NASMHPD products. There's a whole set of videos. And then leaflets and pamphlets that are available in different places. All the links are here.

The videos I just want to briefly say are incredibly powerful. They are very -- they are very provocative. These are not -- as a former colleague of mine once said, you know, the video where you imagine that somebody is holding a gun to the young person's head and they just have to make it sound like Coordinated Specialty Care is the best thing that ever happened. These are just really, really rich -- (audio cutting in and out) peoples' experiences as culture, race and early psychosis intersect. What I would suggest is they are really powerful conversation starters. These would work for a clinical team to watch some of these and really dive into the issues. They would work for a family psychoeducation or family group night where maybe there is a perceived need to be paying more attention and talking more about cultural and racial issues. So I really, really encourage you guys to check out this project. And then I just want to mention structural competency as a relatively new competency area that really tries to go beyond thinking about either race or socioeconomics. It's an intersectional framework. It's really looking at underlying structures and how they start to shape everything including clinical interactions as well as the services that folks receive. Just encourage you if you're interested in these issues to engage with some of the material and resources available. And now I'm going to turn it over to Donna.

>> DONNA FAGAN: Okay. There we go.

(Echo).

>> DONNA FAGAN: I have terrible feedback on my side.

Okay. I'm Donna Fagan and I live and work in Texas. I'm a Certified Family Partner. And currently I'm working in a Coordinated Specialty Care team in Texas. I've been doing children's mental health for about six years. And I have the lived experience of having children with a mental health condition. I also have experience with my own family in my immediate family and extended family of individuals that have had diagnosis which include psychosis.

So I feel very impassioned about the role that I'm working in right now. And I really hope to be able to give you some information that you can take away today and really feel like you've learned something about Family Partner work and the importance of it in specialty care.

So I'm going to just give you an overview. I'll begin by giving you a short overview of CFP services in Texas.

What is lived experience? The structure of CFP teams and I'll define Family Partner services and lived experience. Review family involvement in Texas and how we got to where we are today, providing services to families. I'll talk briefly about system of care values and why we want to partner with families.

Certified Family Partner roles in community mental health.

Review state supported CFP services. And cover the importance of transition age youth programs which I'm going to do a spinoff of transition age youth programs into Coordinated Specialty Care. So we'll talk a little bit about that. And then some of our state's utilization management guidelines. Then I'm going to talk more specifically about Coordinated Specialty Care. Our utilization of OnTrackNY material. The structure of our teams and how we are moving forward with those teams. And the successes that we're having with them.

So with lived experience, lived experience, it's another form of expertise. And so what we say sometimes is a parent is the expert of their child. So they are the expert in what they feel like their child needs from a treatment standpoint, from a cultural standpoint. I may not have a PhD. But I have a PhD in my child. And because of the trials and difficulties that we've been in and the systems that we've had to navigate, most Family Partners might say that we have paid more for our mental health education than most of the people that we work with. So lived experience has value.

And within community specialty care, we're professional members of a treatment team. So we do have to have that balance of being that professional member but also utilizing our lived experience to help individuals.

And I apologize if I'm a little slow changing slides.

So as part of that overview and I'll talk -- I'll do this slide and then move on. Family Partners in Coordinated Specialty Care in Texas. So we have a team lead, a primary clinician. Supported education employment specialist. A prescriber. Certified Family Partner. That's myself. Mental health Peer Specialist. And then I also do community education and outreach.

Because we are a community mental health organization, we do have access to co-occurring psychiatric substance use disorder and said programs within our agency and then you'll see the link on the bottom of the page there. I'll have several references to HHS Texas and some other documents about UM guidelines kind of as we go forward there.

And so a Family Partner the difference, talking about what is a Family Partner what is a Certified Family Partner. So a Family Partner has real life experience parenting a child with mental, emotional, behavioral health concerns. And who can articulate the understanding of their real life experiences with another parent or family member. So Certified Family Partner is that same person but they have been through a training and certification process that we have available here in Texas.

And so then family involvement in Texas. We're very proud of what we've been able to do here in Texas with family involvement like many states and areas in the United States, a family peer support and system of care language began to move forward in the 1980s. So we carry the same motto here that most people have. And that's Nothing About Us Without Us.

System of care values do include that family voice and involvement. And so as we move forward here in Texas, we saw our first families working within our communities in the 1980s, going into the 2000s. And there were system of care grants. Training and workforce development began certification for our Family Partner roles here in the state.

And then our states mandated that Local Mental Health Authorities LMHAs employ Family Partners within their agencies.

So we've had certification trainings. We've developed endorsement trainings. We've continued to receive system of care planning grants. And we moved those forward in our state.

We have wraparound endorsement, juvenile justice endorsement. We have a program called YES waiver which utilizes wraparound so we have done a lot of work in our state to be able to provide family support within community mental health.

And so with system of care values and partnering with families, I have on here that importance is placed on partnering and the level of power and the leveling of power differences. Healing happens in relationships and in the meaningful sharing of power and decision making.

And so that's really very important. So why should we partner with families? So partnering goes hand in hand with including family voice and person-centered recovery planning. We want to be culturally aware and sensitive by providing family support.

And healing happens in relationships. And in that power and decision making, we want to look at within cultural humility the power imbalance.

And so a way that we can start to address some of that power imbalance is to always have families at the table. But not just have families at the table. We want to have them in all areas of decision making. But we want to be able to provide that one-on-one family peer support that is so needed for the family for a family that has a child, adolescent or a young adult with a mental health or substance use disorder.

So then -- and then talking about the value of lived experience, so our lived experience parenting a child or young adult with a mental health or emotional behavioral concern, that's our primary tool. That's the tool we use when working with families. A family's lived experience is critical to engaging the family and in establishing a trusted relationship that's valued. So people are frequently asking, how do we engage families? One way to engage families is to have a family peer support provider or Family Partner on your team to where that person can go in and do that one-on-one support with that family. There's nothing that is more important to a family than being able to have that other person that has lived that, walked the walk. And understands what they are going through.

And that really does bridge a lot of situations.

So I think that when we're talking about the lived experience and how it's critical to engaging family, I think about culture.

What is culture? I live in a rural community. So that would be culture. I'm from the south. That might be culture.

I have children in sports. I have college-age kids, I have grandchildren. All of these things fit into all of those different cultures. So I think that culture equals peers and if we can't be culturally competent what we want to do is being culturally competent by having cultural humility and cultural sensitivity and within community mental health and children's mental health programs and adult programs Coordinated Specialty Care, we want to employ all of those thought processes about competence, humility and sensitivity and be able to have that peer on the team that is going to be able to provide that peer support to the family that we're working with.

And then a little bit more about Family Partners. So in community mental health, we are formal members of the recovery team. We're considered mental health professionals. Some of the things that we bring to the team as professionals is that continuity of care. We do perform some evidence-based practices. I'm using examples of like motivational interviewing.

We have some other -- in children's mental health programs or non-clinical skills trainings that we do with families. For instance the nurturing parenting program. And we supervise, train and mentor other Family Partners.

And so within Texas, HHS state supported services, Family Partner services I think generally across the country are similar. So we share our personal stories when appropriate. We ensure confidentiality. I attend prescriber appointments with my families. I've sat in hundreds of prescriber appointments. Psychiatric appointments with families and their children.

We role model self-care and parenting and advocacy.

We provide emotional support. That's probably 50% of what we do. Is we just listen. We help with systems navigation. Because many of us have navigated multiple systems. I say frequently about myself, there's probably not a system that I have not personally navigated. And the one or two that I haven't personally navigated, I'm sure that I have done that with families.

And so within Texas, those services are provided as Certified Family Partner services. However, they are not being paid by -- they are not being reimbursed by Medicaid or other insurances.

So the cost of providing those services is currently being absorbed within the Local Mental Health Authorities. However, we do have some services that are reimburseable. And that are -- that's our non-clinical skills training. We can medication train and YES waiver wraparound services a very specific program YES waiver empowerment services, our services, family support services in that role are reimburseable.

And then just real quick, the reason I'm talking about wraparound is because I want to bring that up a little bit later in the conversation. And just kind of help you maybe spur some thought, help you think outside the box a little bit in regards to Coordinated Specialty Care. But within wraparound services Family Partners provide exactly the same services and state supported services as we do in wraparound services as we do in transition age youth services, et cetera.

So some of the things that we do, again on this slide, we use our lived experience. We provide hope and peer support. We ensure that parents have a voice in the process. Or family members have a voice in the process.

So we engage people from diverse backgrounds. And we're able to maintain non-judgmental attitudes towards families and other professionals that we're working with.

And I just want to make a personal note here about this. I know that there's a lot going on in the world right now today. But within the line of work that I'm doing, when I walk into the home of somebody that has a child with a mental health condition, that is the only thing that matters. Race does not play a role. Gender does not play a role.

I am a parent with a child with a severe mental health condition. And I am supporting another parent with a child with a mental health condition. And that's huge.

It's huge. Because one thing that we all do have in common is that we all love our children.

And then moving on here, so minimum qualifications for Family Partners. Family Partner pursuing certification or Certified Family Partner, we can provide Family Partner supports. Family training. And we can do parent support groups.

Certified Family Partners, once they have gone through training can do medication training or skills, non-clinical skills training. Family training.

And then again, with a I'm wanting -- what I'm hoping that you'll see is that Coordinated Specialty Care is a program that is providing services to that group of individuals that we might call transition aged.

So within community mental health, we're providing before community -- before Coordinated Specialty Care came along, we were providing services to transition age individuals through YES waiver up to their 19th birthday. We have a level of care called LOC TAY, TAY for transition age youth. What we consider transition age in Texas is 16 to 25.

Within a Coordinated Specialty Care we serve 15 to 30.

And then Family Partner support providers in Coordinated Specialty Cares are providing first episode psychosis family contact supports and engagement.

And then talking a little bit more about that transition age youth.

And I really am wanting to tie that into Coordinated Specialty Care. Because many people don't understand why kids fall off the planet, why they turn 18 years old and they are no longer engaging in services and the families have not -- are no longer included in services. And sometimes there's a lot of very difficult interpersonal relationships that have happened between the family and the individual with the mental health condition. That's created a lot of very upset family members and disconnected family members. So what we say here in Texas in regards to transition age youth is what we want to see is that warm hand-off. So without the warm hand-off and that would be individuals transitioning out of children adolescent services to adult services, without that warm hand-off and this is happening during that age of self-determination where we are all supporting that young adult in their decision making. We're helping them understand that they have the -- they have a right to their treatment or right to their thought process. We definitely want to support that but when we get into Coordinated Specialty Care, what we find is families are not engaged and if we were to be able to employ more of a warm hand-off where we can continue to support those families and provide support to them, then maybe there would be more of a continuity of care and a way to continue to engage those families. And this is where Family Partners come into the picture. Because we can help those families understand that age of self-determination. We can help them understand what is happening within community mental health when they no longer have access to their child's records, et cetera.

So parents of families need that warm hand-off and they need that Family Partner support in doing that. Also what we see when we don't have transition age youth programs is many times individuals turning 18 years old, they do just fall off the planet. They fall out of services. And I would like to see the community more support the family as we're walking through that transition. So that those young adults don't just fall away from services. Then what I like to say to parents is why is it so hard to let go it's because you're only as well as your least well child. I mean you have fought for that child. You have done for years everything to try to help your child be as well as they can be. Especially for children that have serious emotional disturbance and now all of a sudden they are 18 and you can no longer help them? So I think wraparound services are a wonderful way of continuing that transition. So within wraparound services, and I'm not using the words wraparound very lightly. Because in Texas we don't use it as kind of a catchall phrase to describe when two or three people come together. Wraparound service in Texas really, truly is wraparound but the NWIC (phonetic) model so wraparound services would include transitioning that young adult into adult services. And you would have the Family Partner on the team. And you would have the adult peer support provider or your youth peer provider on the team. And then we would do that hand-off into adult services. Then I put on there the caregiver buy-in. It's really, really hard for families to trust their child to systems that have failed them. And the majority of systems out there, maybe not one, maybe not two, but somewhere along the way we have had a system that's failed our child.

And so that Mama Bear in us, you know we stand up.

And we are going to fight for what our child needs. And that's very hard when that 18th birthday comes along and the -- birthday comes along and that door is closed and you are told you can no longer participate in your child's care.

And then, when they develop psychosis and now our program is saying, we really want you to be involved because we recognize you as a natural support so let's work at trying to bridge that gap and keep those kids from falling out of services or falling deeper into emotional difficulties.

And then just some fast facts about CSC in Texas. There's 3,000 now FEP -- first episode psychosis cases in Texas each year. In 2018, we had 10 programs out of our 39 LMHAs. And then in 2019 Coordinated Specialty Care we added 13 more additional sites. And we are serving individuals from the ages of 15 to 30 years old.

And then talking just a little bit about Texas resistance and recovery, utilization management guidelines our UM guidelines, within those UM guidelines that's our HHS UM guidelines. So this is written into our UM guidelines in regards to peer support. Peer support within Coordinated Specialty Care. Again looking at the shared lived experience, modeling hope and resiliency. Connecting the family is what we're trying to do as Family Partners. Educating about resources within the community.

And then also we can do medication training and support. We do engagement interventions. It's like how do we engage the family? Well, call the Family Partner if they are not engaging and let the Family Partner go out and share some of their stories with lived experience with the parents and help them feel comfortable with the program and help them understand a little bit about what their adolescent is going through.

So then Certified Peer Specialists or Certified Family Partners may serve as a member of the treatment team offering feedback to other providers regarding their observations.

So we are a full member of the treatment team. We do our weekly staffings with our team. These services for instance like medication training, this is all dependent upon capacity that the agency has to be able to provide those services to individuals.

And then the core services, again are Family Partner services. Individual family training. Group family training. Parent support group. And medication training. And again that's dependent upon the staffing and at the discretion of the Local Mental Health Authority.

So within OnTrackNY as we began to implement this program in our agency, we began to ask what our families -- what is the role of the Family Partner? So because we are so integrated in mental health and we already have -- we're established within the treatment teams and other programs and areas, so we know that we're going to use our core competencies. The things that we do is provide that emotional support to the family.

Help them understand their loved one's mental health condition. Talk to them. And teach them skills around communication, which is really big.

I use the OnTrackNY manual, the family resources manual, that has the material in it for -- I use it either as an individual or in group. But that's that non-clinical skills training. So that coaching or psychoeducation to the family.

And then just to help people understand the case for Family Partners providing psychoeducation within Coordinated Specialty Care. Because when I began looking for material for Family Partners or family peer support across the state, I couldn't find anything.

But within community mental health, we're already providing some non-clinical skills training. We do nurturing parenting program. We can provide non-clinical skills training to families with Barkley's defiant child, Barkley's defiant teen. And I want to also make a point that NAMI Family to Family is a psychoeducation class and it's a psychoeducation class that's taught by peers and individuals with lived experience -- with a loved one that has a mental health condition. I'm sorry.

And so the majority of those people are not degreed individuals. So that's also a form of psychoeducation.

And then what we're doing with the OnTrackNY material is that we're utilizing the family resources manual. And we are providing the -- it's under the monthly family meeting section. And the first one is, what is psychosis? And it has about 15 -- I'm doing those individually within the homes with families. And then we have -- we were moving towards doing that within group. And then we have our community public health crisis right now. So we have not been able to move forward with that. But that will help you with the understanding of how Family Partners are providing or can provide psychoeducation.

Then I just want to make a comparison here and I'll flip from this slide to the next slide. And they are basically about the same but in Coordinated Specialty Care, psychoeducation, we're doing exactly the same work, providing psychoeducation OnTrackNY as we do in providing those other non-clinical skills trainings. So these are some of the things that are happening. We're helping families identify strengths and needs. And we're helping them understand the -- their loved ones psychosis. We're helping them with communication skills. We really focus on self-care. And problem solving. And continuing to identify other natural supports that might be available for the family or for the individual. So then this is the same within state-supported services with the other non-clinical skills trainings we're doing, we're doing exactly the same thing for families within those programs, as well.

So then I just want to take a minute and just spur your imagination and talk about wraparound. So I've worked within wraparound for several years. I worked with intensive level families. And I'm a real believer in wraparound services. And what I see within community mental health is we have a wraparound for YES waiver, youth empowerment services for intensive level needs adolescents. If they go into Coordinated Specialty Care, then they are getting the team. But they are not getting the full benefit of wraparound services.

And why this feels important to me is because I've worked in it for so long and I see the value in it for families that have other family members that want to be involved. For families who have children. That are living in a home with somebody with a significant mental health problem. And within wraparound, we do help each person identify their strengths and identify their needs and their goals and make a strategy of how they are going to accomplish each one of those things.

So that's not, as far as I know, currently available in Coordinated Specialty Care. But we do have it in other areas. And I think that it would be appropriate to be able to offer that in Coordinated Specialty Care so we don't feel like we're -- we have a very good program within wraparound services and I shouldn't have to feel like a family is doing without something just for them to get something else. So I'm an advocate for wraparound services there. And I have a link there on the bottom NWI link there they have a publication wraparound for older youth.

And then we're kind of back where we began. And that's where we're talking about a Family Partner's lived experience. So our lived experience is our primary tool. And even though within community mental health we're representing ourselves as a mental health professional. We have, first and foremost, a person with a lived experience caring for a child or a young adult with a mental health condition.

And our experience is critical to engaging the family.

And so that's where I'll leave it. We have a list of resources on the Texas Family Voice Network webpage, txfvn. Some of the links and resources about Coordinated Specialty Care in Texas can be accessed through the .

>> DR. LYNDA GARGAN: Thanks Donna so much for that presentation. And really highlighting the value of our family peers. And Nev, thank you so much for the incredible information that you shared about CSC and the data. If it was possible to do a standing ovation, I think you would have everyone on their feet right now.

We have just a moment. So let us try to answer a question or two.

Nev, we have a question, could you explain the meaning of psychosis in terms of family support to individuals? Nev, you may be muted.

All right. We'll try to get Nev back online here. Let me go to the next question. Donna, if you could give us some thoughts on this.

How do you offer support to trusted adults when the and client in parentheses chooses not to get services? Basically the caregiver support services depend on the youth or young adult as the billable client.

So Donna, have you had any experience in working with family members, those trusted adults, when a young person chooses not to be in services?

>> DONNA FAGAN: Yes, absolutely I have. And what I would say about that is that we are always cognizant of privacy issues. I can go out into the community and provide the psychoeducation that I was talking about. I can engage the family in talking about self-care and identifying ways that they can, you know, apply self-care in their life.

We all need that when we're living in the home with someone with a significant mental health condition. And I think sometimes when our loved one that's experiencing a problem sees a change in us, then it might benefit them towards moving towards care.

>> DR. LYNDA GARGAN: Great. And folks, I hate to do this because we do have other questions in the queue. Please know that these questions will be emailed to our presenters and they will answer those for you. Kelle, I will turn this back over to you.

>> KELLE MASTEN: Thank you, Lynda. And I would like to thank Nev and Donna for presenting today. For those who have asked, the webinar was recorded. And the recording will link along with the PowerPoint presentation will be sent to you via email within a few days.

Again, I would like to take this time to thank SAMHSA for allowing us to share this information with you today. And thank you for joining us. I am going to switch the screen now to a short evaluation. And ask that you take a few moments to fill this out for you. Please know that you do not have to click on anything to submit your answers. Your responses automatically populate when you respond.

Again, thank you for joining us this afternoon. And enjoy the rest of your day.

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