Transcript for April 14, 2017

>> Hey, hello everybody. We have some people in the room, and I think we have a couple of people online. We have, who's online with us. We've got a few people?

>> Yeah, but long-distance and a couple of alumni.

>> Oh great, great.

>> Yeah.

>> Well thank you all for being here. We're kind of excited to talk about this project, even though we finished it a while ago. We did this project 2008, 2012, where we worked with Camp Pendleton really looking at how we might interface with services that were available to military families and try to find out how we could best support those services and maybe look at enhancing those, making sure that people could connect with community resources. And we did this in response to an RSP, a request for proposal, that came out asking about doing partnerships with military families, that there weren't, while there are a lot of resources for military families, they're not necessarily specific to families who had children with developmental disabilities. And so that was really the focus. And we sort of embarked on this adventure. A number of the people involved had had some connection with the military. But it's very different when you're not part of it, not part of the military. So we started to look at how we built those relationships. And I'm not going to read the abstract, because I don't like it when people read slides, so you can read the slides. We will talk more about what we did and how we got it set up. So we'll give you some background. And I do want to include Sherry Torok, who is the executive director of the Exceptional Family Resource Center, which is also a part of Interwork. And luckily, she's here as well because Sherry and I start this by going and meeting with people originally. So we'll get back to that in a minute, [inaudible] background.

>> You know, we talked a few months ago about, you know, we should do something with this project. We should talk about it. So we had the opportunity to do that in a special issue of Internal Rehabilitation talking about multicultural aspects of family caregiving. So we're really talking about this from a military-specific point of view where there really is a lack of focus on this in a rehabilitation counseling profession. So we start, you know, let's do this. Let's also send this to NCRE where we're going to be presenting this presentation next week. I think, you know, again, to really put more of a focus on the needs of veterans and military, which in rehabilitation counseling, I think, we're really kind of behind, you know, the eight-ball in a sense, we really haven't gone to enough focus on this area. So we're hoping that this presentation is, this paper in terms of reporting the results of this project, is a step to really advancing more of that focus on the needs of military families.

>> And the article was accepted in the journal. So that will be coming out. Their special issue will come out what?

>> I was hoping by the end of 2017.

>> Okay, great. Good.

>> Alright, when we think about this issue about family targeting and the focus of Project Pendleton, focus on families of children, and it could have been adults as well with development disabilities, but our project ended up focusing primarily on children, caring for children with developmental disabilities. And among that, primarily autism. And so we see that this really reflects a very common type of disability in the United States. It's estimated that around one in six children in the US has some formative development or disability, which the autism is probably the fastest growing population in that number. So the CDC estimates we have around 1 in 68 children who are born today will eventually be diagnosed with some form of autism spectrum disorder. And part of the issue here in terms of looking at this from a public health and economic point of view is that, you know, while we have millions of dollars devoted to provide support to families and to individuals with developmental disabilities in the United States, you know, the reality is that family really provide most of the care. You know, if you try to really quantify economically how much caregiving is provided by families, it would be easily in the billions of dollars. And it would be to a point where if families weren't providing this care, it would probably bankrupt the United States in terms of trying to meet all these needs. So families are providing the incredible array of services. The other thing I think is relative to Project Pendleton is that there is a number of studies over the last 30 to 40 years that have demonstrated the impact of professional support for family caregivers. You know, one of the overall conclusions you can make and, not surprisingly, if you have access to adequate public supports, family support programs, funding, all those kinds of things that we know help families, if we look at things like caregiver depression, anxiety, physical health outcomes, these are commonly looked at types of outcomes, we know that it makes a tremendous difference. And when they don't have that, not surprisingly, we see a lot of negative outcomes for family caregivers. So one of the issues that we were looking at Project Pendleton is look at access to services as one of the key types of factors here. Just to kind of talk about a little bit of the background. I want to point out of some of the things that military families are dealing with. Some of this is probably not a surprise. Most of it is probably not a surprise to you. [Inaudible] that regular families deal, non-military families, deal with and in addition to that, additional stresses that come along with being a part of the service such as things like being deployed, things like every few years isn't uncommon. They're deployed, and they're a long way away from having normal, natural support that they might have, family members, those social connections with folks that they've grown up with, so those folks are also connected there. They have the, usually there's

[ Inaudible ]

On fairly limited income. They haven't gotten their chain of command that to be sort of respected inside the military [inaudible] outside. And they're frequently on deployment, military family becomes sort of the, back to only one parent family, one of the parent's kind of gone out of contact. And then just another key for this is kind of a from a lack of research on military families, you know, just kind of a closed system, a little bit reluctance to kind of let outsiders come in and took a look under the hood. So there's not a lot of research that's gone on around military families.

>> So, our main [inaudible] of the RSP and sharing our talk and saying wow, this look likes something that's really designed for us working together. Us meaning university, as far as Interwork Institute, the faculty and the EFRC, the Exceptional Family Resource Center that is all about family, for those of you who aren't familiar with it, for those who might be out of town. EFRC has been around for over 25 years. Families, parents supporting parents. Parent professional partnerships. And really trying to make sure that families have the information and the access to resources that they need to support their kids and adult kids with disabilities. And so it's always been, it's a very family-focused system, that we all deal with our system, right. And so when we looked at this idea of working on this project, we thought, well this will be great because we can build that into it. We really wanted to be family-centered. We wanted the services to be designed to be person-centered and person-driven. The planning would be done in that way. But we also knew that we were walking into a system that has a lot of bureaucracy in the military and that we wouldn't necessarily even know sometimes the questions to ask and what some of those protocols were. And that was something that we tried to get from other people who could give us that information. So that we would approach it in a very respectful manner and not be seen as trying to barge through in different ways that might not be seen as acceptable. So that was our purpose was to be able to focus on what the family needs, not to go in and say oh, this is what we think you need. But really, what is it that you need and how can we work together to make sure that you have the access.

>> In the context of for the funding of Project Pendleton and just, you know, what Karen just said about having a family-focus approach to services. A lot of this is really kind of driven by the Developmental Disabilities Assistance and the Bill of Rights Act of 2000. So I think for everyone in the room and everyone online, the kind of things we have here makes sense. It's not, you know, things like people with developmental disabilities are capable of achieving independence, productivity, integration and inclusion. We have competencies, capabilities, and personal goals, those are the primary decision-makers in all the family. Again, for all of us that think, you know, it actually seems second nature. But unfortunately for a lot of the systems, the [inaudible] centered approaches that we often are faced with, as well as just the general public, you know, many people may not subscribe to that set of beliefs. So projects like Project Pendleton and the overall military 360 programs are really guided by this fact, to really advance this set of principles, to [inaudible] this type of philosophy. And, you know, with the act it provided a funding mechanism for a project like this to exist as well as projects in different parts of the United States.

>> So the funding, just a couple of the details, the funding actually came out of the US Department of Health and Human Services from the Administration on Intellectual and Developmental Disabilities. And the whole process was called, or the funding stream, I guess, was the Family Support 360 for Military Families. And so we were funded, they funded a couple of rounds of this, and we were in on the first round. And the first round only funded, Sherry, was it three projects across the country, I think the first year that we were funded. Yeah. And so we had $200,000 a year, and it was supposed to be for five years. As it turned out, they discontinued the funding, and so we ended up with four years that there were several other projects that only got a year or two. So we were actually pretty fortunate that it was an odd thing. We were, pretty much out of the blue, and it wasn't that they stopped funding us. They stopped funding the entire effort. And we weren't really given a lot of explanation, just like none. But they just said, you know, we're done. And we'll get into that a little later I think, kind of what we found out after the fact. And so much of that, I think, can be attributed to our large bureaucracies and, you know, one hand not necessarily knowing what the other hand was doing. So I'll talk a little bit more about that when we get into the start of the project. Mark.

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>> Oh. I'm sorry. Just kind of more background on the Marines, the missionary force, they kind of go in first a lot of times. I was surprised to kind of find out that the smallest branch, you know, of Army, Navy, Air Force, Marines, we see them a lot because we have Camp Pendleton here. But I, they're smaller than the other branches. Also tend to be younger than the other branches. And the average age of a Marine Corps spouse is approximately 29 years old. Which, if you start looking at what the average age of marriage is, you know, among adults in the US, it's pretty close to that. So that's the average age for somebody, you know, so that's a young group adults. And so the project, you know, the name Project Pendleton, not surprisingly because of Camp Pendleton. So try to be kind of catchy with our title. So Camp Pendleton is in an enormously large base. We put on here it's equal to Rhode Island. And when you go on the base it's like you can just drive for hours and hours. So it's a self-contained community. It's kind of like its own like state in a sense. It has its own sewage, water, telephone, electrical systems.

And it's the largest training facility on the West Coast for the Marine Corps. And it's also San Diego County's largest employer. So you know, this is very much a military town. We have a couple people online who are not, you know, based here in San Diego, but when you come to San Diego, you see references to the Marine Corps, you know, everywhere. Especially if you go to Oceanside, which is the city closest to Camp Pendleton. So it's very much, you know, interwoven into the local community. And it's part of its history. It's part of its culture. Again, back to that idea of looking at this from a cultural point of view. And many families are based at Camp Pendleton, so more than 38,000 military family members live in over 7,000 housing units. So again, it's like its own city, its own major, you know, kind of mid-size town. So an incredibly big space to work in. And when we talk about the structure of Camp Pendleton, and Sherry saw this first-hand, but we had to look at a number of creative approaches to try to meet this large geographical area with a fairly limited size of staff.

>> And if it weren't for Camp Pendleton, we would be merged with Orange County in LA. We really are thankful for Camp Pendleton.

>> Yeah, we have some good stuff out there [inaudible]. So this is where I think, just kind of explaining the professional family member programs probably kind of important because we also have EFRC and then the EFMP, and we're trying to keep those things like separate [inaudible], or I was, being kind of the old [inaudible]. So the EFMT is a Department of Defense, they established that, and that is an entity that looks after, helps to kind of meet the needs of [inaudible] of military families. Folks who have a disability, the dependent or.

>> So there's [inaudible] themselves, is it? The disability can be [inaudible].

>> I don't know. That, I don't know the answer to that, but it was established by the Department of Defense in '87. And then the Marine Corps version of that then kind of got up and running in 1990. And so I think probably throughout the rest of our conversation you'll probably hear about efforts to kind of bring together what the EFMP and the, you know, the Project Pendleton and the EFRC were doing and not stepping on each other's toes and that kind of thing.

>> So in terms of demographics, it fits in with the population of Project Pendleton. Most of the care recipients for the EFMP at Camp Pendleton are children and around 71%, 29% spouses, so those are really the two major groups. You know, the family member groups that are served by EFMP. And I think also consists in a way that amount of children received that the largest group, 1,453 are those ages zero to 18 years. And so when you look at the overall, bill for all the like composition of those who are dependents at Camp Pendleton, a pretty big percentage, 6%, are served by the EFMP. So they have a major role, major presence, on the Camp Pendleton base. And one of the things we'll talk about in the few minutes is just the importance of the collaboration with EFMP. I mean basically, you know, the project, when it happens, the hospital will go out there [inaudible] without their participation. But kind of to this idea of understanding military culture. It'll take a while to really establish these relationships to work effectively with the program. And this was on top of the fact that the Exceptional Family Resource Center had previous relationships with EFMP, but still to get this project off the ground, took a lot of work to really establish that relationship. And then in terms of, if we look at all the Marine Corps EFMPs across these, or all the different bases around the globe, you know, it's again consistent with Project Pendleton, we see that the fourth largest group are those with autism or pervasive development for disabilities. Again, it just reflects, you know, our project really reflected the overall population we saw in the Marine Corps with this [inaudible].

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>> You want to hypothesize why [inaudible] number two? Remember.

>> I know we weren't surprised at that, because they talked a lot about kids with asthma.

>> I'd say probably the EFMP people, their thought was, and I don't know Sherry if you remember this or not, but there's folks that would bring up asthma because you got to tell with asthma you could get an air conditioner. So that was sort of the [inaudible] a more hospitable living environment on base.

>> Interesting.

>> Yeah.

>> I have a question. When you look at the number one [inaudible], does that include the other types of illnesses like psychiatric illnesses or is it strictly developmental-type, in terms of their [inaudible]?

>> Yeah. I'm not sure. I'd have to look back to all those groups to be able to put a laundry list of all the categories. These are the ones that really kind of jump out. I think it's from some things like mental illness, psychiatric disabilities, I believe it's a separate category. But I'll double-check on that.

>> [Inaudible]. So when we got this set up and I'll never forget, Sherry and I went up to meet with the woman who was the head of the EFMT. And she was the EFMT. There was one person. And we were really surprised at that that there was one person running this. And she was doing everything. And we went up to meet with her and talked about what the RSP wanted and what we thought we might have to offer. And, you know, what were they doing. And, you know, just to kind of get to know each other. And she was very interested and thought this sounded like a great idea. Also knew that it would need to have a, you know, the authorization and approval from about 17 different layers above that. And so, but she really was willing to help us with that. We also had a staff member at that time here at Interwork who was a Marine, who had been a career Marine. Who was really helping us with trying to understand the protocol and how to understand how we get these things done. Because we had to have the signature of the based manager, and then things started changing. And so personnel change. And this is part of the military is things change a lot. People change. People go in and out, and people in authority, people in administrative positions, move in and out. And we were dealing with people out at 29 Palms and at Camp Pendleton. And we started to get this feel of the size and scope of what we were really walking into, because I think we were, I know at least I can speak for myself. I was a bit naïve as to how to access this world.

And so like I said, our people that we knew that has an experience were really helpful. And we got everything we needed at the 11th hour. I remember I was someplace else. I was at a conference, and we had to get it in, and we were waiting for that final signature. And it literally came in at the 11th and a half hour. But we got it in, and we got funded. But interestingly, by the time we got funded, which is typically six to eight months after you put in a proposal, everybody had changed. In fact, the woman who had been the only EFMP person was gone, and now there was a team of about six people who were running the office. And of course, they really didn't know anything about this because they weren't there. And the people who had approved it didn't really tell other people that it had been approved. Because there's such, you know, such a time lag. And so we're, of course, assuming that everybody knows what's going on, and we get there and find out nobody knows what's going on. And so it took a while. It took a while to kind of get to know people. And one of our head people, I guess we talk about the structure a little bit later, but you know, working together with Sherry and her team, luckily one of our lead people, Susan Carlton [inaudible] was phenomenal. She was just really instrumental in being there and being kind of the face of the project more than anybody. And just started making those relationships. Building rapport. Building trust.

But we called on every resource that we could. And EFRC has, is part of many networks in San Diego County, Imperial County, California, and nationally. So we called on everybody that we could. And the project itself offered some support, some technical assistance, from some military families who offered support to all the different projects. And we would have phone calls with them, and they actually, they came out and met with us. We had several meetings at Camp Pendleton, to kind of get people on board just so that we all knew what each other were talking about. And that it wasn't this idea, we're coming in to fix you, because that's often how things are seen, whether it's military or not. That's often how projects are seen. Oh, you're going to come in, and you're going to do stuff, and then you're going to leave. And so the good thing about the fact that we were able to build on some relationships that, you know, EFRC had with the base, but again, not everybody knows every, all those connections. So it's really kind of, it's a jigsaw puzzle to put together and having some missing pieces along the way. But EFRC being part of the Family Empowerment Center, the Early Start Agencies, California Family Resources, the policymaking group in California, being able to coordinate with STOMP, which is another, they do training with military families. And so having all of those pieces behind us helped. And just learning the physical layout. I remember when we went on the tour, which took half the day to drive around the whole base. I mean it's phenomenal, you know, when you talk about a whole state, it really is. And I can remember when we were on the phone with, they had a project in Guam, I mean it's bigger than Guam I think. The whole base is definitely bigger than the whole country. So, you know, when we're hearing about things from other projects, it was really interesting to kind of think oh, well, that's really different here. So there weren't a lot of comparisons in some of the different projects.

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And you learn how to refer to things too because the language is very specific, even to where we talked about [inaudible] and how, you know, making sure you say it the right way. Words have to be.

[ Inaudible ]

Yes. Everything is.

>> Protocol-rich.

>> Yes.

>> Protocol rich.

>> A little bit more about just how the whole thing was set up. We did have an advisory committee, and some of the organizations that were listed on the previous slides that Karen was talking about were on that advisory committee. We would check in with them quarterly, and then they also were part of, we'll talk about how the project was evaluated a little bit later. But we actually, they gave us advice. We also extracted, you know, information from them that kind of informed the way that we structured the program heading forward. So and they were pretty instrumental to us. And we had, like anything else we had changes on the advisory committee over the four years of the program operated. Just to kind of a detail about the way the program operated, part of the project goals were to kind of work more intensively with five families. It wasn't like the project, we work with five families a year. But those were the ones we worked with kind of most intensively to kind of serve as mentors for other families. So in addition to program staff who can provide support to families, these are families who were kind of prepared to help provide support to families as well. And that factors into kind of sustainability which becomes kind of an important thing when you hear oh, program funding was yanked away after the fourth year, and you know, there was kind of a void there. And then outreach brought along a number of efforts, including things like developing a website, which is pretty interesting to look at, you know, to track like who's accessing the website, where it's coming from, all over the place internationally. In addition, you know, Margo and Susan did a lot of information fairs and stuff like that and kind of keeping track of all the people they contacted over the life of the project, over those four years, and managed to kind of touch base with about 10,000 people. And those were pretty good contacts. We tracked them more intensive interactive with folks in a different way. But that's a lot of [inaudible] over the four years.

>> [Inaudible], this was a real partnership and unity in how we were implementing this. And it took everybody because everybody brought something different to the table. So, you know, having folks from our rehab counseling program. I served as the PI. Chuck was the co-director with Sherry from the FRC. Mark was the lead on the evaluation. And then Susan and Margo, who were our kind of the boots on the ground, as they say.

>> The four years they were deployed.

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>> Right, right. And, you know, the people that we met though, it was, at different times there were different people who were in the lead on the EFMT. And some of them were just so amazing, so dynamic and really wanted this to work. One of the things that was really telling is they kept telling us that we would have a space on base. And we just needed a little corner to put materials and be able to keep some things. They kept saying, oh yeah, we're going to have some space for you. We're going to have some space for you. And every time it'd be like oh, well there's no space. But we're going to get some space for you. And it just went on and on and on. And finally, you know, I think Sherry was the one that, let's just rent some space someplace else. So we worked with the foundation, and they helped us find a little office space right outside the front gate. And so we got the space, got it all fixed up really nicely, and the families were thrilled. Oh we love being able to leave the base and go here, because it kind of frees us. You know, we don't feel like we have to watch what we see. We don't have to look over our shoulders. You know, we can really relax. Why didn't you just tell us that. I mean we've been going through it. We wanted to make it so convenient for them, and here we had all these great intentions, but nobody was talking about it, you know. And so they loved coming to this space. It was a really nice little space.

There was space for kids to play so that parents could come to groups. And we had the mom's group and the dad's group and siblings group. And so it was really, it was a great little spot. And had we known, we could have done that earlier. But it did, it's one of those things that people don't necessarily want to talk about. They don't want to make it sound like they're not free to talk, right. I mean that wouldn't sound good. But there are some cautions that people have, and there are some, you know, there are some, can be some repercussions. There can be some stigma with having a kid with a disability. It can limit the transfers. It can limit career opportunities because they are concerned about making sure that kids, particularly if kids have pretty significant disabilities, that they're in places where they can get services. So then that can impact the career of the parents, right, of whichever spouse or both are in the military. So again, those were things that we really had to learn to be very sensitive to.

>> Again, speaking to the enormity of Camp Pendleton, we eventually established three service areas which corresponded to the counties of San Diego, Orange, Riverside, so a lot of time in the car, a lot of time, you know, just trying to reach all these diverse, expansive geographical areas. Karen mentioned the establishment of the off, off-site case. [Inaudible] were set up I think in the second year or so of the project. And as Karen mentioned, that really is [inaudible] a lot of positive, you know, [inaudible] to access to [inaudible] the comfort among the families who are taking part in the project. But, you know, services were very much in the context of where people lived and where they, you know, kind of experienced their life. So services were provided on base, in family homes, school, as well as the office. We tried to really reach out to where the need was and meet that need at that location. So very much was not just, you know, [inaudible] and this really was the work of Jeremy and Margo and the staff of EFRC. It really was staged, again, where people, you know, live and experience, you know, their lives.

And the final thing was, which was very important in terms of establishing this project and establishing the buy-in from the Exceptional Family Member Program, which stated that we were not going to replace that program. That was made very clear to everyone that that was an important design of the project that we were going to be complimentary to what they were providing. And I think it gets back to the idea of working with them in partnership and, you know, enhancing some of the things that they do. And, you know, perhaps I think providing some ways to do certain activities and ways to supporting families that may hadn't really done before. And I think that's going to [inaudible] when we talk about sustainability of Project Pendleton, you know, after the funding ended. And again, it was not to replace what EFMP did but to be a complement to what they did.

>> So one of the ways that the folks working with us on the project would do to really build that rapport and build that trust with the families is sit down and do a family map. What was happening? How is the family surviving? How are they getting by? How were they drawing on supports when, as we mentioned earlier, they may not have their natural support of their extended family. A lot of times friends become family because they're in the same situation, right. And particularly if they have connect with other families who have kids with similar needs, it's going to be easier for them to draw on that support. So really helping them to look at what were the factors. And these are, are white here, not exactly, not real obvious, but these different colors. So the things that were helpful, the support groups, the school, the EFMP, the neighbors, were really helpful. Having that extended family, friends, church support, were really helpful in making sure that they had those additional supports or people that they could go to for information or resources or just somebody to talk to. But they dealt with a lot of other challenges and a lot of other stressors around financial problems, Mark referred to that earlier, deployments.

Deployments happen all the time. And it can happen for either or both of the parents. And then that isolation that folks often feel, whether it's because they don't have family and friends or because a spouse is deployed or just because they're feeling like maybe I can't talk about this with other people who aren't in the same situation. So there was a lot of, you know, they felt that isolation pretty strong. Which is where support groups really were helpful, and we did have people who really took advantage, particularly of the sibling groups. And we'll talk a little bit about that later. So we kept with that person-centered, family-centered approach. And so one of the things that we did was wanting to make sure that each family had that opportunity to do a map to identify what it was that was working for them, what they needed, what we could possibly help with. And looking at it for their particular, so for the family as a whole, but then looking at what their particular child needed. How could they look at it? How could they look at things that were working well? How could they look at, if they were having problems? There were a lot of issues around how do we get the right support at school. How do we deal with the IEP process? Which is not uncommon to lots of families who have kids with disabilities. Trying to navigate that system. And having the access to that be very different than how they access military information. So again, there was like, well I know how to go and ask for it here. But I don't know how to go and ask for at a school. I feel out of my element. And so really trying to help them get whatever resources and support that they needed to make sure that their kids got what they needed and they knew how to ask for it.

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>> So in terms of the day-to-day types of services, you know, was a range of different types of things. I think a lot of things we see here really focus on how to have the Project Pendleton families really support each other. You know, because the idea is that they have, you know, lived this experience. You know, maybe they have been at Camp Pendleton for a number of years, and they can really guide new families that have arrived to Camp Pendleton on what to expect and how to navigate the services in their areas. And it gets back to this idea of how the person-centered approach to planning that, you know, we're not going to be a top-down type of thing from professionals. It's really going to be guided by families. And so we, you know, we had the parent-to-parent workshops, sibling workshops. Both of those really involve, again, you know, peer support, guiding other parents, other siblings on, you know, what they have experienced and what they can expect in the future, what's most helpful, what's most supportive. There was an annual holiday party. There was a dessert social.

>> That was the ice cream social.

>> Yeah. We had a number of our students, you know, take part in that, and I think for them it was very educational. Just to see this kind of, you know, family peer-to-peer support in place in person. And then one of the most innovate things that was established was something called a change of command notebook. And if you look at the title, the titles really reflect military culture. It gets back to really understanding the culture of where we were operating. So titles like scheme of maneuvers, command and single, you know, these are not titles that most people, you know, outside the military probably use on a daily basis. But one of the purposes of this would be that if you had like what we call a substitute caregiver, maybe like an extended family member comes over because maybe the family has to, you know, be deployed quickly or that somebody has to come into the home on a, without a lot of preparation. So this change of command notebook, it has information on things like allergies, special diet information, support elements, that were really specific to the care recipient. Things that really would make all the difference that somebody, again, without a lot of preparation, may not really announce. So this information would be in one central location. And then information perhaps that they are newly arrived to Camp Pendleton or if they're going to a different duty station, information on logistics at that setting, administration. Who could be families, allies, extended allies in that setting. But again, just really provide a mechanism, a system of support, that could help the transitions that so many of the families went through on a regular basis.

[ Inaudible ]

>> One of the few kind of basic counts of things that are important like, you know, how many families have you had contact with and how many have you engaged in in kind of a service level of work. And then how many families have you kind of worked [inaudible]. That wasn't too terribly difficult, and we'll talk about what those outcomes looked like later. But then in addition to that, we kind of built in a fair amount of [inaudible] evaluation that we could use to kind of feed back to the program to kind of change things going forward. One of the things in the program design was that we weren't going to just start out with a full menu of services. We're going to start with a few things that we have a pretty solid idea that were needed and then kind of use data gathered in the course of operate in the program, sort of figure out what the other important needs were that weren't being met by the EFMT or somebody else. So, you know, that brought us to the point where we were able to kind of conduct focus groups with the families on a regular basis. And then we even did it with the advisory committees too. Gathering data from them about what they saw as unmet needs. And then we even took information from the focus groups and the families and ran it past the advisory committee to see how they felt, you know, what their reaction was to it.

You know, in addition to our reaction to it. We used all that just to kind of plan out how the program would grow and develop and what additional services to offer, if there were things that we were offering that weren't really valued or met somewhere else, we could learn that as well. So that was a lot of the focus really turned into kind of the formative phase, growing the program, developing the program. And, you know, in addition to kind of keeping track of the, you know, who we served and that sort of stuff. And that brought us some of its own challenges because we had to think about, okay, the way we like to manage data, corporate data, and the way that EFRC is used to managing data, working with data and then what the feds wanted from us. So that was fun, kind of. And then we also, in addition to that, conducted some planning alternative features with help or path plans, right, with Project Pendleton at the center. So bringing together different stakeholders in Project Pendleton and kind of planning out what the future of Project Pendleton looked like.

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>> So that was really fun. So I got to facilitate in a couple of these path plans [inaudible]. So this was our staff [inaudible] and the main families, the SRP families who participated [inaudible]. And so we spent a couple of hours and, you know, looked at where we wanted, where they wanted to be. With the idea in mind that we knew our project scope was limited. Both the scope of what we could do, but also the length of time. And so we wanted to make sure that whatever we did that worked for them that there was a way for that to be [inaudible]. It was a really fun way to get people to [inaudible] where do they want to be. Whether they want to be known as, and this was the second one we did. And when we did this one, the one in 2015, this is when we found out that we were not going to be funded for another year. And so, but we brought the old one and checked it off. They had done everything that they set out to do, them and us together. And so it was deciding what they wanted to see, and you can see the kinds of things in the future here that military culture was [inaudible]. And it's a safe place to ask for support. And so some of these things that we've mentioned really came through in here, connecting families both on and off base.

Ongoing [inaudible] before, during and after a crisis, not just during it. But ESMP is not a label. So you can kind of see the things that came out really empowering families and what they wanted to sustain beyond the formal timeframe of the proposal. Looking at how they maintained their connections with resources that they knew, some of them knew about. Some of them hadn't had strong relationships. So we started building them and making sure that those were continuing. And who we needed to get involved and who needed to be able to, who could make some of these things happen. So it was so great to be able to go back and say, okay, we checked everything off, and now we're moving forward. Here's the things that you're going to continue to do. So this ended up being a really good process for them to use and for us to use, as Mark said, as part of the whole evaluation.

>> Just some of the evaluation outcomes. I don't think it's approximate. I think it is 167 families. Those are the ones that we sort of said that the staff worked with pretty, you know, intensely. Yes, we want to get involved in Project Pendleton, be a part of that sort of thing. So yeah 167 families were the ones they worked most intensively with. Of that 167, 130 of those families were ones that they actually work intensively to develop that family service plan which, you know, involved a lot of work. Then in addition to that, the 356 folks is kind of an unduplicated count, because those are different folks. And those are folks who came in for service and then said, you know, I don't want to necessarily get involved with Project Pendleton on a regular ongoing basis, but I need help with this. Or I need help with that. So they, you know, Margo and Susan were able to kind of coordinate for them services or help them out in one way or another without them saying we're on board for the full, you know, we want all five courses. And then above and beyond that, there were those 10,000 other folks that said, mostly Margo and Susan, had contacted them incidentally at resource fairs or parent workshops and things that were going on in school, that type of stuff. So they touched base with a lot of folks over the four years.

>> You know, and these numbers that we have here, one of the reasons why we're able to report this data is that we had to report this to the federal government. We had certain benchmarks we had to reach every year. So we had to recruit 40 new talents each year. There had to be a certain amount of services provided each six months. A certain amount of family plans that had to be established. So again, these were things to really kind of carefully monitor over the course of the project.

>> And one of the things that we weren't able to do was we wanted to train some peer mentors with older kids. And we just couldn't find them. I mean we had young families who had young kids. And so it was very difficult to find kids who were transition age. There really were only a couple that we even heard about. And so that was something that we had really hoped to do. Now, of course, those kids are all older. We could go back now and find all those kids, if they're still there. Yeah. So I think just because of the age of the families and kind of the resources and how things are set up here, they tend to have younger families with younger kids. So that's was something that we did have to change. Because we couldn't train them if they weren't there. But in looking at what folks had talked about during this last path plan and other discussions that we had with them, some of the things and then Susan actually went back. She's maintained a lot of good contacts with the EFMT folks and other families at Camp Pendleton.

We found out one of the families who we worked with, or one of the EFMT staff who we worked with the whole time who's still there is from, where's she from? Was she from Palau I think. I think she was from Palau. I think her family was from the federated states, but she lived in Palau or vice versa, one of those. And so she was one of our connections from the Pacific. But this continuation of offering workshops and activities, making sure that we're invited. We're all still on their list [inaudible], so we get announcements when they're doing things. So that's been really helpful, having the involvement in their committees, around people with disabilities, making sure that the connections. Because they connected with what, three different regional centers. I don't remember how many school districts, you know, both on base and off base. I mean that just gives you again that scope of the distance. They're still using the change of command notebook and that format. That's been really helpful. They're still doing, using the kind of person-centered planning that we hope that they would do. And then keeping a database of the different kinds of trainings. And apparently, they're still doing some of the sibling workshops. So it's great, it was great to find out that there's a lot of the things that we helped set up, that they're still doing, that they found helpful. So that's always nice when a project ends that things don't just fall apart.

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>> So in terms of lessons learned, many lessons learned. I think one is that you're not, any family in general, it takes time to develop trust and to develop working alliance and partnerships and these kinds of things. But I think with the families we work with at Camp Pendleton, it seemed like maybe it took longer, especially, you know, if we're viewed as outsiders coming in, we're not part of the Marine Corps culture. So to show, you know, that we understand where they're coming from. We understand, again, that culture. We're respectful of it. You know, that took time to salvage that kind of relationship, as well as with all the professionals on the base. We really have learned that family is the best position to recruit new families. That made a tremendous difference with getting new people into the project. Which, you know, makes sense, kind of related to the first point. If there's the collection of, you know, a need to establish trust, it's, you know, us coming from CSUs to say we have this project. It took a while for people to really buy into that concept, so one family talking to another family saying, you know, this that, actually something to consider. That made a tremendous difference with getting more and more families into the project and had we been able to go on for many more years, it probably would have continued to really build, on top of the success we had. It takes time to understand Marine Corps protocol and the chain of command. It's definitely, you know, reflective of the rank, you know, culture, hierarchy.

And you know, the Marine Corps is separate from the other military serves, have a number of unique kinds of things that are specific to the Marines. So to learn that, it takes time to really learn that and kind of work within that culture. And then, you know, developing relationships and trust with EFMP staff one person at a time. So it's not like, you know, we can meet in a room like this, have a two-hour meeting and it's all taken care of. It took a lot of time to get one-on-one discussions, relationship-building you really get to know each other. Again, that takes time. But that was really, you know, critical to the design of this project. And the value of activities workshop, education and community participation to increase awareness. And then to get away from the sense of stigma about receiving this kind of support or being, you know, being able to acknowledge that you have a child with a disability, you know, for some of the reasons that Karen mentioned previously. You know, that it's a challenge for a number of Marine Corps families to have children with developmental disabilities. So I think that a lot of the design for this project really helped to provide like a safe space, a sense of community to get past that sense of stigma. That's all of our slides. So we have some time for questions. Also, for the online people.

[ Inaudible ]

>> Oh I know. But what would be under that section in the military?

>> So scheme of maneuvers would be, what's the daily practice. Okay, so using that terminology, but applying it to something that would make sense to the family. So scheme of maneuvers to me is more like okay, here's what the daily routine is. That would be your scheme of maneuvers or here are some strategies if this doesn't work, then this works, right. And what was the other one you asked about? Command and [inaudible]. So that could be.

[ Inaudible ]

>> We had technical assistance remember from the military [inaudible] developmental disabilities contracted with a private, I guess.

>> It was, yeah, it was military people.

>> And they came out and like it was for us it was a full day of just jargon. That was sort of their technical assistance. At least my take from it. They explained all these military words to us.

[ Overlapped Speaking ]

So going to the manuscript we're submitting, so I've got a little more detail. Because it speaks to like these are not second nature terms, and we had to read this again. So alright. So administration logistics referred to medical information that we had to know, that families needed to know about the child. Command a signal school information.

>> Or that could also be if there is specific communication needs or I would think, you know, under commanding signal could also be, you know, how do you, who do you contact.

[ Inaudible ]


[ Inaudible ]

Yeah, because you can't jump over people. Similar to universities.

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>> There's a term.

>> You can't go directly to, you know, the provost if you don't go through your dean.

>> Oh yeah.

>> Those kinds of things.

>> That's for sure. So we've got one thing right now. So according to the attachments and detachments, likes and dislikes. So. Attachments and detachments.

>> And for friends, the terminology is allies.

[ Inaudible ]

We learned a lot.

>> We did. Yeah. It was very educational, absolutely. Do we have a question online? So it says, I think I heard you knew in advance that the funding was going to end.

[ Overlapped Speaking ]

Yeah, it was pretty sudden. So when this was known, how did you advise the families? What were their reactions.

>> Well part of what we, that's way we did the path at that time because we let them know, and we wanted to do it in person, and we wanted to have a plan for what was going to happen next. Because we didn't want them to feel like we were leaving them hanging. And so that was the, I mean we were going to be doing a path anyway, but this ended up being, you know, we did it around the timing right after we found out that the funding was going to be ending. So that was, it really helped so that they had a say in it so to speak, you know. And what we found out is basically that the Department of Defense really wasn't getting any feedback about what was happening in the program. So Health and Human Services wasn't communicating with the DOD, and apparently instead of looking into it, they just decided maybe nothing was being done, or nobody got the reports. I have no idea. I mean that was as much as we heard.

[ Inaudible ]

>> Prior to releasing the RSP. Because [inaudible] did not know that this RSP was in the midst of what we were doing [inaudible]. It took a lot to explain to the community and Pendleton. I think too, the fact that.

>> They didn't follow [inaudible].

[ Overlapped Speaking ]

>> Initiation of command.

>> So I mean it sounds maybe a bit grandiose, but it's one of the reasons why we want to get this in publication, why we want to talk about it in conferences. Because there's sort of this feeling to what we're saying here that it just kind of like stopped like this. The information, the things that are from this project are kind of in a box somewhere, nobody's ever going to know about it again. Which is really unfortunate. There was a lot of money, a lot of time, you know, put into this.

>> Yeah. And we're not sure what kind of outcomes the other projects had. From the phone calls, it appeared that they ran into similar challenges with communication and the trust that, it seemed like they didn't have, number one, they didn't have the family, the family piece that we had that was so strong.

[ Inaudible ]

Yeah. So they were starting from square one, and it didn't seem like there were as many things that came out of those other projects. At least from what we could see, right. Because you guys went to a couple of the national meetings.

>> Right.

>> Were you getting that information from [inaudible], or were you getting that information from [inaudible].

>> Well they went to the national meetings with the other folks, so.

[ Overlapped Speaking ]

>> I want to go back to your question about how did they share those things. He did provide him with the documents that we were provided that said the process is [inaudible]. But interestingly, that begins our very flexible understanding of [inaudible]. And they could be there one day and [inaudible] overnight. And so they are very understanding and accepting that this is the

[ Inaudible ]

>> What percentage of the families served [inaudible] things were participated in the project Pendleton?

>> [Inaudible] a small number [inaudible] like 2,000 [inaudible] families on the.

>> Something like that. But remember, those weren't all kids. Because anybody can be, you know, if they have a spouse, they have a parent, whatever. So small percentage [inaudible].

[ Inaudible ]

[ Applause ]

[ Inaudible ]

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