The National Center on Advancing Person-Centered Practices and Systems (NCAPPS) is a national technical assistance center funded by the Administration for Community Living and the Centers for Medicare & Medicaid Services. HSRI is serving as the Center’s administrator, coordinating and providing assistance to help states, tribes, and territories implement person-centered practices. In this week’s episode, nursing home abuse lawyers Rob Schenk and Will Smith welcome Alixe Bonardi, Bevin Croft, & Shawn Terrell to discuss NCAPPS’ mission and goals.
Schenk: Welcome back. My name is Rob Schenk.
Smith: And I’m Will Smith.
Schenk: And today we’re going to be talking about the National Center on Advancing Person-Centered Practices and Systems, which is the brainchild for the Administration for Community Living and Centers for Medicare Medicaid Services. The goal of NCAPPS, that’s what we’re calling it, NCAPPS, is to promote systems change that makes person-centered principles not just an aspiration but a reality in the lives of people who require services and support across the lifespan.
Smith: So essentially it’s a policy-driven organization that’s trying to take something away from just a system-based perspective and look at a person-centered perspective.
Schenk: Generally we have a guest to help us. This week we have guests. We have multiple folks coming on and representing NCAPPS in varying degree. All right, NCAPPS gang, welcome to the show.
Shawn: Thank you.
Schenk: All right, this sets a record for us in terms of the number of guests on one particular episode, so this will be fun. Normally Will does the introductions but I think for time purposes, we’ll have you guys introduce yourselves, so we’ll just go down the line. We’ll start with Shawn. Shawn, can you tell us a little bit about yourself, how you came to where you’re at?
Shawn: Sure, so Shawn Terrell and I’m with the Administration for Community Living. I work on policy issues mostly focused on home and community-based services in long-term care, more generally. The Administration for Community Living is an agency in the U.S. Department of Health and Human Services. I’ve been in the field doing this kind of work for over 20 years.
Schenk: All right. Welcome to the show, Shawn. Appreciate it. And then Alixe, what about you?
Alixe: Hi, this is Alixe. I work at Human Services Research Institute, which is involved in administering NCAPPS – we’ll talk about that in a minute. I am an occupational therapist by training having worked in a lot of different settings for people with disabilities, particularly people with developmental disabilities. I’ve been working in policy issues and issues assuring quality of services for people with disabilities for the last 20 years or so.
Schenk: Fantastic. Thank you, Alixe, and welcome to the show. And then Bevin, what about yourself?
Bevin: Hi, Bevin Croft, I’m also at HSRI and Alixe and I co-direct the NCAPPS. I am a social policy researcher by training and my area of focus has always been around behavioral health, specifically adult mental health services in particular. I am particularly interested in looking at different models that explore shifting choice and control into the hands of people who use services, so I have conducted research on self-directed care, which involves individuals managing their own support budget to pursue recovery goals and also different kinds of peer delivered services. So these are support services delivered by people who have their own lived experiences of the mental system who are providing sort of mutual support to people in the mental health system. So Alixe and I coming together from kind of two different fields bring a few different perspectives around supporting people with disabilities in person-centered ways.
Schenk: Well welcome to the show. Appreciate all of you guys taking time and coming on to talk about stuff.
Shawn: Thanks for having us.
Schenk: So I guess the main crux of the episode is about the National Center on Advancing Person-Centered Practices and Systems, NCAPPS I guess is what we’ll call it. Can somebody out there tell me what is NCAPPS? What is its goal?
Shawn: Okay, so the National Center on Advancing Person-Centered Practices and Systems, NCAPPS, so it’s really brand new, a brand new initiative that the Administration for Community Living along with the Centers of Medicare and Medicaid Services with joint funding help states, tribes and territories implement person-centered practices broadly and to do it from a perspective of changing systems so that people who are supporting others in the community have the capacity support necessary to do their jobs in the most effective, person-centered way, and that people who are receiving supports and services experience a very person-centered service delivery system.
And so sort of to make that a reality, that’s the goal, that’s the broad goal over the years that we have, at least the first phase of this project. So it’s in-depth practical, technical systems. The states, tribes and territories working on establishing topics, specific learning collaboratives to promote broad-based learning and sharing of best practices, so we’re really trying to get peer-to-peer learning, whoever’s out there doing good stuff, get them in front of other people who want to learn that stuff and help us all move this thing in the right direction. So really the idea here is there’s something for everybody and that anybody who has something valuable to offer has some space in here to work with others to help, again, move these systems.
We’ll have educational webinars that’ll be open to the public and we’re also developing a national clearinghouse of actionable, up-to-date resources in the Center.
Schenk: Well that sounds fantastic, Shawn. So the cat’s been out of the bag with regards to how we produce this podcast, which is oftentimes in advance, sometimes as much as months and months in advance. So as this episode goes to air, it’s Monday, October 14, but you and I know we’re doing this way earlier in 2019. However, I’m not holding you to any dates, I’m not going to require you to be solid on what you tell me, but when does the program – when is the anticipated start date of the program?
Shawn: Yeah, so the official date, it sort of became a thing upon the launch of the website which was in January of this year, but we’re rolling out different components and we’ll continue to roll out different components probably through the October date that this airs. So right now, we’re right in the middle of the first cohort of technical assistance recipients so we have 15 states that we’ve identified that will receive up to $300 of hands-on technical assistance over the course of three years. We selected those states late March and we’re now working with this cohort to develop a technical assistance plan and we’re also going to be shortly rolling out at least a number of learning collaboratives as well as webinars in the coming months. So by October, we should see some real movement in both technical assistances to these states, a much better picture of the kinds of issues that the states want to work on that we’re going to be helping them move on as well as some learning collaboratives that will be visible and open to – some parts of these learning collabs will be open for public interest as well. They’ll see some webinars happening. So all that should be rolling along pretty good by October.
Schenk: That reminds me of – I love the Oceans 11, 12 and 13 movies, and that’s an ongoing job in Oceans 13 is that they’re going to do a – it’s not a bank robbery, it’s a casino robbery – and the crew is going to do it on this soft opening of the casino, and half the characters don’t know what soft opening is. It’s basically an out of town preview before they actually have a hard, grand opening. And so it’s the concept of like, rather than wait and deny the public the casino for months and months, we’re just going to unveil a little bit at a time. And that’s a long way to say I know what you’re saying not rolling it out at once. You’re rolling it out over a series of steps, and that’s caught my mind – Oceans 13. Love that movie.
Anyways, so let me ask this. Let’s keep it 40,000-foot view. What does the person-centered in the title of the organization mean? Like what does it mean to you guys to be person-centered? Why is it so important that it’s in the name?
Alixe: Sure. This is Alixe. So again, keeping it at the 40,000-foot view, person-centered is a really simple idea and then it can get complicated pretty quickly when you start putting it in the context of service systems. So the first idea is just making sure that you’re keeping the person who needs support, be it life-long support, age-related support needs or short-term support, keeping that person really at the center of focus when planning for giving them the supports they need, for providing care to them and really not letting it become a diagnosis-based focus. So it means being sure that person with a disability or support need really drives the decisions that relate to their life.
Depending on the context, we also sometimes talk about person, family and community-centered support, really thinking about all of those influences on a person’s life, actually, but again, putting the person’s needs at the beginning.
Person-centered thinking is one part of how we approach this and really the foundational principle, it means that we are having consistent language and our values align and actions really to show respect to the person and their loved ones and really demonstrate that they are being respected as experts in their own lives.
Schenk: That’s a good way to put it.
Alixe: I think that’s important to keep it that way. Right? Person-centered planning is an approach that really identifies the person’s preferences or interests that make up what the person identifies as their own good life. This doesn’t mean that planning is only about the actual pain supports people can get but it can also involve supports in their community, their family supports, thinking really broadly around what makes the person’s life whole. That’s all part of person-centered planning.
And person-centered practices, that’s really having all of these things that the values and the concepts line up with services and systems to make sure the person really can access the life of their choosing and they get the full benefits of community building as they choose so that they can really have the life they want to life.
Just an example, I will say, of what makes person-centered important, we have research that shows that people who are feeling that they are making their own choices in their life that they can drive and direct choices in their life, that’s sort of a core part of person-centeredness, research shows that people have better life outcomes, that people are healthier and have better connections in the community and are happier.
And as an example of person-centered approach, just really on a concrete level, for somebody, for example, somebody who is residing in a nursing home, if the person identifies that for them, it is important that they have extra time to be spending time with a visitor or just some extra time to be alone, frankly. If that cuts into lunchtime, person-centered practices would really guide that that person would be able to have a choice that they would have their meal later and the system should be allowing for that kind of thing. So that’s just a concrete, small example of how that might play out.
Schenk: That’s really refreshing that you say that each person should be their own expert on how they feel and how they want to be taken care of. That’s really refreshing when you have a society and a community that’s like, “Well let’s look at systems, compute it, assess it, you’re X, Y, Z. This is the treatment you’re going to get,” rather than focusing on, “Here, how do you want to be treated? What do you want to have done?”
Smith: Well that’s the whole, like, in nursing homes, and I worked in nursing homes for a long time as a CNA, they’re not person-centered by large. It doesn’t matter that you want to spend time by yourself or a little extra time, because if it cuts into lunch, you can’t do it because there’s a system in place. And so it’s very good this hopefully starts a change in that.
Schenk: So you guys had mentioned there being webinars and very types of assistances to the states, tribes, territories. Can you guys get more specific? What type of assistances specifically are being provided to the states with this regard?
Bevin: Yeah, sure, this is Bevin. I’ll talk a little about technical assistance first because that’s the activity that we are most engaged in at the moment. So in January, we put out a call to states, tribes and territories inviting them to raise their hand and apply to receive some specific technical assistance from NCAPPS. And we really publicized this as an opportunity for states, tribes and territories to work together across agencies so we really hoped there would be kind of state level “your ship coming together,” maybe aging agencies, intellectual development and disability agencies, behavioral health agencies, collaborating together to come up with ideas on how they can kind of work together to bring these principles into their system. And we really offered them this as an opportunity to have access to really the form of experts in these sort of these principles and practices around the country and do some targeted one-on-one support to set some specific technical assistance goals.
The response to the call for applications was brief. As Shawn mentioned, we had 15 – there were ultimately 15 states selected. We received over 30 applications from different entities and had a one-on-one call with each of them to really talk through what they were hoping to accomplish. And selecting the final 15 was actually pretty challenging because really all of the applicants had worthy and important goals and were really interested in driving culture change, really changing up the way that they do things to bring that voice of the service institution, the voice of the family forward in the way that they organize their supports.
So the way this is going to look on the ground for the 15 states that were selected is that they’ll have access to up to 100 hours per year of technical assistance for up to three years, and those 100 hours will be delivered by subject matter experts. These are people who are deep experts in specific areas that align with whatever the goals of the state is. And then we’ll work with them through NCAPPS with our subject matter experts to develop kind of concrete technical and business goals for them each year, objectives, action steps, who’s responsible. So we really selected states that are ready to go and are ready to make meaningful, concrete changes.
Bevin: And so actually Georgia was one of the states that made it through to the final 15.
Schenk: Yay, Georgia.
Bevin: Yeah, and we were pleased. We were pretty impressed by them to be honest with you. We had a really good discussion with them.
Smith: Who’s the them?
Bevin: And their goal, I can talk generally – hope I’m not giving too much away, I think they won’t mind – their goals, I’m just looking at them before we got together this afternoon.
Smith: If you can answer – who is them when it comes to Georgia?
Bevin: Oh yeah. Sure, Georgia. So the Department of Human Services, the Department of Aging Services.
Smith: Ah, okay.
Bevin: Yes, yes. They’re the lead agency but they have plans to really collaborate across different agencies in the state, so this is not just going to be focused on services for older adults. It’s going to focused more broadly on services for people with disabilities and long-term services across Georgia.
Smith: Oh, good. Good.
Bevin: Yeah, again, as I mentioned before, we really want to foster cross-agency collaborations. These principles apply equally to every human really.
Bevin: So the idea is kind of have everybody get together and get on the same page.
Smith: Yeah, across agency interaction is really important. We just spoke with somebody dealing with the criminal side of elder abuse and exploitation and one of the issues that they’re having is inter-agency communication in the same way that pre-911, the FBI didn’t talk to the CIA and vice versa, so we came up with the Department of Homeland Security to try to fix that. He was saying that we need something like that in the elder advocacy because there are so many different moving parts and there’s really not a lot of centralization there.
Bevin: Right. Yeah. So related to that, that’s the goal that Georgia identified, which is actually one of the most common goals with all the applicants, all the states, tribes and territories we talked to identified was around having some kind of common language and common criteria so we can evaluate whether or not something is person-centered regardless of what system it’s in.
Bevin: So can we have kind of common information about people’s experience and whether or not they’ve experienced things that are person-centered, whether you’re at a nursing home or you’re getting personal care or you’re getting personal care in your own house or you’re receiving services at a clinic or day center or something like that.
Bevin: So that’s one of the things we’re hoping to help the Georgia Department of Human Services out with.
Smith: Well I hope you can.
Schenk: We need all the help we can get down here.
Smith: We really do. Elder care and the systems we have in place taking care of the elderly are not the greatest out there, I can tell you that. I mean this is what we do for a living is try to punish these places for misbehaving.
Schenk: Yeah, and so transitioning into some of the education that’s planned, what are specifically some of those webinars, some of the seminars, the instructional presentations that are being planned?
Alixe: Yeah, sure. This is Alixe again. As you’ve noticed, there are a number of us here gathering together. It really is kind of taking a lot of people to bring together a lot of different areas of interest and expertise and we’ve gotten great response from people interested in technical assistance as well as a lot of people interested in a whole range of webinars and other opportunities for peer-to-peer learning.
So for example, some of the webinars that we are gearing up to deliver, which will be available publicly – again, this is what we’re trying to do is to provide things at multiple levels, so these will be available to anybody who’s interested. One, for example, talking about applying person-centric thinking and planning and practice in long-term care settings as a webinar to help people think through some of the core concepts there. Also cultural and linguistic competence in person-centered thinking, planning and practice – that’s an area we’ve gotten a lot of questions and people really see a lot of opportunities for improvement frankly.
We’re also – there are also particular interests in, for example, using electronic health records in person-centered planning as people look to move to standardize some records keeping, particularly in using electronic health records that can be shared with other providers. That’s a great opportunity on one hand. On the other hand, it ends up being like a bunch of check boxes that people are asked to check off and it’s very hard to make that really aligned with the person themselves and giving the person really the opportunity to control how they see they really want to be receiving services. So those are some of the webinars we’re introducing.
In addition, we are gearing up to peer-to-peer learning, which is what we are calling our learning collaborative. The learning collaborative will be bringing together groups of states, tribes and territories who are particularly interested in a topic. So for example, topics around being able to self-direct services, really just taking available funds and hiring and manage people for supports for self-direction. There are a number of different models and there are some great examples of where it’s being done well and some great examples where people are just trying to get it up and going. So peer-to-peer learning, bringing together groups of states for probably a period of about 18 months of regular meetings and working for a very structured process of trying to make progress in their particular system.
We also are developing learning collaborative around supports for people with brain injury, particularly person-centered supports for people with brain injury and what that means in terms of supporting people in the community and accessing community and other supports for people.
And actually, at this point, we are targeting for early next year in 2020 a peer-to-peer learning collaborative getting started ensuring person-centered planning in older adults is another peer-to-peer opportunity that we’ve got targeted for early next year.
Smith: And what can you tell me about the national clearing house of resources?
Bevin: Yeah, this is Bevin. We have a website up now – ncapps.acl.gov – and it has a fair amount of information on it. And we have a resources page on that website, but right now, it’s just kind of got a sprinkling of resources, and we really hope that within a few months, I hope by the time the podcast airs, that this really becomes much more of a clearing house and not a sampling of tools, articles, papers, webinar recordings, presentations.
Bevin: Podcasts, absolutely.
Bevin: And all kinds of materials related to person-centered planning and practice. We’ll put when we create our own original materials – that will be up there too, but we’ll also draw on content around the web that’s already available and make sure that it’s all in one place. We’re working on trying to figure out the best and more intuitive way to organize the materials, but the idea will be that this can be a useful resource for anyone who’s interested in learning more of interested in being more person-centered in their organization to just get on the web and have freely available tools and resources to use.
Smith: Are you guys familiar with Richard Mollot and NursingHome411.org?
Smith: You should check him out. We can send you information. He works a lot with Consumer Voice and the NursingHome411.org website is just resources related to mainly long-term care settings, which is not the only thing you guys are focused on, but there is some overlap there for sure.
Alixe: That’s great. I’m glad you bring it up, because as we have conversations with folks, they always bring up some kind of their favorite resources and the resources they find most useful, and we will be, by the way, linking to other websites in our resources as well, but anyways, we really hope to kind of crowdsource this as well. So as we go talk to people around out in the field, we’re asking them, “Hey, send us the resources that you think are most useful,” so we can kind of keep adding more and more and refining as we go.”
Schenk: Sounds fantastic. In the last minute or so that we have, guys, is there anything else you want to add about the program?
Shawn: This is Shawn. I just want to really point out the great work HSRI is doing here in making this sort of – it’s been a policy issue for over 40 years and this is really one of the more tangible and concentrated efforts to really try to help these businesses to move in the direction that we’ve all been sort of promoting and trying to help do for decades now. So I think that HSRI is just doing a wonderful job in giving this thing a real shape and making it a reality. So I want to just say that from a general perspective.
Schenk: Yeah, we don’t have a big budget for this podcast, but if we had a budget, I would have a little button I would hit for applause and I would hit the applause button for HSRI. So just, yeah,
Bevin: Thank you.
Schenk: Well great guys. Thank you guys, all of you, so much for coming on, sharing your knowledge and your excitement for this.
Smith: And thanks for what you do in general because this is sorely needed. We need it here in Georgia. I’m glad we get to be a part of this, but hopefully after the test run of the 15 states, we can start to pass it across borders as well.
Alixe: For sure.
Bevin: Of course.
Schenk: Great. All right, thanks guys.
Shawn: Thank you.
Alixe: Thank you.
Bevin: Thank you.
Schenk: So I think that it’s important to talk about person-centered care in the long-term care setting, especially this month, because October represents Residents’ Rights Month, where we talk about and raise awareness for the civil rights and the rights of individuals who happen to be residing in long-term care.
Smith: Yeah. And I’m also excited that Georgia is part of the program. I think it’s going to be really interesting.
Schenk: It’s much needed, yeah.
Smith: We can definitely use some assistance on person-centered care here.
Schenk: That’s right. So again, thank you to Shawn, thank you to Alixe and thank you to Bevin…
Schenk: …for coming on the program. And with that, that’s going to conclude this episode of the Nursing Home Abuse Podcast. You can consume new episodes of the podcast every other week on Monday morning. You can catch us on YouTube or our website, which is NursingHomeAbusePodcast.com or wherever you get your podcasts. And with that, we’ll see you next time.
Smith: See you next time.