Putting Self-Determination Back in Self-Direction

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Janet Stewart

Welcome to Impact the Conversation, a podcast of the University of Minnesota's Institute on Community Integration. It brings you strategies and stories advancing the inclusion of people with disabilities. Our guests are the authors of impact, our long running magazine, The Bridges. The Research to Practice Gap with professional and personal reflections on what matters most in disability equity today. I'm your host, Janet Stewart.

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Janet Stewart

Where is self-direction headed? About 2 million people today self-directed or Medicaid funded long term care services, which essentially means they make their own hiring and firing decisions about the care services and products that help them live their lives in the community. But there's a catch or a few catches, including strict and confusing regulations that vary widely across the states.

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Janet Stewart

Today, we're talking with the three guest editors for the new impact issue on self-direction. Julie Bershadsky is director of community living and employment at the Institute on Community Integration at the University of Minnesota. Marian Frattarola-Saulino is executive director of values into Action in Media, Pennsylvania, and she's board chair of the Alliance for citizen directed Supports. BJ Stasio is an advocate in the New York State Office for people with Developmental Disabilities in Buffalo, New York, and a board member for the Western Region of the Self-Advocacy Association of New York State.

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Janet Stewart

Welcome, everybody. It's great to have you here. Yeah, great. So, BJ, I wanted to start with you. Can you just give everyone your, just your thought on what is self-direction? Can you just sort of define it for us to get us started?

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BJ Stasio

No self-direction for me, represents the opportunity to take the life's journey that I never really wanted to take. But through the path of self-directed. And I've had the opportunity to find out who I am as a person. And it's great to have the staff support that I had to do that and the continuation of my life journey always continues.

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BJ Stasio

I can't wait to see what's around the next corner.

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Janet Stewart

And Marian, what about just from a procedural or a process standpoint? What, you know, for folks who don't really understand the structure of self-direction, can you just tell us real briefly what it what it is from, Medicaid? Hcbs point of.

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Marian Frattarola-Saulino

View, it's a policy arrangement that enables people to choose, to take responsibility, but also to, have the authority over decisions that would otherwise rest with a provider, community service provider. So I think at the at its core, it is about freedom, autonomy, and responsibility for taking control.

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Janet Stewart

Great. And truly, you know, when we set out to do this issue, there were a couple of things that that kind of kept a couple themes, kept coming up. You know, there were certainly the growth, of self-direction. It has been a popular program. Why do you think it has been as popular as it has been?

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Julie Bershadsky

I think there are several reasons for it. One is the the wider availability of the programs that option, sell itself with, you know, more states, more waiver, programs, especially with the onset of Covid. There is also, more education. There is also one sort of positive factor, perhaps, that is driving, the increase, potentially driving the increase.

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Julie Bershadsky

And that is the difficulty of finding, both staff, and the type of living arrangements and service environment. But, that, that people would actually want, in the traditional provider, service system.

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Janet Stewart

And here is where we get into why we did this issue. You know, Simon Duffy is well known, author and, and, advocate in the self-direction field. He's in the UK, wrote a paper one time with the headline if self-directed, something to the effect of if self-direction is so great, why is it still so hard? And and that is really the issue.

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Janet Stewart

It you know, we are trying to point out the, the benefits of self-direction, but also some of the policy and procedural obstacles that are kind of getting in the way of some of those, some of those goals. So, Julie, can you talk really from a policy standpoint, what are what are some of the things that in your article, you sort of, laid out the three of you kind of laid out as things that we need to think about as a field.

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Julie Bershadsky

There are so many, issues from sort of the policy and the system perspective that come to mind. One from my perspective is this the, challenges that we often talk about people self directing and the self-direction services or that model as sort of being one and uniform. But of course it is not. There is the of course, the staffing shortage is, crisis level everywhere.

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Julie Bershadsky

That includes the self-direction population. There is no training really, that is widely available to folks who choose to self-directed and who choose to direct their staff. There is no support, again, widely available to them. There are so many regulatory roles and hoops to jump through was often not, enough support available to people who chose to self-directed and that just sort of cascade, through all levels and through all systems.

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Janet Stewart

Marian, as a, as a provider, of services in, in within the self-direction community, what does that look like from a practical standpoint as, as you try to provide services in this field for us.

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Marian Frattarola-Saulino

I think that it's it's keeping the important thing the priority. Right? So it's about the people. And depending upon what a state decides to issue, re-issue, as a, as a policy mandate then can really impact how we keep the people as the priority. And for me, it's I came in, my career began really with the advent, the, the self-determination movement.

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Marian Frattarola-Saulino

I was very early on. And so it was always about the values. I mean, one of the first pieces of professional literature I read was the Community Imperative. And that was really the foundation and of the, of the Robert Wood Johnson Foundation projects. And so that's what I call upon. I call, you know, how do we not so much return to the values, but keep those values as the priority, as a provider of, of provider managed services as well as services that people are directing themselves.

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Marian Frattarola-Saulino

It it should be, of each provider's expectation that we know the regulations. And by knowing the regulations, we work with each person to figure out how do we get those regulations to work for them. So I tend to see the regulations less as an obstacle and more of just. Okay. So in this changing landscape, how do we keep the people the priority?

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Marian Frattarola-Saulino

And that often means revisiting what does this regulation mean in real life? How is this going to impact the person that's actually dependent upon the funding? Which means we have to help them be compliant.

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Janet Stewart

And how did we get away from self-determination in the first place? Where did where did that disconnect happen? Do you think?

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Marian Frattarola-Saulino

I would leave this to to BJ for the kind of to the final authority, but I would say that it's actually the more money I believe that has come in, the more regulation and with more regulation. I think that's the tendency in our field is the compliance. And so there's those of us who fight to balance that. Of course, we have to be in compliance if we're going to be good stewards of the public trust.

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Marian Frattarola-Saulino

Of course. I mean, that goes without question that we need to be concerned about compliance. And really, there are some of us who see the regs really as the basement, not ceiling. So we we can do this right. But it's how do we simultaneously never ever, ever compromise for somebody for us that means how do we never say no?

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Marian Frattarola-Saulino

We don't say now we say let's figure out a way to to do this and to and to make it happen. But I think that comes the price is the more funding you get, the more accountability there is to the structures that fund you. Which makes sense. I'm not arguing that, but we've moved away from focusing on the the building and sustaining of authentic friendships for people and relationships that don't rely on paid support.

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Marian Frattarola-Saulino

For me, that's so it's it seems foreign to me that we talk about a workforce crisis and in self-direction. Okay. Well, there can be issues with finding paid staff, but simultaneous. Why aren't we helping people to establish friendships, relationships with neighbors, with. Yeah, people at the coffee shop or at the bar down the street. So I think again, it for us, it comes back to priorities and making sure that the people are always the priority.

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Janet Stewart

BJ why do you think, we lost a bit of self-determination in the self-direction movement?

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BJ Stasio

Well, for me, I think it happens that the most linear level, not only being in receiving services from the system, but advocating for people within the system. I think systems tend to forget no fault of the system, that different people have different levels of understanding and different ways of communicating. So I think when you're talking about regulatory understanding and understanding of how things work, you have to meet people where they're at.

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BJ Stasio

Instead of where you want them to be. Just get to why we can't and how can we make what I need work? And I think that's the exacerbate with families and people serve that the regulation continuously changes based on the demands of what the people want from the system, and it's very hard to keep up with the changes once the demand gets so great.

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BJ Stasio

And to meet each person's needs, it has to work with the bandwidth that the system has. And sometimes it doesn't always work out the way we want it to. And speaking for myself there, there are times it has, and then I have to wait to see how things play out. And I think for me, as the a person in the system receiving services, the way to me is the toughest thing.

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Janet Stewart

We have a group of authors who are parents of adults living with significant, intellectual and other disabilities, and they have all been self-directed for quite a number of years. And advocating for the system. And they're the point in their article. They they tell their personal stories. But the point is that that oftentimes the system will leave those out who can't articulate, their needs, in a certain way.

00;13;23;02 - 00;13;55;06

Janet Stewart

And they really make a strong case for not leaving folks with the most significant disabilities out of the self-direction. Conversation. And that brings us to another pivot point in the issue, some news that, we're breaking with this issue of applied self-direction. Kate Murray writes in our issue that, early projections for the two thousand twenty four data on self-direction show another really big increase in the number of people in our country who are self directing.

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Janet Stewart

They believe it's now right around or a little above 2 million, up from 1.5 million just in the last year's data set. And this was a big increase, really. It started increasing substantially after Covid. Marianne, why was Covid such a catalyst for this?

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Marian Frattarola-Saulino

I think it it woke people up to the the limitations of program based services versus person centered person directed. I think, that's the simplest way for me to describe it. What we saw all around us were buildings closing, you know, people getting really, really sick from being inside buildings. And we were really grateful at that point that we had never opened a single building.

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Marian Frattarola-Saulino

Right. So I think the task then is how do you really, as BJ said, you got to meet each person where they are. And that was difficult during Covid because for some people, we couldn't have much of a discussion. It was like, we need somebody here in 15 minutes. How are we going to make it happen in the safest way, most, most respectful way possible?

00;15;07;18 - 00;15;36;15

Marian Frattarola-Saulino

So I think that Covid, altered a lot of things. The danger is we're doing some, some backsliding. And that's hopefully what, you know, this issue hopefully may deter and, and prevent that because there's a lot of really good lessons, coming directly from people themselves and their, their family members. And I think the lessons are not just about, oh, this is wonderful.

00;15;36;17 - 00;15;58;22

Marian Frattarola-Saulino

There's a lot of lessons about, oh, wait, we didn't think about things like when a family member is now a paid support staff and the context around that. So there's a there's a lot we could probably do a whole issue. Right. Just on that topic, you know, fraud, people concerned about fraud and people fraud in the system.

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Marian Frattarola-Saulino

And I hope that those kinds of lessons also extend to the provider community, because there's not a single thing that happens or is happening in self-direction that isn't also happening in the provider agency managed community.

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Janet Stewart

Given that, can you talk a little bit about what, what you do with the Alliance and, and some of the initiatives, including the Lives and Progress Collective that that DJ writes about in our issue. Can you tell us a little bit about your work with them.

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Marian Frattarola-Saulino

That be great? And I know this is I'll just, you know, proclaim my bias. But besides BJs, that was probably my favorite article because the Lives in Progress Collective, is really BJ's vision of sustaining, and that.

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Janet Stewart

Is BJ Stasio. Right?

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Marian Frattarola-Saulino

Have a raise. Thank you. BJ and I co-chair the Alliance board and the Lives in Progress Collective. Yes, his vision he won in our tank. I won't call it a contest, but yeah, he wanted our tank, for it being such an innovative idea about being a platform, an accessible platform that enables connection between and among people, with disabilities, but more importantly, people.

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Marian Frattarola-Saulino

So artists, business owners or entrepreneurs? Scholars, you know, and everyday people who identify as being disabled, who are willing to share their stories, with other people who are interested in learning more. And so it is an alliance, one of the two major alliance projects, the other project the alliance is undertaking is the the creation of a national support broker network, where we can bring together people in that critical role, and many people who direct their own services and supports find it necessary to use a supports broker or other.

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Marian Frattarola-Saulino

There's other titles for it, depending upon where you live. But this is really, a role that is conflict free and works alongside at the person's direction to help with employer related tasks, should be community facing in a in a system where most roles face the system. Right. And make sure that every component, is taken care of.

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Marian Frattarola-Saulino

So the person can use their public funding responsibly and effectively towards towards their life outcomes. But the supports broker role is is a role, that should be embedded in that person's neighborhood and community and helping them connect to the people and places and things that are important to the person so that the person develops a larger circle, if you will, of support.

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Janet Stewart

When you say it should be community facing, what what does that actually look like? What do you see happening? Like how would that all work?

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Marian Frattarola-Saulino

Well, I mean, I can probably guarantee at this very moment that there's members of our support broker team who are out with some money or without somebody, but at their direction, finding guitar lessons for somebody who's interested in learning to play the guitar or maybe it's betting, you know, a favorite pizza shop to make sure that it really is accessible, right?

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Marian Frattarola-Saulino

PJ they can say it's accessible all they want, but if you got to go in the back door, we don't really consider that being accessible. Right? So, so it's activities like that that are really focused on what, where are those places, you know, and of course, that stems from what the person says they're interested in or, or using that person centered plan, which we know a lot.

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Marian Frattarola-Saulino

We get to know a lot about a person. A big missing piece of the system is, what do we do with that information? Well, most system roles are looking for those specialized waiver services, as a support broker does not. In fact, we're not permitted to that's that's the role of a support coordinator. Right. So the broker takes that information and along with the person says, all right, where where are we going to start.

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Marian Frattarola-Saulino

Where do you want to go? Maybe there's places we never would even think you would like. But we're out and about and we're maybe talking to some people and having some coffee here. And then we're rolling over there and you're finding your way through your neighbor. I mean, supports brokers have helped people introduce themselves to the neighbors they've lived up the street from for ten years and never had the opportunity to meet.

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Marian Frattarola-Saulino

Think about how sad that is right now. Some neighbors, we meet them once and we're like, okay, everyone see that person again. But if we're fortunate enough to live in a community where you do have neighbors, like we watch the game with some neighbors last night, we had a great time. Those are the opportunities that people using services in our system, if they're lucky, if they're lucky, they get they get those kinds of those, those moments.

00;21;18;04 - 00;21;25;05

Marian Frattarola-Saulino

But we believe that, like, good service shouldn't be a matter of chance. It should be a choice.

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Janet Stewart

Julie, what's another article that really stood out to you in this issue?

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Julie Bershadsky

I was struck by one of the articles that was written by a direct support professional who was working and, in a self-directed space where, while they talked about multiple things, including how some of the, complexities of the regulations actually had to, force that person to, say no to somebody who was requesting them to work with them.

00;21;55;27 - 00;22;26;29

Julie Bershadsky

But then also they talked about how, often that direct support professional, that person providing services or providing support feels like they are the only ones who care about what the person that they're providing supports to actually wants to do, how they want to spend their time and, where they want to focus their energies. And that is because that is not reflected in any kind of life plan.

00;22;27;02 - 00;22;51;10

Julie Bershadsky

And really, how do you get it reflected in the life plan if nobody wants to listen? So that's that's there was a frustration was that came from, somebody who was supporting a person for directing. And, that was that was a powerful story to me that sort of illustrate some of what we are, some of the challenges.

00;22;51;12 - 00;23;02;11

Janet Stewart

Yes. That was a great personal story by Allison doc. You know, we really only have a few minutes left, so I wanted to ask each of you, just for maybe some final thoughts.

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Marian Frattarola-Saulino

The whole training, you know, stem element, component. We hear that a lot.

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Janet Stewart

And how do you hear that? Is it people coming in saying there's not enough training or, What? Because what would it what is it that's needed in training?

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Marian Frattarola-Saulino

Well, it's it's actually really it's interesting to me. I actually wanted to talk with Julie more about it because she helps me, like, process stuff outside of my own head. But it's, it's we rarely hear it from people using services. Right. Because, BJ, I don't know if this is your experience, but, like, people know what they want their staff to know and what they don't know that they don't know.

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Marian Frattarola-Saulino

Hopefully they've got a good broker or good, you know, people in their circle that could be like, hey, what about that? You know, but I don't think that's any different from anybody else. It's like we need people in our lives, right? We hear it from family members who I believe in large part, have been we've indoctrinated them to believe that somehow training hours and formal training, just like we've forced like fed them the notion that the bigger your kids service budget, the better their life is going to be.

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Marian Frattarola-Saulino

And I think we're we're witnessing it doesn't there's I have never seen that kind of correlation. You may get more services, but I don't know that your life's really. Yeah. What you want it to be. But on paper it looks good. And so again, it goes back to that whole compliance and I think to what Julie was saying to you can pull any of us providers and we'll tell you we do person center planning.

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Marian Frattarola-Saulino

Some of us will go as far as to say we provide individualized supports. But when you actually talk to somebody who's accepting support from that said provider, I'd love to know the percentage of people who go, yeah, yeah, I get what I want, when I want it from who I want, and more importantly, when I don't want it.

00;25;16;18 - 00;25;25;02

Marian Frattarola-Saulino

You don't make me take it well, I don't know the person coming through my front door. I have the authority to say thanks, but no thanks.

00;25;25;02 - 00;25;51;27

Julie Bershadsky

Yeah, this is why. This is why you and I do talk a lot. Because, this is kind of what I was just jotting down, like, you know, this whole self-direction model service delivery model, kind of. There's two things here. There's the authority piece, which, you know, people have the authority to direct their own services, hire or arrest, have full control.

00;25;51;27 - 00;26;32;13

Julie Bershadsky

Right. Like that's what we want. It's a good thing. But then there is the responsibility piece that comes with that. Because you are employing people, you are now an employer. So you are responsible is as an employer for certain things, like because you are right, you are responsible for somebody's livelihood now as well as an employer. And we do not I, I, I am saying that we all too often do not provide people the support that they need to fulfill those responsibilities that come with having the authority.

00;26;32;13 - 00;26;49;26

Julie Bershadsky

You know, like, ideally, we should have this whole thing figured out where there's the authority will support you in exercising that authority, and here's the responsibility that comes along with it, and we'll support you with fulfilling that responsibility.

00;26;49;29 - 00;27;06;25

Marian Frattarola-Saulino

And your direction. I mean, that's that's that's the essence of the supports broker role. But, you know, states have a way of saying, well, we'll do it this way, but they're not allowed to do that. And then you have some states that don't allow for it, don't have that service written into the waiver. And they'll tell you we don't need it.

00;27;06;29 - 00;27;35;10

Marian Frattarola-Saulino

We don't have any intention of writing it in. And meanwhile people are out there like, I need I need some help. The bottom line is it's, you know, agencies have HR departments, payroll departments. Right. But for some reason, we're afraid to entrust people and their families with the funding. Okay. So we have fiscal intermediaries, you know, but why can't people just have individual budgets?

00;27;35;10 - 00;27;57;00

Marian Frattarola-Saulino

Here's what it is. You have the authority to spend. Here's what you can spend it. I mean, it it really could be a lot simpler. And I'm not saying that doing that wouldn't come with its own set of problems. I mean, that was a lot of what happened during the Robert Wood Johnson Foundation projects is people did have access to a budget, the use of the fiscal intermediary.

00;27;57;02 - 00;28;19;26

Marian Frattarola-Saulino

And yeah, I'm sure things didn't always go as planned or in the in compliance. But instead of figuring that out, now we're into these other systems, many states of course fee for service. And now we're trying to say, okay, well, this is about freedom and autonomy and control and the system, the financial side of the system doesn't understand that language.

00;28;19;28 - 00;28;40;14

Marian Frattarola-Saulino

So we end up spending way too much time, in my opinion, on figuring out the compliance and the billing claims, substantiation, language like that. The why are we even having to say this? Because it can be overly complex, which is why I think brings us full circle to how we we started.

00;28;40;17 - 00;29;06;19

Janet Stewart

I wanted to come back to you, B.J., when you think about, you know, we've just been through this, few months process of gathering, writers to talk about self-direction. And you've written your own article as well as the the joint lead article for our issue. As you come away from this experience, what is it that you would like for people to know, having come away from this issue?

00;29;06;19 - 00;29;13;21

Janet Stewart

What what are you what's the key thing you'd like to, or the key message you'd like to get across to people?

00;29;13;23 - 00;29;38;11

BJ Stasio

Well, the key message I would like to get across to people is don't be afraid to take the journey. Yes, the journey will be bumpy. Yes, the journey will be rough. Yes, there will be roadblocks. But if you don't take the journey, you might be denying yourself the greatest opportunity of your life, if not one. Many opportunities.

00;29;38;11 - 00;30;03;18

BJ Stasio

And that's what the. That's what has happened to me. I've taken many journeys I never thought I would take. Many, many things have happened to me in my life and without the opportunity to experience things, growth wouldn't have happened for me if I would have stayed in the box the system expected me to. So don't be afraid to take that journey because the journey belongs to you.

00;30;03;26 - 00;30;13;18

BJ Stasio

Or if you're supporting someone as a family, it belongs to you guys as a family, to help your loved one, to experience that journey for them.

00;30;13;20 - 00;30;43;17

Janet Stewart

I just wanted to thank all three of you, not only for just, being here today, but also for the time and attention and great care you took with putting this issue together. It was a huge learning experience for me, and the people that I met along the way were fantastic. So thank you very much. I really appreciate all of your time and attention to the issue and to the work that you're doing.

00;30;43;17 - 00;30;57;02

Janet Stewart

It's just all three of you are doing some incredible work in this area. So, so thank you for that. And, and that's all I had.

00;30;57;04 - 00;31;07;17

Janet Stewart

Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email icipub@umn.edu

00;31;07;19 - 00;31;31;09

Pete McCauley

Our show is co-produced at the University of Minnesota's Institute on Community Integration by Impact managing editor Janet Stewart and ICI media producer Pete McCauley. Skyler Mihajlov is our editor. Graphic designers are Connie Burkhart and Sarah Curtner. For more information on the Institute and all of our products and projects, please visit ici.umn.edu