Towards a Community Support Approach for People with Disabilities with Hanns Meissner and Pamela Mansell

Good Things In Life Podcast episode 108 thumbnail with Hanns Meissner and Pamela Mansell
Listen & Subscribe On:

You can listen to this podcast episode on iTunes or Spotify.

Even when the world storms around us, we can find peace and a sense of purpose in the blue spaces that live at the centre of the storm. That is the basic principle behind Creating Blue Space: Fostering Innovative Support Practices for People with Developmental Disabilities, Dr. Hanns Meissner’s groundbreaking book that suggests we have all the tools we need to innovate community support for people with disabilities. 

In this podcast, I invited Pamela Mansell to serve as guest-host. Pamela interviews Hanns about what that blue space is and how we can find it. Hanns identifies four basic models of disability service—the institutional model, managed-care model, person-centred approach, and community support model—and talks about how although we’ve tried to transition from the abusive institutional models of the past to more progressive and collaborative community support approaches, the transition hasn’t always been seamless. By understanding how blue space works and how to wield it, people with disabilities and their advocates can break the boxes they’ve been placed in and assert their right to a meaningful place in their communities. 

Hanns Meissner, PhD, is the former Chief Executive Officer of The Arc of Rensselaer County in Troy, New York, where he worked to promote the inclusion of persons with disabilities in all aspects of community life since 1979. His doctorate is in Ph.D. in Organization Development and he is interested in promoting social innovation as a way to bring forth vibrant diverse communities at the local, state, national, and international levels. He is the author of two books about disability service innovation and is the recipient of the 2018 Excellence Award for Leadership in Person-Centered Thinking from the NY Alliance for Inclusion and Innovation, as well as the 2017 NYSRA Adrian Levy Professional Leadership Award. Over the years he has assumed leadership roles with such groups as the National Rehabilitation Association, New York State Rehabilitation Association, a local Community Services Board, the NYS Capital Region Council for Young Children with Special Needs, and Partners of the Americas. He has also served on numerous NYS government committees, councils and task forces. 

Pamela Mansell has over 20 years of experience working in a range of social care settings in Ireland and has held senior and regional management positions in the sector. In 2016 she founded Future Solutions, a coaching and consultancy business. She teaches on the Supported Self-Directed Living course and works extensively with organizations that are working towards the implementation of high-quality individualised supports. She has designed and delivered leadership and change programs for services involved in de-congregation and organizational transformation. She is accredited in Executive Coaching and Personal Leadership, qualified in Integrative Psychotherapy, and skilled in management, strategic planning, leadership, and organisational change. She continues to support, coach and mentor families, and people receiving services, in their pursuit of a better future.

Thanks to Pamela and Hanns for an insightful, engaging conversation that helps paint a picture of just how proactive people with disabilities can be in guiding their own path through life. 

Pamela  (00:00):

Apart from anything else, it just offer them something concrete. In which to work through some of the information that hadn't made sense for so long. Um, so the sitting in big boardrooms with many representatives from different organizations at the same organization, but over different many, different organizations. So like any family could, could have had this experience with maybe four or five organizations at this point. Um, and while they were holding strong with a vision for just the good things in life for their son, or their daughter, it was, it was helping them to work through those dimensions that you talked about, um, that helped them to make sense, Oh my God, that's why it's not working.

Speaker 2 (00:52):

[inaudible]

Genia (00:53):

Well, hello there I’m Genia Stephen.Usually I'm the host of the Good Things In Life podcast. You just heard Pamela Mansell a part of her conversation with Hanns Meissner. Pamela and Hanns graciously recorded this guest episode. In this excerpt, Pamela was talking about the all too familiar experiences of families wondering why the heck it's so hard to get the flexible and individualized and responsive supports they want. So that their son or daughter can be well supported to live their own life. Hanns will talk about Blue Space, the center of the storm and opportunity to seek the good when all around us, there is chaos and destruction. The Blue Space also represents the clarity that we can gain, even when the world storms around us and says that families who take on the system or on a hero's journey, it's always hard. It requires creativity. It demands that we shake ourselves up so that we can get unstuck. It's scary, but also worth it. Let's get started

Pamela  (02:04):

Everyone and welcome to The Good Things In Life podcast. My name is Pamela Mansell. As you can hear, I'm not Genia Stephen. But in chatting with Genia last year and in supporting the Good Things In Life Community, I asked her, how could I help? And so here I am hoping that I can do her justice. I feel very honored to be here today with you all, to have the opportunity to introduce you to my first guest and also to be a part of this growing community of The Good Things In Life. So let me introduce you to Hanns Meissner. He's the author of several books, one in particular called creating Blue Space for which we'll be chatting about today. Hans is a PhD in organization development and as applied much of what he has learned to his former role as Chief Executive Officer of The Arc of Rensselaer County in New York state. That was what I had to practice there and is currently an independent consultant. And he is here to tell us some more about creating Blue Space and how this can, pre-create it not only by organizations, but by families and individuals alike. So thank you very much for joining me today, Hanns.

Hanns  (03:10):

It's wonderful to be here, Pamela. I really look forward to our conversation.

Pamela  (03:14):

Thank you. Um, so yeah, so just to maybe give you a bit of context as to how our paths crossed and how myself and Hanns might know each other and why maybe I thought it could be a nice idea for you to hear some of the great information that Hanns shares and create in Blue Space. Um, I just let you know a bit about it. So I reached out to Hanns back in, I think it was 2018 at this point. Um, and I had been introduced to his book, um, some years before that. And at that time I was waiting through systems within the disability sector. I'm wondering how can this system support a person to live a good life? At the time, I had a super mentor who, and I was studying social role valorization theory with hopefully did more. And she had introduced me to your bookends. And, um, I was trying to use that to help me make sense of what it was that was going on around me, um, which was extremely confusing. Um, so maybe for the listeners here today, Hanns , um, maybe you could start by telling us, cause creating Blue Space is just such a fabulous title. Um, and I know from the book that it, it means something. And so maybe you could just tell us a bit more about that.

Hanns  (04:22):

Sorry. It's, it's great that you just said. Um, it helped you make sense of things, your experience as a practitioner in the field that serve people with developmental disabilities. Uh, as you mentioned, also, I worked for The Arc of Rensselaer County for many years, uh, starting as a Direct Support person and moving up to Chief Executive Officer after a number of years. And during that journey, uh, I was part of a very passionate group of people that were interested really in moving away from group-based services, uh, group homes, uh, shelter workshops, day programs that had many people contained in their building. To a place where, uh, we supported people individually in a life that they valued and, and connected them to, uh, contribution and participation and, uh, and valued roles. And during that process, of course, we were a traditional program. We were set up traditionally to run those group settings.

Hanns  (05:30):

Uh, we had to move somehow out of those group settings, uh, and figure out the transition. And during that time, uh, we realized how difficult it was. And that there was a lot of, um, contradictory, uh, uh, kind of messages coming from the funders, uh, that were much more, the mechanics of the funding was much more supportive to group homes. It was very difficult to get approvals, to move away from group homes, split them up into individualized supports. So, um, people mourned a lot about the lack of progress feeling stuck on the journey to individualized supports. So, uh, I realized, uh, that people's experience was deflating them and, uh, and they often felt actually that the world around them was really unfriendly. And you could also say, you know, uh, much about marginalization of people with disabilities society, societal, uh, the making developmental disabilities, a medical problem versus a social problem or social issue.

Hanns  (06:47):

Uh, the idea that funding was, uh, more supportive of group homes, uh, and, and, and not available for self-direction. I could go on and on it in terms of all the factors in the environment that made that a work of transforming services, very difficult. And around that period of time, I got turned on by an author, a philosopher named Phillip Haley. And he, uh, was trying to understand, uh, w uh, his role in World War ll, uh, as well as, uh, all the cruelty in the world. And he had noticed that, or at least saw the world is mostly a problem, uh, in terms of, uh, negative human action. And, uh, but he did see pockets of places where people were doing, uh, ethical moral action. Uh, and I could go on about that, but, uh, I just refer you to his book. I have the hurricane in which he talks about, uh, coming up with a metaphor to describe the experience. Uh, which is, uh, the hurricane a at one point, uh, noticed it outside his door, ripping up his favorite oak tree, big old oak tree, lots of destruction in the end, in his yard, and then noticed in the middle of all that swirling destruction and craziness was, uh, was blue.


Hanns  (08:15):

Uh, the eye of the storm where birds are flying around and life is wonderful. And he re you know, that was his, his way of understanding that the world is generally can be very destructive and very cruel. But even within that cruelty, you could act morally and ethically because there was space to do it. And I thought when I started using that metaphor with people that were struggling to make it work for people with disabilities, uh, it did not minimize how tough the environment was, how tough the job was, uh, and acknowledged how, what the struggle. But it also gave people a sense that there are spaces that you can do really good work. And so I used, I use that metaphor in the title, creating Blue Space. I now recognize it. It's not only something that is external to you. You know, if you're a leader in an organization, you can create environments that help the people do innovative things, sort of protect them from the general mainstream, that isn't as friendly that maybe you can find, you know, facilitated spaces.

Hanns  (09:36):

You can do that, but it's also an internal condition where you open yourself up, you'll open your mind up, you'll open your heart up, open your will up to new possibility without being cynical or judgmental that you relate in, in a, in a less hierarchical way, a more person to person. So it's an internal condition that needs to shift as well. If you're going to engage in this work, because, you know, we're a product of our culture surrounding, uh, past, uh, and so forth. So to be able to open self up, you have to create the blue space within as well, not only without, so that's basically what that all means. Yeah.

Pamela  (10:20):

And, and it certainly, for myself has been, um, just a wonderful even image to have my head in terms of an, all of the, those other commitments and destructive factors. Like you talked about our, our play, that there is a possibility for space, for something that's more positive to be created. Um, and, and it was, it was the thinking of that and using of that and talking it through, um, with family members who I have the pleasure of being able to kind of journey alongside both themselves and the individual, their son, or their daughter to when we're discovering how to really enact citizenship, how to really think through what it is that they've got to offer. And as you've described, in terms of that sense of feeling deflated and unfriendly world being presented to them, um, particularly around the system of what it is that's being offered and continually offered in the same way, um, with very little lean towards partnership and that kind of power over dynamic being involved in it. Um, it just became such a daunting process and there was so much energy in, in just struggling to, um, I suppose, problem solve each day within the exact same conversation that it felt like it was grown tug day for them.

Pamela (11:42):

Um, and so when we kind of, um, I taught about this and I thought about creating blue space and, and although, um, I know that the, when you wrote it, it is with regard to organization, there's so much in it. That's so helpful to thinking through that kind of partnership. And so I brought it to some of the families that I was working with. And, um, like I said, they're wading through the swamp of services, bonds, and just continuing to be frustrated what relation to what was being offered. And even when I was chatting with Genia, um, and I was kind of thinking this through in terms of the podcast and what people really might like to hear and would have great benefit in she herself was asking that even though her son's vision is really clear to everybody and there's many podcasts around us, um, she can still be offered the same solution, that same group activities, even specialist service seem segregated options.

Pamela  (12:35):

Um, and even though the two of us I'm from Ireland and Genia’s in Canada, um, and we're in different countries, the, the, the similarities were just stark. Like we're continuing to hear the same thing. Um, and so one of the families, um, I asked, you know, what, what was it that creating blue space when I was sharing some of that information with you, what did it help you to think through? Like, what was helpful about it? Because they had told me it was. Um, and so one just says, you know, families just get landed into this. As we advocate alongside our family members, it helps to see the structure where we are and where we could go with partner agencies, but it also gives me hope and strengths. Um, and so she's describing there, um, your really helpful way of thinking through the evolving way in which we approach supports. Um, and, and we can think through, um, in this way, if we start to pay attention to us in a different way, um, so for, for the listeners, maybe you could kind of walk them through that kind of evolution of the systems of care and supports that I had shared with the families.

Hanns  (13:42):

Sure. Well, you know, when you, when you mentioned it that way, it reminds me of, uh, 2 functions of these, you know, creating Blue Space and some of the frameworks in it. Hey, they're there, they're helping people make sense of their world, like what's going on because it can be overwhelming. And two, I related to, as you know, Pamela, um, I go out in the woods and get lost, you know, um, and, and, uh, the, the experience of getting lost in the woods, even though it's more fun for me than a family member trying to navigate human services is that, uh, the first thing is when you begin to get disoriented, which is what the, I think the experience is, A, I got a vision B, you're not listening to me. And I don't know what language you're talking about coming. It's not, you're not coming together with me is that I have to get to a point where I can orient myself.

Hanns  (14:44):

And usually that means going to a higher ground to see what's around me, you know, moving out of the thicket into spot where I can see. Oh, there's that mountain there's that road, there's whatever. And that's what the frameworks do. They help you to get perspective of where you are in relationship to the social situation that you're in. So the evolving, uh, systems models are, um, are, are an attempt to develop an orientation map about our experience with, uh, supporting people with disabilities. It could be, these are actually, um, models, uh, that evolve over somebody's work around health care, and the experience of people in healthcare system situations, their own health care. And so I took that a modified it pretty extensively for the evolving chart. So I see that I look back, uh, 60 years approximately to the institutional response to people with disabilities.

Hanns  (15:56):

So I, I kind of see four dominant ways of approaching it. Then, for the sake of the chart, they become sort of pure models, but as we life isn't that easy, it's unexplained, it's much more messy. And we actually find ourselves maybe in a mixture, uh, in those models, but I think they help make sense. So the first month, so the f firstly, you have, uh, an institutional model. We all know that large institutions, uh, were developed initially, uh, to be helpful. not to be, uh, snake pits, uh, which they had become, uh, not, uh, probably now in retrospect, we think that was probably not a good idea to do it that way. But you start with an organizing principle, uh, when you, when you develop design a model and in with institutions, it's about a response to a population. So everybody with developmental disabilities, the heck with individuals, it's, uh, it's like everybody with, you know, um, diabetes, you know, or everybody with developmental disabilities, this is what we're going to do for them.

Hanns  (17:15):

And so it starts with that thought that we're going to look at a group of people and, uh, and organize our response. And so some of the thinking was we, as we know, take people, put, you know, find nice country settings, do a big building, kind of like a hospital. Everybody will be taken care of in the hospital. Everybody's the same they'll have, but as we know, uh, that didn't work so well. And along with the organizing principle, I located or identified basic dimensions that are inside that model and each one of those. And they're probably, they're probably many more. Um, but, um, I, I found the, I think I located the nine most important, and I won't go through all of them, but some of them are like this. Probably most importantly, uh, what is the, what is the experience of the person with the person that's providing the service. And within the institutional model, it's the expert, it's the guy that's going to, usually some kind of medically oriented clinician that does an assessment and then recommends treatment and then things flow from there.

Hanns  (18:36):

So then the, the second dimension is what's the experience of the service or support by the individual. And in the case of institutional model, it would be, I'm a passive recipient it's being done to me. And then, you know, you can, you could float through it and you end up with kind of in that experience and that model, which is called a care model. We, we look at a bunch of people and we're going to care for them. Um, at the end, we end up with, you know, certain outcomes, Uh, like, um, a roof over our head. We get programming, you know, sort of speak. Uh, we know that nursing homes that, uh, the important thing is that somebody has a roof over their head and they get their basics and they get personal care. And where are the institutional models started okay. With that.

Hanns  (19:32):

And then does, you know, went haywire and couldn't support everybody. And then all those outcomes, uh, you know, got, um, not met and that's okay. And out of the, sort of that, that crashing of that model, people started saying, well, it became expensive and a pic and the outcomes weren't achieved. And, and there was abuse, uh, a new model surfaces. I call it the Managed Care Model because, uh, uh, somebody has, is now managing across different needs that you might have clinically. So, so some of the stuff that started in institutional model is retained in the Managed Care Model, but it looks differently. So now I don't go to one place to live, play recreate, or whatever. I now am in a group home shelter workshop day program. And, and, um, interestingly enough, we still have the clinician doing an assessment and recommending, you know, what happens.

Hanns  (20:45):

The difference here is the experience of the services split, and the locations are split. But a lot of the professional relationships we have, although benevolent are remain the same, there's still a sort of a sense of that. There's an expert and you know, more than I do. Uh, but, but the, but there's a new twist to it. You've got to satisfy me, now we have satisfaction survey. So I'm a consumer, not a, you know, a patient or a client. So now I'm a consumer. And now, uh, now what happens is that, uh, the outcomes that we get are that w some of the similar ones, personal care, roof over your head, but, but we're also guaranteed that the service will be managed in such a way that it's cost efficient. And that the services talk to one another because we split them apart. So we have to have a care manager to help us with all that, because it's all confusing.


Hanns  (21:52):

Now, it's all split apart, not under one roof. Well, we know that people still retain a lot of the experience of the service as clients and passive recipients. So there's a lot of, you know, especially, uh, over the years, there's a lot of interest in people saying, Hey, listen, I'm, I'm a human being. I want to participate in the community like everybody else, but I can't. A lot of that comes what we would consider a person centered approaches. I call it Integrative Services, uh, and, or Supports. Now the title changes titles goes from a Care Model to a Support Model. And that's because the relationship between the provider and the person is more in partnership together. And the organizing principle obviously is really around, you know, you as an individual, your capacity, I view you as capacity oriented. So it's kind of interesting that it now begins to show up.

Hanns  (22:57):

And really, uh, in that model, we also recognize that the community is all still separate from us in a way, and we need allies on our circle to bridge us to community work or community experience. We need, we need that, those facilitators, those allies. And that's where individualized supports show up wrap around services and supports, and a relational change between the person and the provider becomes a partnership moves it, becomes power sort of shared. Um, and the outcomes now, uh, begin to shift. I begin to be more in the community, so to speak, uh, uh, employed, maybe, uh, maybe an apartment versus a group home. Now, the vision, which probably doesn't happen as much as we'd like, we still realize that there's the experience of the person with disabilities and their allies. And then there's the community and the community supports model, the target of change is the community.

Hanns  (24:15):

It's not the individual. So it's sort of a mind twisty kind of thing, because we're always talking about how we're going to get people into the mainstream. And in the community supports model is how it's the problem set is more or less, how are we going to widen the mainstreams boundaries to include people of diverse presentation? And of course, that's a huge question, not only for people with disabilities, but any marginalized group of people, and that's a huge struggle. It's, that's where the blue space really makes a lot of sense, because, you know, we're really going against the grain, uh, communities simply aren't except in rare cases like Phillip Haley talked about pockets. That most of, most of those, the community isn't friendly to that concept, is mostly about you adjust to me. And so that's the, so what people experience in those four models is that sometimes people have visions of a relationship that's evolved into a support model, but most of the messaging and the experience still continues in those care models.

Hanns  (25:28):

So you see a misalignment between a person's evolution, personal evolution and, and, and, you know, providers will say also because it's popular these days to say I'm person centered and you're like, wait a minute. That, that just doesn't feel right. And you know, when you have language, language is the first artifact of revelation. It's not the only one because you can have language that's good. And then under, and then the practice is not good. So language is important to a certain extent, it reveals something, but, you know, most organizations will say, uh, talk about an intake admissions process when they do they're operating in a care model. And it's very difficult to get away from that. Almost all services are, are, uh, initiated through an assessment process and, and th and it gets more and more involved and there are prescriptions and there, and in a way they're kind of abusive. I mean, we have one here in New York state. That's, I mean, it's like 1400 items and somebody, somebody can go as far as, so what kind of toothpaste do you like? And the next question could be, so have you experienced any childhood trauma? I mean, and not manage the response at the other end? Oh, yes. No boxes. Yeah. Yeah. But they call that person centered.

Pamela  (27:06):

Absolutely. And, um, when I was using this framework with families, um, apart from anything else, it just offered them something concrete in which to work through some of the information that hadn't made sense for so long. Um, so the sitting in big boardrooms with many representatives from different organizations at the same organization, but over different many, different organizations. So like any family could, could have had this experience with maybe four or five organizations at this point. Um, and while they were holding strong with a vision for just the good things in life for their son or their daughter. It was, it was helping them to work through those dimensions that you talked about, um, that helped them to make sense, Oh my God, that's why it's not working. So they could go through on, and the family would absolutely know and understand that this was not working for them.

Pamela  (28:11):

It was not working for their son or daughter. Um, there were some big issues that were presenting themselves and when they try to kind of alleviate some of the issues with some conversations that they might feel were constructive and were really what they were asking for was a sense of partnership. Um, so when we went through that framework and we kind of looked down through how it was organized and how a system, how a system or supports were being delivered or experienced for their son or daughter, it very clearly started to line itself into the managed care model. And so one really, um, it was definitely the one that, um, I remember thinking this is just so helpful, um, because we had a conversation with, with between a family and I was kind of facilitating a space between the family and the organization and the person themselves in terms of really talking through how they were going to achieve this vision.

Pamela  (29:10):

Um, and it came to the point where the organization said, this is what we do, but this is what you want. And there were two different things. And so, like you said, the model of care is heavily invested in, in, in probably the majority of the countries in the world. Whereas that model of support of wrapping around somebody, of really paying attention to how do we enact their rights as full citizens, isn't getting as much investment. Um, but yet that was firmly. They family could see, no, we need, and we were looking for integrative supports, but yet you're offering a managed care system. And that is why where we're talking different languages and it's, so it just made sense to them. And they themselves, I remember chatting with severed efforts and gosh, there was like a sigh of relief because it was no longer because of the family or because of the person.

Pamela  (30:05):

It was just that this is just a different model. And this is the one we're looking for. We're looking for a system that supports the person at the beginning, um, and that as a product or a group or something to be kind of intertwined with all these other huge, um, systems that they have in place. So, um, I know for sure that that has been something that's been so very helpful. And the other one that I can remember when we talked about was fine. You mentioned just starting where you are that knowing that you're within managed care are knowing that the model of support that you have is integrative support, but yet you still feel like that there's innovation that could happen, or you still have a direction to go. It's just getting really clear on where you're starting, because that's, then how you figure out where it is that you have to get to.


Genia (30:57):

Hey, I just wanted to break in here quickly to make sure that you know, that we have a free Facebook group. The Facebook group is an awesome place to connect with other parents, just like you, who feel really passionately about helping their kids to build fulfilling lives. And it's also a great place to connect with other people who are listening to this podcast with you, and who can have really good rich conversations with you about the topics that we cover in the podcast. You can ask questions, you can share your observations. You can ask for some help thinking through something that you might be facing.  To find the Facebook group, go to Facebook and search for The Good Things in Life for Kids With Disabilities podcast group. I hope to see you there.

Hanns  (31:47):

Well, you know, to go back to the metaphor of none of this is for the faint hearted, by the way. I mean, you have to choose between being aware of the situation and just struggling with it. Um, because you know, if the, if the dominant model is managed care and you want something else, it's going to be not an easy, uh, not easy. I mean, so I don't minimize, uh, how, how that, um, that journey good call, I call it, you know, I borrowed Joseph Campbell's terminology, the Hero's Journey. The people that are family members and individuals that choose to go beyond

Hanns  (32:40):

The norm of the dominant model are on a hero's journey. They're letting go of something and diving into a situation that's creative. Yes. But also a little bit, you know, scary. So I, I, you know, so go back to the bush whacking model, I'm in the middle of the woods. I go find a spot. There've been times that I'm thinking, Oh, I'm really near ro, isn't that funny? That's great. I'm almost at my car back at my car. That's not, that's not going to be difficult for me. Or I like, Oh my gosh, I got along. I can't believe that's how far I got. And so I think that, you know, so, but orientation and awareness, my assumption is that it's a good thing, especially, and I assume the family members that are frustrated have, you know, really I've already said I'm on a journey. Yeah.

Hanns  (33:41):

So they sort of, well, if I'm on a journey, orientation awareness will be two really good tools or capacities to continue to develop. So, uh, I think that's, that's it. The, um, one, let's say you, you have, uh, you're, you're now moving into the territory of actually designing, uh, an experience that's different than the container that you're in. And that's way people with developmental disabilities often refer to, you know, I'm in the container of a shelter workshop or a group home. In fact, I mean, I, I used to talk about blue spaces creating a container. And then somebody said to me, well, maybe you shouldn't use container as a word, so space. Yeah. So I, I started thinking about, well, individualized supports might be, uh, emanate from three different orientations. It's another framework, uh, try to understand a place to start. One is that I'm in a group home.

Hanns  (34:50):

And, uh, I want to be able to be more, I want to move more to individualization because I can't move out right away. So, so I caI, I refer to that as working within the box. Uh, and you're, you're really manipulating a few things you're, uh, you're manipulating, uh, you know, choice. Uh decision-making uh, um, I'm trying to remember what the other ones were, um, uh, personal space and ownership, um, and so forth. So there are some features that when you start playing around with design, these are the main features that are, uh, emanate and get the more we are in power, the more choices we have, the more decisions we are, part of, more personal space and so forth. And I suppose the other one is outcomes of some sort, whether it's employment or valued roles or stuff I have to, I'm not recalling lately.

Hanns  (35:57):

And so now I'm in my group home and I, I want to talk to my manager, that's in the group home and the family families might be part of it. They can talk about what in this environment, can we make more geared towards my interests? And, uh, I guess there's a ways to do that, you know, that are tweaks. And so we have to know the person's interests more, and maybe we decorate a room. Maybe we have an individual bedroom. I mean, for years and years and years, and it's still the case with many providers that it's a dormitory type situation in a group home. So you're really like it's college, you know, till the day you die, you know? And, uh, and maybe the first move is to figure out as a provider is how to have individualized rooms, so I can close my door and it's my bedroom, and I can decorate it and so forth.

Hanns  (36:52):

So, so it's kind of like a light touch of individualization, individualization light. Then there's the next stage, which is, uh, now the organization has to be in the more active, much more active. And this one is to take the, the box of group living and split it apart. And that's what the agency that I was part of was really good at. I mean, if you can talk about being good at it, when you were the ones that did it, the most, we take a group home and we would, we would plan out how much money was flowing into it. And then we think, and then talk to individuals and if the family was involved them and talk about, well, how can we have somebody live in their own place? And, you know, we had to work with the funders around this, which confounded them by the way, it wasn't easy.

Hanns  (37:53):

Um, so we did two things. We stopped developing group homes. Uh, early on, we had individualized bedrooms and then we started breaking the root gr uh, group homes apart. So there was sort of an evolution of, you know, arriving at the fact that even though we, the container, we were individualizing a bit really, we wanted people to have their own experience and we're going to take this resource and transform it. And then the, then the fourth w the third, uh, level of ind, probably the highest level, because it really big, and this is where self-direction is supposed to be going not. And of course the rest of the world is somewhere else. So self self-direction, uh, is, uh, is, uh, not always aligned because it functions still within a system that is indoctrinates people around group living and roles that emanate that, and the assumptions that emanate from it.

Hanns  (38:56):

So in this case, I'm in the purest state, it's called working outside the box, which assumes that there's a box and that I am at the no intake. The intake is really now the function of the person and their allies. They intake the, the service provider. You know, you come to my house and talk to me and I see if I approve you, it's a whole different orientation and a whole different relationship. And you hope that it's partnership based. You hope the hierarchy doesn't reverse itself. Because people ultimately, when they get into this top po the power over shifts at somebody rebels at the bottom, we just reverse it. And we've seen that happen. This is like s, I'm up on the top. And I get to make all the decisions, no, in order for self-direction to really work, it has to be a collaboration and a mutuality, more evolved relationship, same way with this model of community supports. It's not about, you know, getting somebody to think about how they're going to meet the norms of the community. It's about the community and people talking about a different community. And it only happens through collaboration, not forcing things. What was the whose song? Uh, won't get fooled again, you know, same old boss, you know, the revolution happened and it's the same old boss again. So we don't want to go there. We want a more evolved connection. Yeah.

Pamela  (40:34):

And, and, and that need for relationship in order to evolve this level of kind of core production and core design, and how do we work together and meet needs a different type of listening. And sometimes, you know, there are people who are just listening for what is confirming to be the right thing to do, which is this systems approach. Because it's what they've been brought into. Um, and so one of the other families, um, that I work with would be absolutely within the kind of integrative supports model and, and this lady would hire her own staff and they will come to our own home. And so she would have a very innovative support model, very lonely within that support model I might add because it's not, it doesn't happen all that often. And, and, uh, certainly needs a lot more investment if we're going to kind of switch things up a little bit and move away from that care model. But what, what she was finding and what her family were finding, where the strongly held by people that were kind of embedded in that care model, whilst they were saying that they were parceled centers were still showing off, even in her home, even though she was self directing who was going to be, and doing great interviews.

Pamela  (41:46):

And when it actually moved into the actions speaking louder than words, those are unconscious, I would imagine assumptions were starting to play out. And so we kind of chatted through that, um, you know, innovation and, and how you set out a path to shift away from those deeply ingrained thought,s and really engage in that world where you described earlier on you have that open mind, open heart and open wheel for something new to emerge. For neither knows what direction is going to go, but there's some very particular ways in which we're looking at this, which is that we come to this world with gifts and capacities in which to share with our community, and how would we move that forward, as opposed to we come to this world with some, with, with something that is affecting us and stopping us and we're labeled with. Um, and so there's a, there's a struggle there in terms of really, um, getting into the conversation, the gentle conversations that allow, allow this to be on earth.

Pamela  (42:50):

It allow the, I wonder about those assumptions. I wonder about how we can engage in much deeper listening, which offers you a different perspective to what might be possible for me. And I'm saying this in the, in the seat of the lady that I'm describing, who hires her own staff. Um, something that, that allowed her to do when we talked about, and, and you mentioned it inside in terms of entering the you in terms of the u shape and, and, and you theory and how we kind of dig deeper to get into more robust conversations around on our thing, those assumptions. And really wondering about how was that actually playing out in the kind of supports are offering me, which is kind of the next dimension, even if you've got that, um, individualized support and it is seen as innovative, it's still so strong, that care model is the system is so strong that it's after. Um, the experience of us is since showing up for people all of the time, even with, even with staff, that's coming in and out of their homes.


Hanns  (43:52):

Well, therefore, you know, um, we recognize it as a, um, there's a term called wicked problem. It's a problem. It's a socially derived situation, which is immune to simple solutions. Um, and therefore it's not wicked as an evil, but wicked isn't complex and interactive means that it, you know, it's always flowing. The interaction is always flowing. The situation's evolving, it plays off of each other. It's not predictive. So the best you can do in a situation like that is either do something decent that moves you in the right direction incrementally, or you can make it worse, which we do with a lot of, uh, systems interventions and social services. We reconfigure everything and think, you know, and all of a sudden the situation is it doesn't get any better because we think we can somehow architect our way out of this mess. So that's where the whole concept of social innovation comes in.

Hanns  (45:07):

And the concept of you mentioned, the youth theory, you process is this is, is a social innovation, isn't product information, innovation, like a new iPhone, it's a new relational connection. And they're saying you got to get diverse people in the room to sort of unlock them from their traditional roles and perspectives to think through where they want to be going with this situation. And, uh, I think, you know, my second book expanding bloop space attempts to offer up at least one. Um, I'm trying to process that, uh, brings people together to think through how they approach this individually. They, they, you know, look at where they are and the evolving, uh, systems model. Um, there's, uh, they try to look at their listening, like you're saying, uh, instead of listening from our, uh, our stuck perspective, we, we try to, uh, hear another point of view, uh, experience another person's experience.

Hanns (46:24):

These are all perceptual shifts by the way, because we usually operate from our own bubble and we see that happening politically, these days. People, and they don't get together on my, my way of thinking and your way of thinking. And I can't stand the way you're thinking. And so in order to break that somebody, these people that the step us have to step away from our bubble for a second and see that there's another point of view might not agree with it, but maybe it's intriguing. And, but it can't stop there. You have to move into people's experience and human beings have a unique ability to project themselves into other people's experience through deep listening, and maybe even, you know, doing exercises, uh, for example, uh, one exercise that shifts perspective HeartWise is suspended day or a week with, uh, with a person you support and not support, really support them, but shadow them. And their life and see where are they?

Hanns  (47:30):

Where are the limitations? What are you viewing in terms of interaction and so forth? This gets you a more empathetic response to that, you know, and then the open will is the courage to release yourself from your baggage of role orientation and fears and, and meditate on, well, what's my higher contribution here. Not simply be reactive. A lot of times we are responsive and reactive to funders to expectations. We're not sort of, what am I, what do I want to contribute? Always in terms of something bigger than myself, this is where the last, you know, the last model comes in and community supports is that ultimately it's not just about one person, it's about beloved community. What do we want to create on this planet? And that we channel our work together, not only for ourselves, but for the larger community enrichment. Cause it doesn't, this work doesn't work.


Hanns  (48:36):

If the community stinks, we're all stuck in our own bubble. Yeah. So, you know, it just so happens that my work found its way with people that had a label, it could have been with somebody else, but I'm carrying out my purpose in relationship to, uh, uh, addressing marginalization through, through people that have that particular label. It could have been with people of color, could have been people who were formerly incarcerated. It could have been a whole bunch of options. Uh, here I am with this. I don't think what we're talking about here is exclusive to, to our families and people with disabilities. I think it's a marginalization question and ultimately a community question and we've developed what we call solutions for different populations. But in that process, we have, we have a dumbed down the community and ignored the individual at the same time.

Hanns  (49:43):

Yeah. So it's this tension between individual and community that we're trying to deal with. We're not trying to develop a bunch of ego driven me, me, me, people, because we're individualizing services where we're thinking of both. So it's like somebody in the self-advocacy community here in New York State, probably not just here. Talks about me to we that language, which I think is very attractive. You know, it's not easy to me. It's both, you know, how do I become, I merge my higher self me to and connect it to we? Yeah. So that's where social innovation comes in. The relational shift comes in there. And so when we begin to realize all of that, it becomes a much more powerful experience, but it's out of the norm. Yeah.

Pamela  (50:38):

And, and for many of the people listening today, um, they have followed and are part of The Good Things In Life journey for, for probably several years now. And, um, it's for that exact reason in terms of finding a community whereby this feels like, huh, me wanting this vision and my family wanting this vision. Um, seeing somewhat normal in here, I don't have to keep explaining myself, but when I'm out there, um, sometimes it feels like I might continue to have the same old conversations and get, get the same raise eyebrows. Um, and I know for some other families that I do a bit of support with that that's, um, that's what they would feel. Um, but I suppose to, to kind of, kind of bring it back to that, that need to create the space for what could flourish, um, even in all of the other factors, um, that are a play and to bring it back around to that point to kind of finish off. Um, when, when we were thinking it through and when we were working through getting into that different relational space and wondering about who am I in this work, who am I as the mother of this person in my community?

Pamela  (51:56):

Um, I know we had a conversation with Genia around who am I in community and what is it that I've got to offer and, and, and really dig into what do I have to offer and what does community have to offer me? So we get into that relational space. Um, at the moment, um, I would imagine that in all places around the world, there is, there seems to be in, um, their sense of crisis in inverted commas, for many of the services who have, have been forced to do things differently, because there's not much of a surprise that when you group people together there, they are more vulnerable. Um, and, and COVID has really shown this to, to us all, um, over the past couple of years. But in that sense of crisis, there's also this opportunity to really use the kind of information that we're talking about today.


Pamela (52:42):

Use that, that way of thinking that the journey into what could be possible, the creation of that blue space. Um, there could be moments in time for all of us to wonder about where do we create that space for these kinds of discussions to take place, for this kind of innovation to take place for us to get and work deeper in our levels of listening to one another and listen. When our hearts, as opposed to listen from a perspective and going in not really knowing where the outcome was going to take us, because that's where we're kind of really shifting into, into true partnership. And, and I think that's why we thought today would just be a really helpful introduction to creating blue space. And as you say, in terms of expanding that into really digging into social innovation and what that needs to look like. Um, so yeah, it's been a fascinating conversation and one that, um, we said coming on here, we could, uh, have another two hours of conversation. I'm sure boss. Um, obviously you could tell people a bit about where they could maybe access both of your, your books at the moment.

Hanns  (53:48):

Well, um, Inclusion Press, which is a, um, uh, press that's dedicated to publishing, you know, books that are very supportive of people's journey in this area. Um, I mean, they're very passionate. They're not profit driven, obviously after survive, but, but they're out of Toronto. So if you, if you, I think it's inclusion.com. You can find both, uh, my books and other books that are really excellent in this area and helpful, especially with people are feeling, you know, I'm not part of the norm of, you know, managed care orientation, you know. If you know, need reassurance that they're not the only person in the wilderness that, you know, um, and I think that's helpful. I think it's a start, at least it's helpful reassuring that you're not, you know, bizarrely out of touch that you're actually working on the, uh, positive edge of evolution, which is a, you know, I mean, it's a small, you know, nice reward to know that doesn't get everything, but at least it helps you to, uh, you know, to continue if, and make some choices.

Pamela  (55:04):

Yeah. Yeah. Well, I think the more we have some space to keep holding on to a vision that's for some people might seem like it's out of the norm. More voices and more of us talking through this is not the norm having a home, having a job or are expecting that for people. Um, of course should be the norm. It's, it's ridiculous. It is. Yeah. It's and so heavy in history and heavy in experience and, um, and heavy for the people, um, like families and individuals who have to carry it. So, um, yeah, let's keep having these kinds of conversations because, um, it's in conversation that we can really encourage change and innovation. Um, but certainly I think that anyone that's listening, if they would like to know some more here's some more, or, um, have any questions they could, um, certainly get in touch with Genia and, um, I'm sure that's a handy be only too happy to answer some questions if people hadn't gone forward. Sure. Great. Thank you very much, Hanns.

Hanns  (56:08):

Well, it's so much fun chatting with you in this space. And, uh, you know, maybe we will do a part two at some point and to be interviewed, I guess, and thank you for setting this up.

Pamela  (56:23):

Thank you very much, Hanns.


Genia (56:28):

I just want to give an extra thanks and shout out to Hanns and Pamela for this episode. I'm so incredibly grateful for how the community has really surrounded me and helped make sure that this podcast continues while my sister has been in the hospital and I have had extra family responsibilities. Thank you so, so much. This is a perfect example of being the change that you want to see in the world. If you have ideas for the podcast and you would like to tell me about them, then join the free Facebook group, The Good Things In Life Facebook group, you can find it at goodthingsinlife.org/group. And I would love to hear from you and welcome you into a community of people who like you are trying to shake things up. Thank you so much. And I'll see you again next week on the podcast.

 

Thanks for Listening!

Resources & Links Mentioned:

To get an email about new podcasts so that you never miss an episode sign up here.

To share your thoughts:

  • Leave a note in the comment section below.
  • Ask me a question by email.
  • Share this show on Facebook.
  • Talk about this show in your Instagram Stories.

To help out the show:

  • Leave an honest review on iTunes. Your ratings and reviews really help and I read each one.
  • Subscribe on iTunes.

Special thanks to Hanns and Pamela for joining me this week. Until next time!

To get an email about new podcasts so that you never miss an episode sign up here.

To share your thoughts:

  • Leave a note in the comment section below.
  • Ask me a question by email.
  • Share this show on Facebook.
  • Talk about this show in your Instagram Stories.

To help out the show:

  • Leave an honest review on iTunes. Your ratings and reviews really help and I read each one.
  • Subscribe on iTunes.

Share on email
Share on facebook
Share on twitter
Share on pinterest
Share on linkedin
Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.