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Consumers, patients, service recipients, clients. We have different ways of talking about people with disabilities and most of these terms reflect the different individual relationships they form and interactions they engage in, however brief those interactions may be. But there’s a term we neglect too often in conversations about disability: citizen. This is a core guiding principle of the Citizen-Centered Leadership Development (CCLD) Community of Practice, Carol Blessing’s innovative 15-week course for service providers that work with people with disabilities.
For this episode, I invited Carol to talk to me about her CCLD program and her concept of radicalized citizenship. So many disability service organizations are now required by law to adopt a person-centred approach to their programming, but so few of them actually have real person-centred strategy built into their program design. Systemic change won’t make any difference until we can get service providers to start thinking about people with disabilities as citizens first, and working to build real relationships with them. Reframing disability service as drawing from social participatory citizenship needs to be foregrounded as social programs innovate.
Carol Blessing, LMSW, has over 30 years in the field of disability services in both direct practice and management capacities. In 2000, she joined the faculty at the Yang-Tan Institute on Employment and Disability (YTI) in the ILR School at Cornell University where she leads system’s impact projects aimed at supporting the full inclusion of people with disabilities to be recognized and respected as contributing citizens in typical community life. In 2010, Carol created the landmark CCLD, a compendium of information and resources spanning six inter-connected core topics critical to ending the systemic inequality that marginalizes people because of difference.Carol is doing real groundbreaking work in trying to help service providers reframe the way they think about people with disabilities—the way we want our children to be thought about. I was honoured to have her on the podcast and I hope you enjoy listening!
Welcome to the Good Things in Life podcast. I’m Genia Stephen. Today, my guest is Carol Blessing. Carol is a social worker and has over 30 years experience in the field of disability services in both direct practice and management. In the year 2000, she joined the faculty at the Yang-Tan Institute, on Employment and Disability in the Industrial and Labor Relations School at Cornell University, where she leads systems, impact projects aimed at supporting the full inclusion of people with disabilities to be recognized and respected as contributing citizens in typical community life. In 2010, Carol created the landmark Citizen Centered Leadership Development. CCLD a community of practice, a 15 week blended learning intensive course of study. CCLD is a compendium of information and resources spending six interconnected core topics, critical to ending the systemic inequality that marginalizes people because of difference. Carol, thank you so much for being on the podcast and speak with me today. I’m really looking forward to our conversation.
Well, thank you for the invitation. I’m excited to be here.
Great. So I know we’ve been talking about recording the podcast. Um, you are, you have said that you’re worried about kind of going off on tangents and rants, and I’m really excited because I’m really hoping that you will, uh, I know that you have a wealth of wisdom and experience to share, and I’ve only heard you speak a couple of times, but every time have enjoyed it. So again, thank you. I wonder if you could start by just talking about how you became involved or interested in issues affecting people with disabilities.
That’s a, um, I love that question because I never quite know how to answer it. So the immediate responses it was by accident, um, that I was, my undergraduate work was in English literature. I thought I would be a teacher. Um, and really that didn’t work out for me at all. I didn’t like the structure and the rigidity of, of that kind of a lifestyle. So I, I honestly became a bartender and needed dental work, to be honest, right. You know, if I’m going to be an and ended up taking a job in an organization that served people with intellectual and developmental disabilities, I was a assistant food service manager and I cooked. And in that process, um, began to, uh, cultivate I think, an appreciation for different learning styles and recognizing just the gifts and the contribution, um, that people with labels of disability honestly can make to the world.
So I was at a sheltered workshop and I, um, through the course of my 20, some odd years of being connected with that particular organization, I moved into various different roles, um, and began programs and just saw, um, that segregating people with disabilities was, um, a disservice to our communities and to the people themselves. Um, that’s, you know, kind of the stock answer. Um, the second part of that answer is I don’t really think it was by accident. I do think that, you know, you just sort of fall into things that you’re where you’re supposed to be. And so, um, I was actually raised in a family that had disability as part of it when my dad, um, suffered from, um, a major stroke that left him cognitively impaired when he was 40. And I was at the age of 12, never occurred to me to make that connection until a few years ago, somebody asked me like, you know, just what is it about disability that has you so passionate? And, you know, I never made the familial connection until, you know, I really gave it some thought and then I, you know, just, just that life experience and the way he was treated and the way he actually saw himself was very impactful to me.
I think it’s really interesting as you started telling your, you know, it was a happy accident story. I all getting flashbacks to the number of people who have answered that question on this podcast, almost exactly the same way. And people who are now, um, you know, at the tail end of their, I’m not suggesting you are, but the people I’m thinking of at the tail end of their career and have made massive, massive contributions to the lives of people with disability, um, and to, you know, the community of practice or the thinking around disability. And the thing that strikes me as so important about that theme that I hear over and over again, is that, you know, within the, within the disability community or the disability world, we are often afraid. Um, it we’re concerned that, you know, going out into the world will be met only with, um, we will only meet with sort of unfriendly, unwelcoming, um, people. And in fact, all of the people who are now doing really great work or many of them anyway, started out as just one of those random people who, you know, had an opportunity or an invitation to get to know somebody care about somebody and think about the issues. So just, you know, there’s, I don’t know, there’s, there’s people out there, I guess, you know, so it’s interesting to me. Yeah, I agree. I mean,
I know that oftentimes people will say the community is not ready or it’s not receptive. And I wholeheartedly disagree with that. It’s, you know, when we know somebody as a human being and we share that story with them, it shifts everything. So I agree with you.
Yeah, it does. So I wonder if you can explain what radical citizenship means to you. Sure.
Um, it’s kind of my new energy, you know, my, my new force field. So, um, radicalized citizenship is really a step, um, beyond the idea of the social model of disability and the social model of disability. It says that, you know, the lived environment creates barriers for people who live with impairments and those impairments can become disabling if environmental or the cultural factors sort of get in the way they’re not mitigated. And that’s an important theory. It really, truly is very important but, radicalized citizenship takes it the next step. It takes it into a place that says, um, disability is part of the human condition and it belongs just like anything else and needs not to be, um, needs not to be, uh, you know, like made excuses of it needs not to, um, to be explained away or is it just is, and, you know, our communities and our cultures would fare better with, with just a global acceptance that it’s just part of who we are as human beings.
So how, I’m not sure I’m clear about how that’s different from the social model, which says essentially disability is natural and it’s really how we react to it. That creates challenges and issues for people.
Well, I’m not incredibly scholarly on this because it’s a new theory for me, but it, it, the way I have of understanding it, the way I’m coming to understand it is that the social model of disability actually, still others, people with disabilities, it’s still sort of creates a distinction and a separation. Whereas the radicalized, radicalized model just says that it’s, you know, think of a Mobius strip, just think of just the blending of any of us and all of us at the same time, it refuses to take on, um, uh, uh, structural identity, right. It just says that, you know, for example, one example in my reading was, um, uh, an argument against the social model or even the idea of universal design. Um, so as you know, there’s a place in, I dunno, Hollender Sweden or someplace where, where the buildings are completely accessible to people they’ve been designed for anyone.
No matter if you don’t speak the language, if you don’t read, you don’t write, you don’t walk, you know, any of anything, any kind of a difference that you can imagine, but it’s in Sweden or it’s in Switzerland or wherever. If I can’t get there, it does me no good. So that while it might have this universal sort of design, it’s still unaccessible. And so, and so that’s sort of the, um, the conversation, I guess it is. It’s, you know, like that, that, that moves a little bit away from, um, or expands on steps on the, um, social model, not as a, you know, it’s, it’s not dissing it. It’s not saying it’s not important and it’s not there. It just builds off of that. And, and more immersion, I think. And
Why does that have you so passionate?
Well, you know, I’ve been in this work for a long time, as you mentioned. And I just, I just don’t appreciate, I guess when people who live with difference because of disability are identified as something other than human. And I think that is what happens. And I sat, I thought long and hard about like, well, well, what is it? So I’ve been around for a while. I am towards the tail end of that career. And I’ve had the benefit of learning from very wise people, people in the field of disability who have created pathways for inclusion of people whose difference is, you know, has caused marginalization. So people with significant disabilities, people, you know, who are not part of the mainstream, right? The, the, the, the center normal. Um, and so the people whose names, you know, like I will drop, right, John O’Brian and Beth Mount, and Jack Pierpoint and Marsh Forest, Judith Snow.
These people were, are incredible leaders, thought leaders and cultivators of ideas, um, that challenged the field, um, to listen differently, to listen deeply and to recognize the gifts and the capacity of all people. And that when we are in that space, when we recognize who people are at the core, we begin to see that our communities are our own lives benefit from those relationships. And it’s not an us and them it’s a we. And so the deeper I got into something called person centered planning, being mentored and taught by these very incredible people who are, um, for the most part, you know, still in my circle, if they haven’t gone beyond, you know, into the next life, um, to, to really, to really challenge kind of status quo thinking to really, um, to really recognize that there isn’t anyone, our communities, our societies don’t need.
Um, and so the idea of Citizen Centered Ceadership, this, this construct of citizenship was something that came to me as a, um, it’s, wasn’t my favorite word, but I cannot, I can still to this minute have not found one that would be catchy enough, um, to use regularly and have people relate to it on par. So, you know, people who live with, um, a variety of disabilities are called different things. They might be called consumers, they might be called patients. They might be called recipients. They might be called clients, individuals, individuals. Yeah. So, and I, you know, you had that, you know, the air, the air quotes, right. And, and so the, uh, the distinction, when we call a group of people, something other than what, how we refer to ourselves, that’s the marginalization, that’s where that happens. It creates this divide. And I was working really hard to think what, what kind of terminology would be very difficult for people to shake away from, to move themselves away from.
Right. And so, and this was 2010, so it was, um, you know, a decade ago. And I thought, well, maybe the word citizen, not citizen in terms of carrying a passport or a green card, but citizen, in terms of showing up and making a contribution, um, yeah, the role, um, the responsibility, the civic responsibility that comes along with, you know, being a good person. Um, and so, you know, that, you know, that whole idea just fires me up because I think if that’s where we’re coming from, then, um, the support or the resources or the work that we do with people with significant labels of disability is about finding who they are as a contributor. Finding who they are, um, in terms of giftedness and wellbeing and how, um, and how the relationship that we have then shifts, it shifts the power base. It shifts, you know, the whole identity and the whole, um, relationship between me and you. If that
It makes sense. It does. Yeah, it does. So tell me about the Citizen Centered Leadership Development,
Community of practice. Sorry.
That’s all right. Um, it’s a lot of words. I know it, you know, um, so, you know, w um, and my, my it’s, it’s, it’s a lot to explain. So CCLD is really, that was just a manifestation. I was thinking to myself, self, right? So I worked in the field for a couple of decades, and I worked with these masters. I worked with, I worked in a wonderful organization with mentors and, um, you know, the director, the executive director was somebody who just believed in being a learning community. And so he would bring in these incredible thought leaders so that we would learn from people who, um, you know, were leading kind of leading the way in innovation and, and, you know, in support of people with disabilities and their families. So I was really, really lucky to have landed where I landed. Um, and so in the process of sitting with and learning from all of the folks that I mentioned, and then some, um, and, and really, really understanding, um, the intent of the work, that person centered planning really isn’t about, um, a bunch of words, you know, or changing words on somebody’s plan.
It really is about a way of being in relationship with people. And it’s about that deep listening, um, and seeking to understand, and then being a real service to somebody’s life goals, right? Somebody’s interests, somebody’s kind of calling, um, in life and helping them to get there, you know, as, just as just, you know, something that was important. So I remember just kind of, uh, well, so I started a lot of different programs that were pretty cool with the organization and using person centered planning as a basis and community inclusion as the goal, and bringing the principles of person centered work as John O’Brien had imagined them into kind of a reality. So it’s, you know, how do we help people to live a life where, um, you know, they have choice real choice. How do we support people to build on the skills that they already have?
So they increase in their competence. How do we shift social perception, um, through relationship building with people, how do we, you know, make sure that people have access to, um, the same kinds of opportunities and options that people who are not labeled have. And how, how do we make sure that people are respected and, you know, given the dignity that they deserve, those types of ideals. Um, and so having learned for, you know, 15 years or so from these folks and applied the, you know, put into practice their teaching, um, I got invited by Cornell University to come to them. You know, they were, they were running a few different grant projects related to person centered planning around the state, and they invited me to come lead those projects. And so what a lovely invitation and, you know, the year 2000, I said, okay. And I joined the, you know, the Yang-Tan Institute.
And as I did that, I remember just kind of using, just thinking, you know, like after all of these years, I mean, decades, that person centered planning has been around since the seventies, right? Why is it when I look around my community or any community for that matter, you know, I get to travel the state sometimes the nation. Why is it that I’m not really seeing people with significant disabilities anymore, a part of their community than ever before? I mean, so a few people are here and there there’s a few people employed, but they’re kind of employed and things you’d expect to see people employed in, you know? Yeah. And flowers, and then, and so in filing, so like those elements, you know, kind of confused me, I thought if we have all this knowledge and technology and these wonderful, you know, programs and services, how is it that it’s not really made that much of an impact?
That was a big and burning question for me. Another thing that really led into the CCLD kind of ideas, you know, you mentioned there are six, um, interconnected modules, um, was that I was noticing that there were different approaches, um, in different places. So I’m a person centered planning person, that’s my jam. Right. But there are other people who are invested in and have learned from asset-based community development and that’s the work of John McKnight, you know, and, um, a few other really fine folks. Um, and I think, well, it’s critical. That’s really critical work, but, and it’s not an either or, like if we’re really going to do good community development, we actually have to know asset-based community development approaches. Right. That’s ABCD. So that’s a component in the course. That’s one of the modules. Another thing I felt was really critical was, um, to, to really take a look at the lens of why is community building an important thing to do with people whose labels, you know, of disability have marginalized them.
And so there’s a community building imperative part that sort of looks at the history and challenges, learners to think about their own biases, to think about how did we get raised, you know, to think about difference and how are we carrying that into the work that we do. Um, and so we spend a lot of time talking about what I call the integrity gap, the space between what we say we want to do with people with disabilities, and then how it actually shows up, manifests in their experience. So, um, and then we also taught employment is looking at the employment, you know, Disability Institute at Cornell. So employment is something critical, at least in American culture. Hey, you know, I mean like you and I meet for the first time and what do we say, right. You know, what do I need to do? Yeah.
Where do you work? You work out of the home. And so employment is such a critical cornerstone of valued social role in our, in our culture that it’s got to be an expectation of people who, um, are typically left out of that expectation, you know, and then another important component I think, um, or I thought, and, and integrated is the idea of organizational planning or organizational design most what my experience has been, you know, to come through human service organizations in the disability service world, there’s lots of organizations. Um, and, and as a trainer and as a facilitator of person centered plans, and now, you know, um, I don’t know, 35 years into it, I get a lot of calls asking me if I will train staff, train them up. And now, um, in, in this day and age in the United States, it’s actually, if, for organizations, for programs that, um, take that, that except homing community-based service dollars from the centers for Medicare and Medicaid, I always mix those up, but CMS, um, they’re required to prove that they’re actually working in a way that reflects person centered planning. And so I get a lot of calls and it’s in those calls that I recognized that organizations were essentially saying train up my staff, um, but actually not really altering any of their own practices, policies, or procedures that actually supported staff to do good person centered work. And so it didn’t really, and hasn’t really yielded many positive outcomes.
Yeah. Yes. So I wanna, I wanna loop back a little bit. And so there’s two things I want to make sure that we cover. One is getting back a little bit more to the learning opportunities that you offer in your community of practice. Um, and then I want to address what you just raised, which is sort of the coaptation of the heart of person centered planning. Um, but let’s for now, let’s go back. I want to, so your, so who learns with you?
Yeah. Um, so thank you for that. And they’re almost linked. I mean, you’re almost, we almost can’t talk about one without the second thing you want to talk about, but the way the course is designed, it’s 15 weeks long. Um, it’s an online learning journey, right? So that people move at their own pace sort of, but we meet once a week via zoom. Um, you know, online, um, uh, throughout the entire course. So there is this live and that’s where the community of practice really comes in. So participants who I wrote the course geared towards service providers, not towards people with disabilities and not really even family members. Um, really, so it was, I was, I had seen that the issue is really from an internal systemic kind of place. And if we were really going to do good person centered work, that’s where I felt we needed to raise some heightened, some awareness and raise some aha moments, um, and try to influence then how resources were being allocated and, um, you know, approved and spent.
So I geared it towards service providers and, and preferably towards middle managers and upper managers, because they have authority, right. You know, empower and influence. Um, so that’s, you know, just so you have that, I idea. Um, but I make, but I also threw in a requirement and the requirement is that anybody who signs up for the course must invite two people to go on this learning journey with them. And I call those people learning partners, um, and the learning partners are selected because the, um, participant in the course may, you know, be working directly with them or they may work in the organization, but there are people that they want to help them. The participant, um, really explore the different modules and the material that’s within them in, in real life, in real place-based learning. And, um, because I think that’s the only, it’s a theory to practice kind of idea one of the two.
And it’s only a minimum of two that I require, um, in terms of learning partners, but one of the two people must be a person with lived experience of disability. Um, so they become a mentor. They become a guide. They don’t sit in the computer class, right. They don’t sit in the online course. Um, they, they participate as learning partners external to the course because I have, um, field assignments that are built into the 15 weeks. And it’s the primary assignment is called Profile of a Citizen. And it’s an action based approach to taking, taking critical core concepts from each of the modules and then applying them in real life. And the most important thing, and the part, the part that is the community of practice that, you know, the gold, when it really works well is when we come together on Tuesday afternoons, um, as learners together, some participants come in and, and we talk about how is it going? You know, what are you up against? What are you learning? And, and the critical element for me, kind of a litmus paper test is, um, is watching, um, the participant in the course recognize, and then reframe the power and authority that they have in somebody’s life to sharing power, you know, to sharing that sorority. There’s a humbling that happens when somebody recognizes that, um, what they thought they were doing that was, they called person centered. Wasn’t really at all, it was system centered. And that to be person centered means something very, very different.
Yeah. So one way that we see one way that we see person centered planning co-opted by services and by systems is to take a say, well, we do person centered planning and therefore, um, our approach is XYZ. And so there’s sort of a, like, there’s, you know, we have an intake interview or we have a questionnaire, or we have a, like, whatever they’ve decided it’s going to be. And there’s however many dozens and dozens and dozens of questions. And that happens to all people, regardless of who the person is and the person doesn’t influence the process, nor necessarily does the person influence the outcome. Is that accurate?
Yep. Yep. And when I, when I do some training, I, I talk about, you know, using my little PowerPoint slide and I talk about that in a very general sense. Think of it as three different ways of being of approaching person centered planning. And the first is very systemic. It’s checking off boxes. Did we do it right? Did we ask the person, did we write on our forms? It’s in their own words, did we say we offered choice? Yes, yes she has. And here’s how we proved it. Like, would you like to go bowling on Tuesday nights or would you rather go to the movies on Friday that’s choice, boom check, right in us that’s system centered. The second kind of way in which person centered planning might be approached by an agency is what we call paper centered planning. You know, paper centered planning is when the goals actually reflect a little bit better, what a person wants, but it’s within the constraints of what the organization already has to offer.
So, you know, we, we can, you can have a, it’s like a menu you can, you can pick from a column, A, B, and C, you can mix them up, but don’t go off the menu because we can’t do that. And then, so that’s more paper centered. Um, planning person centered planning in its truest sense is really about, um, using the resources, the talent, the skill, the staff, the money, you know, all of that in service to a person’s purpose in life, to their goals, to their, you know, um, to who they are and in a community, um, in typical community settings. So it’s like, it says, how do I help this person to show up in community life in meaningful roles, meaningful to them and meaningful to others. Um, and that takes a lot more work. It’s very transformational because systems weren’t set up to do that systems were set up to contain people not
To, um, empower and free them.
If that makes sense. It does make sense. It makes perfect sense to me. Yeah. When you’re talking about that relationship, you know, that bringing all of the resources that exist to bear in helping somebody to fulfill their purpose in life. I, I was thinking about, um, this might be so far out there that it doesn’t make any sense, but I was thinking about my marriage and the evolution of my marriage. So my, um, partner and I were married when we were, uh, well, we were married in our mid twenties, but we started dating when we were 15. And so at the beginning, you know, we established a relationship based on, you know, who we were really as kids. And then over the years, um, you know, we had to evolve very much our relationship into an adult relationship. And then, you know, again, over the years into one that, um, in its idealized form and we aiming for an idealized forum where we are in fact partners in helping each other to reach our individual and our collective purposes.
And, um, and I’m not sure whether that makes any sense or not. But the, I guess the, the two things, one person centered planning has to be relationship based. Like you have to deeply know the person and come to understand what their life’s purpose is, not what you scribed to them, but truly their own life’s purpose. Um, and two, you can’t in the same way that, you know, are my husband’s and my 15 year old, um, established relationship could never accomplish that. Services can’t either, you know, like if it’s the wrong, I’m not saying that a service can’t can’t, uh, what may, maybe I am actually saying that services are incompatible with person centered planning. I’d have to, I’d have to think deeply about whether or not I believe that to be true or not, but, um, but there is a disconnect between like checklist or paper centered planning and the relationship that is required to truly be providing person centered planning. You can’t get there from here kind of thing.
Speaker 3 (00:32:25):
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Well, there’s a lot in what you just said. So I think your marriage, your marriage example, the way you’ve described it is a good analogy. You know, not all marriages would look like that. Right. So think about it, right. So what is it that re what does it require you could actually tease apart? What does it require of two people to enter into a relationship that’s mutually beneficial and rewarding and all of that, you, you know, you, you, if we sat you and your husband down, and we said, what are the indicators? Those in a, what, what, what were the elements that had happened? A person who works with an in-service to, or of people with disabilities has to kind of think about it from that place, the very same kind of, what does it take for us to be in not just relationship because you and I have ones, right.
You know, it’s, it’s any, anytime we’re with somebody, there’s a relationship, Michael Kendrick, another incredible thought leader and a guy who coined the term person centeredness, Michael Kendrick says, it’s not just relationship. It’s about right relationship. Right. You know, and so you use the word partnership that’s critical, um, you know, genuine, critical interest, critical, you know, a desire to help somebody to be their best self is a critic it’s gotta be authentic. Right. Um, and when you think about, I will say to you, um, Genia, yeah. There are organizations that actually have person centered planning nailed they’re far, and they’re few they’re outliers. Right. And they tend not to take on federal funds or, you know, governmental funding, um, that constrains their ability to be that. So that’s, that’s a decision that gets made, um, because, um, at the end of the day, the real, the real issue is, you know, uh, who’s your boss, right?
And if you’re worrying about compliance because the government or the, you know, the entities that have given you money are going to take it away or punish you, if you don’t follow their rules exactly the way they’ve written them, that’s your boss. Right. And, and for organizations that have really managed to figure out how do they, um, operate in ways that are reflective of authentic person centered approaches recognize that the person and, or their family is the boss person primary, you know? And, and so everything else follows under that. And so it can be done. It’s just not done that often. You know?
And so if that’s the case, this is, this is maybe rude to ask you, we want to record a podcast so we can cut this part out if you don’t answer. But if that’s the case that it’s possible, but it’s few and far between how effective, um, is your training program for service providers?
Well, um, and we can cut it out because to me, I mean, uh, you know, what, I, I actually love the question, um, because I’m sitting on the horns of that dilemma. Even as we speak 10 years into that program, when, uh, I will tell you that I can, I can name on my hand, my right hand when people have really taken the work, you know, that went into it, um, and, and brought it back and, and seated it where they are, or enhanced what they were already doing. It’s made a pretty profound difference in people’s life. Um, but when people take the course as if it were a training and decide to pick and choose, um, you know, what they’ll do, and what’s good enough in somebody’s life, it does, it, it doesn’t have the impact that I would wish like my, my litmus paper test.
My goal is that the relationship between you, the participant and your learning partner with a disability shifts so dramatically, that you can’t imagine this person not having a space in community. And I don’t always see that happen. I sometimes see what I tend to see is people become more benevolent authorities in people’s lives. So there’s sort of a, you know, you can, you can, we’ll, we’ll help you to have choices and we’ll get you there, but it’s still this kind of consumer client individual relationship, but I’m still a person in a position of authority. Um, when I’ve seen it happen, when people really take on, um, take on the responsibility of the relationship, then it never ends. You know, so an extreme example, when in class, somebody said to me towards the end of the 15 weeks, so what do I do with my learning partner when we’re done?
You know, and that, yeah, that causes tears for me and loss of sleep. And on the other hand, um, I just, you know, a friend of mine, you know, um, now she has become a friend of mine. She went through the course, um, her learning partner is now a member of her family. She’s they actually, you know, they actually just welcomed her as their daughter in line to their home. Right. You know, so it’s kind of like, you can see this incredible difference depending on how seriously and deeply a person takes it. You know, I, I always say, um, throughout the course, this isn’t about your organization first it’s about you and your own self, your own belief. This is between you and you and, and where you sit, you know, in the work that you’re doing and why you’re there and how you really, what do you want, what do you want your purpose in life? So, cause it’s not a person centered work. Isn’t about disability at all. You know, it’s not disability specific. It’s about human beings, you know? And I think that’s really critical.
Yeah. I just want to say to people listening that I asked the question, not, not as a measuring stick for the quality of what you’re teaching Carol, but just, you know, it’s a, it’s an ongoing, it’s a question I, I try and keep asking myself, you know, how effective, how, how effective am I being? Or how effective is, you know, any, anything I come up, come across and gosh, darn it. Let’s just change things already, you know, like that desire to be like, okay, Carol, how effective is it for you? But it’s, it always comes back to exactly what you just said, which is the change is profound, depending on the intention of the person entering into the conversation and the reflection and the learning, and you can’t standardize, you can’t standardize it. And one of the, one of the, um, things that I’ll kinda Luci, um, said that I just love is you can’t legislate morality. You can’t force people to be kind or, and you can and I love, and it, and it’s so true. And it applies to it’s exactly what you’re saying, right? Like you can’t systematize or force people to think deep change.
Um, let me tell you though. I mean, so, and so that is why the question is, is not offensive to me because it is an individual who you, if you take the course, you bring yourself to that, and people come at it from wherever they are. I’ve had people, this is hand to God. I have people who have taken the course every semester that we’ve offered it. I mean, I don’t charge them. This is 10 years in. I mean, they sort of helped me design it, but every time I teach it, the thing that is profound for me is every single time I’m invested in the 15 weeks, I learned something different in viewers deeper. Right. But the makeup of the course, I think is where I, you know, is, is critical. And so remember how I said, I learned from all these thought leaders and there’s six interconnected modules.
I spent a year, um, interviewing thought leaders like John O’Brien and Beth Mountain, Jack Pierpoint, and Diana Whitney, and appreciative inquiry around organizational change. And, um, you know, Mike Green and asset-based community development. I talked with John McKnight and got permission from him to use, um, resources from his own work and, and videotape these interviews across the series of questions from what is disability, why are people with disabilities, not part of community. How do you do community development? How do you make organizational transformation happen? Those types of questions, videotaped them, edit down those videotapes into what is now this 15 week course. So you’re hearing and learning from the people whose ideology is, is represented under the auspices of, excuse me, citizen centered leadership and person centered planning. It’s not me. I’m kind of a curator, right. You know, a conduit. So, so to that end, anybody who goes through the course is being taught by the masters and just like my own journey.
Right. You know, like in the beginning, I didn’t, I thought I understood it and it was the next time and the next time, and the next time, you know, that I would go deeper and deeper. Um, and we actually see when people do take the work in the course seriously, about the fourth a week, we begin to see something very important happened, and they sort of lose the identity that they started the course with. They, they sort of have a crash, right. You know, there’s an identity crisis when they go, I thought I was, and I realized that I’m not. And, um, John O’Brien, we have a book called conversations on citizenship and person centered work. That is the compendium. It’s just the it’s, um, a series of the tran, uh, some of the transcripts from some of the video that we just, if you take the course, you get the book, you can also buy the book at inclusion.com.
Um, but anyway, John talks about that moment. He says, you know, that organizations, and to the large extent, even societies have a habit of putting people to sleep, right? Like if fast track things, it’s easier, it’s more efficient. We don’t have to think about things. And when people are in the course, and they’re really thinking about not only the content, but their own relationship to it, and in, in, in a relationship with another human being, something happens and he calls it an awakening. People sort of get woke up and they like, Oh my gosh, you know, um, there’s this awareness, I guess it’s an aha it’s in that moment that people have to make a decision. And that’s, we kind of talk about the space of freedom. You know, we talk about that. That’s, that’s your greatest power is that space between, you know, that waking up moment and what you decide to do with it, you can either go back to sleep.
This is too hard, you know, reject it, shun it, you know, pretend it’s not there or, or, or deal with it face on and start to make some, you know, gradual or radical changes in how you come to see people. And that’s when the course is at its best when somebody commits that’s the, that’s the tipping point. So there’s no, I have no control over how somebody is going to answer the question from now, what do I do? I can’t control. I can only, I can only listen and I can only, you know, be a mentor if they’re interested, but the ultimate decision is theirs. And that’s where the power always rests in our relationships with. Yeah.
Yes, yes, absolutely. Okay. I want to move on to talking about person centered planning a little bit, and just to be transparent with people listening. One of the things that I keep talking, I kept saying to you in the conversations before this recording was that I really want to point out, you know, I’ve called it person centered the coaptation of person centered planning. And the reason that I keep talking too about that Carol was because it seems, um, I think, I think it’s dangerous and I just want people to kind of be aware that this is the thing that systems are doing. And, um, it’s becoming more and more, uh, common, pervasive, um, and problematic. And so I want to read part of an article or a letter that you wrote. And if I, if I scroll, I’m going to miss the, the squirrel to the other authors, I’m going to lose my spot. So I wonder if you can tell everybody who the co-authors of this.
I don’t forget anybody. I, you know, descend from consensus. This was done in November of, uh, uh, what is this? 2020 ways. So it was, was it 2019, November of 2020 anyway, uh, John O’Brien, Beth Mount, uh, Beth Gallagher, Peter Lighty, uh, Kirk Hinkleman, Marcy Broast and myself.
And what did you write this in response to?
So in the United States, um, and it’s been happening since probably 2014, our federal government, I mentioned, um, CMS, the Centers for Medicare and Medicaid Services, which is the primary funding principle for disability rehab services, disability services in the States, um, uh, created a regulation that said any entity, any organization, any state that, uh, accepts home and community-based waiver services, it’s a type of funding must comply with the regulation that says among other there’s several regulations, um, that, that you must, um, you must provide person centered planning as the basis for planning with people with disabilities. So that’s, you know, there, there are several other regulations that are to support, um, that like community first, you know, that must be inclusive in communities and such, but, um, anyway, so, so, so they were after the regulation in 2014 was being kind of rolled out or whatever they they’ve, um, they were inviting. They were creating definition of what is person centered planning as well as there’s a whole committee put together to, to define person centered planning, talk about, um, outcomes of person center planning so that there were measurable outcomes of it.
And then what, um, what, uh, characteristics, what credentials people, facilitators of person centered planning thought to have. Um, and so they pulled together a national team of advisors to kind of discuss this and put out a paper, you know, a, they put forth a, a paper that was covering all of these things. And they asked for public comment once the first draft was established around the definition of person center planning and a hint at some of the, you know, requirements for facilitators and things. They, they put it out for public comment. And I had been watching this happen for since 2014. And then, um, I knew that it was kind of a done deal, but I felt like in this November time with, with their asking for public comment, that to say nothing would have been to say it’s okay. And, you know, so I just felt like we have to draw a line in this. I have to draw a line in the sand. And I asked my colleagues, you know, I said, I got to do something, I got to respond. I know the train has left the station, but if to say, nothing says, it’s, you know, I’m complicit. And they were like, you know, let’s do it. Yeah. Yeah. So we created a, we w we got together and developed this descent to consensus.
Okay. So I’m going to read just part of this, um, and we’ll link to it in the show notes so that people can read the entire document, and I’m really starting in the middle. Um, so we may lose some context here, but, and the reason I want to, the reason I want to read this section is both of, you know, point out the fallacy of legislating person centered planning certification, and, um, smart goals. You don’t like quantifiable, um, measurements, but also to talk about person centered planning and what it takes. So, um, I’m going to start reading now. Many people, families and guardians have learned to scale their dreams and desires to what they assume current services can offer. Unfortunately, this distortion of the desire for full citizenship can be locked in by internalized low expectations. Natural support from people other than family members usually requires careful cultivation and support such assistance is seldom simply available as an option to deploy at will. Shameful under investment in the workforce, leads to turnover and recruitment difficulties that disrupt relationships, undermine trust, and limit, follow through, and learning. Aligning different perspectives on a person’s capabilities, possibilities, and vulnerabilities can take a good deal of listening and creative effort. Risk management, policies, rules, service, definitions, and billing codes, pose barriers to flexible individualized supports. In light of these constraints,
It isn’t surprising that person centered planning that we experienced can be messy, confusing, and slow. Progress can’t be mapped and managed on a timeline. Goals change as people encounter unexpected opportunities and obstacles, not by annually. I’m going to stop there. Although, you know, as we continue, it’s, it’s remains relevant to my point, but moving away from the co-optation issue, I think that section really speaks powerfully to both the changes and the opportunities that are inherent in person centered planning. And I think it also kind of hearkens back to what you were saying about what it requires from an individual who’s committed to doing it like an individual human. I don’t mean an individual with a disability. Um, because it’s, it is messy and it doesn’t, you know, it doesn’t really follow a particular timeline. And, um, similar to this is, you know, you’re mostly talking about adults, I’m talking, you know, often I’m talking about kids, but you know, same with IEP.
That makes me crazy thing, you know, the way IEPs are written, um, really they should be about what the education system is going to, um, be doing and measuring that, not measuring these, you know, smart goals for kids. Um, as they evolve through a year kind of thing, and bi-annually and all the rest of it. So the, when we’re thinking about person centered planning, not from an agency or organizational perspective, but from a community perspective, a family perspective, um, it is really messy. And it is really slow. When you are asking me, you know, when you said a few sat, my husband and I down and said, you know, what does it take? Or what does it look like? You know, and I felt well, it’s really messy. That’s, that’s what I was thinking. So, yeah. Um, and I think it’s John McKnight that says, talks about the fact that community itself is messy. And when we’re thinking about our loved ones with disabilities, that messiness is really scary. And the slowness of it is really scary. And the barriers and challenges are really scary and overwhelming. And I’m wondering if you can just talk about, you know, we’ve talked about learning and structure and reflection, but I’m wondering if you can talk a little bit about sort of the, the lived experience of walking with somebody throughout their life and providing that very specifically person centered approach.
Well, what, when you asked me to talk about that, what are you looking for? In terms of, cause you know, the angle, because you know, the first,
I mean, I guess the angle that I’m thinking about is just, I think that there’s a, one of the reasons why person centered planning, I’m sorry, my brain just squirreled all over the place about all the things I think about person centered planning. One of the things that I think is that not only is it a propensity of the service system to co-op person centered planning, but there is a heart’s desire on behalf of families sometimes for something that will work, right? Like, uh, you know, you take this step and then you take this step and it will be, um, positive, safe, and it will work. And so there’s, ser, while it’s, I, I think this is primarily a service provider problem, the co-optation, um, I also think that families have, um, may and obviously not everybody, but there is that sort of desire for something that just works, just fix the system, just have answers. So yeah, exactly. Having somebody please have some answers for me and the reality of life, um, is very, very different from that. So I’m just, I guess I’m just trying to
The hearts of the people who are listening and, and, um, speak to that a little bit, but I guess it’s not a very specific question I’m asking you, I guess I’m putting it off.
Well, no, it’d be, there’s so much. Right. And I, you know, don’t want to, I don’t know how long people will listen to, you know, forever, but, um, so there’s a lot to unpack in what you’re asking, you know, in what you’re asking, what is the first thing is? So if I understand what you’re saying is look, you know, uh, aside from, you know, organizations, family members want for their children, for their kids, you know, for their loved ones to be long, to be happy, to be cared for, to be like anybody else. Right. Um, and so how do we make that happen and, you know, can it happen? And how does, how does the idea of being person centered, um, you know, show up in, in almost an everyday in life? So that’s a big question, right? And, and I, I, listen, I w I want just say I’m encouraging people to go to the cclds.org website.
There’s a trailer, there’s a small video trailer that only answers the question. What does it mean to be person centered? And please watch that it’s John, you’ll see all the people that we’ve had speaking into the course kind of to answer that. And Beth Mount is so eloquent and she, you know, she says, you know, to be person centered is to put the individual, put that person in the center of our thinking and of our planning. You know, and to, to take that, to, to listen to them in their family and to, to take that wisdom and have that lead us to be led by their wisdom. Right. You know, so that, it’s just so beautiful, the way that she says that. So in its purest sense, as family members to say, not only do I want that, but I deserve that, right. My kid, anybody deserves to have their story listened to a known, right.
And to have the sense. So, Oh, Brian talks about, um, he talks about something called valued outcomes, valued tasks, and valued accomplishments. And they’re distinct, it’s a distinct idea for different players in a person’s life. And so the valued outcomes are the experience that the individual has when somebody is actually operating from a place of authenticity and person centered work. They have the experience of belonging, they experience of being respected. They express, you know, when we’ve done our job, well, the, um, tasks are really what an organization or, or somebody who’s involved in somebody’s life would have. So that’s like, how is what I’m doing leading to those things. So that there’s a direct link, but the, I call it three legged stool. The third leg of the theory is valued accomplishments. And John says that that’s the work of community members, that’s the work of people outside of any other element.
And that there are components, you know, that like community has a responsibility to be hospitable, to people, to be welcoming. You know, to share an inclusive stories, to be part of that life, not to be an observer in that life, right? Like it’s not somebody else’s job to welcome people into community, it’s community’s job. Right. You know, and that’s anybody’s job. And he also talks about, they have a response. We have a responsibility to resolve the conflict that will inevitably arise because it’s messy business. I don’t know. And the dis in the late Mike Mayer, a real amazing friend of mine, and it’s such a, such a leader, I think in thinking around this idea, this construct of system versus community, um, talked about, he said, you know, we have done such a for, for decades. For hundreds of years, we have done a great job of institutionalizing the community. And what he means a part of what I think he meant by that is that we have removed people from society, marginalized folks so long, and so effectively that when people whose different shows up as disability are, are being reintegrated into community settings, the community member doesn’t feel like they have a responsibility to that, that we have done a great job of just making that somebody else’s business.
And it’s, I think that the real bridge is, uh, is to say no to that. Um, you know that no, no, you don’t have a right to, you know, to just check out and say that somebody else’s job. No service professionals are important people, but they really don’t have wings. They really don’t have halos. They are not a special breed. Right. You know, that’s a different, you know, that’s just like, it’s just a silly idea that, you know, there are some chosen people who can put up with or support people differently than you where I can, if we’re members in just any common place. I think the, and the, and another thing I just want to say is, um, when person centered planning was invented, it was invented as a way to listen to people who didn’t necessarily communicate in traditional ways. And it was invented outside of the service world.
It never was intended to be part of a system, right. You know, not in it’s truest sense. And it always relied on natural support and a circle of people who cared about this person and helping them to have a meaningful life and a life that was me. And in that, in that walk together, everybody’s life was impacted in positive ways. And the idea of, you know, radicalized citizenship, isn’t like, you know, it isn’t like you get to be a citizen in spite of your disability, the community actually benefits, not in spite of it, but because of it, right. It’s this idea that because of what you bring, we actually become a better people, you know? And so, uh, you know, different families have different expectations. You can, you can look around and find stories of families who refuse to say no, and who refused to, um, uh, relies solely on, you know, the industry to, to, to help that help their kid get a life.
Right. You know what I mean? But we’ve sort of been, that’s a brainwashing that we get from school on through, right. So kids are in special ed and then, and, and parents who don’t know, especially first-timers right. You know, who don’t, this is, this is a whole new world I’m not used to, I don’t know, professionals come in experts come in and they start telling you what to do. And, you know, and you don’t know, and you want what’s best for your kid. Right. And if I don’t know what, I don’t know, even if it in my gut feels different than what I would do, I have to trust the authorities. I have to trust the experts because if I don’t, I could be doing something terrible to my kid. And I don’t want to do that. You know? And so at a very young age, you know, parents are influenced, you know, into believing that the system knows better, you know?
And so, and how many, you know, like, and then we start, I spend a lot of time looking at behavioral stuff, you know, and looking at positive behavioral support. And we know when kids act out, you know, we know that it’s an expression. It’s not, you know, they’re really not trying to be idiots. They’re, they’re expressing something that’s really important and it’s being pushed back against them. And so, you know, so from childhood on, up through adulthood, we systematize the thinking that, um, this is where people belong, that the system is in, I am not about system bashing. I’m just saying that it’s, it has become the only thing, you know, that, that, you know, it’s, it’s the be all and end all. And I think that’s a crime, you know, I think it should be a part to the extent that a family or a person wants and needs it. It should be a resource. It should not be the definition of somebody’s life. And yet it is, you know, for the most part, in many, many ways. So, um, and so that’s, to me, the difference in the, here in the United States, the federal mandates for person centered planning look very different than what John O’Brien and Beth Mountain and Marcia Forest and Judas Snow, and, you know, Jack Pierpoint, you know, very different than the way it’s manifesting itself.
Yeah, yeah, absolutely.
And the descent paper, sorry, the descent was, here’s a line of, here’s the difference. Here’s a line that we’re drawing and, and CCLD and, um, in the next decade, I’m actually, you know, working hard to think about what’s the next iteration of that, um, of that learning, um, experience, you know, is to say, let’s just at least provide alternatives to what’s being mandated. If you really want to, you know, explore what it means to be authentically, genuinely person centered, come on over, you know what I mean? Like it’s, you have options and, and if it feels weird or wrong that an organization, a system or an entity is sort of calling something person centered, but it doesn’t feel like how you would, you know, it’s not the kind of life you would value trust your instinct, you know, just, yeah.
Yeah. Well, good things in life is, you know, my intention behind it is very similar, which is to be an alternative, you know, we can, we can start with a vision of a positive life at the heart of community and go from there. Um, instead of starting from a diagnosis
Well, for less, I mean, that’s the thing is, um, in, in the way that excerpt that you read from the descent, you know, families have been, you know, asked to accept a
Watered down version of have a good life. You don’t have to, you know, I, I say no descent. Yes, Carol. I think that’s a perfect, perfect message to leave with descent. Just say no. Um, Carol, thank you so so much, I have been enriched by this conversation and I hope it is not our last, um, and I’m just so grateful to you for your time for all of your work and, um, for, you know, being a quality individual in the world. Well, thank you for this opportunity, the invitation, and anytime, you know, I love talking about this stuff. So anytime you got time, I got time. Awesome. Thank you so much. You’re welcome.
Thanks so much for joining me today on The Good Things in Life podcast. I hope you enjoy the conversation with Carol as much as I did. If you are interested in Carol’s course, you can go tocclds.org and all the information is there. When Carol and I will put the link in the show notes, when Carolyn I stopped recording, she said, um, that if you are a family provider or excuse me, if you’re a family member or a friend of somebody with a disability, who’s interested in taking the course that she would be open to working with you for around a registration fee that you can afford. And that works for you. So I thought that was an incredibly generous offer for the listeners of the good things in life podcast. I hope that you will join me again next. Take care.
Thanks for Listening!
Resources & Links Mentioned:
- The “dissent from consensus” article
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Special thanks to Carol Blessing for joining me this week. Until next time!