A Unified Approach: Searching for Solutions to CVI with Ed Bosso



VALERIE WELLAND: Hello, and welcome to Perkins E-learning To Go. This is Valerie. I recently spoke with Ed Bosso, who is the executive director of educational programs and superintendent here at Perkins School for the Blind. He was here to discuss how Perkins is stepping up as a leader in cortical cerebral visual impairment, otherwise known as CVI, by first hosting a collab to start the discussion, and then fostering a unified approach to remove challenges faced with CVI, which will be further supported during our upcoming CVI symposium and onwards. Here is our discussion.

It's my understanding that Perkins held a collab this past November. What is a collab?

ED BOSSO: So we hosted a CVI collab. So it was focused on cortical cerebral visual impairment. And a collab is basically a gathering of stakeholders who, during that meeting together, share, learn, and create a deeper understanding about a very complex problem using what's called a structured democratic dialogue, where every voice is valued, respected, and recognized in the room. And so it allows you the opportunity to bring a diverse group together, and listen to everybody, and really draw on the collective wisdom of the group.

VALERIE WELLAND: So you must have had leaders in the field at this meeting, leaders in the field of CVI come to this meeting to all meet together?

ED BOSSO: Yeah, the group, actually, was extremely diverse. We had ophthalmologists, parents, educators, and practitioners, researchers, many leaders in the field, folks from higher education, and even a few folks from affiliate blindness organizations, all coming together to share their perspectives around the challenges associated with CVI.

VALERIE WELLAND: And why do you use this type of approach?

ED BOSSO: So as I alluded to in the beginning, it's a particularly good approach when you have a complex problem or, if you want to call it, a wicked problem. And that's a problem that really has no one solution. And CVI is really as complex as the brain is, right? And so it's a very complex problem with lots of challenges.

And so this group-- it was an opportunity to bring the group together, and really tap into the collective wisdom of the group, and get various perspectives to think about how we're going to address the challenges that we're facing so that we could lead to better outcomes for children and families.

VALERIE WELLAND: So what was the end result of this meeting? I can imagine there was probably some pretty neat dialogue going on during that meeting, so what was the end result?

ED BOSSO: So the process starts with the triggering question. And for this particular collab, the triggering question, it's well-designed. You spend a lot of time looking at the question to make sure it's going to elicit the most you can from the collective wisdom in the room. And ours was, what factors inhibit children with CVI from getting the care and services they need to achieve positive outcomes?

And so care and services was in there because education tends to talk about services and the medical field tend to talk about care, and we wanted to sure it was broad enough that it pulled in everybody in the room. And so literally, the room of 26 people, in sort of a round robin approach, addresses that question. They answer that question one response at a time, and you go around and back and forth in the room until they've exhausted all of the factors that they could identify.

And this particular group identified approximately 100 factors that they believed were challenges that inhibited positive outcomes. And from those 100 factors, then, you spent time categorizing them, prioritizing those, and then actually spending time through this unique software that has a mathematic algorithm that pairs the various top priority factors against each other to see which influences which. And in the end, it produces an influence map that identifies the deep drivers that are at the most-- would be the most impactful if you addressed them first.

And so we were able to do that and then spend some time saying, OK, if these are the deep drivers, what actions might we take to address them? And the group spent time generating actions in a similar format where every voice in the room is valued and authenticated, and whoever speaks that idea is the author of that idea, and they're the only one that can clarify it, talk about what it really means, because they authored it. And we generated almost 60 actions--


ED BOSSO: --for the group. And so the result was really walking away with, I think, everybody in the room having a deeper understanding of the challenges that faced us from different perspectives. Because we had the medical field in the room. We had researchers. We had higher ed folks. We had practitioners, parents-- so everybody got to see different perspectives.

VALERIE WELLAND: Wow, that's very interesting.

ED BOSSO: And so I don't-- I think the result, the tangible results are we have this information, I think the far-reaching results are we brought together a group of people that aren't always unified and brought them together in a room where we were there for a common reason, a common cause, and hopefully understanding that we're in it together and we listen to each other. I think that's another impactful result.

VALERIE WELLAND: It's always great to see another perspective, because you can-- as a parent, you could get in a tunnel, and you're not seeing what the doctor might be going through or what the school teacher might be going through. So to be able to get all those perspectives, definitely, would probably be helpful for the parent, especially.

ED BOSSO: No, actually, for everybody in the room, because we benefit equally from understanding the parent's perspective.


ED BOSSO: And the parent benefits from hearing the teacher, and the teacher benefits from hearing the medical doctors. So it's really-- the value of it is everybody hears everybody's perspective.


ED BOSSO: And again, arriving at a deeper understanding of the issue, the challenges, and possible ways to attack those challenges.

VALERIE WELLAND: So you have that you have a game plan now, so what is next?

ED BOSSO: So I mean, there's a lot that can happen. The collab is not and ending, but rather a beginning, right? It was an opportunity to bring a pretty diverse group of people together to identify areas of need, areas of challenge. And it's really up to every single person in that group to lead there and decide, what action are they going to take? Perkins did it for the purpose of helping us to set our-- chart our course, path forward. And so--


ED BOSSO: A number of things will happen. We looked at the major pieces on the influence map, the actions, the factors, and tried to sort of look at what would be the most impactful pieces of work we could do here at Perkins. So some of the work will be local, if you will, where maybe it's not in collaboration with others, or it's in smaller collaborations.

The other pieces we identified, we identified some key areas that we needed to look at. And we're going to advance those through our next-- our fifth annual CVI symposium. The symposium this year will take a little bit of a different look. We've developed strategic intents around four critical areas, and those areas will be ones that we have panels talking about in the first day, and then, in the second day, workgroups coming together to really look at how we're going to address these strategic challenges.

And so that will happen. It's an opportunity to really engage in collaborations. Again, Perkins can do some things from here where we sit, using our resources, our expertise, our knowledge, but we're not going to solve it. This is such a complex problem, it's going to require that we engage in partnerships and collaborations.

And I think there's lots of-- what's next? It's an infinite list of things, right? We need to think about resources, and a research agenda, and, you know, a web presence. And how do we reach out to these populations that are in need and get services, and training, and education of people so that families can get what they need.

So the list is almost daunting and endless in some ways, but the way we're taking our approach to it is looking at those highest-priority strategic areas that we wanted to look at first, and we'll look at those first, and then we'll keep whittle away at the list. And I think somewhere on the horizon is Perkins becoming a center of excellence. But that's a little ways off, and we've got a lot of work to do.

VALERIE WELLAND: Sounds really good, and everyone is on board with it. So you have, at the end, it's all benefiting the child. So--


VALERIE WELLAND: Everybody is focused towards that, and so it should be successful.

ED BOSSO: Well, we're trying to create a unified approach, if you will. There is-- clearly, when you have an issue this complex, there are diverse perspectives. And sometimes, you know, those perspectives and the diversity of the perspective gets in the way of progress, and with no mal intent right? It's just it happens.

And the message Perkins is trying to send is that we're stepping up. There's a gap. There's a need for leadership, and there's room for plenty of people to lead. But we're stepping up because we believe there's an opportunity here to do some things that will change the lives of children and families that are struggling with CVI. And that's what Perkins has always done. And so we look forward to the opportunity to work with whoever wants to come to the table in a collaborative way and advance the agenda.

VALERIE WELLAND: It certainly sounds like this symposium is going to be a great place to continue that, too, with the different tracks you'll have.

ED BOSSO: Yeah, I think it's a huge opportunity. I think it's sort of an experiment, if you will. We've not done one like this before-- I mean, bringing a group of, potentially, 180 folks together and trying to focus them around, maybe, four or five strategic intents, and get them to stay focused and generate some thoughts, and use their collective wisdom to figure out how we take the most strategic actions to advance the agenda in areas of higher ed, assessment, parent education, advocacy, and research.

There's a lot of work to do, but there are four main thrusts, and I think that-- I'm very optimistic that it's going to be a successful endeavor And then, we have a plan to carry on the work after that symposium ends.


ED BOSSO: And we'll be finding ways to share that work and keep people engaged throughout the year until our next symposium.

VALERIE WELLAND: Oh, that's great. It's going to be interesting to see how this goes throughout the year.


VALERIE WELLAND: Thank you very much. I know your time is precious and you're a very busy man, so I really appreciate you coming down and speaking with me today.

ED BOSSO: Of course, it's my pleasure.

VALERIE WELLAND: If you are interested in being part of this and want to help break down these challenges--


--please join us at the fifth annual CVI symposium, July 11 and 12. Information regarding the symposium, including registration and accommodations, can be found on our website, www.perkinselear ning.org/symposium. As always, thank you so much for listening today, and we will see you next time.