Sylvia Pelletier (00:02.476)

Welcome to today’s podcast. I’m Sylvia Pelletier, the Director of New Hampshire Family Voices. Today we’re going to be talking about the Council for Youths with Chronic Conditions, or CYCC. It’s a state advisory council. The council has a particularly strong representation of parents and is directly connected to the history and intent behind its creation. To understand that history, we need to go back to the beginning. Before CYCC became the advisory council we know today, there was a group of people who came together around a different but related question. How do we create a program to provide family support to families who need it, but are not eligible to receive that service through New Hampshire’s developmental services system?  In this episode, we’re going to go back to those early days with Terry Olson Martin. Terry’s the former co-director at New Hampshire Family Voices and will share her invitation to serve as a member of the Governor’s Task Force. Terry will help us to understand what was happening at that time, what the group was trying to accomplish, and how those early efforts evolved. Welcome, Terry.

Terry Ohlson-Martin (01:14.645)

Thanks, Sylvia. It’s great to be here.

Sylvia Pelletier (01:17.602)

So Terry, can you take us back when you were first invited to become a member of the governor’s task force? What do you remember about that invitation?

Terry Ohlson-Martin (01:26.069)

Well, it’s funny, we I had planned for this question and it got me thinking more about the actual invitation, and it’s kind of humorous to me because at first I refused to join and had to be convinced. And and I think the refusal is really important. This was supposed to be a way to get services for families who didn’t qualify already under the developmental disabilities system. I had seen over the course of my work that a lot of families who had kiddos with different diagnosis, like whether it be epilepsy, spina bifida, cancer, so many different things, were struggling. And they were struggling in the same ways that those of us struggled to have kids with developmental disabilities, but they didn’t have any access to services. So it was really eye-opening for me.

And when they asked me to be on the task force, they kind of tell you ahead of time before they send you the formal letter. And when I was told I was going to get the letter, I was like, no, because that’s not my kiddo. but I was convinced that because I was so passionate that there needed to be something for other families, that that’s why I should be on it. And I was also reassured that there would be a lot of other families on the committee who had those kiddos because I felt that they needed the voice and they needed to be able to explain what it felt like to not be able to get the support.

Sylvia Pelletier (02:54.853)

So at that time, what did you understand the task force was working toward?

Terry Ohlson-Martin (02:59.999)

Well, we knew that there were already three programs that were being funded. There had they received some Robert Wood Johnson money through the Hood Center at Dartmouth Hitchcock. But the hope was that a system that a program would go statewide. I say system, it should have been a system, but it really wasn’t. It became a program. but that there should be services available statewide for families. And the council or the task force at the time would be helping to set it up so that the 12 different regions would have some oversight from other people that the task force could help advocate for that group. Of course, we all had a lot of different ideas, so we had to come together and kind of hash that out and try to figure out how it would work best and how families would benefit the most from what we were setting up. It was really it was really cool to be involved in something that could be so impactful for families.

Sylvia Pelletier (04:03.234)

So who were some of the key people that were involved in this group that came together?

Terry Ohlson-Martin (04:08.723)

It was a pretty impressive group. I remember it well because it was also a time when my son was having some seizures that we weren’t able to control and I was pretty emotional. So it was one of those the first meeting was one of those meetings where I felt I was out of control emotionally and that’s not normal for me. So I could actually even probably tell you where everybody was sitting that day. We had legislators, we had Sharon Nordgren, who was a key legislator at the time. We had Don Chumway, who was top bureaucrat at the time. He’s the director of the Bureau of Developmental Services. we had a lot of families. We had physicians, Saul Rockemacher and others. It was a big group. but the most impressive part to me were the number of families that came, most of them who had not been involved in other projects like this, and they were very vocal about what they didn’t have for support and what they needed. I remember one family in particular who was really struggling to get child care for her kiddo who had a pretty serious seizure disorder. And she just did a great job in explaining her needs.

Sylvia Pelletier (05:34.392)

So what were the conversations? I think you it’s such a diverse group that you’ve just, you know, kind of identified. What were the conversations that were happening from those different perspectives that made it clear something had to be done?

Terry Ohlson-Martin (05:48.511)

I think the frustration from the families because they were able to explain it so eloquently, they didn’t want somebody to do everything for them. They just needed a little lift up, and I know that the bureaucrats and the doctors and you know, everyone else had been hearing that from families. We even had a blue cross representative there at the time and they were a big insurer in the state way back then. So that people were aware of the need. They just weren’t sure how to set it up. And I think, as is always the case when you’re setting up a new program, there was some fear about what the costs would be, and sometimes costs are negligible. It’s just a matter of getting people connected with the right people. And there really wasn’t anything for these families. Some of them had very specific diagnosis specific organizations they could go to, but they were not always local organizations. They didn’t understand our system.

So in talking together, we were really hopeful that we’re gonna be able to set something up in each region for families so that kiddos who had chronic health conditions would have the same or similar kinds of access to what those of us with developmental disability kids and developmental disabilities systems had.

Sylvia Pelletier (07:43.446)

I think it’s really interesting that you describe, you know, your personal connection to the developmental services system and the efforts to create a program, a statewide program. Were the was the new program that was being discussed and and pondered and thought through by all of these in some way modeled after that developmental services system? And if so, how?

Terry Ohlson-Martin (08:04.445)

It was in the sense that we wanted it to be regional. We wanted it to be statewide. But there was some very real concerns about having it as part of the DD system because many families, and this is just an ongoing issue with a lot of families. We look at other families and go, wow, your situation is so much worse than mine. And then we feel like we can’t ask for anything because that poor family needs more. And that would really keep a lot of families with kiddos with chronic health conditions from accessing services. They also knew who qualified for the DD system. And so changing that definition and getting families to get the services we felt was going to be really difficult. So while it was modeled in that it would be statewide, there’d be regions, we at first really didn’t want it to go through the DD system. We were looking at VNA’s. Those kinds of health providers, we felt that was more appropriate. And we really, we also knew that we didn’t have the same mechanism of funding. So we were trying to figure that out. There was going to have to be a different funding stream than how the DD system was funded. So there was a lot to consider. Looking at the DD system as a model for what we were doing was helpful, but we also recognized that there was some really significant differences between how the families receive services. Families who have kiddos with chronic illnesses are also more episodic users than they are daily users not with all families with chronic illness, but there’s a lot of them. so families would come in and out of that system and that had to be okay.

Sylvia Pelletier (09:51.118)

So was there some intention in terms of ways in which families would be engaged in the ongoing that was similar to the development build services system, you know, so that you could, I guess, more consistently and proactively meet the needs of those families. How how was that structure?

Terry Ohlson-Martin (10:09.067)

Well, I don’t know if you mean in an advisory capacity. So we had each of the councils, each of the regions were supposed to have family councils that would have families involved. Those families would be actively involved in how the program was run, but they could also spread the word, sort of, and do outreach with families, not formal outreach, but if they met somebody at the doctor’s office or at a support group or something, they would spread the word about the way the program worked. The governor’s task force also was to always have families and there was to be a linkage between the governor’s task force and each of those regions so that each region would appoint somebody or you know put forth somebody to be on the governor’s task force. And when we put together the formal outline of the task force which became the council there was one seat for each of the councils so that we recognize the differences within the regions. You know, what it’s the same with the DD system. What happens in region one is not necessarily the same thing as what happens in region four or region eight. So we really wanted to have all the representation at that top level. And that’s also more people that understand the program and can do more consistent marketing for the system.

Sylvia Pelletier (11:36.184)

Think that’s really helpful to recognize that it was an intention, a real intention to make sure that the what is now CYCC had the representation of the regional councils so that they really had an understanding of the diverse needs of the families who would be served, not only from the perspective of their child’s chronic health condition, but also regionally across the state, as resources vary greatly, as you said, from region one to you know region four.

Terry Ohlson-Martin (12:03.433)

Yeah, yeah. Well, and the other thing that was really important to us at the time was that there wasn’t an crossover. And by crossover I mean if you had a child who qualified for the D D system, you would not qualify for services under the partners and help, what came to be the partners and health system, or the task force because that system was already established. We, meaning my family, already had access to services. And when I looked at other families, who had kids with chronic illness, they didn’t have access, so it didn’t make any sense to me or to other families, any of the other families at the time, for you to be able to so-called double dip. You should only be qualify for one. Because if you had a chronic illness and a developmental disability, which my son does, I still could get the services that I needed through the developmental disabilities system. They didn’t preclude me from getting the support because It was a chronic illness. So that was really, really important to all of us.

Sylvia Pelletier (13:08.686)

So you’ve talked a little bit already about what that partners of what the program which came to be known as Partners in Health was trying to accomplish. Looking back, what do you think they got right?

Terry Ohlson-Martin (13:20.223)

Well, I think we got a lot right and unfortunately we got a lot wrong too, but that’s what happens when you develop something. I think what was really important and we did a good job at was having it in across the state. You know, every area of the state was covered. If somebody was looking for support, they had a kiddo with a new diagnosis, you knew where to send them. And that was really critical. I think the other thing that we did right was we had really active family councils in a lot of places. Not in every region. Some regions really struggled. Some regions did a fantastic job. I don’t think they always had the support in how to set up those councils. Staff members were trying to do a lot of different things. And I think that for some, you know, if you’re really good at one thing you may not be good at the other. So while you may be really good at supporting a family member, you might not know how to pull together a group in a in a leadership manner and support them as well. So I think that was a struggle for some regions. I think the place where we really messed up, in all honesty, is when we started allowing families to be in both systems. And my personal belief is that was wrong.

Sylvia Pelletier (14:43.086)

So today, right? So when I think about you’ve been around a long time, you’ve been here since the beginning of time with this with this program. You know, and so today the council is known as Council for Youths with Chronic Conditions. I think, you know, for those who aren’t aware, that’s really and it’s a rebuilding year, you know, and really working, you know, to really embrace its initial intent and purpose and to be that voice for families, what would you say the opportunity is for families who want to be engaged or who want to make a difference when something already exists?

Terry Ohlson-Martin (14:49.353)

I’m ancient. I’m older than dirt, they say.

Terry Ohlson-Martin (15:22.667)

I think this is a great opportunity. Families need to take a hold of this council with both hands and organize it in a way that meets the needs of their families. I struggle a little bit with the new title because this was not about and it’s not a new title, it’s been around for a few years now, but it’s not just about the youth, it’s about the families. You know, when you have someone in your family who has a special need, it affects everybody and yes, the primary person is the youth or the child, but if you leave out the families, that’s a big mistake. I think that the families coming together and saying, look, this is supposed to be set up to help families who can’t get services from the DD Council, and it should be available to everybody in the state, you know, bang on the doors, go to the legislators, talk to the bureaucrats. Scream, yell and holler politely and nicely because the other way doesn’t work. I guarantee it, I’ve done it but try to get this organization or this task force, whatever you want to call it, back on track to meet the needs of those families who don’t qualify for services under the DD system. And yeah, you might have to look for some funding. You’re gonna have to gather some data, you’re gonna have to prove some points and talk to some families, but to not have this system in place after so many years of working on it to me is a it’s just a travesty. It it’s awful. We worked hard for it. It was well used by families. I used to do trainings at some of the task force and those families were dynamite and I think that stuff should still continue. and those families need the supports. And it was great for helping kiddos transition kids who were learning how to take on their own healthcare. That’s a big deal when you’ve got some significant healthcare issues. And when you have the capacity to learn how to do it yourself, you absolutely should, and I even, you know, I had a family member who worked in the system and her son came to one of my sessions and when he left, he went home and he told her, Mom, you’re just the coach now.

Terry Ohlson-Martin (17:43.636)

Or maybe it was the referee, I don’t know what it was, but he’s like, I’m taking charge. And he really did take over. And I still keep in touch with this young man and he’s done amazing with his own health care. Does he call his mom every once in a while and say, I don’t know. Yeah, but all kids do that. You know, they just they need the support. And the kiddos with extra health conditions, as I call them, should get the extra support. And this system or this program could become a system to do that, and I hope it does.

Sylvia Pelletier (18:14.126)

I think it’s an important sort of marching orders, right, to the families in the in this generation. Again, I’m feeling a little old as we sit here and have this conversation, remembering it the early days of the program. But I think anytime we have a seat at the table, we have potential still, right?

Terry Ohlson-Martin (18:29.545)

Yep. And if you don’t do it, if you don’t take it on and do it, it will go away, and then years later somebody will come along and they think they got a great idea. You know, it’s like, yeah, we had that great idea 30 years ago and we did it and then it fell by the wayside. So don’t let it fall apart. You know, pick it up and keep it going.

Sylvia Pelletier (18:50.51)

You think it’s an important point. I mean, the story of CYCC is ultimately really a story about people coming together, right? It was and you described a diverse group of people. It was families, it was advocates, there were healthcare professionals, there were leaders who believed in this and who worked together to make it happen. And I think as long as the council exists with those slates of, you know, membership that still include that kind of membership, there’s an opportunity, right, for them to continue to leverage those voices to continue to serve families.

Sylvia Pelletier (19:19.832)

Who have youth with chronic health conditions, right? And to address it, I I think your point is really well made about not forgetting the families in this. And it’s really those families who are the who are often the drivers of that change. What a powerful message for all of us to think about to make sure that families who don’t have access to services within the developmental services system still have that program, that place to go for family support. I appreciate you know, you coming to share this history with us today and to help us think about ways to keep that work moving forward as a council.

Terry Ohlson-Martin (19:57.996)

Know it was a lot of work, but I gotta say it was also a lot of fun and I made some really great longtime connections. So I would encourage people not to shy away because of the work, because you get you get a lot out of it too. And there’s the pride, you know. It I felt really good to see what we had put in place and that families could access these things and knowing that you had a tiny little part in it really makes you feel good. You made life a little better for somebody else. So I would encourage families to step up, you know, put your hat in the ring and go for it. And it’s okay to disagree with other families. That was the other thing that, you know, you see a lot is families don’t all access things the same way. They don’t all always feel the same way about things, but that’s okay. You just respect one another and make sure that you can meet people where they’re at.

Sylvia Pelletier (20:47.054)

Absolutely. So families are out here listening today and looking, saying, what is that task force and what is CYCC? If you’re looking to get involved and you think you’d like to know more about it, feel free to email our current admin at admin@nhcycc.org or call us at New Hampshire Family Voices. If you’re a passionate parent or caregiver, you want to know how to make systems better for your family and your child. There are a lot of advisory councils. There are regional councils. There are statewide councils where your voice and story can make a difference for your family and for others like them.

Thank you, Terry.

Terry Ohlson-Martin (21:25.301)

Thanks for having me.