Advocacy is hard work. This week’s interviewees explain some of the methods they have used throughout their careers to elevate the the voices of consumers in order to raise awareness, develop solutions, and help folks navigate health systems. Their patience, determination, and genuine desire to unite consumers to seek change through everyday advocacy helps inform our ethos at CCHI. Read along and hear from Christy Blakely, Barry Danielsen, and Sharon O’Hara below, and then don’t forget to donate this Colorado Gives Day to ensure CCHI can keep championing the consumer voice in health care.
Christy Blakely, Board Member
What do you do on the board, and what is your role at CCHI in that capacity?
Christy: I’ve been on the board less than a year, and I worked with CCHI in my previous role as Executive Director of Family Voices. We advocated for children with special health care needs and worked both at the capitol and with families navigating health care systems. So when kiddos are identified or they have health care concerns oftentimes families are met with, “how do I go about filing an appeal”, or “where do you I go about answers about medicaid” or whatever it is. So we at Family voices advocated for those families and then when we saw big gaps we would either take it to policy or we would work with partners such as CCHI and work with them. Or when they had something going they would call us because we had access to families that were impacted by many of the things they were doing and we would work together on those cases. I was with Family Voices 15 years and during that time we were able to pass one of the largest influxes of kiddos thanks to tobacco tax into the medicaid waiver program. That is, children with developmental disabilities (DIDD) and/or physical disabilities, children with health care needs. Families often come into this arena with a kid with special needs but they don’t understand how strong their voice is. They don’t understand what their voices can do. So we would also teach families that role of leadership and work with them. We would help them, train them, and educate them to be able to testify at the legislature or to write letters, or what it meant to have medical necessity, and how to ask for things in writing. You know, all of those kinds of things, which is part of what CCHI and their Consumer Assistance Program is now doing. So I helped think through setting up that in the last year since I’ve been on the board. To see a consumer assistance program come alive is a huge thing. I really feel strongly because families need that and it doesn’t matter if it’s a family or a senior, or anything in between. Families and individuals really need help navigating the health care system.
What do you think your personal role is on the board? How do you fit in to the group?
Christy: I am the humor, and the content area expert. Having directed a non-profit about the size of CCHI, I align myself and understand what Adela is going through, and that’s a lonely road. But I also feel like on the board I need to bring some levity. Because even though it’s serious work, we don’t have to be serious 100% of the time. So I tend to bring a little levity and fun. I just have a wacky way of being, from being a multi-tasker. I walk this walk. I have an adult daughter with significant disabilities, and she lives with a significant other, so I have a son-in-law that I support, and he’s also in a wheelchair and uses some technology to talk, and all sorts of equipment. I support my dad who’s an elder, at 92, navigating the system. It’s part of what I do in my life, so I try to keep us focused on the real world. What those of us in the trenches experience in health care and policy and everything else. I don’t know other than I do understand what they’re doing, their goal and mission, and how hard the work is. It is very hard work. But I also want to give them kudos for taking this work on and for being there to speak on behalf of all of these people that don’t think they have a voice.
Have you learned from your work about how to unite consumers as a whole into a powerful force for change?
Christy: I’ve done some wonderful things that were wonderful successes. And it was lots of fun. Always with a team of people, not just me, and I don’t ever want to just take that credit for what it took a team to do. Everyone needs health care. It’s part of what we do. So thinking that way, what I often helped legislators understand was when we were talking about there are 500 or 600 kids waiting to get on a medicaid waiver, I was breaking that down for those legislators so they could understand those kids aren’t just out there. They have a face, they have a name, they have a diagnosis, they have a family. And that family may lose their house because of a diagnosis. So we would inundate them with books with 8-10 kids per book, color photos, one paragraph (so the depth of a birdbath on who these kids were) but they were holding signs saying “I’m number 112”, or “I’m number 55”, so that these legislators could digest that it wasn’t just this block of people. These were actual kids. They were cute kids that had dreams and hopes and love in their family. But these families couldn’t do what they needed to do because they couldn’t get on Medicaid, which then gets rid of balance billing, and copays, and some of the things that were causing families to be in financial distress. So helping people that are making decisions understand the personal side of it, and doing that in less than an elevator ride is a trip. I always said I picked an easy population, because kids sell. But at the same time, depending on the listener, it might work it might not. But giving them an actual understanding of who people are, and how they aren’t getting the services they need was critically important to passing that piece of legislation.
So you unify people by focusing on individual stories. What’s an example?
Christy: I just recently, this past week, sat down with an older girlfriend who had a medical event. She’s been healthy all her life, and she just retired and suddenly had a medical event, and went in and out of the hospital, tugged around and pointed in all these different directions. She finally did get it resolved and is healthy again, but during that time I happened to be very busy and I couldn’t be with her. I felt very bad as a friend. So at one point I said “I’m really sorry I can’t be with you and do that but I’ll be there when your bills come in, because I know you’re going to be overwhelmed.” She did not appreciate that at the time, she didn’t understand it. The bills came in and last week we sat down 3 times and called the hospitals, and the insurance companies, and to find out what her out of pocket was, how much she had paid to date, and she was just stunned, saying “I had no idea. This is so not my niche. I didn’t understand what it took. This is what you’ve been doing all these years?” She was totally, totally, stunned. I share that with you because but for one event, that is exactly how things happen. But for one event.
How do you think we spread the word in that way?
Christy: One of the things that CCHI does is they have a Health Care Day of Action, and that day is a very effective day. I see people come and bring people the next year. When someone has an issue that they feel strongly about, that’s when they initiate and motivate. For me, it wasn’t as much my daughter and what we needed because the waivers were there for us. There was no waitlist, and we’ve been very blessed with getting services. But I felt like I did this work because I was one of the lucky ones. I had a significant other that stuck by me, he could have run out the door at any moment and probably wanted to, but he didn’t. I spoke the language and I had a masters in special education before I ever had her. Helping other families understand how their voice can matter is significant and that day at CCHI is sort of what we used to do with Family Voices. We took a bunch of kids down to the capitol and the legislators that weren’t being real open with us and accepting, we just gave every child on the waiting list a red balloon, and so as they came out of the session, I would just say “Every child that’s waiting has a red balloon, can you see them all?” and all over the capitol you could see all of these red balloons floating, and I’d say “That’s it. Thank you.”
You do a lot of parent advocacy trainings. Can you describe a success story from that experience?
Christy: It’s connecting the dots. It’s putting people together and being a connector. But it’s also making friends along the way. But for somebody before me that raised a kiddo similar to Lauren, I learned from that mom. I hand back and try to help as other people are learning and having a child with special needs, it’s a club you never want to get placed in, quite honestly, but once you’re in it it’s pretty darn cool, because there’s a whole lot of people that you can bond with other seconds, because they are walking that same walk, or have walked that same walk. I work nationally with parents to do leadership in early childhood, and some of that is as simple as “Don’t be afraid. Your Medicaid isn’t just this big building, it’s actually people and they actually have children, and they actually are humans.” They’re not just this big entity, so get to know them, talk with them, because what you’re trying to do in increasing early childhood screening is exactly what Medicaid wants to do, and they have a report that shows how bad they’re doing, right? So we can work together to find that connection, that glue. It is critical to then getting on the same page and working together.
Do you identify as an advocate?
Christy: Yes! I actually worked for Colorado Medicaid at one point, and I was a parent. I had parent, advocate, and Medicaid on the same card. I always joked about how I should have gold plated that business card. But I do tend to speak on behalf of families. I just want to make life better. Having a kid with special needs is hard. Fighting the system is way harder. Understanding how it works helps along the way. Does that mean everything goes smoothly? No! But it sure does make a difference when you know at least what question to ask that might open the hidden door. As wonderful as this is, it’s also exhausting work, and raising a family and doing that work was a lot. So it’s one of the reasons why I advocate for people who come into my life. Like I bought a house, and the man who inspected the house had a picture on his laptop come up. So I said “Oh, is that your sweet little guy?” and he said “Well it was, he died.” A few minutes later he shared with me that he was still fighting the bill for Flight for Life even though his child didn’t live, and he had a $30,000 bill. A couple weeks later I was able to work with him and Childrens’ Hospital and the flight company, and got that bill taken care of, so one by one we make change. One by one. They find me, I don’t find them anymore. It’s kind of funny.
Have these experiences shaped the way you see issues outside of health care?
Christy: I see problems and I want to fix them. I see solutions and I want to implement them. I’m not necessarily in a place where I can do as well as I did before which makes me sad, but at the same time, I know that I can impact people’s lives by some of the changes that I can make or calls that I can make, or lessons that I can teach them. I just want people to understand that there are solutions and answers that are more positive than “No.” I’ve never been one to take no for an answer, it’s just not an option.
What is something that keeps you hopeful after so many years of advocacy work?
Christy: Unfortunately, children with disabilities continue to be born. Right now we don’t have any waiting lists for our waivers, and some of what we did in breaking down those barriers of waiting lists have been followed up through community center boards and other advocacy to make sure that we don’t have waiting lists again. But I can only hope that as we move forward we continue to work and hope to have a positive outcome as we see change. And we’ve seen change over the years. We can look back and see the change! In my daughter’s world, she has a phenomenal life because of consumer directed attendant support, because of some of the things that have been passed, she has a choice every day for what she wants her day to look like and the people who are going to surround her, and what she wants to do, and that’s a blessing for her. So from that standpoint I think it’s remarkable. She wouldn’t have that in other states, so it’s a blessing that we’re in Colorado and that she can have that kind of life, and I think her significant other also has a better life with them together! I’m always hopeful. I’m blessed with two grandbabies and I am just so thankful for those guys.
Why is health care reform so important?
Christy: It’s really hard to sell advocacy and have people understand, because everybody understands it from their scope, from how their life has gone. So to have someone understand how health care is or was 10 years ago and what has come is almost impossible. What I can do is explain to you how mental health today is very much how health care was 20 years ago. That means I put mental health up against medical health and I say: “Look, show me how you can walk without the use of that walker even though you need the walker to walk.” But in mental health we say “Show me how you can be healed in a week of therapy”, and then we discharge and then the person goes back to the same pattern and we say “why did that happen?” Right? It’s very much the same sell, mental health and understanding what we need to do as health care to people that don’t necessarily understand. Getting that message out, and giving somebody a burn in their belly is really hard to do. But the people who do it, like the folks at CCHI, are amazing because they understand what it takes.
What do you see as your advocacy methods?
Christy: There’s more than one way to do advocacy. I could chain myself to a bus and get the point across, I could cause violence and get the point across. But at the same time, I’d rather do it with red balloons, and pictures of cute kids, and working within the system to figure out enough about the system to understand how to get the cause into the system and that’s always been my way, my method. We fight in all different ways. We all do advocacy. We’ve all returned something at a store. That is advocacy. Right? And we all know the process. We know we have to have a receipt, we know we have to be within 30 days, we know we have to stand in line at customer service. We even know where. But then when we say, “Ok, how do you advocate with your insurance company?” It’s crickets. We don’t know. We haven’t had to experience it, therefore we don’t know the process.
So your work is trying to let people know advocacy isn’t that hard?
Christy: Yeah! Insurance is counting on us to go away, or pay over what our maximum is because we didn’t know there was a maximum, because we didn’t read our book. It’s letting people know that you believe in them that they are capable of handling something like making a phone call on their own. My dad always said, “Everybody’s the same, you put on your pants like everybody else”. That’s been my attitude. Why is somebody better than I am just because they have a bigger job? I feel like my job’s pretty big. Taking care of people. I don’t go in with fear, I go in with “let me show you what we can do together”. It’s a better attitude.
Barry Danielsen, Board Member
How did you get involved with CCHI?
Barry: My career has been in commercial real estate, and I had a consulting practice for 20 years where I advised brokers, investors, developers on financial aspects of commercial real estate. More recently my wife and I have worked on our own re-development projects and we have some investments and properties that we’ve redeveloped. At the same time over the years I’ve served on 3 different non-profit boards, Saint Anne’s Episcopal School in Denver, the High Mountain Institute in Leadville, and Big City Mountaineers in Golden. I think that is probably why there was some interest in me connecting with CCHI. I had dropped off all of those boards on purpose because I was starting to get burned out. Michael Booth knew that and got in touch with me and we started to explore CCHI.
Why were you interested in us specifically?
Barry: Health care has always been a bugaboo for me and my wife. I used to get health insurance through my corporation way back when in the initial years of my career, and my wife had a printing company, which was big enough where she could go into the market and get group insurance, and then she sold that company in 2004. And we thought health care was the least of our concern. We thought, “we’ll just go buy health insurance” and it was like, “uh, no you won’t!” That started an over a decade-long education for us on pre-existing conditions and all these things that you have to do to sort of game the system just to get coverage for yourself. It’s extremely complicated, and we had the education, the money, and the time to deal with it and it was really difficult. It’s an issue that affects everyone. It’s a problem for everyone.
Having taken a hiatus from board service, I started thinking about where I wanted to focus my time. I was looking to get involved with something that affected everybody, and health care inequity is hugely unjust. So the people who don’t have access to health care or insurance, they are eventually going to need it and when they need it, the chances are good that their lives are going to be financially destroyed. Not to mention that they don’t have the benefit of consulting with a physician or someone in health care about living a healthy life. It’s a sword that cuts so badly against people who don’t have access, and it ain’t right.
Were there any lessons you learned from that experience on what is empowering in navigating that world?
Barry: You have to learn the system to find your best options. It’s time consuming. But most people, especially those who get their insurance through group policies at work, have no idea how easy it is for you to be considered to have a pre-existing condition. It doesn’t take much. It’s shocking.
Did you have any eye-opening experiences around the ACA?
Barry: It’s a good start but it’s not where we need to be and I think it’s getting worse. From a consumer standpoint, the options are starting to become more and more limited. It’s a good start but it’s still pretty broken.
Do you have any specific goals for your time on the board?
Barry: I am looking forward to learning more about policy and advocacy, things that are not my strength. I definitely will be involved in finance and governance.
You’re involved in business. How can we bring these ideas that everyone has the right to have access to health care and live a healthy life to business? Health care is so centered on money. How can we bring ideas of justice and fairness into this world?
Barry: People who are in business and have their health care set aren’t really thinking about what it would be like to not have that set. Storytelling can help that. Everyone has some sense of empathy and can put themselves in a situation like that. That’s how you get to people.
It can happen to anyone, like you’re going in for a routine surgery and all of the sudden you get a $5,000 bill. I mean, what? It’s just crazy.
Why should folks support CCHI?
Barry: I think CCHI is doing work that not a lot of people are doing, advocating for specific health care policies. They are in the weeds fighting for positive change that can benefit all of us. They do good work that really matters, and I think their story tells itself.
Sharon O’Hara, Board Member
Can you describe your role on the board?
Sharon: This is my second time on the board. The first time I was asked to be on the board it was to be a voice for people with chronic disease. I was working for the national Multiple Sclerosis Society. From that experience I went on to to be a board member at Connect for Health Colorado, the state marketplace. I’ve come back to the CCHI board and I’ve been here for about a year now. The role that I serve now is to help build the strategic plan, and work on governance issues, which includes recruitment of board members. Since I was fairly new to the board, I have tried to be helpful and supportive in those areas that I know something about, which include personnel issues and strategic planning. Our Board is recruiting expertise and different skill sets to diversify the conversation.
Why do you choose to work with CCHI?
Sharon: I am enthused this second time around with the idea of the Consumer Assistance Program. This program is key to moving CCHI to the next level but also making its impact broader in the community. Advocacy can be a nebulous field, and real authentic stories and experience with real life issues gives gravitas and importance to the work. I feel strongly that there needs to be a strong advocacy group to help consumers have a voice about their own health care issues of affordability and access.
Would you consider yourself an advocate?
Sharon: Oh yes. I’ve always leaned in to helping people. I am pretty old, and I was in one of the few states you could vote at 18 before everybody could, and got just hooked into the whole area of advocacy. I worked in Kentucky to update the state constitution, I was involved in a number of political campaigns, and find that advocacy charges my battery.
What does it mean to be an advocate in your life?
Sharon: In my own way, advocacy is finding those opportunities to influence and impact public policy. Not just to have your own agenda but to listen to others’ agendas, try to find a compromise, and try to seize the opportunity to make it happen. I’m not one of those people that has “one note”, and no matter where I am I play that note. I try to weave certain things to conversations and jump on an opportunity when it presents itself. For me advocacy is really looking for those opportunities. There are opportunities out there and you have to look for them and be ready to pounce on them. You can only do that if you are open to conversation and listening.
How does looking for those opportunities impact your hopes or goals for the future?
Sharon: There are two things that I really have been paying attention to. First, is engaging people with chronic disease(s) and their caregivers in advocacy. That is hard because their lives are often complicated. As a result, second is realizing their lives are complicated and giving them support. Without a support system around them training is a hollow effort. A support system is looking for ways to make it easy for people to be an advocate and look for them to have a success early and often. Writing an informed letter or making one phone call is just as important as testifying.
Do you have any past experiences where you were successful in that way?
Sharon: The state’s Public Utilities Commission (PUC) decided there would be a higher rate for summer electric usage, which would have a disproportionate economic impact on people with chronic disease. I wasn’t even aware of the change in the electric rate, and someone with a chronic disease called me and told me of the rate change. I worked with a small group of people to successfully pass legislation, and then worked on the implementation, which was a much heavier lift. Today more than 1,000 people get a discount on their summer energy bill. That was a 3 year process, working with a group of advocates, keeping them engaged and not only passing legislation but the rules through the PUC. I don’t typically give up. I’m pretty tenacious and keep trying to move the ball forward, and advocating at the PUC (Public Utilities Commission) to accommodate a a medical exemption electric rate was very tangible. People benefit who would be seriously impaired in their own home or daily activities.
Do experiences like that shape how you see the world or other issues?
Sharon: I am always asking how I can help get an authentic voice to the table. I’m not one who’s out there speaking. I like to others to speak. So, I think that’s more of my lens, how I can identify who the authentic voices are and make sure they’re in the room and well prepared when the discussion is happening. I like to push other people to the front.
Is there someone in your life that helped to shape your idea of advocacy?
Sharon: When I first got interested in the political world I was in Louisville, Kentucky. There was a group of women who came to our college and chatted about public issues and I thought that was very interesting. They took me under their wing and were very encouraging. We lost the first three things we worked on but I was always impressed with their optimism, that we can still make things better. The second thing that really influenced me was when I was working in Appalachia in Kentucky. I was sitting on a stoop with a young woman who had several children and was younger by a couple of years than me. I was 21 and right out of school. My job was to sign up her children for an early childhood program. She looked at me and said “You have no idea what my life is like.” I looked back at her and said, “You’re absolutely right.” That’s when I realized that I’ve got to listen better to what people say they need and want. I thought she would totally embrace this offer. My view was about “me”: If I was sitting on a stoop in Eastern Kentucky and somebody in a suit came up and offered a program, I would take whatever that person had to offer. That was not her mindset, because she didn’t think I appreciated her life and she was absolutely right. What am I doing telling her that this would be better for her kids when I didn’t take the time to understand what she thought might be better for her kids! Her comment back to me really resonated with me. It was an eye-opening moment in my life. It changed the way I start conversations now, with “tell me a little bit about more your life.” It’s a pretty powerful lesson, and I am glad it came early in my life.
How did you see that lesson play out in the rest of your work?
Sharon: I think it’s most probably the authentic voice concept; helping people find a way to express their voice and listening to what they have to say. It may not be what I think is in the best interest of solving this problem but it’s what they think is in their best interest to solve the problem, and that is where you need to start. Thus you start from where the person is as opposed to coming in and plopping down a solution.
Do you see that framework in CCHI’s work?
Sharon: I do. I think it’s going to become even more enhanced and informed by the CAP program. The CAP program is so important for hearing what people’s issues are and letting that inform policy.
Why should folks support CCHI?
Sharon: They are the voice. They represent a broad base of consumers on issues related to health insurance, or medical bills, or cost and access to health care. They are a key player and for me CCHI is a very important and credible state asset.
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