HLOL Podcast Transcripts

Health Literacy

Participants, Providers, and Policy Makers Working Together for Better Care (HLOL #158)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some really remarkable people, hearing about what health literacy is, why it matters and ways we all can communicate more clearly.

Today, I’m talking with Frank Rider who wears, and has worn, many hats. He currently is a Senior Financing Specialist within the domestic Policy, Practice and Systems Change programs at the American Institutes for Research.

One of his jobs before that was Chief of the Bureau of Children’s Services for Arizona’s Division of Behavioral Health Services.

Starting soon after college, Frank was a foster parent for both the Navajo Nation and State of Arizona. Frank’s lifelong commitment to family-driven care builds on all these experiences and perspectives.

Frank and I both serve on the Advisory Panel on Communications and Dissemination Research for the National Patient-Centered Outcomes Research Institute, or PCORI.

I found his story of intertwined personal and professional experiences so compelling that I wanted to share it with you, the listeners of Health Literacy Out Loud.

Welcome, Frank.

Frank Rider: Good afternoon, Helen. It’s nice to talk with you today.

Helen Osborne: It seems that everyone everywhere wants better healthcare. From your many perspectives as a policymaker, a provider, and a participant, are we all talking about the same thing?

Frank Rider: I’m not sure that we always are, but I do think that the so-called “triple aim” for healthcare that has been expressed by the federal government in recent years does give us some language to be talking about the same things.

Helen Osborne: Tell us what the triple aim is.

Frank Rider: The triple aim means that we want to pursue a better experience of healthcare, we want to enjoy better health outcomes and we want to do both of those things at the lowest cost possible.

Helen Osborne: Do participants want that too? The same as policymakers and providers?

Frank Rider: I think so. I think it’s pretty evident why patients and participants would want to have a better healthcare experience and to enjoy better health, but I also think that we recognize that the cost of healthcare is very high in this country compared to that in most other developed countries.

We all share that burden, so I think we do have a shared interest as well in trying to find the most cost-effective ways to address whatever may ail us.

Helen Osborne: Frank, you and I were talking about you being a foster parent. That sounded so different from what you were aiming when you were a big shot in Arizona coming up with policy.

I get the sense from other people’s stories that sometimes people can be at odds with the system, or the system can be at odds with providers.

Frank Rider: It’s funny that you mentioned that, Helen, because I did feel a lot of tension in my different identities at the time that I was raising Andy as my foster son over a 13-year period.

As Andy’s dad, I wanted to make sure that he enjoyed a high quality of life, had friends, and felt like he was a very capable person and able to accomplish important things.

Helen Osborne: Andy had a lot of special needs, correct?

Frank Rider: Yes, Andy did have a lot of special needs. Andy had severe mental retardation. He had a seizure disorder. He had what today we call ADHD, but in those days it was called Organic Brain Syndrome or Minimal Brain Dysfunction. That was around 1980 or so when we used that language.

Because of circumstances that happened in his early life, he also had what today we would call Reactive Attachment Disorder.

He had quite a combination of challenges. What really was the precipitant for most of that was meningitis that he experienced as a 2-year old.

Helen Osborne: Oh my goodness. You were his foster dad and you were pretty young when Andy came into your life, right?

Frank Rider: When I met Andy, I was 22 years old.

Helen Osborne: Oh my goodness.

Frank Rider: I had moved to Arizona, sight unseen, from Boston, where I grew up and went to school. When I got to Arizona, it was a very different kind of a place than Boston.

One of the things that I came to appreciate as most different is some of the native culture and American Indian culture. There are over 20 federally recognized Indian tribes in Arizona. Andy is a member of the Navajo Nation.

Helen Osborne: You were a young guy, 22, a dad to a foster son with a lot of special needs. You weren’t a policymaker then. You’re weren’t a provider. You were doing other things in your life as I recall in your story.

Frank Rider: I was actually working as a volunteer on John Anderson’s presidential campaign.

Helen Osborne: You were into social justice and activism perhaps.

Frank Rider: Yes.

Helen Osborne: Not in the healthcare world, necessarily.

Frank Rider: No.

Helen Osborne: I know Andy lived with you for many years and it was a very loving relationship as you worked out things over the years. How did that intertwine with your story and your experiences of eventually reaching high levels in doing policy work and advocacy?

Frank Rider: I met Andy when he was living in a group home. He had just turned 5 years old and my fiancée at that time had been hired to be a behavioral aide to him, a one-to-one aide.

My fiancée spent a great many hours a week with Andy, usually away from the group home. That was a relief to the staff and the other children living in the home, but also it provided some opportunity for me to start getting to know him as an individual.

At the same time, I became involved with the same organization that was offering these group-home services, and within about three years of having first met Andy, I found myself as suddenly the Director of Residential Services for that organization.

Helen Osborne: You are now the provider. You were his dad for all those years, but now you’re the provider and then you went on to doing policy work, at least on a local and state level. Is that correct?

Frank Rider: Yes. I had the dissonance of coming home every day to raising Andy in a typical American family with a mom, a dad and we’ll say a step brother or foster brother, and then going to work the next day trying to run the best group homes possible. Although, I had long since decided that children were designed to grow up in families and never in a group-home setting, so I had a lot of dissonance.

Helen Osborne: I get goosebumps every time you tell me that, that children are meant to grow up in families. I’ve just been so captured by this story and its very real implications.

The reason I wanted to share this with Health Literacy Out Loud is I think many listeners are wearing one, two or three of these hats. We are caring family members or we’re caring for our friends and family. Many listeners probably are somehow in the health field helping others and some people are making policies.

I think that your message is an important one to share, not just your journey from one level to the other, but what we can do about it. You are an activist and you’ve always been an activist. How can each of us alone and together in these different roles make a difference?

Should we start on the personal level? How can we as caring, loving people make a difference in this system that we’re living in today?

Frank Rider: I guess in my own journey the personal certainly came first. I got to know Andy, of course, as a little boy who certainly had some challenges, but was far more like other little boys than unlike.

I came to learn about his family history. At the young age of 22, I was pretty judgmental in a negative way about things I had learned about parenting practices that were very foreign to me.

However, over time I came to understand that it was because of a lack of support that Andy’s family felt a need to do some unconventional things, like feeding a 3-year-old boy coffee. That would be pretty unusual, but it was actually, in a sense, an approximation of giving him Ritalin to address his hyperactivity.

Helen Osborne: Oh my goodness. In the beginning, you were this young whippersnapper, new foster dad, in a new location and new culture. What would you recommend to people taking on new roles in their lives and new challenges like this? What can we do to make communication better and to achieve that triple aim of a better experience, better outcomes and at lower costs? What can we do?

Frank Rider: I think it’s very important for us to first see the person of focus, whether you call that the patient, the foster son or the client You need to see them as a complete person rather than simply to see a slice of them that happens to match the expertise of the provider.

For example, Andy was not simply a set of mental health or developmental diagnoses. He was a person, a boy that had been born of a family and had close ties to, of course, his parents and his siblings. The service system had not really been designed to respect the whole of Andy, but instead to just address slices of him.

Helen Osborne: It’s to really just put that whole person into context into his or her life and not just impose our own values, expectations and judgments on that person.

Frank Rider: That’s exactly right.

Helen Osborne: What about from some of your other perspectives? What tips do you want to share with us?

Frank Rider: As a healthcare provider, I think when we apply that perspective about the whole person, then we may stop seeing ourselves sort of one dimensionally as the expert who has unique access to a body of expertise about how to help this person be better.

Instead, we can try to ask them what their goals are, what their preferences are, what their priorities are and then to form an alliance with that person, sort of as a cheerleader and a supporter, as well as somebody who might have something of value to share with them.

Helen Osborne: That’s interesting, so you really want to start not just by saying, “We can do this for you,” “We have this medicine,” or, “We have this group program,” but you want to perhaps start that relationship by asking, “What do you want?”

Frank Rider: That’s exactly right. As a provider, I know that sometimes people will turn to other places to try to find help. They might seek out a trusted friend or a family member. They might purchase a book or listen to a tape. They might go to church or to a mutual group, even online.

I think that when most of us have a problem or a challenge, we are going to seek out support from a range of sources, not only from formal care providers.

Helen Osborne: We have to honor those too, don’t we?

Frank Rider: I think we do.

Helen Osborne: We have to know about them and honor them. Good advice.

Put on your mega hat of creating policy on a big level. How did all of your experiences influence that and what can we take away from it?

Frank Rider: I think I came to appreciate that although I loved the experience of raising Andy and wouldn’t trade that for anything in the world, it never should have happened.

The system should have been designed to provide support to Andy’s own family so that he would not have had to face this ultimatum as a 4-year-old of leaving his family home to live in a group home.

Helen Osborne: Knowing that and appreciating the people behind this, have you made policies or influenced practice?

Frank Rider: I’ve been blessed to have positions that have allowed me to do that, to see that the very kinds of support that were available through the group home could also be provided, and, by the way, at far less cost.

Helen Osborne: I was wondering about cost.

Frank Rider: If they were individualized and customized to fit Andy’s own family so that his mom, dad and siblings could have provided the bulk of the care that Andy needed, with a little bit of extra help in terms of maybe respite care, some special education and perhaps even some visiting-nurse services, as well as maybe some medication for his seizure problem.

Helen Osborne: That’s really interesting that you worked on this financial part too and the fact that you really see a bottom-line benefit to doing the right thing.

Frank Rider: Absolutely. Thirty-five years later, after having met Andy, today I’m recognized as an expert in human services financing. A lot of that journey has been based on my seminal experience with Andy and his own family and other children who were living in these group homes.

It was also figuring out that not only is that not the solution that the families would have preferred, but that was also substituting what the families could have and wanted to bring to the care equation in simply providing everything at the public’s expense, rather than only those supports that would have been able to leverage the family’s own gifts and assets.

Helen Osborne: Frank, listening to this story, I know why I love sitting next to you at PCORI meetings. It’s just really an inspiration how you’ve taken something so meaningful and personal and are making a huge difference.

What would your wish be for the listeners of Health Literacy Out Loud? We come from all walks of life and have all levels of responsibility.

Frank Rider: I think that my single wish would be that, within the scope of influence of any person, as a patient, a provider or even a policymaker, we would be committed to that principle of recognizing the strengths within each person and each family and dictate to individualize support and care around and in respect for the strengths that each patient, person and family already bring to the equation.

It is respectful, it is the best way to motivate and engage the patient and the family and it is cost effective at the same time. In my opinion, that’s a great starting place to actualize that triple aim that we talked about a few minutes ago.

Helen Osborne: Frank, you word it so well. You’re an inspiration and you are a motivator, too, for all of us to get engaged. Thank you so much for all you do and I’m sure will continue doing, and, even more, for sharing it with listeners of Health Literacy Out Loud.

Frank Rider: Thank you, Helen. It’s my pleasure, and I look forward to continuing to work with you, too.

Helen Osborne: As we just heard from Frank Rider, it’s important to consider all the ways we communicate about health, but doing so is not always easy.

For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, Stitcher Radio and the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.org.

Did you like this podcast? Even more, did you learn something new? I sure hope so. If you did, tell your colleagues and tell your friends. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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"As an instructional designer in the Biotech industry, I find Health Literacy Out Loud podcasts extremely valuable! With such a conversational flow, I feel involved in the conversation of each episode. My favorites are about education, education technology, and instruction design as they connect to health literacy. The other episodes, however, do not disappoint. Each presents engaging and new material, diverse perspectives, and relatable stories to the life and work of health professionals.“

James Aird, M.Ed.
Instructional Designer