Guest post: adventures in regulatory policy

Photo credit, The Pregnancy & Postpartum Resource Center

Too often, we equate “advocacy” with “lobbying” and, so, overlook all of the changes that we can achieve through other means, by focusing on other types of decision makers.

I’ve learned through teaching and my own advocacy that stories are particularly potent tools for inspiring us to act, so today’s post tells the story of some advocates for women’s health care who took an unexpected route to their desired social change. Along the way, they learned how to navigate a specific regulatory environment, added new skills to their advocacy repertoire, and, perhaps most importantly, moved closer to a significant advance in women’s health care.

To craft this post, I interviewed Jen Stoll, one of my rock-star former students who has been featured here before. I’m not quick enough to get everything she said word for word, so these are paraphrases, not direct quotations, but she has verified that they are accurate reflections of our conversation and of her experience.

I want to hear from others (and Jen does, too!) who have used regulations to change social systems and improve people’s lives, too. How do your skills transfer between legislative and regulatory advocacy? What learning do you want to share?

ML: How did you define the problem you wanted to tackle?
JS: As a doula, I experienced first-hand the frustrations of not being able to work with clients who were Medicaid recipients unless I volunteered–Medicaid would not reimburse for doula services, even though there is compelling evidence that doula-assisted births are less expensive and less potentially traumatic for women. Women I met who were Medicaid recipients were upset because they often didn’t understand their options and disappointed because they didn’t have the births they expected. I started to talk with other doulas in my network about this, connecting this policy to poorer birth outcomes for some low-income women. One doula told me that Minnesota had passed legislation that directed Medicaid to reimburse for doula services, so it started to seem like a wider policy change would be possible.

ML: So, if Minnesota had achieved this change legislatively, what made you start with regulatory advocacy?
JS: We actually didn’t start out with that intent. We knew that we needed to know more about how Centers for Medicaid and Medicare Services (CMS) viewed doulas, and what they knew about the impact of Medicaid policy on women who give birth. I serve on a committee through Doulas of North America focused on this issue, and we divided up a list of dozens of contacts, at various levels in the Medicaid system, to start conversations with regulators. A friend who works with Medicare also gave me some contacts to guide this work. We started to make cold calls, telling a story of a client who gave birth attended by a doula. The story wove together the narrative of better outcomes with some persuasive data on cost savings. We were all calling independently, but we shared the same objectives: to educate and to listen.

ML: So how did an informational campaign result in actual regulatory change?
JS: Every person with whom we spoke was responsive. It was really quite amazing; we also have some campaigns underway with private insurance companies, but we’re not making nearly as much headway with them. With CMS, every message we left was returned, and everyone listened and asked questions. Still, we never found someone who could, or would, answer our question about what the process would be to achieve this change. No one ever said, “oh, that’s my job.” So we just kept calling.

ML: And then?
JS: And then, one day, the committee received a letter from CMS stating that doulas had been issued a provider number (we didn’t know that that was what we should have been asking for). We still don’t know whose advocacy really made that happen. It seems like we kind of created a drumbeat for change, and that our persistence paid off, in finally conveying the necessary information to someone(s) with the authority to take action.

ML: So what now?
JS: Now we’re initiating the next step. States have to take action to require their Medicaid programs to reimburse doulas, and each state has a different process for that decision. In Kansas, it wouldn’t take legislative change, but we’re starting with some states with greater doula representation where, like Minnesota, the legislature will need to act. Simultaneously, we’re educating doula providers on why they should apply for Medicaid provider status, and how to proceed with that application.

ML: What lessons did you learn from this regulatory advocacy that you want to share?
JS: First, you really don’t need to know that much. We made the progress we did by asking lots of questions. Regulators are experts in their field, and, for the most part, they want to share what they know. Second, stick with it. Many of these regulatory agencies are complex by design, and they certainly don’t make it easy to navigate through for the information you need. We figured that, since we were taking shots in the dark, we should shoot wide and long! Third, change can happen in unexpected ways and, while you can’t always be prepared for this, you do need to be able to pivot to the next step quickly. And, finally, ask for more than you might expect to get. Regulators care about the programs they administer, and we had very different conversations about the health care of low-income women than we could expect to have in more politicized contexts. That can create openings for change beyond your expectations.

*************
I know that Jen would be happy to answer your questions about this process, or her ongoing work. And, regulators, if there are any reading, you can be anonymous–how do you like to be approached by advocates, and what is most persuasive to you, in terms of tactics?

16 responses to “Guest post: adventures in regulatory policy

  1. I really appreciate lessons that Jen shared about being an advocate. I think one of the most daunting task for me is feeling that I know everything about on how to make a change or about policies. While I know a lot knowledge concerning the matters I have passion for, I feel like I don’t know enough about other areas of our society that effect my passions. Therefore, I lose confidence in my advocacy ability.

    I also like your comment about how change can happen with no notice and you cant prepare for it. I know with the elections coming up, many social programs are trying to prepare for what changes may occur with a change in state leadership. As advocates, we often may feel defeated with the implementation of new leadership or policies, but you never know how your and your agencies efforts could impact our social environment.

    • That’s a very common concern, Jody, and one of the things that I really admire about Jen is her willingness to jump in, in recognition that no advocate can ever know everything, but that imperfect knowledge isn’t reason not to act. I’m going to make sure that she sees this comment thread, so that she can answer some of your other questions!

  2. O and also, Jen what other advocacy activities have/are you working with? Are you approaching these issues through different means than the doula advocacy effort, and if so how did you decide on your approach?

  3. Hi, Jody. I think the concern about changing leadership is totally valid. I could spend my life consumed with national (and thanks to Melinda, state & local) politics. I have begun to realize, though, that legislature, legislation–and even judicial rulings–are an ever-changing landscape. One of the things I love about regulatory advocacy is that outcomes aren’t dependent upon political leadership, for the most part.
    As for your concern about not knowing enough/knowing too much & to address your second question…One of the greatest things about being a social worker is that we are at our best when we let go of “the right” answer, all of our knowledge, and let our clients do the walking & talking. They are better at it than we are–always. We are beginning work on an advocacy project in Lawrence. We noticed that a disproportionate number of moms in our support group there were Graduate Assistants at KU. Last spring, I began informally asking these women about family leave policies, what their contracts required in terms of requiring certain hours, and how they felt these policies impacted their postpartum experience. This fall, we met again and they are taking on the task of putting together a proposal, getting feedback from their peers, and proposing the changes to the administration. Honestly, here, I observed a cluster group, asked questions, made the suggestion that some work could be done on this issue, and stepped back. Clearly, these are highly motivated clients. Or maybe they realize how important this issue is to their lives.
    My passion is their mental health and their attachment to their little ones. But lots of things influence that–and they know those factors better than anyone. Maybe when we “hit” on the right issue, that’s when the motivation comes in…
    LOL. I realize I am being all preachy about not being preachy. But, truly, being a bit of a fly-on-the-wall in their discussions is what has driven every decision in this advocacy project, so far. So, no “decisions” really…just rolling with it.

    I’m realizing I’m not sure what this type of advocacy is…Regulatory? Yes, sort of…Melinda? What about if we were to replicate it with companies?

    And, I have to say, I think we are on the brink of a civil rights case, as well. Don’t want to say much, but pray, keep your fingers crossed, and hope…(is that wrong of me?)

    • Jen, every story you tell me about your advocacy makes me more and more impressed–with your sensitivity, your strategy, and your commitment to your cause. This is awesome!

  4. This blog post was very inspiring for me. The more and more I find out about different ways to change policy, the more passionate I get. Since last class, I have been getting on HRC, and writing to different key people that they suggest. Until last lecture I never knew what a difference I could make. This post really lets you know that you can make a difference, that CHANGE is possible. There is so improvement that can be made to so many different policies. It can be overwhelming if you think of it all, but with this you realize how important little steps to change are. It was interesting to read the steps it took to achieve change. I like that Jody is able to break it down and really explain it. Policy can seem so scary, and to know that you can ask questions, and that determination is key really helps me see how possible it really is.

  5. I’m going to print this out and laminate it and carry it with me in my pocket! Y’all make me laugh! I say, “I asked some questions and then I didn’t do much” and you guys are like, “So inspiring…” Thank you for the vote of confidence! My job has felt really lonely this past few months and this gives me new energy! Thanks! And, really, Melinda…what’s it called when we advocate for private companies to change policies & procedures? I know you taught this, but I am drawing a blank…

  6. This is great work. It is amazing what face to face or phone contact can accomplish. This gives me hope regarding some regulatory changes I would really like to see social workers partake in as it relates to hospice regulations that diminish the role of social workers, putting them under the nurse, and even defining a social worker as a number of other professions in the CMS Rule for Hospice Conditions of Participation June, 2008.

  7. This is a great story! I completely agree that stories help people understand why changes need to be made. Everyone does not have the same experiences in life, so to hear a story about another who had an unjust experiences or an experience that could help others helps to gain momentum in making changes. I look forward to making these types of changes one day! At the food pantry I work at, and on the board of, we use stories to help spread the word of how the pantry is helping our guests. It is a powerful message that has a good response. Over the years the stories have helped to increase the donations to the pantry. -Which is great since the need at the pantry has increased 4x the past couple of years. I don’t believe I have had any experience in making regulatory changes besides attending a march in Topeka once or signing a petition. Locally, I was able to be a petitioner and to have a petition signed by people living within the neighborhood to keep a developer from building unwanted (for many reasons) duplexes. It was a great experience to go to city hall with my signers of the petition. The mayor told the developer that he needed to talk to the neighborhood to work something out. We all felt successful. It is not at the same level of policy and regulations, but, it was a great stepping stone!

  8. I think Jen’s story really illustrates an even greater point that I try to tell clients, friends and fellow social workers alike; if you’re looking for some information or help – just ask. The absolute worst thing someone can say is, “No”. Even worse, they wouldn’t even get the opportunity to try and help you if you never ask the question. It’s so easy to get confused with the massive bureaucracies that a person can become discouraged even before they start their mission. I’ve found on countless occasions how much easier something becomes when you simply get over the initial anxiety and ask a couple of questions.

    Back when I worked for Sprint, I managed to save the company 10’s of thousands of dollars in form rejections and lost productivity (and countless headaches) from a company that we needed to send requests for phone line transfers to. We were new to the market and didn’t really know the specifics of the requests. One day, I just decided to get on the phone and simply started out with “I’m not really sure what exactly to ask, but I’m trying to figure out what we’re doing wrong”. With a quick phone call I was able to create a working relationship that fostered some significant decreases in difficulties.

    I pass this onto clients when I’m trying to teach them about self-advocacy. It’s great hearing a client say “I didn’t know I could do that” when they learn that they do have the power to self-advocate and ask someone for something important to them.

    • That story about your success at Sprint is a great one, and I’m so glad that you have found ways to use it in your social work advocacy! Yes, I pull out the “I’m not even sure if you’re the right person, but I’m just trying to figure this out” card All The Time. As you said, at worst it’s a ‘no’ and maybe some eye rolling on their part, and sometimes we can break through the obstacles and get what we need for our folks!

  9. Really, when you take a step back and look at this entire blog, it seems evident that all advocacy examples required one pivotal and important thing, action. I know I can personally feel overwhelmed and intimidated by the word, simply because of its implications. However, what this discussion can help me take personal comfort in, is that often times, it was simple acts that started huge change and client advocacy. It’s a great way to illustrate how the sometimes even the most seemingly “small” efforts can cause positive things in a variety of avenues.
    A personal example would be in relation to an experience during my undergraduate endeavors. Throughout a variety of deviant behavior and criminology classes, the discussion of rehabilitation and reintigration quickly became a focal point of forward progress in addressing recidivism. Due to the specific interests of classmates and an overwhelming desire to start addressing these issues, a group of students and one professors began brainstorming applicable ways for us to address such issues on a local level. At the time, our professor took great initiative and found a program modeled in others states. Essentially, the program was an actual Criminology and Rehabilitation course, offered by other Universities to both students and incarcerated individuals together, simultaneously. As a group, this seemed like an amazing program and we quickly started working to see if we can have something similar at our school.
    We started buy actively made phone calls to other colleges who actively participated and gathering details, researched and wrote letters to the dean, university president and board of directors. We also had to find a partnering jail institution who would agree to participate and facilitate operations. After a semesters work, we were able to get the Topeka’s Correctional Facility and Baker University to agree to a partnership which allowed 15 Baker students and 15 incarcerated women to participate in this course together once a week for three hours at the prison. Both went through an equally extensive application process, and both were held to the same standards of classroom performance. Students were legally admitted to the facility under a “volunteer” status. The women in attendance had to make extensive efforts to become one of the 15 members; yet even so, incarcerated women who applied were in the hundreds.
    It was amazing, here was a situation where although by societal measures we were not equal, we had found a way to help create equality and facilitate learning. As a group we sat in a circle, side-by-side and discussed as a class social injustices and the over-al affects crime has had on those women’s lives. At the end of the program, we invited the president of the school along with the prison warden to attend our final class. It was here that we presented our collaborative re-integration program to the warden, in hopes of creating change. This program is still going on today, and the incarcerated women who participate in the class receive donated college credit from Baker University. Although there is clearly more that could and should be done, (ideas for future advocacy!) I think this is a great personal example of advocacy for a group with far less power in our modern society.

    • What an awesome story, Ariel! I really appreciate your recognition that we can so easily paralyze ourselves as we face the enormity of the challenges that surround us, when what is really required is the ability to move past that sense of being overwhelmed to do SOMETHING. But the particular approach that your class took is really exciting, especially given what you reflect on, in terms of the power dynamic and how that was leveled, and how your engagement with those incarcerated served as inspiration and a model to others. Do you know how subsequent classes’ experiences have gone? What advocacy do you think is needed, today, to continue the advances realized by this initiative?

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