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?