Just One Extremely Determined Person Can Change the World

Milbank State Leadership Network
Focus Area:
State Health Policy Leadership

Several years ago, I was invited to participate in a panel on Medicaid-funded home- and community-based services (HCBS) at the annual meeting of the National Medicaid Directors Association. Speeding through an email message about a prep session for the panel, I saw that it would be moderated by then Centers for Medicaid and CHIP Services official Barbara Edwards — a nationally recognized expert in HCBS — and that the speakers would include one of my fellow Medicaid directors, Stephen Groff, and someone named Julianne, whom I couldn’t place immediately.  

Julianne Beckett

Barbara Edwards, Julianne Beckett, Stephen Groff,
and Kate McEvoy

Onto the prep call then came a soft-spoken, self-effacing person named Julie, who began to talk about how we couldn’t forget to focus on the people who actually receive these services. Nodding in agreement, I hastily scrolled back through email to try to identify who she was. How surprised and chagrined I was to realize that this modest Julie was, in fact Julianne Beckett — disability advocate, mom and ally to daughter Katie Beckett, co-founder of the national organization Family Voices, and a force behind the passage of the federal Family Opportunities Act. Julie “waiver mom” Beckett!

Do you know about Julie? Her life in Cedar Rapids, Iowa, took a fairly conventional path through work as a junior high school teacher and her pregnancy with daughter Katie. Challengingly, however, Katie contracted viral encephalitis at four months of age. Although she recovered, Katie experienced partial paralysis and required ongoing support from a ventilator to breathe. While her parents had private health insurance, the family exhausted its $1 million cap in only three years.  

This was, and unfortunately remains, a dauntingly familiar story to parents who provide care for kids with special health care needs. Many have employer-based insurance and have never expected to need help from the Medicaid program. While the Affordable Care Act has prohibited all insurers from imposing annual or lifetime caps on “essential services,” the service most needed by these families – private duty nursing – is not similarly protected. As a result, one parent — most often the mom – very often has no choice but to leave the workforce to provide care at home. 

As Julie put it, “We’re not poor enough to be eligible [for Medicaid, other than in a hospital setting], but we’re not rich enough to handle it.” Complicating this constraint was the fact that at the time the Becketts needed it, Medicaid would pay for Katie’s services in a costly hospital setting not at home. 

Did this stop Julie? Hardly. Through feats of self-advocacy and grassroots diplomacy, Julie Beckett launched a campaign of lived experience that started with her congressperson, Thomas Tauke. Representative Tauke carried Julie’s message forward to then Vice President George H.W. Bush, who was so inspired by family’s story that he shared it with then President Ronald Reagan.  

This amazing set of events could well have ended there, but it did not. In November 1981, President Reagan held a press conference during which he decried how arbitrary federal rules were getting in the way of a common-sense solution for Katie and her family. Two days later, his Secretary of Health & Human Services Secretary, Richard Schweiker, announced authorization for a waiver under which Medicaid could serve children with special health care needs in home settings.  

This “Katie Beckett” waiver was a progenitor for later enabling legislation in 1981, which authorized use of Medicaid funds to pay for home- and community-based services under section 1915(c) of the Social Security Act. In 1982, the Tax Equity and Fiscal Responsibility Act (TEFRA) opened up the alternative of covering these services under Medicaid state plans, which is a more flexible option that does not require the procedural obligations of a waiver. Today, almost 2 million children and adults with disabilities receive HCBS under those and related authorities. 

Julie built on that experience to advocate throughout her lifetime for other important advancements in flexibility and scope of Medicaid HCBS nationally. She also consistently promoted Katie’s capacity to share her own story, which involved living three times longer than physicians had predicted would be possible, graduating from college, working, and rumors of a romance novel in the works. An autonomous, self-directed person who had hopes and aspirations of her own and lived to age 34. 

So, let me tell you a little more about my experience with the panel. There we all were — Barbara, Stephen, and me — prepared with lots of technical expertise and advice for states. And yet, the heart and core of the entire session was Julie. Who told her story simply but with conviction born of understanding that at the root of all that we do in human services are the deeply personal, intimate needs of individuals and families.  

I wish that I could say that I was able to be professional as Julie spoke, but honestly, I cried the entire time. I’m not talking about a few tears. It was more like I bawled. I was so moved by her remarks that I just couldn’t get a hold of myself. But then when I did have to speak, she silently took my hand in solidarity, and I was able to take a deep breath and move forward. 

How often do state officials fall prey to believing that the seat of expertise lies in executive branches or legislatures as opposed to deep within the homes and experience of people who receive public services?  As much as I thought I knew better, I too made this mistake over and over again. It required frequent reinforcement from Medicaid members, disability self-advocates — and an amazing colleague-grown-to-be-friend who provides peer support to others with behavioral health conditions — to internalize that the credentials that we tend to favor (degrees, tenure, national recognition) often leave me and those who continue to serve as state officials seriously deprived of the truths that come from lived experience. Deprived, and making decisions about what policies to implement and how to spend public funds that may be seriously off the mark. 

As we start, cautiously and with no great sense of confidence, to emerge from the pandemic, let us not unlearn our bracing, newfound recognition that experiences of people vary dramatically, especially those for whom race, ethnicity, age, sexual orientation, or gender identity has posed unique barriers.  And that the hands-down best place to start, in each of the stages of trying to help people with public services – from identifying what problem we want to solve through evaluating whether what we have put in place has succeeded – should be with the people who will receive the service. Because, you know what? They know best what they need.  

As the disability movement reminds us, “nothing about us, without us.”  

Julianne (Julie, “waiver mom,” hero to me and thousands of others) Beckett died on May 13, 2022, at age 72 at home in Cedar Rapids.  Rest in peace, mighty advocate! 

Advice for State Leaders 

  • You don’t know what you don’t know. Until and unless you have a frank discussion with people who receive the services that you oversee, authorize, or fund, you’re likely operating under old information, preconceptions, or worse.
  • You don’t have all the ideas. Imagine what living through an eligibility process, attempt to secure an appointment with a specialist, or experience with an office that can’t accommodate your hearing impairment can inspire in people about how to do things differently and better.  
  • Don’t make people come to you. States just love task forces. And advisory bodies. The problem is that for consumers, these tend to be incompatible with work obligations, require travel and out-of-pocket costs, and are intimidatingly full of people who regard themselves as experts. Why make people come to you? Go to them. If you don’t know where to start, ask the advocates who frequently criticize how you do things. 
  • Especially if you are a white person, your experiences are just that — your own. You can’t assume commonalities. I have found it to be interesting and illuminating to ask people to say something about their “origin story” — how they came to be who they are. It’s a respectful and low-key way to learn a lot and test assumptions around what you expect to be true. 
  • Fitting into government structure like public comment periods and legislative hearings is not innate. Imagine you are entirely new to both. What do you need to know to be successful? Twenty-five years ago, I testified for the first time at a hearing and learned the hard way that the many, many people in front of me had risen at dawn to add their names to a sheet that was being carried around by the committee clerk. We also have to ask ourselves what natural pathways people use to become aware of something happening civically. That doesn’t tend to be legal newspapers!