Turning Passion into Profession

 When I was a baby lawyer, I practiced at the U.S. Department of Justice in Washington, D.C.  Following a two-year clerkship with U.S. District Judge David C. Norton in Charleston, SC, I went into the Civil Division of the Department of Justice and practiced in the Office of Immigration Litigation. I did primarily appellate work, and I loved it. I loved virtually everything about my job—I was surrounded by smart people who had the time and the desire to help me develop as a lawyer; there was camaraderie in the office; I had an intelligent, fun, reasonable, and caring boss. It was a dream job for someone who wanted to practice law.

And then, after six years, I left. I had been teaching legal writing at George Washington University Law School on an adjunct basis. I taught every Wednesday afternoon, and I soon found that Wednesdays were my favorite day of the week. While I enjoyed my appellate practice—I loved the travel to various Circuit courts, I loved sparring with great minds on the bench—I relished teaching great young minds even more. After a few years of teaching on an adjunct basis, I decided to make the switch from practitioner to professor. A confluence of factors came together in my favor, and I was hired to the full-time faculty at GW, as director of legal research and writing.

Once again, I found that I loved my job. GW ran an adjunct-based legal writing department, so I spent a great deal of time getting to know sharp lawyers in town who wanted to try teaching. With an incoming 1L class as large as 550 students during my tenure, I hired as many as 50 adjunct professors annually, and I enjoyed the fellowship with the variety of lawyers who came into the program. I also loved teaching my small section of a dozen students, and I enjoyed my relationship with the GW faculty at large—an exceptionally collegiate group of professors with true open-door policies.

It was while I was teaching at GW that my first-born son, Ryan, was diagnosed with autism. Ryan was not quite two years old when we got the diagnosis that rocked our worlds. My husband, Dan, who had also been a lawyer at the USDOJ but was now in private practice, was devastated, as was I. We became consumed with trying to figure out how to help our son, while we tried to remain good employees and lawyers in our very full-time jobs.

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I could write pages—chapters—about those early months and our struggles to help Ryan. For present purposes, suffice it to say that the one certain thing that stood out for me was that all of Ryan’s doctors recommended a course of treatment called “Applied Behavior Analysis,” or ABA therapy, which is an intensive, one-on-one therapeutic intervention that can be highly effective for children with autism.

We researched ABA at length, not only to understand the evidence supporting it but to find qualified practitioners in the D.C. area. Fortunately, in D.C., multiple practitioners and practice groups were available from which to choose, and we interviewed many.  We selected one, scheduled the initial weekend workshop to get the therapy program started, and were shocked to learn that the initial workshop would cost $3,000. I remember thinking, “Wow, this is going to be expensive. Thank goodness we have health insurance.”

I was stunned to learn that our top-of-the-line health insurance would not pay one penny of the cost. Health insurance refused to recognize the therapy that the medical professionals at Johns Hopkins, Georgetown, and Children’s National Medical Center had recommended for my son.

As bothered as I was by the inequity of the insurance situation, my immediate thoughts turned to “How are we going to pay for this therapy for Ryan?” My legal inner ear was telling me to sue the insurance company, but my practical side was telling me I could not handle another time-consuming burden at that moment. My maternal instincts were telling me to spend all my extra time and energy on Ryan’s treatment, and keep performing in my job so I could make enough money to pay for it.

So that’s what I did. I worked a demanding job at GW Law School every day and played an exhausting role as Ryan’s mom, with every move shaped by ABA therapy, every evening until I collapsed into bed. Ryan, by the way, never collapsed into bed. Like many children with autism, he had (and still has) very little need for sleep and routinely stayed up screaming until 4 a.m. Dan used to put him the car seat and drive him down I-66 for hours so I could get some sleep.

This exhausting routine went on for a couple of years, during which time Dan and I decided we needed to be nearer to family for support. I learned that a new law school was opening in my home state of South Carolina, and I applied before the school even existed. I got that professorship, and we moved our soon-to-expand family to South Carolina.

Once I had another baby and got settled into teaching at the Charleston School of Law, I again pondered the inequity of health insurance not covering the standard-of-care treatment for autism that was recommended for my son. I was plagued by the plight of families, less fortunate than mine, who could not possibly afford to pay out-of-pocket for an intensive therapy program. Ryan’s ABA therapy, which he was recommended to engage in for 40 hours per week, was costing us approximately $70,000 per year. I went to autism support group meetings with families who didn’t make $70,000 per year! How were they supposed to give their children with autism the treatment the doctors had ordered? I learned that the average household income in South Carolina was in the $40,000s. “What happens to children with autism in those families,” I wondered? It was a constant knife in my stomach to think about the parents who knew an effective autism intervention existed, but could not give it to their children because of cost. I was plagued by the families who were providing the therapy to their children but were depleting retirement accounts or going bankrupt, literally, in the process. And I was bothered by the fact that these very parents were paying premiums every month to insure against unforeseen, catastrophically expensive medical needs, like autism.

The system was broken, and during the summer of 2005, I began writing a law review article on funding for autism treatment. I knew from personal experience that the system had failed, and I wanted to explore how to fix it. I started working on a classic law review article—describing the problem, providing the background, and proposing a solution—but midway through the article, I lost steam. Through my research and study, I had determined that, while various systems—education, Medicaid—played some role in autism intervention, one system—health insurance—was completely, stubbornly, and inappropriately out of the picture. Simply writing about this problem no longer seemed enough (much to the dismay of my law school dean), so I trashed the law review article and instead wrote a piece of legislation to fix it, at least in my own little state. I closed the “Autism Law Review Article” document and opened a new one called “Autism Insurance Bill.”

By the end of 2005, I had written legislation to require health insurers in South Carolina to cover screening, diagnosis, and treatment for autism, as prescribed by a treating physician. I had secured a state senator and house member to sponsor it, and I had written to autism families all over the state asking for their help in a grassroots movement. Numerous families signed up. By January 2006, we had a hearing before the Senate Banking and Insurance Committee on the bill.

I had never even been to a legislative committee hearing, much less orchestrated one, but my legal training gave me enough to go on. I kicked off the hearing with about 15 minutes of testimony about autism generally, the treatment, the insurance problem, and the proposed solution. A line-up of star witnesses followed, and several hundred autism families were there to show support throughout the two-hour hearing. It was the start of a very long journey about which I could, again, write chapters. Suffice it to say that the bill, now known as “Ryan’s Law,” passed in May 2007, and, following a unanimous override of a gubernatorial veto on the night before the last day of the legislative session, became law on June 7, 2007.

At the time, I did not fully appreciate what we had done. Most laws don’t pass without lobbyists, money, or professional campaigns behind them. There wasn’t even an official organization behind Ryan’s Law—just a bunch of autism parents from around the state who believed in the “Schoolhouse Rock” version of government. I believed in it, too.

I had been on leave from the Charleston School of Law during the bulk of the activity on Ryan’s Law, and I never returned. I practiced immigration law part-time at a firm in Charleston, and then saw an opening for assistant director at the USDOJ’s Office of Legal Education at the National Advocacy Center, which happened to be not only in my home state, but 15 minutes from my hometown and my aging mother. I applied and rounded out 2007 with not only a new law but a new job, a new city, a new house, and a new baby. (I signed the house contract while recovering from a c-section in my hospital bed—sound familiar, working moms?)

The job at the Office of Legal Education combined my practice experience at the DOJ with my love of teaching; it was perfect for me. I orchestrated courses in Civil Trial Advocacy, Legal Writing, Appellate Advocacy, and I got to work with awesome new and experienced federal attorneys from all over the country, who flew into South Carolina to train or to be trained. Once again, the atmosphere at work was collegial, my colleagues were brilliant and fun, and life was good. I continued my autism advocacy work after hours, helping families around the country with various insurance-related issues.

Only six months into my tenure at the National Advocacy Center, a relatively new national nonprofit called Autism Speaks contacted me. Autism Speaks was founded in 2005 by Bob Wright, former president of NBC Universal, and his wife Suzanne after their grandson was diagnosed with autism. Autism Speaks was already a successful organization pouring significant resources into autism scientific research, but the board wanted to pursue policy reform, too, and had recently assembled a government affairs team. The head of this team called to ask if I wanted to come on board full-time with Autism Speaks and attempt to replicate Ryan’s Law in all 50 states.

It took me three months to decide whether to take the job. I had moved around so much already and had literally just relocated my family from Charleston to the Columbia area for the DOJ job. My husband had given up a good litigation job with Moore & Van Allen in Charleston to facilitate the move. Although he landed a new position as litigation director at South Carolina Legal Services, I felt that I was asking too much of my family and would look too flaky in my career if I left the awesome DOJ job after less than a year and went to work for Autism Speaks. I also wasn’t sure whether our family of now five could adjust to two nonprofit salaries.

Ultimately, the need to help solve the autism puzzle weighed heavily on me, and I took the job. In the fall of 2008, I began working for Autism Speaks Government Affairs from my home in Lexington, South Carolina. I began, as the New York Times later put it, to “barnstorm the country” in an effort to get other states to mandate health insurance coverage for autism. I met autism families all over the country. I heard stories that motivated me to work harder and caused me to come home and cry at the end of the day. I met legislators who became true champions for our cause and cashed in personal chips to help get the bill passed in their states. I met other legislators whose ignorance scares me to this day (“Isn’t autism just hyped-up ADHD? And isn’t it caused by something the mothers did while they were pregnant, like drinking or smoking?”)

As of this writing, I have testified on this issue more than 100 times in state legislatures throughout the country. I have comfortably transformed from a federal appellate litigator—discussing the finest technical points of law with focused, well-prepared, brilliant jurists—to state legislative advocate—delivering broad, sometimes unreasonably time-limited testimony to committees of busy, sometimes-part-time generalists composed of lawyers and non-lawyers alike. And I love what I do. I realized that I have turned my passion into my profession. I obviously would do this work for free if I could, I spent two years doing it for no pay in South Carolina, but I am blessed that Autism Speaks has allowed me to pursue this meaningful work as my profession.

And unlike some of my prior work, where no happy client was around to celebrate with me at the end of a hard-fought victory, my work today is filled with elated families celebrating every win. Every floor vote and every signing ceremony is filled with tearful parents and grandparents whose lives are being forever changed with the stroke of a pen. To this day, I get thank-you notes from families I have never met, letting me know that their child started ABA therapy, or they received their first insurance reimbursement check, or their child said “I love you, Mom” for the first time.

To be sure, the job has its downsides. For starters, I travel way too much for a mom of a first-grader, a fifth-grader, and a 13-year-old with severe autism. Delta loves me. These days, I have a couple of colleagues who can help with the travel, and together we’ve spent years training parent-volunteers who handle a lot of the advocacy in their home states. But I’m still on the road more than in any of my previous jobs.

Also, I get frustrated by the politics. In my prior appellate work, I won some, and I lost some, but I always had the opportunity to make my case before a panel of attentive judges. In state legislative work, sometimes a committee chair simply refuses to conduct a hearing on the autism insurance bill, thwarting our ability to make the case. Usually, in my experience, these committee chairs are, shall we say, heavily under the influence of the insurance industry. To this day, I find it incredibly frustrating when a legislature refuses to allow the process to play out. Vote for it, vote against it, but let the citizens have their day “in court.”

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Do I miss being in the courtroom? Occasionally, I do. For a while, I considered getting back into a more traditional practice to help enforce some of the autism insurance laws that have passed in various states. As with any new statute, many issues have arisen in the implementation of the laws, and few lawyers were equipped with the desire, time, and background knowledge to help make these laws work for the benefit of autism families. Eventually, I persuaded my husband to take on that role, and he now also works for Autism Speaks, as Executive Director of the Autism Speaks Legal Resource Center. In that capacity, Dan serves as the de facto national litigation director and legal clearinghouse for autism-related litigation, particularly on insurance and Medicaid matters. He interfaces with a growing body of private practitioners who bring cases to help autism families access care.

Do I miss being in the classroom? About five years ago, I realized that I really did miss the teaching. And I realized that I could do something about the dearth of lawyers who understood the legal ramifications of an autism diagnosis, from the Individuals with Disabilities Education Act, to insurance, to special needs planning, to disability benefits, and more. I called my old friends at GW Law School and asked if I could teach a course on autism and the law. Five years later, I am still teaching the course, and I am so proud of the students, now lawyers, who immersed with me in an exploration of the legal issues that come with autism.

I have even had a chance to intertwine my new career with my old American Bar Association work. For six years, I served on the three-person committee that ran the ABA Law Student Division’s National Appellate Advocacy Competition. I chaired the competition during my first year with Autism Speaks and then finished my service—or so I thought. A short time later, the ABA allowed me to design and write the moot court problem for the competition, and, you guessed it, I had 600 law students research, write, and argue about autism issues that I saw on the horizon. On each team, one student argued whether an autism insurance mandate that capped coverage at age 12 violated the federal mental health parity law, and the other students argued whether states were required to cover Applied Behavior Analysis therapy through the Early Periodic Screening Diagnostic and Treatment provision in Medicaid. That national moot court competition ended in April 2012, and both of the cutting-edge issues about which students argued are now, in 2014, the subject of ongoing federal litigation.

Although I am no longer practicing law in a traditional sense, I keep a list of my victories, much as traditional lawyers would with cases on their resume. My list is a picture, though. In my office, I have a map of the United States, and I turn a state green on the map when it has passed a meaningful autism insurance law. Here is my map/resume. Children in 38 states now can access treatment for autism through their health insurance. That’s the best paycheck one could ever have.

autismmap

 

About the Author

UnumbLorri Unumb is the Vice President for State Government Affairs at Autism Speaks. She can be reached on Twitter at @lunumb.

 

 

 

(Image Credit: ShutterStock)

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