WHEN MY SON WAS IN CRISIS:

WHY MY MEDICAL, GOVERNMENT, AND INSURANCE BACKGROUND DIDN'T HELP

BY HOANGMAI PHAM, MD, MPH

Our family crashed with my son Alexander's first crisis in high school. We saw our brilliant, gentle, confident son devolve in stress and anxiety triggered by writing assignments at school, leading to self-harming behaviors and crying fits. The passionate learner in him collided with the reality that his brain could simply not do what teachers were asking, and school staff were poorly trained to address his needs.

I went into supermom mode, networking to find help – for him, for us, for his teachers and counselors. After a few months, we finally had the kernel of a team – our autism "coach," a former educator getting her cognitive behavior therapy credentials who was deeply familiar with adolescent boys on the spectrum; an evidence-based psychiatrist steeped in research on treatment of anxiety in autism (our previous psychiatrist lost my son's trust when she prescribed too high a dose for the wrong reason); and a CBT therapist who didn't have autism expertise but built strong rapport with Alexander. I coordinated multi-lateral conversations between these clinicians and school staff so that we could all understand better the underlying cognitive and emotional issues in play and align the supports Alexander needed.

FIGURING OUT HOW WE (ALL) GOT HERE

When I was finally able to catch breath later that year, I reflected on how we had gotten to this point and saw the long trail of failures in the system. Our pediatrician never offered us specialized referrals or advice, even after we told him about concerns raised by Alexander's teachers. Alexander was diagnosed late by school psychologists, at age eight, after multiple rounds of assessment. No

one pointed us toward peer support or counseled us on what to expect as he grew older.

For my part, despite being a physician, I had received no training in intellectual and developmental disabilities and didn't know what I didn't know. Because Alexander seemed happy and thriving, we took things one year at a time, missing opportunities for earlier therapeutic support. In reality, we lived in downtown Washington, DC, and learned that most autism specialists were in the suburbs anyway, which severely limited our options because traffic and time pressures triggered anxiety for Alexander.

The arc of our story is hardly unique. I knew that families with fewer resources than ours would have even worse challenges. What made our circumstances different is that I'm a health policy expert who, over the last decade, was responsible for multi-billion-dollar initiatives to transform healthcare, improve health outcomes, and create more value in the system. I am a trained primary care clinician and researcher. I was Chief Innovation Officer at the federal agency responsible for Medicare and Medicaid, and an executive at the country's second largest private insurance company. But even with all that background, the phenomenon of I/DD was in my house, and still I had been largely unaware of how families with I/DD live until we experienced it personally – the burden of managing a fragmented network of providers, the challenge of even finding qualified ones, the sense of "forever seeking" the solutions to our problems.

LACK OF EDUCATION, INFORMATION, EXPERIENCE LEADS TO CLINICAL BIAS

My bias was that the I/DD population was small, in a clinical niche, largely confined to specialized centers for the Medicaid population, and therefore was not an obvious policy priority. I now know how wrong I was. In fact, people with I/DD account for at least 3-5% of the U.S. population – far too many people in too many places to ever be adequately served by a handful of university-based centers of excellence. We also know that people with I/DD