Developmental Disabilities: Close the Training Gap

Are we learning to help patients with developmental disabilities? I recently had the opportunity to participate in an APA workshop on advocacy on behalf of patients with developmental disabilities. In thinking about what I could offer such a discussion as a PGY-4 resident in general psychiatry, I considered my own experiences. I thought of one encounter when I wished that I could advocate effectively both for my patient and for better services in general. As I reflected, I realized that we should also be advocating for ourselves as residents to receive better training on how to help patients with developmental disabilities.

John (not his real name), a 30-year-old man with autism spectrum disorder and mild mental retardation, was brought to the emergency room by police after disrupting traffic outside a convenience store. John's parents were contacted, and they reported some increase in agitation and self-injurious behavior over the past week or two. I was paged to authorize John's fourth admission in the past six months. I wondered what I could do differently after two previous resident teams had failed, but I couldn't very well turn him away.

As I entered John's room, my spirits picked up. John was sitting on Power Rangers sheets and holding a well-worn Superman comic book. I started to like him as he talked excitedly about the bus outside his hospital room window being “right on time” that morning. We worked around to what had happened the day before, and he told me that the convenience store hadn't had his favorite candy bar, which was “not good.”

Once I met with John and then John's parents, I got a sense of how I might help. First, his parents needed a clearer sense of his diagnosis and symptoms, since they had been told that he was “psychotic and maybe schizophrenic.” I also noted that he needed a proper trial of an SSRI to help with his preoccupation with rituals and routines.

Moreover, John's parents were starting to have health problems, and they had been trying for more than a year to find a group-home placement for John. They had been offered an intermediate care facility, but were ambivalent because John would not be allowed to ride his bike.

A day later, I managed to reach John's caseworker. She too was frustrated at the lack of services for patients like John and detailed some frustrations with his family's unwillingness to take the intermediate-care placement. She promised to work with the family to find other options.

We discharged John after six days. I rotated off of the inpatient service but bumped into John's parents a month later during yet another admission. I was sad to hear that little had changed.

In talking with residents in other hospitals, my experiences with John and patients with developmental disabilities are quite typical. I'm luckier than most in that my residency program has a didactic series on mental retardation and other developmental disabilities, but we still have no explicit clinical experience with such patients, and we don't see them as outpatients.

Very little in the psychiatric literature discusses this gap in training. An article in the March Psychiatric Services described a survey study of a three-week experience of residents on a dual-diagnosis/mental retardation unit at Zucker Hillside Hospital in New York. According to the survey report, residents almost uniformly described this as an important experience, but even in this program, they received no outpatient experience with patients with developmental disabilities.

Is it really important to learn about developmental disabilities? The literature on developmental disabilities suggests that it is. Of the 1 percent of the population who have mental retardation, 30 percent to 70 percent have a psychiatric comorbidity. What should we be learning and how should we learn it? Early didactics and teaching on rounds and in clinical case conferences can show us the important role of the psychiatrist in caring for patients with developmental disabilities and their families.

The most important teaching may require a frame-shift in approach. We need to avoid learned helplessness with these patients, learning instead what we can and cannot do for them. Moreover, it is crucial to understand the psychiatrist's role outside of the clinic or hospital as a potent advocate. A well-placed phone call or letter from a physician can cut through layers of bureaucracy and resistance that families may not otherwise pierce. We need to gain comfort in the role of an expert who can redirect a system that so often goes wrong.

When I told one of my friends in the APA/GlaxoSmithKline fellowship that I was assigned to APA's Committee on Developmental Disabilities, she assumed that she needed to console me: “I'm sorry. That's too bad.” That is sometimes the attitude that psychiatrists take in teaching and learning about patients with developmental disabilities. We care for them because they are there when we enter our inpatient units and clinics, but we rarely step outside the bounds of our collective learned helplessness. When considering advocacy for these patients, perhaps we first need to advocate for them within ourselves. ▪