I have vivid memories of the holiday season from my childhood. From the time the Sears Roebuck catalog arrived at our home, I scoured the toy section, looking for ideas for my Christmas list. With pencil and paper in hand, I would print each item along with a detailed description so Santa would know exactly what I wanted. Christmas Eve, the list was carefully taped to the fireplace next to my stocking and was wisely removed by Santa when he dropped off the toys. “Wisely”, because …I never got most of what I asked for.
One year a camera was at the top of the list. Sure enough, one was waiting for me the next morning. After the initial excitement (and upon closer inspection), I realized that it was a creatively disguised water gun that squirted unsuspecting models. For many years I requested a friend for my first Barbie but Santa believed that one Barbie at a time was enough, so Malibu Barbie did not show up until her predecessor had brain surgery so I could see what was really in her empty, little head. Each year my list became a little shorter and increasingly more realistic. I learned to edit my expectations in order to minimize my disappointment. Eventually, both the lists and the dreams were replaced by a bar placed low enough to ensure success.
So how does one create a vision for health care reform that will meet the needs of individuals with developmentally disabilities? Do you keep the bar low to guarantee that all your goals will be accomplished? And what does that look like? As a human being, I attempt to avoid pain whenever possible and disappointment is painful. However, without big hopes and efforts, adults with autism, Down syndrome, cerebral palsy, epilepsy, and the like will continue to struggle to access a health care system that is ill-equipped to meet their special (and at times complicated) needs. I’m looking for some dreamers who are willing to face the pain in order to realize improved health outcomes at all levels.
