Nearly three years ago, I remember standing by my wife's hospital bed as she asked the nurse, "Is our son OK? Is he going to survive?" My wife was still numb, weak and shaking in recovery from her emergency C-section, while our son, born two hours earlier, was en route via ambulance to a larger hospital, better prepared to handle newborn brain injuries. The three of us, a new family, were unsure whether we would be together again, and all were fearful of the future.
Andrew had suffered from an unpredictable brain bleed in utero, essentially a stroke during pregnancy, which changed the anatomy of his brain, partially paralyzed the right side of his body, and severely weakened all of his muscles. It was a life threatening event, but the sad part of our story ends there. Not only did Andrew survive that day, but each day he continues to grow stronger, and each day his smile is changing our lives and the world around us.
Today, Andrew is a silly, slightly mischievous, brilliant child with a face that some say reminds them of a peaceful watercolor painting. He is much like other 2-year-olds. He loves to swim, play with his trucks and ride his tricycle. You may wonder how this is possible? How did he, indeed how did we, arrive here after such a tragic start?
At three months old, Andrew started working with therapist from the New York State Early Intervention Program (EI). Today he receives almost 10 hours of therapy each week, both at home and at day care. Each hour, Andrew and his therapist have a plan: Play, laugh and pop bubbles with your right arm. Play, laugh and say "MaMa." Play, laugh and learn to use your new walker. It's work, surely, but packaged as play so Andrew engages. These are empowering, positive interactions that are uniquely designed to meet Andrew's needs, supporting the development of Andrew's brain, creating new pathways for learning. What's more, this same team has supported Jen and I through an exceedingly frightening and stressful time, helping us understand our situation and his.
Shockingly, though, this program is being dismantled by Gov. Andrew Cuomo's administration that apparently has prioritized addressing deficits over disabilities.
New York had an EI program that was the envy of many states until earlier this year. Due to regulations stemming from a change in state health care law enacted by the Cuomo administration, and which directly contradict decisions voted upon by the Assembly and Senate, EI therapists and other providers have gone unpaid since April 1. They have involuntarily become volunteers. I believe their drive to support the critical needs of their clients has kept them on their jobs, but that cannot last. We have heard from therapists who have continued to work, many accumulating tens of thousands of dollars of unpaid work (the statewide number is now in excess of $24 million). Without remedy from Albany, many are now being forced to leave the program, resulting in loss of services to families. Eventually, the program will disintegrate from the inside.
I still remember the desperate fear and desolate hopelessness we experienced in those first few hours at the hospital. Unfortunately, there are other families facing that situation right now, and there will be more. I hope that New York's EI program will be rescued from this budget fight, so that its therapists can be there to support those families and their children they way they were there for us.