In 2001 my son Alex was born prematurely with a rare condition called ‘Partial Androgen Insensitivity Syndrome (PAIS).’ Otherwise healthy, his condition meant that by the age of two, Alex had gone through three major surgeries and twelve smaller procedures. Also, during these first two years, he was ill a lot because his immune system was very very low. At the time, my health insurance refused to pay, arguing that our newborn baby’s condition was pre-existing. It was a hard time. We were new parents of a child with a very rare condition, struggling to figure out how to care for him, and then would open bills for like $150,000! Really, you just don’t know what you’re going to do! But, we fought and got him covered.
“For me, Medicaid matters because it has contributed to my son’s ability to speak and to become more integrated and a contributor in our community.”
Then, at about the age of two, although his physical health was improved, I noticed that he had started to regress in his talking. Sometimes he would just sit and look at a wall like there was something there that was capturing him, but there was nothing there; just a wall. He also started exhibiting a lot of repetitive behavior.
Early on my family told me, “Don’t worry, he’s just different.” His pediatrician told me to give him some time; he believed he would get better. But after a year of seeing him regress more and more -- crying when he was in social situations, crying when he saw somebody that he didn’t know, crying when we would try to break his repetitive behavior – my husband and I had him tested at Meeting Street. They sent him to the NeuroDevelopment Center at RI Hospital where he was diagnosed with autism.
At the time, we were told he qualified to be institutionalized and that he would likely never speak. But I refused to believe that. I refused to believe that the son of a woman who loves to speak, would never speak himself. I was not going to let that happen! So, we enrolled him in the Warwick School Department’s ‘Child Inc.’ and have kept him at home and attending the Warwick schools ever since. At school he gets therapy, and we also enrolled him in an after-school social group therapy program six days a week. Now, with the love and support of his family, and thanks to the intensive therapy he gets both in school and after school, he speaks!
But, just like we struggled when he was a newborn to get his healthcare covered, pretty quickly after his autism diagnosis we found that the therapy he needed wasn’t covered by traditional insurance. That’s when we were told about the Katie Beckett program, a Medicaid program designed to help families with children with severe physical and developmental challenges.
Had it not been for Katie Beckett, we would not have been able to afford the types of therapy that have helped Alex speak, interact, and engage in society. But also, Medicaid helped connect our family to broader support networks in the community – other moms and dads through programs like the Autism Project. It’s done more than just pay providers, it provides coordination of care and wrap around services and programs that have helped Alex and our family to thrive.”