My name is Maura Sullivan, I am the Director of Government Affairs for The Arc of Massachusetts. I am happy to be here today to support the Dental Access initiative spear-headed by Senator Chandler and Representative Pignateli. The Arc is committed to this legislation because it aligns with our health policy priority – which is to improve access and reduce disparities in all areas of health for individuals with intellectual and developmental disabilities, including autism. And the disparities are grave. For our community, access to dentists is a huge challenge.
The Arc has worked with the dental coalition and state house leadership to add language to this legislation that will require the Dental Hygiene Practitioner to have training in the oral health care needs of people with autism and other intellectual and developmental disabilities. But today I am here to support this bill in a more important role – that of a parent of two boys with autism. I would like to briefly share a story.
Our home is full of love and chaos. I am a proud parent of three amazing children. My two boys are 15 and 12 years old and both have autism and mitochondrial disease. They keep my hands and heart full every day!
Life with Gillian, Neil and Tyler is sometimes all laughter, a lot of hard work and often we are in crisis. From the time the boys were diagnosed with autism – oral hygiene meant tackling them with a tooth brush twice a day, without great success. I knew it was so important for them to see a dentist but struggled to find someone that would take them. I ended up finding a dentist that was three towns away and his practice didn’t take Mass health but I took them there anyway. I felt hopeful.
Both the boys had stomach problems, especially reflux which had been affecting their baby back molars. The dentist never mentioned any problems with their teeth and did swift exams with nothing but positive remarks. Then on our 4th or 5th visit, he told me to call the hospital and book operating room time. He said, he hadn’t been able to treat the boys in his office and was just waiting until their oral decay was bad enough to put them under anesthesia. Last thing I remember him saying was, “book it soon because they are likely in pain”.
My heart dropped. They desperately needed improved access to dental care and prevention. They deserve better care, more effort and I needed more communication and oral hygiene support strategies. In the OR, they both needed many pulpotomies and extractions. In many ways, I understand the struggle for the dentists, my children are challenging in the chair – but with more knowledge, time and interest, good oral health is possible for people with all kinds of disabilities.
Please support the Dental Access amendment 479 that is currently in conference committee. From my family and my community it represents the positive change to eliminate the extreme disparities.