Last Tuesday, September 24, The Arc testified for a number of our priority bills. Hearings were held by the Joint Committee on Public Health and the Joint Committee on Children, Families and Persons with Disabilities.
Our team testified for five bills including ABA for Adults (MassHealth), PCA – Cueing and Prompting, An act regarding Aversive Therapies, Operation House Call, and Hospital Training. The Arc is grateful for the individuals and family members who submitted testimony and came to the state house in person. Excerpts of some testimonies may be found below.
The Chairs of Children, Families and Persons with Disabilities were especially moved by Ryan Horrigan and his clear and compelling testimony for adult coverage for ABA services by MassHealth.
If you wish to advocate for this bill or any of our bill priorities, there is still time. Please contact Maura at firstname.lastname@example.org.
Enter Operation House Call. It’s a no brainer. Training young medical professionals on the basics of autism. Simple, impactful, and brilliant! The same goes for Hospital Training for medical personnel. A little bit of the targeted knowledge can lead to successful patient/doctor health care visits.
Please support these two important training modules. There’s a reason the rest of the country looks to Massachusetts as the gold standard in healthcare. But the gold standard needs to be implemented for all patients. For those with autism, being able to access a primary care doctor in adulthood should come from a list of 1,000 doctors, not twenty.
The system of care within both settings simply was not equipped to provide the most patient-centered care for a nonverbal patient living on the autism spectrum. My son has spent a total of 84 days of his life as an inpatient, in a medical hospital and I am truly convinced that had his medical team had a better understanding of his autism specific needs that total length of stay would have been reduced dramatically.
The Arc believe that the Commonwealth needs to step up and address the health disparities for people with autism and other disabilities. We believe the one place that should understand disabilities and provide competent care and comfort is your doctor. We know that the bias that leads to problems with treatment and assessment is unintentional and with foundational and experiential learning we are able to turn this problem around, but we need your help.
Doctors must partner with families. When it comes to individuals who are nonverbal or have communication limitations – we know our sons and daughters best. I have studied my son’s sounds, gestures, eye gazes. I know when he is uncomfortable. He communicates in his own special way. Together as a team, doctors and parents and patients = best care possible.