On Tuesday, September 9, The Arc participated in a key hearing before the Joint Committee on Children, Families, and Persons with Disabilities, which highlighted four of our priority bills. Thank you to the many people who testified and to Committee Chairs Senator Robyn Kennedy and Representative Jay Livingstone and Committee members.
Healthcare Standards
First, The Arc of Massachusetts and advocates testified in support of our healthcare standards legislation. This bill requires training for healthcare professionals on how to better care for individuals with intellectual and developmental disabilities (IDD) and autism.
Individuals with disabilities deserve to live full and healthy lives with equitable access to quality healthcare. CEO Maura Sullivan testified about how this bill can challenge pervasive inequities and create a healthier future for those with autism and IDD:
“I want to acknowledge the many extraordinary doctors who are experts in treating patients like my sons. But they are the exceptions. We simply do not have enough of them. People with autism and IDD have a greater healthcare needs, yet we have less access to care and suffer from more healthcare disparities. This is in part due to a lack of training. This bill establishes reliable standards of care and continuing education requirements. It also addresses the emergency department boarding crisis, where patients with autism are left in emergency rooms for days or weeks or longer.”
Supported Decision-Making
The Arc of Massachusetts and dozens of advocates recently provided testimony for legislation that would create a legal framework for supported decision-making (SDM) – a model that enables individuals to make their own decisions with the support of the people that they trust.
The Arc’s Nora Bent and advocate Jonathan Gardner co-chair a broad coalition of advocates in support of this bill. Nora’s testimony encapsulates why this legislation is so important:
“Making this bill law would help to ensure that SDM is recognized widely in our communities as a safe and dignified option for all who want to use this model.”
Jonathan Gardner spoke about what this bill means to him: “SDM is not meant to replace guardianship; it is simply another option. With the right supports, people can make their own choices, lead their own lives, and even survive their hardest battles, just like I did.”
We are so grateful for all of the advocates and experts for speaking on SDM and what it means to them. Thank you to all involved!
Universal Changing Stations
During the recent Joint Committee on Children, Families, and Persons with Disabilities hearing, The Arc of Massachusetts also testified in support of legislation that would require universal changing stations in all public buildings.
People who require assistance with toileting deserve dignity and full accessibility when leaving their homes, no matter where they are. The Arc works closely on this bill with Changing Spaces Massachusetts and we are proud to continue to promote community inclusion and equitable accessibility in restrooms and in all spaces.
We want to thank the many advocates who spoke in support of this bill and shared compelling stories about why this bill is so needed.
Tommy’s Law
We recently testified on Tommy’s Law, a bill requiring more training and clearer discharge plans for use of life-saving medical equipment. Tommy tragically passed away due to improper usage and care of his seizure detection monitor. This legislation was born out of that horrible incident to make sure that this type of preventable tragedy never again occurs.
We are so grateful to be working with Tommy’s family and others on this lifesaving bill. We also want to thank the many individual advocates who testified by sharing stories and unique perspectives throughout the hearing.
