Drew Rego of Tewksbury was born with a genetic disorder and epilepsy. His disability presents itself in a complex way. Just six years old, Drew lives with his parents, Jason and Erin, as well as his brother Dominic. Drew’s care needs are 24/7, but despite all the challenges, he’s always smiling! Drew loves music, animals, and being outside in the warm fresh air.
Families like the Bostics in Methuen, Massachusetts are struggling to find qualified and reliable direct support workers. James Bostic is 19 years old and lives with his mother, Beth, a single parent. James has a main diagnosis of Kernicterus, which is a brain injury caused by severe jaundice. He struggles with motor control and is not able to walk or talk.
The Registry bill was filed by our dedicated sponsors, Senator Michael Moore and Representative Linda Dean Campbell, and made excellent progress in the 190th legislative session. It passed through the Committee on Children, Families and Persons with Disabilities and it passed unanimously through the Senate Ways and Means Committee. As the bill came to house consideration, some parties raised concerns about due process for those accused. Negotiations resulted in a revised bill filed as H101 for the 191st legislative session (2019-2020). The Registry will be overseen by the Disabled Persons Protection Commission (DPPC).
The legislature fully supported the Governor’s budget recommendation and added $17,850,000 to them for a total increase of $165.85 million. Legislators heard our concerns about the gaps in the Department of Developmental Services (DDS) line items including Family Support, Community Day and Employment, Transportation, Autism Omnibus, and the Autism Children’s Waiver, increasing funds for these services. In addition, Residential Services received a significant increase for unmet needs, the updated Turning 22 formula continued, and Mass Concurrent Enrolment dollars also grew.