Hearing Testimony and Recording Now Available
Written testimony and an audio recording of the June Department of Developmental Services hearing on the draft Real Lives regulations are now available. The Massachusetts Alliance for 21st Century Disability Policy has assembled all of the written testimony here. Audio of the full recording is available here.
We hope you will spend some time with these powerful testimonies and share them on social media. As the Department of Developmental Services considers the public input delivered at the hearing, we need your help to keep the issue front-and-center with state administrators and elected officials.
Your impact and hard work are so clear in these statements. For example, Janet Fennelly described the “dire situation for the post-22 community” and explained the importance of alternatives to traditional day programs and one-to-one services. State Representative Carmine Gentile also offered testimony, saying “If these proposed regulations are not amended, they will result in participants’ choices being substantially limited to either an employer/employee model or the Agency with Choice model in which the Agency employs a support worker. The RLL was not intended to create this binary choice, and this restriction is not in the DDS Adult Waivers, or in the general federal HCBS waiver parameters as set forth in the CMS Waiver application. There is no basis to deny participants budgetary authority when they choose to purchase support services through one or more companies.”
Liz Fahey shared the story of the “rocky start” her family experienced as they explored self-direction options for her son. She also discussed what she sees as a transition consultant who has worked with more than 200 families across Massachusetts: “I do, first, want to acknowledge the committed central office team and regional self-direction managers for their passion regarding self-direction and genuine commitment to making this all work.”
“That being said, what I unfortunately witness too [is a] disconnect between Regional SD Managers present versus what Area Offices will approve combined with their lack of detailed knowledge or enthusiasm regarding self-direction. I witness this with my clients, and I hear this from families I know using self-direction. This…creates a lack of trust, enormous inequity, and a lot of extra work for families and for DDS staff. Without clear regulations, Area offices make decisions often contradicting or not in line with what the regional self-direction managers are communicating which [is] consistent with the Real Lives Law, and we are all left struggling – families and DDS.”
Ann Berube captured the sentiment of many people who testified very simply.
“People need more support, not more hurdles.”
