transcript

transcript  Special Commission on State Institutions May 15, 2025

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>> [Live captioner standing by] >> Anne Fracht: Hi, everyone. We'd  like to call the meeting of the Special  Commission on State Institutions to order. 

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My name is Anne Fracht and I'm one of the  Commission's two chairs. Kate Benson will 

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be leading the meeting with me today. As usual, before we begin, we'd like to 

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let everyone know that the Commission  meeting must follow the Open Meeting  Law. Any votes taken during the meeting will be done via roll call vote.  

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We ask that Commission members  please mute themselves when they   are not speaking and use the "raise hand" feature if they would like to speak.  

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Before speaking, please state your name so that everyone knows who's talking. For 

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any questions posted from the audience in the question and answer for this meeting, 

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CDDER will be reviewing the questions and  holding them until the end of the meeting.  

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Today's meeting is scheduled for two hours. We  will have a break midway through  the meeting, at about 4 p.m.  

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Kate. >> Dr. Kate Benson: All right. Thank you Ann, this is Kate Benson, good afternoon, everyone. To  make sure everyone can participate in the meeting, 

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we ask the following: We have CART services  supporting our meeting today. These are captions 

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that help people follow the discussion. If  you need help turning on these captions, please let us know. We ask that people  speak at a non rushed pace and provide 

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yourself with a brief pause for the CART transcriber to write what you have said.  

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We ask that you speak with as few acronyms as  possible. Doing so will help all participants 

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to understand essential information that is shared  here. We will try to remind folks of these items 

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I just mentioned, if needed, during this meeting  and to keep us on track. When we end this meeting 

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we will have notes made available based on what  we talk about today. This meeting is also being 

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recorded and the videos are available on the  Commission's mass.gov page and on YouTube.  

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Next slide, please. >> Anne Fracht: We hope   everyone has had a chance to review the agenda.  These are the topics we'll be discussing today. 

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We'll recap last meeting, vote to approve  the meeting minutes, discuss remaining items, 

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next steps and to vote to adjourn the meeting.  We're pleased to welcome some special guests, 

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so we'll be adjusting our usual order of business.  We'll begin with our guests and hold the vote on 

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the minutes afterwards. Following that, CDDER  will provide a recap of our last meeting. We 

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will then vote to approve the minutes from  the meeting. Next we'll review the work of 

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the Special Commission and hold a final discussion  on any remaining items. We'll conclude the meeting 

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with a vote to adjourn. Next slide, please. >> Dr. Kate Benson: Good afternoon. Again. This 

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is Kate Benson, it's a privilege to welcome two  distinguished public servants whose vision and 

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dedication helped bring this Commission  into being, senator Michael Barrett and   Representative Sean Garballey. Senator Barrett  has long been a thoughtful and determined 

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advocate for people with disabilities. His  commitment to this work began decades ago, 

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when he mentored a young resident at Fernald  State School. That personal experience left 

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a lasting impact and today his leadership  continues to ensure that the Commonwealth 

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does not forget the lives and stories of  those who lived in State Institutions.  

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Representative Garballey has been a steadfast  champion for inclusion and disability rights   throughout his legislative career. His passion for  justice and equity is evident in his support for 

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this Commission and the people it aims to serve,  both past and present. Thanks to their efforts, 

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we have this opportunity to examine a difficult  chapter in our history with care, honesty, and 

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purpose. At this time I'd like to invite Senator  Barrett and Representative Garballey to say a few 

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words. Please join me in welcoming them. >> Senator Barrett: Hi. How are you. Senator 

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Barrett here. Very pleased to be joining  Representative Garballey and members of the 

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Commission. I just want to say how amazing your  work has been. This is really a departure from the 

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kind of bodies the legislature typically creates  and then subsequently here's from. We don't often 

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we too little hear from people who combine  professional expertise like you all have with 

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lived experience in many cases. It's we tend to  learn things oftentimes that are a little less 

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round and authentic and in the end a little less  credible. You guys have gone in another direction. 

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You've combined you found individuals who are  both expert and rooted in the experiences that 

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we seek to excavate the history of. So I'm just  delighted to have been a part of creating this.  

5:45

I notice Alex Green is with us. He is a  constituent. I used to go into his bookstore 

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in on Moody Street in the old days. He has moved  on to other, to live other lives, so to speak, but 

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he's remained a Waltham resident and I represent  the city and surrounding towns. I spent regular 

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time myself as a college student, and that was  a long time ago, we're talking about the 1960s, 

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I spent time as a college student as a big brother  at the Fernald school, I still remember the little 

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boy who lived in the green blind unit and  that's so named not because it was green, 

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but because a Dr. Green was associated with the  school. I still remember that little boy and 

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taking the bus out to Waltham, which seemed to be  in the country those days, that shows you how the 

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perceptions of the young person can change as the  person ages, I realize now that Waltham is not out 

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of the country, but what did I know at the time. In any event, this has been a personal journey for 

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me because of my experience with Fernald. As it  happens, my great grandmother spent 20 years at 

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the North Hampton State Hospital, she was the  mother of 12 kids, the oldest of whom was my 

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grandfather. When her husband died, just before  the 12th child was born she had an emotional 

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collapse and I don't need to tell you that in  those days the system and the families didn't 

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know how to deal with these things, and in this  particular case my great grandmother left an 

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orphaned family of 12 kids who then proceeded to  raise each other without ever disclosing their 

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mother was not on the premises but was at North  Hampton. The world new their father was dead but 

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the rest of it was a closely held family  secret, again symptomatic of that era.  

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I now have family members, cousins of mine who  have asked me quite independent of this state 

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commission whether I can find any of the details  of my great grandmother's stay at North Hampton. 

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I can't so far. You can find pictures of her  as a beautiful young woman on the Internet 

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because the Mormon church and others made all  kinds of genealogical research available. But 

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what you can't find is any indication of that  missing two decades of her life where she was 

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absent as a mother and had to leave her kids to  their own devices in Worcester, Massachusetts.  

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So there are lots of ways in which family  stories converge, don't they? And all of 

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it now comes to a head because of the amazing  work that you folks have begun. We know that 

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your work is not over. This is really more of  a launch than a conclusion. But the beginning 

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you've made is incredibly important to  so many families, one of whom is mine.  

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So I want to thank you very much. And again,  I want to thank Representative Garballey for 

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his collaboration and partnership. He's been  an amazing friend to all of us, and I've been 

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delighted to work with him on this project. >> Representative Garballey: Good afternoon, 

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everybody. Thanks so much for welcoming me  and Senator Barrett to this incredibly hard 

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working Commission meeting. As Senator  Barrett just mentioned in the beginning 

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of his comments, you know, we don't  always find that good work, hard work 

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comes from these Commissions. And part of the  reason for that is because Commissions really 

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can only thrive if the members of each Commission  are doing the work and pushing it forward.  

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And many times Commissions fall flat because that  doesn't you know, it doesn't have that. This one, 

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as Senator Barrett just mentioned, is really a  gold standard example. I think you could put it up 

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against many Commissions across the country that  worked so hard in trying to advance statutorily 

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requirement that we were able to get in to the  original bill to move these issues forward.  

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I first want to thank each member of this  Commission, as Senator Barrett mentioned, 

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your work is not done. We're just so  grateful. You know, service can you know, 

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when you serve the public a lot of sacrifice  can happen. So, you know, you might have been 

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away from some personal issues, some family  obligations, and for that I thank you.  

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I also want to thank my good friend, Senator  Barrett, who's been so passionate, well, on so 

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many issues that we're able to partner together  on; but on this issue specifically, he really is 

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passionate about individuals with disabilities.  He talks about his family's experience. And I can 

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tell you, he talks about it in public, but also  in private. He is so passionate on this issue, 

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but on so many bills and, you know, I want  to thank the members of the Commission for 

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really supporting our public records bill. Senator Barrett and I have partnered on that 

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for many years now and because of his leadership,  I think we're heading in the right direction of 

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getting this legislation passed and I'm really  hopeful due to his hard work and everyone, 

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all the advocates on this call, that we're  going to be able to get this passed.   You know, everybody is motivated differently;  right? For me, when I partnered with Senator 

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Barrett and worked closely with our good friend  Alex Green Alex, congratulations on your book, 

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by the way you know, Senator Barrett really talked  about his family and talked about families who've 

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been impacted across the Commonwealth when it  comes to the history of State Institutions.  

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For me, I took a long walk around Metford, and I  looked at the stones at Metford and all of them 

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had a C or P or dash and number. There was no name  associated; right. There was no history of the 

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individual who had passed away. There was no sense  of, you know, establishing any type of dignity 

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that that person should have had. And so for me,  I have a personal mission to make sure that these 

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individuals and their stories of who they were  as individuals was told and that this history, 

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no matter how difficult of a history it is,  and it certainly is a hard history, that it 

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must be told; that it must be highlighted. And what I had envisioned has absolutely 

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been met by the work of this Commission and  the work of each member of this Commission, 

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and I'm just, I'm really overwhelmed by the incredible work and dedication that 

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each of you have come to this Commission in doing. And so I'm really appreciative.  

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As Senator Barrett has mentioned, this is not the end of your work. I know there's 

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many recommendations with more work to be done in the future. But as Senator Barrett mentioned, 

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you know, we're proud to be partners in this work and that's not going to go away,   and I'm really looking forward to continuing to  roll up my sleeves and help in any way that I can 

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the mission of this Commission as a whole and the individual members of this Commission be realized.  And any role that I can play in making that a reality I'm really looking forward to doing.  So thank you all very, very much. >> Dr. Kate Benson: Thank you both so 

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much for joining us. And I think I can speak for almost everyone on this Commission and say that we 

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are honored that you wanted to be our partners and that you have supported all of the amazing work that this Commission has done every single person on this commission putting their heart and 

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soul into this. We really this wouldn't have been possible without the two of you, so thank you.  

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And I'm going to hand it over to Anne. >> Anne Fracht: Now I'd like to invite 

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Emily from CDDER to provide a high level recap of our last meeting 

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before we vote to approve the minutes. >> Thank you, Anne. This is Emily. So in 

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the last meeting Kate shared that there would  be a memorial on May 23rd at the bell Cher town 

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state school cemetery. She also shared there  is news coverage of another fire at the old 

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Fernald State School and an arson investigation is being opened by the state fire marshal.  

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Alex shared that law makers and agencies gave good feedback about the Commission's work in 

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prior meetings and he suggested building a museum may be challenging because of some of the 

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money limits that are happening right now. Sam presented a recommendation about making 

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it easier for family members to get medical records of loved ones who have passed away. 

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The Commission talked about the laws related to this and then voted to approve the idea.  

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Kate shared five recommendations to help protect  burial sites, watch over cemeteries better, 

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and create a fund to care for the cemeteries forever. The Commission voted to approve all five recommendations. Commission also voted to recommend ending 

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Chapter 113, which is a law that let uncleaned bodies of people who lived at institutions and 

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died there to be used for medical research.  The recommendation also called for official 

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apologies and records from places that used those  bodies. The Commission agreed on short term and 

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long term changes to prevent this practice  in the future in their recommendation.  

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Alex shared three recommendations for  the framework for remembrance. One, 

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to conduct disability study to build the  Disability History Museum. Two, to get a formal 

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apology from the governor for the way people  were treated in the institutions. And three, 

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to teach disability history in schools. The group said these were important for 

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learning and respect. The Commission  voted to approve all three.  

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The Commission talked about ongoing and continuing work after the final report of 

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their recommendations. They talked about how this would likely require more funding and support 

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from lawmakers as well. There was agreement to talk more about the potential for continuing the 

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Commission during today's meeting. Thank you.  

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>> Anne Fracht: Thank you, Emily. Kate. >> Hi, this is Alex. Can I jump in for just a 

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second. Emily, thank you so much for that overview  and I wonder if before we move forward into voting 

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on the meeting minutes and next steps, since  we're fortunate enough to have Senator Barrett 

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and Representative Garballey with us at the moment  and we just recapped some of the recommendations 

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that we're going to put forward, I'm wondering  if it might be possible just in case folks have  questions for the Representative Or the Senator just about process or how we go about doing some 

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of these things or open questions if folks,  if we could open up the floor for that, if you 

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think it's all right to do, Kate and Anne. >> Dr. Kate Benson: Yes, absolutely. Anne, 

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any objection? >> Anne Fracht: No.   >> Dr. Kate Benson: All right. So we will open the floor for questions for Senator Barrett or 

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Representative Garballey. Don't be shy. >> Alex: 

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The teacher in me will go first, if it breaks the ice.  

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>> Senator Barrett: Actually, Alex, I'll offer I'll ask a question of the group, 

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if folks don't have a question of myself  and Sean. But I don't want to cut you off,   I don't want to cut the boss off. >> Alex: No. You go for it, please, Senator.  

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>> Senator Barrett: One question you might well ask us is whether these 

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Commission reports have impact, and they do with the proper marketing, you might say. 

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They're not a machine that runs of itself. You don't launch it into the world and see it grow to 

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adulthood completely untended. But with some TLC from the Commission, your report can travel far.  

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But there is some marketing to be done. Your chief opponent here, I think, well, as we know there are 

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two potential sources of opposition. There are, of course, the elements of the disability community 

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that want privacy exalted above all and you know who in the community would be in that work. They 

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certainly carry outside authority and credibility,  so it is important to the degree that positions 

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can be reconciled that they continue to be at  least a part of the conversation, even if we need 

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to respectfully disagree with them in the end. But the larger source of opposition is just the 

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sheer press of business of all kinds. It never stops. And now a lot of it is emanating from Trump 

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and has to do with cuts that are going to be  coming or threatening to MassHealth, to DMH. So 

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legislators can always legitimately put off action because there is so much on their plates, 

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and this is legit. Somehow breaking through the noise and the clutter becomes the real job. And 

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somehow it has to be done, I should say. A Commission report can often give a reform 

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the additional momentum that it needs to break  through the noise. That's why the work you've done and by the way, you've done it on budget  and on time. That's the other thing you should 

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be celebrating is that you folks pulled this off without asking for indefinite extensions 

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on the fundamental work budget. The life of the Commission needs to continue because 

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you've got a lot of work ahead of you, but to have pulled this first stage deliverable 

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into being on time is a big, big deal. So we want to thank you. But as I say, 

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I'm anticipating a question, so to speak,  and what you need to do metaphorically is 

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to walk the Commission report around and draw  people's attention to the Executive Summary, 

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with particular attention, obviously,  to the Joint Committee on Children, 

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Families and Persons With Disabilities, let's say, as well as the disability caucuses that function, 

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the House and the Senate. You have constituents who will be more responsive than most and we 

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ought to be able to move this public records change, for example, with their help.  

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So granted your work is not over and I know your work can be wary, you have other things to attend 

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to in your professional lives and your personal lives, but what you've pulled off to date is 

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pretty amazing and it can add the needed impetus to the next legislative reforms that you all seek. 

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So be of good cheer, you've come a long way. >> Alex: You were out in front of my question 

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spot on. If I can ask a little bit more in that  direction. How do we as a Commission continue to 

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exist in some form? And with that, I know that  money is the last thing anybody wants to hear 

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anybody asking about right now, but a significant  amount of the work that we're very proud of is 

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only here because we were able to be introduced  to and then have the good fortune to work with 

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CDDER, from UMass, to really delve into these issues and be our constant presence 

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while we've had so many things in our lives to attend to. And that, of course, was possible 

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thanks to the gracious amount of funding that we were able to get to launch the Commission.  And I'm wondering what you recommend for next steps in that regard because, 

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of course, accountability on the recommendations is a big deal to all of us and I think we are committed to making sure that that work is done, 

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but certainly need the scaffolding and supports there to make it possible. I wonder from both of 

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you what your thoughts might be about that. >> Senator Barrett: Well, I want to hear from  Sean. But first of all, I want to thank CDDER myself and I should have mentioned 

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CDDER in my original remarks. What the senator has  accomplished here in collaboration with you all 

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is pretty amazing stuff. Refresh my recollection now just to get down to brass tacks, what was the 

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original appropriation? I think I know, but I want to make sure my sense of the numbers confirm.  

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>> You are asking a writer about numbers, which is dangerous, so I'm going to turn to Emily she beat me to it, $145,000. >> That's what I recall, too. So 

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there's good news here. All good news needs to be qualified with hemming and qualification and 

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conditionality. But nevertheless, the good news is that it's not an unachievable amount to renew, 

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I mean, another 145,000, or thereabouts. What we now need is a business plan or a plan, a budget, 

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if you will, because I see you guys going in two different directions potentially.  

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One, you need to do a lot more record aggregation,  a lot more data gathering, if you will, so that's 

27:11

the substantive work. And then you might also need to do some advocacy work around the proposed 

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change to the public records law which has been lagging and which clearly needs help.  

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You do need to work up a budget, especially with respect to the continuing research effort. And 

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then going for the dough is not easy in these straightened times, but is possible. And we can 

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talk about ways to do that. But, for example, if, getting creative here, let's say you were able to 

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identify four legislators with an interest  in the subject matter. It could be because 

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as you circulate the report and this is important for your members to keep in mind as you circulate 

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the report and you go into the offices of legislators, one thing you want to be alert to are 

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personal stories like my great grandmother's. By the way, I didn't know about my great grandmother 

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when I first became interested in this Commission.  It was actually her story the story I got from my 

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mother was cleaned up, was not accurate, but I  think it was the story that her dad, who was the 

28:45

oldest of the 12 kids had told her. Remember there  was a lot of shame and cover up in those days. It 

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was not until I talked to a cousin of mine that I learned she spent 20 years at North Hampton and I 

28:58

only learned that last month. I'll tell you how it happened, he read about this Commission. And this 

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is a cousin, I should say it's my mother's first cousin. He's the son of the eleventh of twelve 

29:13

kids, my mother was the daughter of the oldest of the twelve kids. Huge difference in ages. 

29:21

My mother's first cousin but he's younger than me.  And Nick Burns was in touch with me and said gee, 

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I just read that you were on this Commission. Did  you know about our grandmother. He'd forgotten 

29:34

that we actually are separated by a generation.  He was talking about my mother's grandmother.  

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In any event, Nick Burns told me about her 20  years at North Hampton state hospital which I 

29:54

both me and the senator that we will work with you and we will find whatever avenue possible to 

30:02

get the money necessary to continue this really, really important work.  

30:09

I agree with everything the Senator said in terms of earmarks. You know, 

30:15

the only caveat to that is the menace in the White House right now, any action he does on tariffs, 

30:24

any action he does on Medicaid, as the Senator mentioned earlier, that very much could hurt our 

30:30

revenue flow. My second budget was in 2009, when we lost about $4 billion in revenue because of the 

30:39

collapse of the banking industry federally. Now, I don't anticipate that to happen again, 

30:45

but you never know with this guy in charge. And so if revenues you know, 

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back then we had no earmarks because we had a  four year period where revenues were just gone.  

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Absent of that, and knock on wood, I think we as the Senator said very keenly, we should be 

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able to cobble the resources necessary to  continue this Commission's great work.  

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To follow up on the Senator in terms of reaching out to Reps and Senators, 

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he couldn't be more right on this. This is  around collaborating with lawmakers. You know, 

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in terms of people to, you know, to really go  after; right. You will release the report and 

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you will send it to senators. You will send it to  Reps and I'm sure you'll have Senators and Reps 

31:45

reach out to you. Those are certainly people that you want to continue a relationship with because, 

31:54

you know, they care about these issues. You know, I would certainly reach out to the 

32:01

Reps and the Senators who represent areas where the State Institutions were or are located; 

32:09

right. Senator Barrett cares deeply because he cares about people with disabilities, 

32:15

but also he represents with Fernald was, right. Tom Stanley, John Lawn, 

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Steve Owens, Dave Rogers, right, and you could  go across the Commonwealth at various areas.  

32:31

I would also say anyone on this call, you know,  I would really appreciate it if you would call 

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your Senator and Rep and ask them to sign on as a  cosponsor to Senator Barrett and Rep Garballey's 

32:45

bill on public records. That personal contact, that personal approach is really, really helpful 

32:54

in terms of getting legislators onboard. You know, there are so many different things that 

33:00

consume a legislator's time; right. It's not that they just don't care. It's because they're dealing 

33:07

with education and climate change and, you know, economic development. There's so many issues. But 

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obviously, this is a critically important issue and I think you're going to find an audience that really cares about this. We just need to keep them involved and keep them interested in it.  

33:30

You know, when I filed the public records bill  on the House side, I immediately found folks 

33:36

like Tom Stanley and Mindy Domm and and said this is important to me and as the senator 

33:44

mentioned they started telling me stories about  their own family. So we may not even know which 

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Reps or Senators, other ones, are impacted  with personal stories because of this.  

34:00

So we just need to continue the outreach and  continue to try to build a very wide and strong 

34:07

net. You know, we're not going to be able to  get all these recommendations passed overnight; 

34:16

right. This is going to be a lot of work in terms  of moving forward. I look forward to helping in 

34:26

all of these areas. My focus for right now really  I think has to be the public records bill. One, 

34:36

because we've invested a lot of time in being  able to get it passed, but also because I think we 

34:41

can get it passed. Once we get that passed, with  your help, and Senator Barrett's work, you know, 

34:50

I'll move on to the next thing. Right? And I really look forward to collaborating with all of 

34:57

you on having the recommendations be realized. >> Thank you both so much. If I can ask one 

35:08

follow on question and I'll get out of the way for other folks' questions. 

35:14

This all sounds amazing and is incredibly helpful for the road map we all have ahead. I 

35:21

think I have a reasonable understanding of the legislative cycle when it comes to the bill, the records bill. In terms of the type of funding approach that you're talking about, 

35:30

what time frame should we be looking for to, when  we go begin to reach out to folks and try to pull 

35:38

together a coalition of people, what should we be looking at as a, per your calendar I guess 

35:47

would be a way to describe it. >> I don't know, Alex. When do 

35:53

you think the report is going to be  completed and published or issued?   >> It will be out before June 1st. >> First of all, congratulations for maintaining 

36:03

that timeline. The budget process for the year beginning July 1st will be semi complete by then. 

36:18

So we won't be able to get money into the regular budget, but for reasons that are too difficult to 

36:26

explain, there will be three or four supplementary  budgets over the course of the 12 months. A reason 

36:34

I don't want to explain it to you is because I  really don't understand it but I don't want you to   know that. So let's just say that it's very hard  to explain, even to my wife, even to myself.  

36:46

But we have these supplemental budgets constantly  I'm actually kidding a little bit because some 

36:53

accounts run dry in the middle of the year.  Other accounts are unknowable. For example, 

36:59

you don't know how many clients are going to need X services, so you're constantly trying 

37:05

to fine tune the budget over the course of 12 months so it actually meets the client needs, 

37:10

something that's unknowable in advance. That's, in fact so the supplementary budgets which offer 

37:18

these opportunities perhaps to slip in some of the  dollar amounts, Alex, that we're talking about, 

37:24

Sean is right, in extraordinary circumstances like  the pandemic, earmarks go away. It's also the case 

37:33

that in tough circumstances like the present, the  governor basically the legislature that contrary 

37:41

to the normal rule she might refuse to disburse  monies in general, whether appropriate rated by an 

37:52

earmark or by the regular appropriations process,  in order to accommodate mid duration emergencies. 

38:01

These are the so called nine C cuts that  Governor Baker made during the pandemic 

38:07

where contrary to all expectations our  earmarks were not ever disbursed.  

38:12

So, yes, we are entering a period, as Sean  cautions us, of more than ordinary uncertainty. 

38:22

But we should, barring those we should be  looking for the appropriate supplemental budget, 

38:27

one that touches on other human services or  healthcare accounts. You wouldn't want to try 

38:33

to add an earmark for this Commission to a sup  the deals exclusively with something special, 

38:44

like a shortfall in the account for public  defendants, let's say. There has to be a kind 

38:52

of rough match in terms of subject matter. So all this is fraught with some uncertainty, 

39:01

but still we should try to figure we should try  to assume that this is doable. I like Shawn's 

39:11

emphasis and by the way, I'm going to have  to excuse myself because I have to meet my   wife in a few minutes but we should assume that  passage of this bill having to do with public 

39:23

records is a good short term priority that can  continue even as we fight this bunking battle.  

39:31

Let me ask you Alex, is there any money left  over or did the entire 145,000 get expended 

39:40

or will it be expended by June 30th? >> For that I will turn back to Emily 

39:48

from CDDER. Emily, where are we at? >> We do expect to spend the money in 

39:54

part because we were also under the impression  if we did not spend it we would lose it. So, 

40:00

you know, it would be possible for our center  to support the Commission in a bridging phase 

40:06

to help them argue for this money, make a plan,  you know, that kind of thing so that it doesn't 

40:13

need to you know, and that would be through  June we'd be billing it through June 30th,   which is when our interagency >> Senator Barrett: The reason I ask this, 

40:23

legislators can relatively get monies  carried over in a given fiscal year. Alex, 

40:33

for four or five years running we managed  to get a prior appropriation continued for   the wealth and community farm. We got them a  bunch of money and then it wasn't expendable, 

40:44

wasn't spendable within the expected time frame  for a whole bunch of reasons, some of it had to   do with the mayor. So we managed to keep it  going for five years. I'm not saying that's a 

40:59

good news story, exactly, but I'm just mentioning  to Emily that once we get you money, you shouldn't 

41:07

feel that you have to get it all spent less you  lose it, because it's relatively achievable.  

41:14

>> Emily: Thank you. >> Senator Barrett: I have   to go. I'm looking forward to continue our work.  Thank you, Representative Garballey and thanks to 

41:25

the shrine center, wonderful work product here. >> Rep Garballey: Thank you, Senator. You know, 

41:39

I would just reiterate, right, we're going  to work with the Commission to try to gain 

41:47

access to these funds, that could be through  subbudgets, through the regular budgets. 

41:52

We'll try to find a way to make this happen. I  think the work is way too important to let just 

41:59

kind of go off into the sunset, if you will. So we really look forward to partnering with you. 

42:07

And if each of you could please call your Rep and  ask them to sign on to the public records bill, 

42:12

that would make a huge difference. You  know, I think we're going I think we're 

42:17

going to get there, but all the help that  you could provide would be very helpful.  

42:29

>> Alex: Thank you so much. This is amazingly  helpful in detail. I really appreciate it. I   will put the links to the bill in the House  version and Senate version in the chat, 

42:38

folks, so you can see where it is. >> Rep Garballey: Thank you, everybody. Bye bye.   >> Dr. Kate Benson: Thank you.  Now we have a new to do list.  

42:47

>> Bye, Sean. >> Dr. Kate Benson: Thank you,   everyone. That was so fantastic to hear everything  that they had to say and we have some things 

42:58

to get cracking on; right, Alex and Anne? So before we dive into our actual discussions 

43:06

for today, we do need to vote on the  minutes from last meeting. And at 4:00 

43:12

we would like to take a break. It wasn't in  the original schedule, but we're running a 

43:17

little bit behind but for a very good reason. So draft copies of the minutes were circulated to 

43:23

members via e mail earlier this week. Does anyone  have any proposed changes to the minutes? Okay. If 

43:36

there's no changes, we can proceed with the vote.  As usual, we will be conducting a roll call vote, 

43:42

but before CDDER reads out everyone's names, do we  have a motion to approve the minutes, and please 

43:47

remember to state your name before you speak? >> This is Andrew Levrault, I make a motion 

43:55

to approve the minutes. >> Dr. Kate Benson: Thank you,   Andrew. Do we have a second. >> This is Lauri Mederios, I second that motion.  

44:02

>> Dr. Kate Benson: Thank you so much,  Lori. And now CDDER is going to read   the list of names for the roll call vote. >> Thank you, Kate. This is Christine from 

44:12

CDDER. So I will now read out members' names  in alphabetical order by your last names. When 

44:17

your name is called please respond with yes, no,  present or abstain. Elise Aronne. Kate Benson.  

44:27

>> Dr. Kate Benson: Yes. >> Sister Linda Bessom. Reggie Clark.  

44:37

>> Yes. >> Thank you, Reggie. James Cooney.   >> Yes. >> Samuel Edwards.  

44:45

>> Yes. >> Anne Fracht.   >> Anne Fracht: Yes. >> Alex Green.  

44:51

>> Yes. >> Bill Henning. Camille Karabaich.  

44:57

>> Yes. >> Andrew Levrault.   >> Yes. >> Evelyn Mateo.  

45:04

>> Yes. >> Lauri Mederios.   >> Yes. >> Vesper Moore.  

45:11

>> Yes. >> And Brenda Rankin. Did I 

45:16

miss anyone? All right. I think we're all set. >> Anne Fracht: Thanks, everyone. The minutes 

45:27

are approved. As a reminder, copies  of the approved minutes and all the 

45:34

materials from our Commission meetings are  available on the Commission's website.  

45:41

Next slide, please. >> Dr. Kate Benson: Before   we dive into this next set of slides,  if we can take a quick break. I know 

45:49

it's not actually 4:00, but if  we can take a five minute break,   return at about five before and we can dive  into the remainder of our material for today.  

45:58

[Five minute break] >> Dr. Kate Benson: 

46:17

It's 3:55, if folks want to start coming back. And  this is going to be the fun part of the evening 

46:46

where we get to give ourselves a little pat on the  back. I would like to share a summary of the work 

46:52

that we've done over the past two years, and I'm  honored to be able to be the one to share these 

46:57

with you. This is work that has centered around  truth, dignity and historical accountability.  

47:05

Our mission over the past two years has been  to examine the legacy of State Institutions in 

47:10

Massachusetts, particularly around recordkeeping,  burial practices and how we remember and honor 

47:17

those who lived and died in these facilities. We talked with descendants who wanted access to 

47:24

relatives records. We drafted a letter to Governor  Maura Healey and Secretary Walsh regarding the 

47:30

Fernald State School highlighting concerns and  laying the foundation for further investigation. 

47:37

When we received a response to our inquiry we  carefully reviewed it and drafted a formal reply 

47:42

to Secretary Walsh continuing the conversation  at the state level. We designed legal research 

47:49

scenarios for Harvard law students which they  used to explore the legal questions surrounding   privacy and access to institutional records.  A major part of our work focused on improving 

48:00

transparency around records. We contributed to  the development of a data collection tool to 

48:06

identify records not currently held by  the Massachusetts State Archives.  

48:11

We also provided guidance on a gap  analysis tool designed to assess   the condition of institutional cemeteries. Next slide. I think. Yes. I can't see it, so.  

48:25

We learned from five organizations across  the country who have restored institutional   cemeteries and found meaningful ways to  honor former residents and patients.  

48:35

We undertook extensive efforts to identify  individuals buried in institutional cemeteries, 

48:41

many of whom had previously been undocumented. We compiled names of people buried in nine 

48:47

different institutional cemeteries using publicly  available sources. We used archival records to 

48:54

identify state hospital patients buried on  site at Bridgewater State Hospital or whose 

48:59

remains were donated to medical schools. We secured permission from the Department of   Mental Health to access records from Foxboro  State Hospital to reconstruct burial lists. 

49:10

These conversations deeply influenced our  recommendations for how Massachusetts should   move forward. Overall, the Special Commission on  State Institutions accomplished a lot during its 

49:22

two years of work. It made history by becoming  the first disability led, disability majority 

49:28

human rights commission of its kind anywhere  in the world. The Commission held 16 meetings 

49:35

and created smaller working groups to focus on key  goals, including topics like a Letter of Inquiry, 

49:41

access to records, burial sites, remembrance  efforts, and recommendations for the future. 

49:48

All of this work led to a nearly 400 page  report, one of the most detailed reports 

49:54

of its kind ever done in the United States. And  best of all, the Commission finished everything 

49:59

on time and stayed within budget. Next slide, please. In total, 

50:07

we developed 24 recommendations across three  key areas. The first was memorialization, 

50:15

three recommendations, in this category. The  first was to issue a public apology for the 

50:20

historic mistreatment of individuals in State  Institutions. The second was for the state to 

50:26

conduct a feasibility study for a Disability  History Museum. And finally, the recommendation 

50:31

that we incorporate disability history into  Massachusetts' K 12 social studies curriculum.  

50:38

For burial practices, we made four  recommendations. The first is to   improve maintenance and care of institutional  cemeteries. Locate and identify unmarked graves, 

50:48

especially in some of the lost cemeteries such  as North Hampton and the Westboro Reform School. 

50:54

Repeal Chapter 113, which governs anatomical  donations and is still on the books. And finally, 

51:02

to create a public registry of individuals  whose remains were donated to medical schools 

51:07

and may not have been buried properly. As far as records access and reform, 

51:14

we had a number of recommendations, including  strengthening the rules around records management, 

51:20

preservation and access. Recommending legal  reforms to expand public and family access 

51:26

to institutional records. Supporting former  residents, their families, and researchers in 

51:33

accessing relevant records. And creating clear  pathways for transferring important historical 

51:38

records to the Massachusetts archives. We worked  closely with staff from DMH and DDS, historians, 

51:46

legal experts and family members, self advocates  and former patients to ensure that our process has 

51:52

been ethical, inclusive and historically accurate.  Our work has been rooted in a commitment to truth, 

52:00

justice, and remembrance. We hope these  recommendations will lay the groundwork for   lasting change and meaningful acknowledgment  of this part of our state's history.  

52:10

And I'll turn it over to Anne. >> Anne Fracht: As we're discussing 

52:20

the remaining items, we have the next slide. As  we're wrapping up the final meeting on the Special 

52:32

Commission, let's take a moment to go over the  few last outstanding items that still need to be 

52:39

addressed. It's important that we have everything  in order before we close out this session.  

52:49

The vote on publishing the report. Awaiting  the response from Secretary Walsh to the 

52:56

Special Commission's letter. The potential  continuation of the Special Commission. 

53:02

Publicizing the Special Commission's report and  recommendations. Oversight and advocacy on the 

53:10

implementation of the Special Commission's  recommendations. And mapping of DMH Foxboro 

53:16

cemetery and identification with records. There are still a few important things we need 

53:26

to take care of first. We need to vote on  publishing the Special Commission's report. 

53:34

We're also waiting to hear back from Secretary  Walsh about the letter we sent. We should talk 

53:40

about possibly continuing the Commission's work.  In the meantime, getting the word out about the 

53:46

report and its recommendations is a priority,  along with pushing to make those recommendations 

53:53

are actually put into action. Another task on  our list is mapping the DMH Foxboro cemetery 

54:02

and matching graves with existing records. Let's start with publishing the report. As usual, 

54:15

we'll be conducting a roll call vote, but before  CDDER reads out everyone's names, do we have a 

54:22

motion to publish the report on June 1st? >> This is Alex. I make a motion to publish 

54:30

the report no later than June 1st. >> Anne Fracht: Do we have a second?  

54:36

>> This is Andrew. I'll second. >> Anne Fracht: Do we have somebody 

54:43

from CDDER to read everyone's name? >> Yes. Thank you Anne. This is Christine   Roa from CDDER. I'll read out members'  names in alphabetical order. When your 

54:54

name is called please respond with yes,  no, present or abstain. Elise Aronne. 

55:02

Kate Benson. >> Yes.   >> Sister Linda Bessom. >> Are we waiting for   somebody to second the motion? >> Dr. Kate Benson: No. We have 

55:11

a second. Alex moved and Andrew seconded. >> Reggie Clark. Reggie Clark. James Cooney.  

55:33

>> Yes. >> Samuel Edwards.   >> Yes. >> Anne Fracht.  

55:39

>> Anne Fracht: Yes. >> Alex Green.   >> Yes. >> Bill Henning. Camille Karabaich.  

55:50

>> Yes. >> Andrew Levrault.  

55:55

>> Yes. >> Evelyn Mateo.   >> Yes. >> Lauri Mederios.  

56:01

>> Yes. >> Vesper Moore.   >> Yes. >> And Brenda Rankin. Did I miss anyone? Okay.  

56:15

>> Christine, I'm sorry, this is Jennifer from  CDDER. I couldn't hear Reggie's response. I was 

56:22

wondering if we could ask him again. >> Christine: Absolutely.   Reggie Clark. Reggie Clark. Could you  speak a little louder. I believe you're 

56:50

speaking. >> 

57:06

I'm not sure if he can hear. >> 

57:24

Christine: One more time. Reggie Clark. Seems like  he's having trouble hearing. Okay. I think we're 

57:42

all set, Kate. Thank you. >> Anne Fracht: 

57:54

Thank you, Kate. Can we  have the next discussion.  

58:01

>> Dr. Kate Benson: So continuing our discussion  of the other remaining items, we are awaiting a 

58:08

response from Secretary Walsh to our letter. We  would also like to discuss most specifically the 

58:18

potential continuation of the Special Commission.  So first let's start with does anyone have any 

58:25

questions or comments or concerns with waiting  for the response from Secretary Walsh to our 

58:32

original letter? Jenn, how long has it been  since that letter went to Secretary Walsh?  

58:43

>> This is Jenn from CDDER. The  letter was e mailed in November.  

58:51

>> Dr. Kate Benson: And we've  had no response yet, correct?  

58:56

>> Jenn: Not to date. >> Dr. Kate Benson: Lauri,   I see your hand up. Go ahead. >> Lauri Mederios: So was there a specific 

59:09

well, I don't know. Did we ask for a response? >> Dr. Kate Benson: Yes, we did.  

59:15

>> Lauri: What was the ask,  please respond that you like it,   that you don't like what are the questions  that we're waiting in response to, I guess?  

59:25

>> Dr. Kate Benson: Alex, I think you'd probably  be better positioned to address that than I.   >> Alex: I was just looking for the copy of the  letter because I don't want to misrepresent it 

59:34

and I am a mess on my computer. I don't know  if we have a copy of it. Because I do think, 

59:40

Lauri, you're right, like I want to make  sure we characterize this correctly.  

59:48

Jenn or Emily, do you have  a copy of it by chance?   >> We do. I think we just need to pull it up. >> Yes. I have it up. So the request was 

1:00:05

to get further clarity from EOHS, DDS, DMH and  DCAM on the date each facility was searching 

1:00:19

for records and a time like when they would  work together to evaluate the buildings at 

1:00:26

Medford state hospital or any other campuses  that are partially closed. The next ask was 

1:00:39

to get a description of the location of where  institutional records are being held, if they 

1:00:47

aren't at the Mass Archives. And a description  of the condition of the storage area where those 

1:00:53

records are held. Reasoning behind the decision  to store records outside of the archives.  

1:01:05

The Commission requested the agency policy for  records in the possession of DDS or DMH which 

1:01:12

relate to the individuals who died more  than 50 years ago. And a clarification on 

1:01:18

the definition of "medical records" and  what is considered a medical record. And 

1:01:24

the Commission had asked for a response within 90  days. And that was the content of the letter.  

1:01:35

>> Dr. Kate Benson: And Jenn, I know  that you followed up this spring as 

1:01:40

well asking if it a response was coming. >> Jenn: Yes. There was not anything official 

1:01:52

prepared to share at that time. >> Dr. Kate Benson: Alex, go ahead.  

1:02:00

>> Alex: This is Alex. Am I correct also, this  was a response to an initial inquiry that we made; 

1:02:06

right? So we sent the letter, we got a  response, we felt it was unsatisfactory,   if I recall, we drafted a letter for clarification  which is this one, and we have not received 

1:02:17

anything from this one. Is that correct? >> Jenn: Yes. That's correct. Sorry,   this is Jennifer from CDDER again. >> Alex: So overall, this dates back 

1:02:25

to January of '24 then, 2024, and we still 

1:02:31

don't have answers. >> Dr. Kate Benson: 

1:02:40

So I think that's, that's a conversation that I  think is probably going to need a consideration 

1:02:49

of next steps. But I think it does kind of  dovetail nicely into talking about potential 

1:02:58

continuation of the Special Commission. Obviously,  we aren't going to get a response to our request 

1:03:06

by today. So I think, you know, we heard a lot  of really great information from Senator Barrett 

1:03:15

about what it would take to continue the  Commission's work. But we have not heard from all 

1:03:22

of you about your thoughts on continuing our work  and what that could look like. And we'd like to 

1:03:29

hear from other Commissioner. Lauri, go ahead. >> Lauri: Yeah. I heard what you just said, 

1:03:40

but can I go back to the letter, or are  we still there? Are we still there?   >> Dr. Kate Benson: Go ahead. >> Lauri: Okay. So just, just playing the, 

1:03:53

I don't even know, forget about that term, cancel  that. So when those questions were reread to me, 

1:04:01

I always try to share it not from the perspective  of my commitment, involvement and endorsement of 

1:04:09

it, but from somebody I pretend I don't know  anything that's going on and I just started 

1:04:16

to work at under, you know, the secretary, and she  put this on my desk, what would my response be.  

1:04:24

And I just wanted to say, I would think, wow,  this is really, you know, aggressive. Shoot, 

1:04:31

what should we do? Do you know what  I'm saying? I'm not saying I think   it's that way. I'm saying as somebody who knows  nothing about it, I might have that response.  

1:04:40

So what I'm wondering is might it be an idea  rather than sit and wait and say, still no 

1:04:47

response, still no response, still no response,  if there might be a point person or whatever, 

1:04:53

a couple of people, whatever, that could  just pick up the phone and call and say, 

1:04:58

hi, this is my name, I'm from the Commission. We  sent a letter back in January. I just wanted to 

1:05:04

follow up in case there's any questions that you  had or if there's anything further that we might 

1:05:11

be able to provide for you to, you know, expedite  a response or to help you get the response out, or 

1:05:20

something to that, something along that thread. >> Dr. Kate Benson: Yeah. Just to clarify, 

1:05:29

the letter that we were waiting a response  on is a second letter. They did reply to our 

1:05:34

first one in January, but they didn't  give us all of the information we were   looking for. So this was a second, maybe  a little bit stronger worded request.  

1:05:45

>> Lauri: No, that's fine with me. >> Dr. Kate Benson: I know. I'm just letting you   know. But I do think we do need to talk about what  next steps are with this letter to get a response, 

1:05:55

but I guess we have to kind of talk about, will  there be point people to take this on? Is the 

1:06:03

Commission going to continue? Are we in a position  to accomplish these final tasks that are still 

1:06:13

kind of hanging at this moment? >> Lauri: What's our 

1:06:19

official end date, June 30th? >> Dr. Kate Benson: I'm going to defer to everyone 

1:06:26

else on that one, Emily, Jenn, Alex. I'm not  sure what our official date is, if we have one.  

1:06:34

>> The bill states that you need to get your  report in by June 1st. I do not believe, 

1:06:42

and I will check on this, but I do  not believe it has an official date by   which you must sunset the Commission. >> Lauri: I was just wondering because 

1:06:53

that's the end of the fiscal year, and if  this bill aligned with the fiscal year.  

1:07:01

>> Dr. Kate Benson: Alex, go ahead. >> Alex: It's a great question. I don't   think we ever included language that would sunset  the Commission and I don't think that that was 

1:07:10

intentional. So I just want people listening who  may think for the part of the conversation about 

1:07:15

how do we continue, do we continue, what do we  do, I did not mean to commit you to something 

1:07:21

forever nor is this a discussion committing you  to something forever. I think there should be a   reasonable conversation about a point where if  people would like to consider this the place 

1:07:31

at which their work on the Commission  is done, that would make great sense.   But I don't yeah, I think the money and the no,  the time that the report is due had the date tied 

1:07:43

to it of June 1st. I think the funding had some  stuff tied to it that I don't really understand,   but that sounds like that's more to Senator  Barrett and Rep Garballey's end. I do feel if 

1:07:55

we think the Commission's work should continue and  folks would like to step off the Commission and 

1:08:02

that work does continue in some way, we're going  to have that period where we need to carry over 

1:08:08

until we can get some more financial support  from CDDER, which really helps to make all of   this work. And there I would just say that  I think that how ever we decide that folks 

1:08:19

step off of the Commission should be done in  a very organized way so that we because many 

1:08:26

of the seats that people hold are appointed  by the governor or by other agencies. And I 

1:08:33

think what we would want to be able to do is  do that in a very orderly and organized manner 

1:08:38

so that it doesn't just sort of back to Lauri's  point, like sending a letter out of the blue to 

1:08:45

the governor's office saying hey, can you appoint  eight people to this is not the ideal scenario.  

1:08:50

So just doing it in an organized way, but  I certainly don't want to commit folks to 

1:08:55

it going forward; and yet, the letter is  a good example that we clearly have some   conversations that need to keep going and  that tie to accountability and fulfillment 

1:09:04

to the recommendation that we're making. >> Dr. Kate Benson: And I'm wondering,   Emily and Jenn, if there's a potential for as one  of our closing activities is that we have a survey 

1:09:17

where folks have the opportunity to very quietly  say stay or go, and, you know, maybe figure out 

1:09:27

from there if we have some added information we  need to gather just that way, to Alex's point, 

1:09:32

it's very organized and very purposeful. >> Emily: Yes. I think we can do that. This 

1:09:40

is Emily. And also, I think we can, as I was  mentioning earlier, help to bridge this time 

1:09:49

period. You know, we're still here, right,  so we will keep the e mail live. We will 

1:09:57

still have staff available and we can help you  navigate the next portion of this. And certainly, 

1:10:05

our ISA already goes to the end of June to assist  with some of those next steps and to assist with 

1:10:12

some of the distribution of the report and  things. So please know that you will have 

1:10:17

some continued support hopefully to bridge. >> Dr. Kate Benson: And I think that's really for 

1:10:26

tonight all that we need to kind of have and think  about at this point. I certainly don't want to ask 

1:10:34

people to start raising their hands and saying  whether or not they want to stay. You know, Alex   and I have already decided and Anne that forever  is just not that big of a deal. We're good with 

1:10:44

forever, and the rest of you may not be. But we  would absolutely like you to consider everything 

1:10:51

that's been said tonight, everything you heard  from Senator Barrett and Rep Garballey, you know, 

1:10:56

and let that help you make the right decision for  yourself. And as Alex said, yes, we have plenty 

1:11:06

of things to move forward with and we will also,  if we decide to stay in existence, we will have 

1:11:13

that bridging period where we will have the mile  long to do list that Senator Barrett mentioned. So 

1:11:21

we hope that you all consider all of the points  and will take all of that into consideration.  

1:11:29

One of the things that is also an open item  is publicizing the Commission's report and 

1:11:34

recommendations. As you heard, it's a nearly 400  page report. It has all of our recommendations 

1:11:42

in it. A great deal of history. And I think it's  going to be a wonderful learning tool for a lot of 

1:11:48

people who may not have knowledge of these things  that this group has so engrained in them. And we 

1:11:59

get a chance to share some of that with folks. Does anyone have questions about the process of 

1:12:06

deciding when to publicize and how it's going  to be publicized and how it can be accessed?  

1:12:17

>> Lauri: Are you talking about  publishing the report; right?   >> Dr. Kate Benson: Correct. >> Lauri: Yeah. That was actually 

1:12:23

a question I had. Who is it published to? >> Dr. Kate Benson: I believe it first goes 

1:12:30

to Alex, do you know the answer, or Emily? >> Emily: It is in the chat. The quote from the 

1:12:35

bill is in the chat about filing the report. >> Dr. Kate Benson: All right. Let me pull it   up. So the language says the Commission shall  file a report of its findings and recommendations 

1:12:45

to the State Secretary, the clerks of  the Senate and House of Representatives, 

1:12:51

the Joint Committee on Children, Families  and Persons With Disabilities, and the 

1:12:56

Joint Committee on Mental Health, Substance Use  and Recovery, not later than June 1, 2025.  

1:13:03

So the report will first go to those groups or  individuals that are listed in that language. 

1:13:13

Does that answer your question, Lauri? >> Lauri: Yes and no. So I understood that,   but what I'm wondering is, but  then where is it housed? Like can 

1:13:25

my next door neighbor look it up? >> Dr. Kate Benson: Alex, go ahead.  

1:13:31

>> Alex: Good question. So it will be  on the Special Commission's website,   which is easily available online if you type  in Special Commission, it bounces over to it, 

1:13:40

so all the materials will be there. They will also  be stored permanently at the State House Archives 

1:13:50

that are used by the legislature. So there will  be a copy on file there, I would imagine. And then 

1:13:56

we will be distributing per Senator Barrett's  request, we'll be distributing letters with 

1:14:05

specific action items out of the recommendations  targeted to each kind of lead agency or individual 

1:14:11

that we're asking to do those things so that they  don't have to go through, wade through all 24 

1:14:16

recommendations and figure out which one applies  to me, which one doesn't apply to me. We'll sum 

1:14:22

those up. And he suggested that we give them two  months to begin working on those things and get 

1:14:29

back to us with some kind of progress update after  two months; that that was a fair amount of time.  

1:14:35

Back to your point about something landing on  someone's desk, just making sure they have enough   time to process it and ask questions and think  about it given that they're busy and have lots 

1:14:44

of things on their plate. An example would be,  one would go to the Speaker of the House and the 

1:14:53

Senate President saying we have made the following  recommendations for legislative action by the 

1:14:59

State House, and we would like you to consider  these, that sort of thing. A separate one would go 

1:15:05

to the governor, to the Attorney General's Office  or to the archives, to the Secretary of State.  

1:15:11

>> Dr. Kate Benson: Camille. >> Camille: Hi. Feels like kind 

1:15:19

of a silly question, but my communications  person at my office was reminding me to, 

1:15:28

you know, like get the date of the release  of the finalized document because it was her 

1:15:33

impression from the former person from MOD on the  Commission that we needed to share the document. 

1:15:40

So I guess I'm just clarifying. I don't know if  that's a need to and/or if that's something that 

1:15:47

maybe was just like encouraged to like share  the news, you know, put out more of like a 

1:15:53

news announcement that it's come out. So  I just wasn't sure if that was a okay, 

1:16:01

I see. Thank you for adding that to the chat. I  wanted to make sure I had the right understanding 

1:16:07

of thought. So I see that in the chat, thanks. >> Dr. Kate Benson: Yeah. So for folks who might   not be able to see the chat, some of the  language in the Commission legislation was 

1:16:16

also that the Massachusetts Office on Disability,  or MOD, shall make the report publicly available 

1:16:23

in an accessible format on the office's website.  That was the language in the bill and was written 

1:16:30

before the SCSI page on mass.gov was created. But  one of the things that Senator Barrett did mention 

1:16:39

repeatedly is ensuring that we are kind of selling  this report, that we're sharing it with people, 

1:16:47

we're talking about it, we are answering  questions and encouraging questions and 

1:16:55

starting conversations where we can because we  have to remember that there, again, there are 

1:17:03

a lot of people who don't have this knowledge  engrained in them and they are the ones that we 

1:17:09

really need to reach out to and help understand  why our recommendations are important and why 

1:17:14

our recommendations should be carried out. So the hope is that everyone here will be taking 

1:17:22

this report and talking about it and sharing it  and supporting it once it's out in the world.  

1:17:31

Any other questions about the publicizing of  the report and our recommendations? Okay.  

1:17:44

One of the other conversations that we've had a  couple of times is future oversight and advocacy 

1:17:50

for the implementation of the Special  Commission's recommendations. Obviously, 

1:17:55

if this Commission still exists, that's something  we continue working on. If we don't exist, 

1:18:02

we have to think about who do we hand these  recommendations off to? Who is ensuring that 

1:18:13

the recommendations are implemented? If by some  miracle we end up with money tied to any of our 

1:18:21

recommendations, who is supervising where  that money goes and what it accomplishes?  

1:18:29

So that's one of those things that there  may be lots of questions about and it 

1:18:36

depends on whether or not the Commission  is still driving the bus. Does anyone have 

1:18:43

thoughts, questions? Alex, go ahead. >> Alex: Just given what we heard from 

1:18:49

the Senator and representative, it sounds to me  but tell me if this is wrong, that we can really 

1:18:56

rely on the legislature to be the ones to lead  some of that accountability, especially through 

1:19:02

this period where we try to figure things out.  You know, they're deeply familiar with it. They   have the ability to have a hearing or to reach out  to folks and have conversations with them. And it 

1:19:12

sounds like they, they're deeply aware of our work  and understand what the goals and intent are.  

1:19:17

So maybe that's a natural way, rather  than trying to shoehorn this in to, 

1:19:22

you know, state employees have a lot of work  on their plate and so I don't want to say, hi, 

1:19:30

here's 24 recommendations to enforce, to folks. >> Dr. Kate Benson: Yeah. Absolutely. Lauri.  

1:19:40

>> Lauri: So who is the financial or  what entity or who is the financial 

1:19:48

oversight person right now? >> Dr. Kate Benson: That is a good 

1:19:54

question. Emily, I'll have you answer that one. >> Emily: Thank you. Yes. The legislative funds 

1:20:01

were distributed to the Department  of Developmental Services and the 

1:20:07

Department of Developmental Services issued an  interagency service agreement, which is a form of 

1:20:12

a contract to us here at UMass Medical School,  which they can do because we are also a state 

1:20:18

entity. So they are the ones who are managing  those funds and paying the bills as a conduit 

1:20:25

for the Special Commission currently through the  executive Offices of Health and Human Services.  

1:20:32

>> Lauri: One more follow up question about  that. So are all of the current allocated 

1:20:41

funds only being spent on CDDER? >> Emily: That's correct. So there was 

1:20:49

$145,000 awarded for the Commission and  that money started to be used when the 

1:20:57

Commission chose CDDER as the administrative  supporters of the Commission. And that covered 

1:21:04

roughly a year and a half of support. >> Lauri: Okay. So is it a fair idea that 

1:21:14

moving forward let's say this happens and then  there's funding that that would continue?  

1:21:21

>> Emily: So that is an option, as the senator and  representative said. There are different ways to 

1:21:27

earmark the funds. So the funds, you could ask the  for the funds to come to the Special Commission, 

1:21:34

but that would have to come through some sort  of state entity, like it did with DDS. You can, 

1:21:40

if you choose, ask for the funds to come  directly to UMass Chan Medical School and 

1:21:45

CDDER to support you all, if it that is what  you would choose to continue and we could do a 

1:21:52

scope of work associated with that. So there  are multiple different ways that you could   ask for legislative funds to be distributed. >> Lauri: And just one more point. So currently, 

1:22:04

the Department of Developmental Services kind of  virtually holds that money and then I assume that 

1:22:11

within CDDER, there's some sort of bill reimburse,  bill, reimburse, bill, reimburse, you know, as the 

1:22:20

months go on, something to that effect. That's  how a lot of RFRs work within the department.  

1:22:26

So that to me would mean that CDDER would then  have to do some kind of annual accounting or 

1:22:35

summary of how the funds have been spent to  date as an obligation to the Department.  

1:22:43

>> Emily: Thank you, Lauri. So we do invoice our  actual costs every month to the Department and 

1:22:54

they get an accounting of what we've spent  and then they reimburse us for our costs. 

1:23:06

So we don't need to do an annual report but they  do get transparency on each of the invoices about   what we're spending and how we're spending it. >> Lauri: Just one last point. So I think that   maybe, maybe that the Department  probably holds a summary of that 

1:23:15

money for internal auditing themselves.  We got this pocket of money allocated, 

1:23:23

here's how we spent it, contracted  with CDDER, money's been spent.  

1:23:28

So in some ways, the accountability right now  actually sounds like it's falling with DDS because 

1:23:37

they're the fiscal intermediary. Right isn't  CDDER is the recipient of the funds for the tasks, 

1:23:46

but the fiscal intermediary is Department of  Developmental Services, and I would just make a 

1:23:52

little pitch there that, you know, an idea moving  forward would be to maybe let that be a continued 

1:24:02

relationship, if nobody has any other objections,  because in a way they're then responsible for any 

1:24:09

kind of accounting or auditing about it and  it takes a, it takes a lot of responsibility 

1:24:14

off of the Commission, if you will. >> Emily: Thanks, Lauri. I want to clarify. I 

1:24:22

don't think the Commission currently has a way to  directly receive the funds. It has to come through 

1:24:27

an agency and that's why DDS was selected. >> Lauri: Right. Sorry.   >> Emily: They're the administrator  of the funds, just to clarify.  

1:24:38

>> Dr. Kate Benson: Alex, go ahead. >> Alex: Lauri, you're right, that helped   streamline things when we got things off the  ground because CDDER has preexisting relationship 

1:24:49

with the state and the whole contract and all of  that, certainly this arrangement we have had has 

1:24:58

made it incredibly easy for us as a Commission  to operate and focus on the work at hand without 

1:25:07

having to focus on areas where, as you've  heard me say too many times in today's meeting, 

1:25:12

I should not be trusted involving  numbers over ten, let's say.  

1:25:17

>> Dr. Kate Benson: And for those who don't  see kind of what goes on behind the scenes, 

1:25:25

CDDER does, I would say, conservatively 90%  of the heavy lifting and the majority of 

1:25:33

what we've accomplished, especially when  it came to the research end of things, 

1:25:39

agency communications, down to just creating the  slide shows, none of that would have been possible 

1:25:46

without CDDER in partnership with us. Honestly,  so much of this, I mean Alex and I would have just 

1:25:57

gone all over the place talking about, I don't  know, two years straight. Like Alex, I should 

1:26:08

not be trusted with numbers over ten either. So it is something that we will talk about as 

1:26:16

a Commission if we make the decision that we are  going to continue to exist. As Emily said, there's 

1:26:24

the opportunity to have CDDER help us bridge that  process. Again, you heard the to do list that 

1:26:30

Senator Barrett kind of shot out at us. That's  a lot of work, and it's a lot of work to do on 

1:26:37

our own. And we frankly don't have the knowledge,  the understanding, the connections that CDDER has 

1:26:45

that they can support us with in that process. So I hope that helps answer your question, 

1:26:54

Lauri it's a long winded >> Lauri: Yeah. I was just trying 

1:27:00

to follow the money. I didn't really have a  question about why it's structured that way, 

1:27:06

I just didn't know, so I was asking. But I do have another question. Maybe I'm a little 

1:27:14

lost because it's 4:36 and I'm starting to go  brain tired. These are open items we're discussing 

1:27:22

right now. I see that we really only kind of not  covered all of these bullets. Should we prioritize 

1:27:30

with the time we have left at least one of these  bullets? Because I'm thinking we probably should 

1:27:35

get to the potential continuation of the Special  Commission question on this open item first, 

1:27:42

because everything after that comes under that. >> Dr. Kate Benson: We actually touched that we 

1:27:49

are on the last bullet about Foxboro cemetery.  I think what we're going to do, Lauri, is rather 

1:28:06

than having people say yes, we'd like to continue  the Commission, no, we wouldn't, right here, that   we're going to do some sort of follow up, like  official follow up so that folks can share their   feelings about continuing  the Special Commission.   I don't think we intended to make that  decision tonight. Is that correct, Alex?  

1:28:14

>> Alex: Yeah. And to be more specific, I don't  think it's about continuing the Commission because   I don't think we actually have that ability  or plan in place to sunset it, but continuing 

1:28:23

people's role in service to the Commission. So do  people who are currently serving on the Commission 

1:28:29

want to continue serving on the Commission,  and that seems to be something that we can that 

1:28:38

seems to be something we can do by e mail. But I don't think that there's nothing here   that I'm seeing in the statutory language that  says that we have to take any action whatsoever. 

1:28:49

The Commission simply continues, whether it has  delivered the report or not. It has to deliver 

1:28:57

the report, but I don't see any contingent  language that says that when it delivers 

1:29:03

the report the Commission ceases to exist. Now, we probably should take a vote on whether 

1:29:11

or not we want to enable CDDER to work with us to,  and for us in general, to seek more funding. That 

1:29:21

probably does need enactment by the Commission  before we close today, just to say like even if 

1:29:27

you personally do not want to continue to serve  on this, do you think that it is a good idea to   pursue obtaining funds to continue the Commission  in some form or another and get support for it 

1:29:41

through an organization like CDDER, or CDDER.  And I think we can just continue that without 

1:29:47

a bidding process, probably given the existing  relationships, but I don't want to speak to that 

1:29:52

because I don't know how the budgeting works. >> Dr. Kate Benson: I know, Jim, I saw your 

1:29:57

hand up and Andrew has his hand up and then  maybe we can return to what you were saying,   Alex, about voting whether or not we  want to continue that relationship.  

1:30:06

Jim, go ahead. >> Jim: Actually, I think Alex kind of addressed 

1:30:11

what I was going to raise. But I think is there's  clearly work to be done. There's clearly work 

1:30:19

that the Commission is the right forum to do it  where we are right now, in my judgment. And the 

1:30:33

support of CDDER, so I would support voting on  requesting continuation of CDDER's support.  

1:30:44

>> Dr. Kate Benson: Excellent. I'm going to  come back to you when we head for that vote.  

1:30:49

Andrew, you had your hand up as well. >> Andrew: Yes. Andrew Levrault. The only, 

1:30:55

I guess, issue that I see is if you look at the  special, excuse me, if you look at the board's 

1:31:00

and Commission's website all of our terms are  sunsetted as of June 1, 2025, so it seems like 

1:31:07

at least they might be believing the Commission is  over June 1, 2025. So we might want to reach out 

1:31:13

to them to clarify what their understanding  of the continuation of the Commission is.  

1:31:19

>> Dr. Kate Benson:  Absolutely. Thank you. Okay.  

1:31:24

So we have a lot of, a lot of information to  kind of handle and digest. So the question on 

1:31:33

the table is, do we have a motion to continue our  relationship with CDDER or an agency like CDDER 

1:31:43

in order to help us potentially gain funding for  the Commission to continue? Do I have a motion?  

1:31:51

>> Anne Fracht: I'll make the motion. >> Dr. Kate Benson: Thank you,   Anne. Do I have a second. >> Jim: This is Jim. I'll second.  

1:31:58

>> Dr. Kate Benson: All right.  And can we have CDDER read the   names for a roll call vote please. >> Sure, this is Christine from CDDER 

1:32:06

and once again I'll be reading out members' names  alphabetically by your last name. When your name 

1:32:11

is called please respond with yes, no, present  or abstain. Beginning with he will Elise Aronne. 

1:32:19

Kate Benson. >> Yes.   >> Sister Linda Bessom. Reggie Clark. >> Reggie: Yes.  

1:32:28

>> Thank you, Reggie. James Cooney. >> James: Yes.   >> Samuel Edwards. >> Samuel: Yes.  

1:32:35

>> Anne Fracht. >> Anne Fracht: Yes.   >> Alex Green. >> Alex: Yes.  

1:32:40

>> Bill Henning. Camille Karabaich. >> Bill: Yes.  

1:32:46

>> Andrew Levrault. >> Andrew: Yes.   >> Evelyn Mateo. >> Evelyn: Yes.  

1:32:52

>> Lauri Mederios. >> Laurie: Yes.   >> Vesper Moore. Vesper Moore? All right. And  Brenda Rankin, which I don't believe is here. Did 

1:33:07

I miss anyone? Okay. I think we're all set. >> Dr. Kate Benson: Thank you. So the motion 

1:33:13

is passed that we will continue our ceilings  ship either with CDDER or an agency like it 

1:33:18

in order to potentially secure funds for the  continuation of the Commission. And that brings 

1:33:23

us to our last bullet because this is one of the  things that we would look forward to as a future 

1:33:30

endeavor for the Commission with the support of  CDDER. CDDER gained support from DMH to access 

1:33:38

the records for the Foxboro cemetery, the  Foxboro cemetery was one of the ones that 

1:33:44

will need some major reconstruction of  the population buried in that cemetery, 

1:33:51

and CDDER did a great deal of legwork to make  sure that we would have an opportunity to re 

1:33:57

assemble that particular burial ground  and identify those who are buried there, 

1:34:04

as that is one of the cemeteries that is currently  not appropriately memorialized. So that is one 

1:34:10

of the things that will be on our list to  continue as a Commission if we choose to.  

1:34:19

Does anyone have questions about that one?  That one is pretty straightforward and   very excite -- I don't know if exciting is the  right word, but you all know what I mean. It's 

1:34:28

incredible to think about that being perhaps the  first cemetery that we have a major impact on.  

1:34:46

Okay. If there are no questions on that  point, I'm going to turn it over to Anne.  

1:34:52

>> Anne Fracht: Thank you, everybody. If there's  no other items to discuss, can we vote to adjourn 

1:35:03

the meeting? If everybody [interruption] >> Dr. Kate Benson: 

1:35:13

Reggie, was that you? >> Reggie: Yes.   >> Dr. Kate Benson: Go ahead. >> Anne Fracht: Do we have a motion 

1:35:29

to adjourn the meeting? >> Reggie: Yes.  

1:35:34

>> Anne Fracht: Thank you,  Reggie. Do we have a second?   >> This is Jim. I move that I second. >> Anne Fracht: Thank you.  

1:35:46

>> Christine: All right. Thank you, Anne. This is  Christine Roa again from CDDER and once again I'll   be reading out your names by alphabetical order  by your last names. Please respond with yes, no, 

1:35:56

present or abstain. Elise Aronne. Kate Benson. >> Yes.  

1:36:03

>> Sister Linda Bessom. Reggie Clark. >> Reggie: Yes.  

1:36:09

>> Thank you. James Cooney. >> James: Yes.   >> Samuel Edwards. >> Samuel: Yes.  

1:36:16

>> Anne Fracht. >> Anne Fracht: Yes.   >> Alex Green. >> Alex: Yes.   >> Bill Henning. Camille Karabaich. >> Camille: Yes.  

1:36:26

>> Andrew Levrault. >> Andrew: Yes.   >> Andrew Levrault. >> Andrew: Yes.  

1:36:31

>> Evelyn Mateo. >> Yes.   >> Evelyn Mateo. Lauri Mederios. >> Laurie: Yes.  

1:36:45

>> Evelyn, sorry. >> Evelyn: Yes.   >> Okay. Thank you. Vesper Moore. >> Vesper: Yes.  

1:36:52

>> Wonderful. And Brenda Rankin, which  is not here. I think we're all set.  

1:37:00

>> Anne Fracht: That you, everybody.  The meeting is adjourned. And it's   been a pleasure to work with everybody. >> Dr. Kate Benson: Thank you, everyone, 

1:37:09

so much for everything. And hopefully this  is not good bye, it's see you soon.  

1:37:15

>> Thank you. >> Thank you, all. Take care.   >> Thank you. >> Thank you.  

1:37:21

>> Bye now. >> Bye.