transcript

transcript  SCSI March 2025 Presentation


(Recording in progress.) >> Kate: All right we would like 

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to call this institution on special institutions  to order. My name is Kate Benson and I'm one of 

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the commissions two cochairs. As usual before  we begin, we'd like to let everyone know that 

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this meeting must follow the open meeting law.  Any votes will be done via a roll call vote. 

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We ask that commission members please mute  themselves when not speaking and use the raise 

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hand feature if they would like to speak. Before  speaking, please state your name so everyone 

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knows who is talking. Any questions posted from  the audience in the Q and A for this meeting, 

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

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is scheduled for two hours. We will have a break  midway through the meeting, at about 4 o'clock. To 

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make sure everyone can participate we ask the  following. We have CART services supporting 

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our meeting today. These are captions that help  people follow the discussion. If you need help 

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turning on these captions, please let us know.  We ask that people speak at a non rushed pace 

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and provide 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 

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these items just mentioned, if needed during  the meeting, and to keep us on track. When 

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we end this meeting, we will have notes made  available based on what we talk about today. 

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This meeting is also recorded and the videos on  the commission’s mass.gov page and on YouTube.  

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Next slide, please. Ok.  

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We hope everyone has taken a moment to view the  agenda. These are the items we will be discussing 

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today. We have some announcements. CDDER will  provide a recap of the last meeting. After we vote 

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to approve last month’s meeting minutes, we will  have another discussion of the vice chair role. 

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We also will discuss the schedule for upcoming  meetings. The bulk of the meeting will be a 

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discussion about what we want to recommend  for the framework for remembrance. Then we   will discuss any next steps and then wrap  up the meeting with a vote to adjourn.  

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Next slide, please. We wanted to welcome Camille, 

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and I am going to apologize for the pronunciation  of Camille’s last name, Karabaich, who is the new 

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representative from the Mass Office on Disability.  Welcome, Camille, and I don't know if Camille is 

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with us today. Is she Jen? >> Jen: I don't see her name.  

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>> Kate: Okay. I don't either. So  next time that Camille joins us, 

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we will have her introduce herself. We also wanted  to announce that Matt Millett has decided to step 

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down from the special commission due to personal  reasons. We want to thank Matt for chairing this 

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commission over the last two years. I’d  like to ask Victor Hernandez from the DDS   to give us an update on the DDS commissioner's  appointment of a new designee for this role.  

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Victor? >> Victor: Yes. Thank you and   thank you for allowing me to speak. We are very  pleased DDS to hear that our very own Anne Fracht 

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has expressed an interest in being the co-chair,  representing DDS. I spoke with the commissioner 

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about this and she herself too is very excited. We  all know have known Anne for many years, for her 

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advocacy and for her commitment to folks served  by the department, and value her thoughts and 

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her willingness to always speak up for the  right thing. That's from different committees 

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she's been on. Most recently with the self  determination advisory board. She's always 

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spot on as Anne is on her comments and always  her willingness to share them with folks. So 

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DDS is thrilled and excited and pleased to  have Anne representing us on this committee.  

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>> Kate: All right. Thank you so  much, Victor. And thank you, Anne,   I'm very excited that you're stepping into this  role. We would now like to invite Emily from 

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CDDER to provide a high-level recap of our last  meeting before we vote to approve the minutes.  

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Emily? >> Emily: Thank you,   Kate. So the last meeting, the commission  members reviewed the purpose of the this special 

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commission. They specifically reviewed the  purpose of a summary report that will be made 

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and who it is for. They talked about the types  of things that can be said in a summary report. 

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They discussed how the report will be created, and  they talked about details like the writing style 

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of the report, the use of plain language, and how  they would talk about people with disabilities.  

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They spent the rest of the meeting  talking about different areas of   focus and potential recommendations that  the committee could make in their summary 

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report. Back to you, Kate. Thank you. >> Kate: Thank you, Emily. Before we dive 

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into this afternoon's discussion, we have our  vote on the minutes from the commission's last   meeting in February. Draft copies of the meeting  minutes were e-mailed earlier this week. Do any 

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members have any suggested changes to the minutes?  Any suggestions on last month's minutes? Okay.  

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If not we can proceed with the vote. As  usual we will conduct a roll call vote. 

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But before CDDER reads out everyone’s  names do we have a motion to approve   the minutes from the last meeting? Please  remember to state your name before speaking. 

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Do we have a motion to approve the minutes? >> Alex: This is Alex I make a   motion to approve the minutes. >> Kate: Thank you, Alex, do we have a 

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second? I see Bill's hand up. Bill is seconding  the acceptance and approval of last month's 

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minutes. And we will now take a roll call vote. >> Jen: Thanks, Kate, this is Jen Fuglestad from 

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CDDER and I will now read out each  member’s name in alphabetical order, 

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by your last name. When your name is called,  please respond with yes, no, present, or abstain. 

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Start with Elise Aronne? >> Elise: Present.  

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>> didn't happen. >> Jen: Kate Benson.   >> Kate: Yes. >> Jen: Sister Linda Bessom?  

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>> Jen: Reggie Clarke? >> Jen: Reggie Clarke? Do 

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you approve the minutes? >> Jen: James Cooney?  

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>> James: Yes. >>Jen: Samuel Edwards?   >> Samuel: Yes. >> Jen: Anne Fracht?   >> Anne: Yes. >> Jen: Alex Green?  

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>> Alex: Yes. >> Jen: Bill Henning.   >> Bill: Yes. >> Jen: Camille Karabaich?  

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>> Jen: Andrew Levrault? >> Jen: Evelyn Mateo?  

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>> Jen: Lauri Medeiros? >> Jen: Vesper Moore?  

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>> Vesper: Yes. >> Jen: And Brenda Rankin?   >> Brenda: () >> Elise: Are you voting yes or no.  

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>> Brenda: Yeah. >> Jen: Thank you, Brenda. Did I miss anyone?  

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>> Kate: Thank you, everyone. The minutes  are approved. As a reminder, copies of the 

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approved minutes, and all the materials from  our commission meetings are available on the 

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commission's Web site. Next slide, please.  

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At the November meeting, the special commission  voted to approve the role of vice chair. The 

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vice-chair role is still vacant and at this  time the commission is in need of that role 

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being filled. The vice chair would be a helpful  role as the vice-chair could step in, if I, 

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or Anne, or both of us were not available. The  vice chair could also help by working with the 

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co-chairs regularly and reaching out to members  before meetings to make sure everyone attends. 

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I wanted to open this up for discussion. Are  there any members of the special commission who   would like to step into this leadership role? >> Alex: This is Alex. How many months have we got 

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on our sort of formal mandate left? >> Kate: Just under three months.  

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>> Alex: Okay. >> Kate: I believe.   >> Alex: So somewhere between 3 and 5 meetings. >> Kate: Correct if my math is correct, 

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which it may not be. Is there anyone  who is interested in this position?  

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>> Alex: Since it's short term, I would  consider it if it would help just on the 

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end with you and Anne. I don't know what  that does in terms of a secretary role, 

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but if it helps in case we're just short on  quorum or folks are traveling, or anything 

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else going on, I'd do it for a few months. >> Kate: Thank you, Alex. Is there anyone else 

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interested in this role? And it is relatively  short term, but it would help immensely as there 

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will be a couple of, well at least one date where  Anne and I may not be available. Okay. That leaves 

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Alex. Do we have a motion to install Alex as vice  chair? I see Bill's hand. Bill is making a motion 

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for Alex to be installed as vice chair. >> Bill: Sure.   >> Kate: Do we have a second? >> Reggie: I second.  

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>> Kate: Thank you, Reggie. Alright, we will  take a roll call vote to make it official.  

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>> Jen: Okay. Everybody, thank you. This is  Jennifer from CDDER and I will now read out 

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your names by alphabetical order. When your  name is called, please respond with yes, no, 

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present, or abstain. >> Jen: Elise Aronne?  

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>> Jen: Kate Benson? >> Kate: Yes.   >> Jen: Sister Linda Benson? >> Jen: Reggie Clarke?  

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>> Reggie: Yes. >> Jen: Thank you, Reggie.   >> Jen: James Cooney? >> James: Yes.  

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>> Jen: Samuel Edwards? >> Samuel: Yes.   >> Jen: Anne Fracht? Anne, Anne Fracht? >> Anne: Yes, yes.  

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>> Jen: Alex Green? >> Alex: I'll abstain on it.   (Laughter.) >> Jen: Bill Henning?  

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>> Bill: As long as Kate Benson isn't  intimidated by the vice chair, I approve.  

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(Laughter.) >> Kate: Not even close.   >> Alex: It's the other way, it's the other way. >> Bill: I assumed.  

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(Laughter.) >> Jen: Camille Karabaich?   >> Jen: Andrew Levrault? >> Jen: Evelyn Mateo?  

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>> Jen: Lauri Medeiros? >> Jen: Vesper Moore?  

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>> Vesper: Yes. >> Jen: Thank you.   >> Jen: And Brenda Rankin? >> Brenda: ()  

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>> Elise: Yes to vote or not to vote. >> Brenda: Yes.   >> Jen: Thank you, Brenda. And it  looks like that motion was approved.  

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>> Kate: All right. Next slide,  please. You're stuck now Alex.  

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(Laughter.) >> Okay. The first item   that we wanted to discuss is the open meeting law.  The temporary rules to allow virtual meetings that 

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was put in place during COVID ends on March 31st  of 2025 which is coming up quick. We don't know 

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at this time if those rules will be extended or if  there will be new allowances for virtual or hybrid 

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meetings after March 31st. We wanted to let you  know now as we may need to adjust our plans for 

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the next meeting depending on what the decision  is. The next item we want to discuss is the April 

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10th meeting. We know some commission members have  scheduling conflicts and won't be able to attend. 

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We need to have nine members to make quorum or  the meeting will need to be rescheduled. Can 

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I get a sense on any commissioners that will  not be present on the 10th? I am one of them. 

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Is there anyone else who cannot be present  on April 10th? Anne were you one of those 

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individuals that couldn't do April 10th? >> Anne: I changed plans. I'll be here.  

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>> Kate: Okay. Perfect. All right. So it's just  me throwing a wrench in the works. Okay. So do 

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the question now is do we want to identify the new  date for the meeting, or do we want to still hold 

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the meeting with Anne and Alex? Alex, go ahead. >> Alex: This is Alex. On the temporary 

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rules thing. >> Kate: Mm hmm.   >> Alex: So forgive me if I'm being dense, does  this mean that after the 31st right now, we’d have 

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to meet in person instead of meeting online unless  someone changes those rules or what's the yeah, 

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what's the sort of landscape there? >> Kate: Emily?   >> Emily: Thank you. Yes, that's correct Alex,  the ability to meet online for open meetings is 

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granted under that special permission which  was time limited. My understanding is that 

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there are discussions happening about potentially  extending that rule, but we have not seen approval 

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coming forward. And this will not only affect your  commission but any commission in Massachusetts.  

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>> Alex: Got it. Thank you so much. >> Samuel: Two thoughts on this which I don't 

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know if anyone knows the answer to but one thought  is do we have a sense of where we would meet if we 

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were to meet in person? And the second thought  is, is there a potential to get an exception 

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granted because of the nature of our work? Like  I feel like having it not at least have a hybrid 

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option gives an accessibility issue? >> Kate: Yes, absolutely. Katie?  

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>> Katie: Hi, Reggie has a question. >> Reggie: Oh. Okay.   >> Reggie: I have a question, if I was  going to go there, I don't know if I’m 

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going to have anybody to come and get me. I have a  situation where people are working during the day, 

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so I don't know what to do. >> Kate: I think that's going   to be one of our >> Reggie ( ).   >> Kate: Sorry Reggie. >> Reggie: I have a situation that I 

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can't get there on my own unless unless someone  either takes me or tells me what to do. So you 

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got to come up with that situation please. >> Kate: Yeah. That's going to be our biggest   issue, Reggie, is the accessibility piece  for some of our members and of course one 

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of your co-chairs lives in the middle of  nowhere in western mass. So, uh, Bill?  

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>> Reggie: Well, if I had to come up where  you are Kate, I would take a bus fare.  

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(Laughter) >> Kate: Thank you, Reggie, I appreciate that,   you can come hang out in western mass with me. >> Bill: I don't think anyone knows what the 

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Mass General court will do, but if I have to  bet, I’d bet they continue this. There's lots 

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of legislation just as FYI even BCIL is very  active on try to make this permanent. It never 

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passes because there's opposition from the mass  municipal association, all the cities and towns, 

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et cetera. However, if you go up the state,  you'll find many legislators on hearings and 

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public meetings love the virtual aspect. I cannot  imagine leadership of state government trying to 

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go back to the old days. Any meetings  like the everything is done virtual, 

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even if you want to say meet in person. But that's  a two sense opinion on March 13th. I'd wager a 

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dollar with anybody if you're interested. >> Kate: And we’re really hoping that Bill is   right with that statement. >> Bill: Yeah.  

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>> Kate: Obviously being able to have  these meetings via Zoom changes the 

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landscape for participation and a great  deal of things. Not just commissions 

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like this but, you know, and many other >> Bill: I think state government has a higher   rate of work from home than private business  at this point. It would be a radical shift.  

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>> Kate: Absolutely. Absolutely.  Thank you, Bill. Alex?   >> Alex: Just a thought and it doesn't  have to be the case but as a contingency, 

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it sounds like Bill, what you're saying is  unlikely to happen, but just in case, can we 

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is it worth thinking of looking at a date later  in the month in case they don't get it together 

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right on the line or something and it straggles  a little bit pass the end of the month or just so 

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we can plan in advance? If I have a few weeks  to plan, Reggie, I can drive out and get you, 

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I just have to know a few weeks out before  that were to happen. But I don't know. 

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Like I yeah. It's a thought. I'm not sure. >> Kate: I think, Alex, piggybacking on what you 

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just said, if there was a potential for scheduling  it later in April during the school break, 

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then I also could be in person without issue  we would just have to figure out, as we said, 

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all the rest of the accessibility  issues for this group. Emily?  

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>> Emily: There are some provisions in the  law that allow for remote participation as 

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an accommodation. There's two we would need to  explore a little bit further and we can support 

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you in doing that. One option maybe that we hold a  physical presence but that we permit by exception 

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remote participation by members that cannot make  it. We may also want to take a vote. We have to 

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clarify whether this would be binding, but you  could take a vote to hold your next meeting 

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remotely in the event that that vote would permit  that. I think there is potentially some ground for 

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that as local for example, local commissions  on disability can do that. So you may want 

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to try to get agreement that you would like  to host the next meeting remotely and we can 

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help you figure out if that is sufficient. >> Kate: Okay. I think that that is probably 

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the best for all involved. All right. Do we have a  motion to hold the next meeting virtually in order 

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to allow access for everyone? >> Anne: Make the motion.  

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>> Kate: Thank you, Anne. Anne makes the  motion. Do we have a second for holding the   meeting virtually next time? >> Reggie: I second.  

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>> Kate: Thank you, Reggie. >> Reggie: This is Reggie.  

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>> Kate: Okay, so is this one do  we need to do a roll call vote   for this one? Yes. Okay, excellent. >> Jen: Okay thank you, Kate. This is 

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Jennifer again. And I will read out members  names. Alphabetical by your last name. When 

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your name is calmed, please respond with  yes, no, present or abstain. Elise? Kate?  

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>> Kate: Yes. >> Jen: Sister   Linda? Reggie? >> Reggie: Yes.  

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>> Jen: James Cooney? >> James: Yes.   >> Jen: Samuel Edwards? >> Samuel: Yes.  

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>> Jen: Anne Fracht? >> Anne: Yes.  

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>> Jen: Alex Green? >> Alex: Yes.   >> Jen: Bill Henning? >> 

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Bill: (Nods.) >> Jen: Camille Karabaich? Andrew Levrault? 

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Evelyn Mateo? Lauri Medeiros? Vesper Moore? >> Vesper: Yes.  

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>> Jen: And Brenda Rankin? >> Brenda: I'm here.   >> Elise: Are you voting yes for a virtual  meeting or no for a virtual meeting? 

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Like we have right now. >> Brenda: No.   >> Elise: No. Okay. >> Jen: Thank you, Brenda.  

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>> Kate: Okay. All right, thank you  everyone. Next slide, please.  

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>> Kate: All right. Now we'd like to discuss  the recommendations that the working group 

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identified. And I'd like to suggest the following  process. We will present each recommendation and 

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then open the floor for discussion. After the  discussion, the commission could vote to include 

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the recommendation in the final report. If after  the discussion, the commission decides that the 

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recommendation needs work, the commission could  send the recommendation back to the working group 

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for revisions before bringing it back for a vote. So, the first proposed recommendation 

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is a disability history museum. The first  recommendation that the working group 

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came up with is to create a museum of some sort  dedicated to preserving the history of residents 

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from state institutions. The museum would also  highlight the independent living movement, 

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the process of deinstitutionalization, and  the ongoing efforts to integrate people with 

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disabilities into society. It would be a key  resource hub, offering links to records and 

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information for former patients and their families  who are looking for their historical records. 

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Whether it's a physical or a digital space, the  goal would be to make it easily accessible to 

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everyone. I’d like to open up the floor for  discussion on this first recommendation.  

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Does anyone have any thoughts, considerations,  ideas on this particular recommendation? 

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Even if it's just to say,   yep we love it. Bill go ahead. >> Bill: Yeah we love it. I mean 

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it's ambitious for sure. I think preserving  the history is great. I think intertwining it 

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to make it contemporary, too. So is talking about  an independent living disability rights movement 

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which is never going away, for sure. And in  current days, it's probably more needed than it's 

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been the last few decades. I think those things  are great. Again, it's easier said than done.  

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>> Kate: Absolutely. >> Bill: But you know you   can start with I mean Alex, you can always  turn to Alex too since he does everything, 

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but I know there's lots of digital stuff out  there. I'm not a digital maven, I like going 

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in a real museum which sounds a lot harder than  putting something digitally, but one can lead to 

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the other, I don’t know. So, go get ‘em. >> Kate: Absolutely, and it's important to   remember too, that these are just recommendations.  This is a first step in us and encouraging others 

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to think about what this looks like  and what the steps are to get there.   >> Bill: I can >> Bill: I can tell you an anecdote I was taking 

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my kids when they were little through the American  museum of history at the Smithsonian and they had 

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a temporary exhibit on disability rights and it  featured some of the people I had worked with on 

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Cape Cod and Cord and some of our ADA work and you  would have no idea what that was like and to have 

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forgotten people out there and their families  and everything, it's just would be powerful.  

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>> Kate: Absolutely. Thank you, Bill. Alex? >> Alex: Thank you for the voluntold, Bill. I 

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actually – so I like all the points,  like to preserve history institutions,   the independent living, the institutionalization,  the hub of information. I would love to know what 

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people think about this, this idea of physical  or digital. I'm very undecided on it. Teaching 

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it seems like my students are all on their devices  and I can see real benefits to that. At the same 

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time, I'm with you, Bill, on the old school end.  There’s something about just being in a museum 

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space that feels really good but don't really  actually have a scope of that. So, I just sort of 

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I'd love to hear thoughts on that from folks. >> Kate: I think the best word for the scope,   Alex, is monumental? (Laughter)  

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>> Kate: Sam. >> Sam: I think I see pros and cons for both. 

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I think for some folks, a physical space is more  accessible. I think some folks a digital space   is more accessible. So, I see pros and cons for  both. My one con about a physical space would be 

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like what would the collaboration between the  museum and the archives be because I think that 

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is a question because it presumably some records  would not want to be displayed and things like 

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that so what is the relationship between museum  staff and archive staff I think is a question. Or 

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maybe not at that point yet or maybe just making  a recommendation. But it's something I flag of oh 

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what would happen with that if that's the case and  I want those two things talking to each other.   >> Kate: Sam, I'm going to wait for a day  you're working and clean out my attic and 

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bring it to you. (Laughter)   >> Sam: Great. I look forward to it. >> Kate: Perfect. Vesper.  

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(Laughter.) >> Vesper: I think   there's benefits in both kind of like Samuel was  saying, and I think I'm part of another group part 

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of the Smithsonian and on average some of these  museums, part of what extent is needed and you 

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need the right temperature or the right lighting  for certain artifacts and materials. It take it is 

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a long time. So I've heard, it can be an upwards  of 35 years to get a large museum like that going. 

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But I mean it really depends, I think if we wanted  physical space and wanted to cut downtime on that, 

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it could be a gallery, like a historical gallery  of some type, you know, with meeting some other 

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requirements. But I do think there does need to  be a digital element for it to be successful. 

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So that's kind of my $0.02' there. >> Kate: Thank you. I like that historical 

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gallery idea as well. Bill, go ahead. >> Bill: Yeah, just to I'm very much tangible, 

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not a digital person but the relevance of it  to add something. And I didn't know about this 

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until last night. But American experience will be  coming out with something on ADA35 I believe in 

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April and they're drawing on the digital  archive, the disability museum of adapt, 

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among others. So some of my colleagues were  sharing that last night. So the practical 

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application of something digital to go into a much  broader audience was exhibited to me last night. 

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Not really connected to this. But, you know,  both mediums if possible is great. But digital 

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certainly in this age has lots of validity. >> Kate: Absolutely. I think ideal world would be 

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being able to make both happen. Any other thoughts  on this particular recommendation? Alex?  

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>> Alex: I'm thinking about with the  report, if we say something like this, 

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it sounds like folks broadly like this idea. I  imagine that the question of readers of report, 

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various places like that, their question is going  to be, okay, how? Or what's the first step? So I'm 

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curious about that idea. Maybe it goes back to  what you were saying, Sam, about making sure the 

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right people are involved early on. Is the right  recommendation like a group of people somehow come 

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up with a feasibility thing put forward in a  certain period of time. What's a recommended 

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good process step in your experience that take  your idea and start to put it into action?  

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>> Kate: Yeah, thank you, Alex. I think the  idea recommending some feasibility studies. 

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It's the first step we took with the school  property and with the property of our museum. 

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I think looking at that figure out what the real  true first step is. After you have the group of 

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people and the thought of where is it going, then  we can say, okay, here's the actual first step. 

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Which we all know is money. Kidding (Laughter.)  

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>> Kate: Any other thoughts on the museum  recommendation? A point that I wanted to 

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raise personally is whether or not we continue  to use the word museum. Very often we have 

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talked in I think in hearing Sam talk in our  last smaller group meeting about the fact that 

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maybe what we're creating is what we're suggesting  is more an education hub, education network. Is it 

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a museum? Are we talking about I don't know how  to put this in English, but I'm going to say are 

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we talking about "museuming" individuals  with disabilities or are we talking about 

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keeping it out of a stat sick way of looking at  disability, history, advocacy, and the future? 

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That's my $0.02' to throw out there. Vesper? >> Vesper: Yeah, I agree. I think in a lot of 

35:04

conversations I've been in about museums,  there's often a leaning towards of an 

35:10

educational center to keeping it active.  And I mean I'm thinking of the Ed Roberts 

35:17

center. It's an accessible center. It has the  space is. It has historical gallery space.  

35:26

>> Kate: Mm hmm. >> Vesper: But it has   contemporary use and maybe that's something  similar that we do. And it's great. That's on 

35:33

the west coast. What do we have here on the east  coast. That would be a great a great way to think 

35:40

about. You have some of the oldest institutions in  the country here in Massachusetts. So I feel like 

35:47

we do have a charge to do something with this. >> Yeah. Thank you Vesper. I like that term 

35:54

contemporary use. Museum feels like one moment  in time whereas I think some of the other words 

36:06

that have been used by you Vesper, by Sam,  by Alex and by others, make it more like an 

36:12

active ongoing feeling. But that's kind of a  language piece that we can think about later.  

36:26

We have time if anyone has any other  thoughts, ideas, concerns about this 

36:33

particular recommendation? Alex go ahead. >> Alex: One thing we could do is I could try 

36:51

to draft some very simple bill language. You know  a lot of commissions that issue reports in the 

37:02

appendix, they'll include like draft language  just to help anyone in it that might be useful 

37:09

so drafting a funding or wreck session for  a budgetary item or some sort of legislative 

37:16

action but gives something to go off of. Does that  seem like a reasonable step. I mean it's edited to 

37:26

high heaven by everyone but as a stub for it. >> Any thoughts on it? I see Sam nodding.  

37:37

>> Yeah I like the it idea of thinking  of a feasibility study and looping in 

37:46

different folks. I think one concern I have  is just like like okay, if archives has all 

37:57

the records, there's a separate entity that's a  museum. How do things get to point A and point B? 

38:04

What's the preservation concerns. All  of these are like a huge question that 

38:11

I think would need to be like worked out. >> And I think that's probably the most daunting 

38:23

part of the conversation. Alex, go ahead. >> Alex: So Sam if you were to not on the spot 

38:34

now, but over the next week or so, would  you if I worked on language around like a 

38:41

fees want study and just getting that kind  of baseline in place but I left blank like 

38:47

who is who is in that group of people who  we suggest to do that feasibility study, 

38:53

like a committee of three or committee of five, is  that something you would feel comfortable to draft 

38:59

in what stakeholders need to be part of it? >> Sam: I think that it is easier for me 

39:13

repository than a physical museum. I think that  has a lot more different stakeholders that would 

39:20

be concerned about that at archives. I think that  a virtual thing. I'm thinking of something like 

39:28

in the vein of digital transgender archive that  a repository that assembles stuff from a lot of 

39:36

places, right? But don't physically have any  collections. That I think is something that 

39:43

I think can more see how that would like work  right now. I think with when you deal with, 

39:55

you know it's one thing to like make copies of  stuff and have that at a museum or something 

40:01

but when you're talking about things leaving the  building and the preservation concerns of that, 

40:07

that's like a huge conversation that would need  to involve like everybody at archives probably.  

40:14

>> Okay. >> To some degree or   another. That would be like a huge conversation. >> Kate: I wonder, Sam and Alex, if part of our 

40:25

recommendation is creating a roadmap, for lack of  a better term, or an outline, something that tells 

40:35

us, here's what the initial conversation looks  like, here's where it starts to expand, and here 

40:43

we start figuring out for this piece this piece  this piece because none of us can jump in whole 

40:52

hog and jump in. That would be great. There's  a lot of moving parts. Maybe part of what the 

41:03

planning process becomes is maybe we're the group  that says, there needs to be representative of 

41:10

archives. There needs to be a museum specialist.  There needs to be an attorney, an accountant, 

41:17

whatever it is. Representatives from the agency.  We need to make a suggestion of who all needs to 

41:24

come to the table. >> Alex: 

41:30

I like that idea. I wonder, Vesper, from  the national conversations, or anyone, 

41:44

the consultant from the Smithsonian that developed  their digital and physical exhibits on disability. 

41:52

Is this something that we could ask her? Like  what are like a handful of people? If you 

42:00

create a preliminary feasibility study knowing the  documents or artifacts or archives, few ( ) that 

42:11

has a large archive, what would you recommend?  Is that something we might be able to do?  

42:21

>> Vesper: Yeah that would be Kathryn (name?)  at the Smithsonian. I haven't talked to her 

42:34

because it is a federal position. But I  can reach out and maybe do a group e mail 

42:44

of some type potentially. >> (Multiple People Speaking): Yeah.   >> That would be big >> Kate: 

42:53

Okay. We have about five minutes to take  a discussion before we take a break. Does 

43:00

anyone else have any other thoughts? I know this  is a big topic to try to take a bite of at the 

43:07

moment. Okay. Since it is 3:55, why don't we take  a five minute break and come back together at 4 

43:15

o'clock and we can continue our discussion. That  sound good? Everybody's running away already.  

43:30

>> Jennifer: Kate, I just wanted to mention  that Elise just had to go for the day.  

43:46

>> Kate: Does that leaves without quorum Jen? >> Jennifer: I think we just needed 

43:56

quorum to start the meeting. >> Kate: Okay. Now I have to find where I am in 

44:04

the annotated agenda because I totally lost it. >>Katie: I think we're at the bottom of 

44:17

page seven. >> Kate: I have   it open on my cell phone, if I turn my  phone, it goes wherever it wants to go.  

44:27

>> Katie: Yep. Get that. >> Kate: I love technology but it's 

44:33

not always as helpful as I'd like it to be. So...  We’ll give folks one more minute, especially since 

44:51

we kinda gave ourselves an extra 5 minutes. Ok. >> Bill: I'm here I'm just eating something 

45:00

so I'm staying off screen. >> Kate: That's totally fine.   >> Jennifer: And just wanted to let  you know that a CART transcriptionist 

45:10

is only with us until five. >> Kate: Yeah hopefully we 

45:15

can wrap up our discussion by five. >> Jennifer: I'm going to start recording.  

45:22

>> Kate: Okay. >> 

45:32

Kate: So this was for a perpetual care fund. This  fund would provide the financial support needed 

45:49

of the ongoing maintenance of cemeteries  taking care of things like landscaping, 

45:56

road repairs, and general upkeep. On top  of that, the fund would offer grants to 

46:02

help community groups create memorials  where former patients and residents of 

46:08

Mass institutions are buried ensuring these  individuals honored and remembered for future 

46:14

generations. And I would like to open up the floor  for discussion on this particular recommendation. 

46:29

And this suggestion came out of there's  a Belchertown State School carousel fund 

46:36

that was establish the when the care set  was auctioned off and those funds do help 

46:42

individuals to be able to go on trips or have the  money to participate in recreation activities. So 

46:56

that was kind of the basis for this particular  idea. Is there a discussion about potential 

47:06

for the perpetuall care fund? Alex? >> Alex: That was also something that was 

47:16

suggested a while ago but we found a draft  somewhere along the way from representative 

47:28

Marty rough and senator Diane Wilkerson for some  kind of care fund. And and it's just nice there's 

47:39

already some built language that we could look  at that we know at least was presented. I don't 

47:46

think it went past the initial proposal but it's  something that was drafted by a you know, with 

47:54

a house council person aware of it or something. >> Kate: That's fantastic to have a foundation. 

48:06

We brought this up because the folks  memorializing cemeteries are close 

48:16

to retirement and right now in some cases  they can be unsure how this care continues. 

48:38

All right. So we'll move onto the next  recommendation if there's no discussion   on this one. And I lost my place again. And the next one was the potential for a 

48:52

statewide Day of Remembrance, which actually does  exist in a few places already. So this day would 

49:00

include ceremonies to honor those who lived in  Massachusetts state institutions, recognizing them 

49:07

as important parts of the state's history. The  Day of Remembrance would be a chance to reflect on 

49:13

the progress we've made in reducing stigma around  disabilities both psychiatric and developmental. 

49:21

It would help raise awareness and educate  the community about the ongoing efforts   for inclusion and accessibility. To make this  official, we'd ask Governor Healey to ask a 

49:33

proclamation ensuring that the state formally  recognizes and supports the event. And I I'd 

49:40

like to open up the floor for discussion on this  recommendation. Anyone have any thoughts on the 

49:51

potential for a Day of Remembrance. Vesper? >> Vesper: It sounds like it could be a pretty 

49:58

good idea. If we do recommend this, it would make  sense for it to be during disability pride month 

50:08

or something like that. >> Kate: Yep.   >> Vesper: There's a disability day  of mourning, too. So I just wonder 

50:20

where this may lie. There's disability  awareness week. So just thinking about that.  

50:28

>> Kate: Yes that's much appreciated. Right  now for we some the cemetery celebrations,   we use Memorial Day, but it would be nice  to have this piece of history separated 

50:40

and give it a little extra attention it. Bill? >> Bill: I get mixed views on these things and I 

50:49

think they're good in their basic substance.  I would support it only in condition that it's 

50:57

really scrutinized and can relative to any other  things we’re specifically pushing for that require 

51:06

say law change or money because legislators and  public officials will default to the easy way 

51:15

out and say we're having a day at the state house  and come and pat people on the head or something. 

51:22

Not that there's bad legislators or something, but  you'll end up with a ceremony for 200 people which 

51:29

is great and we might lose a bill or something  for the easy defaults. So how these things come 

51:37

out and ask I speak from experience. >> Bill: We had something move and 

51:43

offered a day and take a day without telling  me and were offered a day and there you go. 

51:51

So, anyway, it's just go for it, but the  context on when and how is really important.  

52:00

>> Kate: Yeah. Absolutely. Agreed with  that. You know, ideally, we want it all.  

52:08

>> Bill: But you may not, and then you  may get a proclamation that come  

52:14

>> Kate: Yep. >> Bill: And somebody in the state house basement   who writes those proclamation and signs them. >> Kate: And we appreciate that thought because 

52:22

we did not think that when we suggested this  that it could potentially be a fall  

52:28

>> Bill: I'm not saying it's bad, just don't get  it paired. Timing all that stuff is how you move 

52:36

forward on it as opposed to suddenly we're moving  on something in the state budget and then we get 

52:44

a proclamation. That's all. >> Kate: Okay.  

52:49

>> Kate: Absolutely. >> Bill: That's all.   >> Jennifer: So I can't get my hand to raise. >> Kate: Okay.  

52:58

>> Jennifer: This is Jen for from CDDER in  preparing for the presentation fur today I 

53:04

did look for the bill of State of California  that has their annual stay of remembrance, 

53:13

it's actually tied to the day of the bill that was  signed that mutt their California memorial project 

53:20

in place: So that's it the reason they those that  particular day in September for the state because 

53:28

it also memorializes the bill that authorizes  the creation of the memorial project and provided 

53:35

the funding for the cemetery restoration. >> Kate: Okay. Beautiful.? Any other thoughts 

53:46

on the potential Day of Remembrance? Alex? >> Alex: For what it's worth, just two cents on 

53:58

this, I've never been a huge fan of these kinds of  days. It's for many of the pitfalls that bill the 

54:07

scribes. I think they've super well intensions.  There's nothing for the people that do them, but I 

54:13

think they can be used to sometimes not talk about  or do the harder things. I don't want us checking 

54:21

a box for someone who wants a photo Op. >> Kate: Absolutely. Our next recommendation 

54:38

is a request potentially for a formal  apology. Asking the State of Massachusetts 

54:45

to issue a formal apology for the neglect  of certain state run cemeteries and for the 

54:51

harm caused by state institutions that  in some cases did more harm than good. 

54:57

This apology would recognize the mistreatment  and failures of the system and emphasize the 

55:03

need for accountability. On top of that,  the state would commit to educating the 

55:09

public about the history of state institutions  for people with disabilities in Massachusetts, 

55:15

ensuring that we don't forget the past and  continue to learn from it. We have found a 

55:21

couple of examples from other states which could  serve as a model for Massachusetts to follow.  

55:28

For example, one apology was issued by the Georgia  of Department of mental health. Department Thomas   (name?) and the director for the of Georgia  Department of mental health. He made a formal 

55:52

apology for the neglect of cemeteries at Center  State Hospital (name) whereas many as 30,000 

55:59

former patients may be buried. He also apologized  for the ways in which state institutions sometimes 

56:06

harmed people instead of helping them and shared a  plan with how things will improve moving forward. 

56:14

Commission members should have received a  copy of the text of the speech this week. 

56:20

The second example is an apology issued by  the State of Minnesota. In 2009, the Minnesota 

56:27

legislature passed a resolution which was signed  by Governor Pawlenty offering an official apology 

56:34

to Minnesotans with disabilities and those with  and mental illness, as well as their families 

56:39

for the harm caused by institutionalization  in the state going back as far as the 1800s. 

56:46

This resolution represents the culmination of  decades of work by activists who have focused on 

56:52

closing institutions, creating more community  and family living options for people with 

56:58

disabilities and mental illness, honoring those  who lived and died in Minnesota’s institutions, 

57:05

and acknowledging this painful chapter in the  state's history. Commission members should 

57:10

have received a copy of the resolution  and a news article about the resolution   this week. I'd like to open up the floor for  discussion on this particular recommendation.  

57:23

Does anyone have any recommendation on  requesting a formal apology? Vesper?  

57:33

>> Vesper: Yeah, I think that there's been quite  a few different apologies over the years that we 

57:39

can definitely reference. I think, if anything,  if we talk about purpose of this commission, 

57:48

it comes to starting from that place, so  I believe this is something we should do. 

57:56

The American Psychiatric association issued an  apology in 2018 for its role in perpetuating in 

58:07

racism and is violence that related to racism,  dating back to the 1800s. And I think yeah. It's 

58:17

a good place to start. When you talk about the  historical record, apologizing, acknowledging 

58:23

what was done and finding ways to move toward.  Like when we’re talking about archiving a lot 

58:29

of these things and being active in the community  and celebrating people with disabilities, yeah.  

58:38

>> Kate: Absolutely. Thank you,  Vesper. Any other thoughts on the 

58:43

potential request for a formal apology? Alex? >> Alex: I really like the language of the 

58:54

Minnesota bill. I just really like it. I always  kind of looked to it's like a brief historical 

59:02

aside, but the Fernald and institution in New  Jersey called Vineland and the institution of 

59:09

Minnesota where the fair bow institution were the  three main places where so much of this was shaped 

59:17

in the 20th century and Minnesota has just  consistently done a lot of really innovative 

59:24

and good and forward thinking respectful work  that's really thoughtful and always seems to hit 

59:30

all the right points. And when I look at this  bill, I think it's just the subtle language is 

59:35

really nice. They say some people were really  harmed and they also and I have reservations 

59:43

about that because it was many but they also  say thousands of children were taken from their   parents which is the right balance there. And they  talk in specificity about things that I think many 

59:55

people wouldn't know and it would be very powerful  for them to hear from the leader of our state.  

1:00:03

>> Kate: Yeah. >> Alex: People were forced to what is 

1:00:09

effectively enslaved labor. Patients were forced  into incredibly unfair and difficult situations. 

1:00:17

There's a lot built into this language. I just  really like it. I think it could be a very good 

1:00:22

model. And I think it's not inappropriate.  I like Hester's comments, in the other one, 

1:00:31

the doctor but the governor of Massachusetts  ordered the flags of the Commonwealth of 

1:00:38

Massachusetts at half-staff when Walter Fernald  died. The Governors of Massachusetts regularly 

1:00:46

met with superintendents and institutional  leaders to institute policies and the governor   of Massachusetts was the head I think originally  of the board of the first of these schools, of the 

1:00:59

original version of the Fernald school. I think  for that reason it's not a stretch or a reach or 

1:01:05

unreasonable to expect that a governor today can  then take up the legacy of their predecessors and 

1:01:11

say this was wrong. And I would rather hear that  from the governor than from - I don't think that 

1:01:17

comes from the Commissioner of DDS who gets  it, or the Commissioner of DMH who gets it. I   think it needs to come from the governor. >> Kate: Thank you, Alex. Anyone else have 

1:01:29

thoughts on potential for formal apology? Bill? >> Bill: I would support for a multitude of 

1:01:42

reasons. Public acknowledgement, and once  you get that acknowledgements it sets up 

1:01:47

a barrier to a model that shouldn't have never  existed. So how can you go back when someone's 

1:01:56

apologized for the atrocities. >> Kate: Absolutely.   >> Bill: Otherwise there's  elements of denial too.  

1:02:03

>> Kate: Mm hmm. Absolutely. >> Bill: Just Korea is still 

1:02:11

chafing at Japan and it influences international  relationships where a lack of apologies for what 

1:02:18

Japan did during the war and the comfort women and  stuff like that. It’s a pretty serious case but we 

1:02:24

know what went down there is pretty serious too. >> Kate: Absolutely. And I think to piggyback 

1:02:32

on what Bill has said, we are one of the few  New England states that still has large scale 

1:02:40

institutions open and operating, and one that  was constructed not too long ago at Worcester 

1:02:46

with the Worceste recovery. So to continue to  add the Massachusetts voice to the apologies 

1:02:56

that already exist, to Bill's point, publicly  acknowledging the outcome of institutionalization 

1:03:08

will hopefully help prevent the slip back into  it. And I agree with Bill and I agree with 

1:03:14

everyone else as far as what that apology can  do to lend to the discourse around this topic. 

1:03:28

Does anyone else have any thoughts or concerns or  ideas? Because that is our last recommendation. 

1:03:45

Vesper? >> Vesper: Yeah,   I think if we move forward with the formal  apology, we can definitely ensure that there's 

1:03:57

a commitment to continued work at community  disability and behavioral health initiatives as 

1:04:07

evidenced by right, we have community behavioral  health centers, we have these initiatives, 

1:04:14

as a way of, you know, there could be a potential  reference to Olmstead, which is the right to live 

1:04:20

in community desegregated from institutions,  there could be a reference to all of these things. 

1:04:27

And again, I think it's an excellent starting  point and it shows that Massachusetts commitment 

1:04:34

to this robust community initiatives. >> Kate: Thank you, Vesper.  

1:04:42

>> Kate: I think a lot of it, too, is also  if Massachusetts was first and foremost in 

1:04:50

creating these institutions, we should be first  and foremost, in owning what the fall out has 

1:04:59

been from institutionalization. Alex, go ahead. >> Alex: That and one thing that just occurred 

1:05:05

to me, I think we do just want to add so  people can I think this is an idea that 

1:05:11

could be really hard for people who don't know  any of this to understand at first. And I think 

1:05:17

at one of the connecting points that we've seen  through our work and so core to what we're doing 

1:05:22

is the records related stuff. Like the mention  of the cemeteries, I wanted to gauge if I start 

1:05:30

scribbling away and using the Minnesota stuff  as an example, if people feel okay with adding 

1:05:36

also the records, preservation, and access  we read in the report and in the first person 

1:05:45

stories from the interviews that CDDER did  is if that's okay to also consider adding.  

1:05:52

>> Kate: Okay. Does anyone have an issue  with Alex adding language regarding the 

1:06:03

records related issue? Okay. I do want to back  track and acknowledge Sam's comment about the 

1:06:14

Day of Remembrance. Sam would  you like to just speak a little   bit about the comment you put in the chat? >> Sam: Yeah. Just like I and this is just my 

1:06:28

personal opinion but I do wonder if in terms of  remembrance days or days that are like I wonder 

1:06:39

if it comes like to me it has more meaning if it  comes organically out of a disability community 

1:06:48

movement and not from the state saying like this  is now the day when we acknowledge this. I don't 

1:06:55

know. I think agree with Bill where I think  I would feel concerned that that could be, 

1:07:04

you know, a way to kind of acknowledge but  yet not have real action at the same time. 

1:07:14

That's something I feel concerned about the day  of acknowledgement. I think it could be powerful 

1:07:22

and meaningful but I feel it being used as like  okay. We checked this box kind of situation.  

1:07:32

>> Kate: Yeah. And it's an absolute  legitimate consideration when thinking 

1:07:38

about something that could turn into a box  checking moment as opposed to the number of 

1:07:48

successes that grass roots movements have had.  Especially you know disability history it has been 

1:07:54

about grass roots movements, so it's something  very important to think about. Thank you.  

1:08:02

Okay. Any other thoughts or concern  or questions that have come up on 

1:08:07

any of the floor recommendation. >> Reggie: I want to say that we have   to take of our own yard instead of going  our yard. I don't know which direction to 

1:08:18

go to because it's confusing. And I told Jen  that. I say we have to take care of our own 

1:08:28

and now we're going all over the place. You  don't know which direction you're going to.  

1:08:34

>> Kate: Reggie can you tell me more about  the feeling of going all over the place?  

1:08:40

>> Reggie: Well we're going like outside the area.  We're not looking inside the area and stuff. Like 

1:08:47

we're talking about, like I brought up to Jen  how the mayor wouldn't talk to disability people, 

1:08:54

she didn't want to associate with a disability  group, that's a real concern, you know. Those   are things we should focus on. >> Kate: Okay.  

1:09:03

>> Reggie: We haven't done it. >> Kate: And I think as we go along, Reggie, 

1:09:08

and other sections for recommendation, those >> Reggie: Yes.   >> Kate: That's where those come up. >> Kate: Right. We decided to tap a 

1:09:17

memorial piece first because I want no  say it's the lightest lift I guess. But 

1:09:25

we do have other very serious topics >> Reggie: I think if we're going to do 

1:09:32

if they’re going to do anything, they got  to make sure if we get it whatever we get, 

1:09:39

that those things that we put if it's a museum or  if it's a walking trail, whatever, those things 

1:09:46

got to be locked up so no one steals it. >> Kate: Agreed. We need some security. 

1:09:51

Absolutely. But Reggie I'm going to make a note  about the point you just made about the people   not wanting to see and meet with the  actual individuals with disabilities.  

1:10:04

>> Reggie: Right. >> Kate: Because I think you need to   touch on that. Thank you for that, Reggie. >> Reggie: I'm saying Kate, the last time 

1:10:15

someone brought that up, and I  said well we got to bring it up.   That's why I said bring it up to the  attorney general and the governor and 

1:10:25

find out what's going on here: Because,  you know, they haven't people haven't gone   through what we've gone through, you know? >> Kate: Exactly, exactly. And I think having 

1:10:38

those direction conversations with those who  lived with it is exceptionally important.  

1:10:43

>> Reggie: This is a lot to bring up  and talk about because it's not easy 

1:10:48

to be telling people about this stuff. >> Kate: Agreed. It’s not anyone’s favorite 

1:10:55

topic. (Laughter) I don’t understand why >> Reggie: Like I told you. If you want to 

1:11:03

get together and you find a way – >> Kate: I'll come out and visit 

1:11:09

you that's probably easier. >> Reggie: I'll come in your car.   (Laughter.) >> Reggie: We'll go somewhere up there.  

1:11:19

>> Kate: All right. Sounds good, Reggie. >> Reggie: Okay.  

1:11:24

>> Kate: All right. We ended a little earlier than  expected. Jen, do we have any next steps. I see a 

1:11:36

note for it in the agenda but >> Jennifer: 

1:11:44

Yeah -- any other recommendations? >> Kate: Is there anything else anyone would 

1:11:56

like add to the framework of remembrance  or recommendations. I know it's a lot of 

1:12:01

information to take in. And of course,  the special commission e mail is always 

1:12:09

open for suggestions and thoughts if they  occur after the meeting. Okay. All right.  

1:12:26

Well thank you, everyone. We appreciate that  robust discussion of our recommendations. And 

1:12:32

we're looking forward to seeing you at the next  full commission meeting in April. And CDDER will 

1:12:38

be following up with the meeting information and  any other information about scheduling that comes 

1:12:45

up for April. And we should know fairly obviously  after the 31st, we'll know more about the open 

1:12:53

meeting law changes. Does that work for everyone?  All right. Excellent. If anyone has any questions 

1:13:04

before then, feel free to contact us. As I said,  the special commission e mail is always open. Do I 

1:13:13

have a motion to adjourn a little bit early? >> Reggie: I have a motion to adjourn, yes.  

1:13:22

>> Kate: Thank you, Reggie.  All right do I have a second.   >> Alex: I will second that motion. >> Everybody wants to leave. So we'll 

1:13:33

have a roll call vote to adjourn. >> Jennifer: Okay. Thank you. This is 

1:13:39

Jennifer again, from CDDER and I will  read out each member's name and if you 

1:13:45

account just respond with yes, no, present, or  abstain. Elise Arronne (name?)? Kate Benson?  

1:13:58

>> Kate: Yes. >> Jennifer: Sister Linda   Bessom? Reggie Clarke? >> Reggie: Yes.  

1:14:07

>> Jennifer: James Cooney? >> James: Yes.   >> Jennifer: Samuel Edwards? >> Sam: Yep.  

1:14:14

>> Jennifer: Anne Fracht? >> Anne: Yes.   >> Jennifer: Alex Green. >> Alex: Yes.   >> Jennifer: Bill Henning. >> Bill: Yes.  

1:14:21

>> Jennifer: Camille Karabaich? Andrew Levrault?  Evelyn Mateo? Lori Madeiros? Vesper Moore?  

1:14:35

>> Vesper: Yes. >> Jennifer: And Brenda Rankin? I think   she left for the day. Okay. Thank you. I don't  think I missed anybody. Did I miss anyone?  

1:14:47

>> Kate: No. >> Jennifer: Okay.   I believe that's everyone, Kate. >> Kate: Thank you, everybody. The 

1:14:54

meeting is officially adjourned. Thank  you all, and have a great evening