transcript

transcript  Special Commission on State Institutions April 10, 2025

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>> COMPUTERIZED ANNOUNCER:  Recording in progress.   >> JENNIFER: We're at nine. Anne, we're at  quorum, if you wanted to start. It's up to you.   >> ANNE: Are we expecting any more? >> JENNIFER: It's a little hard to say.   >> ANNE: Okay. So why don't we get started. Good afternoon, everybody. We would 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 am one of the  Commission's two co chairs. Kate Benson is not 

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present today, so Alex Green, our vice chair,  will be leading the meeting with me today.  

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As usual, before we begin, we would  like to let everyone know that this 

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Commission meeting must follow the Open  Meeting Law. Any votes taken during the 

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meeting will be done via roll call vote. We ask that the Commission members please mute 

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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 everyone knows who is talking.  

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For any questions posted from the  audience in the Q&A 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'll be having a break around 4:00. >> JENNIFER: This is Jennifer from CDDER.  

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We do want to make sure that everyone can  participate, so we ask the following.  

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We have CART services supporting our meeting  today. These are captions that help people 

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follow the discussion. If you need help turning  on these captions, please let us know.  

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We ask that people speak at a non rushed pace and  provide yourself with a brief pause for the CART 

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transcriber to write what you have said. We ask that you speak with as few acronyms 

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as possible. Doing so will help  all participants to understand 

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

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just mentioned, if needed, during this  meeting, and to keep us on track.  

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When 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 being recorded and the videos  are available on the Commission's Mass.gov page 

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and on YouTube. Next slide, please. And I'll turn it over to you, Anne.  

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>> ANNE: We hope everyone has had a  moment to look at the agenda. These 

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are the items that we'll be discussing today. We have some announcements. CDDER will provide a 

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recap of the last meeting. After we vote  to approve last month's meeting minutes, 

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we'll be discussing the schedule for the 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 and records. Then 

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we will discuss any next steps and then wrap up  the meeting with a vote to adjourn. Next slide.  

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We want to welcome Camille Karabaich  I hope I didn't mess up your name 

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who is the new representative from the  Mass. Office on Disability. Welcome, 

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Camille. Would you like to introduce yourself? >> CAMILLE: Sure. I'm Camille Karabaich; I'm new 

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councilwoman for the Mass. Office on Disability,  taking over for our former director, who recently 

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retired. I'm looking forward to hearing more  in the meeting. Nice to meet everyone.  

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>> ANNE: Thank you. We'd 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: Thank you, Anne.  This is Emily from CDDER.   At the last meeting, the Commission voted to  approve Alex Green as the Commission's vice chair. 

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There was also a discussion about the  upcoming Commission meetings and their   schedule. At the time there had not yet  been an extension of the Virtual Meeting 

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Law that allowed commissions like this one  to meet virtually, so the Commission passed a 

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motion to hold the next meeting virtually as an  accommodation to ensure access for everyone.  

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There was an update that that law was  extended since our last meeting.  

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The Commission also discussed four recommendations  related to the Framework for Remembrance. 

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The first was a discussion about possibly  recommending a Disability History Museum be 

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created. The discussion included members  suggesting reaching out to contacts from 

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other museums to get more information on the  planning process used for those museums.  

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There was also a discussion of a perpetual  care fund to support the remembrance. There 

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was a discussion of a statewide Day of  Remembrance to honor those who lived in 

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Massachusetts state institutions. And lastly, there was a discussion 

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about requesting a formal apology  from the State of Massachusetts for   the neglect of state run cemeteries and  the harm caused by state institutions.  

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Thank you. Back to you, Anne. >> ANNE: Thanks, Emily.   Before we go into this afternoon's  discussions, we have our vote on the 

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minutes from the Commission's last meeting  in March. Copies of the meeting minutes 

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were emailed to members earlier this week. Do any members have suggested changes to the 

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minutes? If not, we can proceed with the vote. As usual, we will be conducting 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? 

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Please remember to state your name. >> JAMES: Jim Cooney; 

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I move to approve the minutes. >> BILL: Bill Henning. I second the motion.  

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>> ANNE: Is there any discussion? >> CHRISTINE: Thank you, Anne.  

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This is Christine from CDDER, and I'll  do the roll call. I will now read out 

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members' names in alphabetical order by your  last names, and when your name is called,   please respond with yes,  no, present, or abstain.  

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So I'll begin with Elise Aronne. Kate Benson is out.  

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Sister Linda Bessom? Reggie Clarke?  

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>> Here. >> CHRISTINE: James Cooney?  

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>> JAMES: Yes. >> CHRISTINE: Samuel Edwards?   >> Yes. >> CHRISTINE: Anne Fracht?  

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>> ANNE: Yes. >> CHRISTINE: Alex Green?  

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Bill Henning? >> BILL: Yes.   >> CHRISTINE: Camille Karabaich? >> CAMILLE: I'll vote to abstain, 

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since I wasn't at the last meeting. >> CHRISTINE: Thank you. Andrew Levrault?   >> ANDREW: Present. >> CHRISTINE: 

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Evelyn Mateo? Lauri Medeiros?  

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>> LAURI: Yes. >> CHRISTINE: Vesper Moore?   >> VESPER: Yes. >> CHRISTINE: And Brenda Rankin?  

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>> BRENDA: Here. >> CHRISTINE: Thank you. 

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Did I miss anyone? Okay. >> ANNE: Thanks, everybody; 

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

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the approved minutes and all the materials from   our Commission meetings are available on the  Commission's website. Next slide, please.  

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The next item on the agenda is the schedule  for the upcoming Commission meetings. We are 

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scheduled to meet on May 8th. Additionally,  CDDER has sent out a doodle poll to determine 

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if May 15th would be a suitable date to  hold a meeting in order to finalize our 

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work before submitting the Special Commission's  recommendations to the legislature on June 1st. 

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So far, we have only received five Commission  five responses from Commission members.  

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As having a quorum is crucial, I'd like to  open up the discussion to confirm whether 

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enough Commission members will be able to  hold a meeting on May 15th. Are there any 

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members who will not be able to attend  a potential meeting on that date?  

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Everybody here can make it on May 15th?  Alex? Is that good for everybody?  

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So we can set the meeting  for May 8th and for the 15th,   May 15th? So we'll go with Option 1, is  to send out an invitation for May 15th.  

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And now I would like to turn it over to Alex. >> ALEX: Alex Green.  

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Before we dive into the next thing, I would like  to take one announcement up out of order here.  

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This is Victor Hernandez's last day before  he retires! And all of you know that this 

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is a landmark Commission, the likes of  which has never existed before anywhere.   It also would not exist without Victor, as  a rule stop, and we owe him everything that 

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this has become in every way. And this took a  lot of exactly what you get with 30 plus years 

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of experience doing this kind of work, which is  a lot of grace and a lot of patience and a deep   understanding of how to get toward a solution  and make something work for a large group of 

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disabled folks, all of whom, all of us have very  different needs and ways of explaining things.  

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So I didn't want to let that pass without  deep, deep, deep gratitude to you and the 

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best wishes to you ahead in your retirement, and  hopefully some rest and fun and time with family   and all the good things you deserve ahead. >> VICTOR: Thank you, Alex, and thank you, other 

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members of the Commission. It was my pleasure. >> ALEX: We now get to move into the 

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cool stuff oh, Lauri, go for it. >> LAURI: Yeah, I just wanted to say, I don't know 

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if I'm on the recipient end of a softer version  of you, or if you could speak up a little.  

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>> I actually was going to  mention that, too, Alex.   >> ALEX: I have no idea what it  is, but I'm happy to do so.  

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>> LAURI: Thank you, thank you. >> ALEX: Thank you for saying something.   All right. We get to dive back into  recommendations today. What we're looking at, 

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we're trying to identify just kind of high level  for the rest of today and these next couple of 

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meetings is, we've been circulating, as you've  seen, we've sent around recommendations for things 

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that we may want to ask for in the executive  summary to go with the report at the end.  

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Today we're going to look at a lot  of those different recommendations,   and we're going to decide whether they're kind  easy ones to just say, yeah, we'll go with those, 

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and from there we can kind of get the language  just right over the coming weeks. And some members 

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with different areas of expertise will need help  doing that from you, but we'll get it there.  

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And then there are going to be some things that  we probably don't all agree on, or don't all agree   on the way that they're taking shape. And that's  good; we should slow down and look at those and 

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start to go into them and say, what do we want  to do? So that brings us to the first thing.  

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At the last meeting, we had a lengthy discussion  regarding possibly recommending the creation of 

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a disability museum dedicated to preserving the  history of residents from state institutions.  

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The museum would also highlight the  independent living movement, the process of 

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deinstitutionalization, and the ongoing efforts to  integrate people with disabilities into society.  

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It would be a resource hub, offering links to  records and information for former patients 

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and their families who are looking for  their historical records. Whether it's   a physical or digital space, the goal would be  to make it easily accessible to everybody.  

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But this is a tricky decision, and this is a very  weighty thing to call for. And so what we wanted 

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to make space for for the next 15 minutes or  so was to discuss and brainstorm the pros, 

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what might be good about doing something like  this, and the cons of doing it, and in what 

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way do you see pros in doing it as a digital  thing or as a physical thing? Or do you see cons 

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doing it as a physical or digital thing? And I think that's going to help guide the 

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report crew in our attempt to try to reflect  what everybody wants because I don't think 

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we feel comfortable yet trying to characterize  where everybody is at, and it would be really 

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helpful to know just how folks feel about it. So to do that, CDDER has set up a cool new 

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technological tool, the likes of which I've never  seen and am eager to be guided through using, 

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which is kind of like an online whiteboard  with Post it notes, and I don't know if you   want to queue that up, Christine. Okay. So this is kind of how we're going to be able 

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to capture all this information,  write it down, and it will be   really useful for us to look at later. The way this works, if you want everybody, 

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the same sort of stuff Anne was calling out to  raise your hand, say who is speaking when you 

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come on, and share your thoughts about what you  think might be a pro of having one in a certain 

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way or not at all, or cons, however you feel  about it. And they're going to take those down 

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and I'll facilitate the conversation. So someone as always, the uncomfortable 

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teacher moment in me somebody has got  to go first, so somebody go first.  

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Lauri, awesome; go for it. >> LAURI: I want to say one   thing before I give you my thoughts. I worked for a number of years with 

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Martha Ziegler; I don't know if anybody  on this call knows yeah, Victor.  

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And one of the things that it always, always,  always, always has been a passion for her is 

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to gather and preserve these records. So if you don't mind, in a little bit of 

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remembrance and honor of Martha Ziegler, that  inspired me years ago, and it still does, 

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and the reason is because Martha Ziegler  inspired me about getting that done.  

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I wanted to in remembrance of her, say that. I also wanted to say, does it have to be one or 

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the other? I really kind of feel like both have  accessibility strengths and positives. And I can 

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see that one or the other might leave some out. So I like the idea of both, and I just want to 

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give a quick plug format actual museum where you  walk in. For years and years and years and years, 

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I of course learned about, heard about, sought  out, took courses and classes in the Holocaust.  

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But until you go to a Holocaust memorial,  as moving, touching, and deeply moving as 

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the information is, to go to that memorial took  my breath away, because it was experiential.  

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So there's something incredibly powerful  in the physical remembrance, if you use, 

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and the words museum, if you use  museum, remembrance, whatever it is;   yet on the other hand, those for which the trip  would be difficult or access to be difficult, the 

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other would also have me be able to access it. So I feel like both have access points that one 

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or the other would not have. So I don't know if  it's an idea to go with one while simultaneously 

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building the other, but that's just my input. >> ALEX: I don't know how others will teal about 

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it and it's up to the rest of the Commission to  respond but I love the clarity you're putting   forward here. And I want to name I heard a bunch  of things in there that I think are good. So just 

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make sure I'm characterizing this right. I think about Ziegler what's important you're   saying to zoom out of, there are people who came  before us in this work who wanted to make sure 

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these things would be remembered and memorialized,  and I think that's really important.  

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The second thing I'm hearing you say is that a  memorialization component of it like what you 

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experienced at Holocaust museums is a crucial  aspect of what makes any kind of museum effort, 

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which also has teaching and other things as  part of it, very powerful and essential to do.  

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And then if possible, that you see a real promise  in trying to do both for the different access 

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points of digital and physical. Is it fair to characterize those   three things that way, Lauri? >> LAURI: Perfect, thank you.  

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>> ALEX: Vesper Moore, you're up next. >> VESPER: When we talk about some of the 

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pros and cons here, there are a lot of  requirements for what makes a museum a 

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museum, and there's a lot of time, and I  think it can be very time consuming.  

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And I think past use versus active use, something  you have on display, versus it could be more of 

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a community environment where people are engaging  with this history in some type of way, that could 

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either be informally a gallery, or something  that may travel, I think the pro is I mean, 

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I would agree with some of the existing  pros that are here for continuing education 

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and just awareness and some of those pieces. But I think there's a question of, is it a museum, 

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or is it a community space, or an online space,  or both? Which I think is a common conversation 

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in the disability museum and historical space. >> ALEX: And can I ask just a follow up question 

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clarifying on that? Have you heard conversations  or do you envision then some kind of financial 

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support or support in some way? If these  things were to be exhibits or the use of 

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existing spaces and supporting those to focus  in this direction, like, yeah, what have you 

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heard that are good things about that, and what  are things that you've heard about that that are   not good that we should be warned about? >> VESPER: Well, for a museum environment, 

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you would want someone to oversee the  operations, so you would need a few FTEs, 

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at least, full time employees, on site doing  that work. You would need support for consultants 

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in terms of handling temperature controlled  environments and materials and recommendations.  

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There is like also the architectural element,  depending on what building you're using, 

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how much natural light comes into that  space, how much darkness there is.  

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There's a lot of thought that goes into it. A lot  of thought, and I think that's just kind of like 

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just to give you a sense. You need the employees,  you need the funding, you need the space,   you need there's architectural changes that  might need to occur if you're using existing 

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space. That's a challenge, yes. >> ALEX: Thank you very much.  

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Other folks' thoughts, comments? Pros, cons,  or things we're not considering at all?  

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I want to be clear about where this falls. All  of these, we will issue as recommendations and   so there's lots of different ways to  make a recommendation to the State, 

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and you can think of how like  the legislature does things.   Sometimes they vote yes on things, sometimes  they vote no, sometimes they vote to create a 

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group like us to look into something and find out  more about it and then give it instructions.  

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They send it to be studied. There are lots of it  doesn't have to be legislators who do that.  

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So sort of to sum that up, two components  of what we're kind of after, I think, is, 

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do we think there ought to be one at all? And  then do we acknowledge what issues there might 

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be in a way where we can help recommend how to  set the things in motion to make it succeed?  

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I mean, in a very blunt statement, it may be the  feeling of everyone that this is not something we   want to try to do or we might want to try to do  something different or recommend something very 

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different. And there's a lot in between there.  Like Vesper was saying, one way to support 

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the component of an idea is to support existing  spaces with something in a way that they can use 

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this history; but even there, probably we need  to say, who starts to get the ball rolling?  

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So at the simplest level, even just, yeah, I  think we should be pushing for this, or no, 

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I think this is really too much, or anywhere  in between is good to hear from folks.  

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Bill? >> BILL: Obviously all the positives, 

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Lauri laid them out. I concur 100 percent with  all of it. The idea of a museum excites me.  

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My first reaction, however, on setting it up, went  right to Vesper's points. Millions of dollars I'm 

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looking at right there and the resources or the  money, which then leads to me liking your point, 

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get a process going to build on this. I think if we came out, especially in   the current environment of very tight  state and federal money, it's a no go, 

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but something that says let's say we embrace it.  I don't want to presume. I think most people see 

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these positives. This idea was embraced, however,  recognizing was embraced, so can we embark on a 

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feasibility study or something like this? Not a legislative study, please.  

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>> ALEX: You have my word. >> BILL: If you don't know, a legislative study 

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goes six feet under after one year. A feasibility  study is an actual document, so somebody shall be 

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charged to look at this whoever it is with some  specifics specificity is the word. That might be 

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the way to go. So, thank you. >> ALEX: Excellent.  

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All right. This is very helpful. It's very  clarifying, actually, just to touch on these   things. This is not the last time we're  going to touch on this. This is exactly 

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why we're doing this meeting and two more. This seems like one of the areas that's going 

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to be hard to pin down just right so what I'll  do is I'll take this, I'll bring it back to the 

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report folks, CM Edwards has offered a lot of  good thoughts on this, and I think we can try 

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to process this into a couple different options on  language and then recirculate it and start to use 

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those as different ways to come at this issue. Just understanding that it's a big challenge, and 

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it's a right place to be focusing that energy. So if you didn't speak and you want to share your 

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thoughts on that, please email them to the CDDER  crew at the SCSI email address. And you can say, 

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I don't feel like speaking on this, but these  are some of my thoughts. That's totally fine.   So, thank you, everybody. And thanks, CDDER folks,  for setting this up. It's a really cool tool.  

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All right. I think we're going to move on  to some of the other recommendations.  

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You got some of this emailed around. We'll do this  for the next 20 minutes or so and then we'll take   a break and come on back together. What we're going to look at is 

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proposed recommendations about  records and records access.  

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So we have four groupings that we've taken  the many recommendations and kind of put them 

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into. There are 17 recommendations  overall, and that makes sense, 

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frankly. We've grouped them as recommendations  for changes to management, preservation, 

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and access rules, how people can get documents,  how they're stored and how that's done.   Recommendations for changes to laws  about how people can access those.  

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Recommendations to improve access  for former patients and residents   or their families and researchers. And recommendations to create pathways 

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for people who have these records out and about,  back to Lauri's point about Martha Ziegler, 

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folks who held onto documents and may be afraid  to turn them over, or other institutions that have 

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them and somehow came into possession of them; how  do we facilitate, how do we make it possible for 

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people to get those documents back into the kind  of handling of the State in a responsible way?  

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So, let's start with the changes to  management, preservation and access rules.  

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What we've done is simplified  what we sent around.   At the last meeting, it was made very clear,  and it was a really good observation from the 

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CDDER folks, that right now, some records are  held by some agencies, where if they try to 

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get them over to the right place, the law says  they actually have to destroy them instead.  

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And so anything else that we do probably needs to  begin with this first recommendation, which is a 

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moratorium, which means stop, on destruction of  records. And what this would mean is we ask the 

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State to stop destroying any institutional records  that might be scheduled for destruction until 

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these other changes come into place. And that would make it so that nothing   is lost in the process along the way. I don't know if what seems like the best 

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way of forward sorry, I'm grabbing a pen if we  should discuss that as a starting place and move 

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to the next two or if I should move through  all three? But maybe we should start there,   and I think a simple way to just get a rough  sense on this would be, does anybody have 

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any objections to that? Sam? >> SAMUEL: Not objection, per se, 

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but the moratorium on the destruction of records  I think needs more clarity, because I think that's 

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a big category, where there's a lot of records  that are created within the process of office 

31:27

work that are not historically significant, that  are not necessarily worth retaining in the long 

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term. I'm thinking of things like, you know,  like just day to day administrative records. So 

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I think having more clarity around exactly what  we do not want destroyed would be helpful.  

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>> ALEX: That's great. That's very, very  helpful, and I think there are a bunch of   ways we can discuss how to kind of  manage the expectations on that.  

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And some of it may be who decides what that  moratorium length looks like, and who has the 

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power to lift it at some point, because it may be  too hard to separate out which documents are where 

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at the beginning. But you're right, very quickly  that could become a nightmare where we have three   million pay stubs that nobody needs anymore. Any other either objections outright, in which 

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case, please say so, or modifications, things  you're concerned about it, things you'd like to 

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be taken into account and maybe have us just look  into it and get back to you with a few answers?  

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Lauri, go for it. >> LAURI: To that last point,   I was intrigued about how do we know what's  important to save and what might not be.  

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It automatically made me think of and I'm sorry, I  can't think of his name the fellow on PBS who does 

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that show, Finding your Roots, right? I wonder  if there is such an entity that could maybe 

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advise us on what would be really important  to preserve, and perhaps what could just go 

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straight to digital. You know what I mean? Because I think we might have good ideas about 

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what that is, but from the perspective of somebody  who does this, who researches preserved records, 

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and wishes that certain things were preserved  and they weren't, or who would know what would 

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be best to ensure is reserved first. >> ALEX: Good. So that may move us 

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actually to the next recommendation, and  a thought about how to handle that.   The next recommendation is to  identify key record subcategories, 

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which is what we're talking about here, what  should be retained and what shouldn't?   And one is to establish these  categories in that recommendation, 

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because not all records are significant, so  to defining what to keep what is important.   What your comment raises, I think, is, perhaps we  should be saying that "in consultation with," and 

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I guess there, we have members on this  Commission, all of whom are advocates,   represent organizations and entities; do folks  have a sense of, if we were to include language 

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that says, "with is advisement of" or "in  consultation with," an organization or an 

34:38

agency that you feel has representative voices  involved in it, and good thinking about this, 

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where you'd be comfortable with them  saying we want these kinds of records kept,   we're okay with these ones going away; do you  have a sense of who you might recommend?  

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Is it an MOD thing, is it MDDC,  outside organizations, MAMH?  

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Vesper, go for it. >> VESPER:   Well, I wouldn't claim to know as  much about what's needed for public 

35:26

records or a lot of these things. I do know that at our last meeting, 

35:31

we were talking about a potential contact  that we knew, to whom I've reached out.  

35:37

However, due to some changes, they may or may  not be available to do the work at this time.  

35:45

So, my other recommendation, I attended a  conference I think I was discussing this 

35:52

with a few others here that I had gone to,  I think maybe a year or two ago now. It was 

35:58

the Organization for American Historians.  I think they may have some guidance.  

36:06

And depending on what direction we take, too, I  think it would be a good opportunity to present 

36:12

our findings and work there, eventually. But I do think by reaching out to them, 

36:19

we can maybe get some insights in  terms of how we can proceed here.  

36:25

I do think the issue of the moratorium and  destruction on records, I wouldn't claim to 

36:32

know what that looks like here in Massachusetts,  and I think even if we ask others, there may be 

36:40

different requirements state by state. So, yeah, I think that's my recommendation. 

36:47

I know that the Organization for American  Historians works with the History Channel,   sponsors their conference every year. They've  got a lot of experts and that could be an 

36:57

external entity we could reach out to. >> ALEX: Awesome, thank you so much.   And this leads also to the third recommendation  which is revising the residential schedules, 

37:06

so at the end of all of this, what would happen  is they could begin to destroy documents again 

37:12

but they would know which categories to keep or  let go of and they would have a different timeline   than currently exists, which the timeline now is  destroy it all which is a very serious problem.  

37:24

We desperately need to make sure  that disability community voices are 

37:29

consulted in identifying those categories. I'm a little less concerned about Archives 

37:35

being I think Archives has the good sense  at the fore of it, because they deal with   so many sensitive documents already, to  help guide some of it. But that goes to 

37:45

our dear colleague. Sam, go for it. >> SAMUEL: Yeah, I would question if 

37:51

historian is the right kind of organization  to reach out to, just because historians are 

37:59

interpreters of documents and not necessarily  like stewards of documents. And I think that 

38:06

the archival profession has a lot of theory  around archival accession, and what do we keep, 

38:15

not keep, that there's a lot there, and it's a  big ethical question in the archives field.  

38:23

So I think that would be more the  avenue that I would pursue.  

38:33

>> ALEX: Okay. So just recapping these, I know  that they need a little more specificity about 

38:40

the "how" and some of the categorization. Again, one option is to say, stop destroying 

38:47

them and then this group of people needs to  make a determination in this amount of time 

38:52

to figure this out. And we have folks on the  Commission who can help us determine that.  

38:57

But just to sort of canvass the group once  more, because this is a big direction to 

39:03

start to go in and this is a large part  of our records recommendations, any very 

39:08

serious concerns that catch people or any outright  objections where you're like, I don't think so; 

39:14

this is not good. I would rather hear those now. It can be a gut feeling, too. To Vesper's point, 

39:22

to Sam's point, to many of us, I know we're not  all experts on huge areas of this, so this is why 

39:29

we're trying to be sensitive about this. To that  end you can say, I just have a gut feel that this   is wrong, and that is A okay to be doing. Jim, go for it.  

39:48

>> JAMES: If I can get my mic  on. I'm sorry about that.   So I'm always mindful of unintended consequences.  And one of the issues, depending upon how things 

40:05

kind of proceed, you don't want to have the  interpretation being, you then have stacks 

40:17

and stacks and stacks of useless information  that nobody can access in an organized way.  

40:27

So I'm just kind of echoing Sam's point about kind  of defining it fairly explicitly, and defining 

40:41

both content and time frame fairly explicitly,  so that in the end, what you're really after is, 

40:54

organized processes and organized information  associated with those organized processes, 

41:02

and instructions to facilities  and institutions that currently 

41:09

other custodians, that are implementable. >> ALEX: Fabulous. Really wise, really helpful.  

41:19

Sam, can we prevail on you to do some  brainstorming with Archives of the right 

41:25

wording for this? I would add one other  component to what Jim has said, which is, 

41:31

which steps in these documents are essential to  that as well? Like of our other recommendations?   Just to make sure those aren't accidentally  getting in the way of this, too. I have the vision 

41:41

of the last scene of the Indiana Jones movie, the  warehouse scene and we don't want to do that to 

41:47

all of you. So if you don't mind taking this up. It sounds like there's no strong objections to 

41:53

doing this; just get the language  right, and a good first step.  

41:59

This will come back to us in a few weeks as  new language, but pretty close to when we're   winding down because it doesn't sound  like this is an area that has overall 

42:09

kind of ethical objections from the crew. So if you do feel that way, please let CDDER know, 

42:14

and we're going to move on to the next slide  and the next set of recommendations. And 

42:19

then I believe we will we may do the  break a little earlier; we'll see.  

42:26

Changes to management, preservation  and access rules. I think because   these might be interrelated, I'll  just go through them all together.  

42:35

So the recommendation is to develop a clear  work flow for record requests. Establish a clear 

42:42

and consistent process between the agencies that  handle these records, including allowing Archives 

42:50

to confirm whether they hold specific individual  records. This coordination will streamline access 

42:58

and ensure transparency in records management. So the gist of this is that each agency has its 

43:05

own processes. Those processes might not be  aligned. That means that sometimes people don't 

43:11

get documents and can't even know that they exist,  and the goal of this would be to get everybody 

43:17

together to develop a clear work flow. Part of that work involves, let's say someone 

43:25

asks for a record, and you find that a sheet  of paper that has their loved one's name on 

43:32

it but it also has 30 other people's names on it.  Someone has to cross out all that information on a 

43:37

photocopy so you can't see it because it's someone  else's medical information in some instances.   The next recommendation would be to make sure  that process is in the hands of Archives and not 

43:49

the other agencies, because right now it's  not clear who is supposed to be doing it, 

43:54

and that leads to some challenges.  So it would house that in Archives   because Archives already does that every day. And then the last recommendation is obviously what 

44:05

we've talked about in these last five is, it's  a lot of work! Archives has expanded staffing 

44:12

for areas that are very important, like judicial  records, and a recommendation would be here to 

44:19

that we recommend that they expand the Archives  staffing so there are people in place who can 

44:26

handle all of these documents, knowing that  this is a pretty big mess to start to clean   up and the requests will be coming in, and  we know they come in by the hundreds.  

44:36

Those are our three recommendations to look  at. Same sort of thing: Anybody with concerns, 

44:42

outright objections, things you think are  missing? Very grateful to Sam for informing 

44:51

a lot of these steps and helping us get a  sense of Archives' day to day processes.  

44:59

Lauri, go for it. >> LAURI: Yeah, just,   hire additional full time staff, Recommendation  No. 6, who? Who hires those full time staff?  

45:09

>> ALEX: Oh, sure, just above up. The  recommendation is expand Archives' staff. 

45:15

You're right, we need to name the  stakeholder. Sam, who are we asking   for that, if I can put you on the spot? >> SAMUEL: Probably Kaitlin Ramos [ph]. 

45:26

I don't know if people know this  but she's been moved up to curator   so she's head of Archives at this point. >> ALEX: Excellent. So we would ask the curator 

45:34

love it, good catch, Lauri. Ask the curator  for expansion of the staff. That's great.  

45:43

I would imagine like a lot of  those recommendations, Lauri,   we'll have to put in some language  about where those requests go, 

45:50

but we can tag that and say it needs to  be in the next something something budget,   or go to something something legislative,  gosh knows what. We'll figure that out.  

46:00

Other comments? >> LAURI: Can I just say one other thing? There 

46:11

has been a number of mentions about, although it  would be kind of third party removed, references 

46:23

to funding and legislators and budgets and things  like that; I just want to put it out there that it 

46:32

doesn't have to be from the legislators. You  know what I mean? From the state budget.  

46:40

I don't want to overstate, but there's  so many grants available that I think 

46:48

this endeavor could fall under a number of  umbrellas. And some of those grant endeavors, 

46:56

we would fit nicely, you know, in there. I think of the Cummings Foundation, just off the   top of my head, and I don't mean to parcel things  out but I want us to consider the possibility that 

47:09

we don't have to be single sourced; that's all. >> ALEX: Absolutely the case. I think also in 

47:16

house, what we're walking a line on here is to  name the issues that need to be resolved, and 

47:24

suggest the directions that are easiest for them  to be resolved. Because as we all know, these are 

47:29

so complex, these issues, that it's been hard for  the agencies to even get the conversation going.  

47:35

But you don't want to overdo it where you're so  restrictive in what you say that you're saying,   do it this one way, and that gives to Jim's point.  Then we're accidentally backing up into some other 

47:45

issue and creating more trouble than good. There are so many ways where we can   gesture in one direction. It is also possible for the Secretary 

47:52

of the Commonwealth to allocate his funds  differently when he goes through his budgets. 

47:59

It is possible for the Governor to issue executive  orders that streamline large portions of this or 

48:05

instruct agency members to do certain work. It's possible for organizations, and Archives 

48:11

already does this, to go out and get grants.  So we don't want to over constrain that.   We do want to recommend an easier pathway when  there is one, just to draw on that expertise.  

48:22

Sam, go for it. >> SAMUEL: Yeah; I think a question I had about 

48:28

Recommendation 5 was in the actual language that  you sent us. It seemed like it was more to do with 

48:36

Archives, records that we hold in our collections.  This makes it sounds like it's all DMH's and DDS's 

48:45

records, but it's a little bit of an overstep.  I think the priority was for us to be able to 

48:54

have control of the records that are  in our holdings, basically, of being   able to redact and release as appropriate. >> ALEX: Fabulous. If you can flag that and 

49:06

send it, it would be fabulous to do. And along those lines, also, I'm still 

49:13

very unclear about who has the right to  order redactions of certain documents. 

49:19

Like when you get a request at Archives  and you've got to send that over to DDS,   like who says what has to be redacted, in  what way? I think some of that streamlining 

49:28

would be helpful to know where we should be  locating that as we try to help offer ways to 

49:34

clean up the decision making and ease this. >> SAMUEL: Yeah, because currently we don't 

49:41

handle those records at all. We just create  scans of them. We send them to DMH or DDS, 

49:48

and then they make decisions about redactions.  I think this is suggesting a little bit of a 

49:55

different approach with the records that have  already been deemed historical and archival.  

50:01

>> ALEX: Got it. Yeah, we want to make   sure that we're addressing the key complaint we  saw in the informant interviews, which is the 

50:08

feeling that they went from archives to agency  to agency to agency and never really came back 

50:14

around. So to locate it in Archives where they  originally go is probably the streamlined goal.  

50:22

All right, focus. This is great. I know this is  a lot to take one. We are going to take on more   because this is huge progress to get through.  What we're developing is a sense of consensus so 

50:32

when we get down to the final document in a month,  there aren't surprises for everybody. And so these 

50:38

are our chances to really talk about this stuff. Let's take a five minute break, and then we're 

50:47

going to go into a few more of  these, if that sounds okay.  

50:53

We'll come back together, let's just say on the  hour, at 4:00. All right? Thanks, everybody.  

51:00

(Break) >> ALEX: All right.   I think we've got folks coming back. We'll  call things back to order. And dive in.  

51:09

So, where we're going to go with this,  folks, is we're going to go through some more 

51:16

recommendations. We're going to try to get through  the recommendations on records access today; 

51:23

and then at the end, I'd like us to try  to take some votes on the general spirit   of those recommendations. Not the exact wording,  but just so that we can feel comfortable starting 

51:33

to draft report language around it, and know  that we're going in the right direction.  

51:38

I'll probably say that again because I know  folks are coming back in the meeting as we go.   In the interest of time, our next section  is to change laws around record access.  

51:51

There is something is called the Sunset  Law that is currently in front of the   legislature. Archives has advised on it, the  Secretary of the Commonwealth recommends it. 

52:02

It would change the existing laws in the state  to open up institutional records after 75 years, 

52:12

with the exception and other states have laws  like this do not get in the way of HIPAA, which is 

52:18

the federal privacy act on medical records, so if  someone is still alive, you are not getting those   records, no one is getting those records. And the language of the law is specific to 

52:30

records in the holdings of the Archives. It  is not more active DDS or DMH records.  

52:37

So if someone is still alive and being served  by DDS, this law does not grant people access 

52:43

even if those documents are 75 years old. The next is to implement use restrictions for 

52:53

public records. What we mean by that is, the State  can pass this law, and if there are no rules that 

53:01

they put in place, then people could start copying  things and throwing them all over the Web.   And obviously, there are concerns about  that. And there are also good examples of 

53:10

how government deals with that already. An example would be, if you get a birth   or death certificate at the Registry of  Vital Statistics, it says right on it, 

53:20

you can't photo this and spread it everywhere. This would say, hey, Archives, this law should 

53:27

pass and we agree that it should pass, but  also you need to develop some rules around 

53:32

this so people are respectful when they  get records about how they use stuff.  

53:39

I think that's only reasonable. An example  would be, at many archives you sign an   agreement with them saying I won't do that. And  they make exceptions on a case by case basis, 

53:50

if someone has a disability where they can't  make it to the archive, they work with them.  

53:55

That's why it's better to have rules than a law  because the rules let them be flexible about how 

54:01

to meet people's needs but protect the spirit of  not putting things out there just everywhere.  

54:09

And the last is to modify laws  recording restricted medical records. 

54:17

This would be a call to change existing laws  to allow researchers to access medical records 

54:24

within 50 years of an individual's death  upon proving that the person is deceased.  

54:31

That's actually not correct, I think what  the recommendation says in the original   document, so I want to amend that. What this would do, and I think the best 

54:40

thing to do would be to strike this until our  next meeting, the intent of it, if I remember 

54:45

correctly, came out of meetings where it was about  family members who want to access records when 

54:52

their loved one died less than 50 years ago. So, for instance, one of the informant interviews, 

54:58

many of the informant interviews were about  relatives of people who died in a state   institution, but it was really impossible for them  to find a way to access their loved one's medical 

55:09

records because they were not formally designated  by a court as that person's guardian.  

55:16

And so this would be a way of allowing them  to look at this. I don't think any of us ever 

55:21

approved, just to be clear, researchers is a  different thing, and I don't think that was 

55:27

the spirit of what the Commission was after. On the first two of these, I wonder if there are 

55:35

any objections, outright nos? Drew, go for it. >> ANDREW: I was just curious, and I apologize; 

55:45

I couldn't get in at the last meeting so I don't  know if you covered this, on Recommendation 8, 

55:51

can you explain that a little more? I'm confused  as to how if we make something a public record   we can restrict somebody from using it in a  particular way once it enters the public domain.  

56:02

>> ALEX: It goes right to Sam, thank God! >> SAMUEL: I can talk a little bit about that. 

56:07

I think that there's already things in  archives that have some use restrictions, 

56:13

particularly around like fragility.  A lot of the 1600s and 1700s records,   we'll show you the online version but not  the, you know, physical record because of the 

56:23

fragility of it. But there's also restrictions  around things like security and things like 

56:30

privacy and also just, there can also  be internal kind of restrictions like 

56:36

we're not going to digitize this, but  we know it's here and we know that if 

56:43

folks are asking for it, they can look at it. That's kind of the thought process behind that.  

56:50

So there's like layers of restriction  within Archives that like is from, 

56:57

you know, extremely restricted, no one can  view it, as kind of is the case now with   these records unless they have a court order, all  the way to things like the vital records from, 

57:08

you know, 1910s that are all on family search  and can be found by anybody around the world.  

57:16

There's a lot of gray area between that. >> ANDREW: Thank you, understood. I was 

57:21

thinking if I came in and you gave me a copy  of a record then you could tell me that I   can't go post it online or something like that,  which I was wondering how we'd police that.  

57:29

But thank you. That makes sense. >> ALEX: Great question.  

57:35

Other folks, questions?  Camille, go for it, please.  

57:41

>> CAMILLE: I just have kind of a clarification  question. Specifically with Recommendation 7, 

57:52

would this I guess my I don't really know anything  about this area of the law, so my question is, 

57:58

would this be treating these types of  records similarly to the records of people 

58:06

who don't have disabilities, or who weren't in  institutions? Like is this a similar requirement 

58:14

across the board for all individuals? >> ALEX: Great question. I'm happy to answer, 

58:19

but I do want to give Sam,  again, if you want to chime in,   I'll give you the opportunity to do so. >> SAMUEL: My understanding is that the law 

58:29

applies to all records that are over 75 years  that don't have some kind of safety restriction or 

58:37

something like that, but that medical records are  a little bit different because of the HIPAA law, 

58:46

which is 50 years after death of the  individual. So it's kind of, 75 years,   or 50 years after death of the individual,  so like if someone is 93 or something, 

58:57

and they were institutionalized when they were  20, you can't look at their record if they're   alive. That's kind of the thought there. >> ALEX: In the most recent filing of the bill, 

59:10

it has come up over the years, for maybe  ten years the Secretary has pushed it, 

59:15

the biggest concern was that as it was originally  written, it didn't narrow it the way that you're   asking and it seemed to apply to DDS records and  DMH records that were active, and not good.  

59:27

And so this year with the advice of the House  counsel, they've narrowed it pretty much. It 

59:32

specifically says institutional records and  uses very similar language to the Commission to 

59:37

define the state institutions that are currently  restricted. That's going to create some of its 

59:43

own small issues, I'm sure, but it generally  applies in that way and then has that kind of 

59:48

breaker that Sam is describing, where it's one or  the other, depending on whether the individual is 

59:55

alive and where HIPAA sits on the issue. Sorry; it's like super it's like the most 

1:00:04

complex one line bill I have ever  seen in my life! (Laughing)   So many layers to it. Other folks' thoughts, comments?  

1:00:18

Great, all right. We're going to  keep on moving. We'll circle back.  

1:00:23

I said when we came back together ten  minutes ago I know some folks were still   coming back what we'll do at the end is  go back through all of these and take a 

1:00:31

vote on consensus around the general spirit of  the recommendations, not the letter of them, 

1:00:39

because it's understood that those need revision  based on our conversations, but a vote on like, 

1:00:44

I do or do not support the general direction that  each of these recommendations is going in. We will 

1:00:51

strike Recommendation 9. Let's keep on moving. The next section is on improving access overall. 

1:00:59

Like we heard from so many people, getting access  to records proved very, very, very difficult, 

1:01:05

and we want to try to clarify that with some  helpful steps and make those processes easier.  

1:01:11

Recommendations 10 is a very straightforward  test on that, to post clear instructions for   records access. It's plain language, easy to  understand and consistent across agencies. If 

1:01:21

someone thinks, oh, yeah, my loved one was in  this facility, so I'll look on the DDS website, 

1:01:26

they'll see the same accessible language  they would if they went to the Archives   website or DMH website, wherever they go. The second recommendation would be to create 

1:01:40

a Searchable Public Inventory. Obviously  this wouldn't include people's names on   it. But the goal here would be that if you  knew your loved one lived in an institution, 

1:01:51

it could be very frustrating to spend years and a  lot of money to access those records, especially 

1:01:56

if you had to go through a court process only  to find out that the records didn't exist at   all. And a public inventory divided by categories  would tell people, if all of the records from this 

1:02:09

institution for people with the last name that  begins with these letters don't exist anymore, 

1:02:15

it would help them know right away that they  shouldn't go looking. It would help everybody 

1:02:20

access information a little more easily. The baseline for that actually already exists 

1:02:26

to some degree in some things that Sam has  shared around, and it's interesting to see. So 

1:02:32

they wouldn't violate people's privacy, but they  would tell you the types of records that exist,   and as a result, the types that don't anymore. The last recommendation is borne out of our 

1:02:44

earlier meetings and I think a good sign that when  folks comment, we are adding stuff in. This comes   from our colleague Evelyn Mateo's points, that  it's very hard to go through these records alone, 

1:02:56

that that can be a very difficult process, and  that it's very helpful to have a companion if you 

1:03:04

can. And we realize that many people don't have a  companion very easily at hand, and so the language 

1:03:12

of this and it's more specific about who would do  it and how in the documents you received last week 

1:03:17

would be to train peer guides for individuals with  disabilities, other folks with disabilities to go 

1:03:23

through those with you, so you feel like you  have a companion going through that process.  

1:03:31

So those are our three recommendations. There's  more detail in the files that were circulated 

1:03:36

about exactly where and how; but again, the  general sort of feeling, I would love to know, 

1:03:41

I like this one, I don't like that one, I'd change  this one, questions you have; anything at all.  

1:03:54

Lauri, go for it. >> LAURI: I just have a question. So 12 

1:03:59

recommendations, they move forward to who? >> ALEX: Our recommendations?  

1:04:07

>> LAURI: Yeah. Where do they go? >> ALEX: They go to the legislature,   they go to the president of the Senate,  they go to the Speaker of the House, 

1:04:16

they go to all of the members and the clerk of  those groups, and they become a public document 

1:04:22

and recommendation I think that we're also at  liberty this also will go to the Governor.  

1:04:28

>> LAURI: So then is there, then, here are the  recommendations, and we ask that someone sponsor 

1:04:39

to adopt these recommendations? What's the ask,  then? Here are the recommendations, but then, 

1:04:46

what's the ask about the recommendations? What's the action step after this?  

1:04:53

>> ALEX: So, to a larger degree, we're  going to have to take that up next month,   who enforces this, who oversees it, do we want  to ask that the Commission continues its work, 

1:05:02

our mandate ends when we submit the report?  Do we take it up and submit it in some form 

1:05:08

in which case we need someone to file a bill. To your point, on the accountability of that, 

1:05:13

that's one way to ensure accountability. Another way to ensure accountability is   that the sponsors of the bill could some  way through the State House arrange for 

1:05:23

hearings and regular check ins to make sure  things are being done with the report.   There's also community stakeholders  who can ask for that.  

1:05:31

But our work, to be very specific, the reason  that the documents that were circulated earlier   in the week are specific the way that they  are is they tell everyone which agencies or 

1:05:42

individuals we think need to take up the work to  fix the problem that we're addressing. And they 

1:05:48

divide them into those recommendations saying,  you, archives, will correspondent this process; 

1:05:53

you, DMH, DDS, need to do the following. Do they have to do that? We don't have the 

1:05:58

mandate to say that. But the 500K report that  comes with these documents is a significant 

1:06:04

and serious issue, and our recommendations  come with the weight specifically attached 

1:06:10

by the legislature to look into this  and come up with recommendations.  

1:06:15

So we're sitting in a process  right now that gives us the   legitimacy to make those recommendations. >> LAURI: So, not that I want to add on anything, 

1:06:28

but I wonder if we could think about some  sort of language, somewhere, somehow, 

1:06:36

that says should these recommendations be I don't  even know what the word is adopted, you know, 

1:06:45

we ask that so and so, or this department,  or this entity oversee its implementation?  

1:06:55

And the reason I say that is, Victor  would remember this, but Mass. Families 

1:07:03

a long time ago, for eleven years, worked on  proposing a bill that did eventually pass after 

1:07:12

eleven years called Chapter 171, The Family and  Individual Support Law. And it passed. There were 

1:07:20

things under that law that need to be done. There  were seven agencies under the Executive Office of 

1:07:26

Health and Human Services that have to file annual  family support plans with the Governor's office, 

1:07:33

and it was the victory of all victories for us. But then, nothing. There's no mechanism for 

1:07:41

anybody to check if these seven named agencies  actually did file a report, and if those reports 

1:07:48

are actually being implemented. So just a lesson learned, that 

1:07:56

maybe we should think about that part, too. Like  not only recommend that these be adopted, but then 

1:08:04

where will it be held? And how can we know that  it's being followed through and implemented?  

1:08:11

And maybe that's just a theoretical question  never to be answered, but I just want to put 

1:08:17

it out there, because there's so much work  that went into this and these are such   excellent recommendations, I'd hate to see it  just get filed and forgotten, if you will.  

1:08:29

>> ALEX: I think that's absolutely right.  Definitely dive into the documents that   are the larger Microsoft Word document that are  getting circulated, and there what we're trying 

1:08:37

to do is exactly what you're recommending. And  you're right; I think that came out of the process   with the Commission, making it clear who the  stakeholders are is the only way to get it done.  

1:08:48

I think the upside to the process is, A, that  the Senate and the House understood that was a 

1:08:54

place where we needed more support in the  beginning; and B, we pretty swiftly found 

1:08:59

folks in the agencies who took up that work,  who have given great examples of how to find   the allies to make sure it gets implemented and  learned along the way how to be more specific.  

1:09:09

So take a look at those definitely and you have  my word we're going to try to work on crafting 

1:09:14

them as specifically as possible because it's a  lot of agencies; very easy for things to just get 

1:09:19

dropped and we don't want to see all this work get  turned around. So I really do appreciate that.  

1:09:26

Other thoughts on these? All  right. We'll keep on rolling.  

1:09:34

We have just a couple more for improving access to  records, and then we're going to look at pathways,   and then we'll come back and vote  and they're pretty much there.  

1:09:45

One of the things that we found in  the informant interviews that are in 

1:09:51

the report is that probate fees, the cost of  going to court and being appointed a guardian, 

1:09:58

even to someone who is long deceased, show that  you can have the right to view their records, 

1:10:03

is a very costly and lengthy process. The recommendation here is to waive the fee of 

1:10:11

that and simplify the filing instructions.  And to Lauri's point, the organization 

1:10:19

identified in that recommendation to help oversee  the implementation of that is the Mental Health 

1:10:25

Legal Advisors Committee which is a wing of  the Supreme Judicial Court of Massachusetts, 

1:10:32

because they're often the place where people  are referred to actually by Archives already 

1:10:37

for some of the legal issues. They're very aware  of this and know that the financial aspect is 

1:10:42

something that needs work on, and so does the  uniform filing instruction, because judges 

1:10:47

interpret this very, very differently. So it would place the responsibility   for that in the hands of people  who have run into those issues, 

1:10:55

work with living people now and know how to  legally develop language that will not negatively 

1:11:00

impact the living or create very serious probate  issues in contested situations, but will make it 

1:11:07

possible for people to access records that  they might want to have access to about a 

1:11:13

deceased loved one in a simplified form. Recommendation 14 is one of the most crucial 

1:11:21

things, which is that at present, many people  cannot find out if their loved one is buried 

1:11:28

in an anonymous grave in a state institutional  cemetery, because the record of their burial, the 

1:11:34

cemetery register or that relevant information, is  considered by the state to be a medical record.  

1:11:42

But in actuality, that is a record of  death, and it's very unusual that this 

1:11:48

interpretation exists, because records  of birth, death, marriage, divorce, 

1:11:55

are considered what are called vital records,  which in Massachusetts are widely accessible.  

1:12:02

The argument put forward is that we can't  say that they were buried in an institutional 

1:12:08

cemetery because that acknowledges  that they were at the institution, 

1:12:13

and that that's medical information. The problem  being that a death certificate can be accessed 

1:12:20

by anybody and will tell you that they were in  the institution, and it's freely accessible.  

1:12:26

So it's not actually a consistent  regulation and it is not something   practiced by the Department of Vital Records  which holds all the other vital records.  

1:12:36

This recommendation is to clarify, and it  specifies in the document which agencies would 

1:12:42

do this I think it's the Attorney General's office  clarify that these are vital records. It follows a 

1:12:49

very similar decision in Washington State where  a judge no, the Attorney General overrode the 

1:12:55

state archives, which was not allowing access to  these records, and said, these are vital records; 

1:13:00

they must be opened up. Those are our two last   improvements on records to recommend. Thoughts, concerns, issues, worries?  

1:13:11

Lauri, go for it. >> LAURI: I just   want to make sure I heard you right. So making sure, or recommending and seeing 

1:13:22

that these are considered vital records, you still  don't have a right to know where they're buried, 

1:13:29

only that they died? >> ALEX: No, you would   know their burial location. >> LAURI: That's part of the 

1:13:35

vital record? Okay, okay. Thank you. >> ALEX: Yeah. It doesn't tell you the 

1:13:42

exact spot all the time, but it would get people  close enough and there's actually a workable   process from there for them to be able to easily  locate their loved one in a lot of instances.  

1:13:56

Other folks' thoughts, concerns?  All right. We'll keep on rolling.  

1:14:07

Our last section, you are all heroes for sticking  with this. Thank you; I know this is a marathon.  

1:14:13

I promise the records part is the largest bucket  of things we're recommending, and we have already 

1:14:18

done the last session we talked a lot about the  Framework for Remembrance stuff, so other than the   museum, we'll have to come back and take a vote  on the general premise of those ideas but we got 

1:14:28

very far. There was general consensus that some  kind of apology from the State was a good idea. 

1:14:33

Some of these other ideas, public education  there was general support for. So we're in 

1:14:39

pretty good shape after we go through these. This last issue deals with the fact that there 

1:14:46

are records all over the place. Sometimes someone  dies, and their loved ones find that they worked   at a state institution, and they saved all these  records. Now they have them, and they don't know 

1:14:54

whether they can give them back or not, or  if they'll be prosecuted for holding them.  

1:15:00

There are private universities as we saw in the  report from CDDER, Harvard holds medical records 

1:15:06

from some state institutions. They've made their  way over there somehow, and that's not necessarily 

1:15:13

appropriate that those things are there. Local museum groups or historical societies 

1:15:21

have records. Everyone's in kind of a bad  spot of knowing what to do with them.   There's also the sale of these documents,  sometimes with individuals' medical information 

1:15:30

going online, which has been a national  issue recognized as a serious problem.  

1:15:39

And so these were recommendations informed  by the report on this. A lot of it taken 

1:15:45

up by Kate Benson, who has obviously  worked a lot around these issues.   So Recommendation 15 is to propose a temporary  moratorium on prosecuting people if they give the 

1:15:57

documents back. And this recommendation goes to  the Attorney General and to the Archives to devise 

1:16:03

a way where you could put out and say, if you  have these and you're worried about having them, 

1:16:09

please bring them, we need them, they belong at  the State, because someone is probably looking   for them; but we're not going to prosecute  you for having them. Because I think people 

1:16:20

right now are probably afraid of that. Recommendations 16 is that the Attorney 

1:16:26

General issue a cease and desist order to online  marketplaces, telling them that when they allow 

1:16:33

for the sale of institutional documents with  patient names on them, that that is a violation 

1:16:39

of those people's privacy, and that they shouldn't  actually be in possession of those documents which 

1:16:46

were originally State owned documents. The last recommendation is in some form or 

1:16:53

another for Archives to come up with maybe a nicer  word than "demand," but an outstretched hand to 

1:17:00

institutions and Archives around the state that  do possess these items and request this they turn 

1:17:06

them back over at this point because scattered  records we've seen in the record from CDDER were 

1:17:12

one of the biggest problems people faced, running  around the state trying to find where the records   were and not knowing that they were actually  held in private hands or something like that.  

1:17:23

That I want to emphasize has been a  source. I don't want to overuse this word, 

1:17:32

describing that runaround as being a traumatic  experience for them. They're trying to find   records on a loved one who is deceased, and  they know they're somewhere and can't find 

1:17:41

them and often they're in someone else's hands.  So it's getting them back in the right spot.  

1:17:48

Those are the three recommends. Again, opening  the floor to any concerns, comments, additions, 

1:17:54

contributions, things you've experienced or seen,  anything at all. And Sam, if you have anything you 

1:18:01

want to share on these recommendations, you  obviously are kind of ground zero for this   at Archives, so feel free to chime in, please. All right. I'll take that as consensus. Lauri, 

1:18:24

go for it. >> LAURI: I was just wondering, 

1:18:30

the first sentence, have the institutional  records returned to Massachusetts Archives, 

1:18:37

I wonder if there's a small prerequisite is it to  that document; that a preamble to that statement 

1:18:47

should be the Massachusetts legislature has  deemed these records property of the Massachusetts 

1:18:54

Archives? Because when you say return them to the  Massachusetts Archives, it almost implies they 

1:19:01

were taken from them, and perhaps they weren't. >> ALEX: That's a fabulous point. You sound like a 

1:19:07

well trained contract lawyer there, Lauri. Sam, can I turn to you for help with 

1:19:13

modifications on that later? >> SAMUEL: Yeah, of course.   >> ALEX: Fabulous, and get that language right.  That is great. Good eye. Cool. Cool, cool.  

1:19:25

All right, folks. Before we go into taking up  any kind of voting language and stuff, and that 

1:19:30

will take our last little bit, this is obviously  a huge amount. Just to contextualize this, this is 

1:19:39

a year's built summary of the many issues around  records that we're trying to address from these 

1:19:47

institutions and I think the goal is to really  make a positive impact in a way that helps people 

1:19:55

right away with some of the things that are most,  have been most painful and damaging to them.   I know it can sound really legalese, pieces of  paper which can quickly get to feel very removed, 

1:20:06

but there's a deep, deep, deep human connection to  this that the folks who work in this are hearing 

1:20:12

every day. Sam, I know you're getting calls  constantly from people who really, really,   really want a simple answer and are astonished  to find this is the landscape that exists and 

1:20:23

it's just too hashed to navigate. So we're doing  the hard work of trying to help remedy that.  

1:20:29

To that end, if there is anything you think  we're missing, anything that's worth further 

1:20:34

explanation within reason, given the time we  have over the weeks ahead, that strikes you 

1:20:39

based on this conversation about records access,  please, I would love to take that up now. And we 

1:20:49

can add it to the list and try to address it  in the coming weeks and see where it fits.   So if something's worrying you in  general, about this, please do say so.  

1:21:01

If something is missing, or something you want  emphasized, also? That could be a big part of 

1:21:07

this. Our goal will be to try to make it  so that 17 recommendations are presented 

1:21:16

in a way that is very clear and organized  so it doesn't feel overwhelming and get   people to tune out and will emphasize the key  steps that start the process and really make 

1:21:26

the most difference first. Lauri, please. >> LAURI: Not a concern; I would just say if I 

1:21:38

was a teacher and I had these recommendations in  front of me, I would get my gold stars out and I 

1:21:43

would give ten stars to No. 14. Just saying. >> ALEX: Sorry, I'm in a wash of paper here; 

1:21:53

where is 14? Hold on. Which was 14,  Lauri? Oh, clarifying the access to 

1:21:59

the institution [ ], absolutely. I want you to know that in our next   two meetings we're going to return to  the Framework for Remembrance stuff, 

1:22:08

do the same votes we're going to do in a moment  in the general spirit of things. We're also going   to look at the last section which is the cemetery  section specifically. And I do have in the notes 

1:22:18

for the report committee or working group  that your comment also, Lauri, on modifying 

1:22:25

the law on experimentation and autopsies,  the medical experimentation stuff on folks 

1:22:32

who are deceased from institutions. And so that  will be reflected in there as well as kind of a   related issue to the cemetery records overall. All right. Let's do this. Let's go back to our 

1:22:44

earlier slides. We'll roll through things. I talked with the CDDER folks a little bit 

1:22:51

about this, some kind of language this is rough  language, so please, if someone has ideas for how 

1:22:57

to work on this, what I would be looking for is a  motion to endorse the importance of the strategies 

1:23:05

presented page by page. We can group them however  we want. While not endorsing the exact wording. I 

1:23:13

understand that we have to work on the wording,  but what this would be is our general sense that   the Commission approves or does not approve of  moving forward with specific recommendations.  

1:23:23

So I know this will require a little  back and forth and some things like that,   but if we could go back to, whichever the first  slide on these was yeah, there we go and we were 

1:23:35

to just start with these three recommendations. Is this a reasonable chunk, folks? Do you think 

1:23:46

we should be voting on everything? Should we  be voting in different chunks? Either way, 

1:23:52

we've got to vote on everything; it's just  how we do it. You should see me with putting   furniture together; it's not a pretty sight.  So organizing these things is not my forte.  

1:24:01

Bill, you look like a man who organizes things. >> BILL: I'm moving, you could see my desk 

1:24:07

and I could refute that totally. But we've gone through everything. 

1:24:13

You've painstakingly gone through  everything. I think we can do it as   a group. There was good discussion.  I don't think you have to repeat 

1:24:20

the same discussion, is my opinion. >> ALEX: Other thoughts on that? I like 

1:24:27

your deflection of painstaking rather  than just painful; so thank you.  

1:24:36

This would obviously be with the removal of Item  No. 9 which I know we've got to get the language   on. So we could say excluding No. 9. >> ALEX: This is Alex. I want to tell you 

1:24:51

this. If a person gets a copy of the records  they should not be copied by anybody. They 

1:25:00

should follow the rules it should be known  that these people that get the records, 

1:25:07

they want to know where their people come from. So I would say make it as easy as possible to make 

1:25:16

sure that people understand why the people  want their records, and why they should have 

1:25:23

them. Because if they were in their shoes and they  were in an institution, they'd understand why.  

1:25:32

Thank you. >> ALEX: More than any   of us could possibly say, you hit it right on the  head. Thank you, Reg, and thanks for yesterday. 

1:25:42

It's always so good to be with you. >> And Victor, enjoy your retirement.  

1:25:50

>> ALEX: Yeah, damn straight! All right. Let's do this: If I could have some voting 

1:25:58

language from folks on the recommendations  here with the exception of No. 9, that is 

1:26:05

worded in some nice way that I lost, right  in front of me. But if someone has some yeah, 

1:26:12

Vesper, go for it, what have you got? >> VESPER: Would this be with the purpose   of making a motion, for us to vote? So I'm willing to make a motion that 

1:26:23

we vote on these recommendations with  the exception of Recommendation 9.   >> SAMUEL: I'll second the motion. >> ALEX: Roll call vote? Any discussion on that? 

1:26:44

Any modifications to that? Drew, please. You're muted; sorry.  

1:26:52

>> ANDREW: Sorry. I'm just so just to clarify,  we're voting to approve the recommendations, 

1:26:59

correct? We're not just voting to  vote on the recommendations?   >> ALEX: Correct. >> ANDREW: So I will agree to 

1:27:06

approval of the recommendations. >> ALEX: No, that's a good sorry,   I'm processing it, too. All right, good. So let's do a roll call vote, then, I guess.  

1:27:18

>> CHRISTINE: Thank you, Alex. This is  Christine from CDDER and I'll read out 

1:27:25

names by alphabetical order by last names,  and when your name is called, please respond 

1:27:30

with yes, no, present, or abstain. So I'll begin with Elise Aronne.  

1:27:40

Kate Benson? Sister Linda Bessom?  

1:27:49

Reggie Clark? >> REGGIE: Yes.   >> CHRISTINE: Thank you, Reggie. James Cooney?  

1:27:56

>> JAMES: Yes. >> CHRISTINE: Samuel Edwards?   >> SAMUEL: Yes. >> CHRISTINE: Anne Fracht?  

1:28:03

>> ANNE: Yes. >> CHRISTINE: Alex Green?   >> ALEX: Yes. >> CHRISTINE: Bill Henning?  

1:28:09

>> BILL: Yes. >> CHRISTINE: Camille Karabaich?   >> CAMILLE: Yes. >> CHRISTINE: Andrew Levrault?  

1:28:16

>> ANDREW: Yes. >> CHRISTINE: Evelyn Mateo?   Lauri Medeiros? >> LAURI: Yes.  

1:28:24

>> CHRISTINE: Vesper Moore? >> VESPER: Yes.   >> CHRISTINE: And Brenda Rankin? >> ALEX: Folks, thank you. That's momentous. 

1:28:40

That's a huge amount of our work right there. Sam,  the Report Committee, and I, and obviously Anne 

1:28:46

and Kate, will start working through these things  and refining them and getting them into shape the 

1:28:52

next month. So you have our word on that. And I think at this point we go back to our 

1:29:00

fearless leader, Anne. We're at the wrap up,  I think, a little bit ahead of schedule.  

1:29:06

>> ANNE: I'd like to thank everyone that's  here. We look forward to seeing you at the 

1:29:12

next full Commission meeting on May 8th. We'll  be sending you information about the meeting.  

1:29:21

I want to make sure that works  for everybody. Speak now.  

1:29:27

If members have any questions before  then, you should feel free to contact 

1:29:33

CDDER or Alex or myself or Kate. If there's no other items to discuss, 

1:29:43

can we vote to adjourn the meeting? Please  unmute yourselves for the roll call vote.  

1:29:54

Do we have a motion to adjourn the meeting? >> ANDREW: I'll make a motion to adjourn. 

1:30:01

Sorry, this is Andrew Levrault. There's definitely a meeting on May 8th and   we're holding the meeting on the 15th as well? >> ANNE: There's a meeting on the 15th on the 

1:30:10

15th as well. >> ANDREW: Thank you. I'll   make a motion to adjourn? >> BILL: Second.  

1:30:17

>> ANNE: Thank you. >> CHRISTINE: Thank you. This is Christine 

1:30:28

Roa from CDDER. So once again, I'll be reading out  members' names in alphabetical order by your last 

1:30:34

names; and again, when you hear your name, please  respond with yes, no, present, or abstain.  

1:30:41

Elise Aronne? Kate Benson?  

1:30:47

Sister Linda Bessom? Reggie Clark?  

1:30:53

>> REGGIE: Yes. >> CHRISTINE: Thank you.   James Cooney? >> JAMES: Yes.  

1:30:58

>> CHRISTINE: Samuel Edwards? >> SAMUEL: Yes.   >> CHRISTINE: Anne Fracht? >> ANNE: Yes.  

1:31:03

>> CHRISTINE: Alex Green? Bill Henning?  

1:31:10

>> BILL: Yes. >> CHRISTINE: Camille Karabaich?   >> CAMILLE: Yes. >> CHRISTINE: Andrew Levrault?  

1:31:17

>> ANDREW: Yes. >> CHRISTINE: Evelyn Mateo?   Lauri Medeiros? >> LAURI: Yes.  

1:31:23

>> CHRISTINE: Vesper Moore? >> VESPER: Yes.   >> CHRISTINE: And Brenda Rankin?  

1:31:31

Did I miss anybody? >> 

1:31:40

ANNE: Thank you. And meeting adjourned. >> Thanks, everyone.   >> Best wishes, everyone.  Congratulations and good luck.  

1:31:50

>> Good luck, Victor. >> VICTOR: Take care, everybody.  

1:32:00

>> JENNIFER: That was great!  I'm sorry I missed that typo.  

1:32:13

>> COMPUTERIZED ANNOUNCER: Recording stopped. (End of meeting.)