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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
0:49
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
1:41
follow the discussion. If you need help turning on these captions, please let us know.
1:49
We ask that people speak at a non rushed pace and provide yourself with a brief pause for the CART
1:56
transcriber to write what you have said. We ask that you speak with as few acronyms
2:04
as possible. Doing so will help all participants to understand
2:09
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
2:59
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
4:53
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
13:20
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
15:30
we feel comfortable yet trying to characterize where everybody is at, and it would be really
15:35
helpful to know just how folks feel about it. So to do that, CDDER has set up a cool new
15:43
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
16:02
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,
18:38
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
18:52
other would also have me be able to access it. So I feel like both have access points that one
19:01
or the other would not have. So I don't know if it's an idea to go with one while simultaneously
19:08
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
19:24
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
19:37
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,
19:56
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
20:57
a community environment where people are engaging with this history in some type of way, that could
21:04
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
21:19
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
21:41
in the disability museum and historical space. >> ALEX: And can I ask just a follow up question
21:50
clarifying on that? Have you heard conversations or do you envision then some kind of financial
21:56
support or support in some way? If these things were to be exhibits or the use of
22:02
existing spaces and supporting those to focus in this direction, like, yeah, what have you
22:08
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,
22:21
you would want someone to oversee the operations, so you would need a few FTEs,
22:27
at least, full time employees, on site doing that work. You would need support for consultants
22:38
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,
22:51
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
23:03
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
23:13
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,
23:39
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
23:47
group like us to look into something and find out more about it and then give it instructions.
23:54
They send it to be studied. There are lots of it doesn't have to be legislators who do that.
24:03
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
24:17
be in a way where we can help recommend how to set the things in motion to make it succeed?
24:24
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
24:33
different. And there's a lot in between there. Like Vesper was saying, one way to support
24:40
the component of an idea is to support existing spaces with something in a way that they can use
24:47
this history; but even there, probably we need to say, who starts to get the ball rolling?
24:52
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
25:36
looking at right there and the resources or the money, which then leads to me liking your point,
25:50
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,
26:02
but something that says let's say we embrace it. I don't want to presume. I think most people see
26:10
these positives. This idea was embraced, however, recognizing was embraced, so can we embark on a
26:18
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
26:31
goes six feet under after one year. A feasibility study is an actual document, so somebody shall be
26:40
charged to look at this whoever it is with some specifics specificity is the word. That might be
26:50
the way to go. So, thank you. >> ALEX: Excellent.
26:55
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
27:03
why we're doing this meeting and two more. This seems like one of the areas that's going
27:08
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
27:14
report folks, CM Edwards has offered a lot of good thoughts on this, and I think we can try
27:20
to process this into a couple different options on language and then recirculate it and start to use
27:26
those as different ways to come at this issue. Just understanding that it's a big challenge, and
27:33
it's a right place to be focusing that energy. So if you didn't speak and you want to share your
27:40
thoughts on that, please email them to the CDDER crew at the SCSI email address. And you can say,
27:46
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.
28:01
All right. I think we're going to move on to some of the other recommendations.
28:07
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
28:21
proposed recommendations about records and records access.
28:27
So we have four groupings that we've taken the many recommendations and kind of put them
28:34
into. There are 17 recommendations overall, and that makes sense,
28:40
frankly. We've grouped them as recommendations for changes to management, preservation,
28:48
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.
28:57
Recommendations to improve access for former patients and residents or their families and researchers. And recommendations to create pathways
29:07
for people who have these records out and about, back to Lauri's point about Martha Ziegler,
29:14
folks who held onto documents and may be afraid to turn them over, or other institutions that have
29:20
them and somehow came into possession of them; how do we facilitate, how do we make it possible for
29:26
people to get those documents back into the kind of handling of the State in a responsible way?
29:34
So, let's start with the changes to management, preservation and access rules.
29:43
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
29:53
CDDER folks, that right now, some records are held by some agencies, where if they try to
30:02
get them over to the right place, the law says they actually have to destroy them instead.
30:09
And so anything else that we do probably needs to begin with this first recommendation, which is a
30:16
moratorium, which means stop, on destruction of records. And what this would mean is we ask the
30:24
State to stop destroying any institutional records that might be scheduled for destruction until
30:31
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
30:45
way of forward sorry, I'm grabbing a pen if we should discuss that as a starting place and move
30:52
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
31:03
any objections to that? Sam? >> SAMUEL: Not objection, per se,
31:13
but the moratorium on the destruction of records I think needs more clarity, because I think that's
31:20
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
31:34
term. I'm thinking of things like, you know, like just day to day administrative records. So
31:43
I think having more clarity around exactly what we do not want destroyed would be helpful.
31:51
>> 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.
31:59
And some of it may be who decides what that moratorium length looks like, and who has the
32:07
power to lift it at some point, because it may be too hard to separate out which documents are where
32:13
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
32:27
case, please say so, or modifications, things you're concerned about it, things you'd like to
32:32
be taken into account and maybe have us just look into it and get back to you with a few answers?
32:45
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.
32:59
It automatically made me think of and I'm sorry, I can't think of his name the fellow on PBS who does
33:06
that show, Finding your Roots, right? I wonder if there is such an entity that could maybe
33:13
advise us on what would be really important to preserve, and perhaps what could just go
33:21
straight to digital. You know what I mean? Because I think we might have good ideas about
33:28
what that is, but from the perspective of somebody who does this, who researches preserved records,
33:36
and wishes that certain things were preserved and they weren't, or who would know what would
33:42
be best to ensure is reserved first. >> ALEX: Good. So that may move us
33:51
actually to the next recommendation, and a thought about how to handle that. The next recommendation is to identify key record subcategories,
34:00
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,
34:08
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
34:21
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
34:31
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,
34:44
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?
35:09
Is it an MOD thing, is it MDDC, outside organizations, MAMH?
35:15
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.)