transcript

transcript  Special Commission on State Institutions (SCSI) Meeting: March 21, 2024

Transcript

0:00

>>JEN: Thank you. I'll start recording now. >>MATT: Hello, everyone. I'd like to call  

0:06

this meeting of the special commission  on state institutions to order.. My name  

0:15

is Matt Millett. My colleague Evelyn should be  joining us in a second, as the other co chair. 

0:25

I usually like to let everyone know the  commission meeting must follow Open Meeting Law. 

0:31

A vote taken will be during roll call,  we'll call your name in the roll call.  

0:39

Please be sure to mute yourself. Only unmute yourself when you're speaking. 

0:46

Before speaking, please state your name  which I did not do. Sorry about that.   So everyone will know who is talking. We hope  that everyone took a moment to view the agenda.  

0:56

These items will be discussed today I believe I saw Evelyn jump on. 

1:04

To make sure everyone can participate, we  have CART services to support our meetings  

1:10

today. These are captions to help people follow  the discussion. If you need help turning this  

1:16

on please let us or Jen or Emily. We ask that  you not speak in a rushed pace, which I am not  

1:25

doing right now. I'm sorry. Please pause for the  CART to transcribe to write what you have said. 

1:35

We ask that you speak with  few acronyms as possible. It   will help all participants to understand  important information that is shared here. 

1:47

Evelyn and I will try to remind folks of  these items I just mentioned, if needed  

1:53

during this meeting and to keep us on track Notes will be made available based on what we  

2:00

talk about today. The meeting is being recorded  and the video is available on the commissioner's  

2:09

page, Mass. page, on YouTube. >>EVELYN: I'm sorry (laughing). 

2:52

>>EVELYN: Is it my turn? >>MATT: Your turn.  >>EVELYN: Welcome. Did we do the welcome already? >>MATT: Yeah. We're at introductions if you wanted  

3:03

to do the introduction paragraph. >>EVELYN: I'm sorry. 

3:15

>>MATT: It's all right. >>EVELYN: Good afternoon,   everyone. We would like to call this meeting of  the special commission on institution and order. 

3:26

My name is Evelyn Mateo >>MATT: Evelyn, this is Matt. Sorry about that. 

3:33

You may want to introduce a new  commission number on the second page.  >>EVELYN: Okay. Thank you. Sorry, guys. Since  our last meeting we have a new commission  

3:43

member appointed, Sister Linda Bessom, who is  a family member of a current resident of the  

3:54

Hogan developmental Center. Sister Linda, would you  

4:00

like to introduce yourself? >>LINDA: There we go (laughing). 

4:11

Yes. My, um I am the guardian of my sister  Mary, who has been at Hogan since it began,  

4:24

so many, many years, many, many years ago. And, um, I'm open to learning as well as seeing  

4:33

what we can do and work together on improving the  quality of life at all of our state institutions.  

4:45

Definitely respecting the, um, individual, basic  human rights and human dignity of each person. 

4:54

Thank you! Glad to be here. >>EVELYN: We also have Julia O'Leary from Mass.  

5:04

Office of Disability, who will be attending the  meeting today as Mary is unable to attend today's  

5:14

commission meeting. Welcome, Julia. Julia.  >>: Hi, good afternoon . >>EVELYN: We would invite Emily from  

5:26

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

5:36

>>EMILY: Thank you so much, Evelyn. I'm  here to recap especially since we have a  

5:42

new commission member and some guests with  us today. So at our last meeting, our team,  

5:49

which is the Center for Developmental Disabilities  Evaluation and Research introduced ourself and  

5:55

we talked about how we're going to support  the work of the commission going forward. 

6:00

The commissioners agreed to form three working  groups to focus on details of what they're tasked  

6:07

with doing. There's one working group that's going  to focus on the existing records from institutions  

6:14

and the request process for those records. There's a second working group that will  

6:19

focus on where people are buried, who  died while living in institutions. 

6:26

And a third working group that will look  at a framework for public recognition,  

6:31

which might include services or a memorial. The commissioners also discussed the "The Boston  

6:39

Globe" article about papers that were  left at the Fernald institution after   it closed. These papers had details about  people who lived there and their health. 

6:49

The commission voted to draft a letter of inquiry  about how this happened and what will happen going  

6:55

forward. We'll talk about that letter today. CDDER also shared with commission members  

7:02

that we've learned so far in each of the  three areas of focus of the working groups. 

7:09

We talked with commission members about  the need to define the word "institution"  

7:15

for their work and to clarify what will  and will not be included in the work. 

7:22

We also discussed some of the things we plan to do  to support the commission and got input from the  

7:28

commissioners on the next steps of work. And that's my summary. Thank you.  

7:34

>>MATT: thank you Emily this is Matt Millett  again. Before we dive into this afternoon's  

7:42

session, we had to vote on minutes for  our last commission meeting back in June. 

7:48

Draft copies of the minutes were e  mailed to commission members last week. 

7:54

Does any members have suggestions  to changes to the minutes? If not,  

8:02

we can proceed with the votes. As usual, like usual,  

8:12

we will be conducting a roll call vote. So please everyone unmute yourselves. 

8:19

Evelyn will call names to do a roll call vote  roll call vote I can't talk right now. Sorry. 

8:27

Do we have motion to approve the minutes? >> : So moved.  >>MATT: Alex, will you say who you are? >>Alex : Sorry. So moved. 

8:35

>>MATT: That was you, right? Sorry. >>: Alex That's correct. Thank you. 

8:42

>>MATT: Do we have a second? >>ANNE: This is Anne, I second. 

8:50

>>MATT: I will call the I can't talk  right now. Sorry. I will call on Evelyn to  

8:56

call roll call vote. >>EVELYN: Elisia.  >> : Hi is it Elise? >>EVELYN: Elise. 

9:08

>> : Okay. Elise is here. Say hello, Elise. >>: Hi. 

9:18

>>EVELYN: Kate Benson? >>KATE: Yes.  >>EVELYN: Sister Linda Bessom. >>LINDA: Okay. Because this is my first meeting,  

9:27

I am going to abstain (laughing). Thank you. >>EVELYN: Reggie Clark. 

9:36

>>REGGIE: Yes (sounds like). >>EVELYN: Ann. 

9:45

Alex Green? >> :Alex: Yes.  >>EVELYN: Rania? Kelly? >> : Rania: Yes, yes. 

9:54

>>EVELYN: Andrew. >>ANDREW: Yes.  >>EVELYN: Vesper? >>VESPER: Yes. 

10:02

>>EVELYN: Julia? >> : I wasn't at the last   meeting so I also abstained. Can you hear me? I'm also going to abstain because I wasn't at  

10:14

the last meeting. >>EVELYN: Brenda? 

10:22

Conor? >>: Um, (inaudible). 

10:28

>> : Okay. Did you approve the minutes? >> BRENDA: Yeah.  >> : Okay. Thank you. >>EVELYN: Conor? 

10:41

Um, Mary Louise. Matt? >>MATT: I vote Yes. 

10:52

>>EVELYN: And myself, I vote yes. Did we miss anyone? 

10:59

>>MATT: Thank you, everyone. The votes  minutes are approved. As a reminder a  

11:08

copy of the approved minutes and all of  the materials from commission meetings   are available on the commissioners web page. >>EVELYN: We would now like to invite CDDER to  

11:30

share updates on the PowerPoint templates that  commissioner the commissioner's YouTube channel. 

11:39

>>CHRISTINE: Thank you, Evelyn. Good afternoon, everyone. 

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My name is Christine Roa, and  I'm a project manager for CDDER.  Today I'll be showing three PowerPoint template in  local samples that we created for the commission. 

11:57

The first sample, which is on the screen,  has a white, yellow, and blue color scheme. 

12:03

The background color of the slide is mainly  white with a yellow shaped design applied to  

12:10

both sides of the slide. The slide text is blue.  It also has a logo located on the bottom  left hand side of the slide. The logo is  

12:20

in the shape of a rectangle. Inside the rectangle it has   the acronyms for the commission, the  letters SCSI, in large yellow text. 

12:30

And next to the acronym, it has  the titles of the commission.  On the bottom of the rectangle, it says  the word "Massachusetts" in blue text. 

12:43

The second sample also has a white,  yellow, and blue color scheme. 

12:49

More than half of the background color of the  side is blue, while the other half is white. 

12:55

The text in the blue half of the  slide is white, and the text on   the white half of the slide is in blue. The logo, which is located on the right hand  

13:04

side of the slide is a blue rectangle, and inside  the blue rectangle is the title of the commission  

13:12

in white text. On top of that rectangle, there is  a yellow and white icon shaped like a teardrop. 

13:21

Next to that icon it has the word  "Massachusetts," and underneath it  

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it has the acronym for the commission. And just to mention that the teardrop is   in yellow and white, in case I forgot. The last sample, and the third sample,  

13:39

is very similar to the first one. But instead  it has a white, red, and blue color scheme. 

13:47

Once again, the background is  mainly white, and there is, um,  

13:52

red shapes designed on the side of the slides. The logo found on the bottom left hand corner of  

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the slide has the commission's acronym in large  blue font. And next to that font it has the word  

14:05

"Massachusetts" spelled out. And underneath the  word "Massachusetts" it has the full title of  

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the commission. Thank you.  >>EMILY: And just as a reminder from our last  meeting, these are three examples that we had  

14:21

put together as commissioners wanted to see how  they might brand the commission different than the  

14:27

generic template that was used for PowerPoints for  the meetings, that is a state template. You don't  

14:35

need to have your own branding if you don't wish  to have it. And you can tell us that you like one  

14:41

of these designs, you can tell us that you like  none of these designs and that's okay. This was   just put together as a service to give you some  examples of what a template could look like for  

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your commission if you'd like to have your own. >>EVELYN: Is there any discussion of the  

15:02

PowerPoint templates? [ Pause ] 

15:27

>>CHRISTINE: Okay. If there's >>RANIA: My question is are we   going to be voting on this now? Whether we want  a logo I just wanted to get clarification on what  

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we're going to do with this information. Sorry, this is Rania Kelly. I forgot  

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to say my name (laughing). >>EMILY: This is Emily. We  

15:52

were hoping to create some space just  for discussion so commissioners can   say if they like the idea of having a  template. If they'd like the templates,  

16:01

if they'd like to change something. So this  would be a period for commissioners to talk  

16:06

with each other about what they've seen. >>RANIA: Okay. This is Rania Kelly again.  

16:14

I'm indifferent of whether we have a brand or not.  However, out of the three, the one I personally  

16:23

prefer is the one you have up for the visually  impaired specifically because I can't remember  

16:29

what the first one looked like mostly because of  contrast reasons. Usually yeah. If someone has low  

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vision, I think the third logo is most optimal for  those who have a low vision, because of contrast.  

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Usually yellow against white does not work.  Yellow against, like, a black is high contrast. 

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But, um so I think visually the yeah. With this  one, I think it's a little hard to read. Like,  

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right now I'm looking at it on my  phone, and I'm struggling to read,   even though I don't have visual impairments. But  if I did, I think I'd struggle with that logo. 

17:08

The second one, the tear I actually like  this logo. My only issue with it, again,  

17:15

is the yellow against the white background for  those who have, um don't have great vision. That  

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would be difficult for them to see. [ Children's voices in background ]  >>RANIA: I just personally prefer that one  just because A it has no symbol and B it has  

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the highest contrast. >>Evelyn: Linda? 

17:43

>>LINDA: Thank you. I hope I'm unmuted. Let's see. >>Evelyn : Yeah. 

17:51

>>LINDA: Yeah. I was wondering,  um, why the teardrop.  Where does that come from? And if you had not said that it was a teardrop,  

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I would not have known that, because it looks  more like a flame to me (laughing), so ... Yeah. 

18:11

Okay. >>CHRISTINE: So our designer, um,  

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didn't really have any justification as to why  they chose that icon. And I do agree with you,  

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it does look a little more similar to a flame. But it is in the color of yellow and white. 

18:30

But we can, um, make that simple  color adjustment that Rania stated. 

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>>LINDA: Okay. >>EVELYN: I like the third one (laughing).  >>LINDA: Yeah. >>EVELYN: Just, like, white it sticks out,  

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it pops up, and it's easy to see from any aspect. >>VESPER: Sorry. I was going to say hi,  

19:04

Vesper speaking. I was going to  say I like the third one as well.  And, um, if if there was significance or reason  for the second one having that teardrop and/or  

19:16

flame, that we end up deciding that we enjoy  in any way, we could incorporate it in the  

19:21

third one with a different color scheme. But I think the layout for the third one  

19:27

is is personally my favorite. >>: Mm hmm. Thank you. 

19:36

>>LINDA: Me too (laughing). >>EMILY: Would you like us to  

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try to incorporate that flame or teardrop in  a darker color into this third template and  

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come back to you, or would you like  to just pick a template as it is? 

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>>RANIA: This is Rania Kelly. I would  stay away from iconography. Like,  

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symbols like the teardrop/flame,  because I also thought it was a flame. 

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Just because (a) it does create confusion and (b)  I also hesitate to brand ourselves with imagery,  

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because we don't know where we're going  to go with memorializing the institution. 

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Branding branding may come out of  that. So I'd rather stay simple with  

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just text. But that's my personal preference. >>EMILY: Okay. I would this is Emily again. I  

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would just ask our chairs whether they would  like to hold a formal vote on this or not. 

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>>EVELYN: I mean, if everybody else would  like, we can vote. If not, we can wait  

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until the next meeting. Matt? >>MATT: Hi. This is Matt. 

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I would like to be a little different from the  regular website. Personally I like the third one,  

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with the pink background. And I don't care for the  flame either. I like plain and simple. But that's  

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my opinion. Um, does any of the members have any  opinions? Elisa, Kate, Alex? Drew? Dave Coner? 

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We don't have to change it,  but if we want to, we can. 

21:53

>>ANDREW: This is Andrew Levrault with  the DPPC. I'm really indifferent. I'll   support any of the templates that people  agree to. I do I do like the third one. 

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>>EVELYN: So would we vote, Matt?  Could it be a vote today or not? 

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>>MATT: Someone would have to make  a motion first, I believe, that  >>EVELYN: Mm hmm. >>MATT: Reggie, how do you feel about this? 

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>>REGGIE: It doesn't matter  too much, the template. 

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I would like mine I would like it  very simple, like the rest of what,   you know you know, keep it keep it  simple until we know where we're going. 

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>>LINDA: Mm. >>MATT: Does anyone want to make a motion   to change one of the templates or we can just I  don’t know the right word- we can push it back to  

23:09

next meeting to have more time to think about it? >>VESPER: Vesper speaking. I'll make a motion. 

23:20

>>MATT: Oh, this is Matt speaking, sorry. Vesper, what motion would you like to make?   To accept the third one or to push it back? >>VESPER: I'd like to make a motion to  

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formally vote on the third one. >>MATT: So the motion would be to  

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vote on the third slide, which is the pink,  basic one, to have it as a new template. 

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Do I have a second? >>KATE: This is Kate. I second. 

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>>MATT: Thank you, Kate. So I'll do a roll call vote.  Yes, we'll accept the first slide, which is,  Christine can you describe it again, I'm sorry. 

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>>CHRISTINE: I'm sorry? >>MATT: Can you describe   the slide, what it is, how >>CHRISTINE: Sure. It has  

24:16

a white, blue, and red color scheme. The white background it has a background  

24:23

with predominantly white color. And on the side  there are some shapes in red on both sides of the  

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slide. The text is blue font. >>MATT: Thank you.  >>CHRISTINE: You're welcome. >>MATT: So, Evelyn, do you want to do a roll  

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call vote on the names, please? A yes or no vote. >>EVELYN: Elisia, is that how you say it? 

24:46

>>MATT: Elisa Arrone she's here, right? >> Elise’s support staff: Yeah. Sorry  

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my hand is far from the mute button.  Elise, would you like this background?  >>ELISE: Yeah. >>Elise’s support staff : Okay. 

24:59

>>EVELYN: Kate Benson? >>KATE: Yes.  >>EVELYN: Sister Linda Bessom? >>LINDA: Yes, please. 

25:08

>>EVELYN: Reggie Clark? >>REGGIE: Yes.  >>EVELYN: Anne Fracht? >>ANNE: Yes. 

25:17

>>EVELYN: Alex Green. >> Alex: Yes.  >>EVELYN: Rania Kelly. >>RANIA: Yes. 

25:25

>> EVELYN: Andrew Kelly? Andrew: Yes  >>EVELYN: Vesper? >>VESPER: Yes. 

25:32

>>EVELYN: Julia O'Leary? >>: Yes.  >>EVELYN: Brenda Rankin? >> Brenda’s Support Staff Would  

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you like that background. >> Brenda: Yes.  Brenda’s support staff: Okay. Thank you. >>EVELYN: Conor Snow? 

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>>CONOR: Yes. >>MARY: Mary Louise White? 

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Matt? >>MATT: I vote yes.  >>EVELYN: And myself, yes. >>MATT: Thank you, everyone. 

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So we'll have that slide up at the next  meeting. And CDDER take care of that,  

26:24

please, thank you. Since our last meeting  of the special commission, there have been 

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>>CHRISTINE: My apologies, Matt, but I do  have to give an update on the YouTube channel.  >>MATT: Oh, yup. >>CHRISTINE: My apologies. Just so everyone knows,  

26:43

CDDER has created a YouTube channel for the  commission. And we've moved all videos that  

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were previously hosted by the Massachusetts Office  Disability to the commission's YouTube channel.  

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All full commission meetings that have been  recorded can be found on the commission's website   or on the commission's YouTube channel. Thank you, Matt, and my apologies  

27:03

for interrupting. >>MATT: No. My apologies.  It's not the template. Sorry about that. >>CHRISTINE: You're fine. 

27:12

>>MATT: Since the last meeting, the  special commission, there have been   very important news articles that have come  out about institutions in Massachusetts. 

27:21

Some of the articles are about Bridgewater State  Hospital, which is a correctional institution  

27:27

for people with mental health conditions.  There were three articles in "The Boston  

27:33

Globe" in March related to the conditions  at, Tewksbury State Hospital, including  

27:39

how patients at the facility were being treated  and the conditions of buildings at the facility. 

27:48

The Disability Law Center recently released a  monitoring report about the lack of progress  

27:54

for improvements at the facility in Bridgewater.  They recommended the operations of the facility be  

28:02

transferred from the Department of Corrections  into the Department of Mental Health. 

28:10

There was an article that discussed how the  conditions at Tewksbury State Hospital had   been affected by the number of patients  that had transferred from Bridgewater. 

28:23

Tewksbury is another state hospital that has a  section for people with mental health conditions.  

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A copy of the articles were emailed to members  on Tuesday afternoon. Hopefully everyone had a  

28:36

chance to read it. We wanted to share the articles  with the commission and see what people thought. 

28:46

Are there any things that Commissioners want  to discuss about the about Bridgewater and   Tewksbury state hospitals? Does anyone  have anything to say about the hospitals? 

29:09

>>Alex Green : This is Alex. I would like to  say for folks who may not know what Bridgewater  

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State Hospital is, in particular, because  it is a correctional facility right now,  

29:27

so it could be seen as a kind of prison and  it is for people who have been sentenced for  

29:34

crimes or held by the government for crimes. But it does have a lot of ties to the other  

29:41

state institutions that we are looking at. So a few months ago, when Emily said we should  

29:48

be considering and thinking about what we want to  define as an institution, um, this one is going  

29:58

to be a little bit weird for us to look at, but  in its history, it actually took a lot of people  

30:07

in who originally were at the state schools, like  the Belchertown school, Wrentham or the Fernald,  

30:14

and also at state hospitals like the Metropolitan  State Hospital or the Northampton State Hospital. 

30:20

So this is kind of part of that history and part  of that network. So I just wanted to share that. 

30:28

Otherwise just the articles make me  very, very, um, sad and upset to read. 

30:35

>>MATT: This is Matt. Thank you, Alex. Anyone  else want to let us know how they feel about that? 

30:51

[ Pause ] >>MATT: Well, if not, we'll move on. 

31:01

Evelyn, please. >>EVELYN: Since the last   meeting of our special commission, there were also  developments regarding the Fernald State School. 

31:15

There was an article in "The Boston Globe" at  the end of February that discussed the desire  

31:21

of the people who live in lived and worked at  Fernald to have a say in what should happen  

31:30

to the grounds, as it was redeveloped. There was also an editorial written by  

31:39

the globe editorial published in "The Boston  Globe" on January 30th as the follow up to  

31:48

the January 10th article that talked about  the City of Waltham letting the buildings  

31:57

on the former grounds of the Fernald state  school to fall into disrepair due to neglect. 

32:08

There was a radio interview on WGBH regarding  access to the records of former residents of  

32:18

the state school by family members. A copy of the articles and link to  

32:25

the radio interview was e mailed  to members on Tuesday afternoon. 

32:32

Hopefully everyone had the chance to read it. We want to share the articles with the commission  

32:39

and what people thought. Reggie and Alex were  

32:46

quoted and interviewed for the pieces. So I'm not sure if they want to share anything. 

33:07

Do either one want to share something? >>REGGIE: Well, as I said before,  

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you know, it's important that they that they  do something for the people that were there,  

33:25

because I feel as though that we were the ones who  were there, and we should have the say families  

33:35

that they their loved ones there should have  the say how they want it and what should happen. 

33:41

>>LINDA: Yeah. >>REGGIE: Not the city, not the state.  

33:49

But the people that lived there. They should  have an article there or museum to show people  

33:58

what it was like, talk about the history of it,  so people could understand what it was all about. 

34:08

Thank you. >> Alex: This is Alex. I'll say Reggie  

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does it better than me every time I'll stand  by Reggie's comments. So I have nothing to add. 

34:27

>>EVELYN: DDS also sent out a notice  about the data breach at Fernald. A  

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copy of the press release was sent to the  commissioners, members, on March 12th.  

34:44

Hopefully everyone had a chance to read it. Emily and CDDER has some things she wanted  

34:54

to talk about regarding the press release. >>EMILY: This is Emily. Thank you, Evelyn.  

35:02

I just wanted to take a moment to explain what was  in the notice from DDS and why it was sent. So on  

35:11

March 11th, DDS released this notice. It is required by the HIPAA law,  

35:18

otherwise known as the Health Insurance  Portability and Accountability Act,   that when a group who's responsible for people's  health information learns that it has not been  

35:29

protected as required by the law, they have  to issue a notice. And that's what DDS did. 

35:36

In the notice, DDS confirmed that there  were records that were not secured, that had  

35:43

people's names, dates of birth, diagnoses,  or the names of the conditions they had,  

35:51

other medical information, information  about the medications or prescriptions  

35:56

they took. And other treatment information. There may have also been Social Security numbers  

36:03

on the records, but it was hard to determine. The notice said that DDS doesn't know of  

36:09

any times that this information was  used in ways that it should not be. 

36:14

It said that people who lived at Fernald should  watch their accounts, their bank accounts,  

36:20

for any changes they don't recognize and call  their bank if they see anything like this. DDS  

36:27

also gave a phone number for people to call  with questions. They gave an email address and  

36:35

a mailing address that people can use to talk  to the DDS privacy officer. They also shared a  

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website with more information. >>EVELYN: Thank you, Emily. 

36:50

We also have Victor here from DDS, who can  provide us with an update on everything  

36:56

DSS DDS is doing to help. >>VICTOR: Thank you, Evelyn. 

37:04

Yes. Just to quickly recap and, again, this  is something that we'll continue to work on.  

37:11

In January, as you mentioned, we discovered  that you know, that some of the buildings   located at Fernald Developmental Center  contained the documents related to people  

37:21

who were served by DDS us as well as the  records of some of the DDS staff as well. 

37:28

We worked with the City of Waltham  to conduct review of any accessible  

37:33

buildings that we could on the site. Um, "accessible" means that we could  

37:38

walk in safely. There is still   some buildings where it's very unsafe to be in. And, um, we worked to locate whatever documents  

37:49

we could find and to remove any that we could. We quickly found out that the condition of the  

37:57

documents and the extent of some of the  information that were there, it's private,  

38:05

but not fully known what all of that was.  And did contain personal information. 

38:15

Within the buildings, the state of the  buildings, as I said, many aren't safe. 

38:20

And also where the documents were located,  along with the documents themselves,  

38:26

there was the presence, we found very  hazardous materials, very unsafe, that  

38:34

our staff it was unsafe for our staff to go into  the buildings and to retrieve those materials. 

38:40

So we contracted with a vendor who  specializes and hazardous cleanup. 

38:46

Those are the folks you see the HAZMAT  uniforms and, um, air machines and a  

38:55

lot of very protective gear. These are professionals at it.  

39:01

And they are very good at their job. So we contracted with a contractor  

39:08

that they went into whatever buildings  they could and retrieved all the paper. 

39:13

They didn't stop to see what they were. Anything  that was a piece of paper like we talked about  

39:19

before um, they gathered. That work was done, um,  

39:24

on March 7th, about two weeks ago. All the documents that they collected  

39:30

are currently securely stored at a DDS facility. We are working with the state archivist and the  

39:39

Secretary of State's office to get  their recommendation on what kind  

39:45

of requirements we have to follow to  keep them and what to do with them.  So we're still working with those two offices. But right now, whatever documents could be taken,  

39:56

that we contracted with this vendor are  securely stored at a DDS facility. And as  

40:04

Emily just mentioned, we immediately also  recognize our obligations under HIPAA. And  

40:13

we provided the public notice on the website and  a press release that we sent to all major media  

40:20

outlets to let them know that the information  was there, as Emily mentioned and also to,  

40:27

if anybody wants information or has any  concerns, particularly those family members  

40:34

of those who were there and, um, individuals  that were there, that they can contact DDS. 

40:41

So that's the current update we have on these  records. But, again, we are still very focused  

40:50

on this. And, um, any further updates, I'll  provide to the commission at a later date. 

41:01

Any questions? Comments? Then cochairs, I think I'm done, then. 

41:17

>>MATT: Thank you. Victor. This is Matt again.  >>VICTOR: Sure. >>MATT: Next I have the next item on the  

41:27

agenda is updates from working groups. We have four working groups, one a letter  

41:34

of inquiry, and one records and the record  process. Third one burials and burial location,  

41:41

and the fourth one a framework for remembrance.  The workgroups are still looking for additional  

41:47

members. If you would like to participate in any  of the workgroups, please email the SCSI Support  

41:54

email address and the CDDER team will share  the date of the next upcoming meeting which   is after this meeting in April. We encourage  all members to think about joining a workgroup. 

42:06

. It would not be mandatory but it would  be helpful if you could because there's   a lot of information out there about it. >>EVELYN: And we would now like to invite  

42:19

each work group to share reports  on the work they have done so far. 

42:27

Reggie, could you please  give an update on work group. 

42:33

>>REGGIE: Yes. [ Simultaneous speakers ]  >>REGGIE: Let me know when you're ready. >>EVELYN: One matter of 

42:42

>>REGGIE: Well, we me and Janet talked about the  letter that was going to be sent to the governor,  

42:52

to look at everything. And talked a little bit  about it and what was details in it and what we  

43:01

and what some people wrote down for it, you know. So we talked a little bit about the letter  

43:08

and stuff like that at that last meeting. >>JEN: Reggie, this is Jennifer. Do you want me  

43:22

to just go over the five requests in the letter? >>REGGIE: Yes, please.  >>JEN: And the commission members should  have received a version. And thank you,  

43:32

everybody, for sending your edits and,  um and those are getting incorporated. 

43:38

Basically, the work group  identified five things to ask for. 

43:44

One is to look for any remaining  records at the closed institutions. 

43:51

Um, and that includes, you know, all the  DDS, um, facilities and also DMH facilities. 

43:59

The next request is to address any record  security issues that may have been identified  

44:07

while looking through those closed facilities  looking for through those closed facilities. 

44:13

The third is to develop an easy to  follow process to make record requests. 

44:21

The fourth was to create a clear process for  how confidential records are stored and when  

44:26

those records are allowed to be destroyed. And the fifth request is to provide a list  

44:34

of records that may be stored at  facilities or any of the government  

44:39

offices that are still in operation. And the letter, um, requested a preliminary  

44:48

response in 90 days. Thank you.  

44:57

>>EVELYN: The draft of the letter  was sent to the all the commission  

45:04

members will be provided a chance to review. Does anyone have questions or comments on  

45:13

the content of the letters? Alex. >>Alex: This is Alex, I wasn't sure  

45:23

if this was best for this time for here  or before Victor’s remarks. But DDS has  

45:30

been very forthcoming about how they are handle  this.. And I know that the letter is intended  

45:38

to see what is going on statewide. Part of the  reason for having the commission is obviously  

45:46

to help things move along more quickly,  because they can go across many agencies. 

45:53

I'm just wondering, we haven't heard anything from  the Department of Mental Health, and I believe  

45:58

our member who serves as their representative  is not here and has not been here recently. 

46:05

I'm wondering, in the past, there was a  counterpart for Victor on the DMH side. 

46:13

And if they are able, I know we are time limited  today a little bit, but if they are able to just  

46:19

give us a quick sense of whether or not something  similar to what DDS has encountered at the  

46:26

Fernald exists in any of the former facilities,  current or former facilities, on the DMH site. 

46:35

Again, I don't know if that's appropriate here  or if I should have said something before.  But I am, um I am very interested in getting  a quick sense of that earlier than the formal  

46:47

90 days. >>: Mm. 

46:56

>> : (Alex) Is there a  representative from DMH here today? 

47:06

I see. Well, I'll leave  

47:19

that. If I can turn to our CDDER team on that,  I would love your support in looking into that. 

47:25

But I'll let things move forward on the letter  itself and just register my deep concern about  

47:35

DMH's commitment to this work. >>LINDA: Mm. 

47:47

>>EVELYN: Can we proceed with the vote, then? 

48:03

>>RANIA: This is [ Simultaneous speakers ]  >>MATT: Sorry. >>RANIA: This is Rania Kelly.  

48:08

I was just wondering, in regards to DMH, do we  want to reach out to them to make sure there  

48:18

is some representatives at these meetings?  I'm more asking, like, putting it out there. 

48:27

>>LINDA: I agree with you, Regina, because  not to have their voice is really not good. 

48:35

And, um, I think whoever is named to come from  DMH, if they can't make it, they need to send an  

48:46

alternate person because this work is so integral  and very important. Otherwise we're not going to  

48:54

be able to get answers to our questions. So that's what I would recommend.  

49:01

This is Linda Bessom. >>GABE: Hi, everyone,  

49:16

this is Gabriel Cohen. I want to weigh in  with two updates. One, Mary Louise White,  

49:24

I'm not sure why she isn't able to  attend today. So apologies on her behalf.  I want to point out that she sits on a  seat as an appointee of the governor,  

49:34

so she's not able technically just to pass  off her seat off to somebody else. She's  

49:41

not she doesn't have that ability just to pass  off the baton, if you will, to somebody else. 

49:47

So, again, I'm not sure why not she's able  why she's not able to attend this afternoon.  So, um, I just want to provide a  quick bit of clarification there. 

49:57

And then regarding Victor's counterpart, if  you will, at DMH, he wasn't able to attend.  

50:04

His name is Jay. He wasn't able to attend  today. He's been called into jury duty. So  

50:10

just a little bit of scheduling issues. But,  you know, we can certainly follow up with Jay   and provide whatever information you need. >>Alex : This is Alex. Given the slew of  

50:26

articles and issues going on, Gabe, I this  needs to be better. And I'm just I'm sorry  

50:33

to be so blunt and I'm sorry if that comes  across as disrespectful, but it needs to be  

50:39

better. There needs to be planning for that in  advance, and this cannot happen again. We're  

50:44

seeing a stark contrast between what DDS is doing  and DMH's engagement on this, or lack thereof. 

50:56

>>RANIA: This is Rania Kelly. I like to  always give people grace. And, you know,  

51:03

I always assume best of intentions before I  start saying (laughing) anything negative. 

51:10

I would like it and I'm not sure who would come  forward to communicate the DMH that. You know,  

51:17

we totally understand there is jury duty and  someone is sick, but there should always be some  

51:22

sort of representative so it. >>Linda : Yes.  >>RANIA: doesn't hinder our  progress. Excuse me. Thank you. 

51:30

>>LINDA: Yes, I agree. Linda. >>EVELYN: So as usual, we'll be conducting  

51:45

a roll vote. So if everyone could please  unmute themselves, we will now call the names. 

51:55

>>MATT: Evelyn. Sorry. This is Matt We need  a motion first to approve. If no one really  

52:03

wants this letter , to go to the correct  people, we know how to do that. But if we  

52:10

want to send this letter to the governor and her  counterparts for we need a motion to approve the  

52:18

letter to approve, so that the same motion.. >>KATE: This is Kate. I move to approve  

52:31

the letter of inquiry. >>MATT: Thank you, Kate.  Is there a second? >>ANNE: This is Anne. 

52:42

I second it. >>REGGIE: I second it.  >>MATT: Thank you. Reggie, you're two seconds  too late. Anne beat you, so that's a second. 

52:54

>>REGGIE: Yeah. >>MATT: Now I'll do   a roll call vote. Yes to approve the letter of  inquiry. And no if you do not want to send it. 

53:04

I'd read off the names. >> Elise support worker: Elise, do you approve it? 

53:10

>>Elise : I approve it. >>Elise support worker : Thank you.  >>MATT: Thank you, Elise. Kate?  >>KATE: Yes. >>MATT: Thank you, Kate. 

53:17

Sister Linda? >>LINDA: I apologize. I have not read the letter,  

53:24

so I'm going to abstain as a result of that. But certainly this approach  

53:29

is critical. Thank you. >>MATT: Thank you, Sister Linda.  Reggie? >>REGGIE: Yes. I approve. 

53:36

>>MATT: Thank you, Anne? >>ANNE: Yes.  >>MATT: Alex? >> Alex: Yes. 

53:43

>>MATT: Miss Kelly? >>RANIA: Yes.  >>MATT: Andrew? >>ANDREW: I vote present. 

53:51

>>MATT: Vesper? >>VESPER: Yes.  >>MATT: Julia? >>JULIA: We're going to abstain. 

53:59

>>MATT: Brenda? >>Brenda Support worker: Do you   want to send the letter Brenda? 

54:05

>> Brenda: Yes. >>MATT: Conor?  >>CONOR: Yes. >>MATT: Mary Lou is not here. I vote yes. Evelyn?  >>EVELYN: Yes. >>MATT: Thank you.  Thank you Evelyn. The motion is  approved. Um, Evelyn, would you say 

54:29

>>EVELYN: Let's hear on the remaining  workshops on the status of their work. 

54:41

>> Alex: Hi, this is Alex. You've heard enough  from me, so I will be somewhat quick with this. 

54:48

The records and records access group  has met, I think, a couple of times now. 

54:55

Um, CDDER has done an enormous amount of work  in a short period of time trying to come at  

55:06

this very large issue (laughing), which seems to  have so many parts. And it's really impressive. 

55:13

Um, we have, in the meetings, we have  discussed the different legal views  

55:20

about how the public records law is handled,  which makes certain records available or not  

55:28

to people when we have privacy issues around  medical records, like, discussed before, um,  

55:37

CDDER is exploring partnerships with I think at  least two law schools for assistance in doing  

55:45

this research, um, including the Harvard  Law School and I think Suffolk Law School. 

55:55

And if you have ideas for areas  where they could be helpful to us,  

56:01

please email the commission address. And we've discussed what laws are being  

56:09

considered, bills are being considered in the  state regarding the public records law and what  

56:15

can be made available versus what is not. That's important because it will help us  

56:23

know which information on the history of  the state's facilities can be released  

56:29

and which cannot and what can be looked  into and how people get access to things. 

56:36

The next steps that CDDER and the records  committee are looking into are understanding  

56:43

better which records the state has  to keep and which ones they destroy,   because after a certain amount of time, a  lot of records are allowed to be destroyed,  

56:54

um, so which are kept and which are destroyed. And they're also looking to interview people,  

57:01

and they're going to start doing interviews  with people like the supervisor of records,   the division of open government at the attorney  general's office, and people who have been trying  

57:12

to access records about their experiences of,  um, exactly what that has been like for them,  

57:19

so that we understand better what regular folks  who have connections to the facilities whether  

57:27

loved ones or they themselves lived in one,  what they face when they try to get records. 

57:33

So a lot going on, as with all the committees,  anybody who wants to join, please, we all,  

57:39

I think, on all three committees, need all  the (laughing) all the support we can get.  But it's exciting and it's just great  to see this work moving forward. 

57:47

So if there are any questions, I'm  happy to try to answer them, if I can. 

58:05

All right. Thank you, so much, everyone. >>EVELYN: Kate, could you give us an update on  

58:12

workshop of the burials and burial location? >>KATE: Absolutely. This is Kate. 

58:19

The burial group discussed what we already  know about the status of existing cemeteries  

58:24

and burial locations. There is a list of all  of the existing cemeteries that we are aware  

58:30

of in institutions that have cemeteries that  are either actively being cared for or not. 

58:39

In having that discussion, the first thing  that we have decided to do as a next step  

58:44

is to create a gap analysis, figure out  which cemeteries are being cared for and  

58:50

which are not. There are some cemeteries that  are in such disrepair that we may even have  

58:58

trouble locating where some of those burials are. We plan to go through and look at what, um, some  

59:08

of the ideal situations are and what those ideal  cemeteries have, and then use those categories  

59:15

to kind of almost grade the other cemeteries,  to find where all of the gaps are and where  

59:22

we can best figure out how to fill those gaps  and start memorializing more of the cemeteries. 

59:30

Another step is to request the current burial  practices from active institutions. There are  

59:35

institutions that have, um, cemeteries that are  still in use. Some of them are in use in strange  

59:42

ways and have been combined with Department  of Correction cemeteries or they are part  

59:48

of other town cemeteries where other burials have  happened. So looking for what those practices look  

59:55

like and what burial practices are looking like  coming out of the institutions such as Wrentham,  

1:00:01

Hogan that are still open, what's happening,  what's happening to residents that are passing  

1:00:07

away in those institutions. And finally  to continue to interview key informants,  

1:00:13

those that are involved in caring for  and memorializing the cemeteries and  

1:00:21

also holding memorial events year after year  in some of these cemeteries, and those who are  

1:00:28

responsible for the burial records themselves. And, again, as Alex said, if there are questions,  

1:00:38

I will do my best to answer them. >>MATT: Hi. This is Matt. Does  

1:00:52

everyone understand what the gap analysis is  for this location? Because that's a decent word  

1:00:58

is there anyone that wants to say what that  is? Does anyone have questions about that? 

1:01:06

Not that I can answer them.  Maybe someone else can. 

1:01:14

>>JEN: Matt, do you want somebody to provide  more detail about what a gap analysis is? 

1:01:25

>>MATT: I don't know if anyone wants to know  sorry. This is Matt. If I know what a gap analysis  

1:01:31

is. Because I kind of don't, so >>Kate: My explanation was very cursory. I don't  

1:01:36

know that I fully understand what it looks like. >>MATT: It will probably take a while for it  

1:01:43

really to state what a analysis is, but  I know it won't be, like, a two minute  

1:01:50

or a minute overview of what that is >>EVELYN: Linda has her hand up. 

1:01:57

>>LINDA: Yes. I am really surprised that, um,  there are burial locations and you don't know  

1:02:07

where they are. That that is, Wow! regretful and  definitely, How do you get to the bottom of that? 

1:02:18

If that's what the gap analysis is, that should  be a priority, to actually locate where, um,  

1:02:27

those burial locations are. And somehow that it  be, um the conditions of these locations need to  

1:02:39

be looked at. And, um and noted, really. You know. I'm really dismayed at hearing that. Thank you. 

1:02:55

>>JEN: So this is Jen from CDDER. Just to speak to the gap analysis it would be  

1:03:07

going burial or cemetery by cemetery to identify  some basic things that we would expect, if a loved  

1:03:17

one was being buried in a cemetery. For example we  would want to know, Are there, uh, grave markers?  

1:03:28

And do the grave markers have the person's  name or their date of birth and date of death. 

1:03:34

You know, are you know, is the is  the site, um, well cared for? Is  

1:03:41

it overgrown or has it been landscaped and  is maintained in a in a dignified manner? 

1:03:50

Um, so there's a few things that the work group  wants to put together and then go through each  

1:03:57

of the known locations, um, to really kind of  figure out where there are some places that  

1:04:07

are well cared for and where there's places  where we need to maybe advocate for, um um,  

1:04:17

some additional work or potentially funding  or something to bring that burial location or  

1:04:24

cemetery up to, really, a minimum standard of  what we would expect of anybody being buried. 

1:04:33

>>LINDA: Mm. Absolutely (laughing). >>RANIA: Did you still need a a definition of  

1:04:42

what swat analysis is? This is Rania Kelly, sorry. >>JEN: I think it was gap analysis, Rania. 

1:04:49

>>RANIA: I'm sorry. I  thought it was swat analyses. 

1:04:54

>>MATT: Sorry. My Boston accent is  really bad sometimes. There's a few  

1:05:00

words I can't say. So sorry about that. >>EVELYN: And then, Rania, could you  

1:05:06

give an update of the framework for memorials? >>RANIA: Was I going to do the update? I can't  

1:05:15

remember (laughing). I thought someone else was. >>JEN: Yes, Rania, please. 

1:05:22

>>RANIA: Okay. Can you put up the points? I  mean, I can free ball it but I think you did  

1:05:28

come up with points, right. >>JEN: Yeah. It is on up on   the screen if you can see that. >>RANIA: Okay. I'm on my phone,  

1:05:37

which is part of the problem. >>JEN: Sure.  >>RANIA: Okay. So we discussed the vision  and mission and goal of the remembrance. 

1:05:50

We discussed examples from  Massachusetts and from other states.  We discussed the possibility of partnering  with architecture or design programs from  

1:05:59

local universities, and we decided what  next steps would be and I don't know  

1:06:09

what the last point is, actually, the  next steps. Can you explain that part? 

1:06:14

>>JEN: So the work group talked about having a  presentation from the Belchertown State School  

1:06:21

Friends Association about the work they've  done to memorialize the folks who lived and  

1:06:31

died in Belchertown. >>RANIA: Got it.  >>JEN: That would be Kate Benson's nonprofit. >>RANIA: Um, yeah. 

1:06:46

So we have a lot of good ideas. And  we, you know, didn't want to reinvent  

1:06:51

the wheel. We also don't want to limit  ourselves. And it was a great discussion. 

1:06:57

Any questions (laughing)? >>MATT: Well, thank you, Ms. Kelly.  

1:07:14

There are no other questions, so we'll move on. I think in our final minutes, we want to just  

1:07:20

remind everyone that we have scheduled the  next full commission meeting for Thursday,  

1:07:25

May 30th at 3:00 p.m. And we have another  meeting scheduling for the full commission  

1:07:31

on Thursday, July 18th, also at 3:00  p.m. Hopefully that works for everyone. 

1:07:37

We have at least an amount of time. So if anyone had questions before that,  

1:07:44

feel free to contact the email.  And we can try to sort it out. 

1:07:50

Um, if there are no other items to  discuss, is there a motion to adjourn? 

1:07:57

>>VICTOR: Excuse me, cochair. This is Victor. >>MATT: Sorry if you couldn't hear me.  >>VICTOR: No problem. I just wanted  to for the next meeting on May 30th,  

1:08:07

every Memorial Day weekend not weekend; it's the  day before DDS has remembrance celebrations at  

1:08:16

the Belchertown State School cemetery and the  Monson State School cemetery. And chances are  

1:08:26

and I attend both of those, along with the  commissioner. And chances are there might be  

1:08:31

a conflict. I'm not too sure. But if there is,  I'll definitely make sure that is taken care of. 

1:08:37

But I also wanted to let  you know that we do do that.  We've done it every year, rain or shine. And when the notice comes out, I'll make sure,  

1:08:48

I'll send it to CDDER, and make sure that they  send it out to the commission members so they  

1:08:53

know. And it's an open event. The public is  invited. And it's a very, um, moving, touching. 

1:09:01

We invite family members. We invite  individuals who were residents there   to share their stories. And if nothing else,  we just tell the family members that their  

1:09:10

loved ones are still loved and remembers. So, anyway, there might be a conflict. If  

1:09:16

there is, I'll definitely make sure the space. But certainly I wanted to make you aware, and I'll  

1:09:22

send the notice out when I receive it. Thank you. >>LINDA: Thank you.  >>MATT: Thank you Victor Anyone else have any questions? comments? 

1:09:42

Thank you. If not, do I have a motion   to adjourn the commission meeting? >>REGGIE: I was saying yes. 

1:09:54

>>MATT: Thank you, Reggie. Do I have a second to adjourn?  >>RANIA: Rania Kelly seconds. >>MATT: Thank you. Evelyn would like  

1:10:03

to read a roll call vote, please. >>EVELYN: Elisia? Elise. 

1:10:25

Kate? >>KATE: Yes.  >>EVELYN: Sister Linda? >>LINDA: Yes. And I appreciate  

1:10:35

the invitation to belong to one of these  working groups. I guess my question is, um,  

1:10:43

once that is decided, do they meet in between our  board meetings, or how does that work (laughing)? 

1:10:55

>>MATT: Hi. This is Matt. Each work group  is different. Some meet every three weeks,  

1:11:01

every two weeks. Whichever work group you  want to join, email CDDER and we'll have  

1:11:07

an email for the next meeting out for you. >>LINDA: Thank you. I appreciate   that. This being my first time  participating, that helps. Thank you. 

1:11:17

>>EVELYN: Reggie? >>REGGIE: Yes. 

1:11:22

>>EVELYN: Anne? >>Anne : Yes.  >>EVELYN: Alex? >>Alex : Yes, and welcome, Sister Linda. 

1:11:30

>>LINDA: You're welcome. >>EVELYN: Rania?  >>RANIA: Yes. >>EVELYN: Andrew? 

1:11:37

>>ANDREW: Yes. >>EVELYN: Mary? 

1:11:54

Vesper? >>VESPER: Yes.  >>EVELYN: Brenda? [ Pause ] 

1:12:07

>>EVELYN: Conor? >>CONOR: Yes. Yes. 

1:12:13

>>EVELYN: Matt? >>MATT: Yes.  >>EVELYN: And myself yes. >>MATT: I saw Julia, in place of Mary. 

1:12:25

>>Julia : Yeah. >>MATT: Sorry about that. So thank you, everyone.   The meeting is adjourned we'll see you in a  work group or the full commission meeting. And 

1:12:36

>>ANDREW: Thank you, take care. >> : Thank you, take care.  >>: Thank you. >>REGGIE: the meeting.

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