transcript  Special Commission on State Institutions (SCSI) Meeting: September 12, 2024

0:00

>>MATT MILLETT: Good afternoon, everyone. We  would like to call this meeting of the Special   Commission on State Institutions to order.  My name is Matt Millett, and I am one of the 

0:10

Commission's two co-chairs. My colleague Evelyn Mateo is here as the Commission's other co-chair.  As usual, before we begin, we would like to let everyone know 

0:17

that this Commission meeting must follow  the Open Meeting Law. Any votes taken during   the meeting will be done via roll call Vote. We ask that Commission members please mute 

0:29

themselves when they are not speaking and use the "raise hand" feature if they would like to speak.

0:37

Before speaking, please state your name so everyone knows who is talking.

0:44

For any questions posted from the audience in the Q&A for this meeting, CDDER will be reviewing the questions and holding them until the end of the meeting.

0:51

Today's meeting is scheduled for 2 hours. We will have a break about midway through the meeting. 

0:58

We hope everyone has taken a moment to view the agenda. These are the items   we will be Also, please speak slowly and clearly. So, everyone hears you. Thank you.

1:15

>>EVELYN MATEO: To make sure everyone can participate; we ask the following: We have CART 

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services supporting our meeting today. These are captions that help people follow the discussion.

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

1:39

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

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

2:00

acronyms as possible. Doing so will help all participants to understand 

2:05

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

2:14

I 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 

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Mass.gov page and on YouTube. >>JEN: I think Matt is talking, 

2:55

but Matt, you are on mute. >>MATT MILLETT: We wanted to announce 

3:02

the departure of one of Commission members. Rania Kelly, who has served as a representative of the 

3:09

Mass Families, has decided to step down from the Special Commission on behalf of   the Special Commission, I would like to say thank you to Ms. Kelly for her work on the Commission.

3:18

We would like to welcome Lauri Mederios who has been appointed to replace Ms. Kelly and will serve 

3:24

as the representative of Mass Families. Lauri, would you like to introduce yourself?

3:33

>>LAURI MEDERIOS:   Just a little bit about me. Just hello. >>MATT MILLETT: A little bit more.

3:43

>>LAURI MEDERIOS: I have a 31-year-old daughter with lifelong intellectual disabilities, 

3:49

medical involvement, and kind of significant dysregulation presentation. And she is the love 

3:57

of our life. I also have a daughter who has a mild traumatic brain injury and subsequently developed 

4:05

great Depression and she is now 32 years old,  and I have been a member of Mass Families on the 

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executive board after I myself took the Mass Families leadership series when my daughter, 

4:21

Ashley, who has intellectual disabilities, was just 5 years old. And I was introduced 

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to legislation and being able to talk to your legislators, and I have gone on to serve on the 

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Board as a pleasure representing the family voice with wonderful, wonderful stakeholder 

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partners all across the Massachusetts. So,, I consider myself a pretty fortunate individual 

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to not only have had that wonderful, lived life and lived experience, but also to have the honor 

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of representing Mass Families here today. >>MATT MILLETT: Thank you, Lauri. 

5:00

We would like to welcome Caitlin Ramos, who has been appointed to serve the representative 

5:07

of Mass Archives to replace Conor Snow. >>CAITLIN RAMOS: I have the honor of () what 

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goes on in the meetings. >>EVELYN MATEO: Thank you.

5:49

We would now like to invite Emily from CDDER to provide a high-level recap of our last meeting 

5:58

before we vote to approve the minutes. >> () Director of the Boston Center for 

6:12

Independent Living. And Conor Snow from the Mass State Archives. The Letter of Inquiry, 

6:21

receipt of response from the State. This letter was sent to the Governor and the 

6:28

Secretary of Health and Human Services.  Overall, the response to the letter was 

6:33

very general and focused mainly on (). The responses about the processes appeared to be 

6:40

more straightforward than how the Commission has heard that some people have experienced trying 

6:45

to get records in recent attempts. There are multiple areas where the Commissioners   wanted more information and to validate the accuracy of the information that was provided.

6:57

As a result, the Commissioners voted to take the drafting of a response letter into the records, 

7:04

access group for consideration, and to make our recommendations for next steps. We will talk more 

7:11

about response to that letter in today's meeting. The Commission discussed recent developments, 

7:18

including news articles, vandalism of the () property and Nazi and skinhead graffiti. There 

7:29

were updates provided from the # working groups. The first was from the records and 

7:35

records access Workgroup. They discussed two currently proposed bills in the House and the 

7:41

Senate on records access. They also discussed work with the Department of Mental Health 

7:49

to obtain access to Foxborough State Hospital records and a list buried on hospital grounds.

8:01

The burials and burial location Workgroup discussed the list that they have created 

8:07

of currently known burial locations of former institutional residents. That includes cemeteries 

8:16

located on the grounds, former institutions, or burial plots found in town cemeteries.

8:25

The report also discussed the gap analysis that's been conducted as part of the Commission's work, 

8:31

looking at burial location, maintenance of the sites, markers of graves, 

8:38

access to the site, and other relevant details. The Framework for Remembrance working group talked 

8:46

about the presentation from the Willowbrook () group, and upcoming meetings with the California 

8:54

State Hospitals that created the Cal historical timeline of institutions in Massachusetts to 

9:10

define the research scope of the Commission. The presentation reviewed how services in 

9:16

Massachusetts started with institutional care for the poor, and later changed to create centers to 

9:23

specifically provide institutional care for people with disabilities.

9:29

We discussed how people were labeled in different ways, depending on their medical conditions and   support needs, and that sometimes the breaking of small laws or not following rules were used 

9:41

as reasons for putting people in institutions. For many years, people living in institutions were 

9:48

referred to as inmates. People with mental illness and developmental disabilities were included in 

9:56

many different types of institutional settings in Massachusetts over time. This included but 

10:02

was not limited to almshouses, asylums, houses, special reform, and training schools for children, 

10:12

as well as prisons, and the Department of Defective Delinquents. This history 

10:18

and the details in it will be included in the draft report to Commissioners that's in 

10:24

preparation by CDDER. Commissioners then have the opportunity to discuss the scope of the 

10:30

Commission's research based on the presentation of the history of institutions in Massachusetts.

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And you will see some of that history discussed today in reference to the   burial report. Thank you. >>MATT MILLETT: Thank you.

10:51

Before we dive into this afternoon's discussions, we have our vote on the   minutes from the Commission's last meeting back in July. Draft copies of the meeting minutes 

11:01

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

11:08

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

11:20

so if everyone could please unmute themselves, I will now call out   your names in alphabetical order. First, do we have a motion to approve the minutes?

11:34

>>ANDREW LEVRAULT: I will make a motion to approve.  >>BILL HENNING: Bill Henning. I will second. >>MATT MILLETT: Thank you, Bill. And now I 

11:46

will read the names in order. >>JEN: Lisa Downing?

11:52

>>ANNE FRACHT: This is Anne. We are still waiting for Elise to be here, 

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so she will be here momentarily. >>EVELYN MATEO:   Kate Benson. >>Yeah.

12:42

>>EVELYN MATEO: [ off mic]. Bill Henning? >>BILL HENNING: Approve.  >>EVELYN MATEO: [ off mic]. Lauri Mederios?  >>LAURI MEDERIOS: I read the minutes, but I wasn't at the last meeting. I don't know what 

12:48

I should do in that instance. >>MARY MAHON McCAULEY: It 

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would usually be abstained. >>LAURI MEDERIOS: Abstained.  >>EVELYN MATEO: Vesper Moore? Caitlin Ramos?

13:07

>>CAITLIN RAMOS: ()? >>MATT MILLETT: Abstained, please.

13:23

>>EVELYN MATEO: And myself, agree. Did I miss anyone? Reggie Clark.

13:40

[ off mic ]. >>MATT MILLETT: 

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Will be available on the Commission web page. >>EVELYN MATEO: The next item on the agenda is a 

14:14

report from the Workgroups. We have 3 Workgroups, one on Records and Records request processes, 

14:25

one on burials and burial locations, and one focused on the framework for remembrance.

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The Workgroups need additional members. Please consider joining the Workgroup. If you 

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would like to participate in any of the would like to participate in any of the Workshops, please email the SCSI support email address and the CDDER team will share the dates 

14:54

of the next scheduled Workshop meeting. >>MATT MILLETT: And we would now like to 

15:01

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

15:08

Mary, could you give an update on the Records and Records Request Workgroup?

15:15

>>MARY MAHON McCAULEY: Sorry, I'm not on the camera today. I'm having a problem with the visual   over here. But you all can hear me,, okay? >>MATT MILLETT: Yes.

15:24

>>MARY MAHON McCAULEY: Okay. Great.  So, we actually have broken down   the records working group minutes from our meetings into two sections, 

15:38

and the first section is really looking at the legal questions that we have put together 

15:46

to have our law student's research. So, there is a number of questions that we are putting forth to 

15:52

the law students for them to research for us, and I believe either Jennifer or someone else 

15:59

is going to help us out by reading those, please. >>JEN: Yes, this is Jennifer. The attached sorry, 

16:10

the document that is up on the screen right now was sent out to Commission Members earlier in 

16:19

sorry, in August. And we just wanted to review these first, one more time, and then we wanted 

16:28

to hear from the Commission Members, if you have any preference about which questions matter the 

16:35

most to the Commission. We have 4 questions, and we want to kind of get an idea of what's the most 

16:43

important for the Commission to hear about. So, the 4 areas that we talked about, and I'm 

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going to summarize, I'm not going to read this we are not going to sorry, read through everything, 

17:01

but I will give a high-level summary. So, the first question that we that the 

17:07

Workgroup would like the students to research is really examining the medical privacy laws from 

17:19

all 50 states that govern access to historic patient records, and give us a summary of 

17:29

when the records become public or made available to descendants and researchers. 

17:36

And the statute that the law is based on. And we would also like the students to 

17:42

research the types of records, which would continue to be protected permanently. So, 

17:48

for example, things like somebody who may have a substance abuse history or somebody who may 

17:55

have an HIV or AIDS diagnosis. So, what types of records would be kept private.

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We were also wanting to under that question, we wanted to understand if there are differences 

18:11

in the rules, if the records are held at the State's archives versus if they are 

18:16

in the possession of a public agency. Or a private collection, like at a University.

18:28

In addition, we would also want an analysis around the rules around how records are destroyed, 

18:35

and the regulations that put those laws that really enact those laws.

18:43

So that's really Christine, can you scroll back up, up to yep, Scenario 2. There we go. Thank you.

18:51

>>CHRISTINE ROA: You're welcome. >>JEN: So that's the first question,  is really, you know, doing a comparison across all 50 states. The second is researching laws or 

19:08

legal rulings which define death records and HIPPA protected records, and the difference between the 

19:15

two. And to provide a historical perspective of how states handle death records for the 

19:22

general population as compared to death records within a state-run institution for the disabled. 

19:30

So that's number 2. So what are the rules around   death records and HIPPA and what's the difference. The third scenario is taking a look at the current 

19:49

and historical laws in Massachusetts that govern the disposition or what happens to a deceased 

19:58

patient at the various institutions. And we would want to understand more about any consents or 

20:06

agreements that had to be put in place, or what happened to the bodies after the person was if a 

20:17

person was used in part for medical science.  And get a deeper understanding of about how 

20:28

holders of collections manage anatomical samples or human remains. So that's the third question.

20:38

And then the last one is if they could provide a summary of the laws that would govern compensation 

20:47

to patients at institutions that were forced to perform duties that an employee would otherwise 

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be expected to perform with payment with a payment to do that work. So the examples 

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would be bathing, feeding, or dressing another patient on the unit they lived in.

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And those are the 4 scenarios, and we wanted to hear from folks on the Commission, 

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is there a preference about which questions matter most to have the law students work on for us.

21:30

>>Hi. This is Caitlin Ramos from State Archives.  I think these are all excellent questions that 

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could use studying into the intricacies of the laws. I think the first scenario probably from 

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my perspective would be the most important to look into, but really, they are all very good questions.

22:03

>>ANDREW LEVRAULT: Do you mind   going back to the questions real quick? >>JEN: Christine, can you shift over to 

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that Word document again? Yeah. >>ANDREW LEVRAULT: Thank you.

22:18

>>CHRISTINE ROA: Just let me know which question. >>ANDREW LEVRAULT: No, I guess my thought would 

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be in terms of the 50-state survey is the purpose of that like do we want to narrowly focus on what 

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are the existing laws in Massachusetts and how can we navigate that system, or is the goal to look at   what other states do so we can propose legislation where we might amend our current statutes to be in 

22:43

line or maybe more generous as other states do, or is this kind of both, if that makes sense?

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>>EMILY LAUER: Facilitating access and where there is either confusion or inconsistency or that they 

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are barrier to access, and then using the 50-state information to look at other models that 

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might be promising to address those issues. >>ANDREW LEVRAULT: Okay. That's great. Yeah, I think those questions are make a lot of sense. I appreciate the work on that.

23:27

>>BILL HENNING: This is Bill. It would just be  good to take one more glance at these quickly. 

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I don't know, I'm not asking to reread the whole  thing, just one quick review on substance again.

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>>JEN: Would it be helpful to kind  of just verbally summarize again?

23:54

>>MARY MAHON McCAULEY: Yes. >>JEN: Okay. So the first question   is examining the State medical privacy laws from  all 50 states. The second question will be would 

24:07

be to research either laws or legal rulings that  define death records and HIPPA protected records 

24:16

and what the differences are between the two. The third is to take a look at Massachusetts 

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laws that govern what happens to the remains  of deceased patients at different institutions, 

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including things like consent and for  dissection or autopsy, and then how if 

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there are collections of anatomical samples, how  those are managed by the holder of the collection.

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And Number 4 would be to understand the laws that  would govern how a patient at an institution, 

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who would have been required to  perform duties at that institution, 

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how what would govern their compensation. >>EMILY LAUER: If I may make a point of 

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clarification for those who may not be able to  read the screen, Scenario Number 3, because we are 

25:30

looking at what happens to someone's body after it  is used for medical science or training is because 

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during a period of time there were some laws in  the books that either permitted or encouraged 

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or required people who died at institutions  whose bodies weren't claimed by families were 

25:52

donated to science for training. So I wanted  people to have is that understanding of why 

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that scenario has been put forward. >>MARY MAHON McCAULEY: This is Mary, 

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and I would like to ask a general question.  I mean, I'm clearly on this working group and 

26:16

have been involved in these discussions. But  at this point I don't know the direct answer, 

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and I'm curious if anyone else knows if  any of the other states or any part of the 

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U.S. has been involved in looking at compensating  individuals for work they did within institutions. 

26:40

You know, specifically Number 4. >>LAURI MEDERIOS: Can I ask a 

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followup question to that thread? >>MARY MAHON McCAULEY: Sure.

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>>LAURI MEDERIOS: I'm Number 4 is pretty important  as a priority, it can affect somebody right now.

27:03

>>MARY MAHON McCAULEY: Right. >>LAURI MEDERIOS: My question to   your question, not to be challenging, is I'm not  sure it makes a difference whether other states 

27:10

have figured out how to pay someone who worked  without compensation. I think there must be laws 

27:15

on the general Massachusetts, under general  laws that you pay someone who has done work, 

27:21

if we discovered that somebody hasn't been paid  20, 30, 40 years ago for work they performed, 

27:30

then let's pay them. Not figure out how or what  other states did, I think the laws could be looked 

27:38

at right here in Massachusetts, if I went to work  at Market Basket for 6 months and didn't get paid, 

27:45

there are laws in Massachusetts under employment  laws that I could avail myself to or cite 

27:52

on behalf of myself to be compensated. >>MARY MAHON McCAULEY: Right. No. Yeah. 

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And I absolutely agree with that, and  the only reason it would be interesting   to see if other places did it is because  you can spend millions of extra dollars, 

28:08

but by finding out if someone else did it in a way  that was quicker and faster and, you know, less 

28:13

expensive then we could take advantage to the  steps they took to get to the final point.

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>>LAURI MEDERIOS: Yes, I agree. >>MARY MAHON McCAULEY: Yeah. 

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So if there is no other questions on or  comments on this particular piece of work 

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that the record subcommittee working  group put forth, I will go into the   next section, does that sound okay? >>LAURI MEDERIOS: Can I make another 

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remark regarding Number 2? >>MARY MAHON McCAULEY: Sure.

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>>MATT MILLETT: Not to interrupt, this is Matt  Millett. Can you pronounce your name, name for us?  >>LAURI MEDERIOS: Lauri Mederios. I  apologize. This is Lauri speaking.

29:11

>>MATT MILLETT: Thank you. >>LAURI MEDERIOS: I have a friend of mine, who is 

29:19

on Mass Family board member, now 84 years old, and  her daughter was in a DDS run State institution, 

29:29

and she passed away. And as the guardian, her  and her husband notified, went to the hospital, 

29:37

and what the doctor was able to say, medicines  that were not prescribed to her. As a guardian, 

29:53

they are entitled to medical records,  but now that the daughter has deceased   there is no longer a guardian, and that  they weren't entitled to those records.

30:03

And and her husband died before they ever got  resolution on that, so if this scenario Number 2 

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could address or somehow tackle that particular it  might be like something that doesn't happen often. 

30:24

I would say that Number 2 is a priority, then. >>MARY MAHON McCAULEY: 

30:32

Thank you. Yeah. That's  pretty that's unbelievable.

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Yeah. Thank you. And it is kind of  a subsection specifically to that,   the situation that you just presented.  So this is Mary Mahon McCauley again, 

30:47

and getting to the second piece of work that was  put together by the working group for records, 

31:00

we actually ended up listing information, you  know, other than the legal questions, there was 

31:11

some other things that are listed. And what I have  done, I'm going to have my assistant, Bill Noonan, 

31:21

my Executive Assistant, I'm going to have him  read through the sections. And what this is, 

31:27

is as people recall, we had put together a Letter  of Inquiry, and we had sent that to the Governor's 

31:35

Office and we sent it to the Secretary of the  Executive Office of Health and Human Services, 

31:42

with some very, very specific questions  around records for individuals that were 

31:48

not facilities under DDS, under DMH, all the  variety of facilities that we are looking at.

31:57

And we received we received answers, but not  to the full satisfaction of the group or to the 

32:05

entire Committee, I don't believe. So the answers  that we got were not as thorough as we would like 

32:12

to see, so we have expanded our questions and  these are the areas that we are going to send 

32:18

back. So if Bill, if you could read each one of  the areas just to let people know there is 4 or 5, 

32:25

and each one that he will read he is going to  start with the end of it so we can take them 

32:31

one at a time. I think that's a little easier,  and then we can discuss it as we go through.

32:36

So thank you. Please, Bill. >>All right, Mary. Hello,   everyone here today. Can you hear me okay? >>MARY MAHON McCAULEY: Yes.

32:47

>>My name is William, I have the pleasure of  working alongside Mary Mahon McCauley at the 

32:53

Massachusetts Office on Disability. And as  Mary mentioned, the secondary that we are 

32:59

going to be going through is an analysis of  the response to the Letter of Inquiry that we 

33:04

here at the Special Commission received. There  are 5 particular requests, and I'm going to go 

33:10

through each one of them. Alongside what the  Records Workgroup would like to recommend, 

33:15

and then I will hand it back to Mary for  each one to open up discussion possibilities.

33:22

To that regard, the first item is to look for  any remaining records at the closed institutions. 

33:28

Specifically DMH and DDS checked old State  institutions they used to run, to find out 

33:35

if there were records left there. They found  that records of people who lived at these places 

33:41

were moved to safe DMH and DDS buildings before  the institutions closed and changed ownership.

33:49

At places such as Medfield State Hospital  where only part of the buildings were closed, 

33:55

EOHHS has been surveying the damage. Medfield  State Hospital was limited because of safety 

34:03

concerns. They plan to work with DCAMM to see  if they can get into areas that seem unsafe.

34:12

What the Records Workgroup would like to recommend  is requesting more information about when the 

34:18

sweep of the facilities happened. It would be  helpful to have a timeline for when DMH and DCAMM 

34:24

will work together to evaluate Medfield Hospital  and any other campuses that are partially closed.

34:31

And Mary, I hand it back to you. >>MARY MAHON McCAULEY: Thank you,   Bill. Let me expand upon that a bit because, you  know, this happens a lot in State government, 

34:41

and I apologize, we talk in letters, and let me  tell people who may not understand the acronym, 

34:50

DCAMM. So it is the Department of Capital  Asset Maintenance and Management. So what 

34:59

that very large department in the State  does is look at the overall management and 

35:11

maintenance of State buildings. Whether the State  of Massachusetts owns the building or the State of 

35:19

Massachusetts rents space within the building. So, you know, what we talked about with that 

35:25

section was ruined buildings that were, you  know, really in rough shape and the Department 

35:33

of Mental Health, DMH, working with Capital Asset  Management and Maintenance, and they said they 

35:40

would be going through those buildings and getting  information and basically our question from the 

35:47

records subcommittee is when will you be doing  this. It is nice to know that it will be done, 

35:54

but we would like to know when you will be doing  it. So that's how we broke that section down to 

36:04

ask another question because it wasn't clear. Any comments or is that clear to folks?

36:21

Okay. Having heard nothing, I'm  going to go to the second section,   if you could read that, please, Bill. >>This is William Noonan speaking again. 

36:30

The second item was to address any  records security issues identified.

36:36

>>MATT MILLETT: This is Matt for a  second. Do you mind slowing down a   little bit? Just slow down ... . >>Of course, Matt. I apologize.

36:46

So the second item is in regards to addressing  any records security issues identified. EOHHS 

36:57

checked closed DMH and DDS facilities, and found  no records security problems, with the exception 

37:06

of the () Developmental Center. If any issues  come up, DMH and DDS will handle them quickly, 

37:15

following federal and State rules. What the Records Workgroup would like 

37:21

to recommend, requesting information about  how records are stored in State facilities, 

37:28

which include Worcester () and the Hogan  Center as well as State office buildings. 

37:38

This includes DDS or DMH area offices  or Central Offices that are currently 

37:45

being secured. And Mary, I pass it back to you. >>MARY MAHON McCAULEY: Thanks, Bill. So where 

37:56

are the records, how are they being stored. The  statement that comes back seeming pretty clear 

38:03

that this is how, but, you know, we have  seen a lot of records in a lot of places, 

38:08

so we are asking some more details about those  records and the various records from a lot of 

38:16

places that seem to be stored in places that you  wouldn't necessarily think they were being stored.

38:28

Comments? Questions? Okay, Bill. If you 

38:38

could read the third one, please. >>Thank you, Mary. This is William Noonan   speaking. The third request was to develop  an easy to follow process to make records 

38:50

requests. EOHHS want to help [ audio skipping ]  by making it easier to get their records. They 

39:03

are working on clear, simple ways to do this. The  steps for former and current service recipients 

39:11

to ask for their records and for their family or  their estate to ask for them are on both the DMH 

39:18

and DDS pages on mass.gov. According to State law,  family members can get medical records of DMH and 

39:29

DDS clients in certain situations. This includes  when the family member is legally authorized to 

39:36

represent the client, such as being a custodial  parent, a court appointed guardian, or a personal 

39:43

representative of a deceased client's estate. Records can also be given if a court orders it, 

39:50

if a client agrees, or if the Commissioner  decides that it is best for the client. 

39:57

The Records Workgroup felt this response minimizes  the challenges or complexities of the process to 

40:05

request records, and would like to recommend  work again partnership with DDS to analyze the 

40:13

barriers to records access and to develop clear  guidance for former patients, their families, 

40:19

or descendents, and researchers to access  available records and the uniform process 

40:26

across the agencies for the redaction of  records, mirroring the process used by 

40:31

the archives. And Mary, I pass it back to you. >>MARY MAHON McCAULEY: Thanks, Bill. So, again, 

40:38

you know, bottom line on this is it is confusing.  It would be much easier to have a step by step by 

40:50

step process in how a person would be able  to receive their records or how a loved one 

40:58

to receive records from a deceased, if they were  the principle party. It seems that things shift 

41:10

and sway a little bit in some of these processes,  and it doesn't go as smoothly as it should. And 

41:22

the discussion is a discussion of how to make  that simpler and easier, not so that people 

41:29

should not get these records in their hands, but  the individuals that should be able to get their 

41:35

own records or the records of their deceased loved  ones or possibly researchers that are doing work, 

41:42

you know, what is the process, how do you do  it, and can we streamline it in a very clear, 

41:47

step by step process. Comments? Questions?

41:58

>>LAURI MEDERIOS: I actually have a question.  So when you get the response from the Executive 

42:04

Office of Health and Human Services, is it their  legal department that has crafted the response?

42:15

>>MARY MAHON McCAULEY: I have worked  for the Commonwealth for 35 years, 

42:21

and I can't say this with complete factual  assurance, but I would believe that absolutely 

42:30

the legal department of DMH or DDS and the  legal department of the Executive Office of 

42:38

Health and Human Services and the GLO, which is  the Governor's Legal Office, will all look very 

42:46

closely on any process that's put forth. >>LAURI MEDERIOS: Okay. Thank you.

42:52

>>MARY MAHON McCAULEY: Yeah. Sure. And the next one, Bill.

43:00

>>Thank, Bill. This is William Noonan  speaking again. The 4th request is to 

43:07

create all process confidential () records are  allowed to be destroyed. DMH and DDS have specific 

43:18

rules and procedures for handling client and  patient records. Both DMH's privacy handbook and 

43:27

DDS's privacy handbooks outlines rules for how to  handle, store, and keep confidential records. It 

43:35

follows state and federal laws requiring staff  to protect the confidentiality of protected 

43:42

health information, that DMH creates or keeps. Policies required [ audio skipping ] reasonable 

43:50

steps to prevent accidental sharing and keeping of  protected health info in secure places like locked 

43:57

offices or filing cabinets. DDS and DMH  follows the Massachusetts statewide records 

44:06

retention schedule for deciding how long to  keep records and how to dispose of them. A 

44:12

copy of the schedule can be found on the  Secretary of the Commonwealth's website.

44:18

The law that governs how long medical records  must be kept requires a 20 year retention 

44:24

period. Medical records cannot be destroyed or  moved to the State archives unless the records 

44:31

conservation board, which is overseen by the  Secretary of the Commonwealth, gives permission.

44:39

A tracking system is used to monitor when  records are removed, who takes them, and where 

44:45

they are kept. The Records Workgroup would like  to recommend requesting the official definition 

44:52

of what is considered "medical records."  And what is not considered medical records.

44:59

The Workgroup would also like to understand  the reason that(), Monson, and Foxborough 

45:05

records have not been sent to the archives,  and are stored at other State facilities.

45:11

And Mary, I pass it back to you. >>MARY MAHON McCAULEY: Thanks,   Bill. So the end there is really the question,  what is considered medical, what is not medical, 

45:24

and why some specific records were not ever  sent to Mass Archives. So questions, comments?

45:36

So I think, is there one more? >>Yes, Mary. There is one more.

45:43

>>MARY MAHON McCAULEY: Okay.  Great. Let's hear that one, please.  >>Very good. The 5th request is to provide a list  of records that may be stored at facilities or 

45:54

government offices still in operation. Both DMH  and DDS maintain detailed list records and have 

46:02

access to records still in their possession,  including those stored in the State Archives. 

46:09

The Records Workgroup would like to recommend  requesting the facility location of each set 

46:14

of institutional records and a description  of completeness and incompleteness of the 

46:19

holdings. And Mary, I hand it back to you with  a final subnote to discuss is that would the 

46:28

Commission want to write a followup letter? >>MARY MAHON McCAULEY: Okay. So everyone has 

46:37

heard the questions, we sent a Letter  of Inquiry inquiring about things, 

46:44

we got answers to our inquiries, and now we have  inquiries to the answers. So what do folks think, 

46:54

should we put together another letter requesting  this list of more detailed questions that are 

47:05

relevant to some of their specific answers? >>LAURI MEDERIOS: So I would say yes, 

47:17

but I'm wondering if there's there is any way  to interlay a tone or an outright request in a 

47:26

timely manner. I'm sorry, Matt. I forgot what  you had reminded me. This is Lauri Mederios 

47:35

speaking again. If there is any way to say, time  is of the essence or something, if I could see 

47:45

that this could just go on and on and on. >>MARY MAHON McCAULEY: Right. Thank you, 

47:51

Lauri. And actually, you know, welcome, you know,  welcome to the Commission. I'm glad you joined, 

48:00

and you weren't with us earlier when we sent the  first letter, and we did request that we get an 

48:07

answer by a certain date. So we can actually do  that again and give them some time, of course, 

48:15

which they will need, to answer all of these  things. There will be a lot of discussion, 

48:21

and we can ask for that so it doesn't go on and  on. We don't have any control when it comes back, 

48:30

but we can ask if it comes back in X number  of days or weeks or something like that.

48:39

To others, do you also feel that  another letter should be written   detailing more of these specific questions? >>KATE BENSON: This is Kate Benson. I think 

48:50

we should write another letter, if for no other  reason, yes, we have received the responses, 

48:57

but we would like to dig deeper and we  are going to continue thinking about this 

49:03

topic for quite a while. I think it would  be really helpful to keep the lines of   communication open on this topic, especially  as Alex's legislation moves forward again.

49:17

>>MARY MAHON McCAULEY: Absolutely.  Thank you, Kate. I would agree with   that. It seems it is not one letter and  one answer, it is a dialogue in my opinion.

49:36

>>BILL HENNING: This is Bill Henning.  Mary, do you have any specific other   recommendations? You have done so much work  on this. I would like to be guided by you.

49:48

[ Laughter ] Seriously. I mean, it is   hard to pick up all the nuances. You have dug deep  on this. Maybe Kate knows and a few others, but 

49:56

you have got it pretty well understood. >>MARY MAHON McCAULEY: Well, you know,   you have to really share this wealth. There  has been only one piece of it. And by the way, 

50:06

this is a wonderful time to put out a commercial.  We would love more people on the records, 

50:13

recordkeeping working group, more people  to join us. Alex Green is on that group, 

50:20

not here today, CDDER has been fabulous  and there are others that are in the   group. CDDER has been fabulous. So it is kind  of a group effort going through each one of 

50:31

these and kind of breaking down the answer that  we got, but knowing there was more behind it.

50:37

So, you know, even though my thought is that  if we miss something, if we send another letter 

50:48

requesting more detailed information on these 5  items and down the road is there something that we 

50:56

feel like we should have asked this or  that, you know, we are not closing the   door on anything. I think that, you know, we  can always go back to something and bring it up 

51:07

at a later point. Does that make sense, Bill? >>BILL HENNING: Yes, it does. I was nodding, 

51:21

but I was realizing not I apologize. I  shouldn't having known you for two decades, 

51:27

I should have figured that out. My apologies. >>MARY MAHON McCAULEY: That's fine. So I think 

51:37

that between the questions that are going to be  put forth to our law student researchers, I think 

51:44

there is kind of a unanimous yes, that people seem  to like those questions. We will add a little bit 

51:50

to one of them, and then, you know, we will work  on a letter or how about let me ask as far as, 

52:02

I believe, this would be the proper way to do it,  I would like to put forth a motion that we send a 

52:09

second letter with further inquiry asking for  this detailed information from their response.

52:22

>>KATE BENSON: I second that motion, Mary. >>MARY MAHON McCAULEY: Great. And should   we do a roll call? >>MATT MILLETT: Kate, 

52:30

you would be the first to do it, I believe. So ... >>MARY MAHON McCAULEY: That's right. I'm sorry.   Yes. So we need a second to that motion? >>BILL HENNING: Bill Henning seconds it.

52:40

>>MARY MAHON McCAULEY: Matt,   do we need a roll call? >>MATT MILLETT: Yes, please. Mary, 

52:47

if you don't mind, I will do the roll call vote. >>MARY MAHON McCAULEY: Yes, please.  >>MATT MILLETT: Elise? >>ELISE ARONNE: Yes.

52:59

>>MATT MILLETT: Kate Benson? >>KATE BENSON: Yes.  >>MATT MILLETT: () I don't  believe she is here. Reggie. Anne?  >>ANNE FRACHT: Yes. >>MATT MILLETT: Thank you,   Anne. Alex is also not here. Bill Henning? >>BILL HENNING: Yes.

53:24

>>MATT MILLETT: Andrew? >>ANDREW LEVRAULT: Present.  >>MATT MILLETT: Mary? >>MARY MAHON McCAULEY: Yes.

53:32

>>MATT MILLETT: Lauri? >>LAURI MEDERIOS: Yes.  >>MATT MILLETT: () I don't  believe is here. Caitlin?

53:43

>>CAITLIN RAMOS: Yes. >>MATT MILLETT: Thank you. Brenda?  >>Yes. >>MATT MILLETT:   Thank you. Myself is present. Evelyn? >>EVELYN MATEO: Yes.  >>MATT MILLETT: Thank you.  Motion passed. Thank you.

54:03

Mary, have anything else or could we move on? >>MARY MAHON McCAULEY: That would be it. We   can move on to another working  group. Thank you very much.

54:12

>>MATT MILLETT: Thank you, Mary. Kate, could you give an update   on the Burials and Burial Locations Workgroup? >>KATE BENSON: I'm going to echo Mary's commercial 

54:25

and say that we are very much looking for more  Commission members to participate in the burial 

54:31

location working group. And we are taking  on a huge amount of leg work and research 

54:38

in this group, and we would love more hands. The last time we met we discussed the Foxborough 

54:46

State Hospital cemetery records project. CDDER  asked records from the State to see if we 

54:52

could reassemble a list buried in the Foxborough  State Hospital Cemetery. That is moving forward, 

54:59

Jen. I don't know if there are any updates  beyond what we had from the last meeting?

55:05

>>JEN: So yes. And Emily, please jump in, or Jay.  There has been a signed letter of determination is 

55:16

that the correct term? The signed letter that's  going to give CDDER permission to access those 

55:23

records that are being housed in the Taunton  facility right now. And we are going to try and 

55:31

do some work to see if we can figure out the names  of the people that were buried in those cemeteries 

55:39

on the grounds of the State Hospital. [ Simultaneous Conversation ]  >>EMILY LAUER: I wanted to just thank  the Department of Mental Health for their 

55:48

cooperative nature in trying to sort this out.  We did review some of the classifications of 

55:55

different records and rules and laws and they  were able to work with us to find a mechanism   to create () CDDER to support this work. So I  wanted to share. I think that's a very positive 

56:06

development in really parsing out the difference  between, for example, public burial record and 

56:13

private information and how a pathway could  be created to facilitate the reconstruction 

56:18

of the burial record, which had been lost. >>KATE BENSON: Excellent. We shared at the 

56:28

last meeting what the burial report was going  to cover and the report itself will be shared 

56:34

today. It is a pretty extensive report. CDDER did  a ton of research in order to put together enough 

56:42

information where anyone who reads the report  can understand what burial practices looked like, 

56:48

and where we are at now with the cemeteries  and cemetery maintenance and memorialization.

56:55

We also discussed in our last meeting  the two exposed cemetery which is called 

57:01

The Pines, there is a Memorandum of  Understanding between () and Tewksbury, 

57:08

that the land that the patients are buried on  conservatively about 10,000, maybe even more, 

57:17

is used for what's called passive recreation, so  people are allowed to walk through the grounds 

57:24

of the cemetery as if it was a public park. There are walking trails that go through the 

57:31

entire cemetery, and they have been established  over time and you are actually walking on 

57:41

gravestones as you are walking along this  pathway. It is just I can't even describe it, 

57:50

I went to visit it, and you literally walk on to  the path, and you are immediately tripping over 

57:56

gravestones. There is a little bit of signage that  does tell visitors that there is a cemetery on the 

58:04

grounds but it is not much in the way of signage  and there is not much to really orient people 

58:11

to what it is that they are walking through  or perhaps even walking their dogs through.

58:19

So one of the questions that our group raised  is whether or not the Special Commission wants   to take any action regarding this cemetery. We  discussed possibilities of approaching Tewksbury 

58:32

and the State and say maybe there is a better way  of people moving around this piece of property, 

58:40

a better way to mark the property, a better way to  educate folks. There is a small group that has a 

58:47

Facebook page that does take care of some cemetery  maintenance. They are volunteers. Volunteer 

58:54

cleanup days. It is not something that's put into  place regularly for the cemetery. So we would like 

59:01

to know if the Commission would like to take any  kind of action regarding this cemetery, and if 

59:08

anyone has thoughts on how we could approach that. >>BILL HENNING: This is Bill Henning. Pretty 

59:18

distressing to hear this, and it is not  like we don't see stories on challenges 

59:27

at Tewksbury still. I saw something about no  fresh water. I think even raising it from this 

59:33

Commission indirectly will do a service to the  people still being served by Tewksbury because 

59:39

those eyes are still on the facility. And I'm  not trying to point fingers at anybody who is 

59:46

working there, but we still have a system or  an institution in place that has challenges, 

59:51

and this may be one way to just add more eyes  to it, is my gut reaction to just what you said.

1:00:00

>>KATE BENSON: Yeah. I think that's a great point,  Bill. The Department of Public Health is housed at 

1:00:11

Tewksbury in the main administration building.  The State has begun condemning some of the 

1:00:18

historic buildings on campus as well, so that is  kind of impacting how the DPH museum folks, they 

1:00:27

are starting to get a little nervous about how  the cemetery is going to be cared for and viewed 

1:00:35

moving ahead if buildings are going to start  to get condemned. They are nervous, I guess is 

1:00:43

a good way to put it, I guess. >>MARY MAHON McCAULEY: And Kate, 

1:00:48

this is Mary. I'm wondering, and this  may not be possible, but, you know, 

1:00:57

requesting walkways that are not walking directly  over the graves of the deceased, like within ...

1:01:06

>>KATE BENSON: Yes. >>MARY MAHON McCAULEY: Most other cemeteries   there is a road or place that you drive or walk  through in a certain way so that you are not, 

1:01:17

you know there is more honor given to the deceased  that are there. So could they make a walkway 

1:01:24

that's around it or goes through it and is not  as close to all of the graves instead of having 

1:01:30

people walk directly on top of the graves? >>KATE BENSON: Yeah. Correct.

1:01:38

>>LAURI MEDERIOS: I have a question. I'm sorry. >>KATE BENSON: Go ahead, Lauri.  >>LAURI MEDERIOS: It is Lauri Mederios.  I just don't know, I have a question, 

1:01:46

so I will go ahead and ask it. Does  the Town of Tewksbury have any type of 

1:01:56

agreement or understanding with the Commonwealth  about these properties? You know how like, 

1:02:05

even though they didn't, you know, keep  up with their end of it, Tewksbury, do   they have some sort of agreement with  the Commonwealth about these grounds?

1:02:17

>>KATE BENSON: Jen or Emily, could  you speak to what specifically is in   the MOU? I have not seen that document yet. >>EMILY LAUER: Yes. There is a Memorandum of 

1:02:29

Understanding or MOU regarding its use for  a public access way, and there was also a 

1:02:39

further amendment to that. We can pull up the  specific language for you and distribute it to 

1:02:45

the Commission if you would like to see it. >>KATE BENSON: That would be great. I think 

1:02:50

a lot of people would like to see what  that looks like and what it entails.

1:02:56

Lauri, did you have any other questions? >>LAURI MEDERIOS: Well, other than, you know, 

1:03:03

I followed Bill's remark, that it  is pretty disturbing, I'm getting   emotional. I'm sorry. It is pretty emotional. >>KATE BENSON: I cried when I walked through it. I 

1:03:13

have been in so many of these cemeteries, and this  was the first one that really I mean, it got me.

1:03:24

[ Laughter ] Does anyone else have any thoughts on   the Commission taking action about this cemetery? Okay. All right. So it sounds like we may want to 

1:03:42

take some action and may want to think about what  that action might be, so I don't think there is   anything to put forward or vote on at this point. >>LAURI MEDERIOS: Emily, it is Lauri Mederios. I 

1:04:01

just want to say in closing, I don't  know if you were looking to pull up 

1:04:07

the MOU, but maybe you could, after this  meeting is closed, as a followup maybe 

1:04:13

you could just send that along, if that's okay. >>EMILY LAUER: Yes. I was pulling it up from our 

1:04:21

records. It's a little lengthy to read. >>LAURI MEDERIOS: Okay. Yeah. Sure.  >>EMILY LAUER: But we will make sure that we  send that out to the Commission Members, both 

1:04:30

the Memorandum of Understanding, which is between  the Department of Public Health and Tewksbury 

1:04:37

Hospital, as well as the addendum that was made  to it between the two parties to allow for what 

1:04:45

is called the Bay Circuits Alliance, which is the  park system. So we will make sure you receive all 

1:04:52

of that and the maps included in there as well. >>LAURI MEDERIOS: Okay. Thank you. Because should 

1:04:57

we be going forward, it would be good to know what  that understanding is as a foundation, but I 100% 

1:05:08

agree that, yeah, I will be on that committee. >>EMILY LAUER: I can briefly summarize, 

1:05:16

it talks about open space requirements, minimal to  no modifications of the natural landscape, making 

1:05:25

sure that there's long term preservation of both  the natural resources, the cultural resources, 

1:05:33

either agricultural resources. While it does not  speak specifically about the maintenance of the 

1:05:42

graves, I think you could read into some of those  statements to say that there is an opportunity to 

1:05:47

talk with Tewksbury about current practices and  when they really meet the letter of the agreement, 

1:05:55

in an inclusive way. So I will make sure you  have all of that, and I apologize in advance, 

1:06:01

the copy that was publicly available has  marking up and underlining, so a couple of 

1:06:09

the sections are challenging to read, but we will  do our best to make it as accessible as we can.

1:06:16

>>LAURI MEDERIOS: And it might be important  to know, and I can look this up myself,   I'm sure they do, if Tewksbury has a  disability commission as a town, because 

1:06:27

sometimes it would be good to join with them  in any endeavors about addressing any concerns.

1:06:37

>>MARY MAHON McCAULEY: And this is Mary. I don't  know off the top of my head, we keep a list, 

1:06:46

we try to stay up to date on the cities and towns  along with the person to contact on our website.

1:06:58

>>KATE BENSON: Thanks, Mary.  That's a great resource.  >>MARY MAHON McCAULEY: Sure. >>KATE BENSON: Okay. Thank you, 

1:07:06

everyone, for the input. >>MATT MILLETT: Thank you, Kate.   This is Matt. Mary, could you give us the update  on the Framework for Remembrance Workgroup? Is it

1:07:20

>>KATE BENSON: Sneak up on you. >>MATT MILLETT: 

1:07:26

Sorry. Couldn't remember who it was. >>KATE BENSON: You are stuck with me 

1:07:32

still. Reggie Clark was not able to share out on  the Framework or Remembrance. The group recently 

1:07:41

attended a present if there is someone that  could give a synopsis of the presentation 

1:07:56

and what the presenter had to say, that would  be wonderful. Because I wasn't there. Otherwise, 

1:08:08

I can just pretend I was there. [ Laughter ]  >>JEN: If it is okay with the Commission, I  can go through the talking points that Reggie 

1:08:16

had prepared, if that's okay. >>MARY MAHON McCAULEY: Sure.  >>JEN: So this is Jennifer. As Kate mentioned, the  California Memorial Project did a presentation on 

1:08:34

the 8th of August. The California Memorial Project  started back in 2002, and the goal of the project 

1:08:46

is to honor and respect people with mental health  and developmental disabilities who lived and died 

1:08:53

in California State institutions. And Disability  Rights California and the peer support peer self 

1:09:02

advocacy program supports this project. They  worked with their State Senators on a Senate 

1:09:10

bill to start the project, and they made a team  of different State agencies and disability groups, 

1:09:19

which helped communities set up remembrance events  at the various institutions across the state as 

1:09:27

well as do fix ups of different cemeteries. The team raised money and applied for grants 

1:09:35

to build memorials, and the State also  gave some money to build memorials.

1:09:43

The California Memorial Project has  established an Annual Remembrance Day, 

1:09:49

which is on the third Monday of every September,  and on this day events are held across the state 

1:09:56

of California at the different institutions, where  they hold moments of silence, they have music and 

1:10:04

poetry from former patients and residents,  and they hear speeches from different people 

1:10:10

involved in the disability community. The memorial project is now collecting 

1:10:17

stories from people who have lived through these  experiences of living in an institution, and they 

1:10:23

are sharing them now on their website. The project  team said that they had they have had challenges 

1:10:32

over the past 22 years getting local communities  involved to independently manage and hold the 

1:10:43

memorial services. And there is only two staff  members that are running the project now, so the 

1:10:50

funding has kind of died off over time. So those  were the challenges that that group experienced.

1:10:58

But they still keep going.  Does anybody who was able to   attend that presentation want to add anything? Okay. That was the talking points that Reggie 

1:11:16

had for the California Memorial Project. >>KATE BENSON: Excellent. To add to our 

1:11:27

information gathering, the group is going to be  talking with Pat Deegan on September 25th. Pat was 

1:11:35

instrumental in memorializing [ audio skipping  ] we () about 10 years ago, and were able to 

1:11:50

get funding from the Department of Mental Health  and from Danvers to create a memorial on the Hill 

1:12:00

where Danvers State Hospital used to be and there  is now a condo complex. The memorial is it is very 

1:12:08

large, it is very informative, it's absolutely  beautiful. They did a wonderful job. And Pat's 

1:12:14

work as a peer support specialist is unparalleled.  She is a wonderful resource, and that's going to 

1:12:23

be an excellent talk to have with her. Does anyone have any questions?

1:12:38

Is there another slide for this, Jen, or was that? Okay. Perfect. Okay. Then we are ready 

1:12:43

to move on. Thank you, everyone. >>MARY MAHON McCAULEY: Thanks, Kate.

1:12:49

>>EVELYN MATEO: Thank you, everyone. We  will take a 5 minute break. And when we   come back, CDDER will present on the draft  report on burials and burials location.

1:13:04

>>JEN: We could regroup again.  Could we regroup at 3:55?

1:13:14

>>EVELYN MATEO: Yes. [ 

1:17:47

Break ] >>JEN: 

1:18:20

One is an attachment that lists the cemeteries  associated with the State institutions, and the 

1:18:27

second attachment is an example of the cemetery  profiles that we are preparing for the report.

1:18:35

Today we would like to talk through the report and  the two documents, time allowing. We understand 

1:18:42

that folks want to be able to leave at 4:30, and  we can if we end up running out of time we can 

1:18:49

continue the review at the meeting in October. So we put some slides together, and we would 

1:18:57

like to walk through. We did break it into  sections of the report, and we are going to 

1:19:04

pause for feedback or questions at each sorry,  we are going to pause for feedback or questions, 

1:19:15

but you can also send feedback to us through  the SCSI email if you would like to do that.

1:19:29

I would like just like to warn you about some of  the terms used in this report. Some of the words 

1:19:39

that are used are offensive, but we are using  some of the terms that were used over the history 

1:19:47

of this institution. So, for example, so it was  common to refer to people who lived in a State 

1:19:54

institution as an inmate. So that's an example. Next slide, please.

1:20:02

So these are the sections of the report, and we  are going to cover burial of the poor, burial of 

1:20:12

people living in institutions, deceased inmates,  funding of burials, death record laws, cemeteries, 

1:20:24

and then areas for additional research. Next slide. Thank you. And we will go into 

1:20:30

First Burials of the Poor. Next slide.

1:20:37

So in the 1850s Massachusetts built 3 almshouses  to help poor people who came to the State. And 

1:20:46

those almshouses were in Tewksbury, Bridgewater,  and Monson. And they were the first places 

1:20:55

where poor people who did not have legal  settlement or legal papers in Massachusetts 

1:21:00

where they were sent to live, and many people  in these almshouses were sick or disabled 

1:21:07

and couldn't take care of themselves. And many  people with disabilities lived in the almshouses.

1:21:15

Next slide, please. When somebody who was poor 

1:21:21

or lived in the State almshouse died and either  they had no family or friends or the money to 

1:21:29

pay for a burial or a funeral, they were buried  on the almshouse grounds. Sometimes they were 

1:21:36

buried in a wooded area or in a near by field,  and other times they were buried in a special 

1:21:42

part of the town cemetery called a Potter's  field, and sometimes called a pauper cemetery.

1:21:51

The graves of poor people usually did  not have gravestones. Some were marked 

1:21:57

with numbers on metal markers, and oftentimes  people were buried, wrapped in simple cloth, 

1:22:05

and placed directly in the ground. Later on, in the 18th Century, is when 

1:22:13

people were buried in simple pine boxes. Any questions or feedback on this first 

1:22:21

introductory section? >>MATT MILLETT: 

1:22:30

This is Matt. () should we describe what that  is, an almshouse? Do people know what that is?

1:22:40

>>JEN: What an almshouse is? >>MATT MILLETT: Because that's an old 

1:22:46

description ... () question or comment. >>JEN: Okay.

1:22:59

Other questions or comments? Okay. Thank you, Matt. Let's 

1:23:13

move on to the next section, which is  Burial of People Living in Institutions.

1:23:22

So at each of the institutions, there  was a chaplain, right? Kind of like a 

1:23:36

priest or somebody who was in charge of  religious services at the institution, 

1:23:42

and they often had a small chapel on the grounds,  and the chaplain was responsible for providing 

1:23:49

spiritual care and support to the people living  there. And that's actually well documented in the 

1:23:57

Annual Reports from the State institutions. And the chaplains would often tend to people 

1:24:06

who were sick or dying, and they may say  special prayers or provide last rites.

1:24:16

Next slide, please. When somebody who lived in a State institution 

1:24:24

died, obviously as we just talked about they the  institutions may buy plots from town cemeteries 

1:24:36

or may have had a cemetery built somewhere on the  grounds, and we actually have some evidence in the 

1:24:45

State sorry, in the Annual Reports that show that  the patients helped to make pine boxes, sew burial 

1:24:56

clothes, like shrouds and robes and sheets. The grave markers in these institutional 

1:25:06

cemeteries have very little information  about them, and it is thought that that 

1:25:12

was because of the stigma around having a  mental illness or disability at the time.

1:25:22

Across the different cemeteries the grave  markers are different. Some cemeteries 

1:25:28

have a small concrete slab with no name and maybe  just a number. And then others would have a slab, 

1:25:40

a stone slab with letters, like C  for Catholic or P for Protestant 

1:25:46

carved on them, but no other identifying  information to know who was buried there.

1:25:53

Next slide. Any questions   or feedback on this piece of the report? >>MARY MAHON McCAULEY: Yes. Thank you, 

1:26:13

Jen. This is Mary. Just I'm curious if you know  when individuals died within the institutions, 

1:26:27

was there an automatic letter that went out to the  closest loved ones or the did they have a list of 

1:26:36

close family or next of kin to send something to? >>JEN: Yes. And we are going to talk a little bit 

1:26:48

about that when we talk about autopsies. >>MARY MAHON McCAULEY: Oh, okay.  >>JEN: But yes, there would have been a list  of contacts or next of kin available. But my 

1:27:00

understanding from what I have researched is that  the family notification was inconsistent or there 

1:27:08

was variability across the different institutions. >>MARY MAHON McCAULEY: Right.   Right. Thank you. >>JEN: Other questions?

1:27:25

Okay. Let's go to the next slide. And actually, we are going to 

1:27:32

turn the presentation over to Christine. >>CHRISTINE ROA: Thank you, Jen. Good afternoon, 

1:27:38

everyone. This is Christine, and I will be  presenting the section on deceased inmates.

1:27:47

If someone at the institution had family  or friends who could pay for their burial, 

1:27:54

those people could take the body and choose  a funeral Director to handle everything. The 

1:28:01

family could also decide where to bury  the person. Their relative. If there was 

1:28:08

no one to claim the body or pay for their  burial, then the institution took care of 

1:28:15

it and we actually have a quote from  one of the First Annual Reports from   Taunton that described patients that died  being taken by their families for burial, 

1:28:27

and those that did not have family or money  that were buried on the grounds of the hospital.

1:28:38

In 1931 a new bill was proposed to  help families pay for the burial 

1:28:44

of their relatives at institutions, but it  is not clear what happened with that bill.

1:28:56

During the early 1800s, doctors, and my  apologies, we are shifting over to deceased 

1:29:05

inmates and focusing on anatomical sciences.  So the study of bodies after the person passes.

1:29:17

So during the early 1800s, doctors and  medical students needed bodies to study, 

1:29:24

but didn't have enough of them. This  led to grave robbing and selling bodies 

1:29:29

from pauper cemeteries or institution  morgues to medical schools. In 1831, 

1:29:37

a law was passed allowing institutions to give  unclaimed bodies to medical schools for study, 

1:29:45

which created a legal way for the  schools to obtain the bodies they needed.

1:29:51

However, there were scandals about the Tewksbury  Institution selling bodies to medical schools.

1:30:06

In 1921, Massachusetts passed a law called  the Promotion of Anatomical Science. This law 

1:30:15

required institutions to send unclaimed bodies  to medical schools within 3 days of death unless 

1:30:24

family or friends claimed the body first. The medical schools had to keep the body 

1:30:31

for 14 days to allow enough time for  identification. They also had to promise 

1:30:39

that the body would be used properly and buried  decently. This law is still in effect today, 

1:30:47

but does not apply to veterans would, who  live at one of the State run soldiers homes.

1:30:57

Are there any questions or  feedback on this subject?

1:31:04

>>MARY MAHON McCAULEY: This  is Mary. Was that 1831?  >>CHRISTINE ROA: 1931. >>MARY MAHON McCAULEY: 1931. Thank you.

1:31:15

>>LAURI MEDERIOS: This is Lauri Mederios. How  would an individual, who would be considered 

1:31:23

disabled, actually give their consent? I mean, you  know ... I'm not actually asking you the question, 

1:31:38

I'm just wondering out loud, you know, my  daughter couldn't do consent. She wouldn't 

1:31:44

know what the question is. You know what I mean? >>EMILY LAUER: Right. This is Emily Lauer from 

1:31:51

CDDER. Just helping to clarify a little bit here.  So if the person had a legal guardian appointed, 

1:31:58

they would not be able to give consent, but  they would be able to give what's called   assent. Meaning there is agreement, but it is  not legally binding. It would have to come from 

1:32:08

a legally appointed guard Anne if they are under  guardianship. If they were not under guardianship, 

1:32:14

they could consent themselves. But I  think you can see with this process, 

1:32:20

essentially you have to take the initiative  to opt out of it, and otherwise, be these 

1:32:26

historic laws would have applied. And for  those who were not claimed by family or by 

1:32:32

friends where that was permitted for a period  of time, it became one of the default options.

1:32:45

>>CHRISTINE ROA: Thank you, Emily. Anyone  else have any questions or comments?

1:32:54

Okay. I'm going to move on. Okay. So this slide focuses on 

1:33:00

deceased inmates and in house autopsies. So many  State Hospitals had pathology departments that 

1:33:09

performed autopsies on dead bodies to gather data  and confirm causes of death. The law requires next 

1:33:18

of kin to give consent to perform autopsy,  but the Annual Reports, the pathologists, 

1:33:28

the doctor that conducted the autopsies,  wanting to get rid of the consent requirement, 

1:33:34

and advocated for their ability to conduct an  autopsy on any deceased inmate that they chose.

1:33:46

The State institutions also had morgues onsite  where body wases of the deceased inmates were 

1:33:52

prepared for burial, and we have some examples  that are some examples that we found in some of 

1:33:59

the Annual Reports, one from Bridgewater  State Almshouse, as well as Westborough 

1:34:05

Insane Hospital, both in the late 1800s. Does anyone have any questions or feedback 

1:34:19

on those two subtopics on deceased inmates  on in house autopsies or the in house morgue?

1:34:34

Okay. Going to continue. So the  next topic is funding of burials.

1:34:45

And in 1851, new state laws required ship captains  and other transportation providers to report 

1:34:54

and pay a fee for any passengers that they  brought to Massachusetts who were very sick 

1:35:02

or disabled. If a passenger, if one of these  passengers got sick and died within 10 years 

1:35:09

of their arrival and the captain hadn't  paid the fee, then the captain would have 

1:35:16

been fined a $500 penalty and they would also  have to cover the burial costs of that person.

1:35:25

These these rules also applied to trains and  other transportation companies, but the fines 

1:35:33

were smaller. This is important to note because  this created an incentive to bring healthy people 

1:35:42

into Massachusetts and a disincentive to bring  someone who was sick or disabled in Massachusetts.

1:35:57

The State also had rules for paying for  burials. If someone lived in Massachusetts 

1:36:04

in a town or city, that town had to cover the  burial costs. If the person didn't live there, 

1:36:12

then the family had to pay. However, if there  was no family or the family couldn't pay, 

1:36:19

the State would give the institution  $5 to bury people over 12 years old, 

1:36:28

and $2.50 for those under that age of 12. In 1867, this amount increased to $10 for people 

1:36:38

over 12, and $5 for those under the age of 12. Are there any questions or comments regarding 

1:36:48

the funding of burials? >>MATT MILLETT: This is Matt. 

1:36:55

The question I have, how accurate are the  records, like () is there a record of that, 

1:37:02

boat captains and stuff or like ... >>CHRISTINE ROA: So this is Christine Roa. 

1:37:11

In our research we found laws that specified these  fines and the conditions and the requirements of 

1:37:20

shipmasters and other transportation companies  with respect to individuals that they were 

1:37:28

bringing to the state, that were either  very sick or had a significant disability.

1:37:40

>>LAURI MEDERIOS: This is Lauri Mederios.  Christine. Sorry. My video is off. Sorry. 

1:37:49

You made a comment, something about  there was incentive to just bring 

1:37:55

healthy people, you know, to Massachusetts. I think the opposite may also be surmised, that 

1:38:02

there was an incentive not to report when somebody  died or became disabled on their journey or was 

1:38:12

found to have a disability, but maybe they were a  baby wrapped in a blanket, you know what I mean?

1:38:18

I think there was probably another  end of that that clearly wouldn't be 

1:38:24

in any findings or report, but I could imagine. >>CHRISTINE ROA: That's a good point. Thank you.

1:38:33

>>MARY MAHON McCAULEY: This is Mary. I'm  just curious, this is all fascinating. So 

1:38:41

the captains of the ships, when they were  bringing people into Massachusetts that   were ill or disabled and had to pay their fine,  did that were they taking them were they coming 

1:38:53

from another country or even if a ship came from  another part of the United States, was it also 

1:39:00

true or just if it came from another country? >>CHRISTINE ROA: I would have to look back at 

1:39:08

the research to confirm that, but ... >>MARY MAHON McCAULEY: Okay.  >>CHRISTINE ROA: You know,  it just specified shipmaster.

1:39:17

>>MARY MAHON McCAULEY: Right. Right. Thanks. >>CHRISTINE ROA: You're welcome. 

1:39:23

Any other questions or feedback? Okay. If not, then I will be turning 

1:39:31

the presentation back over  to Jen. Thank you, everyone.  >>JEN: Thank you, Christine. I will talk  now about this is Jen from CDDER. I'm 

1:39:43

going to talk now about death record  laws. Can you go to the next slide?

1:39:49

Okay. So in the mid 1800s Massachusetts made  it mandatory to keep records of births, deaths, 

1:40:00

and marriages, and each year certified copies of  these records had to be sent to the Secretary of 

1:40:08

State. The laws explained what needed to be on a  death certificate, and also set fees for burial 

1:40:18

permits and certificates of the cause of death. There were fines that would be handed out if 

1:40:28

a death wasn't reported correctly. The  almshouse, their reporting was different. 

1:40:36

The reporting of deaths had to go to  the Secretary of State. And this slide 

1:40:44

shows some examples of the types of paperwork  that had to be completed when somebody died.

1:40:55

Next slide, please. So there are some this slide 

1:41:02

talks about how where records were stored over  time. So records of deaths that happened before 

1:41:12

the year 1841, those were kept at the town or  city level. Records between 1841 and 1910 exist 

1:41:24

both at the local level at that town or city, but  also at the State level for most vital records.

1:41:35

And then after 1910, vital records remained  at the municipal clerk's office or the town 

1:41:43

clerk's office, and at the Registry  of Vital Records and Statistics.

1:41:51

So what's important to understand here is that it  can be very difficult to find records before 1841 

1:41:59

that were kept at the town level. They could have  disappeared or been damaged or lost over time.

1:42:08

Next slide. Any questions or feedback?

1:42:14

>>CAITLIN RAMOS: I actually have a  correction to make on that information.

1:42:20

>>JEN: Okay. >>CAITLIN RAMOS:   State Archives has birth,  marriage, and death records 

1:42:26

from 1841 through 1930. >>JEN: To 1930. Great.

1:42:31

>>CAITLIN RAMOS: Always reported at the municipal  level, and if there is no disaster, records are 

1:42:37

lost, the city clerk's offices would retain their  original copies, but yes, the State Archives has 

1:42:44

state copies from 1841 to 1930, and we do receive  them in () from the Registry of Vital Records has 

1:42:56

the State copies from 1931 to the present. >>JEN: Okay. Thank you for the 

1:43:02

clarification, Caitlin. >>CAITLIN RAMOS: Sure.  >>JEN: Other questions or comments? Okay.  Why don't we move on to the next slide.

1:43:17

And we will talk a little bit about cemeteries,  and I'm watching the time, everybody. We don't   have much more left of the presentation. So the next slide, please.

1:43:29

Okay. So during the late 1800s, early 1900s, there  were big outbreaks of diseases in Massachusetts, 

1:43:38

like typhoid fever in the 1890s, diphtheria,  and the Spanish Flu in 1918. And these epidemics 

1:43:51

caused many deaths in the institutions. Because  so many people were dying, including those from 

1:43:58

the towns surrounding the institutions, many towns  asked the institutions to start creating their own 

1:44:07

cemeteries to handle all the burials. And this  slide shows the examples we found from the State 

1:44:13

institutions where they had to stop using the town  cemetery, and we have examples of Worcester State 

1:44:20

Hospital, Medfield State Hospital, and Fernald,  the Massachusetts School for the Feebleminded. 

1:44:29

So it really did impact where people were  buried, the big outbreaks of illnesses.

1:44:40

So now we would like to take a moment just to  show you a couple of additional documents that 

1:44:46

were attached to the meeting materials. Christine, can you put up the listing of   cemeteries where people were buried? Thank you.

1:45:01

These are the cemeteries that we have  found to date. I don't know that we need 

1:45:09

to read through the whole list, but they are  attached to the meeting materials for today.

1:45:16

If folks can think of other cemeteries that we  have missed from this list, it would be helpful to 

1:45:23

send us an email or reach out and we can take a  look at that and include it on the research list.

1:45:32

But right now we have 27 different cemeteries, and  some of these cemeteries are on the institution's 

1:45:42

property, while others are in the town or  the city where the institution was located.

1:45:52

>>KATE BENSON: Jen, this is Kate. Bridgewater  is missing an E. And you gave it to Gardner. 

1:46:01

Gardner doesn't have an E. >>JEN: Thank you. Gardner.  >>LAURI MEDERIOS: I'm wondering whatever one  does know about this list of 27, I have 19, 

1:46:18

but there must be more, and to get to that  27 number. Is there an estimated total of 

1:46:28

individuals with spread out all among  these institutional cemeteries, do you   know? Not what the number is, but in general? >>JEN: The research that Pat Deegan's group did 

1:46:42

back in the '90s, they really started this  process of taking a look at primarily for 

1:46:49

the DMH facilities, they estimated just on DMH  about 10,000 patients buried across the State.

1:47:03

>>LAURI MEDERIOS: Wow. >>JEN: So we don't have a I'm hoping that we will   have a more solid number as we get deeper into the  research, but at this point more than 10,000, less 

1:47:18

than 20,000. It's kind of a big range right now. >>LAURI MEDERIOS: Okay. Thank you.

1:47:26

>>JEN: Okay. The next thing I wanted to just show  you briefly is an example of one of the cemetery 

1:47:38

profiles that we are developing. And this is based  on the gap analysis that we shared in previous 

1:47:49

Commission meetings. That was created by the  Burials Workgroup. You in the packet you had an 

1:47:57

example of Northampton and Tewksbury. We will  show you Northampton, there is a lot of research 

1:48:08

into that cemetery, and it is well documented in  the preservation guidelines for historic burial 

1:48:18

grounds and cemetery that Massachusetts  Department of Conservation prepared.

1:48:24

So this is how the profile of the hospital  cemeteries will look. And we talk about, you know, 

1:48:33

are from is the hospital known by different  names, where it is located, we are including 

1:48:40

things like was it an institutional cemetery or  was that a public cemetery, information about how 

1:48:48

many people are estimated to be buried there,  description of the cemetery, who owns it or 

1:48:56

manages it. And we talk about the condition of the  cemetery, and the condition of the grave sites.

1:49:07

And that actually goes on to a second page,  Christine, if you want to scroll down.  And then we talk a little bit about the cemetery  conditions. Over time we talk about has there 

1:49:18

been vandalism evident on the grounds, and then,  you know, we included the piece about unmarked 

1:49:27

graves specifically for Northampton because they  have done quite a bit of research on the grounds 

1:49:35

to confirm where people were buried. So that's just an example of what we 

1:49:43

are hoping to prepare for each of the  cemeteries associated with any of these   institutions. So any questions or feedback? >>LAURI MEDERIOS: This is Lauri Mederios 

1:49:56

again. It makes me wonder under Chapter 113 laws  permitting citizens () who died in State Hospitals 

1:50:05

to be sent by cadavers to medical schools, so  they won't be in the count in the cemetery.

1:50:11

>>JEN: That's a great point. We are meeting with  the anatomical sciences group at Harvard. There is 

1:50:23

a cemetery in Tewksbury called Pine Hill where  bodies of people who don't who donated their 

1:50:33

bodies to science are buried. And it is managed  by Harvard, Tufts, BC, and UMASS. Or BU and UMASS 

1:50:45

medical schools. So we don't know a lot about  that cemetery yet. We are meeting with them next 

1:50:52

week to learn more. But that's a great point.  There could be a lot more information there.

1:51:03

Okay. Any other feedback or questions?  In the interest of time, I'm

1:51:12

>>LAURI MEDERIOS: I just have one  more question, and I can you know,   maybe somebody offline or whatever, I could ask  this question to, but I wonder if there is ever 

1:51:22

been a way to capture, here are the number  of inmates, whatever, residents, patients, 

1:51:31

whatever the language was, and here are the number  of individuals either in the Harvard, you know, 

1:51:39

cemeteries for those individuals donated there,  or the cemeteries on the grounds, if there is a 

1:51:46

difference in that number. You know what I mean?  Is it one for one, here is Patient 1, here is 

1:51:53

their death certificate, here is where they  are buried. Because I imagine there could be   a disparity that we have 1,000 patients and  we can only account for the location of 600 

1:52:05

individuals or something like that. I think that >>JEN: Yes. Yes, thank you, Lauri. I think that's 

1:52:13

been attempted over time, but I think there  are challenges, and especially in some of the 

1:52:18

older institutions because records have gone  missing. You know, for example, Tewksbury, 

1:52:24

there was a fire, or maybe it was Danvers, I  apologize, there was a fire, so there is about 

1:52:29

30 years of records that have disappeared. So yeah, I don't know that we will ever 

1:52:35

be able to do a one for one. Emily, do you have your hand up?

1:52:40

>>EMILY LAUER: I just wanted to comment related to  Lauri's question. So in many cases, family members 

1:52:46

were able to receive the bodies of their loved  ones and bury them in family plots or local plots, 

1:52:52

and so I'm not sure how well we could  reconstruct that course, the match, 

1:52:58

unless we also had the information about  who was released to their family for burial.

1:53:05

>>JEN: Yeah. I think that's an important  clarification. This is Jennifer again. That 

1:53:13

really these are the people who did not have  the means or the family to bury them elsewhere.

1:53:26

Okay. Does the Commission want to just  hear the last piece around the future 

1:53:33

research that we have or should  I hold that to the next meeting?

1:53:39

>>MATT MILLETT: This is Matt. I think we hold  it to the next meeting. () we are past 4:30.

1:53:46

>>JEN: Well, thank you for giving  us time to present on the report.

1:53:51

>>MARY MAHON McCAULEY: Could I just add one more  thing? This is Mary. I was just thinking that in 

1:53:58

reality, thinking through all of these decades and  the laws and how the system was paper and pen or 

1:54:05

pencil for so many years, I think that it was the  people that were buried at the institutions the 

1:54:14

bodies that were used for medical science,  or otherwise, it was the individuals that 

1:54:22

didn't have family and didn't have the means for  private burial, but it was also the people who 

1:54:29

they didn't have a current address for the family,  they didn't the clerk didn't write a letter to the 

1:54:36

family because the clerk wasn't doing their job  properly. Or, you know, there are so many other 

1:54:44

factors that could have been involved in not  locating a family or trying to locate a family 

1:54:53

or whatever the case may have been. >>LAURI MEDERIOS: Pretty 

1:55:05

sobering stuff, said Lauri Mederios. >>MATT MILLETT: [ off mic ] that report is 

1:55:14

very thorough, yeah. A lot of stuff to go through. >>LAURI MEDERIOS: Fascinating information. Sad, 

1:55:20

but fascinating. >>MATT MILLETT:

1:55:25

[ Simultaneous Conversation ] >>KATE BENSON: This is Kate. 

1:55:33

Before I close I had a conversation with Alex  prior to the meeting, obviously he couldn't 

1:55:39

be here. We wanted to suggest that we create a  separate Workgroup to edit, to work on editing 

1:55:48

the burials report and the other reports that  will come out from the Workgroups that will go   into the final Commission Report. To just have  a group of extra eyes on those reports. And I 

1:56:02

don't know if it is appropriate to make that  motion today to potentially create that group 

1:56:07

or how we would move forward, but I just wanted  to make sure that Alex's suggestion was heard.

1:56:21

>>ANDREW LEVRAULT: I think we  only have one additional meeting,   correct, in October to review the potential am I  confusing that another Commission? I apologize.

1:56:31

>>MATT MILLETT: We have two, actually. One  in October 17th and November 14th. And we 

1:56:39

have December, a hole for December 3rd. >>ANDREW LEVRAULT: I wanted to make sure 

1:56:48

we weren't bumping up against deadlines. >>MATT MILLETT: We set up each month 

1:56:57

because () coming up right now. We need a motion to create the 

1:57:08

Workgroup ourselves, set up the  email. Asking for volunteers.

1:57:19

>>ANDREW LEVRAULT: I will make a motion  create a Workgroup to reviewing the   draft are reports from the various  subcommittees before they are submitted for 

1:57:26

the Annual Report. Sorry, this is Andrew Levrault. >>MATT MILLETT: Thank you. Can I have a second?

1:57:40

>>LAURI MEDERIOS: This is  Lauri Mederios. I second that.  >>MATT MILLETT: We will do a roll call ()  Workgroup or Workgroup for the sorry. I would 

1:57:58

like to read the names of the role call, please. >>EVELYN MATEO: Elise, I think, left. Kate?

1:58:06

>>KATE BENSON: Yes. Anne? Bill? >>BILL HENNING: Yes.

1:58:18

>>KATE BENSON: Andrew? >>ANDREW LEVRAULT: Yes.  >>KATE BENSON: Mary? >>LAURI MEDERIOS: Yes.  >>KATE BENSON: Lauri? >>LAURI MEDERIOS: Yes.

1:58:23

>>KATE BENSON: Caitlin? >>CAITLIN RAMOS: Yes.  >>KATE BENSON: Brenda? Matt? >>MATT MILLETT: Yes.

1:58:43

>>EVELYN MATEO: Myself, yes. >>MATT MILLETT: Please 

1:58:55

email [ off mic ] to do that. >>EVELYN MATEO: Thank you, 

1:59:03

everyone. And in our final minutes we want to  remind everyone that we have a scheduled meeting, 

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next full Commission Meeting for Thursday, October  17th, at 2:30. Does that work for everyone?

1:59:22

>>MARY MAHON McCAULEY: Yes. >>LAURI MEDERIOS: Yes.

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>>ANNE FRACHT: Yes. >>EVELYN MATEO: If members have any questions   before, then you shall feel free to contact us. >>MATT MILLETT: Have any questions or comments, 

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and we can try and help you. If no other items  to discuss today, we can vote to adjourn.

1:59:58

>>LAURI MEDERIOS: Motion to adjourn. >>MATT MILLETT: Yes. First. Thank 

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you. Can I have a second, please? >>ANDREW LEVRAULT: I will second. Andrew Levrault.

2:00:37

>>MATT MILLETT: Roll call. >>EVELYN MATEO: Elise, she is not here. Kate?  >>KATE BENSON: Yes. >>EVELYN MATEO: Anne?  >>ANNE FRACHT: Yes. >>EVELYN MATEO: Bill?  >>BILL HENNING: Yes. >>EVELYN MATEO: Andrew?  >>ANDREW LEVRAULT: Yes. >>EVELYN MATEO: Mary?  >>MARY MAHON McCAULEY: Yes. >>EVELYN MATEO: LAURI?  >>LAURI MEDERIOS: Yes. >>EVELYN MATEO: Caitlin?  >>CAITLIN RAMOS: Yes. >>EVELYN MATEO: Matt? And myself,   yes. [ Simultaneous Conversation ]

2:00:44

>>MATT MILLETT: Thank you, everyone. Meeting  is adjourned. See you October 17th. If not   before for Workgroup. Have a nice day. >>MARY MAHON McCAULEY: Bye, everyone.