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

0:01

>> MATT MILLETT: Good afternoon, everyone.  I would like to call this meeting of the 

0:06

Special Commission on State Institutions  to order. My name is Matt Millett, and I 

0:13

am one of the Commission's two co chairs. As usual, before we begin, I would like to let   you know that this Commission meeting must  follow the Open Meeting Law. Any votes taken 

0:22

during the meeting must be done via roll   call vote. We ask the Commission members 

0:27

to please mute themselves when they are not  speaking and use the Raise Hand feature if they 

0:34

would like to ask a question or to speak. Before speaking, please state your name; 

0:40

that way everyone will know who's talking. For any  questions from the audience in the Q&A for this 

0:45

meeting, CDDER will be reviewing the questions  and holding them until the end of the meeting.  

0:51

Today's meeting is scheduled for two hours. We  will take a break midway through the meeting.  

0:56

We hope everyone has taken a moment  to view the agenda. These are the   items we will be discussing today. We have CART services supporting us 

1:08

today. These are captions that help people  follow the discussion. If you need help   turning on the captions, please let us know. We ask that people to speak at a non rushed 

1:18

pace and provide yourself with a brief pause for  the CART transcriber to write what you said.  

1:28

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

1:38

We will try to remind folks of these items  I just mentioned, if needed, during this   meeting and to keep us on track. At the very end of this meeting, 

1:48

we will have notes made available  based on what we talked about today.   This meeting is also being recorded  and the videos are available on the 

1:55

Commission's mass.gov page and on YouTube. My co chair, Kate, is sick today, so she's not 

2:04

here; I'll be talking the whole meeting. I would like to invite Emily from CDDER to 

2:10

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

2:16

>> EMILY LAUER: Thank you very much, Matt. In the last meeting, the Commission discussed 

2:23

roles and the next phase of their work. They had a  discussion about some additional leadership roles 

2:30

and made two votes. One was to approve a  secretary position and appoint Mr. Alex Green 

2:38

to that position. The second vote was to approve  the role of vice chair to the Commission.  

2:46

It was also announced that the  workgroups have completed as the 

2:51

tasks they were charged with are now done. There are final updates given from those be 

2:59

workgroups. From the records and records access  workgroup there was a discussion on the ground to 

3:07

the original letter to Secretary Walsh and the  drafting of a response. After that discussion, 

3:13

there was a vote where there was an approval for  sending the draft reply to Secretary Walsh.  

3:21

There was also a discussion of a tool that  was in development for gathering information 

3:27

about records from DMH and DDS. This tool is  to help identify the types of records that 

3:35

exist from these agencies, their storage  conditions, and whether any records had 

3:40

been approved for destruction. The burials and burial location 

3:45

workgroup discussed several areas, including  veterans who were buried in state cemeteries; 

3:54

National Register of Historic Places, including  areas of burial related to former institutions; 

4:05

public access trails and cemeteries that coexist;  as well as some questions from Commissioners. A 

4:12

framework for a remembrance workgroup discussed  a presentation by Pat Deegan and Devon Anderson 

4:21

in September, and a presentation from Alex  Green on the MetFern Cemetery in November.  

4:28

From there, there was a discussion with the  Commission of the burials, burial location, 

4:34

additional area for research; and there was a  summary presentation of the rest of the draft 

4:43

report that was shared with the Commission  as prepared by CDDER, summarizing facts from 

4:50

history and from recent days on the timeline  of different bodies and governing bodies of 

4:57

state institutions and other information  related to the charge of the Commission.  

5:03

Thank you, Matt. >> MATT MILLETT: Thank you,   Emily. This is Matt again. Before we get into this afternoon's 

5:10

discussions, we have our vote on the minutes from  the Commission's last meeting back in November. 

5:16

Draft copies of the meeting minutes were emailed  to members earlier this week. Do any members 

5:23

have suggested changes to these minutes? If not, we can proceed with the vote. As usual, 

5:34

we will be conducting a roll call vote, so  if everyone could please unmute themselves, 

5:40

Kate from CDDER will now call out  your names in alphabetical order.   >> KATIE GULLOTTI: Thanks, Matt. Good afternoon, everyone; this is Katie Gullotti 

5:51

from CDDER. I will read out members' names  in alphabetical order by your last name  

5:59

>> MATT MILLETT: Katie, I need to stop  you for a second. This is Matt. We need to   have a motion to approve the minutes. >> KATIE GULLOTTI: Oh, sorry about that.  

6:07

>> MATT MILLETT: My fault; I  failed to do that. Sorry.   >> KATIE GULLOTTI: That's okay. >> ALEX GREEN: This is Alex. I'll 

6:13

make a motion to approve the minutes. >> MATT MILLETT: Thank you, Alex. Do I have   a second to approve the minutes? >> This is Andrew. I'll second.  

6:20

>> MATT MILLETT: Thank you. Okay, Katie; now you're up. Thank you.   >> KATIE GULLOTTI: Okay. I'll now read  your names in alphabetical order by your 

6:27

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

6:35

Elisa Aronne? >> Present.  

6:40

>> KATIE GULLOTTI: Kate  Benson? Oh, she's not here.  

6:45

Sister Linda Bessom? Reggie Clark?  

6:53

>> Here. >> KATIE GULLOTTI: James Cooney?  

7:02

Samuel Edwards? >> Here.  

7:09

>> KATIE GULLOTTI: Anne Fracht? >> Here.  

7:16

>> KATIE GULLOTTI: Alex Green? >> Here.  

7:21

>> KATIE GULLOTTI: Bill Henning? Andrew Levrault?  

7:28

>> Yes, approve. >> KATIE GULLOTTI:   Thank you. Mary Mahon McCauley? >> Hi, this is Julia O'Leary from Mass. Office 

7:39

on Disability. I'm here in Mary's place today. >> KATIE GULLOTTI: Okay. And what was your name 

7:52

again? >> It's   Julia O'Leary, general counsel. >> KATIE GULLOTTI: Thank you, Julia.  

8:02

Evelyn Mateo? Lauri Mederios?  

8:09

>> Present. >> KATIE GULLOTTI: Matt Millett?  

8:20

>> Approve. >> KATIE GULLOTTI: Vesper Moore?   >> Present. >> KATIE GULLOTTI: Brenda Rankin?  

8:28

>> Here. >> KATIE GULLOTTI: Thank you.  

8:36

>> MATT MILLETT: This is  Matt. Did we miss anyone?  

8:41

Thank you, everyone. The minutes are approved.  As a reminder, copies of the approved minutes   and all the materials from our Commission meetings  are available on the Commissioner's Web page.  

8:57

At the last meeting of the Special Commission, we  voted to approve the role of secretary and vice    chair. Alex has been voted in as Secretary for the  Special Commission. The vice chair role is still 

9:09

vacant. The vice chair would be a helpful role as  the vice chair to step in as a co chair if Matt, 

9:14

or in this case, Kate. As Kate is sick, that way  I'll do all the talking, because I love talking.  

9:23

The vice chair could also help by working  with the co chairs regularly and reaching   out to members before meetings  to make sure everyone attends.  

9:30

I'd like to open this up for discussion. Would  any members of the Special Commission like to 

9:35

step into this leadership role? >> LAURI MEDEIROS: Matt, I'm sorry; 

9:53

it's Lauri Medeiros. Could you repeat  that? What are we doing right now?  

9:59

>> MATT MILLETT: This is Matt Millett  again. At the last Commission meeting, 

10:05

we voted to approve the role of secretary,  which Alex was willing to step into. Then 

10:10

we voted to approve the vice chair,  which no one was willing to step into.   The vice chair will be a help  for me and Kate, because of the 

10:20

[ ] upcoming, and that's in six months, five  months, and it's very important. We had to do   a lot of questions, emailed back and forth. I work nights, so obviously [ ] during the day, 

10:30

so we would like a second person to help out if  Kate is unavailable, too. So one of the roles of 

10:38

the vice chair is to help me and Kate out in case  we need it, because the work getting covered until 

10:45

the end of the term is very important. If no one steps up to be vice chair, 

10:50

we can table it; but I would like if someone  would step up, because I think it would be a 

10:57

very important role coming up, where CDDER has  taken a back step or stopped doing work for us, 

11:04

and the Commission chairs had to do all the  work, just as a help for me and Kate.  

11:11

Does that answer people's questions? >> LAURI MEDEIROS: Thank you, Matt. Thank you.  

11:33

Can I ask just one question about this? It's okay  if folks don't know. Just as a point of reference, 

11:47

how much time might be expected in this role? >> MATT MILLETT: Of vice chair?  

11:56

>> LAURI MEDEIROS: Yes. >> MATT MILLETT: Hopefully not a lot,   but Kate and I, as we were talking, we would like  a breakup in case we need to email someone on the 

12:09

Commission right away, say like at 1:00 in the  morning; I'm asleep, Kate is working. Hopefully 

12:14

that vice chair will be able to email it to me. I don't know the answer to the time frame, but it 

12:21

wouldn't be as much as Kate and I. We'll still  be the co chairs. Alex, as the secretary, will 

12:27

write everything down and he would send it to us,  and we will send it out. [Indiscernible] to send 

12:34

an email out to the Commissioners. >> LAURI MEDEIROS: Okay. Thank you, again.  

12:59

(Pause) >> MATT MILLETT: 

13:13

I'll ask, as the co chair I was going  to say, I would like to table this. We'll 

13:24

take it up at the next meeting. Thank you. So, upcoming work of the Commission, the Special 

13:33

Commission: The next item we wanted to discuss  in this meeting is the schedule for 2025.  

13:40

We need to finish our review of the CDDER report  and give them our feedback so that they can finish 

13:45

their report and send it to the Commission  on January 15. After that, we need to make 

13:51

our own recommendations and a final report for  the state legislature that is due on June 1st. 

13:57

We need to agree on how often we need to  meet and the best days and times for these   meetings. We should also consider how  long we want these meetings to last.  

14:05

Do we want to ask CDDER to create  a short poll to figure out the best   days and times to meet in advance, or do  you want to talk about it right now?  

14:17

Can you go to the next slide, please? >> ALEX GREEN: This is Alex. Just in terms 

14:32

of the scheduling, when the new year starts,  I think we are going to want to meet monthly, 

14:39

and I think we're going to need to as we move  forward to finalizing the report. I think 

14:49

getting the details in the monthly meeting down  is probably best left to scheduling by email with 

14:56

CDDER sending that around, if that's possible. But just to clarify, we're looking toward a 

15:05

finalized report from CDDER in January. We  have until June 1 to make recommendations 

15:11

based on what the report's findings are. Those recommendations we will have to draft 

15:16

as a Commission, and we'll have to approve those  and go through them all, and then both the report 

15:27

and the kind of summary of the Commission's  findings and takeaways will be submitted to 

15:33

the legislature. That's correct; right? >> MATT MILLETT: Alex, this is Matt. I   believe that the legislature has to  receive the report by June 1st.  

15:41

So CDDER will send us their recommendations  on the report by January 15th. By mid May, 

15:50

hopefully we'd like to have our recommendations  done. That way, you can write everything down; 

15:57

then late May, we have a final Commission  meeting for all the recommendations; 

16:03

and by June 1st we send it to >> ALEX GREEN: To the legislature?  

16:13

>> MATT MILLETT: To the Senate, House, Joint  Commissioners, and a couple other people.  

16:19

>> ALEX GREEN: That's helpful. So starting  basically in February is when we're going 

16:25

to want to have read the report, all of  us, in some way or another, or some of us 

16:32

should probably volunteer to read for others and  explain for others and go through it with them, 

16:37

and then start to take up the questions in  February of what the recommendation is.  

16:46

>> MATT MILLETT: Yes. So by late January, we  hopefully will have CDDER's letter by then.  

16:59

Lauri, do you have a question, a raised hand? >> LAURI MEDEIROS: Yes. Just real quick: Are there 

17:07

two separate tracks? One, the report, the final  report, and the submission of that report; and any 

17:18

preliminary conversations about extending the work  to the legislators? Because I know their fiscal 

17:29

year ends June 30th, but if there's anything that  needs to be on the radar, that's a really narrow 

17:35

window. Or are they two separate tracks? >> MATT MILLETT: Lauri, what do you mean 

17:41

by two separate tracks? >> LAURI MEDEIROS: Is there a   legislative like let's, you know, address some  of the legislators to ask them to be prepared 

17:55

to have us extend the work if that's what the  recommendations are? And/or any budget requests, 

18:04

if that's what the recommendations are? Is that something that happens side by side 

18:10

with the written report, or is it the written  report embedded in there are those things?  

18:18

>> MATT MILLETT: I think that one is just  what we happen to have. The main report, 

18:23

the main issue of the report will be what  we recommend. If we recommend more time, 

18:29

then we ask for that, or more money, so.... Does that answer your question, Lauri?  

18:35

>> LAURI MEDEIROS: Yeah, it does. And I just  want to say that, not that I want to rush a   process that I'm not even involved in; it just  seems like a narrow window, because by June 30th, 

18:49

we've got the new year, July 1st. So I'm just mindful of the timeline, if that 

18:55

feels very crunchy. You know what I mean? >> MATT MILLETT: Yes, I do. By June 2025, 

19:04

we have two and a half, three years on this.  That's why this is kind of due July 1st. So we 

19:10

started off a little slow, but we ramped up; so  now that CDDER's almost done, we'll take on the 

19:18

work ourselves and go from there. Yes, June 1st is a tough date 

19:23

because well, let's say June 29, 30th is the  end of the year. July 1st is the new year.  

19:30

>> LAURI MEDEIROS: Okay. That's all. Thank you. >> MATT MILLETT: Alex, 

19:38

you have your hand raised? >> ALEX GREEN: Thank you; this is Alex.   We have some flexibility in there, too, in the  meetings between February and May, where if we 

19:48

wanted to consider and take up and vote on  the idea of sharing draft material with the 

19:57

legislators, we have the two legislative sponsors  who kind of pushed the initial creation of the 

20:03

Commission through. Sharing some of it with them  or having meetings with them, as long as it's done 

20:11

appropriately to the Open Meeting stuff, there's  nothing that really stops us from doing that.   So I don't envision that all of the  recommendations will be ones that require 

20:23

legislative action; but for the ones that did,  like the idea of if it becomes something that 

20:30

the Commission wants, is to extend the work of  the Commission, there are ways to make sure that 

20:36

that's not a big surprise when the report is  actually filed on June 1st as well. So we have 

20:42

some flexibility when we get to February. >> MATT MILLETT: Thank you, Alex.  

20:49

>> LAURI MEDEIROS: You put that  better than I did. Thank you, Alex!   >> ALEX GREEN: Sure, happy to. >> MATT MILLETT: So just to recap, 

20:56

this discussion is about the work and about the  timeline of the meetings coming up. Hopefully 

21:03

everyone can read that. Monthly would  probably be best because we have a lot   of work to do in the next six months. Well,  after the holidays we'll have six months.  

21:14

I'll have CDDER send out a poll this week to gauge  a date and time that works for everyone. It seems 

21:23

like 3:00 to 5:00 is the best time frame; Tuesday,  Wednesday, Thursday, because Friday is usually not 

21:30

your time, and Monday is tough after weekends. So  CDDER will send out a poll this week. Thank you, 

21:37

everyone, unless anyone has more questions or  comments about the schedule of meetings.  

21:50

So the next topic the last topic, sorry, we  wanted to talk about is the report of the Report 

21:56

Review Working Group. The Special Commission  voted to approve the Report Review Working 

22:04

Group at the September meeting. The purpose  of the working group is to collect feedback,   comments, and edits on the CDDER draft report.  The working group is looking for two or three 

22:14

additional Commission members. So kind of what Alex was talking about,   after we receive the report, we can  have the workgroup will look it over, 

22:24

talk to others and get feedback. Are there any commission members who   would like to participate in this workgroup  besides the couple that are already there?  

22:36

You don't have to answer now.  You can email sorry, James.  

22:45

>> JAMES COONEY: I would be interested. >> MATT MILLETT: Thank you.   So, James, can you just email CDDER? That way  you can make sure you're on the email list.  

22:53

>> JAMES COONEY: Okay, sure. >> MATT MILLETT: Thank you.  

23:10

Thank you, everyone. Next, I would like to ask  CDDER to lead the discussion regarding the first   draft of the report they've been working on. I'm not sure; is that Emily? I'm not sure who 

23:23

is speaking right now. >> JENNIFER FUGLESTAD:   It's Jennifer. I'll start. >> MATT MILLETT: Sorry, Jennifer.   >> JENNIFER FUGLESTAD: Thank you, Matt. This is Jennifer from CDDER. And if we can 

23:35

we're going to review the report that we sent  out by email on September 30th, and we're going to 

23:43

start off where we left off at the last meeting,  and we'll go through the slides together.  

23:51

We will stop and pause for feedback and questions  periodically. You can also send questions and 

23:58

feedback directly to CDDER via the  SCSI email address, if you prefer.  

24:06

Next slide, please. Thank you. Again, we wanted to warn you about the use of   words in this presentation. Some of the words that  are used are offensive to us, but we are using 

24:17

them some of the terms that were used over  the history of the institutions. For example, it 

24:24

was common to refer to people who lived in one of  these institutions as inmates. And there are other 

24:30

words that are offensive that were used, like  lunatic and feeble minded. Next slide, please.  

24:39

So, last month we left off at the tail end  of the evolution of the governing bodies of 

24:46

state institutions, and we are going to try  to get through the remainder of this report 

24:53

today and hopefully cover the Framework for  Remembrance as well. Next slide, please.  

25:02

Okay. So in 196, the Acts of 1916 established the  Massachusetts Commission On Mental Diseases which 

25:15

replaced the Board of Insanity. This  was a new Commission that was tasked 

25:21

with overseeing mental health services and  managing the transfer of records and books 

25:29

and property from the Board of Insanity. In their first annual report, the Commission 

25:38

on Mental Diseases talked about how important  scientific research was at the School for the 

25:43

Feeble Minded in Waltham and focused on looking  at different things like a person's health, their 

25:50

family background, progress made in school, their  intelligence and behavior, as part of studying 

25:58

the people who lived at the school. An Act to Provide for the Establishment 

26:05

of Free Clinics and a Registry for the Feeble   Minded was also set up. They established free 

26:12

clinics for people who were, quote unquote,  "feeble minded," and these clinics would be   run by doctors who worked at the state schools. The Commission also kept a private list of people 

26:23

in this group that was meant to be shared only  with the correct officials in order to help with 

26:31

tracking information and organizing care for  people in this group. Next slide, please.  

26:43

In 1919, the Commission on Mental Diseases was  replaced with the Department of Mental Diseases. 

26:55

This was part of a bigger effort to reorganize all  the state's departments, so there were many state 

27:02

divisions and departments, over 100, and they  condensed it down to no more than 20. And in 1923, 

27:14

the Department of Mental Diseases introduced  two new divisions. One was the Division of 

27:21

Mental Hygiene and the other was the division  for the feeble minded, which was later called 

27:27

the Division of Mental Deficiency in 1926.  That was really replacing the old term, 

27:34

"feeble minded," reflecting both changes in  language and how the agency was organized.  

27:43

Do we have any questions on this final piece  of the evolution of governing bodies?  

27:56

Okay. Next slide, please. So this next section talks a bit 

28:08

about the types of information collected at these  various institutions. The state hospitals and 

28:16

schools maintained in some cases pretty detailed  records about their patients. A lot of times the 

28:24

records would include demographic information, for  example, marital status, where a person was born, 

28:32

their physical and mental health information; it  would also include information about whether the 

28:39

person had been previously committed and how  they were committed. And they often contained 

28:45

correspondence between the institution and  the family, and sometimes you're able to find 

28:51

discharge papers or death certificates. A pretty  standard practice was to assign each patient a 

28:59

unique number for recordkeeping purposes. Annual reports from the institutions included 

29:09

financial details, the number of commitments  that turned into admissions for the hospital, 

29:19

transfers, releases and deaths. Each department  head would provide reports of the work of their 

29:29

department. For example, the chaplain  would write a report each year as well   as social workers, the social work department. There would also be a report on the conditions of 

29:42

the buildings as well as requests for funding in  terms of improving the institution or expanding 

29:49

it. And these annual reports also described the  types of care people received and the typical 

29:59

mental health conditions or the  general health of the people living   in the institution. Next slide, please. So we're still trying to establish when 

30:12

this law was first made, but since the  late 1800s, Massachusetts General Law 

30:20

has required that government entities provide  fire resistant and fireproof rooms, safes, 

30:26

or vaults for safeguarding public records.  And you can see evidence of that in annual 

30:33

reports documenting those requests for funds to  comply with the record storage requirements.  

30:39

One example was from 1916, from Grafton State  Hospital; and the other is from 1923, from the 

30:49

superintendent at the Belchertown State School.  Both requesting funds to either build or obtain 

30:56

a fireproof room or vault. Next slide, please. In 1918, we'll talk a little bit here about the 

31:09

Special Committee of Superintendents  for Uniform Records. So this special 

31:14

committee was formed to standardize  recordkeeping across the institutions.  

31:20

By this time, the institutions were using uniform  record cards for admissions and discharges. 

31:28

And we found evidence in a number of the annual  reports that talked about the improvements that 

31:35

were made on how the records were being kept. So in the Boston Psychopathic Hospital, 

31:41

that report detailed how clinical histories  were being collected and it also made 

31:49

sure that records were easy to access. Worcester State Hospital documented the weekly 

31:57

clinical meetings to review patient summaries  as well as physical and mental health findings, 

32:03

and social service reports. Grafton State Hospital, in 1919, 

32:09

began using typewritten pathology records,  which were organized into volumes.  

32:18

Boston State Hospital documented how  patient records were being maintained   in a chronological order, including all  the patient history and actions taken.  

32:28

And social work recordkeeping was also improved.  At the State House there were meetings held every 

32:35

three weeks to discuss cases and create  a uniform filing system. And guides were 

32:41

created to step standardize social histories  and investigations. Next slide, please.  

32:52

As we researched the types of practices that were  in place at the institutions for recordkeeping, 

33:01

we were able to review a book called A Brief  History of the Taunton Lunatic Hospital, 

33:08

18 54 to 2016, written by Joseph Langlois  who was a former employee of Taunton State 

33:16

Hospital. That book contains a chapter that  provides an in depth look at the evolution 

33:26

of the medical records at Taunton State. And it really illustrated how documentation 

33:34

and quality air changed over time. Mr. Langlois conducted really an informal 

33:40

analysis of a sample of medical records that  are stored at Taunton State Hospital, and he 

33:46

was able to describe a gradual improvement in  the quality and thoroughness of medical records, 

33:52

shifting from very brief, sparse documentation  to more detailed, structured records.  

34:00

We know that through interviews with key  informants, our team here at CDDER learned 

34:06

that DMH keeps old inpatient admission cards  in alphabetical order by patient name and the 

34:13

year they were admitted, and these records also  include information about the patient's death, 

34:19

if they died while in the institution. However, it isn't clear about how long the 

34:27

records sorry; clear information about  the records that are stored at Taunton or 

34:33

the specific periods that they cover. We do know that some of the records from 

34:38

Taunton and Foxborough are securely stored  at Taunton State Hospital. Next slide.  

34:47

Any questions on this section of the report? Okay. Next slide, please.  

35:00

Okay. We'll start here to talk about  the Massachusetts Public Record Law.  

35:11

So the law in Massachusetts is based on the  premise that everyone has the right to see public 

35:17

records held by the state and local government  offices. It allows citizens to look at, copy, or 

35:25

get copies of the records for a reasonable fee. Public records may include many types of materials 

35:33

made or received by government offices.  It can be books, it can be papers, maps, 

35:39

photos, financial records, and other  documents, like the annual reports.  

35:46

Most records held by the government are  open to the public unless there's a special   reason not to share them. That's really  to show that our government is transparent 

35:58

and is working on what they have said  they'll be working on. Next slide, please.  

36:06

There are some exemptions to the  Public Records Law. There are some 

36:12

things that are not made available to the  public, because sharing them could either 

36:17

break a law or invade somebody's privacy. So some of the more important examples of 

36:24

exceptions that really relate to the work of the  Special Commission include personal identifying 

36:31

information. So personal details, like a person's  name, Social Security number, their address, 

36:38

are kept private to protect a person's privacy. Juvenile delinquency records, authorizes kept 

36:47

private as well and are not  available to the public.   And the same as far as Criminal Offender  Record Information information, or CORIs. 

36:58

Those are not public unless allowed by law. Medical records that contain private health 

37:07

information are private. And there's specific  language apparently on institutional records 

37:18

that are exempt from the Public  Records Law. Next slide, please.  

37:27

So who oversees the public records? All of our  public records are managed under the Secretary 

37:34

of the Commonwealth. The Records Conservation  Board is a group that helps oversee important 

37:44

public records, records that come from different  agencies such as DDS and DMH. And the Records 

37:52

Conservation Board makes the rules about how  state agencies should keep their records.  

38:02

The RCB is what Records Conservation Board goes  by. They have a long list of how long different 

38:13

kinds of records should be kept, and that's called  the Statewide Records Retention Schedule. The 

38:20

Records Retention Schedule let's agencies know  how long records need to be kept; and agencies 

38:30

can keep records they need or send them to  the Mass. Archives to be saved long term.  

38:39

For records that are created by DDS and DMH, for  example, the agencies must apply to the Records 

38:48

Conservation Board to request when a record set  is transferred to the archives or destroyed.  

38:56

And this process includes consulting with  the agency commissioners and following very 

39:02

specific procedures that the RCB has outlined. Some records from state institutions, especially 

39:10

from closed institutions, were destroyed in  the past; and this happened when rules allowed 

39:16

certain types of records to be destroyed. However, the exact list of records that were 

39:23

destroyed isn't fully known yet. That's  something that we're working on, and we're   making a request to find out which records were  officially destroyed. Next slide, please.  

39:42

I apologize; Supervisor of Records can you go  back one slide, please? I apologize. Thank you.  

39:50

The Supervisor of Records is another  important role within the overseeing 

39:58

records. They're responsible for ensuring  that public records are properly managed, 

40:04

that they're accessible and preserved in line with  the state's Public Records Law. This position is 

40:10

appointed by the Secretary of State and has  the authority to enforce the law and guide 

40:16

state agencies on handling government records. The supervisor often is in the role to decide if 

40:23

a government record should be made public  or if it's exempt from being shared under   the Public Records Law. If someone is  denied access to a public record, the 

40:33

supervisor oversees the appeal process to decide  if access should be given. Next slide, please.  

40:44

The Records Management Unit helps to make  sure government records are stored safely 

40:49

and kept in a safe environment for the long  term. The Records Management Unit works with 

40:57

state agencies to manage and protect records  so that people's privacy is protected.  

41:04

It also gives advice on how to store  records, rules for electronic data; 

41:11

it gives advice on how to save materials that  get wet and how to plan for emergencies.  

41:19

Another role is Records Access Officers.  They play a key role in helping people 

41:25

access public records. The Records Access  Officer role was created by an update to the 

41:32

state Public Records Law in 2015 to improve  on how records were requested and shared.  

41:40

The records access officers manage all the  requests for records made to their agency, and 

41:47

part of their role is to make sure that the record  requests are answered on time and accurately.  

41:54

Both DDS and DMH have designated Records Access  Officers to handle public record requests, 

42:01

and information how to request the public  records, and medical records as well, 

42:07

from these agencies is available both on the  DDS and the DMH website. Next slide, please.  

42:18

So it's a pretty straightforward process  to request records from different agencies. 

42:28

Anybody who's a member of our public  can ask for records, either in person,   by mail or email, fax if you still do that; and  you don't have to explain why you want them, 

42:38

and you don't have to show identification. The Record Access Officers have ten days to 

42:47

apply to your request and they have  to let you know what the decision is,   and if the request is denied or if they don't  have the records, they'll explain in their 

43:00

reply to you. And you can always appeal. And if you think the agency isn't following 

43:09

the rules, appeals can be made directly to  the Supervisor of Records, and in some cases, 

43:15

members of the public have taken  legal action to get records.   Are there any questions next slide any  questions on the Mass. Public Records Law 

43:25

and related governing bodies? Samuel? >> SAMUEL EDWARDS: Hi. So my understanding, 

43:35

you're outlining some of the records  that are have different laws surrounding 

43:44

them than the Public Records Law outlines. My understanding is that for the criminal records, 

43:53

they are open after the person is deceased, and  my understanding is that for medical records, 

44:01

they're always in perpetuity closed. Just kind of I think I'm correct in 

44:11

saying that? I just kind of wanted  to clarify that difference.   >> JENNIFER FUGLESTAD: Thank you. Okay. Any other...? Next slide, please.  

44:47

I apologize; I think my slides  are a little bit off.  

44:58

Okay. I apologize. DMH and DDS have regulations  regarding privacy and confidentiality of patient 

45:15

records. Under most circumstances, they are  not open for public inspection. There are 

45:23

some exceptions outlined in the DDS and  DMH regulations that govern records.  

45:33

Privacy of records, both DDS and DMH require  that the records are kept private and secure, 

45:39

and they cannot be accessed or  inspected by the public without   a valid reason or specific authorization. The situations where people can see them would 

45:50

be if there was a court order, meaning if  a judge orders it, the patient records can 

45:56

be shared with the right people. A legally authorized representative, 

46:03

so family members, guardians, or someone in charge  of a deceased person's estate can access the 

46:10

records if they are allowed to under the law. Patient or attorney requests, a patient can 

46:17

always ask to see their own records,  and their attorney can as well.   There's also something called the best interest  of the patient. So the Commissioner of an agency 

46:27

can allow access to records if it's good for  the patient and follows privacy rules.  

46:34

And where otherwise required by  law, they have to be shared.  

46:42

There is a 20 year retention period that's  required for medical records under state law, and 

46:49

records cannot be destroyed or transferred to the  State Archives without the prior approval from the 

46:56

Records Conservation Board. Next slide, please. So the DMH and DDS regulations that govern records 

47:07

are available online. The DDS regulation  was last updated in 2009, and the DMH 

47:17

regulation was last updated in 2021. And these regulations establish guidelines 

47:25

for both the maintenance and management of  patient records at state run facilities 

47:31

as well as provider agencies, and the  goal is to ensure thorough, accessible 

47:38

and accountable recordkeeping practices. The regulations also establish the quality 

47:44

standards for recordkeeping, including privacy  and confidentiality. Next slide, please.  

47:53

So people who want to ask for their  own records or their family members 

47:59

or legal representatives asking for somebody  else's records can follow the steps that are 

48:05

posted on the DMH and the DDS Web pages. Records may be delivered, they may be denied 

48:16

entirely, or requesters may receive back  partially redacted, which means blacked out, 

48:24

records if there are legal restrictions when the  records include sensitive personal or medical 

48:31

information regarding another person. And also, DDS has additional I'm sorry; 

48:39

DMH has additional restrictions on their  website. It states that under a court order 

48:47

or valid Personal Representative authorization is  provided, DMH cannot release any medical records, 

48:57

confirm if a person was ever served by  DMH, confirm whether records are still 

49:02

under DMH's custody or control. So that's an additional restriction 

49:09

that's shared on the DMH website. My understanding is DMH keeps medical 

49:17

records for 20 years, and after that, there's no  guarantee the records will still be available, 

49:23

even if there's a court order or permission  from a personal representative. Next slide.  

49:32

Any questions on this section of the report? Okay. Why don't we go on to the next slide.  

49:52

Many records from state institutions  are managed by the Secretary of State,   and one of the key resources that  we've used for accessing these records 

50:02

is the Public Document Series, which is a  collection of government publications that   include both old and new documents. These documents are found online at 

50:12

the state library's digital collection  and we have a little screenshot on the   screen of the digital library. Each public institution and state 

50:22

board in Massachusetts were required to  submit annual reports to the Secretary of 

50:27

State. Public institutions included but  weren't limited to the state hospitals, 

50:36

the various boards of health, charity and lunacy.  There's a section on vital statistics. And many 

50:45

other types of annual reports. The Secretary of State would, 

50:50

in the past, a long time ago, print out these  annual reports and send them out to the General 

50:56

Court, the state library, and other government  offices, in every city and town in Massachusetts, 

51:03

and they were often kept in the local library. These are really interesting reports. They provide 

51:10

a lot of insight into how institutions were  run in the past. Generally they don't provide 

51:17

lists of patients, though that's not  100% the case. Next slide, please.  

51:28

So let's talk a little bit about the Massachusetts  State Archives. The state archives are located in 

51:35

Boston and the archives play a critical role in  preserving and providing access to these important 

51:44

government records. And they include collections  of records from the state hospitals, mental 

51:52

health facilities, almshouses, reform schools,  and a number of other public institutions.  

52:00

The state archives has a collection guide  called the Human Service Collection Guide, 

52:06

which details all the records available from  DDS and DMH and Department of Corrections and 

52:13

DYS. It's a really helpful tool to understand  what the holdings are at the Mass. Archives.  

52:23

And it will list out what's included in  a record collection, but some of them, 

52:33

as you can see here, are restricted, such as  medical records, often registration records for 

52:41

any of the hospitals or schools are restricted. Business records, these are the annual reports, 

52:51

those are available online. Death  records, sometimes institutions 

52:57

maintain their own death records, especially  if the institution had a cemetery on site.  

53:04

Death records may not have always appeared in  local vital records where the community's births, 

53:13

marriages and deaths are typically  maintained, so sometimes they were 

53:18

preserved in the institution's records. The Mass. Archives also has some information 

53:25

about cemeteries and burials. For example, the  MetFern Cemetery registers for the years 1947 

53:32

to '79 are held at the archives,  though access to that document is 

53:38

restricted due to confidentiality laws. The Massachusetts state archives follow a 

53:47

general policy of allowing access to most  records after a waiting period, typically 

53:52

around 75 years. However, it's not explicitly set  in Mass. General Law, unlike in other states. And 

54:02

the record access timeline might vary depending on  the type of record and any associated restrictions 

54:10

with that record. Next slide, please. And this slide contains the listing of 

54:20

the collections held, just a partial  listing of the collections held at   the Mass. State Archives for the institutions  that are under study. Boston State Hospital, 

54:34

a portion; Bridgewater State Hospital, a  portion of those records are available.  

54:40

Danvers State, Fernald, Grafton State Hospital,  Medfield State Hospital, MetFern I'm sorry, 

54:49

Metropolitan State Hospital, Northampton,  Tewksbury State, and Westborough State Hospital; 

54:56

and there's a little bit of a gap there in the  records from Westborough. Next slide, please.  

55:05

Any questions on this section? >> MARY MAHON MCCAULEY: Yes,   this is Mary Mahon McCauley from MOD. I'm curious, because I know often within 

55:18

this group we talk about death records,  and the various like protections on them 

55:26

in different places. And what I'm confused  about is that there's death certificates 

55:35

which I'm assuming is a death record, and I  could go I live in Quincy, and I've done 

55:42

this on many occasions for loved ones and others.  I mean, I can go right to Quincy City Hall with a 

55:48

name and I can pay for a death certificate. And it's not you know, it's not private. I 

55:57

mean, it's in the the public can get it. Is that, as far as a death record, death records, 

56:07

is that more than a death certificate, per se? >> JENNIFER FUGLESTAD: So Samuel, 

56:16

do you have your hand up? >> SAMUEL EDWARDS: Yes. I was   going to clarify. I think what you're referring  to are referred to as vital records. Vital records 

56:26

are the death records that are like created by  both the town and the state. Those are for 

56:32

death records, those are always open. We have  them up to 1930. But if you go to the Vital 

56:40

Records Office, they can print them off for you  from very recently as well. They're always open.  

56:48

There are some internal hospital records that  record deaths that I think are kind of in a 

56:57

gray area because of the fact that the hospital  records are so restricted. So I think that that's 

57:05

what Jennifer is referring to in her slide, is  that internal ones that were kept my the hospital. 

57:12

You're correct that one way to get around those  restrictions could be to search vital records, 

57:19

which are completely public, both at the archive  and at the Vital Records Registry. That would be 

57:24

one way to find out more information about  people who died in the hospitals as well.  

57:31

>> MARY MAHON MCCAULEY: But also, what I'm curious  about is, whether a person died within a hospital 

57:40

at home or wherever the setting was, what I've  found is, if they died in a particular city or 

57:48

town, you just go to the town hall or the city  hall if you need a death certificate, and you 

57:56

get a death certificate. That's pretty public.  And it amazes me, but this is not to be expanded 

58:05

upon here, is that they put the person's Social  Security number on the death certificate.  

58:12

Do you know what I mean? That's you know,  it's very easy access to that one paper, 

58:21

the death certificate, which from what you're  saying, sounds like it would be considered to 

58:27

be one particular type of death record. >> SAMUEL EDWARDS: Correct.   >> MARY MAHON MCCAULEY: But you don't  have to go to like Mass. Archives for 

58:35

it or anywhere else, but just a town  or city hall? All right, thank you.  

58:43

>> JENNIFER FUGLESTAD: Emily. >> EMILY LAUER: I wanted to just expand to 

58:49

answer Mary's question. So the death certificate,  those are largely public, although at times they 

58:56

are redacted for particular legal involvement, but  the vast majority are publicly available. So find 

59:04

that, though, you need to know the person's name  and you need a range of a time, either from their 

59:11

birth date or their death date. And so you need  a little bit more information about the person.  

59:18

But that death certificate does list  where they died and I believe where   they're buried as well and the cause  of death, among other information.  

59:29

There are also death related records held  by human service agencies that may have 

59:35

more information about what happens before  or during the course of someone's process 

59:43

to death. Those would be more protected because  they have more information about the person.  

59:50

And then there are burial records,  which would say, for example, 

59:56

on the grounds of this institution, here are  the names of the people who are buried.  

1:00:02

As we have spoken with certain experts on privacy  laws and other things, my understanding is that 

1:00:10

even though a death certificate might say  where a single person is buried, there is 

1:00:18

more revealing information to say, on the grounds  of this location where people were treated for, 

1:00:26

let's say, a mental health condition, are  the names of the people buried there.  

1:00:32

The inference then that that person may  have had a mental health condition.   And so that information in a burial record  in aggregate kind of gives a different piece 

1:00:43

of information when it's all put together. So I wanted to just clarify those three areas. 

1:00:50

I hope that helps answer the question. >> MARY MAHON MCCAULEY: That is helpful,   because I had wondered about that, knowing  that and I do realize that you need, 

1:01:02

usually a birth date, death, time of death, unless  you're close to it, you don't need the exact time; 

1:01:11

but the other statistical information that I'm  familiar with, the Department of Public Health, 

1:01:17

for instance, does keep track of, which I'm  sure is pretty closely guarded. It's not for 

1:01:26

public consumption, is the suicide there's  the lists of individuals that have committed 

1:01:36

suicide when they're doing the statistics  for the cities, towns, and the state.  

1:01:41

And those, I'm assuming those would be considered  death records that are not something that are 

1:01:51

going to be shared because it's well, I  don't know if they consider that also medical, 

1:01:57

but it also has all the different  names of all the individuals on it.  

1:02:04

>> EMILY LAUER: There are different modes of  death that are recorded in vital statistics, 

1:02:10

suicide being one of them. Homicide  being another. Unintentional injuries, 

1:02:17

natural causes, that sort of thing. You would not be able to go to the Vital   Statistics Office and say, please send me the  list of people who died by this mode of death. 

1:02:29

So you'd have to have some information  about the person, and as long as that is   not a legally restricted record, you may be  able to access that single certificate.  

1:02:41

So there are protections in aggregate, I  believe, that you would have to navigate 

1:02:46

or have a use agreement as to why you would  need that. It would probably be redacted 

1:02:51

information in that direction. >> MARY MAHON MCCAULEY: Okay. Yes,   thank you. That's helpful. >> JENNIFER FUGLESTAD: Samuel?  

1:03:00

>> SAMUEL EDWARDS: I guess a question I have about  the hospital generated death records is like, 

1:03:07

from what I've seen in many cases, they contain  actually less information than the vital records, 

1:03:15

which are public information. A lot of  times the vital records say this person   died at this hospital; this person passed  away at, let's say, Tewksbury State.  

1:03:27

And I guess I have just a question around  the sort of legality and the thought 

1:03:34

process around that. I think that's where  it's a little unclear to me, I guess.  

1:03:46

>> JENNIFER FUGLESTAD: Well oh, Alex? >> ALEX GREEN: That's why we're here! You 

1:03:54

get to the bottom of just that. Because you're so  right; like when I've seen the death certificates, 

1:03:59

they don't just just so you all know,  when someone died at a state institution, 

1:04:05

often the death certificate says that they died  at the state institution, it says the doctor   who treated them, lists their family and home  address, says what they died from, but also lists 

1:04:17

whatever their broader diagnoses were from the  institution as preexisting conditions on a list 

1:04:23

of proximity based diseases to their death. So it will start with the thing that came closest 

1:04:30

to their death. Let's say they died of pneumonia,  they'll say pneumonia. But then let's say they   had heart disease, below that it will say heart  disease. You'll have pneumonia, heart disease. And 

1:04:39

if they had a life long intellectual disability  of some kind or developmental disability, it will 

1:04:45

say something like Down Syndrome after that. So it's vastly more specific, whereas the cemetery 

1:04:53

register they have at the state archives, some  of the stuff, Sam, you're referring to, there 

1:05:00

it often just has, for like the Fernald or state  cemetery, it's often the name, often misspelling 

1:05:07

the name; the burial location; and take death  or burial date, and not much else to it.  

1:05:16

So it doesn't reconcile. It doesn't make  sense. It's not and I think noticing 

1:05:23

and noting and trying to make sense  of those discrepancies is exactly the 

1:05:31

good work that CDDER is digging into. >> SAMUEL EDWARDS: That's exactly what I 

1:05:36

was referring to. Thank you, Alex. You  put it more succinctly than I did.   And yeah, often how people actually find  out about ancestors who were in these state 

1:05:46

hospitals are through the public vital records.  That's kind of what I was referring to.  

1:05:51

>> ALEX GREEN: And the U.S. census, too, right?  Where you can see so much and it will say inmate 

1:06:00

of an institution, and it tells how long they've  been in it, and sometimes depending on the year 

1:06:06

of the census, which institution they were in five  years before that one. And so there's so much more 

1:06:12

information there that's just publicly available,  even on FamilySearch or something like that.  

1:06:23

>> MARY MAHON MCCAULEY: This is Mary  again. It's X number of years before you   can get the U.S. census, right? Like 50 or 75? >> JENNIFER FUGLESTAD: I have to check, Mary. This 

1:06:34

is Jennifer. I believe it's the 1940 census.  It could be the 1950, is available online.  

1:06:44

>> MARY MAHON MCCAULEY:  That sounds right. Okay.  

1:06:50

>> JENNIFER FUGLESTAD: Any other points of  discussion or questions on this section?  

1:07:02

Okay. Next slide, please. Okay. This section talks a bit 

1:07:10

about the records held by DMH and DDS. What we've learned is that records from 

1:07:16

closed institutions are stored in various  locations, some of which are not ideal for 

1:07:22

preserving sensitive documents. Some records are still stored at 

1:07:29

active DMH and DDS facilities and we also  understand that there's some records held 

1:07:35

at area, central offices of each agency. Some records are kept in old buildings on the 

1:07:46

institutional campuses that are still open. And  it's been reported that these storage conditions 

1:07:53

are less than optimal, and lack some important  safeguards like sprinklers and heating/ventilation 

1:08:00

systems to control the climate. These storage conditions are believed to have 

1:08:08

led to some records being in fragile condition.  And the majority of records remain in paper form, 

1:08:16

and that makes them particularly vulnerable  to deterioration, due to the environment.  

1:08:25

Through our interviews, we've also learned  that many people in the different agencies 

1:08:35

understood that records from the closed  institutions were not sent to the Mass. 

1:08:41

Archives because there wasn't enough  space, and that the archives was full, 

1:08:49

and that the records couldn't be transferred.  But we did check with the archives, and 

1:08:55

at one point there may have been a lack of  storage space at the archives, but currently 

1:09:01

there is enough space for records. So that likely solved the problem, 

1:09:10

and the DMH and DDS teams may have been waiting  for this extra space before sending records.  

1:09:17

So at this time, there is space available  at the Mass. Archives. Next slide, please.  

1:09:26

So we did talk a bit about the regulations and  rules from DDS and DMH on protecting patient 

1:09:34

records. There are some concerns about where the  records are kept. We know that in a few places, 

1:09:43

there isn't good security where  those records are stored.  

1:09:50

And some examples of the concerns we found over  the past year or so, for example, in the response 

1:09:59

from our letter of inquiry, it was stated  that the records at Medfield State Hospital, 

1:10:05

there could be some stored in the buildings  on the campus, but currently the buildings   are unsafe to enter. So we've asked for a time  frame when the buildings will be evaluated.  

1:10:19

Remember, at Fernald, the records containing  personal information, like names, birthdays, 

1:10:26

Social Security numbers maybe not  Social Security numbers were found   in old buildings on the campus. And DDS has taken a to retrieve 

1:10:36

those records that were found and  transferred them to secure settings.  

1:10:44

In 2024, at Wrentham Developmental Center,  someone broke into a closed building on the 

1:10:53

campus and was able to access old records from  another state school that were stored there, 

1:10:59

so the leadership at the center has taken extra  security measures. But challenges remain with 

1:11:07

that particular campus. There's issues with  people coming off and on the campus, as far as 

1:11:16

unauthorized entry into these sensitive areas. And then there was coverage in 2014 of a 

1:11:27

teenager finding records at the  site of the Dever State School, 

1:11:34

and they were from the 1960s that had been left  unsecured in an old building on the campus.  

1:11:40

And then there's been similar discoveries  made at other closed state hospitals found 

1:11:49

by people exploring these abandoned buildings. And finally, in Foxborough State Hospital in 2000, 

1:11:59

there was a news coverage regarding the missing  records from Foxborough State. There are not 

1:12:07

records at the state archives from Foxborough  state Hospital. There are some records stored 

1:12:13

at Taunton State Hospital so it's unclear how  many records are missing next slide, please.  

1:12:26

Any questions on this section? Matt, looking  at the time, I'm not sure how far into the 

1:12:40

presentation the break slide is but I don't know  if you wanted to offer the break now, considering 

1:12:47

how long we've gone into the meeting? >> MATT MILLETT: This is Matt. Yeah,   we can take a five minute break right now. We'll take a five minute break and we'll be 

1:12:58

back in five minutes. Thank you. >> JENNIFER FUGLESTAD: Thank you.  

1:14:18

(Break) >> MATT MILLETT: 

1:18:33

Hello; this is Matt again. Our five minute  break is up, so I'd like Jennifer to continue 

1:18:40

with the presentation. Thank you. >> JENNIFER FUGLESTAD: Thank you, Matt.  

1:18:46

I did want to mention, I was just looking at  the presentation. I'd like to propose that in 

1:18:54

the interest of time, that I give a very brief  overview of the private record collections. It's 

1:19:03

about seven slides and I think it might make  sense so we can get through the slide deck.  

1:19:10

But the should I wait a minute,  Matt, or go ahead and get started?  

1:19:22

>> MATT MILLETT: This is Matt. I agree you  can quickly go over that. I think the personal 

1:19:30

experiences are more important than that. >> JENNIFER FUGLESTAD: Thank you, Matt.  

1:19:39

Can you go forward sorry yep. So we were just chatting, in the interest of time, 

1:19:47

we're going to not really cover the private  record collections. It's about seven slides, 

1:19:54

but there are a number of private collections  held by different universities, primarily, 

1:20:02

but we also have the Friends Association has some  records as well for Belchertown State School.  

1:20:12

They're well documented within  the draft report as well as in   the slides for today's presentation. All these private record collections do 

1:20:23

have different restrictions on access, in terms  of what's restricted, what's not, and how soon 

1:20:33

after creation the record can be shared. So I just wanted to mention that we're going 

1:20:39

to fast forward through that section and move  on to personal experiences of people who have 

1:20:45

attempted to access records. So the team at CDDER collected 

1:20:55

information through key informant interviews,  and these were with family members of former 

1:21:00

residents of state institutions who had actually  been in the middle of trying to access the 

1:21:10

records of their deceased family member. We also had to use a couple of books as a 

1:21:17

resource. Two local authors documented  their experiences accessing records from 

1:21:25

the different institutions when they  were researching their family history.   They provide a personal account of their  experience, and really talked through the 

1:21:36

deep emotional and practical challenges that  they experienced trying to find to get ahold 

1:21:44

of those records and to really understand what  their loved ones went through while they were   institutionalized. Next slide, please. So some of the themes that came out of 

1:21:58

the interviews included barriers to accessing  records. So there are a number of legal barriers 

1:22:09

that can get in the way of people being able  to access these records. There is a need for 

1:22:18

court orders from the Probate Court, different  types of specific permissions that are required, 

1:22:25

in order to access records. The family members struggled with 

1:22:32

access to records because of the complex legal  requirements. And honestly, in some cases, 

1:22:40

it was bureaucratic inefficiencies  that contributed to these barriers.  

1:22:45

An example would be Mr. Scott, who  was in the news this past spring, 

1:22:54

after he met with Governor Healey. Mr. Scott  shared that he had to hire an attorney and 

1:23:03

actually faced multiple denials on his requests to  access his brother John's records from Fernald.  

1:23:13

Another key informant, Ms. Turner,  experienced a similar kind of costly 

1:23:20

process, trying to obtain her grandfather and  great grandmother's records from Fernald.  

1:23:28

And another key informant, Laura Zigman, when  she did finally receive her sister's records 

1:23:34

they were heavily redacted or blacked out. And another person who we interviewed who 

1:23:42

has chosen to remain anonymous, he was  unable to access records about his cousin 

1:23:50

who lived at Fernald, due to really  the refusal of his extended family to 

1:23:55

grant consent. So there's some complications  with family dynamics in these situations.  

1:24:03

So that prevented him from getting  the necessary permissions needed to   access the records of his cousin. And similarly, the author of the book 

1:24:12

Finding Emmy had to go through a lengthy  and complicated process to obtain her 

1:24:18

great uncle's records, which included  getting consent from all of her existing 

1:24:24

relatives, including her mother, who was not in  favor of opening up her great uncle's records.  

1:24:33

Another area where or a common theme was  problems with recordkeeping. Some of the families 

1:24:41

we interviewed found that the records were poorly  maintained and some had been destroyed over time. 

1:24:48

In other cases, records had been transferred  to other institutions or archived on microfilm. 

1:24:56

And some families were unsure whether  records even still existed.  

1:25:01

So, for example, in Finding Emma, the case  of the great uncle, his hospitalization 

1:25:12

records were kept on microfilm after his stay at  both Westborough State and Metropolitan State, 

1:25:20

and so it kind of shows, gives you an example of  how records are often scattered, inaccessible, 

1:25:28

and sometimes at risk of being destroyed. A lot of times, in talking with these families, 

1:25:35

we found that the searches were not just  about finding information, but what they   were really trying to do was understand  family members who had been separated 

1:25:44

from them because of their disabilities. For example, Mr. Scott wanted to find why 

1:25:51

his brother was sent to Fernald in the  first place and what happened to him.  

1:25:56

Laura Zigman was searching for her sister's  records to really find closure after many, 

1:26:02

many years of sadness in her family from  the death of her sister at a young age.  

1:26:09

These key informants all really wanted to  understand their family history, and really 

1:26:17

understand what their family members had gone  through. So, for example, the author, Amy McGiggen 

1:26:26

[ph] uncovered the truth about her grandfather's  past and found a great uncle she didn't know she 

1:26:32

had who had lived at Northampton State Hospital  for decades, probably 35 years. Next slide.  

1:26:44

Another kind of common theme that we found was the  key informants called for more transparency and 

1:26:52

accountability in the records access process. Laura Zigman specifically criticized the system 

1:26:59

and from her perception that it prioritized staff  privacy over that of the former residents.  

1:27:07

And other key informants advocated  for the creation of funds to help   families navigate the probate process. And others called for public acknowledgment 

1:27:19

of the history of the institutions, like  Fernald and a public apology for the   mishandling of records. Next slide, please. Any questions or feedback on this section?  

1:27:39

>> MATT MILLETT: Jennifer, this  is Matt. A question I have is,   can you go back a slide for me, please? So the creation of funds, did they 

1:27:49

say who will oversee that fund? >> JENNIFER FUGLESTAD: No; it was more about the 

1:27:56

probate process and at times it makes it easier  if you hire an attorney is quite expensive and 

1:28:04

complicated, and some families may not financially  be able to pay for those fees or whatever you have 

1:28:15

to do in order to go through probate. So, for some families, it's a barrier if   it's financially outside of  what they can afford to do.  

1:28:26

>> MATT MILLETT: Thank you, this is Matt.  I figured you would say a lot of families 

1:28:31

can't afford it. So I wondered if they  had suggested who would oversee it.   >> JENNIFER FUGLESTAD: No, just that it  would have been helpful for Ms. Turner, 

1:28:40

going through the process to become the  authorized representative for two people, 

1:28:47

whose records were well over 100 years old,  she said it was cost prohibitive for her.  

1:29:00

Any other questions? Okay. Let's move on to kind of what we're working 

1:29:10

on as far as our additional areas for research. So we're continuing the evolution of governing 

1:29:17

bodies of state institutions, all  the way up through to today.   And we're looking at the Statewide  Record Retention Requirements and 

1:29:27

how those have changed over time. We are going to be talking more about 

1:29:33

how we can collect some information from the DDS  and DMH facilities and offices about the records 

1:29:39

stored at those locations, and try to come up  with a summary of records destroyed over time.  

1:29:48

We are currently researching all the  different types of state institution   records that are available online, for  example, registration for different 

1:29:58

hospitals are available on FamilySearch, the  U.S. census records; those are some examples.  

1:30:06

And we're digging into research or access to  records, which is really separate from family 

1:30:13

members accessing records. And we are hoping  to get our analysis from the legal students at 

1:30:22

Harvard who are looking at comparative standards  from other states as far as records access, 

1:30:28

and also HIPAA and how it relates to death  records or cemetery records. Next slide, please.  

1:30:42

Okay. Now, we'll wrap up our summary of the report  with the framework for remembrance. Next slide.  

1:30:53

So we covered over the past year, we've done  some presentations with a number of organizations 

1:31:00

that have created memorials or different types of  framework for memorials. They include Belchertown 

1:31:07

State School Friends Association, the Danvers  State Memorial Committee, the California Memorial 

1:31:14

Project, and the Willowbrook Mile. And we'll  talk a little bit about some of the key themes 

1:31:20

and lessons learned and briefly touch on areas  for additional research. Next slide, please.  

1:31:29

So the Belchertown State School Friends  Association, which Kate Benson is very 

1:31:37

involved in is working to create a memorial  and museum at the former Belchertown State 

1:31:43

School. The memorial will share the history  of special education, institutional care and 

1:31:51

disability rights. The group also wants to save  the school's main building and create sorry, 

1:31:58

administration building and create a space  for learning and reflection. They are working 

1:32:04

with the Belchertown Historic Commission  and the Belchertown Cultural Alliance on   projects like a walking trail, museum, and  other improvements to the campus. And the 

1:32:15

memorial will teach people about the school's  history and honor those who lived there.  

1:32:26

In 2019 sorry. The school, which was founded  in 1922, was intended to care for children with 

1:32:34

developmental disabilities, and that actually led  to lawsuits and its closure in 1992. And that was 

1:32:46

called the Ricci agreement. It's a consent decree.  And there are plans to redevelop the campus.  

1:32:59

In 2006, there was a plan to develop it into  a resort, and it has remained vacant because 

1:33:05

that plan did not go through. It's been vacant until buildings 

1:33:12

were starting to be demolished in  2015 for a senior living campus.  

1:33:17

In 2019, the Belchertown State School Friends  Association was revived to preserve the school's 

1:33:23

legacy and to document the history of  the state schools. They are going to 

1:33:29

repurpose the administration building to house the  artifacts, and will also include historic images 

1:33:36

of Belchertown and other state institutions. And the Friends Association relies on community 

1:33:43

partnerships, fundraising and donations  for support, and some key lessons that   they learned include the importance  of collaboration, careful planning 

1:33:52

for artifact storage, and securing funding  from government grants, private foundations, 

1:33:58

and corporate donations. Next slide. The next group that the workgroup met with 

1:34:09

was the Danvers State Memorial Committee; that  was with Pat Deegan. As a brief summary, this 

1:34:18

Memorial Committee worked to restore and honor  the cemeteries at Danvers State Hospital. The 

1:34:23

group was made up of former patients and community  members, and they worked to replace the simple 

1:34:29

markers with headstones that had the names of  people who died there, showing respect for them.  

1:34:35

The group also worked to make sure that when  the land that the institution was on was sold, 

1:34:42

that money would be used to create housing  for people with mental health needs.  

1:34:47

They were also successful in having perpetual  care of the cemetery included in the sale of 

1:34:52

the property. So those cemeteries will always  be maintained by the owner of that property.  

1:35:01

And really, the larger goal of the committee was  to honor the past and make the future better for 

1:35:08

people who need support. Next slide, please. The workgroup also met with folks from the 

1:35:19

California Memorial Project. The California  Memorial Project was created to remember former 

1:35:25

patients of state hospitals and care centers in  California. It was started in 2002 through a law 

1:35:35

called Senate Bill 1448. The memorial project has  been working on fixing up the cemeteries across 

1:35:46

California, and they also hold yearly remembrance  events at the different state hospitals.  

1:35:53

The project is led by peer advocates, and they  are working to honor those who passed away in 

1:35:59

these institutions, and also give voice  to the people who still live there.  

1:36:05

Their remembrance events help people  reflect on the history of the institutions 

1:36:10

and are held sorry; it's held on the  third Monday of September each year.  

1:36:25

The 20th annual remembrance day, which  was held virtually due to COVID 19, 

1:36:31

actually allowed a broader participation  across the State of California, and they 

1:36:38

have more of their remembrance ceremonies posted  on their website. They are also collecting oral 

1:36:51

histories of former patients of institutions,  and those are being posted on their website 

1:36:59

as well. Next slide, please. And then the last group that 

1:37:07

we included in this draft report was  the Willowbrook Mile Walking Trail.  

1:37:14

The Willowbrook Mile Walking Trail is a  place to remember the Willowbrook State 

1:37:20

School in Staten Island, New York. It is a  walking trail that has 12 stops that tell 

1:37:27

the history of the school and the challenges  that the people who lived there faced.  

1:37:33

It's designed with accessibility in mind so  that everybody, no matter their abilities, 

1:37:40

can learn about what happened at  Willowbrook and the history there;   and it aims to preserve the site's history but  also honors current efforts for social justice.  

1:37:52

The project focused on being creative, sustainable  and inclusive, reflecting values of progress and 

1:37:58

fairness. Next slide, please. Is there any questions on 

1:38:04

the Framework For Remembrance? Okay. Let's move on to the last couple slides.  

1:38:19

There are some key themes that were learned  in terms of the lessons from these groups.  

1:38:30

One is collaboration with stakeholders. Each  project emphasized that it was really important 

1:38:37

to work with various stakeholders, whether  they are former residents, their families, 

1:38:44

advocates or allies, including people from  different government agencies and community 

1:38:49

organizations, in order to have the design of the  memorial be welcoming and engaging for people with 

1:38:58

a wide range of needs and interests. Focus on education and reflection: 

1:39:07

Each group wanted to make sure there were  educational opportunities to teach people 

1:39:15

about the history of the institution, and also  the social justice issues that surround disability 

1:39:20

rights. So looking for opportunities through  museums and trails, interpretive materials, 

1:39:30

can help the visitors learn more about  the institution and what it was about.  

1:39:35

And then finally, community engagement  and advocacy: Several of the memorials, 

1:39:41

such as the California Memorial Project is  really not only about remembering the past, 

1:39:48

but continuing to advocate for systemic change  and improved care for people with disabilities 

1:39:55

that currently live in institutions. So advocacy is a core component of 

1:40:02

the California Memorial Project. The Framework For Remembrance working group 

1:40:09

was able to really get some insights into how  different approaches to memorialization can ensure 

1:40:17

that different institutions are not forgotten,  and that the people who lived and died there, that 

1:40:24

their dignity is restored. Next slide, please. There were also some important lessons about 

1:40:33

organizing that we learned.  Knowing your stakeholders,   not just including them but knowing them, they  needed to include input from former residents, 

1:40:43

from their families, so that the memorial  reflected a broad spectrum of perspectives.  

1:40:51

They wanted to create a shared vision, so that  diverse stakeholders can come together and 

1:41:00

emphasize inclusivity and community engagement. Taking time to plan: The project's long durations 

1:41:09

required careful planning. Sometimes it  included managing real estate transactions 

1:41:15

or securing funding and ensuring the design  that reflected the memorial's values.  

1:41:22

So it was important for the groups to  be flexible. That was really essential,   as sometimes unexpected challenges would come  up, and they would have to adjust their plans.  

1:41:34

Another lesson that was shared with us is  safeguarding our message. So the projects, 

1:41:41

they had to stay true to their original mission  and history despite some external pressure that 

1:41:47

might have diverted the focus, or the purpose or  the focus; making sure that you're safeguarding 

1:41:56

or protecting the integrity of what the  memorial was meant to be is crucial.  

1:42:02

And being ready for a long ride. For example,  the Willowbrook project took over 17 years to 

1:42:08

complete. So it's important to have patience  and perseverance and manage expectations 

1:42:16

throughout the process. Next slide, please.  

1:42:25

And another important area that we learned  more about from these different groups is   really engaging and supporting people with lived  experiences. So these projects taught us some 

1:42:39

important ways to support and honor people with  mental health and developmental disabilities, 

1:42:45

and there are some things that can be done  that can be inclusive for everybody.  

1:42:52

Using agendas, organizing meetings with  help people stay on track, so that will 

1:42:58

help members stay prepared and valued. Focusing on a respectful atmosphere, 

1:43:05

where everybody feels heard and respected,  even if they have different opinions.  

1:43:11

Leveling the playing field: Encouraging open  communication by treating everyone equally, 

1:43:17

so that people feel comfortable  sharing their ideas.   And recognizing diverse leadership styles. So  understanding that not all leaders are the same, 

1:43:28

that some lead by listening or organizing. So you  want to appreciate all kinds of leadership.  

1:43:36

And then finally, cultivating leadership skills,  giving members the chance to practice leadership, 

1:43:44

like public speaking, so everyone can  start to develop more confidence.  

1:43:50

Engaging the general membership, so keeping  members involved by having regular events, 

1:43:56

encouraging people to share their thoughts  and ideas and memories of the institution.  

1:44:02

And then inviting participation in public  forums. So encouraging members to attend 

1:44:08

public meetings where they can share their  views and to help shape decisions.  

1:44:15

So that was some of the lessons that we learned  about honoring past struggles but creating a 

1:44:21

more inclusive and fair project. And that concludes the summary of the 

1:44:29

report oh; I apologize. We are working on writing up 

1:44:37

a summary of our talk that Alex gave  on the MetFern Cemetery restoration, 

1:44:44

and we are collecting information about the  various annual memorial ceremonies at the DDS 

1:44:53

cemeteries, as well as hoping to talk with  folks from the Westborough Cemetery Project, 

1:45:00

which is working on memorials for  Westborough State Hospital.  

1:45:06

And that concludes the summary  of the report. Any questions?  

1:45:14

>> MARY MAHON MCCAULEY: This is Mary. I just want  to congratulate you on all just a wonderful   

1:45:23

all the information and everything you've done to  do the research, to get to all of those talking 

1:45:31

points. I really appreciate it. It was really  helpful for a variety of reasons. You know, 

1:45:38

in thinking of the remembrance, it's interesting  because some the list of the different ways 

1:45:46

that they remembered the individuals that lived  and possibly died within their institutions are 

1:45:52

beautiful, but the critical pieces of  there's a lot of slow cogs in the 

1:45:58

bureaucratic process and it takes so long to  do. It was a great body of group. Thank you.  

1:46:07

>> JENNIFER FUGLESTAD: Thank  you, Mary, I appreciate that.   Lauri, I see you have your hand up. >> LAURI MEDEIROS: Yes. So, ditto to what 

1:46:17

Mary just said. Excellence beyond excellence. It's  a privilege to be in a room where such a report 

1:46:26

is generated and so thoroughly researched. And like Mary, I thought it was unbelievably 

1:46:33

incredible what groups had done and one of  the mentions was with the cultural council.  

1:46:39

And I just put in the link about the Mass.  Cultural Council. It initially started out as 

1:46:47

funding from the bottle returns. You know,  you get the 5 cents back on every bottle? 

1:46:53

That was initially how the Cultural Council  kind of funded itself. And it's now up to it 

1:46:58

actually is a legislative appropriation of a  year, they're asking this year for $28 million.  

1:47:04

And I thought that was an ingenious idea,  because one of their quotes is, addressing 

1:47:12

systemic inequities across the sector. And I thought, isn't this just that? A cultural 

1:47:18

inequity. You know what I mean? So I thought that was genius,   I had never heard of it, I didn't even know  about it. So I'm psyched to have learned that 

1:47:29

information, and that was brilliant of them. >> JENNIFER FUGLESTAD: Some very creative people, 

1:47:36

for sure, working on these different projects. Okay. Well, Matt, I will turn this back over to 

1:47:47

you. Thank you. >> MATT MILLETT:   This is Matt. Thank you, Jennifer and CDDER for  that report and followup, like everyone said.  

1:47:57

So, next steps: CDDER will be sending an email out  about dates for the next meetings and time frames, 

1:48:04

so if everybody could reply back quickly so  we can get the dates on the calendars.  

1:48:17

Any questions or comments to talk about? >> MARY MAHON MCCAULEY: I have an announcement, 

1:48:24

if I may. Not everyone knows here, but again,  this is Mary Mahon McCauley from Mass. Office 

1:48:31

on Disability. And I am retiring from the  Commonwealth. It is bittersweet news for me, 

1:48:39

and as I share it, of course I'm happy about  my 35 plus years with the Commonwealth, 

1:48:45

and I've loved all of it. And it will come  to an end as far as working in a professional 

1:48:53

capacity for the State on February 28th. So I wanted to let everyone here know that. 

1:48:59

I'll be in any meetings that happen prior  to that. And I'll be really staying, 

1:49:05

trying to stay tuned with everything  that's happening with this Commission   beyond that. I just wanted to announce it. >> MATT MILLETT: Thank you. Congratulations. 

1:49:12

As you say, it's a bittersweet moment. >> MARY MAHON MCCAULEY: Thank you, Matt.   >> MATT MILLETT: Any questions or comments? If not any followup on Mary retiring?  

1:49:26

>> ALEX GREEN: Thank you, Mary, for  everything. You've been so amazing in 

1:49:31

all of this and such a great colleague to work  with. It is bittersweet. Congratulations!  

1:49:39

Don't go! >> MARY MAHON MCCAULEY: I'll still be around.   >> ALEX GREEN: Please, please. >> MATT MILLETT: Lauri, 

1:49:47

you have your hand raised? >> LAURI MEDEIROS: I don't know if we missed   it. But at some point earlier on in the meeting,  I think it was you, Matt, that was mentioning, 

1:49:57

we're anything about how to set dates after  January 1st or something? Did we get to that 

1:50:03

or something that's going to be done over email. >> MATT MILLETT: Email, we decided to do it over   email. We'll send out an email, maybe  not tomorrow but early next week and try 

1:50:12

to do it before the holiday season. If not,  we won't get to it until after the new year. 

1:50:17

If that is possible, that would be great. >> LAURI MEDEIROS: I just didn't want to 

1:50:23

have missed that; that's all. And speaking of, Matt,   Happy Holidays, everyone! >> MARY MAHON MCCAULEY: Happy holidays!  

1:50:33

>> MATT MILLETT: So, if there are  no other questions or comments,   a motion to vote to adjourn? Do we have  a motion to adjourn the meeting?  

1:50:42

>> MARY MAHON MCCAULEY: Motion to adjourn. >> MATT MILLETT: So we have a effect?   >> ANNE FRACHT: Second. >> MATT MILLETT: We'll do the roll call now.  

1:50:53

>> KATIE GULLOTTI: Yes. This is  Katie from CDDER. Once again I'll   read out your names in alphabetical order.  If you could please response with yes, no, 

1:51:02

or abstain, it would be appreciated. Elisa Aronne? I think she left.  

1:51:12

>> MATT MILLETT: Elisa and  Brenda had to step out.   >> KATIE GULLOTTI: Kate Benson  is out. Sister Linda Bessom?  

1:51:23

Reggie Clark? >> JENNIFER FUGLESTAD: He   had to leave for another meeting. >> KATIE GULLOTTI: Okay. James Cooney?  

1:51:32

>> Yes. >> Samuel Edwards.   >> Yes. >> Thank you. Anne Fracht.  

1:51:41

>> Yes. >> Thank you. Alex Green.   >> Yes. >> Bill Henning?  

1:51:51

Andrew Levrault? >> Yes.   >> Mary Mahon McCauley. >> Yes.  

1:51:58

>> Evelyn Mateo? Lauri Mederios? >> Yes.  

1:52:05

>> Matt Millett. >> Yes.   >> Vesper Moore. >> Yes.  

1:52:12

>> And Brenda Rankin? Did I miss anyone? >> MATT MILLETT: This is Matt. Thank you, 

1:52:24

everyone, have a happy holiday and  I'll see you after the new year.   >> Happy holidays, everyone. >> Bye for now.  

1:52:30

>> Thank you, again, Jennifer,  for all your hard work.  

1:52:39

>> JENNIFER FUGLESTAD: You're welcome.  Thanks, Lauri. Have a good holiday.   >> LAURI MEDEIROS: You too. [End]