(Recording in progress.) >> Kate: All right we would like
0:06
to call this institution on special institutions to order. My name is Kate Benson and I'm one of
0:12
the commissions two cochairs. As usual before we begin, we'd like to let everyone know that
0:19
this meeting must follow the open meeting law. Any votes will be done via a roll call vote.
0:28
We ask that commission members please mute themselves when not speaking and use the raise
0:33
hand feature if they would like to speak. Before speaking, please state your name so everyone
0:39
knows who is talking. Any questions posted from the audience in the Q and A for this meeting,
0:45
CDDER will be reviewing the questions and holding them until the end of the meeting. Today’s meeting
0:51
is scheduled for two hours. We will have a break midway through the meeting, at about 4 o'clock. To
0:57
make sure everyone can participate we ask the following. We have CART services supporting
1:03
our meeting today. These are captions that help people follow the discussion. If you need help
1:08
turning on these captions, please let us know. We ask that people speak at a non rushed pace
1:15
and provide yourself with a brief pause for the CART transcriber to write what you have said.
1:20
We ask that you speak with as few acronyms as possible. Doing so will help all participants
1:26
to understand essential information that is shared here. We will try to remind folks of
1:32
these items just mentioned, if needed during the meeting, and to keep us on track. When
1:37
we end this meeting, we will have notes made available based on what we talk about today.
1:42
This meeting is also recorded and the videos on the commission’s mass.gov page and on YouTube.
1:50
Next slide, please. Ok.
1:57
We hope everyone has taken a moment to view the agenda. These are the items we will be discussing
2:02
today. We have some announcements. CDDER will provide a recap of the last meeting. After we vote
2:09
to approve last month’s meeting minutes, we will have another discussion of the vice chair role.
2:15
We also will discuss the schedule for upcoming meetings. The bulk of the meeting will be a
2:20
discussion about what we want to recommend for the framework for remembrance. Then we will discuss any next steps and then wrap up the meeting with a vote to adjourn.
2:30
Next slide, please. We wanted to welcome Camille,
2:39
and I am going to apologize for the pronunciation of Camille’s last name, Karabaich, who is the new
2:46
representative from the Mass Office on Disability. Welcome, Camille, and I don't know if Camille is
2:53
with us today. Is she Jen? >> Jen: I don't see her name.
2:59
>> Kate: Okay. I don't either. So next time that Camille joins us,
3:04
we will have her introduce herself. We also wanted to announce that Matt Millett has decided to step
3:11
down from the special commission due to personal reasons. We want to thank Matt for chairing this
3:16
commission over the last two years. I’d like to ask Victor Hernandez from the DDS to give us an update on the DDS commissioner's appointment of a new designee for this role.
3:27
Victor? >> Victor: Yes. Thank you and thank you for allowing me to speak. We are very pleased DDS to hear that our very own Anne Fracht
3:40
has expressed an interest in being the co-chair, representing DDS. I spoke with the commissioner
3:49
about this and she herself too is very excited. We all know have known Anne for many years, for her
3:59
advocacy and for her commitment to folks served by the department, and value her thoughts and
4:11
her willingness to always speak up for the right thing. That's from different committees
4:19
she's been on. Most recently with the self determination advisory board. She's always
4:25
spot on as Anne is on her comments and always her willingness to share them with folks. So
4:35
DDS is thrilled and excited and pleased to have Anne representing us on this committee.
4:43
>> Kate: All right. Thank you so much, Victor. And thank you, Anne, I'm very excited that you're stepping into this role. We would now like to invite Emily from
4:52
CDDER to provide a high-level recap of our last meeting before we vote to approve the minutes.
4:57
Emily? >> Emily: Thank you, Kate. So the last meeting, the commission members reviewed the purpose of the this special
5:06
commission. They specifically reviewed the purpose of a summary report that will be made
5:14
and who it is for. They talked about the types of things that can be said in a summary report.
5:21
They discussed how the report will be created, and they talked about details like the writing style
5:27
of the report, the use of plain language, and how they would talk about people with disabilities.
5:35
They spent the rest of the meeting talking about different areas of focus and potential recommendations that the committee could make in their summary
5:45
report. Back to you, Kate. Thank you. >> Kate: Thank you, Emily. Before we dive
5:52
into this afternoon's discussion, we have our vote on the minutes from the commission's last meeting in February. Draft copies of the meeting minutes were e-mailed earlier this week. Do any
6:03
members have any suggested changes to the minutes? Any suggestions on last month's minutes? Okay.
6:14
If not we can proceed with the vote. As usual we will conduct a roll call vote.
6:20
But before CDDER reads out everyone’s names do we have a motion to approve the minutes from the last meeting? Please remember to state your name before speaking.
6:30
Do we have a motion to approve the minutes? >> Alex: This is Alex I make a motion to approve the minutes. >> Kate: Thank you, Alex, do we have a
6:38
second? I see Bill's hand up. Bill is seconding the acceptance and approval of last month's
6:47
minutes. And we will now take a roll call vote. >> Jen: Thanks, Kate, this is Jen Fuglestad from
6:56
CDDER and I will now read out each member’s name in alphabetical order,
7:02
by your last name. When your name is called, please respond with yes, no, present, or abstain.
7:13
Start with Elise Aronne? >> Elise: Present.
7:22
>> didn't happen. >> Jen: Kate Benson. >> Kate: Yes. >> Jen: Sister Linda Bessom?
7:29
>> Jen: Reggie Clarke? >> Jen: Reggie Clarke? Do
7:39
you approve the minutes? >> Jen: James Cooney?
7:49
>> James: Yes. >>Jen: Samuel Edwards? >> Samuel: Yes. >> Jen: Anne Fracht? >> Anne: Yes. >> Jen: Alex Green?
8:02
>> Alex: Yes. >> Jen: Bill Henning. >> Bill: Yes. >> Jen: Camille Karabaich?
8:11
>> Jen: Andrew Levrault? >> Jen: Evelyn Mateo?
8:21
>> Jen: Lauri Medeiros? >> Jen: Vesper Moore?
8:29
>> Vesper: Yes. >> Jen: And Brenda Rankin? >> Brenda: () >> Elise: Are you voting yes or no.
8:37
>> Brenda: Yeah. >> Jen: Thank you, Brenda. Did I miss anyone?
8:47
>> Kate: Thank you, everyone. The minutes are approved. As a reminder, copies of the
8:54
approved minutes, and all the materials from our commission meetings are available on the
9:00
commission's Web site. Next slide, please.
9:09
At the November meeting, the special commission voted to approve the role of vice chair. The
9:15
vice-chair role is still vacant and at this time the commission is in need of that role
9:21
being filled. The vice chair would be a helpful role as the vice-chair could step in, if I,
9:26
or Anne, or both of us were not available. The vice chair could also help by working with the
9:32
co-chairs regularly and reaching out to members before meetings to make sure everyone attends.
9:38
I wanted to open this up for discussion. Are there any members of the special commission who would like to step into this leadership role? >> Alex: This is Alex. How many months have we got
9:56
on our sort of formal mandate left? >> Kate: Just under three months.
10:06
>> Alex: Okay. >> Kate: I believe. >> Alex: So somewhere between 3 and 5 meetings. >> Kate: Correct if my math is correct,
10:14
which it may not be. Is there anyone who is interested in this position?
10:22
>> Alex: Since it's short term, I would consider it if it would help just on the
10:30
end with you and Anne. I don't know what that does in terms of a secretary role,
10:37
but if it helps in case we're just short on quorum or folks are traveling, or anything
10:44
else going on, I'd do it for a few months. >> Kate: Thank you, Alex. Is there anyone else
10:51
interested in this role? And it is relatively short term, but it would help immensely as there
11:02
will be a couple of, well at least one date where Anne and I may not be available. Okay. That leaves
11:10
Alex. Do we have a motion to install Alex as vice chair? I see Bill's hand. Bill is making a motion
11:24
for Alex to be installed as vice chair. >> Bill: Sure. >> Kate: Do we have a second? >> Reggie: I second.
11:35
>> Kate: Thank you, Reggie. Alright, we will take a roll call vote to make it official.
11:42
>> Jen: Okay. Everybody, thank you. This is Jennifer from CDDER and I will now read out
11:48
your names by alphabetical order. When your name is called, please respond with yes, no,
11:56
present, or abstain. >> Jen: Elise Aronne?
12:04
>> Jen: Kate Benson? >> Kate: Yes. >> Jen: Sister Linda Benson? >> Jen: Reggie Clarke?
12:15
>> Reggie: Yes. >> Jen: Thank you, Reggie. >> Jen: James Cooney? >> James: Yes.
12:22
>> Jen: Samuel Edwards? >> Samuel: Yes. >> Jen: Anne Fracht? Anne, Anne Fracht? >> Anne: Yes, yes.
12:37
>> Jen: Alex Green? >> Alex: I'll abstain on it. (Laughter.) >> Jen: Bill Henning?
12:43
>> Bill: As long as Kate Benson isn't intimidated by the vice chair, I approve.
12:52
(Laughter.) >> Kate: Not even close. >> Alex: It's the other way, it's the other way. >> Bill: I assumed.
13:02
(Laughter.) >> Jen: Camille Karabaich? >> Jen: Andrew Levrault? >> Jen: Evelyn Mateo?
13:14
>> Jen: Lauri Medeiros? >> Jen: Vesper Moore?
13:20
>> Vesper: Yes. >> Jen: Thank you. >> Jen: And Brenda Rankin? >> Brenda: ()
13:27
>> Elise: Yes to vote or not to vote. >> Brenda: Yes. >> Jen: Thank you, Brenda. And it looks like that motion was approved.
13:41
>> Kate: All right. Next slide, please. You're stuck now Alex.
13:50
(Laughter.) >> Okay. The first item that we wanted to discuss is the open meeting law. The temporary rules to allow virtual meetings that
13:58
was put in place during COVID ends on March 31st of 2025 which is coming up quick. We don't know
14:07
at this time if those rules will be extended or if there will be new allowances for virtual or hybrid
14:14
meetings after March 31st. We wanted to let you know now as we may need to adjust our plans for
14:21
the next meeting depending on what the decision is. The next item we want to discuss is the April
14:28
10th meeting. We know some commission members have scheduling conflicts and won't be able to attend.
14:34
We need to have nine members to make quorum or the meeting will need to be rescheduled. Can
14:40
I get a sense on any commissioners that will not be present on the 10th? I am one of them.
14:46
Is there anyone else who cannot be present on April 10th? Anne were you one of those
14:53
individuals that couldn't do April 10th? >> Anne: I changed plans. I'll be here.
15:01
>> Kate: Okay. Perfect. All right. So it's just me throwing a wrench in the works. Okay. So do
15:13
the question now is do we want to identify the new date for the meeting, or do we want to still hold
15:21
the meeting with Anne and Alex? Alex, go ahead. >> Alex: This is Alex. On the temporary
15:35
rules thing. >> Kate: Mm hmm. >> Alex: So forgive me if I'm being dense, does this mean that after the 31st right now, we’d have
15:46
to meet in person instead of meeting online unless someone changes those rules or what's the yeah,
15:54
what's the sort of landscape there? >> Kate: Emily? >> Emily: Thank you. Yes, that's correct Alex, the ability to meet online for open meetings is
16:05
granted under that special permission which was time limited. My understanding is that
16:11
there are discussions happening about potentially extending that rule, but we have not seen approval
16:18
coming forward. And this will not only affect your commission but any commission in Massachusetts.
16:23
>> Alex: Got it. Thank you so much. >> Samuel: Two thoughts on this which I don't
16:30
know if anyone knows the answer to but one thought is do we have a sense of where we would meet if we
16:39
were to meet in person? And the second thought is, is there a potential to get an exception
16:46
granted because of the nature of our work? Like I feel like having it not at least have a hybrid
16:52
option gives an accessibility issue? >> Kate: Yes, absolutely. Katie?
17:04
>> Katie: Hi, Reggie has a question. >> Reggie: Oh. Okay. >> Reggie: I have a question, if I was going to go there, I don't know if I’m
17:11
going to have anybody to come and get me. I have a situation where people are working during the day,
17:18
so I don't know what to do. >> Kate: I think that's going to be one of our >> Reggie ( ). >> Kate: Sorry Reggie. >> Reggie: I have a situation that I
17:29
can't get there on my own unless unless someone either takes me or tells me what to do. So you
17:39
got to come up with that situation please. >> Kate: Yeah. That's going to be our biggest issue, Reggie, is the accessibility piece for some of our members and of course one
17:49
of your co-chairs lives in the middle of nowhere in western mass. So, uh, Bill?
17:56
>> Reggie: Well, if I had to come up where you are Kate, I would take a bus fare.
18:02
(Laughter) >> Kate: Thank you, Reggie, I appreciate that, you can come hang out in western mass with me. >> Bill: I don't think anyone knows what the
18:08
Mass General court will do, but if I have to bet, I’d bet they continue this. There's lots
18:16
of legislation just as FYI even BCIL is very active on try to make this permanent. It never
18:23
passes because there's opposition from the mass municipal association, all the cities and towns,
18:30
et cetera. However, if you go up the state, you'll find many legislators on hearings and
18:37
public meetings love the virtual aspect. I cannot imagine leadership of state government trying to
18:44
go back to the old days. Any meetings like the everything is done virtual,
18:49
even if you want to say meet in person. But that's a two sense opinion on March 13th. I'd wager a
18:58
dollar with anybody if you're interested. >> Kate: And we’re really hoping that Bill is right with that statement. >> Bill: Yeah.
19:06
>> Kate: Obviously being able to have these meetings via Zoom changes the
19:11
landscape for participation and a great deal of things. Not just commissions
19:19
like this but, you know, and many other >> Bill: I think state government has a higher rate of work from home than private business at this point. It would be a radical shift.
19:29
>> Kate: Absolutely. Absolutely. Thank you, Bill. Alex? >> Alex: Just a thought and it doesn't have to be the case but as a contingency,
19:38
it sounds like Bill, what you're saying is unlikely to happen, but just in case, can we
19:46
is it worth thinking of looking at a date later in the month in case they don't get it together
19:53
right on the line or something and it straggles a little bit pass the end of the month or just so
19:59
we can plan in advance? If I have a few weeks to plan, Reggie, I can drive out and get you,
20:05
I just have to know a few weeks out before that were to happen. But I don't know.
20:12
Like I yeah. It's a thought. I'm not sure. >> Kate: I think, Alex, piggybacking on what you
20:20
just said, if there was a potential for scheduling it later in April during the school break,
20:27
then I also could be in person without issue we would just have to figure out, as we said,
20:35
all the rest of the accessibility issues for this group. Emily?
20:42
>> Emily: There are some provisions in the law that allow for remote participation as
20:49
an accommodation. There's two we would need to explore a little bit further and we can support
20:56
you in doing that. One option maybe that we hold a physical presence but that we permit by exception
21:06
remote participation by members that cannot make it. We may also want to take a vote. We have to
21:13
clarify whether this would be binding, but you could take a vote to hold your next meeting
21:18
remotely in the event that that vote would permit that. I think there is potentially some ground for
21:25
that as local for example, local commissions on disability can do that. So you may want
21:32
to try to get agreement that you would like to host the next meeting remotely and we can
21:40
help you figure out if that is sufficient. >> Kate: Okay. I think that that is probably
21:47
the best for all involved. All right. Do we have a motion to hold the next meeting virtually in order
21:59
to allow access for everyone? >> Anne: Make the motion.
22:04
>> Kate: Thank you, Anne. Anne makes the motion. Do we have a second for holding the meeting virtually next time? >> Reggie: I second.
22:10
>> Kate: Thank you, Reggie. >> Reggie: This is Reggie.
22:19
>> Kate: Okay, so is this one do we need to do a roll call vote for this one? Yes. Okay, excellent. >> Jen: Okay thank you, Kate. This is
22:30
Jennifer again. And I will read out members names. Alphabetical by your last name. When
22:40
your name is calmed, please respond with yes, no, present or abstain. Elise? Kate?
22:48
>> Kate: Yes. >> Jen: Sister Linda? Reggie? >> Reggie: Yes.
22:59
>> Jen: James Cooney? >> James: Yes. >> Jen: Samuel Edwards? >> Samuel: Yes.
23:06
>> Jen: Anne Fracht? >> Anne: Yes.
23:13
>> Jen: Alex Green? >> Alex: Yes. >> Jen: Bill Henning? >>
23:22
Bill: (Nods.) >> Jen: Camille Karabaich? Andrew Levrault?
23:30
Evelyn Mateo? Lauri Medeiros? Vesper Moore? >> Vesper: Yes.
23:38
>> Jen: And Brenda Rankin? >> Brenda: I'm here. >> Elise: Are you voting yes for a virtual meeting or no for a virtual meeting?
23:49
Like we have right now. >> Brenda: No. >> Elise: No. Okay. >> Jen: Thank you, Brenda.
23:58
>> Kate: Okay. All right, thank you everyone. Next slide, please.
24:06
>> Kate: All right. Now we'd like to discuss the recommendations that the working group
24:11
identified. And I'd like to suggest the following process. We will present each recommendation and
24:18
then open the floor for discussion. After the discussion, the commission could vote to include
24:23
the recommendation in the final report. If after the discussion, the commission decides that the
24:30
recommendation needs work, the commission could send the recommendation back to the working group
24:35
for revisions before bringing it back for a vote. So, the first proposed recommendation
24:47
is a disability history museum. The first recommendation that the working group
24:53
came up with is to create a museum of some sort dedicated to preserving the history of residents
25:00
from state institutions. The museum would also highlight the independent living movement,
25:06
the process of deinstitutionalization, and the ongoing efforts to integrate people with
25:12
disabilities into society. It would be a key resource hub, offering links to records and
25:20
information for former patients and their families who are looking for their historical records.
25:27
Whether it's a physical or a digital space, the goal would be to make it easily accessible to
25:34
everyone. I’d like to open up the floor for discussion on this first recommendation.
25:43
Does anyone have any thoughts, considerations, ideas on this particular recommendation?
26:02
Even if it's just to say, yep we love it. Bill go ahead. >> Bill: Yeah we love it. I mean
26:12
it's ambitious for sure. I think preserving the history is great. I think intertwining it
26:19
to make it contemporary, too. So is talking about an independent living disability rights movement
26:25
which is never going away, for sure. And in current days, it's probably more needed than it's
26:33
been the last few decades. I think those things are great. Again, it's easier said than done.
26:40
>> Kate: Absolutely. >> Bill: But you know you can start with I mean Alex, you can always turn to Alex too since he does everything,
26:52
but I know there's lots of digital stuff out there. I'm not a digital maven, I like going
26:57
in a real museum which sounds a lot harder than putting something digitally, but one can lead to
27:03
the other, I don’t know. So, go get ‘em. >> Kate: Absolutely, and it's important to remember too, that these are just recommendations. This is a first step in us and encouraging others
27:16
to think about what this looks like and what the steps are to get there. >> Bill: I can >> Bill: I can tell you an anecdote I was taking
27:25
my kids when they were little through the American museum of history at the Smithsonian and they had
27:31
a temporary exhibit on disability rights and it featured some of the people I had worked with on
27:37
Cape Cod and Cord and some of our ADA work and you would have no idea what that was like and to have
27:48
forgotten people out there and their families and everything, it's just would be powerful.
27:54
>> Kate: Absolutely. Thank you, Bill. Alex? >> Alex: Thank you for the voluntold, Bill. I
28:06
actually – so I like all the points, like to preserve history institutions, the independent living, the institutionalization, the hub of information. I would love to know what
28:17
people think about this, this idea of physical or digital. I'm very undecided on it. Teaching
28:24
it seems like my students are all on their devices and I can see real benefits to that. At the same
28:30
time, I'm with you, Bill, on the old school end. There’s something about just being in a museum
28:36
space that feels really good but don't really actually have a scope of that. So, I just sort of
28:43
I'd love to hear thoughts on that from folks. >> Kate: I think the best word for the scope, Alex, is monumental? (Laughter)
28:51
>> Kate: Sam. >> Sam: I think I see pros and cons for both.
28:57
I think for some folks, a physical space is more accessible. I think some folks a digital space is more accessible. So, I see pros and cons for both. My one con about a physical space would be
29:13
like what would the collaboration between the museum and the archives be because I think that
29:19
is a question because it presumably some records would not want to be displayed and things like
29:25
that so what is the relationship between museum staff and archive staff I think is a question. Or
29:32
maybe not at that point yet or maybe just making a recommendation. But it's something I flag of oh
29:39
what would happen with that if that's the case and I want those two things talking to each other. >> Kate: Sam, I'm going to wait for a day you're working and clean out my attic and
29:48
bring it to you. (Laughter) >> Sam: Great. I look forward to it. >> Kate: Perfect. Vesper.
29:54
(Laughter.) >> Vesper: I think there's benefits in both kind of like Samuel was saying, and I think I'm part of another group part
30:06
of the Smithsonian and on average some of these museums, part of what extent is needed and you
30:19
need the right temperature or the right lighting for certain artifacts and materials. It take it is
30:24
a long time. So I've heard, it can be an upwards of 35 years to get a large museum like that going.
30:34
But I mean it really depends, I think if we wanted physical space and wanted to cut downtime on that,
30:42
it could be a gallery, like a historical gallery of some type, you know, with meeting some other
30:48
requirements. But I do think there does need to be a digital element for it to be successful.
30:53
So that's kind of my $0.02' there. >> Kate: Thank you. I like that historical
31:00
gallery idea as well. Bill, go ahead. >> Bill: Yeah, just to I'm very much tangible,
31:08
not a digital person but the relevance of it to add something. And I didn't know about this
31:13
until last night. But American experience will be coming out with something on ADA35 I believe in
31:22
April and they're drawing on the digital archive, the disability museum of adapt,
31:29
among others. So some of my colleagues were sharing that last night. So the practical
31:35
application of something digital to go into a much broader audience was exhibited to me last night.
31:44
Not really connected to this. But, you know, both mediums if possible is great. But digital
31:50
certainly in this age has lots of validity. >> Kate: Absolutely. I think ideal world would be
31:59
being able to make both happen. Any other thoughts on this particular recommendation? Alex?
32:08
>> Alex: I'm thinking about with the report, if we say something like this,
32:14
it sounds like folks broadly like this idea. I imagine that the question of readers of report,
32:24
various places like that, their question is going to be, okay, how? Or what's the first step? So I'm
32:33
curious about that idea. Maybe it goes back to what you were saying, Sam, about making sure the
32:40
right people are involved early on. Is the right recommendation like a group of people somehow come
32:49
up with a feasibility thing put forward in a certain period of time. What's a recommended
32:56
good process step in your experience that take your idea and start to put it into action?
33:07
>> Kate: Yeah, thank you, Alex. I think the idea recommending some feasibility studies.
33:14
It's the first step we took with the school property and with the property of our museum.
33:22
I think looking at that figure out what the real true first step is. After you have the group of
33:30
people and the thought of where is it going, then we can say, okay, here's the actual first step.
33:39
Which we all know is money. Kidding (Laughter.)
33:44
>> Kate: Any other thoughts on the museum recommendation? A point that I wanted to
33:59
raise personally is whether or not we continue to use the word museum. Very often we have
34:07
talked in I think in hearing Sam talk in our last smaller group meeting about the fact that
34:17
maybe what we're creating is what we're suggesting is more an education hub, education network. Is it
34:26
a museum? Are we talking about I don't know how to put this in English, but I'm going to say are
34:34
we talking about "museuming" individuals with disabilities or are we talking about
34:42
keeping it out of a stat sick way of looking at disability, history, advocacy, and the future?
34:51
That's my $0.02' to throw out there. Vesper? >> Vesper: Yeah, I agree. I think in a lot of
35:04
conversations I've been in about museums, there's often a leaning towards of an
35:10
educational center to keeping it active. And I mean I'm thinking of the Ed Roberts
35:17
center. It's an accessible center. It has the space is. It has historical gallery space.
35:26
>> Kate: Mm hmm. >> Vesper: But it has contemporary use and maybe that's something similar that we do. And it's great. That's on
35:33
the west coast. What do we have here on the east coast. That would be a great a great way to think
35:40
about. You have some of the oldest institutions in the country here in Massachusetts. So I feel like
35:47
we do have a charge to do something with this. >> Yeah. Thank you Vesper. I like that term
35:54
contemporary use. Museum feels like one moment in time whereas I think some of the other words
36:06
that have been used by you Vesper, by Sam, by Alex and by others, make it more like an
36:12
active ongoing feeling. But that's kind of a language piece that we can think about later.
36:26
We have time if anyone has any other thoughts, ideas, concerns about this
36:33
particular recommendation? Alex go ahead. >> Alex: One thing we could do is I could try
36:51
to draft some very simple bill language. You know a lot of commissions that issue reports in the
37:02
appendix, they'll include like draft language just to help anyone in it that might be useful
37:09
so drafting a funding or wreck session for a budgetary item or some sort of legislative
37:16
action but gives something to go off of. Does that seem like a reasonable step. I mean it's edited to
37:26
high heaven by everyone but as a stub for it. >> Any thoughts on it? I see Sam nodding.
37:37
>> Yeah I like the it idea of thinking of a feasibility study and looping in
37:46
different folks. I think one concern I have is just like like okay, if archives has all
37:57
the records, there's a separate entity that's a museum. How do things get to point A and point B?
38:04
What's the preservation concerns. All of these are like a huge question that
38:11
I think would need to be like worked out. >> And I think that's probably the most daunting
38:23
part of the conversation. Alex, go ahead. >> Alex: So Sam if you were to not on the spot
38:34
now, but over the next week or so, would you if I worked on language around like a
38:41
fees want study and just getting that kind of baseline in place but I left blank like
38:47
who is who is in that group of people who we suggest to do that feasibility study,
38:53
like a committee of three or committee of five, is that something you would feel comfortable to draft
38:59
in what stakeholders need to be part of it? >> Sam: I think that it is easier for me
39:13
repository than a physical museum. I think that has a lot more different stakeholders that would
39:20
be concerned about that at archives. I think that a virtual thing. I'm thinking of something like
39:28
in the vein of digital transgender archive that a repository that assembles stuff from a lot of
39:36
places, right? But don't physically have any collections. That I think is something that
39:43
I think can more see how that would like work right now. I think with when you deal with,
39:55
you know it's one thing to like make copies of stuff and have that at a museum or something
40:01
but when you're talking about things leaving the building and the preservation concerns of that,
40:07
that's like a huge conversation that would need to involve like everybody at archives probably.
40:14
>> Okay. >> To some degree or another. That would be like a huge conversation. >> Kate: I wonder, Sam and Alex, if part of our
40:25
recommendation is creating a roadmap, for lack of a better term, or an outline, something that tells
40:35
us, here's what the initial conversation looks like, here's where it starts to expand, and here
40:43
we start figuring out for this piece this piece this piece because none of us can jump in whole
40:52
hog and jump in. That would be great. There's a lot of moving parts. Maybe part of what the
41:03
planning process becomes is maybe we're the group that says, there needs to be representative of
41:10
archives. There needs to be a museum specialist. There needs to be an attorney, an accountant,
41:17
whatever it is. Representatives from the agency. We need to make a suggestion of who all needs to
41:24
come to the table. >> Alex:
41:30
I like that idea. I wonder, Vesper, from the national conversations, or anyone,
41:44
the consultant from the Smithsonian that developed their digital and physical exhibits on disability.
41:52
Is this something that we could ask her? Like what are like a handful of people? If you
42:00
create a preliminary feasibility study knowing the documents or artifacts or archives, few ( ) that
42:11
has a large archive, what would you recommend? Is that something we might be able to do?
42:21
>> Vesper: Yeah that would be Kathryn (name?) at the Smithsonian. I haven't talked to her
42:34
because it is a federal position. But I can reach out and maybe do a group e mail
42:44
of some type potentially. >> (Multiple People Speaking): Yeah. >> That would be big >> Kate:
42:53
Okay. We have about five minutes to take a discussion before we take a break. Does
43:00
anyone else have any other thoughts? I know this is a big topic to try to take a bite of at the
43:07
moment. Okay. Since it is 3:55, why don't we take a five minute break and come back together at 4
43:15
o'clock and we can continue our discussion. That sound good? Everybody's running away already.
43:30
>> Jennifer: Kate, I just wanted to mention that Elise just had to go for the day.
43:46
>> Kate: Does that leaves without quorum Jen? >> Jennifer: I think we just needed
43:56
quorum to start the meeting. >> Kate: Okay. Now I have to find where I am in
44:04
the annotated agenda because I totally lost it. >>Katie: I think we're at the bottom of
44:17
page seven. >> Kate: I have it open on my cell phone, if I turn my phone, it goes wherever it wants to go.
44:27
>> Katie: Yep. Get that. >> Kate: I love technology but it's
44:33
not always as helpful as I'd like it to be. So... We’ll give folks one more minute, especially since
44:51
we kinda gave ourselves an extra 5 minutes. Ok. >> Bill: I'm here I'm just eating something
45:00
so I'm staying off screen. >> Kate: That's totally fine. >> Jennifer: And just wanted to let you know that a CART transcriptionist
45:10
is only with us until five. >> Kate: Yeah hopefully we
45:15
can wrap up our discussion by five. >> Jennifer: I'm going to start recording.
45:22
>> Kate: Okay. >>
45:32
Kate: So this was for a perpetual care fund. This fund would provide the financial support needed
45:49
of the ongoing maintenance of cemeteries taking care of things like landscaping,
45:56
road repairs, and general upkeep. On top of that, the fund would offer grants to
46:02
help community groups create memorials where former patients and residents of
46:08
Mass institutions are buried ensuring these individuals honored and remembered for future
46:14
generations. And I would like to open up the floor for discussion on this particular recommendation.
46:29
And this suggestion came out of there's a Belchertown State School carousel fund
46:36
that was establish the when the care set was auctioned off and those funds do help
46:42
individuals to be able to go on trips or have the money to participate in recreation activities. So
46:56
that was kind of the basis for this particular idea. Is there a discussion about potential
47:06
for the perpetuall care fund? Alex? >> Alex: That was also something that was
47:16
suggested a while ago but we found a draft somewhere along the way from representative
47:28
Marty rough and senator Diane Wilkerson for some kind of care fund. And and it's just nice there's
47:39
already some built language that we could look at that we know at least was presented. I don't
47:46
think it went past the initial proposal but it's something that was drafted by a you know, with
47:54
a house council person aware of it or something. >> Kate: That's fantastic to have a foundation.
48:06
We brought this up because the folks memorializing cemeteries are close
48:16
to retirement and right now in some cases they can be unsure how this care continues.
48:38
All right. So we'll move onto the next recommendation if there's no discussion on this one. And I lost my place again. And the next one was the potential for a
48:52
statewide Day of Remembrance, which actually does exist in a few places already. So this day would
49:00
include ceremonies to honor those who lived in Massachusetts state institutions, recognizing them
49:07
as important parts of the state's history. The Day of Remembrance would be a chance to reflect on
49:13
the progress we've made in reducing stigma around disabilities both psychiatric and developmental.
49:21
It would help raise awareness and educate the community about the ongoing efforts for inclusion and accessibility. To make this official, we'd ask Governor Healey to ask a
49:33
proclamation ensuring that the state formally recognizes and supports the event. And I I'd
49:40
like to open up the floor for discussion on this recommendation. Anyone have any thoughts on the
49:51
potential for a Day of Remembrance. Vesper? >> Vesper: It sounds like it could be a pretty
49:58
good idea. If we do recommend this, it would make sense for it to be during disability pride month
50:08
or something like that. >> Kate: Yep. >> Vesper: There's a disability day of mourning, too. So I just wonder
50:20
where this may lie. There's disability awareness week. So just thinking about that.
50:28
>> Kate: Yes that's much appreciated. Right now for we some the cemetery celebrations, we use Memorial Day, but it would be nice to have this piece of history separated
50:40
and give it a little extra attention it. Bill? >> Bill: I get mixed views on these things and I
50:49
think they're good in their basic substance. I would support it only in condition that it's
50:57
really scrutinized and can relative to any other things we’re specifically pushing for that require
51:06
say law change or money because legislators and public officials will default to the easy way
51:15
out and say we're having a day at the state house and come and pat people on the head or something.
51:22
Not that there's bad legislators or something, but you'll end up with a ceremony for 200 people which
51:29
is great and we might lose a bill or something for the easy defaults. So how these things come
51:37
out and ask I speak from experience. >> Bill: We had something move and
51:43
offered a day and take a day without telling me and were offered a day and there you go.
51:51
So, anyway, it's just go for it, but the context on when and how is really important.
52:00
>> Kate: Yeah. Absolutely. Agreed with that. You know, ideally, we want it all.
52:08
>> Bill: But you may not, and then you may get a proclamation that come
52:14
>> Kate: Yep. >> Bill: And somebody in the state house basement who writes those proclamation and signs them. >> Kate: And we appreciate that thought because
52:22
we did not think that when we suggested this that it could potentially be a fall
52:28
>> Bill: I'm not saying it's bad, just don't get it paired. Timing all that stuff is how you move
52:36
forward on it as opposed to suddenly we're moving on something in the state budget and then we get
52:44
a proclamation. That's all. >> Kate: Okay.
52:49
>> Kate: Absolutely. >> Bill: That's all. >> Jennifer: So I can't get my hand to raise. >> Kate: Okay.
52:58
>> Jennifer: This is Jen for from CDDER in preparing for the presentation fur today I
53:04
did look for the bill of State of California that has their annual stay of remembrance,
53:13
it's actually tied to the day of the bill that was signed that mutt their California memorial project
53:20
in place: So that's it the reason they those that particular day in September for the state because
53:28
it also memorializes the bill that authorizes the creation of the memorial project and provided
53:35
the funding for the cemetery restoration. >> Kate: Okay. Beautiful.? Any other thoughts
53:46
on the potential Day of Remembrance? Alex? >> Alex: For what it's worth, just two cents on
53:58
this, I've never been a huge fan of these kinds of days. It's for many of the pitfalls that bill the
54:07
scribes. I think they've super well intensions. There's nothing for the people that do them, but I
54:13
think they can be used to sometimes not talk about or do the harder things. I don't want us checking
54:21
a box for someone who wants a photo Op. >> Kate: Absolutely. Our next recommendation
54:38
is a request potentially for a formal apology. Asking the State of Massachusetts
54:45
to issue a formal apology for the neglect of certain state run cemeteries and for the
54:51
harm caused by state institutions that in some cases did more harm than good.
54:57
This apology would recognize the mistreatment and failures of the system and emphasize the
55:03
need for accountability. On top of that, the state would commit to educating the
55:09
public about the history of state institutions for people with disabilities in Massachusetts,
55:15
ensuring that we don't forget the past and continue to learn from it. We have found a
55:21
couple of examples from other states which could serve as a model for Massachusetts to follow.
55:28
For example, one apology was issued by the Georgia of Department of mental health. Department Thomas (name?) and the director for the of Georgia Department of mental health. He made a formal
55:52
apology for the neglect of cemeteries at Center State Hospital (name) whereas many as 30,000
55:59
former patients may be buried. He also apologized for the ways in which state institutions sometimes
56:06
harmed people instead of helping them and shared a plan with how things will improve moving forward.
56:14
Commission members should have received a copy of the text of the speech this week.
56:20
The second example is an apology issued by the State of Minnesota. In 2009, the Minnesota
56:27
legislature passed a resolution which was signed by Governor Pawlenty offering an official apology
56:34
to Minnesotans with disabilities and those with and mental illness, as well as their families
56:39
for the harm caused by institutionalization in the state going back as far as the 1800s.
56:46
This resolution represents the culmination of decades of work by activists who have focused on
56:52
closing institutions, creating more community and family living options for people with
56:58
disabilities and mental illness, honoring those who lived and died in Minnesota’s institutions,
57:05
and acknowledging this painful chapter in the state's history. Commission members should
57:10
have received a copy of the resolution and a news article about the resolution this week. I'd like to open up the floor for discussion on this particular recommendation.
57:23
Does anyone have any recommendation on requesting a formal apology? Vesper?
57:33
>> Vesper: Yeah, I think that there's been quite a few different apologies over the years that we
57:39
can definitely reference. I think, if anything, if we talk about purpose of this commission,
57:48
it comes to starting from that place, so I believe this is something we should do.
57:56
The American Psychiatric association issued an apology in 2018 for its role in perpetuating in
58:07
racism and is violence that related to racism, dating back to the 1800s. And I think yeah. It's
58:17
a good place to start. When you talk about the historical record, apologizing, acknowledging
58:23
what was done and finding ways to move toward. Like when we’re talking about archiving a lot
58:29
of these things and being active in the community and celebrating people with disabilities, yeah.
58:38
>> Kate: Absolutely. Thank you, Vesper. Any other thoughts on the
58:43
potential request for a formal apology? Alex? >> Alex: I really like the language of the
58:54
Minnesota bill. I just really like it. I always kind of looked to it's like a brief historical
59:02
aside, but the Fernald and institution in New Jersey called Vineland and the institution of
59:09
Minnesota where the fair bow institution were the three main places where so much of this was shaped
59:17
in the 20th century and Minnesota has just consistently done a lot of really innovative
59:24
and good and forward thinking respectful work that's really thoughtful and always seems to hit
59:30
all the right points. And when I look at this bill, I think it's just the subtle language is
59:35
really nice. They say some people were really harmed and they also and I have reservations
59:43
about that because it was many but they also say thousands of children were taken from their parents which is the right balance there. And they talk in specificity about things that I think many
59:55
people wouldn't know and it would be very powerful for them to hear from the leader of our state.
1:00:03
>> Kate: Yeah. >> Alex: People were forced to what is
1:00:09
effectively enslaved labor. Patients were forced into incredibly unfair and difficult situations.
1:00:17
There's a lot built into this language. I just really like it. I think it could be a very good
1:00:22
model. And I think it's not inappropriate. I like Hester's comments, in the other one,
1:00:31
the doctor but the governor of Massachusetts ordered the flags of the Commonwealth of
1:00:38
Massachusetts at half-staff when Walter Fernald died. The Governors of Massachusetts regularly
1:00:46
met with superintendents and institutional leaders to institute policies and the governor of Massachusetts was the head I think originally of the board of the first of these schools, of the
1:00:59
original version of the Fernald school. I think for that reason it's not a stretch or a reach or
1:01:05
unreasonable to expect that a governor today can then take up the legacy of their predecessors and
1:01:11
say this was wrong. And I would rather hear that from the governor than from - I don't think that
1:01:17
comes from the Commissioner of DDS who gets it, or the Commissioner of DMH who gets it. I think it needs to come from the governor. >> Kate: Thank you, Alex. Anyone else have
1:01:29
thoughts on potential for formal apology? Bill? >> Bill: I would support for a multitude of
1:01:42
reasons. Public acknowledgement, and once you get that acknowledgements it sets up
1:01:47
a barrier to a model that shouldn't have never existed. So how can you go back when someone's
1:01:56
apologized for the atrocities. >> Kate: Absolutely. >> Bill: Otherwise there's elements of denial too.
1:02:03
>> Kate: Mm hmm. Absolutely. >> Bill: Just Korea is still
1:02:11
chafing at Japan and it influences international relationships where a lack of apologies for what
1:02:18
Japan did during the war and the comfort women and stuff like that. It’s a pretty serious case but we
1:02:24
know what went down there is pretty serious too. >> Kate: Absolutely. And I think to piggyback
1:02:32
on what Bill has said, we are one of the few New England states that still has large scale
1:02:40
institutions open and operating, and one that was constructed not too long ago at Worcester
1:02:46
with the Worceste recovery. So to continue to add the Massachusetts voice to the apologies
1:02:56
that already exist, to Bill's point, publicly acknowledging the outcome of institutionalization
1:03:08
will hopefully help prevent the slip back into it. And I agree with Bill and I agree with
1:03:14
everyone else as far as what that apology can do to lend to the discourse around this topic.
1:03:28
Does anyone else have any thoughts or concerns or ideas? Because that is our last recommendation.
1:03:45
Vesper? >> Vesper: Yeah, I think if we move forward with the formal apology, we can definitely ensure that there's
1:03:57
a commitment to continued work at community disability and behavioral health initiatives as
1:04:07
evidenced by right, we have community behavioral health centers, we have these initiatives,
1:04:14
as a way of, you know, there could be a potential reference to Olmstead, which is the right to live
1:04:20
in community desegregated from institutions, there could be a reference to all of these things.
1:04:27
And again, I think it's an excellent starting point and it shows that Massachusetts commitment
1:04:34
to this robust community initiatives. >> Kate: Thank you, Vesper.
1:04:42
>> Kate: I think a lot of it, too, is also if Massachusetts was first and foremost in
1:04:50
creating these institutions, we should be first and foremost, in owning what the fall out has
1:04:59
been from institutionalization. Alex, go ahead. >> Alex: That and one thing that just occurred
1:05:05
to me, I think we do just want to add so people can I think this is an idea that
1:05:11
could be really hard for people who don't know any of this to understand at first. And I think
1:05:17
at one of the connecting points that we've seen through our work and so core to what we're doing
1:05:22
is the records related stuff. Like the mention of the cemeteries, I wanted to gauge if I start
1:05:30
scribbling away and using the Minnesota stuff as an example, if people feel okay with adding
1:05:36
also the records, preservation, and access we read in the report and in the first person
1:05:45
stories from the interviews that CDDER did is if that's okay to also consider adding.
1:05:52
>> Kate: Okay. Does anyone have an issue with Alex adding language regarding the
1:06:03
records related issue? Okay. I do want to back track and acknowledge Sam's comment about the
1:06:14
Day of Remembrance. Sam would you like to just speak a little bit about the comment you put in the chat? >> Sam: Yeah. Just like I and this is just my
1:06:28
personal opinion but I do wonder if in terms of remembrance days or days that are like I wonder
1:06:39
if it comes like to me it has more meaning if it comes organically out of a disability community
1:06:48
movement and not from the state saying like this is now the day when we acknowledge this. I don't
1:06:55
know. I think agree with Bill where I think I would feel concerned that that could be,
1:07:04
you know, a way to kind of acknowledge but yet not have real action at the same time.
1:07:14
That's something I feel concerned about the day of acknowledgement. I think it could be powerful
1:07:22
and meaningful but I feel it being used as like okay. We checked this box kind of situation.
1:07:32
>> Kate: Yeah. And it's an absolute legitimate consideration when thinking
1:07:38
about something that could turn into a box checking moment as opposed to the number of
1:07:48
successes that grass roots movements have had. Especially you know disability history it has been
1:07:54
about grass roots movements, so it's something very important to think about. Thank you.
1:08:02
Okay. Any other thoughts or concern or questions that have come up on
1:08:07
any of the floor recommendation. >> Reggie: I want to say that we have to take of our own yard instead of going our yard. I don't know which direction to
1:08:18
go to because it's confusing. And I told Jen that. I say we have to take care of our own
1:08:28
and now we're going all over the place. You don't know which direction you're going to.
1:08:34
>> Kate: Reggie can you tell me more about the feeling of going all over the place?
1:08:40
>> Reggie: Well we're going like outside the area. We're not looking inside the area and stuff. Like
1:08:47
we're talking about, like I brought up to Jen how the mayor wouldn't talk to disability people,
1:08:54
she didn't want to associate with a disability group, that's a real concern, you know. Those are things we should focus on. >> Kate: Okay.
1:09:03
>> Reggie: We haven't done it. >> Kate: And I think as we go along, Reggie,
1:09:08
and other sections for recommendation, those >> Reggie: Yes. >> Kate: That's where those come up. >> Kate: Right. We decided to tap a
1:09:17
memorial piece first because I want no say it's the lightest lift I guess. But
1:09:25
we do have other very serious topics >> Reggie: I think if we're going to do
1:09:32
if they’re going to do anything, they got to make sure if we get it whatever we get,
1:09:39
that those things that we put if it's a museum or if it's a walking trail, whatever, those things
1:09:46
got to be locked up so no one steals it. >> Kate: Agreed. We need some security.
1:09:51
Absolutely. But Reggie I'm going to make a note about the point you just made about the people not wanting to see and meet with the actual individuals with disabilities.
1:10:04
>> Reggie: Right. >> Kate: Because I think you need to touch on that. Thank you for that, Reggie. >> Reggie: I'm saying Kate, the last time
1:10:15
someone brought that up, and I said well we got to bring it up. That's why I said bring it up to the attorney general and the governor and
1:10:25
find out what's going on here: Because, you know, they haven't people haven't gone through what we've gone through, you know? >> Kate: Exactly, exactly. And I think having
1:10:38
those direction conversations with those who lived with it is exceptionally important.
1:10:43
>> Reggie: This is a lot to bring up and talk about because it's not easy
1:10:48
to be telling people about this stuff. >> Kate: Agreed. It’s not anyone’s favorite
1:10:55
topic. (Laughter) I don’t understand why >> Reggie: Like I told you. If you want to
1:11:03
get together and you find a way – >> Kate: I'll come out and visit
1:11:09
you that's probably easier. >> Reggie: I'll come in your car. (Laughter.) >> Reggie: We'll go somewhere up there.
1:11:19
>> Kate: All right. Sounds good, Reggie. >> Reggie: Okay.
1:11:24
>> Kate: All right. We ended a little earlier than expected. Jen, do we have any next steps. I see a
1:11:36
note for it in the agenda but >> Jennifer:
1:11:44
Yeah -- any other recommendations? >> Kate: Is there anything else anyone would
1:11:56
like add to the framework of remembrance or recommendations. I know it's a lot of
1:12:01
information to take in. And of course, the special commission e mail is always
1:12:09
open for suggestions and thoughts if they occur after the meeting. Okay. All right.
1:12:26
Well thank you, everyone. We appreciate that robust discussion of our recommendations. And
1:12:32
we're looking forward to seeing you at the next full commission meeting in April. And CDDER will
1:12:38
be following up with the meeting information and any other information about scheduling that comes
1:12:45
up for April. And we should know fairly obviously after the 31st, we'll know more about the open
1:12:53
meeting law changes. Does that work for everyone? All right. Excellent. If anyone has any questions
1:13:04
before then, feel free to contact us. As I said, the special commission e mail is always open. Do I
1:13:13
have a motion to adjourn a little bit early? >> Reggie: I have a motion to adjourn, yes.
1:13:22
>> Kate: Thank you, Reggie. All right do I have a second. >> Alex: I will second that motion. >> Everybody wants to leave. So we'll
1:13:33
have a roll call vote to adjourn. >> Jennifer: Okay. Thank you. This is
1:13:39
Jennifer again, from CDDER and I will read out each member's name and if you
1:13:45
account just respond with yes, no, present, or abstain. Elise Arronne (name?)? Kate Benson?
1:13:58
>> Kate: Yes. >> Jennifer: Sister Linda Bessom? Reggie Clarke? >> Reggie: Yes.
1:14:07
>> Jennifer: James Cooney? >> James: Yes. >> Jennifer: Samuel Edwards? >> Sam: Yep.
1:14:14
>> Jennifer: Anne Fracht? >> Anne: Yes. >> Jennifer: Alex Green. >> Alex: Yes. >> Jennifer: Bill Henning. >> Bill: Yes.
1:14:21
>> Jennifer: Camille Karabaich? Andrew Levrault? Evelyn Mateo? Lori Madeiros? Vesper Moore?
1:14:35
>> Vesper: Yes. >> Jennifer: And Brenda Rankin? I think she left for the day. Okay. Thank you. I don't think I missed anybody. Did I miss anyone?
1:14:47
>> Kate: No. >> Jennifer: Okay. I believe that's everyone, Kate. >> Kate: Thank you, everybody. The
1:14:54
meeting is officially adjourned. Thank you all, and have a great evening