Speaker 1 (00:05):
This recording is an offering of Networks for Training and Development's online university.

Jessica Stover (00:15):
Hey, everyone. Welcome to this quarter, because we're doing this quarterly, this quarter's Think-A-Thon. This is Jessica Stover with Networks for Training and Development. We're delighted to be with you today to be talking and sharing insights, pondering, trying to figure things out. The topic this quarter is privacy and upholding rights. We do this every quarter, and this month is no exception. We'll do another in another three months. But sometimes thinking differently is necessary. And most times, because we become so immersed in supporting someone, the everyday details are missed. This is an opportunity to think about people that we all may know in our lives, that we may be supporting, or be involved with personally or professionally, that we might want to be thinking about things differently, particularly surrounding privacy and rights. Certainly, this is a challenging, personal, and difficult topic but is necessary to discuss and think about with an open heart and head on. We're really thrilled to be together today to be talking about this.
But to just get us started, and we certainly don't have to stick to these questions and points, but I thought maybe this would just be a nice entree in talking about this topic. Right now, we're in the time of "COVID". We are in the midst, it is March 12th, 2021. It's been a year or nearly a year or slightly over a year since the pandemic began. In this time of COVID, what are some of the concerns that you're seeing specific to privacy and rights? What could be done or done differently? Do you think this time has exacerbated this issue or is shining the light on the issues surrounding privacy and rights even more so? I'm just going to open it up. Anyone that'd like to share or start off, I welcome you to do so.

Michelle Sparling (02:21):
So Jess, this is Michelle. I think one of the things that's been in the news very frequently, I've seen it almost daily now, it's been going on for a few weeks now, even a couple months consistently, is around the lack of vaccinations protocol for people with disabilities as well as just testing in general and the rights of people. Why have people with disabilities been set aside? There's been just lots and lots going on around that. I'm curious what other people think about that topic too and what you've all seen around that and articles you may have seen and how things are improving and how... Some organizations I've seen are working on getting the vaccine to people they support, they're finding channels to do that. But I think that's been something I've seen most recently.

Rosa McAllister (03:16):
I would agree, Michelle. This is Rosa. I would agree. It's something that I've been paying attention to throughout the past year with this pandemic, with COVID-19, which I guess is COVID-20 or COVID-21 now or whatever, is that there has not been much publicity about its effect on people with disabilities. Since that is the primary group of people that we are engaged with and support through networks, although certainly not the only folks that we do, it really caught my attention actually as I started realizing the numbers of people that I knew around the country, frankly, who were sick and who had disabilities and many of which who had died. That impact has not hit the general news stream, I don't think. I know I've brought it up to a number of people, friends and others.
They're appalled and amazed that, "Well, why aren't we hearing about this? Why is that happening? Why are they being affected? Don't they have the medical care?" I think there's many underlying reasons of why it's affecting some groups more than others. But this is not a group that's being highlighted a lot until more recently, as you pointed out. I think family members and other people are really vocalizing now because of the lack of access or the diminished access to the vaccine. I think it's becoming a bigger issue as well as other groups that are being highlighted now. I think the access to the vaccine is highlighting other groups too that have been horribly affected by COVID for multiple reasons, and yet we just didn't know or didn't see or the general public wasn't aware.

Tracy (05:02):
One thing that really stood out to me is that we haven't really considered the fact that a lot of people with intellectual disabilities have a multitude of people involved in their lives that are not their family. They don't have control over who those people are as they come and go, and so I think their exposure has been greater than what we may have thought. To me, it's just as risky living in maybe a community living arrangement and having a lot of support people coming in as it is for the elderly living in skilled nursing facilities with a variety of caregivers coming and going. There's just no control over that.

Rosa McAllister (05:47):
Right, Tracy. It's really true. I know we know of some agencies, we heard of some agencies in Philadelphia, human service agencies, that did some pretty extraordinary things in trying to move around staff or to take staff that were previously part-time and instead make them full time so they weren't moving around between agencies as much. They had more of their livelihood covered in one location, if you will, to limit that. But there's so many... This issue is really very deep.
To the issue that we're talking about today about privacy, oh my goodness. I cannot imagine the privacy issues that people are living with now under the guise of safety and concern. I get it, but people in nursing homes, people in supported living situations of a variety of different types, where are their rights these days? Are they getting a say in being able to get out and about? Or are they being overrided because of safety protocols and the needs of others? It's not an issue that I would want to have to make a decision about, that's for sure. I understand all the sides to it, but their potential rights violations have to be at the wazoo, have to be huge.

Michelle Sparling (07:13):
It's making me think, Rosa, where we've heard in the height of COVID where people were moved from their homes to go live in other people's homes because of staffing issues. I can't imagine being uprooted like that. All that's familiar to you, your life, and for someone to just say, "Sorry." We get it, it's because of safety. It's to keep everyone safe and to maximize the staffing, but to have to live with that and live through that. I'm curious how many organizations have been able to slowly work towards getting back to what their normal used to be and for people to go back to their homes again and for staffing to start to begin to look a little bit more normal.

Jessica Stover (08:01):
This is Jess. What comes to mind, this is beyond an impossible situation, certainly nothing we've ever seen or experienced in our own lifetimes. And Rose, I think you touched on it, we all have, is obviously having the utmost respect for everyone just trying to do their very best and being mindful of health and safety and those concerns. But hearing that people are being prohibited from seeing family members, and particularly say if there's family members or they themselves don't use technology and aren't able to Zoom with someone or aren't able to Skype or do a video chat through FaceTime or whatever it might be, but not being permitted to see those that are closest to you, that's been a really difficult thing to hear and has really been challenging.
I know, personally, for me to try to wrestle with of how right is that? How good of a thing is that? Should that be? I don't know. That's one of the pieces that continues to trouble me, I think, the most. It happens across the country, frankly, globally. It's happening. When is it okay? I don't know. I don't know.

Michelle Sparling (09:35):
I think we've seen through the last number of months from just being part of some meetings that the larger the organization, the more challenging situations that they're facing with upholding people's rights. Maybe it's because they have so many people that they're responsible for, with people they serve and their staff, that they're locking things down, if you will, to keep people safe. And then the smaller organizations, it appears, it's a smaller sampling that I've noticed, but that they seem to have a little bit more flexibility and a little bit more freedom in some of the decisions they're making about how they're going to follow through with their protocols. They're open a little it more. It's just interesting to see how that's all unfolded.

Jessica Stover (10:23):
You know, Michelle, that you brought that up, the word protocol, that just hit a light bulb moment. Providers have their protocols, but I wonder how many people are being supported to establish their own personal protocols. I think we all established our own protocols and where our comfort level is and where our right to risk is, because we all have this right to risk and what we were comfortable and not comfortable in doing. I wonder how many people they themselves who may be supported within the "system" or even those outside of that system, if you will, have developed their own personal protocols and have had those discussions.

Shauna Roman (11:05):
Yeah. This actually is, I'm wondering that, or if this is almost an age old discussion or topic around honoring people's rights, dignity of risk, which was what? From the 1980s, maybe '90s? Someone help me out with the date, but-

Jessica Stover (11:27):
Before that, before the '70s-

Shauna Roman (11:28):
Before that? Yeah.

Jessica Stover (11:30):
... the '70s and the '80s. Yeah.

Shauna Roman (11:32):
Right. I just feel like, are we still in this debacle or this quandary of figuring out how to support people, honoring who they are and being okay with and trusting that we give people enough information and that we're trying in terms of informed choice? These are age old discussions. We're talking about COVID now, and I know in no means do I want to minimize the dramatic impacts of this health crisis we've been in now for almost a year, but I think one of the questions you raised, Jess, was shining a light on something that we've already been wrestling with. I feel like that's at the core of this. This is not new, and that's disturbing as well.

Rosa McAllister (12:28):
I totally agree, Shauna. I was thinking that similarly. It takes me back to a quote from our good friend, John O'Brien, a million years ago, or maybe not quite that long, but a while ago, that's for sure, where I remember in a meeting where he said with a bunch of us who were struggling with what do we do about when someone is making a choice that we know is not safe or maybe even illegal or whatever? What do we do? Because we want to honor their right and their respect, and yet don't we also have some level of due diligence? And blah, blah, blah, blah, blah. I remember a quote that he said, or something that he said that has stuck in my brain forever since. He said, "Nothing about this, this meaning Person-Centered Planning and helping people exercise their rights and speak their dreams and their fears and all that, nothing about this is about letting people die with their rights on."
I'm just going to repeat that again, because I remember it hitting me like a ton of bricks, and I thought that so many times. It doesn't provide me an answer, but John O'Brien said, "Nothing about this is about letting people die with their rights on." So where do we draw that line in the sand? Whether it's about going out and about without a mask or letting people come and visit or hugging people or having to forbid having relationships. Even outside of COVID, even in other times, where do we draw that line in the sand? I don't know.

Jessica Stover (13:54):
In thinking about that, Rosa, that is one of the most powerful things, honestly, I think I've ever heard. It makes me think of friends I've had in the past or even currently that have made some really dangerous decisions. There have been times where I and others would be involved in their lives, and we would do everything in our power to put the brakes on because we knew that choice that person was making, drug use or whatever it might have been, was going to kill them. We threw the brakes on and did everything in our power to stop it, because we knew they would die.
We knew it in our hearts and in our core. And so, we did absolutely everything from getting law enforcement to whatever. Why is that any different? It's that question that's an unanswerable question. Why is someone in my life who's making, let's say, not that's currently happening, but let's say someone who is actively using heroin, and I'm going to do everything in my power to try to get them to stop, help them seek treatment, whatever, because I know it's going to kill them, why would that be any different than others in my lives? Why do I treat one different than the other?

Tracy (15:15):
I just wanted to say, I think what's so disturbing about now, with COVID, is that a lot of folks are cut off from the people who are their voice of reason or who are their advocates. And just whether it's being a friend and being able to have closer contact with somebody who's having a drug abuse problem, you don't have as close contact with your friends or whoever right now. So people who are struggling or have... They don't have their advocates. They don't have other people having discussions with them about health and safety, perhaps, that they would normally have.

Jessica Stover (15:54):
I'm sitting here nodding my head, Tracy. Nodding my head.

Rosa McAllister (16:00):
Me too. Me too.

Jessica Stover (16:03):
The other thing that just came to mind, having people have their advocates around, but then we need to be supporting people to be their own advocates. And then are we really listening to people when they are advocating for what they want?

Michelle Sparling (16:15):
I just had seen an email earlier, which it just triggered to me that this popped up another layer to this. Aside from people with disabilities not being given full access to vaccine or be prioritized, this is a scary one too. There's research now, they're doing a survey on hesitancy and access challenges that people with disabilities are encountering. It's scary to think this is another privacy and a rights issue. How are people being coached in negative ways around access to the vaccine? They are not being given good information, whether it be the person themself, their family, whatever. It looks like they're now doing a survey to try to assess this and what's going on with it, because there are people saying, "I don't want the vaccine," just like there are, of course, in the general public. But are people getting the right information that they need? Where are they getting it from? There's that other layer. Are they being held back by people for other reasons that we're not even aware of at this point, or we could only speculate to? Yeah, there's a lot of concern.

Rosa McAllister (17:27):
And once again, these are age old problems. The issue... As you're talking, Michelle, I remember back, oh my goodness, conversations in the '80s and '90s with people who wanted to get married and were being told by folks, "You can't get married, or you'll lose your social security." Because it was, and I'm not sure if it's still the same way, but it used to be that if two people who were on SSI, for example, Social Security Supplemental, whatever that is, the disability related social security, if two people were on that and married, one of them would drop or would lose their financial stability. They would still receive medical, but they would not receive their money. They would lean on. They would only get the one. And again, I don't know if this has changed, but I remember being in so many, I don't even know that I can call them discussions, with couples who wanted to get married, full on marriage, and were being coached.
So it's that right information being given to people about anything so that they really can make informed choice. They can make true decisions that reflect their beliefs and their principles and their situations. That's true for senior citizens right now about the vaccine. I've been in a situation with a friend of mine who is horrified because she's here in Hawaii, and her mother who's in her 90s is on the mainland. The person nearest to her mother is another sister who is vehemently against any vaccines or any mask wearing or anything like that. My friend is very concerned. Her mother is being swayed by her other sister and her beliefs. So how do we get information to people? How do we... So that they can really make their own choices. It's the age old issue. I think we're just seeing it so heightened right now because of COVID.

Jessica Stover (19:22):
I'll ask the question, what can be done? Obviously, it's been brought up getting good information. But what else could be done? How can people be best supported or better supported? Information is very much key in all of this. How do we facilitate that information flow? We as friends, supporters, loved ones of others, what are some things that we can do?

Tracy (19:49):
Yes. I know that we have a number of elderly people in our family that my husband and I support, take care of. They've been hearing conflicting bits of information. We have shared our actions and why we're doing the things that we're doing and not telling them that they have to do it this way. But we're just saying, "This is what we are doing. This is how we are taking precautions. It's up to you. If you want to go out, that's up to you. We'll support you in that. But this is what we are doing." It's because you have other family members who were saying opposite things.
A couple other people mentioned that earlier, having two of the person's children given two different scenarios, and that's what's happening in my family right now. It's two different scenarios and no masks, no vaccine versus, "Yes, we're wearing masks. Yes, we're getting vaccinated. Yes, when we come over, we're wearing a mask. No, we're not going to stay." And that thing. So this is how we're dealing with it and trying to give as much information as we can. And ultimately, they have to make the choice of who you're going to see and how they're going to handle it.

Jessica Stover (21:10):
Other thoughts on this?

Rosa McAllister (21:12):
I was hesitant, this is Rose again, I was hesitant to bring this up. But I am starting to see, and I'm not suggesting that this is a good idea or a bad idea or anything, but as as often happens, I am starting to see the beginnings of what sounds like some potential legal actions on behalf of some folks whose rights, it appears, have been violated by this situation, and that they have been kept from family. They've been some pretty... There's one or two situations that I know of that are pretty severe situations where people have made, and I'm sure for all the right reasons of caring and protection and safety and everything else, have made decisions that others are viewing as violating rights. The person themself who is being so-called protected and supported has been having horrible emotional, physical, and other reactions to these stipulations and protocols, etc, that have been "put upon the person", including hospitalizations for trying to harm themselves.
I think we're going to see some of that. Again, I'm not suggesting that's the right thing to do or anything, but I think this is going to raise up this very question that we're talking about here, this issue. I think we're going to start seeing it in some legal situations as well, where it's believed that people's rights haven't violated.

Tracy (22:43):
I think, especially, if they haven't been able to be a part of weighing the risks. Because there's risks, the one type of behavior versus another, and we all weigh the risks ourselves to decide what we're going to do. If somebody is dictating which risks they need to attend to, then that's really not fair.

Jessica Stover (23:02):
This is Jess again. Have there been any, either continuing on with this, or I'm going to shift a little bit, your choice. Have there been situations or events that you've been involved with in the past where this topic, privacy and rights, has come up and there's been a successful navigation through the woods, for lack of a better metaphor, but there's been a successful navigation to the other side where people were having their voices heard and they weren't previously having their rights upheld? Are there situations you could think of, and just obviously generally, you can share them, that might be helpful in this conversation to frame it even further?

Rosa McAllister (23:49):
I can think of several. Several come to mind. As I mentioned a couple of situations where people wanted to get married, I can think of one situation in particular where this couple were adamant. They wanted to get married. It was not just, "I want to wear a white dress, and I want to be in a church, and I want to have a party afterwards." It wasn't just that, although that was part of it. But it was, "I want to be Mrs. So and So. I want to have people know that we're married, and we can be married." It was in one situation, I remember very strongly, it was the question of social security benefits. But it was also a couple family members that were against it thinking, "You don't need to do that. You could just have... We'll just have a party. You can wear a white dress, and he can wear a tuxedo."
It was really what a couple of us did was help us all remember back if we had had weddings, why we had weddings. Why we did that. Where if it wasn't that, if we went to college, and we got a degree, why we did that. What was the real importance of it? What was the meat of it? The reason why. Helping people get into their own head in their own situations and either remembering back or thinking forward really helped. Another situation I can think of it was helping people. All of us around this person remember times that others had spoken for us and decided things for us, whether it was my mother insisting that I looked great in pink, even though I hated pink, scarred me even to this day. But I'm teasing. But if it was something silly like that or something really, really important, but each of us remembering and putting ourselves in that perspective and thinking about how important privacy and how important rights are and how individualized those decisions are, I think that sometimes can help. Not always, but sometimes.

Michelle Sparling (25:55):
I had been in a wedding of a friend who became two friends who happened to have disabilities. The whole wedding celebration and the family perspective on wanting... The bride's parents and the groom's parents wanting their adult children now to have a wedding like everybody else. It was sad that they had to take a look at the benefits and what that would mean. But they decided as two families coming together that they were going to support their son and their daughter in making it work. And they did, and it was a wonderful wedding. It's what everyone... People who want to have weddings like you said, Rosa, what is it about it? What do you want? They had what they wanted. It was wonderful. It's a great memory. I just need to see it happen more often.

Jessica Stover (26:41):
It's beautiful, Michelle. This is Jess, again. I was lucky enough to get to know a gentleman and his team. He very much, very, very much more than anything wanted a job. He wanted to get out of the sheltered workshop, and he wanted a job. His family was so very much against it. He so very much didn't want to be a "problem" for them. He wanted to please them. He wanted to do the right thing, but he so very much privately amongst several of us when the family wasn't around would tell us unprovoked or whatever that word is, I'm trying, it's not coming to mind, but he would come out himself and say, and just say it, "I really want a job. I really want to leave this place where I'm at and get a job." But when then we would have that time to all of us together as a team to support him, the question would come up.
He would fall back into the "No, no, no. Everything's fine. I don't want to leave." I can remember one of the last times I was with the whole group together, it came up very gently. The question was posed, and prior to getting together, we prepped him, "We're going to be talking about if you're okay with it, this notion that you want to work, and your family's going to be there. Are you okay to talk about it?" He was hesitant, but he's like, "Yeah, I really think I do." The topic came up, and he just shrunk. He just shrunk in his chair, and his head dropped. His shoulders dropped. He kept looking around the room, and he was looking at his family members and the concern on their face.
One by one, he made eye contact with everyone. All of us were just looking at him and nodding, trying to give him encouragement to say what he wanted to say. And very gradually, he got very much taller. He lifted his head, and you just saw the shift and change in him. It was very subtle, but he summoned all the courage. It really was a lot of courage that he had to summon, because he was just so scared. And he said, "I want to work. I want a job. I want to leave this place." It was the first time he ever said it in front of his family and just the look of fear on his face. But he said it, and you could tell he was so proud of himself. He said it, and the family voiced their concerns, but then we talked about it.
What ended up was the family had a very different notion of what getting a job for him was. They had thought, "He's just going to be left to his own devices on a street corner, no support. He'll get a job at McDonald's. He'll have to get there on his own. He's going to have to fly solo on all this, never having done this before." When the team heard this, they were able to take those fears away in that there would be support, and we're going to get a plan. We're going to get a plan that works for him, for his comfort and for his needs. All of a sudden, it was the, "Well, heck why didn't you help him get a job years ago? Oh my gosh." That's a moment that's always really going to stick with me, just to watch that whole thing unfold and for him to really, like I said, gain the strength to speak his mind and have his words to truly be heard. It was a really powerful moment.

Tracy (30:02):
Jess, that brings up another privacy issue that to me, is that a lot of individuals with disabilities don't seem to have the privacy that other individuals do their own age, other adult. And that because their parents are so involved, whether power of attorney or whatever, but parents are constantly in the know and adult children don't have that privacy from their parents that maybe other adult children do. There are things about my life I would've not want my parents to know. But sometimes people with disabilities, their parents get to know everything. They're told everything. And so, that brings up another issue with me is what does a caring family member have the right to know? Or can they have their own little private things that are just to them and not shared with family?

Shauna Roman (30:51):
Yeah. I can recall, this is Shauna, many years ago being a part of many teams in previous work that I've done supporting people with disabilities and having really interesting conversations about this. Tracy, you're bringing them up for me now, these memories of people who wanted to keep things private from mom. Mom would come to a team meeting, and there would be some delicate topics. And I would think, "Yeah, I wouldn't want my mom to know this about me either." Some of it just was very common sensical, like of course, let's find a way to keep this private. But then you walk a weird line sometimes of wanting to maintain someone's privacy and not finding yourself in a situation where you would have to manufacture the truth with mom. "Oh no, mom. That's not what that was," when in fact, it was.
I can recall being on the periphery of situations like that where people sometimes really do want to do the right thing and protect someone's rights or privacy about certain matters. But when you have other involved family members or parents, etc, who feel that perhaps they have a right to know everything, those can be really tricky lines. I'm not saying that's an excuse to backtrack on the promise of giving people a real life with privacy, but it makes it more difficult to achieve.

Rosa McAllister (32:16):
Absolutely. And again, I think probably all of us have been in similar situations where we're maybe the middle man or the person trying to help others see that, and help the person speak up. Not speak for them, but help them speak for themselves. It's really hard. It's really, really hard. I would like to think that these issues will fade away a little bit with more young folks being included in situations and not as excluded, not as seen as so special if you will, an air quote, but I guess that's my hope. I'm not sure if that's reality or not. Just knowing and seeing more, and I'm just going to say, younger parents with kids with disabilities these days seem to be, I'll say it, better about just helping their kids have more of an everyday life and not segregating them or protecting them as much. Maybe it's a generational thing, and maybe we'll see it fade away a little bit with family members as well as with agencies. I don't know. I guess that's my hope.

Jessica Stover (33:27):
This is such an excellent topic. We could go on forever. The next each generation, maybe it'll get better. Those of us with a historical view, maybe we can see that.

Eva (33:42):
Hi everyone. My name is Eva. I wanted to comment. I think that was a good point about how privacy can be restricted given certain situations. I'm a person with a disability, and we receive home care services. I find it to be very difficult to be comfortable talking about certain things, like if I'm having a phone conversation or just anything, privacy is very, very, very limited. And I'm actually a very private person. So that I have to share things that I wouldn't necessarily share with other people, but because I need the care, it's not something I can necessarily avoid, if that makes sense.

Jessica Stover (34:29):
It does. Thank you. Thank you. And thank you for sharing.

Rosa McAllister (34:34):
Yeah. Oh my goodness, Eva. This is Rosa, again. I was cringing as you were talking and thinking, "Yeah, I can't imagine." I can imagine. I've certainly been in circumstances myself where I felt like, "That's not your story to share. Why are you..." Whatever. But my guess is not as much as you have been, and I'm very sorry. I remember there was one person helping them, right there going back to what, Jess, you talked about earlier, with their own protocols or their own... I'm actually remembering a couple people we named different things. One person there was Rosa's Bible kind of thing. Another one is, you want to work with me? This is what you got to do and not do with somebody else's. That was Mark.
There were a couple different people that I remember saying to them, "If you had to write down the rules for everybody, what would it be?" And they did really fast, no surprise. And then it was asking them, "Do you want to share this with people? How do you want to share this? Do you want help with this? What do you want to do with this? Or did it just feel good to write it?" I wonder. I don't know if that would help, Eva, at all.

Eva (35:45):
Yeah. Something that I definitely just wrote down because it sounds, I don't know if it'll work either, but it sounds like something definitely to attempt and try. I'm open to a lot of things. You reminded me too, even in the hospital if you're having not receiving good care from the people, but you want to make a call to family or something to tell them the situation, you could be limited there too. It's just so many situations that until you brought up this topic, and I think about proxy actually all the time, but until you all each made those comments, I didn't even think about all the different kinds of situations where people privacy and their rights of privacy has been really restricted.

Rosa McAllister (36:32):
I bet. The other thing that I would say to you, we're a training organization, so you got to understand I'm going to always go to that. But maybe make your own video. Make your own podcast, and share it with others. I don't know if you have a Facebook page or Instagram or something like that. More and more people are putting some of their stuff out. It's funny because talking about privacy, but it's almost breaching their own privacy, but in their own way and sharing what you want to share and getting the word out and letting other people... I'm just thinking, so what if you did an Instagram video or something and talked about this a little bit as much as you wanted to do? What if you got 200 hits and then brought that to the attention of some folks? Just say, "Hey, I don't know if you guys know. I did this, and look at the support I'm getting. Can we talk about this?" Would that be a way to help bridge that? I wonder. That might not be your thing at all, but I'm just-

Eva (37:30):
It's not. I'm totally not on social media. I never, anytime anyone give any suggestion, even if it's not my normal, never throw it away or anything. I actually try to do it, master that courage, like so many others before me have done and attempt to do.

Rosa McAllister (37:52):
Good for you. Good for you. I tend to throw some things away when people say stuff. We're here for you, with whatever that... We hear you loud and clear.

Jessica Stover (38:03):
Yeah, this is Jess. Rosie, you just hit on the nail. We hear you. I think people want to be heard and their voices honored and respected. I think that's, a lot of this for me, that's what it boils down to. People want and need and have to be heard. The thought that just popped in my head and various ways all of us here today may have been involved within the various systems and areas people are supported. There's files and files and files and binders and binders and binders, for some people, 10 miles high. What is written in there? Was that with their consent? Do they want this stuff documented and written in there? Is it necessary? Is it... How many people end up reading that and then even misconstruing it? Do we truly have to know everything that we feel we have to know as a system, I guess? I'm going to take it broader, as a system. Do we really need to know all of this stuff?

Tracy (39:03):
Jess, I think about sometimes doing consults and how sometimes I get more information than what I want to know. Because sometimes I prefer to not have any information and meet people and draw my own conclusion and see where people are rather than seeing where other people think they are.

Rosa McAllister (39:19):
Throughout this whole conversation, I keep thinking of my good old buddy. Some of you knew Maria. I've heard many of the stories. Maria taught me so much over the years, and this is a huge, huge topic. Just this whole conversation, I'm just seeing Maria tapping me on the shoulders saying, "Tell my story. Tell my story." I'm not going to tell the whole thing, but Maria was someone who really pushed people's buttons. People struggled with how to support her, because she didn't come lightly into this world. She was pretty outspoken, pretty demonstrative, and she was an extraordinarily loving being. But she had a tough outer edge, and she came to it in a right way because of what she was dealt, the cards she was dealt growing up and all of that stuff, and a lot of it by the system, by people trying to mean well and take care of her who really messed her up.
In her later years, through a group of us who were her friends and a couple rekindled family members, Maria left the system. She wanted to know what was in the big black books about her. In fact, it wasn't just one book or two. There were file cabinets full of stuff about her, and she wanted to know what was in there. Part of it was helping her see the files which, I got to tell you, was a whole big deal. "Is she allowed to see her own files?" Were some of the questions asked. She ultimately made some real decisions similar to what we've talked about here that even her closest friends and family members weren't sure that these were great decisions. It was scary for all of us, but she made it after weighing it. These were part of her lifelong hopes and dreams.
We helped her have a file burning party. She ultimately left the system, and again, some people thought that we were heretics. We were terrible people. We were going to harm her. It was going to be on our heads. But we helped her literally tear up and burn some of her files in a bonfire. She officially left the system, left the security of the system, the funding, other stuff like that, and went to live with a family member. She was not in good health, and she died. To this day, I have not one shred of guilt about that. Not one shred whatsoever that maybe I helped her, her ultimate demise or anything like that. Instead, I have this image of Maria in one of her final days where she was smiling broadly for what she had accomplished. She had become her own true person. She really had.

Jessica Stover (42:04):
Goodness. Thanks, Rosa. Those are incredible stories that have been shared today. And of course, heartbreaking and gut wrenching too, because clearly there's so much more work to do. There's so many more people to hear and to support to be heard and to think differently about how we can support people to have their privacy upheld, to have their rights upheld and all the nuanced pieces and the difficult pieces that go along with that. I think at the end of the day, we all become better people for wrestling with it, but just about this topic in general, just being able to have these conversations is huge.
And certainly, I think I'll say it, a step in the right direction or in the continued direction. Eva shared in the chat, "Thanks for sharing Maria's story, Ms. Rosa. Love she took her power back, and she was able to be her own decision maker." Isn't that true? My goodness. Rosa responded back with a heart emoji. I'm looking at the time, and I think we'll be wrapping up here. But before we go, are there any closing thoughts or any last things for right now that anyone would like to share?

Shauna Roman (43:25):
I'll just add, this is Shauna, that one size does not fit all. We don't have all the answers, but I think it's worth it for us to continue upholding what's right and helping people to fulfill their dreams and make their own decision. As difficult as it is, it's worth it.

Jessica Stover (43:43):
Certainly is. Eva shared, "Please do another Think-A-Thon on this topic because it is a fluid topic, important topic. And as Ms. Shauna said, one size does not fit all and would love to continue to brainstorm again." Thank you so much, Eva. I don't think this conversation's going to end, for sure. I think that certainly, I think we're all open to continue to talking about this. We'll certainly keep you posted. I'm going to wrap up and thank you all so much for joining in for being a part of this. This was an incredibly rich to discussion and hope to see you all soon in the future. Take care. Thanks everybody.

Speaker 1 (44:25):
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