 Marge Berthold, and this is Lindsay Owens, disability rights Vermont organization. Please introduce yourself and your work. My name is Lindsay Owens and I am the executive director of disability rights Vermont and I am also an attorney. Explain what your organization does. Disability rights Vermont is the protection and advocacy agency for the state of Vermont so we are federally mandated to investigate abuse and neglect and serious rights violations for people with disabilities throughout the state. Okay, so can I start with the questions? I think that would be great. Okay. It is necessary. I'm going to read it and then it'll be, you know, sort of as a question. Okay. It is necessary for my salvation, survival and preservation that I do not keep repeating myself and explaining over and over what is harmful and not working in Vermont mental health systems to providers, service agencies, and other people I must interact with as consumers of Vermont mental health system of what more can be done about misunderstandings that are not being corrected. I'm adding some. Okay. Thank you for letting me know you added some. So what more can be done and it sounded like the concern is having to repeat yourself to all of these different organizations and service providers. I think one thing that's helpful for me is to put things in writing and that way if you have something in writing that's the plan or the concern you can refer back to that at a later time and that's another way to also make sure that people are on the same page. Another way is to make sure that after you've told somebody your concerns is to have them repeat it back to you so you know that they understand what your concerns are and the issues that you're having. I think it's also helpful to try to come up with next steps and a goal. So when you share concerns what is it that you want to see change and really identifying that specifically so that you can hold people accountable. But then also what you are doing that is helpful to continue to do like if you know there are some things that are helpful that you are doing continue to do it. Sure. Absolutely. That's definitely true. Some people in the community think people as your label rather than a whole person. Most people are helpful and think of you as a person. What does disability rights do about this and what more can be done? So that's a really important issue Marge. One thing that we do as a staff is that we try to make sure that we learn about the people that we're serving and we get to know them and maybe they have other identities that are helpful to how we work with them and how we serve them. For example maybe somebody is LGBTQIA or BIPOC and it's important to know that people have several different identities and you have to look at somebody as a whole person. As an organization disability rights Vermont does a lot of training around disability etiquette and using person first language so it's putting the person first rather than the disability. And so we do trainings for service providers and other organizations around those types of issues to make sure that people are being respected and treated as individuals. That's also a lot of the work that we do in our investigations and complaints is that typically if an issue arises it's because assumptions have been made and people aren't treated as an individual but there's been assumptions made about that particular type of disability and sometimes that leads to adverse treatment of that person. And so we we try to work on those complaints and investigations in a way that starts to break down that issue around treating people as a label. So I wanted us to move not to stay too long on any one so we get through. I have experienced several thousand billion million misunderstandings that I need to be relieved of. The help that I have from the disability rights giving me the survival and how do you understand this is one of the most important parts of work you do Vermont mental health system misunderstandings and beyond. So it is absolutely one of the most important things that we do disability rights Vermont is to listen to you and to listen to other individuals in the community to get a real sense of where there are areas for improvement or where there are concerns and it's critical that we have conversations with you and with other people in the community to make sure that we know what's important and what needs to be addressed. And I'm losing hope for the billion misunderstandings in Vermont systems and beyond to be resolved. I have hope with yours and others help would like to comment how necessary survival help can happen more and basically doing continuing what is helpful and even more doing even more what is helpful. That's my comment. What comment do you have? Well first Marge's I hope you don't lose hope. I know that it can be frustrating at times and it can be easy to feel hopeless when things don't change quickly or over a really long period of time but I think staying hopeful and just trying to reflect on and look at the steps that this the mental health system or that you have taken specifically pay attention to the steps that you are making and and not looking at the mountain that's left to climb and just you know taking things one day at a time but big change takes time and that's definitely something that disability rights Vermont is working on currently. Okay I have overextended myself over and over to take responsibility for hundreds of misunderstandings in Vermont systems well and I'm also adding and also beyond and I don't want this to be just up to me surely up to me I want to make it clear that I do not want this responsibility I can't do it it's too much it's it will miserably fail just up to me it will and since and since there is some help it's not just up to me but there needs to be more help and it's an enormous responsibility and I don't want it it's not healthy disability rights Vermont's help it's necessary and very helpful the help I have from you and others is helping my survival what can you do to keep this help helpful and keep happening? Well for starters I think that I will continue to support you and our work together and continue our conversations and I'll work with our organization will work with anyone who feels like they could benefit from DRBT services disability rights Vermont and what about what you're doing that is helpful that you know you've agreed to do and is helpful and then my ideas for more things you could do to be helpful because I'm saying that yeah and I'm always open to hear new ideas about how to improve the mental health system we are and what about what you already are doing that's helpful that you've agreed to do you know I'm saying I'm just explaining how much I needed that and so I'm trying to make that point about how much I need that absolutely and I just want to go back to you feeling like this is all on your shoulders because it really isn't I want to assure you that disability rights Vermont and other organizations either should take some responsibility in helping improve the mental health system or their organizations that really want to create the change that you want as well and so disability rights Vermont is very committed to collaborating with other groups like the disability law project but I'm saying but this is a personal thing for me and the things you're doing to help me you know they'll still can help well help other people but still it needs to help me to and be good for me too and so what I'm saying is what you're doing to help me I'm mentioning that yeah and I apologize if I wasn't more clear but I'll continue to help you and I know that we've had some conversations and you've needed help on a specific task and I've agreed to follow up with different organizations or different people in your community and in your network to help resolve your concerns and I think that's been working pretty well and and and and and what about and mentioning the concerns at the meetings absolutely I would continue to let our board know what your concerns are and my staff will continue to be aware of what your needs are and what your concerns are and we will work together to work on the mental health system and um because I and because I feel like there's some and what and and then when you said something about uh working towards a message for Narpa oh yes that was something that we talked about very briefly and if that's something you would like to do then I'm happy to work with you on that I would like to do that because see I don't think I can go and I've explained the barriers and I also don't think the people will understand about why I can't go or how why it's so hard to go and that you'd like to go but I can't because it's so hard it's too hard to travel and uh because of risk of breaking bones and as you get older and then the stress everything I got very sick from what I went through from this stress and so and um and and and and and it's so hard it's too hard after everything I've gone through and everything I've suffered and after all and so I wanted to make so how will we make the a message for it to get there well when we have our next regular check-in we can start working on what you'd like to say so that your voice can be heard and and then and then but how will it be brought I haven't figured that out yet Marge but we will I know that there are members of my board um and my staff who will probably be going and I just need to do more research to see how we would get that get your statement out there but would would they but how would but would they take it I would hope so but I can't say for certain what other people will do um but we'll work on it we can absolutely work on that um okay okay um I think so that's that's that's that's good because I just you know I'm just trying to you know I just um you know I'm trying you know I'm just uh you know because I mean I found that I you know I really found that was helpful going there but but you know I'd finding travel too hard and I you know I don't know if other some you know I even like travel but you know it's like I find it too hard and then and then and then I got very sick from stress and and a lot of things are much harder to do after a traumatic experience very you know and and and and for a long time I was I was stuck in a situation stress was too much that you know it wasn't healthy and um and it's it's much healthier and less because there's less stress but it's uh still I uh it's I'm wanting things not to be so hard you know uh if things were you know uh I mean you want life to be I'm 70 now and you want life to be more enjoy you want well I mean I have enjoyable times but you know you want it to be much better uh and not so hard you know as I get older because you know I don't need some of these things that have happened in the Vermont mental health system and and different things in my life I haven't needed well I think you're doing the right thing then and you're really valuing yourself and your own care over maybe going to a conference that might be difficult to do so I think that sounds like the right decision for you and you know um it sounds like there is a lot of stress so I just want to make sure that you remember the importance of you know self-care and taking care of yourself and it sounds like um taking some of this off of your plate and letting disability rights Burma and others kind of work on the on improving the mental health system would be helpful for you and would be the way to go and also I'm at risk for falling right and that's scary and I have fallen broken bones I dislocated uh left shoulder 100% and then and then when I had this this uh broke a finger that I told them for months and and then finally after months they gave an x-ray they said it's all healed there's nothing we can do but I don't think there's much they can do for a finger is there oh geez I'm not a doctor I don't know what they would what can be done for a broken finger and then that was in 2014 and then 2011 when they when I had chest pains from stress it didn't stop they see me Nika Grislin I went to the uh the hospital and they said uh it uh they don't didn't know if it was a stroke uh but if if so it wasn't permanently damaged um it would have been a small stroke they had me uh stay overnight in the hospital and then they said the next day I could go I was taking I said you know at the time you know that was in 2011 I was taking 25 micrograms of thyroid then because the thyroid wasn't working properly then they said they went to 50 micrograms and then last year in 2021 in um July they said it went to 75 micrograms of thyroid because it wasn't working properly without a thyroid medicine um and uh you know I think you think stress probably affects all of that probably oh absolutely stress contributes to so many physical health problems it's really important to try and monitor how you're how you're feeling and how you're doing because it absolutely impacts the rest of your health um and uh uh and and and and and she um and and do you think emotional suffering affects it absolutely and uh traumatic traumatic experiences definitely yes uh I I I was wondering how much more time do we have left because I don't want to I want to be able to finish if we start something okay what do you want to do to help get you what do you need to get to get your job done and continue to be helpful what do you need for for for your job what do I need for my job um practically uh we need two staff attorneys we're a little short staffed at the moment um for me personally to get my job done I could use another day of the week um but just kidding I know that that's not possible um you know I think just having mutual understandings about people needing more time to get things done I need to really carve out some time but you know this conversation is really great and I'm very thankful that you invited me here today to talk with you and so just communication I think is key and that's the way that I get my job done is to make sure that I'm talking with everyone that I need to be talking with um to start to address issues um I wanted to say that see Narpa is it different places uh each year I mean it's it sometimes it's at some of the same places but then some of the same places it isn't and because I've gone to many of them before and I just I don't know if that answers your question I mean you asked me about about where about where it was does that answer it yes that answer is it I know that it's um I know where it is this year right no I'm just um explaining um I know uh Susan Stefan told me it was going to be in West Virginia um they changed it I believe it's in Newark New Jersey oh they changed it yeah they must have I'm I just I saw it online well okay they must have changed it uh you know I'm saying that you know I'm I mean anyway um for whatever reason I guess you know that you know yeah I'm not sure I'm not sure what happened but I believe that it's in New Jersey this year well I I could name um a lot of different places I went to but um I guess that's not necessary or I mean I've gone to a lot of places but I mean I don't think that's necessary for you to understand about it being in a different place each year um no thank you I understand thank you for letting us do this it's really helpful to get this message out to the public and um thank you very much and thank you Lindsay for coming and doing this um and thank you channel 17 and Megan for helping us and thank you March for inviting me and Ashley and Theo oh and Ashley and Thea and Theo Theo oh Theo and and what about the whole I know but what about the whole channel 17 or whatever you're called it's what you could say thank you to the whole town meeting TV okay thank you for it to the whole town meeting tv uh for because I I mean you're all part of helping have this happen aren't you yes I mean don't you want to give credit to everyone all right thank you March yep thank you