Guardianship: What are the Alternatives and What Role Does IL Play

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But you know, here we go. we're gonna start the recording and that would be like it never happened, Thank you all for hanging out with us.


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Alright. so, Karen, you should begin to go.


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Alright, thank you so much, since here, if you could advance that to the next slide, please. Yes, folks.


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So what you see on the screen today is a message.


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It is a message in red ink that says please Don't murder me, and this is a page from a journal that A gentleman named David Italiano, had shared with the center for independent living here and roads to freedom so


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what i'd like to do is just kind of tell everybody the story of David.


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David was a 69 year old man, who in January of 2020, reached out to roads to freedom.


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He had heard that roads to freedom assisted people that were in long-term care facilities.


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I won't really I don't like using the term nursing home because there's nothing homeish about them.


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But David was in a long term care, facility here in like coming county, and he had met some other residents at this facility.


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Who told David, Hey, we're working with this place called road to freedom, and they help people get out of long-term care facilities.


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So David, in January of 2020 called our agency, and he spoke with our intake specialist, and explain that he was here in like coming county at a facility called for risk to care, and that he really wasn't sure why he was


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there that he owned a home in Huntington County, Pennsylvania, and that was about over 2 h from where David had come from to get to like Homing County.


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David owned a home, and he really wanted to go back to his home.


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He was very confused as to why he was there. so our initial process, of course, is to share a release of information with that person who's seeking our services.


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So our intake staff, you know, explain to him that they would mail email release of information.


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David provided the name of his social worker staff contacted the facility, got an email address, and in january of 2,020 cents a release of information for David to complete, and we didn't hear back from David for probably


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about 3, 4 weeks, and we again got a call from Dave and Dave indicated.


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He was still waiting for this release of information, so that we could begin providing new services.


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This went on for about the first 6 months we would send a copy to the facility.


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David said he was never shown the document. We would fax a copy to the facility.


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We had snail mailed it, so it was provided to the facility in 3 alternate ways, yet they never received it.


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So as the advocacy coordinator I was contacted in June of 2020, and the intake Staff said, Look, there's just something horribly wrong here.


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This man calls us We're Sending information he's not getting this information, so I reached out to the facility in June and asked to speak to Mr.


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Italiano. I was full that I could not speak to Mr.


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Italiano that all communication regarding him needed to go through the facility administrator woman named Bobby Joe Thompson.


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So I called and left several voice messages for Ms.


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Thompson asked that she called me back. Explain that one of the residents at the facility was interested in transitioning, and in order to begin this process, we needed to share documents.


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After a few weeks got a phone call from Wisconsin.


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Miss Thomson was not very kind. Miss Thompson explained that she is the one making decisions there with David, and that if we want to have any contact with David, we needed to contact his guardian.


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Now we had already been in touch with david's Guardian David's guardian.


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At this time was a gentleman's name Mr. Jim Malay Jim had explained to us, as David did.


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You know, when we asked Dave, how did you end up in like coming county, you know?


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Tell us your story. So David explained that he had been injured by his wife.


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There had been in investigation. Adult protective services was called, and David ended up having a same day.


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Search will procedure at Hershey Medical Center, and Dave explained that when he came out of recovery and he was getting ready to be discharged from the facility, he was handed a telephone and on the phone


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was a woman, Mary Beth Swan. Miss Swan introduced herself as a staff from the area agency on aging from Huntington County, and she explained to David that David, we need to protect you.


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We need to protect you from a family member who is abused you So therefore we're removing you from your home, and we're going to send you over 2 h away to live in a long term.


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Care facility. So it was very, very odd to us that Dave had to go so far.


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But anyway, we reach out to the Guardian at the time, and Mr.


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Lee when we explained who we were and what services we provided to folks.


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He was very excited about this. His His words were you know i've wondered, for quite some time why Mr.


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Italiano is in this facility to begin with, and Mr.


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Lee had also shared with us that the facility was questioning David's need to be there.


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David was very independent. He needed no physical assistance to complete activities of daily living.


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He was mobile. he had minimal health concerns, and he took a multi vitamin and a medication for blunt pressure. And that was it.


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So we finally get Mr. Malay to reach out to the facility, and Mr.


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Lee explains that he has signed the release of information to allow us to talk about getting services to David. Mr.


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Malay was so concerned about David's placement being incorrect there, that Mr.


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Malay petitioned the Huntington County Court, He petitioned for Judge George Zanick to review David's status as a person deemed incompetent, and did not feel that this was correct.


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Mr. Malay went to the extent to reach out to an independent consultant, to have a new neuro psychological evaluation performer.


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So in May, of 2,020 this evaluation was performed, and the results of the evaluation indicated that David did not need to have a guardian that Dr.


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Tulac felt that David was competent. So we all agree that that was a great thing that we're gonna you know. petition the court, and we're gonna get this review revised when I first spoke with David one of the things


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I said to David that I regretted to this day was David. You know it's really This is not an unusual situation.


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We assist people to return to independent living, to live in the community.


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If that is their desire. We do this on a regular, basis. you know there's some paperwork it's a little bit of a process, but I was pretty confident, you know, telling Dave. hey?


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You could maybe even be home by Christmas. Oh, my! how those words failed!


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David. so in November of one teach 20 data goes with staff from the facility to Huntington County, because, as I said, Mr.


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Malays petitioned the court to have a new hearing and at this hearing. Mr. Malay indicates that he doesn't feel he's inappropriate guardian, because he knows that David is eventually returning home to Huntington


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county, and Mr. Lee felt that it would be better if David had a guardian in Huntington County, because that's where David would be living.


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That's where his home was that's where dave wanted to be So at this hearing in november 2021 Judge Zanick at that point provides temporary guardianship to the Huntington county area


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agency on aging, and it was very interesting, because this is when things began to sour greatly.


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As I said, prior to the high for the the sake of acronyms, I'm going to use the term the triplea.


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It had nothing to do with the automotive club folks, but referring to the agency on aging. so the triple A immediately contacted our CEO at our facility, Mrdon and inform misty that they were the guardians


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and that, you know we really didn't need to interfere we had explained on several occasions.


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David had explained to his social worker and to the facility Administrator Ms.


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Thompson. He wanted to return home to Huntington County, and he wanted to have home and community based services.


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This did not please the facility there. Were times when Miss Thompson, she called. the facility asked to Speak to my supervisor basically said to my supervisor, Look You know you've got to get somebody else in here


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Karen's difficult to work with she's demanding you know. Basically, it was like kind of call your dogs off.


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Misty. explain to Miss Thomson that Misty had no other appetite to send, and then she would talk to Karen.


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She would talk to me about my approach, and we would go forward from there.


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Meanwhile David is very concerned about conversations with the facility staff. David Doesn't trust the social worker.


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He does not trust the administrator, and he is not very comfortable with the information he is being given by his court appointed attorney, a gentleman named Mr.


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Ray gayer from Huntington David called one day, and he was very panicky, and he said, Look, I have to have meeting, he said, and it's gonna be via zoom keep in mind folks like I said this is 2,020


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and the pandemic is raging through nursing homes, so there's no direct contact.


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David knew nothing about what a Zoom meeting was. I explained to David what it was that it was a virtual meeting, and David asked if I could please join him myself or another advocate for roots to freedom because he was just


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suspicious of conversations he had previously had with the facility staff and a social worker.


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So I contacted a social worker, and I made that request, and David reiterated that request and said, Yes, please share the link with roads to freedom, so that I can have an additional person on my side.


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For this call we were told that the link would be shared, and about 3 h later the day of the meeting, David called, and he was very upset because there was no one from Roads to freedom there to advocate for him to give him some


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support. We explain to David that no one ever gave us the link that we had no way of accessing the meeting, because the facility did not share the information.


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And what went on from their folks is gradually just, you know, up a downwards file or spiral.


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For David civil rights. we had a facility who was forbidding us to visit him.


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We had contacted staff that worked at the facility. and knew that they were using a chat box to allow other residents to have guests today with families friends and advocates.


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So we began reaching out for support, our initial contact was with the Likelihood County on Budsman's office and contacted the onbudsman and explain. Hey, David's having a hard time getting in advocate


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involved. and basically what we were told was there's a guardian involved in this situation, and the guardian is making the choice that you know David David Doesn't need this additional support.


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We were determined to offer this service, to David because the one We're we're federally funded to provide transition services to people, and for number 2. David was continuing to call our facility.


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It was very difficult to call back to dave because again he's in this facility.


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He's sharing a room with 3 other people sometimes phones weren't available.


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So conversations in contact with David was very, very challenging.


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We finally, after working with the Ombudsman, explained that David wanted to have guests.


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Others were having gas. Please facilitate this, and in October of 2,020 we finally got the opportunity to meet David face to face, and one of the things that charm me the most about David when misty and I met with him that day


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David's concern as we were leaving was he said I need a favor, and it's very important, and you know when we ask, Well, what can we do for you?


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And he reached inside his jacket and he pulled out his mail and ballot.


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He didn't trust the facility to mail in his electoral ballot. so he asked that we would do that, and he also had a journal that he kept and again.


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That's where. please don't murder me comes from and David didn't trust the facility staff. He felt that they might look in his journal, so he asked Staff to please take that journal, and at a later time we would return this journal to


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him. David gave us verbal permission, and in writing David indicated his provider of choice.


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To transition would be roads to freedom and there you go we're gonna move forward, or so we thought we reached out to David's support coordinator.


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David was enrolled in community health choices and asked the support coordinator, hey?


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We'd like to talk to you about putting together a care plan David would like to do this.


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We were told, can't talk to you there's a guardian So what continues to happen?


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Folks is just again David's rights being stripped out from under him.


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Every opportunity cost in December of 2020


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Because again, the pandemic is raging. 70% of the deaths in Pennsylvania occurred in congregate facilities.


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We felt it would be in david's best interest to get him some kind of communication.


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So we spoke to David about having a cell phone. David was thrilled at the option to have a cell phone.


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He wouldn't have to wait in line to get phone calls.


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He would be able to have greater independence, and he could have access to information.


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So we made arrangements to take a phone to David, and the day that David got his phone I was in my office and my co-worker across the hall.


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A gentleman named Jay Jay was talking to David, and you know David received the package, and Jay had put a note in there, explaining how to turn the phone on, and within like an hour or an hour and a half jay and David


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are now texting each other. david's picking up on this technology pretty quickly.


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David was very, very happy during this conversation with jay a social worker came into David's room, and David was having problems getting the windows to close on the cell phone.


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You know the app windows. So Jay said to David, Will. Maybe this person that came in could help you, and he overheard David say, Hey, did you show me how to close these windows?


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So. So when the social worker saw the phone saw the device, and she was more than happy to help David.


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But when she realized that the device had come from the assistive technology resource center that is operated out of roads to freedom she immediately, told David. You cannot have this, she asked. David.


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What else did they give? You wanted to see the package?


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Look through the package to see if there were any other contents in it.


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Well, David that she wanted the charger, and and stole David personal property.


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And this was all overheard on the phone. so David called our agency later that day from the landline, and he explained that he went down the hall.


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He saw his social worker, Alicia, take the phone into the administrator's office, and David's words in his dream, described the social worker like a dog taking her kill into her master to be rewarded for It it was


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the next day. I believe that the CEO it roads to freedom, received a phone call from Miss Thompson.


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The facility administrator. Miss Thompson said that there was a court order for roads to freedom to have no contact with Mr.


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Italiano that there would be no written communication, no verbal communication, and that we could come and pick up our phone.


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This did not sit well with David or any of us, and in the meantime we have been giving David referrals to many, many different places.


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We provided David with a referral to disability rights, Pennsylvania.


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David was working there with an attorney named Rich Ping.


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David will tell Rich the same things that he was telling roads to freedom.


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I want to get out of this facility. I want roads to freedom.


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How Meanwhile, David's Guardian the area agency on aging the triple A is calling roads to freedom and telling us you are harassing David.


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David becomes very angry after you fall. David does not want any contact with you, so we would immediately reach back out to disability rights, to confirm, to have them Contact, David, and lo and behold, what they were saying was not truthful David did want


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to continue to work with us. So the hearing in which the Triple A was appointed the guardian


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At that time the judge or Janic he could not determine.


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If David was still competent or not, so we asked for an extension.


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Meanwhile David was very concerned. What kind of evidence had the facility used?


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Or had his guardian used to show that David needed to have a guardian, and that David was incompetent and not capable of making choices.


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So David immediately went to his social worker. This was on December first of 2020, and he asked, as a person with or without a guardian, has a right?


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He asked to see his medical records. David was told not to worry about it.


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It really didn't matter and David, continued to self advocate and say, I want this information.


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So, after 2 weeks of asking a social worker to provide him this information, David reached out to me and asked for our assistance.


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We reached out to the local Ombudsman and said, Will you please facilitate this?


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So i'll make the story short folks it wasn't until about Hmm.


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8 weeks after David have requested this information. By this time the judge has rolled into January of 2021, he says, No, David is still in competent.


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And now the triple A is a permanent guardian there, not just temporary.


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They are guarding if david's finances david's state if it's body.


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And David did not have those records that were basically used against him.


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It wasn't until our CEO Misty Deion escalated this to the State office of to to Margaret Barahas. Margaret serves as the State long term Care Hans Budsman through the area of


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aging. It was not until it was escalated there that David was given the records that he had requested back in December.


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Unfortunately like I said, it was too late. The judge had already ruled


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So David is feeling incredibly defeated. Rows to freedom, again tries to assist David with a device


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Working with an organization called Adapt Aggress Routes Advocacy Group


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2 members from that group went to the facility in february of 2021 to provide David with a cell phone. And again, we're still not allowed to just come and go from the facility because of the


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pandemic. So David came out and kind of met staff at the lobby area.


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David couldn't go outside the building because he had a bracelet on an ankle bracelet, much like someone that was in prison, would have on them to monitor their location.


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They were that fearful of David, leaving so David couldn't mad at the facility.


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The The advocate from adapt got the phone to David.


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There were facility staff that witnessed the interaction, and they called the State Police and the Pennsylvania State Police came to the facility.


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The 2 adapt advocates explained that the facility has stolen David's phone.


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The gift have been given to David, and they had taken it.


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The facility that encountered, and said that this gentleman is under a guardianship, and that the Guardian forbid contact with us.


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And again, this court order is mentioned that has yet to be seen saying that roads to freedom is not permitted to have contact with David and the police officer, as we've seen in guardianship cases explained that this was not a


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criminal matter. but this was something simple. so therefore he had no obligation to respond, and would do nothing about it other than tell the advocates from adapt to leave the facility.


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Or you will be arrested. So the advocates left, and this was on January twentieth, and excuse me.


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On February twentieth, and that was the last day I heard from David.


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David called the facility, or called our office that day, left a laugh, a joke, and said that huh!


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I think they busted us again. He was appreciative of our attempt to get him the phone.


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But could not happen. so we again go into this you know we're frustrated.


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So on that Monday I call David I call david's room again.


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He's sharing a room with other people not one person answers the phone.


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This goes on for 4 days i'm getting very concerned because at this point.


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We've had contact with David daley you know we have worked with as many advocacy groups as we could to try and get David some support.


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We had file complaints with both State and Federal offices of civil rights.


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We had reached out on several occasions to the Guardian, and asked, Please help us facilitate this care plan meeting for David.


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We would be happy to assist with this the facility responded to us that no, they couldn't do that, because there was a conflict of interest.


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So we asked them to explain this conflict, and and they indicated that roads to freedom could not help David because they were providing services, and that this would just be a conflict, and we explain to them that their services were provided at the State level that we


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were used. You know we were federally funded to provide the service, and that there was no conflict of interest.


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Now, I say, there was no conflict. of interest there really was but it wasn't with our service the triple a the area agency on aging.


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Okay, So they're david's guardian they're david's, you know, making medical decisions for David They're making decisions about David's home.


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You know, David, on the home had a couple of vehicles, and they are also the same entity that serves as the umbudsman.


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So if David complained and said that my rights are being you know my rights, I'm, not.


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I don't have any civil rights my rights have been script for me.


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Nobody will help me with this. and if adult protective services was contacted, lo and behold!


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Guess who the investigating entity would be. It would be the triple A.


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So. Yes, there was clearly a conflict of interest. so David is whisked away from my coming county. In February, of 2021.


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We found this out, we confirmed it when another individual that lived at this facility that we were actively transitioning, made a comment and said, Wow, I hope you guys can get me out as quickly as You did.


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David. He was here one day and go on the next, so we continue to try to work with the Guardian.


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We have frequent calls with the this Margaret Baras, the umbudsman through the State.


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We have actually a meeting with Secretary Robert Forres, of the office of aging, and Mr. Torres.


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I will know who serves as a guardian himself said that it really wasn't up to him that there was a guardian in place, and that he couldn't force the guardian to honor David's request to have a care


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plan meeting to look at some person center planning and to recognize that David wanted to go home.


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So in May of 2021, a group of advocates for adapt took a trip to Huntington County, and we went to the area agency on aging, and we said, Look, we get it.


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You have the power you've got to power you're the Guardian.


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But we've not heard from David and months. could you please just call him and allow us to hear his voice.


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We wanna know that he's Okay, who were told nope that is not going to happen.


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You need to leave. The advocates refused to leave the building, and the local police enforcement were called to come in, and the advocates explain to the police why we were there, and we asked the officers if they could pass the staff


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at the tripaa to please just call David let this police officer. know that David's okay.


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The guardian said, No, they would not recognize the police officers request, and again we were told to leave, or we would be charged with press.


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Passing We did receive letters about a week later, telling us letters from the so solicitor for the triple A that


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We were never ever to step on any of their premises. again, or we would be arrested for press passing and back to this conflict of interesting I may have failed to mention that Judge George Zanick, the Judge that ruled on


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David's competency prior to being appointed judge in Huntington County, served as the solicitor for the area agency on aging for Huntington County.


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So again that, you know, smells like conflict in the air.


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We reached out to these Federal office of civil rights. we filed complaints there.


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We were told that they could not investigate unless we had assigned release from the individual.


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We explained that we had no contact with the individual because he had been abducted by his guardian, and therefore we could not provide that information.


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We continue to reach out and work with some amazing civil rights.


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Attorneys, and and we contacted the guardian and said, Hey, look!


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You know we need you to sign this and we want permission to advocate on David's behalf to file this complaint with the office of civil rights.


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So the Guardian did go. contact David and David greed and signed the release. So that was shared, and we were hopeful that the Civil Rights Investigation would lead to you know, indicating that there's abuse going on in Huntington


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county, and that David's rights, that David was in this fraudulent guardianship, We believed that there was Medicaid fraud going on at the facility that David was not eligible, for that stay at the


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facility. but anyway, David is whisked away. So a few advocates and some staff got together and did a little bit of investigating, and to tell that David was being housed now in a facility called the Shirley home.


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It was a personal care. Home operated in Huntington County, and in February of this year staff from the Pennsylvania Council on independent living and the CEO from roads to freedom traveled to the Shirley


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home, and lo and behold! were able to see David even though Staff were wearing mask.


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And David had not seen these staff in in the staff in a year and a half.


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He immediately recognized them, and was just quite blown away that somebody was still out there on his side.


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David agreed verbally to have a recording made of that conversation that day with staff from roads to freedom and the Pennsylvania Council for independent living, and David expressed again his desire to return home to the house that


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he still owned he wasn't sure if his house had been sold or not.


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He had little communication with his attorney, and he wanted our help.


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We have again reached out to the guardian and every single door that we opened.


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They're on the other side. You might as well have a sign that, said David, has a guardian leave. There was absolutely no level of cooperation.


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There was no one willing to say this individual, even though he has a guardian.


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He still maintains rights in Pennsylvania.


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Yeah, guardianship is done differently from state. to state so when I'm talking about things in Pennsylvania, it may not be the same experience in other areas.


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But David has a right to communicate with people. David had a right to, you know, be involved in his care, planning.


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They even had a right to access a phone. When Staff met with David at the Shirley home in February, he was not permitted to meet privately with them.


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There was someone monitoring the conversation at all times so that's a little bit about David Italiano, and please don't murder me.


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So. so, Sierra if you could advance to the next slide, you know if there's anybody out there right now who thinks this can't even be possible?


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How in this day and age, could a guardian course an individual instantaneous into an institution?


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We have osted legislation that protects those rights.


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We have the Aba that says that people need to be offered an inclusive environment and the least restrictive environment.


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So what you owe. If you could go back one, please, Sierra, what do you see on the slide?


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There was a fax that was sent from the area agency.


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On aging the the facility and folks Basically, it reinforces the fact that there is to be no contact with roads to freedom, that there would be no contact whatsoever, and that the services that David would be receiving that David


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wanted to be receiving would be provided by the Triplea, and any communication should go to his court appointed attorney.


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Mr. Regainer. next slide, Please, Sierra, I will add that the roads to Freedom staff did reach out to Mr.


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Gainer and attempt to talk to Mr. Gainer. Mr.


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Gainer made it very clear that he had never heard of the center for independent living, and became very sarcastic with our CEO and Aster.


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You know. Are you an attorney? as as misty, was trying to explain to Mr.


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Gainer about forming community-based services that David could live in the community, and if he even needs services, we had seen nothing indicating that he did need home care.


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But that if he did, we would be happy to assist David to get enrolled with the independent enrollment program and get those services out in the community.


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This did not happen, Mr. Gainer basically refused to communicate with us.


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So that's a little bit on David italiano and one of the things that was brought to our attention You know.


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Why does David need to have a bargain that's That's always my first question when someone says I have a guardian?


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Why, what we were told by Mr. Gainer and by the guardian was that David was right for the picking; that they believed that David could easily be influenced.


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By others and potentially be financially exploited One of the things that is important for people to understand is that that's not a valid reason for a guardian, you know, guardianship is not a tool that can fix things like


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somebody eloping from a so facility. somebody who has some challenging behavior.


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Somebody who may be destructive maybe has committed criminal activity.


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Somebody who displays aggression. having a guardian is not going to cure or fix those things.


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Maybe somebody makes really bad choices and social relationships know everybody that ever made a bad choice about a relationship had a guardian.


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I'd be willing to say that a good part of our country would be under guardian ship.


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Guardianship, then, is not a solution to somebody who chooses to self neglect somebody who maybe doesn't want to take their medication, or somebody who, you know, doesn't necessarily want to follow recommendations that were given to them and all


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people persons with the disability person without a disability.


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We have a right to make bad choices. next slide, please.


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Here.


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Can wrong i'm gonna hand it over to you sir, thank you Karen.


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Well, I can say is, Wow! you did a great job of describing a situation for David.


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No! David is obviously not the most egregious.


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The worst case possible of what happens to people when they have G guardians.


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But let me get into some of my thoughts about what happened with David, and what happens around the country, and why we're doing what we are doing.


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Which is for the past. I would say at least a year, probably a year and a half.


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We've been having weekly meetings on fridays and our group keeps expanding.


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We keep doing strategy. We try to figure out how we can.


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Interrupt this confinement of David this obstruction of his rights.


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And we're. gonna keep working on it he's still in incarcerated in a home healthcare facility, which is a ridiculous.


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So let me talk first about who I am and How I got into this and what we're trying to do.


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As I said before i'm an elder i'm older than David, and that means that I potentially just as everyone that's on this call could be subject to a guardian.


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And what is that mean? That means that you will have all your rights taken away from you.


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A little while ago I wrote an article for mad in America, and if you don't know what madden America is, look it up on the website.


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They do a marvelous job combining the stories of professionals, and also people who have been incarcerated in some way or another could be in cycle social disability.


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It could be in prison. it could be you what we're doing in terms of guardianship.


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One of the things in the article I wrote I started off with a quote from a well known comedian who said, You think you have rights?


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You don't have rights. you have privileges rights are supposed to be something that you have that cannot be taken away from you.


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But they're really privileges that we do have I in terms of my story.


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I was in incarcerated and psychiatric hospital for 6 months.


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When I was 22 years old I was diagnosed with schizophrenia, and then


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I was really after about 7 months I had shock treatment.


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I lost my memory. When I recovered. 3 years later I was hospitalized again and diagnosed with schizophrenia chronic type.


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I was told i'd have to be on drugs for the rest of my life.


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Probably wouldn't be able to work and i'd be in out of hospitals.


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Not true. 2 years after that second hospitalization I went on to graduate study, and I received my doctorate in psychology. I'm.


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Now a license psychologist who works on these kinds of issues with rights.


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Now one of the things that I did when I was working for under contract with the Department of Mental Health in the State of New York.


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I was the liaison to the State Independent Living Center for the Department of Mental Health.


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This was about 15 years ago, and one of the things that was clearly noticeable is that the independent living centers that were in New York at that particular time didn't know how to deal with cyclosocial disabilities


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really I had a a personal mission that I believe that all disabilities needed to work together in order to attain their rights and have their their freedom.


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So jumping ahead. This is 15 years later that when Covid struck there was an option to band together with all disabilities, because there was one mission that was really important that we shared, and that was to get people out of


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institutions into the community with the proper supports. Most people can live in community.


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So around that time I was executive director of mine.


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Freedom International, and we had a program called Shield which I'll explain later that we worked with Karen and Roach to freedom on the issue of getting David into back into his own home. and


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This has been properly a year, and a half or so that we've been working together and sharing a common charge, and that is to emphasize people's freedoms and what they need you know just to sustain that


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one of the things I thought of i'm not really good at following powerpoints.


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So you have to allow me to riff off of some different things. And one of the things that Karen's talk reminded me of is a concept that was developed by a psychologist well known named Martin Seludman


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probably about 30 years ago, and it was called Learned Helplessness.


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And that applies to what happens when somebody gets a guardian.


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As long as you have your needs taken care of you kind of lapse into dependency.


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Along with that there is the issue of isolation that happens.


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The later on, in this particular webinar karen I Karen and I will talk about alternatives to guardianship, and what we can actually do.


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I'll also explain the shield concept which is what we do what we have done.


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Continue to do with my freedom to respond to complaints that People have who are institutionalized or forced to take drugs against their will, or they're being monitored.


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And they lose their rights. The shield is something that we do to support people who have been isolated alone, and don't have any control of their lives. I'm.


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Looking at the Powerpoint and I think we can go on to the next one.


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Please. thank you. The dignity of risk is a concept that came out of the developmental disability community.


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Originally it's a strangely important unless a person is allowed the opportunity to fall down.


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It'll never grow the idea of protecting people from everything hi!


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E guardianship ie. institutions is something that prevents the growth.


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There's a something that I think is very applicable It was written by a sociologist by the name Edward Hall, and he said one of the most devastating things that can happen to a person is them is for them to


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be prevented from developing the potential that they do have.


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So the dignity of risk really talks about that issue, and that kind of morphs into the I.


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The idea of guardianship protection whether a person is incarcerated currently The United Nations has a program where they're analyzing institutionalization around the world, and I had opportunity to speak for 3 min


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in one of the back finding things. And one of the things I thought about when I spoke was 95% 90 to 95% of people with psychosocial disabilities are treated the way maybe 5% need to


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be be treated so. One other thing before I read simple han too much is we need to really examine the whole concept of competency.


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I've been working in the field with people who are considered psychotic that had no ability to make the decisions, and I've always found that people do have the ability to make decisions regardless of what shape they're in the only


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I Personally, I believe the person has to be in a comba that they don't have some degree of lucidity.


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There was a psychiatrist named Ed, part of all that to find a concept called Isles of clarity, that in the midst of complete disorganization there's always some aisles of clarity and in terms


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of competency. Does a person have absolutely no competency or do they have the ability to choose?


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Let's say what kind of serial they have and they want for breakfast, you know.


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Suppose they like cocoa puffs and it's not you know necessarily a healthy serial.


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Should we decide that for them, you can go on to next slide, please.


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You wanna cover this karen or or ron yeah you know as we've told this story so many times and like, I said earlier, people just you know they'll say, Well, wait a minute.


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This person has a right to, you know, seek a modification to request a termination, and they have a right to have an attorney.


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They have a right to a grievance in court, and if the guardianship is limited, you know there are still some rights that they would maintain.


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And that also guardians are required to promote self-determination, and the guardians must make the decisions that they believe that person excuse me that they believe that person would make for their own best interests.


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So I i've had people say well this is just impossible this really can't happen, and i've tried to explain to people.


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It's one thing to like ground said is it a right no it's a privilege, it's one thing to say you have this right, but if nobody is enforcing these rights.


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The rights have no value. Next slide, please. In some States, you know, folks, you you maintain that right to Mary.


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There are some States where a guardian can say no


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We maintain that right to vote. Now, one of the things I find really interesting.


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If you have property like David. David had a couple of vehicles, and David had a home in Huntington County.


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Guardian, you know, dwelling and guardian. They must choose the least respective dwelling.


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They must notify the Court of moves, and whether the adult objected. They can't move to a place where restrictions on leaving or having visitors. are present.


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Guardians can surrender a person's lease without a court order, and a notice of a right to object.


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So what we've seen here is a guardian a judge and a court appointed attorney that all have this conflict of interest the relationship.


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And yeah, when that guardian goes in and says we would like to sell Mr.


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Caliano's house? it's probably a pretty good odd that the judge is not going to say No.


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Why would they sell Mr. italiano's property in order to pay for his care?


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Like I said We're we're pretty sure that it was medicaid fraud that was occurring when David was in the long term care Facility and folks may not realize but for every dollar you know those medicaid


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beds. There are beds in these facilities designated for folks receiving that benefit, and for every $1 that the county is putting out for that cost.


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There is money back from the feds $2 so there's an incentive for the county today, and some money and there's a great incentive for the legal entities that are assisting David to exploit him


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financially. I I remember laughing out loud when I read that David was, you know, he could be exploited financially, and that's why he needed a guardian.


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What would be more accurate was that his guardian was the one that was exploiting him.


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Next slide, please. So, decision making Ron, let me ask you a couple of questions.


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Are you a financial expert? If you had, you know, some serious financial questions.


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Maybe you inherited some money. Maybe you have this lump sum of money.


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Would you just go willingly, or would you reach out maybe wrong to your friends?


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Maybe someone who's kind of knows more about it than you and ask for some input.


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What do you think I would do? as long as I wasn't forced to do it with the specific person that I didn't know, and I didn't trust, and I hadn't done some investigation and talked to people I knew you know


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there's this idea. When we talk about alternatives to guardianship, one of the things is supportive decision making. and when we look at decisions, I mean, some of these could be pretty big decisions. financial decisions, healthcare education, career life, plans.


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Do I get married? Do I relocate no one myself run, or any of you out there listening to this or watching this?


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Was born with this innate ability to make choices, you know, kind of going back to what Ron said.


347
00:52:06.515 --> 00:52:10.515
We can start small with making choices. What kind of serial do you want?


348
00:52:10.515 --> 00:52:15.515
What color shoes do you want? What color shirt are you going to wear today?


349
00:52:15.515 --> 00:52:20.515
That is how a person learns to make choices, and as like Ron said.


350
00:52:20.515 --> 00:52:28.515
When you eliminate that opportunity. it's very very difficult when you have a guardian that says well, we need to know that they can do this, and they can do that.


351
00:52:28.515 --> 00:52:33.515
But you're never given that person the opportunity to make a choice.


352
00:52:33.515 --> 00:52:44.515
So they there. they have no opportunity to develop those skills which so many people seem to think are so important that people always make really really really good choices.


353
00:52:44.515 --> 00:52:52.515
Next slide. please see era


354
00:52:52.515 --> 00:53:04.515
Let me let me take this for I Remember thinking as we've been working all along.


355
00:53:04.515 --> 00:53:10.515
This issue with David getting them into his own place. Why, is this going on?


356
00:53:10.515 --> 00:53:24.515
You know we've had shield alert where we had people calling the different people that were involved, writing letters


357
00:53:24.515 --> 00:53:33.515
No reason we wrote press releases. We didn't get real coverage in the not much coverage that was going on.


358
00:53:33.515 --> 00:53:50.515
We were not having the example of Britney shield so you know I thought about this, and during the adapt protest I remember thinking and saying they're just doing it because they can do it.


359
00:53:50.515 --> 00:53:53.515
And then some of you know Mike Oxford


360
00:53:53.515 --> 00:54:04.515
And he had said to me, you said, they're doing it because they don't want to open the floodgates of advocacy. And I I thought about that.


361
00:54:04.515 --> 00:54:22.515
Yeah, if we get David, how then, maybe it'll be an example. that other cells can work at getting people out that they can develop the shield program and be able to move people it's about power, and then I


362
00:54:22.515 --> 00:54:31.515
And it's also thinking how the biden administration just came out with the proposal of upgrading nursing homes.


363
00:54:31.515 --> 00:54:35.515
I'm thinking about yeah that's the right way to correct the problem.


364
00:54:35.515 --> 00:54:44.515
Have better nursing homes. And then I realized that nursing homes have become the darling of Wall Street.


365
00:54:44.515 --> 00:54:57.515
They were putting together these these groups that would by stock in nursing homes, and it became it's big business.


366
00:54:57.515 --> 00:55:14.515
So we know, you know and I think most of the people who we're on this call on this webinar for people that are informed, or they've been touched by what's happened by being put in an institution


367
00:55:14.515 --> 00:55:26.515
themselves having a family member being put in an institution, and the the notion of how bad this this is.


368
00:55:26.515 --> 00:55:31.515
I was really surprised because I had been going around to psychiatric hospitals.


369
00:55:31.515 --> 00:55:38.515
Reviewing them. I saw some awful places during the time i've been working in the field the privilege, or a few.


370
00:55:38.515 --> 00:55:50.515
The abuses, the lack of understanding and then I saw what was happening in nursing homes and guardianships across the country.


371
00:55:50.515 --> 00:56:08.515
It's really to me this is so important to everybody and I think it is us who have had lived experience in some way or another, either on our own or with family members, or with just a friend.


372
00:56:08.515 --> 00:56:22.515
We're just facing aging or perhaps you know the the unexpected auto accident, where we might become brain damaged.


373
00:56:22.515 --> 00:56:31.515
So don't we want of course we do we want to be able to make decisions.


374
00:56:31.515 --> 00:56:38.515
So you know, getting to the slide of less restrictive alternatives.


375
00:56:38.515 --> 00:56:48.515
Supported decision. Making is a good transition I believe it's much better than having a guardian, and we can go into if we have time.


376
00:56:48.515 --> 00:56:54.515
A little later supported decision, making is but you know it's pretty easy to do.


377
00:56:54.515 --> 00:57:16.515
A Google search and find out about it. Unfortunately, there are only 14 States now that have legislative supportive decision making, Although most States say that we should have in examination an investigation of the alternatives to guardianship guardianship should be


378
00:57:16.515 --> 00:57:26.515
the last choice, but it's not advanced health care directive interesting prospect.


379
00:57:26.515 --> 00:57:37.515
I worked on psychiatric advance directives. when I was going around to different psychiatric hospitals around 20 years ago, when I was working in New York.


380
00:57:37.515 --> 00:57:45.515
I'll give you an example of what's the problem with much of the things that we face.


381
00:57:45.515 --> 00:58:01.515
I was giving a talk. We had a pamphlet, psychiatric, advanced healthcare directives, and we were going myself and another colleague with going around psychiatric hospitals and introducing the


382
00:58:01.515 --> 00:58:08.515
concept, both to the in patients, to the staff, and in the middle of one of these talks at St.


383
00:58:08.515 --> 00:58:12.515
Lawrence Psychiatric Hospital on the Northern tip.


384
00:58:12.515 --> 00:58:29.515
New York. One of the people in the audience started waving the pamphlet at us, and it was all our joining us. He had it rolled up, and he was shaking his fist with the pamphlet and he was saying, what are you gonna do to


385
00:58:29.515 --> 00:58:34.515
me, and I was little dumbfounded I didn't understand it.


386
00:58:34.515 --> 00:58:41.515
Well, what he was saying is, what are you gonna do to me if I don't follow this?


387
00:58:41.515 --> 00:58:48.515
What consequence is it turned out? he was a psychiatrist on the backward of the hospital.


388
00:58:48.515 --> 00:58:53.515
At the end of the talk the hospital administrator came over to me.


389
00:58:53.515 --> 00:58:58.515
He said. I'm really sorry. you know he did that but he has such a tough job.


390
00:58:58.515 --> 00:59:09.515
He gets really excited because he works with the worst the most difficult patients on the backward, and I didn't say anything.


391
00:59:09.515 --> 00:59:22.515
But I thought to myself, Okay, you put some really emotionally hyperactive psychiatrist who's losing it himself on the backward to work with the most difficult patients.


392
00:59:22.515 --> 00:59:36.515
Anyway to my attention something that we were dealing with with psychiatric advanced directives, and that was there's no obligation to follow it.


393
00:59:36.515 --> 00:59:46.515
However, what we decided to do, and I think it can be an advantageous to people, and that was the person would do.


394
00:59:46.515 --> 01:00:06.515
The advanced directives at a time when they could be adjudicate, not adjudicated, but declared competent that they knew what they were doing, and they could have 2 people that they picked out that could witness it and attest to


395
01:00:06.515 --> 01:00:15.515
the fact that they were competent to do this the choices. They made. Some people were saying, it's better if you have an attorney.


396
01:00:15.515 --> 01:00:20.515
Do that or professional do that. We ran into difficulties with it also.


397
01:00:20.515 --> 01:00:30.515
So one of the things that we suggested to put on the advanced directives would be that you put out preferences at the end of it.


398
01:00:30.515 --> 01:00:51.515
For example, if I got excited, and I started to to feel how to control, or I appeared to be out of control to the staff in the hospital, that it would be good if I could be put in a private room with an unlocked


399
01:00:51.515 --> 01:00:56.515
door with some music that I chose, that I could listen, too.


400
01:00:56.515 --> 01:01:05.515
Were allowing me to walk and paste the hall, and carry on, and perhaps walk with a friend.


401
01:01:05.515 --> 01:01:27.515
Whatever seemed to work or in the preferences i've had how long the past has made me really a lot worse, and I, as on the basis of having this particular drug, I developed a systemic condition uncontrollable movements.


402
01:01:27.515 --> 01:01:32.515
muscles, some movement, disorder, if I need to be put on drugs.


403
01:01:32.515 --> 01:01:45.515
These are the drugs that i don't want to take These are the drugs that seem to be helpful, and i'd like them to be re-examined. A couple of weeks or a designated period of time after


404
01:01:45.515 --> 01:01:52.515
it started. So Pants psychiatric advance directives can be very helpful.


405
01:01:52.515 --> 01:02:03.515
The only problem with it is Well, there's a couple of them one is, they're not mandated that a person that the facility has to follow them.


406
01:02:03.515 --> 01:02:11.515
However, it gives you some leverage. If you do want to challenge something the facility is doing.


407
01:02:11.515 --> 01:02:20.515
One of the problems with psychiatric advanced develop directives is also the Ulysses


408
01:02:20.515 --> 01:02:26.515
What was called the Ulysses factor. for those of you who know something about Greek mythology.


409
01:02:26.515 --> 01:02:49.515
Ulysses when he was but his ship, and about to approach the sirens that would sing, and then trans people on the ship to to head into waters that were would with be dangerous.


410
01:02:49.515 --> 01:03:05.515
He said. You know time needs to bow with the ship. So so I could countermand the orders that I had given before we got into with the sirens, and that relates to psychiatric directives in the sense once a


411
01:03:05.515 --> 01:03:12.515
person makes a site yet to advance directive, they can change it at any time.


412
01:03:12.515 --> 01:03:23.515
So suppose the person decides to change it at the time when they were no longer competent. One of the problems, but they are helpful.


413
01:03:23.515 --> 01:03:39.515
It's a facility that really wants to do the right thing you want to take over power of the turning more. Ron: Thank you. Thank you for sharing and your your personal details as well Yeah, Powers of Attorney are very very simple


414
01:03:39.515 --> 01:03:42.515
i've had individuals come and say to me well, you know Gee!


415
01:03:42.515 --> 01:03:47.515
I can't do this, my mom is my power of attorney just to clarify it.


416
01:03:47.515 --> 01:03:53.515
When someone has a power to attorney what that says is that in the event that I come become incapacitated.


417
01:03:53.515 --> 01:04:04.515
Let's say i'm in an automobile accident today, and i'm unconscious I mean a homeless that is, when that power of attorney would be activated so you can designate things I know


418
01:04:04.515 --> 01:04:12.515
I have a friend of mine who makes really good choices the only thing he's not super skilled with is money, so he decided.


419
01:04:12.515 --> 01:04:19.515
You know what it would be a good idea that I designate my father and my brother to be a power of attorney for my finances.


420
01:04:19.515 --> 01:04:24.515
So that is very, very simple to do it doesn't require an attorney.


421
01:04:24.515 --> 01:04:29.515
It can be reversed, and you can specify a financial power of a tree.


422
01:04:29.515 --> 01:04:40.515
Perhaps it is medical decisions. Perhaps you're not but the person may not feel comfortable making their own medical choices, or maybe they just don't feel that they have the information to make a choice.


423
01:04:40.515 --> 01:04:46.515
So a power of attorney can be used, and it can be a really great tool to avoid guardianship.


424
01:04:46.515 --> 01:04:49.515
You know, one of the things when we talk about. David was okay.


425
01:04:49.515 --> 01:04:56.515
Guardian says he could be financially exploited, and I talked to David, and I was like, Well, you know something, Dave.


426
01:04:56.515 --> 01:05:09.515
You could have something like a representative payee where Okay, you have a person who, you know, social security is supportive of this that they're gonna receive David's monies and dave's gonna have a budget and they're gonna make sure that david's bills


427
01:05:09.515 --> 01:05:17.515
are paid, and that you know nobody can come in. And you, you know, sweet talk David, into giving up a debit card, or, you know, handing over all of his monies.


428
01:05:17.515 --> 01:05:25.515
So again, looking at the least restrictive tools to assist a person to be successful in the community.


429
01:05:25.515 --> 01:05:32.515
There are so many tools like I said, that still allow a person to have their rights.


430
01:05:32.515 --> 01:05:38.515
Still allow a person to make choices still empower a person to have their own identity.


431
01:05:38.515 --> 01:05:43.515
Yet those areas where they might need a little support. They have that support. next slide.


432
01:05:43.515 --> 01:05:48.515
Please share.


433
01:05:48.515 --> 01:05:55.515
Okay, what the heck is supportive decision making we've been talking about it, and we're gonna dive a little deeper.


434
01:05:55.515 --> 01:06:11.515
Now supportive decision making sometimes fall referred to as Sdm is a series of relationship practices, arrangements, and in agreements of more or less formality and intensity, designated to assist an individual with a disability to


435
01:06:11.515 --> 01:06:25.515
make and communicate to others decisions about their life and like We talked earlier, you know. I think they all in formally use supportive decision making if my car breaks down I'm gonna reach out to somebody who knows about vehicles


436
01:06:25.515 --> 01:06:28.515
and talk to them, and ask them to help me decide. What should I do?


437
01:06:28.515 --> 01:06:31.515
Should I replace the transmission, or should I just buy a new car?


438
01:06:31.515 --> 01:06:38.515
Supportive decision making can take many, many forms. It can be very informal now.


439
01:06:38.515 --> 01:06:41.515
One of the things that Ron had mentioned was 14 States.


440
01:06:41.515 --> 01:06:50.515
That record, recognize support of decision making That is a goal that you know More States do recognize this.


441
01:06:50.515 --> 01:06:55.515
It is often invisible because again it doesn't require a lawyer.


442
01:06:55.515 --> 01:07:03.515
There's no cost to the individual it would simply be as simple as saying, you know you're a friend of mine. You're a family member.


443
01:07:03.515 --> 01:07:07.515
You're someone that I trust that I would like to assist me with making decisions.


444
01:07:07.515 --> 01:07:13.515
And then you kind of write that down and who's going to and ultimately it is not just to assist to make those decisions.


445
01:07:13.515 --> 01:07:27.515
It's not a assisting to make the decision but it's educating It's making sure that that person who is going to make this choice understands consequences of the choices i've worked with many folks and i've said to


446
01:07:27.515 --> 01:07:38.515
them. You know i'm not gonna make this decision. for you It is up to you, but you need to understand, or it's important that you know that if you choose to do this if you choose to go to Atlantic city, and spend


447
01:07:38.515 --> 01:07:42.515
your $800, and then you don't have money to pay your rent.


448
01:07:42.515 --> 01:07:48.515
They're gonna be consequences of that so it's making sure that people are able to make an informed decision.


449
01:07:48.515 --> 01:07:57.515
That is really a key there. excuse me basically the person who's making this supportive decision making plan.


450
01:07:57.515 --> 01:08:08.515
They're gonna have a community of people that are around them and you know, at some point, if they want to change who is a part of their community, they have the right to do so.


451
01:08:08.515 --> 01:08:12.515
And it creates tools for people to get you know to be able to say no.


452
01:08:12.515 --> 01:08:23.515
If i'm a person with a disability and I have somebody who's, you know, coming to me and telling me you need this, or you need to that, or you know you can't smoke cigarettes it's not good


453
01:08:23.515 --> 01:08:32.515
for you I can remember years ago, seeing a staff in a group home smoking a cigarette, telling a resident who lived there that you can't smoke your doctors.


454
01:08:32.515 --> 01:08:40.515
Says you're not allowed to so it's like I said allowing people to identify supports that work for them.


455
01:08:40.515 --> 01:08:52.515
Again. Guardianship is costly Guardian ship, as we are seeing across Pennsylvania and across the nation, horribly difficult to reverse.


456
01:08:52.515 --> 01:08:56.515
So supportive decision making can be a very, very informal tool.


457
01:08:56.515 --> 01:09:01.515
They can assist that person and allow them to be successful in the community.


458
01:09:01.515 --> 01:09:07.515
Next slide, please. Sierra


459
01:09:07.515 --> 01:09:14.515
You know we're starting to run close on time and could you go to the next slide.


460
01:09:14.515 --> 01:09:21.515
I want to talk about Shield. Okay. I had mentioned Shield before.


461
01:09:21.515 --> 01:09:34.515
Before I get into shield, let me say that the psychiatric psychosocial disabilities is the largest disability.


462
01:09:34.515 --> 01:09:53.515
Silo. I recognize that in a meeting with Justin Dart when he said, We really this is going back sometime, where he really identified with people who had psychosocial disabilities, and felt if we could ever combine the 2


463
01:09:53.515 --> 01:10:06.515
groups working together, we have such common areas of interest like rights and personal freedom and proper treatment, that we would be a power more of a power to be reckoned with.


464
01:10:06.515 --> 01:10:11.515
So mind freedom, shield! This is a flow chart for it.


465
01:10:11.515 --> 01:10:23.515
And since I want to leave time to have questions at least respond to some of the questions that will be i'm gonna just summarize this really quickly.


466
01:10:23.515 --> 01:10:39.515
But on the the powerpoint it's more detailed what that is is at the office of mind freedom we receive, let's say, 7, 8 calls a week.


467
01:10:39.515 --> 01:10:57.515
About people that feel they're being mistreated in some way or in other, because they have a psychiatric diagnosis of severe mental illness, and their rights are being overlook denied.


468
01:10:57.515 --> 01:11:16.515
And what happens is, it might be one example which is common that we get is somebody's schedule for for electroshot treatment, which to put it mildly is controversial and questions memory lessons and and it's just a


469
01:11:16.515 --> 01:11:25.515
terrible and usually it's a family member who says you know that they they object to it.


470
01:11:25.515 --> 01:11:44.515
The person doesn't want it they're getting worse and working with so what happens is one of the staff we'll talk investment in the sense of trying to talk with the person themselves, because it's always central to the individual


471
01:11:44.515 --> 01:12:00.515
wanting this to get out because it's public what we're going to do in the last part when there's nothing else that we can do where we've contacted local advocates when we've contacted people that we


472
01:12:00.515 --> 01:12:12.515
might know from their protection and advocacy and nothing has changed. Then we do what's called the shield Alert, where we have about 400 people now, maybe a bit more.


473
01:12:12.515 --> 01:12:28.515
Right now who have signed up to advocate for this person who's looking to have their rights restored in the sense that they can make a choice that they don't want a kind of treatment like Electro shock or some drug


474
01:12:28.515 --> 01:12:43.515
that is making them feel like a zombie and what the people have signed up to do is to look at the narrative which is constructed by the person the family member.


475
01:12:43.515 --> 01:12:48.515
It's agreed upon the story of where they are why they're getting getting this treatment.


476
01:12:48.515 --> 01:13:07.515
What happened to them. and then there's a list made of the people involved the psychiatrist who's who's recommending the shock treatment the hospital administrator, local legislators, organizations, Whoever people can


477
01:13:07.515 --> 01:13:20.515
contact, and they'll be a template letter that the person could put it out for a phone call that would be made, and this would be essentially something that's done.


478
01:13:20.515 --> 01:13:31.515
So that the person isn't isolated that ring the complaint out to the light as opposed to being hidden.


479
01:13:31.515 --> 01:13:39.515
But you have no the person themselves. The patient has no ability to change anything.


480
01:13:39.515 --> 01:13:45.515
They can come all they want. but bringing this into the community makes it a subject.


481
01:13:45.515 --> 01:13:53.515
The discussion. Do they really want to do this? And I think with shock treatment.


482
01:13:53.515 --> 01:14:05.515
I can think of at least 3 or 4 times where the shock was stopped and they change the treatment play the amount of pressure that's put out by the community.


483
01:14:05.515 --> 01:14:22.515
Unfortunately with David, we've put out 3 shock alerts we've contacted people who written letters there's There's not been really a response, and i've been somewhat surprised because generally you went into psychic psycho


484
01:14:22.515 --> 01:14:41.515
social issue that we have been able to get resources so so I think this is a method that could be adapted to who, where the person is, whether it's guardian, Whether it's a kind of treatment that a person I don't


485
01:14:41.515 --> 01:14:48.515
want and you might want to flash Sarah on on the


486
01:14:48.515 --> 01:14:56.515
The powerpoints coming up with with shield cause there's some more detailed explanation of it can be moving forward.


487
01:14:56.515 --> 01:15:09.515
Thank you and i'm sure anybody who's on the call gonna get access to this, and it's it's really not a complicated procedure.


488
01:15:09.515 --> 01:15:16.515
The most complicating part is having it the narrative of the person's story.


489
01:15:16.515 --> 01:15:23.515
What's happening, and having them agreed to it because this is a permanent record.


490
01:15:23.515 --> 01:15:32.515
Once something out on the Internet. it it's pretty hard to be removed if it can be.


491
01:15:32.515 --> 01:15:41.515
We did do one anonymously in Connecticut with the help of a public interest.


492
01:15:41.515 --> 01:15:58.515
Lawyer and It was successful there was also, an article written in the newspaper about it, but interestingly enough. The feedback we got from the person who was a 20 year old, and he didn't want to be known in the


493
01:15:58.515 --> 01:16:03.515
community as somebody who was in a psychiatric hospital for his future.


494
01:16:03.515 --> 01:16:12.515
So we did it anonymously. However, he complained that staff had threatened him, and said that if you continue doing this, we're gonna put it.


495
01:16:12.515 --> 01:16:17.515
Yeah, everybody's gonna know that you've been in the meeting in the hospital.


496
01:16:17.515 --> 01:16:30.515
So much for Hipaa. huh? ron yeah yeah, I think we've got just like a minute or 2 yet before we get to questions wrong. .


497
01:16:30.515 --> 01:16:46.515
I'm sure left out a lot of information This is something that my goal and I think Karen is, and many of the people on our committees who are working with David.


498
01:16:46.515 --> 01:16:56.515
Is, we want to establish a broad group coalition, and we want to start addressing these issues nationally with guardianship.


499
01:16:56.515 --> 01:17:03.515
You know whether you have the money or the status of Britain, and shield, or your unknown person, your subject.


500
01:17:03.515 --> 01:17:14.515
Same violations written. The did not have the option of consulting another attorney because she didn't know she could.


501
01:17:14.515 --> 01:17:23.515
She was prevented from getting married. I all sorts of things that are no different than the person who doesn't have money or thing.


502
01:17:23.515 --> 01:17:41.515
It's incredibly corrupt. system because a lot of make people are making money, you know, whether it's from the state where it's Medicaid, and probably should say this but you know my feelings is it's a


503
01:17:41.515 --> 01:17:51.515
boot third rate lawyers. we to have a career accumulate wealth.


504
01:17:51.515 --> 01:18:08.515
Nick. Exactly. just a a quick thing for folks some of the other actions that we have taken our group in addition to seer, which is another organization that helps combat fraudulent guardianships and that's


505
01:18:08.515 --> 01:18:18.515
C. E. A. R. We have petitioned, filed Amicus briefs with the Pennsylvania State Supreme Court to request that David Status be reviewed.


506
01:18:18.515 --> 01:18:33.515
Those were declined. we we like I had mentioned we had reached out, and we had filed civil rights complaints with the Federal office, and what we have been told recently is that there will be some technical assistance provided to the


507
01:18:33.515 --> 01:18:43.515
guardian, so we're not quite sure exactly what that Looks like yet, you know we're on and I were talking the other day, and we said, Wow, this would be a really great presentation wrong at the end.


508
01:18:43.515 --> 01:18:50.515
If we could introduce David to everybody. but unfortunately we don't have that access to David yet.


509
01:18:50.515 --> 01:18:59.515
But we will get there. We will definitely get there. And, Sierra, are there questions in for folks there are there?


510
01:18:59.515 --> 01:19:04.515
There have been a couple of dropped in I think you've covered this one a bit, but you might want to just go over all our time.


511
01:19:04.515 --> 01:19:12.515
Just what all are the alternatives to guardianship? like the in specifics to David.


512
01:19:12.515 --> 01:19:23.515
What? what options did he have, or they? Yeah, I guess the least restrictive alternatives is kind of what you were diving into.


513
01:19:23.515 --> 01:19:28.515
Yes, and the least restrictive alternative for David would be to live in his home in the community.


514
01:19:28.515 --> 01:19:41.515
And again, if you needed some kind of support to complete activities of daily living, or you know the the services that he was receiving in a long-term care, facility, he could enroll in the State waiver program in community health choices and have


515
01:19:41.515 --> 01:19:46.515
those in his home. The the big problem is is that judges are quick to rush.


516
01:19:46.515 --> 01:20:00.515
Do guardianship directly. it appears that not a lot of people are looking at anything that is less invasive, and I encourage folks, you know, if they're not familiar with the Olmsted decision Google the own stead


517
01:20:00.515 --> 01:20:07.515
decision. That is a great piece of legislation. That set is that you know you cannot force a person into a restrictive environment.


518
01:20:07.515 --> 01:20:12.515
If they can be successful and safe in a least restrictive environment.


519
01:20:12.515 --> 01:20:25.515
And we are not, seeing that what we would like people to take away from today's presentation are 3 elements there's an element where we need to educate a judicial system you know, as we started working with ron and mine


520
01:20:25.515 --> 01:20:28.515
freedom and seer and other groups. We are now getting calls.


521
01:20:28.515 --> 01:20:32.515
I received a letter from a family in Bucks County, Mr.


522
01:20:32.515 --> 01:20:46.515
Robert Harper, whose mother similar experience was abducted by a triple, a taken out of his home for no valid reason, and forced into an institution where she was essentially euthanized.


523
01:20:46.515 --> 01:20:50.515
We shared this story we had another gentleman from Huntington County reach out to us.


524
01:20:50.515 --> 01:20:56.515
Talk about his mother. I have a rouse. a woman who one day the State police and the area agency.


525
01:20:56.515 --> 01:21:00.515
On aging of Huntington County, knocked on his door, and said, Your mother is coming with us.


526
01:21:00.515 --> 01:21:04.515
What do you mean? Well, it was determined that this house is not safe now.


527
01:21:04.515 --> 01:21:08.515
What is interesting was, there had never been any inspection of the house.


528
01:21:08.515 --> 01:21:13.515
There had never been anyone from the Triple A come to the home to see.


529
01:21:13.515 --> 01:21:23.515
Is she safe? So judges and or people making these legal decisions, need to understand that there are less restrictive options out there.


530
01:21:23.515 --> 01:21:27.515
Family members of persons with disabilities need to understand.


531
01:21:27.515 --> 01:21:31.515
I have a co-worker who has a teenage son with autism.


532
01:21:31.515 --> 01:21:35.515
At a transition meeting at school. Everybody there, you know, the experts.


533
01:21:35.515 --> 01:21:38.515
The professionals quote unquote are saying well you know he's 15.


534
01:21:38.515 --> 01:21:44.515
You are gonna petition for guardianship soon, Right? You want to make sure when he turns 18.


535
01:21:44.515 --> 01:21:47.515
And they were kind of horrified when she said, What?


536
01:21:47.515 --> 01:21:57.515
Why would I want that. it's really easy to get a guardian To To have a guardian ship reversed is nearly impossible.


537
01:21:57.515 --> 01:22:03.515
So it is everybody's role if you're working in an independent living community.


538
01:22:03.515 --> 01:22:09.515
You're supporting independent living, you work at a cell you know Don't take that hate there's a guardian.


539
01:22:09.515 --> 01:22:16.515
Stand back. Get away! No, that's not okay when when That's the first thing that you're told is there's a guardian, Mind your own business.


540
01:22:16.515 --> 01:22:23.515
That should be the first flag that goes up that says something isn't right here. and this person's rights are not being recognized.


541
01:22:23.515 --> 01:22:27.515
Okay, let me. let me just say up something, Sarah.


542
01:22:27.515 --> 01:22:41.515
One of the things. If you look around where you live if you'll find that elderly people who need assistance generally get the systems.


543
01:22:41.515 --> 01:22:58.515
And there are a number of families who don't have guardianship, even though from the time they're down syndrome child is born they're encouraged to put that person in a guardianship.


544
01:22:58.515 --> 01:23:04.515
What we need to do advocates. We need to develop systems.


545
01:23:04.515 --> 01:23:17.515
I think the sales are ideally the ideal for developing systems that can work with people that are less restrictive and guardianships.


546
01:23:17.515 --> 01:23:33.515
There needs to. These are all and antiquated systems where you put people in these congregate livings, centers where they get just a complete lack of freedom to make choices.


547
01:23:33.515 --> 01:23:42.515
Of course there are people that need more intense care but we need to develop systems that don't require


548
01:23:42.515 --> 01:23:55.515
I'm sure where I I would bet that most of the people on this call have seen or been inside institutions, whether they nursing homes or some kind of group facilities.


549
01:23:55.515 --> 01:24:01.515
And it's We can do much better than that you know we're doing the same thing.


550
01:24:01.515 --> 01:24:11.515
We have done, and sales are charged with bringing people back into community.


551
01:24:11.515 --> 01:24:16.515
Thank you for that. We had 2 more questions. One was


552
01:24:16.515 --> 01:24:22.515
What does boon toggle mean? You mentioned it up in Douglas for a third rate lawyer?


553
01:24:22.515 --> 01:24:27.515
I don't hearing that but it's.


554
01:24:27.515 --> 01:24:37.515
But it's basic way. that you use the word Karen, because I don't really.


555
01:24:37.515 --> 01:24:41.515
I think that would be a free for all kind of just kind of Anything goes.


556
01:24:41.515 --> 01:24:51.515
Nobody's watching. Nobody cares what i'm gonna do so i'm just gonna get get getting taped as much as I can, and .


557
01:24:51.515 --> 01:24:54.515
Somebody. Somebody has thrown baskets of money out the window.


558
01:24:54.515 --> 01:24:58.515
Just grab it. You don't need to do anything to get it it's free money.


559
01:24:58.515 --> 01:25:08.515
It's easy. and then there was one more I think we're on this is when you were sharing your story a bit


560
01:25:08.515 --> 01:25:16.515
Can you elaborate? on saying it quoted, quote, incarcerated regarding psychiatric hospitals?


561
01:25:16.515 --> 01:25:26.515
And it. we have like no time left. so if you incarceration basically means that you can't leave where you are.


562
01:25:26.515 --> 01:25:31.515
The doors are locked quickly. I remember using you you know I was considered non compliant.


563
01:25:31.515 --> 01:25:42.515
So they wouldn't let me off the word and whenever they they had the person come in to take people to arts and Crafts basketball team or whatever I just wanted to get up.


564
01:25:42.515 --> 01:25:55.515
So i'd line up with them and then, they see me and they know you can't go that's incarcerated when you have no ability to get some fresh air where be unmitered.


565
01:25:55.515 --> 01:25:58.515
Awesome. Thank you for sharing that. I will let you know.


566
01:25:58.515 --> 01:26:03.515
This has been recorded, and the transcript and the recording will be provided afterwards.


567
01:26:03.515 --> 01:26:14.515
The mentors that they reference today. They may not. It may have shown bits and pieces of it in the Powerpoint, but the full materials are on our website, and this Powerpoint will be at there as well We will be emailing


568
01:26:14.515 --> 01:26:18.515
all this information out afterwards. I encourage you to go check it out.


569
01:26:18.515 --> 01:26:28.515
There are 3 slides we we didn't get to which have resources, but we purposely did that, because we wanted to make sure that you'll have the resources to go There's state resources that you can plug into your own


570
01:26:28.515 --> 01:26:34.515
State, and there's national resources, governmental resources tons of stuff for you.


571
01:26:34.515 --> 01:26:38.515
And then we have Karen and Bronze email up there as well. for you to follow up.


572
01:26:38.515 --> 01:26:48.515
If you have additional questions. So and then there's a step Karen was so great, and put a step by step, guide, for how sales can be carrying this out.


573
01:26:48.515 --> 01:26:51.515
What does this look like from somebody at the time that walk into the door?


574
01:26:51.515 --> 01:27:01.515
To What do you do at every step after that so I Think you hearing and Ron, for your time today, and all the work that you've put into this, and you're continue to work on this effort.


575
01:27:01.515 --> 01:27:10.515
I think you know, talking about this within. Il Hopefully, we can all kinds of start doing. Be more active in this work, and I encourage.


576
01:27:10.515 --> 01:27:19.515
If you want to get more involved, please reach out to them or myself when we can kind of get you connected. And to some of those national efforts that Ron spoke about earlier.


577
01:27:19.515 --> 01:27:25.515
I think both of the interpreters and the card writer and thank you for your patience with the little bump with the chat and the captioning today.


578
01:27:25.515 --> 01:27:30.515
I'm glad we got it all figured out and I hope everybody has a good afternoon.


579
01:27:30.515 --> 01:27:44.203
Thank you. Thanks for making this possible April, and as represented by Sierra.