18:00:25 Supported Decision-Making: From Justice for Jenny to Justice for All with Jonathan Martinis
18:00:30 Testing testing testing.
18:04:34 >>MORNA MURRAY:  Solved that technical issue.
18:05:07 Welcome everyone. This is Morna Murray from Disability Rights Rhode Island everybody is coming into the room and we just unmuted everyone so we could see you here. But I would ask if you would to keep yourselves muted.
18:05:17 You can go on screen and do anything you want to do with your video but if you can keep yourselves muted for now that would be fantastic.
18:05:21 Can you hear me Jonathan? OK.
18:05:36 Can a couple people that are from DRRI unmute yourselves and let me know if you can hear me?
18:05:42 >> SPEAKER:  Hello this is Crystal, I can hear you.
18:05:59 >>MORNA MURRAY:  Michelle, I am not seeing where you are at the moment you are saying I am still muted. I'm going to go with the fact that people are still hearing me. I hear you but I don't see the ability to unmute myself. All right.
18:06:19 We have about, a little bit over 100 people signed up tonight we will take another minute and let people get in. This is the first webinar we are hosting, so we are still getting used to the whole Zoom webinar thing.
18:06:55 OK it is about 6:05 p.m. and I think we will get going.
18:07:16 Welcome everyone to the webinar series on Supported Decision-Making, Supported Decision-Making is one of the most important person-centered and empowering tools for people with disabilities, older adults or anyone who needs assistance with decision-making.
18:07:36 Again I am Morna Murray Executive Director of Disability Rights Rhode Island. We are proud to partner with Jonathan Martinis in this series.  Just a couple housekeeping details before I turn it over to Jonathan.
18:07:41 As you have heard and probably seen the webinar is being recorded.
18:08:10 It will be posted to our website for future reference. We have transcript and closed captioning being provided by Partners Interpreting and a full transcript of that will also be posted to the website. We ask that everyone mute themselves and as far as a video you can do whatever you want. There are different options. You can put it on speaker or gallery or whatever is most comfortable for you.
18:08:23 If you have questions throughout the session tonight that cannot wait for the question and answer session, feel free to put them in the chatbox. Jonathan will have time after he finishes his presentation to answer questions as well. 
18:08:31 You just enable your chat at the bottom of the screen and you can chat something into the chat box.
18:08:46 Can somebody raise their hand and tell me if they can hear me? I just want to make sure. Some people might be having individual issues. We will just keep going.
18:09:03 But the questions in the chat box and we will try to get to them during the session. Jonathan is a very flexible speaker and if we need to interrupt him from time to time we will. He has also promised to stay for all questions afterwards.
18:09:44 About Jonathan Martinis. He is an attorney and a senior Director for law and policy for the Burton Blatt Institute at Syracuse University.  In 2013 Jonathan represented Jenny Hatch, he will be talking about the case tonight so I will not go into it. The first trial that held a person has the right to use a Supported Decision-Making to make her own life choices instead of being subjected to a permanent and plenary guardianship.
18:10:02 Since that time Jonathan has led Supported Decision-Making projects in multiple states including New York, Ohio, California, Virginia, Vermont, Missouri and now Rhode Island. He has educated and trained tens of thousands of people around the country.
18:10:26 I was fortunate enough years ago to hear him during one of his trainings and actually be able to talk to him about issues we had in our own family wanting to avoid guardianship for my son. It is a pleasure both personally and professionally for Jonathan to be here tonight and to be working with him on this really great webinar series.
18:10:52 He has written or cowritten over 40 publications on Supported Decision-Making and I recommend his publications. He is a fantastic writer and a fantastic presenter. At this point, I turn it over to Jonathan.
18:11:07 >>JONATHAN MARTINIS:  It is an honor to be here. I am excited to talk to you about a subject that I think is the most important advance for civil rights for people with disabilities since the Americans with Disabilities Act.
18:11:18 What we will be talking about today and in the rest of this series is Supported Decision-Making. How Supported Decision-Making can contribute to a better life for people with disabilities.
18:11:34 That is what we will be talking about. Today is what I call a why presentation. Today will be about why Supported Decision-Making is a good thing. Why it can lead to a better life for people with disabilities and why you should try it if you can.
18:12:00 The rest of the presentations, the other four in the series will be about how we can use supported decision making in the programs, supports and services that people with disabilities use every day. As I began my slide deck, what I want to do is talk quickly about promises I make in all my presentations.
18:12:15 If you have heard of Supported Decision-Making what you have heard about it is it is an alternative to guardianship. Something you can do instead of guardianship or to get out of a guardianship and that is true. We are absolutely going to talk about that.
18:12:34 Before I even begin I always have two promises I make to every audience. The first promise goes like this even though Supported Decision-Making is an alternative to guardianship you will not hear me say today or ever that there should not be guardianships.
18:13:00 I'm not here to tell you if your guardian you did something wrong if you recommended guardianship you are evil that guardianship should be abolished, that is not my point. My point today is to talk about options and give you information so if you ever have to make the choice, the tough decision for a loved one about whether to seek guardianship you have all the information or at least more information to help you make that decision.
18:13:22 Second promise, everything I talk to you about today, every factual or legal statement I make, every assertion I make about supported decision making is going to be backed up by one of two things. Law including the law in your state and science including 40+ years of studies.
18:13:39 The things we are talking about today are not vapor wear they are not aspirational, they are not hopes and dreams. The thing we will talk about today and every webinar after this is based in hard science.
18:14:01 Last thing, if you have questions feel free to put them in the chat box I've asked Morna to interrupt me if a good question comes in. If it is important enough for you to ask in the moment, it is important enough for us to talk about. If the worst thing that happens that I don't get to all my slides it means we had a good conversation.
18:14:21 The very first thing I want you to think about is something people don't often think about. When you think about your life and your rights. Think about the rights that make you the product to be an American. The ones you hold the most dear the ones that are so basic in your life you do not think about them because you know you have them.
18:14:30 Things like freedom of speech, freedom of elections, freedom of religion, the rights to life, liberty, and the pursuit of happiness.
18:14:49 Think about what they all have in common. Choice. Freedom of speech is the right to choose what to say, freedom of elections is the right to choose who governs us. Freedom of religion is to choose how, when, or whether we worship.
18:14:55 Life, liberty and pursuit of happiness is to choose the kind of life we live and with whom we live it. Choices are what makes our life real.
18:15:19 There is a quote up on the screen from Jean Paul Sartre. If you have ever read him you know he is not the sunshine fellow. He says "I am my choices." Each and every one of us are the sum total of the choices we make. Every single day we make choices that shape us. The good ones, bad ones, silly ones, significant ones.
18:15:40 They make us who we are. Without choice we did not really have rights. If I cannot choose what to say, what good is freedom of speech? If you ask me what my favorite right is, it is the right to make choices. The right to say what kind of life I'm going to have. To direct the life I want.
18:16:04 Now, clinically, that right to make choices is called self determination. Self-determination is a fancy word. Really what it means is having control over your life, making choices in your life. People who are self-determined do things rather than having things done to them. They direct their lives. They control their lives rather than having someone else control their life.
18:16:12 When you hear self-determination think making choices. Making choices in your life to direct your life.
18:16:31 And what we know from 40 years of studies, just some of them listed on your screen right now, is that for people with disabilities, particularly people with intellectual and developmental disabilities, those who have more self-determination, make more choices and have better lives.
18:16:48 We have study after study after study going back to the 1980s that find that when people with disabilities make more choices when they have more self-determination they are more likely to be healthy, independent, employed, happier and safer. But the opposite is also true.
18:17:06 I want you to think about what your rights would be worth if you were not allowed to use them. If someone said to you, sure you have freedom of speech you can only talk when I tell you to and you can only say what I let you say. That is not a right, is it?
18:17:23 If I say sure you have the right to vote when I take you to the polls and if you vote who I tell you to vote for. That is not a right either. Without choice we don't actually have rights. All of our rights come down to that self-determination and opportunity to make choices.
18:17:32 The scary thing is that is exactly what we have been doing to people with disabilities for about 1500 years. Here's a confession.
18:17:53 I am a giant legal geek so I can tell you this because I have read what I'm about to tell you. About 1500 years ago in the Roman Empire it was the first time in the Western world that we put all the laws in one place. The Eastern world has us beat by thousands of years with the Code of Hammurabi
18:18:04 But the Western world very first time they got all the laws together in one place in one book was a book by the Emperor Justinian that he ordered to happen and it is called the Justinian Code.
18:18:29 Second confession, I am such a geek I named one of my children Justin. The first time we had laws and rights in one place one of the laws said that if you are feebleminded, and that was the word for people with disabilities, you had to have a curator over you to make your decisions for you.
18:18:48 To do things for you. The first time we had rights we had a way to take them away from people with disabilities. That began what I call a culture or expectation. If you are a person with disabilities, that is your destiny. You are going to need someone to run your life.
18:19:06 To take over your rights. That has followed us for 1500 years. In Great Britain where we got most of our laws from they updated the Justinian code in the middle ages. They said if you are an idiot or a lunatic, and that is what they call people with disabilities.
18:19:17 You had to have a committee over you to make decisions for you and exercise your rights. In America we call that guardianship or conservatorship depending on what state you are in.
18:19:37 I have to tell you again there's nothing wrong with guardianship or conservatorship when done properly and is appropriate and guardianship when done appropriately works the same way state to state. Every state has its own laws, words and names. What you call guardianship in Rhode Island may be called conservatorship in California, for example.
18:20:03 Even though the laws have different names they work the same way. They work like this. If a judge says, I cannot exercise some or all of my rights what the judge is supposed to do is take away the rights I cannot truly exercise and only those and give them to someone else. In that situation, Morna becomes my guardian. She is empowered to do the things I truly cannot do.
18:20:35 Again, if guardianship worked that way, I would be a huge fan. The problem is what we know from study after study after study is that the vast majority of guardianships, over 90% in the larger study, take away all rights whether or not the person is able to exercise them. Whether or not the person wants to lose them in some cases whether or not the guardian wants the rights. The judges say time and time again it's easier to check all the boxes then to pick the one to check.
18:20:58 That is why I say guardianship can be dangerous when it's taking away rights people can actually exercise. When it is taking away opportunities people should have. I call those types of guardianships overbroad or undue because the person doesn't need them or they do not need them to be as broad as they are and those types of overbroad and undue guardianships are dangerous.
18:21:16 They give guardians often complete control over the lives of people. They let guardians say where you go, who you see, where you were, what kind and whether you get medical care. And again, if that is what a person truly needs there is no problem with that.
18:21:23 But when a person is able to exercise the rights, that is dangerous when you take them away.
18:21:37 We have known from almost 50 years of study after study after study that when people with disabilities lose their self-determination, when they lose their right to make choices their lives get worse.
18:21:52 We knew as far back as 1975 that when people with disabilities felt helpless, hopeless and self-critical. The rest of that sentence on your screen is they would not "behave" because they saw no point in behaving.
18:22:05 We know from another study that people who lost their self-determination had lower self-esteem. They were more passive. They were less likely to try new things.
18:22:20 That is not rocket science, is it? If I tell you time and time and time again that you cannot do something or that you have failed at doing something that you're not good enough, smart enough, or strong enough to do something are you feeling particularly motivated to try it?
18:22:36 We have a phrase that's called learned helplessness where we have study after study that has found if you take away the right to do something people view that as a personal failure and they are less likely to try new things because they think they might fail at those too.
18:22:50 I tell people guardianship is not a good or bad thing. It is a big thing and we have to think about it. If we do it without thinking about it and we put it on someone who does not need it, we can make their lives worse instead of better.
18:22:55 That is a problem that Congress and the American public has known about for decades.
18:23:16 There's been lots of talk about guardianship with Britney Spears. About three weeks ago Congress held hearings looking into guardianship. Congress held hearings in 1987. Congress held hearings looking at guardianship.
18:23:44 They took testimony from people under guardianship, from guardians, they looked at state guardianship laws and they did research. What you're looking at on your screen right now is page one, paragraph one from 1987. These are things that we have known about for 35 years. Look at the bold words. "The typical ward has fewer rights than a typical convicted felon."
18:24:04 When we put someone under guardianship what we are doing is giving someone ultimate power. The power to decide where they go, what they do, how they live, where they live and whether they get medical treatment and in the words of the Congressman sometimes when they die it is in one short sentence the most punitive civil penalty that can be levied against an American citizen.
18:24:09 The rest of that sentence, except for the death penalty.
18:24:23 Where can we go from here? I made you a promise we are going to keep it. I'm not here to say there should never be guardianships. Of course there are times when they are appropriate. If a person is disabled when he or she cannot take part in the decision-making process of course it is appropriate.
18:24:43 If a person does not want to be part of the decision-making process and is putting themselves in danger, guardianship could be appropriate. In an emergency if no one is around to help, guardianship, at least temporarily, can be very helpful. So again not here to say there should never be guardianships but what I'm here to say is there should never be guardianships just because you have a disability.
18:25:00 Or because you are a certain number of years old, because you need help or because you're not particularly good at something. The two at the bottom of the screen that turn my stomach because I hear them all the time. That's the way we've always done things and because it's for your own good.
18:25:21 The one at the bottom really gets to me. I hear time and again. It's for my mother, father, daughter, brother, sister's own good. We say these things in the face of decades of studies that show it could be the worst thing for a person, the loss of self-determination.
18:25:33 Think about the term "for your own good." Think about the times in your life when you have heard that. Ask yourself have I ever heard that and then have something good happen?
18:25:44 That is usually what happens right before you get a shot or a blood test. But that is what we say time and time again.
18:26:08 I hear parents across the country say it and they say it well meaning. These are the vast majority of people seeking guardianship who are trying to do the right thing. If I hear all the time if I don't get a guardianship my son, daughter, or loved one might sign something they shouldn't sign or do something they shouldn't do or meet someone they shouldn't meet or go somewhere they shouldn't go.
18:26:24 They absolutely mean well. I never question, especially parents, who mean well. It is a great quote on the screen. It is over 90 years old now going on 95 years old and it's still just as right as it was the day the Supreme Court said it.
18:26:49 They said when we mean the most well we have to be the most careful. When we act without thinking and just assume something and do not think about the consequences, bad things happen. The greatest dangers to liberty lurk in the insidious encroachment by people of zeal who are well-meaning and without understanding. When we think guardianship is the only option.
18:27:07 We think it's the only thing we can do, it's the best thing we can do and we do not consider decades of studies saying self-determination is the key to a quality of life for people with disabilities that losing self-determination lead to a worse life for people with disabilities.
18:27:21 And yet I still hear it time and again. They sign something, go somewhere they should not go or meet someone they should not meet. I ask people without judging them to think about their own lives. Think about things they have done.
18:27:47 I ask them these questions and maybe you can play along with me and think about them in your head. Have you ever closed on a mortgage? I have multiple times. I'm a picture of the crisis in the early 2000's in the flesh. I can do one in my sleep. A bunch of people around the table with you. Their attorney, seller, seller's agent, if you're lucky you have an agent.
18:28:00 What is definitely in the room with you is a stack of papers going up to the ceiling. Those papers are handed to you one at a time and you are told sign here. There is a sticker on it that says sign here.
18:28:16 Ask yourself this question, did you read those first? If you're like me, you did not. If you're like me you put hundreds of thousands of dollars and 30 years of your life in the hands of a bank. You did not check out the fine print. You don't know if that bank is under indictment or not.
18:28:41 That is a horrible decision. Where is your guardian? Or I ask then have you ever consented to surgery? I have, I'm not only a legal geek but I am a giant baby. I remember my knee surgery real well. I get wheeled into the surgery center. My heart is going 1000 miles an hour. There are people I have never met getting in my face talking jargon.
18:29:03 They're all talking medical jargon. They're shoving papers in my face and saying sign them. Did you just put your lives in the hands of strangers and probably we write to not sue? It's a horrible situation.
18:29:17 We are God willing coming out a couple years of the pandemic. We have all been stuck in our houses for a while and I wonder if any of you have played one of my favorite pandemic games which goes like this.
18:29:35 Have a bunch of drinks and go on Amazon and see what shows up the next day. With Prime I can find out what kind of day I had by what shows up on my doorstep. There's another piece of exercise equipment I'm not feeling very secure about what I ate.
18:29:50 These are all horrible things. We have all found ways to make horrible decisions in our lives. We have all signed things we should not have signed. We have all bought things we should not have bought. We've all done things we should not have done.
18:30:05 Doesn't that mean we need guardians for our own good to stop us from wasting money. To stop us from signing things willy-nilly. To stop us from bad relationships?
18:30:19 Better relationships. How many people out there have had a really bad relationship but it taught you what a good one was? How many people out there has ever been that rescue buddy for someone or had a rescue party?
18:30:38 How many people have woken up in the morning and gone "oh, wow, I am never doing that again." I'm glad I did because it's a great story but I'm never doing that again. We have phrases for that. A learning experience or teachable moment for when we do the wrong thing but get better because of it.
18:30:46 How many of us have ever made that mistake and grown from it had that critical error that taught us what we want to be and how we want to be?
18:31:10 What I'm trying to get at is this. Jean Paul Sartre was wrong. We are not our choices. We are our bad choices. We have all made horrible choices. We have all signed things we should not have signed, done things we should not done, and dated people we should not have dated.
18:31:26 We are better people for the mistakes we have made. When people mean well, when people say that guardianship is for someone's own good because I mean well and do not want my loved one to make that mistake are we not really saying with the best of intentions they should not grow?
18:31:35 They should not have the opportunity to be the better, stronger adult, the productive adult part of society that we earned with our pain?
18:31:52 Another example, play along again. If you're old enough think about the year 1995. The more I do presentations asking people to think about 1995 the more I realize lots of people out there were not born in 1995 or were in grade school in 1995.
18:32:08 As old as that makes me feel, I can say to all those people and on behalf of everyone else, we hate you. To everyone else if you can remember 1995, think about what life was like for people with disabilities in 1995.
18:32:30 There was only five years after the passage of the Americans with Disabilities Act. It was four years before the Olmstead decision that said people with disabilities have the full and equal right to be part of their community. In other words, in 1995 it was perfectly OK to say with people with disabilities you will live in an institution.
18:32:49 You have no choice. I don't care what you say or your doctors say you will live in the institution. In 1995 a sheltered workshop with people with disabilities who only work with other people with disabilities making less than minimum wage was not only legal but it was a preferred outcome.
18:33:06 Schools and vocational rehabilitation could brag about the number of people they placed in sheltered workshops. In 1995 we did not have Medicaid waivers like we have now or have programs like we have now. Or supports and services like we have now.
18:33:32 Fast forward to today. Think about where we are today. Today the right to be a full and equal member of your community. The right to live in the community is a Supreme Court protected right. The right to work in the community and integrate a job making regular paying paying regular taxes, being part of the workforce is an expectation.
18:34:01 Today we have supports, services, and technology. Consider the phones you have. And realize how much more these are then phones. In fact, we use our phones for things other than telephones way more than we use them as phones. My phone can help me have a call and a videoconference with my doctor.
18:34:11 It can allow me to conference and someone else to be part of the conference for the doctor can understand me so I can ask them to help me understand the doctor and asked the doctor to work with a person to help them understand me.
18:34:25 With my phone I can give someone access to my bank account to monitor my spending if I want to watch me and help me budget so from overspending that person can go "Jonathan, you might want to cut back a little bit."
18:34:41 With my phone I can set reminders to take my medication. With my phone I can set automatic refills for my medication. With my phone I can set reminders for self-care and for appointments. Quick example.
18:34:48 I have a client with a traumatic brain injury that also has diabetes. Because of her TBI she sometimes forgets to look after her blood sugar.
18:35:06 A couple times she had some pretty severe crashes. She is the kind of person that would have been in an institution in 1995. She got a free app that connects the glucose monitor to her phone so if her blood sugar gets too low it sends her a text and says please eat something.
18:35:23 If it gets lower it sends a text her mother, doctor, and sister so they can intervene. Like that she can live independently. She is able to take care of herself she would have been an institution 26 years ago. That is the kind of world we have now.
18:35:30 We have more ways to make more people more independent than ever before.
18:35:40 So ask yourself, ask me, ask anyone why have the number of people in guardianship tripled since 1995?
18:36:08 In just the 26 years I was talking about where people have gotten so many more tools to be independent the number of people who have gone into guardianship has gone from approximately 500,000 by some estimates to 1.5 million. That is a million more people in 26 years. And, statistically speaking, they have lost all their rights.
18:36:37 The National Council on Disability released a study and they found the fastest growing population into guardianship for 18-year-olds who statistically speaking have lost all their rights for the rest of your life.
18:36:50 We know people in guardianships can suffer significant impact on their mental health. They feel less well. They are less able to function. In some cases they live less long.
18:37:07 On the other hand we know people in power to have more self-determination have demonstrably better audio like. They are more likely to live independently and be part of their communities and work. Here's the number one reason why I hear from parents why they are seeking guardianship.
18:37:14 I never question parents for this. It is safety. If I don't get guardianship my son or daughter might be unsafe.
18:37:41 The first job of every parent is to protect their children. I get it. I understand it. So I never question. To say that, I do talk about science. There's a study on the screen who captures it. There is a professor in New York from Long Island University and Dr. Khemka has been a large part of her career looking at the interplay between self-determination and safety. This is one of the studies she did.
18:38:11 She worked with a group of women with intellectual and developmental disabilities. If you do not know this you should, women with IDD are way more likely to be abused, neglected, physically, sexually and emotionally than any other part of the population. Dr. Khemka worked with women with IDD. She did an apples to apples study meaning she worked with women who had similar abilities and limitations.
18:38:27 What she did was a classic experiment. She divided them up. There was an experimental group and a control group. The control group she said go live your life. For the experimental group she gave them access to a curriculum that was designed to increase their self-determination.
18:38:45 To help them make more decisions, take more control of their lives and to expect more control over their lives. When the curriculum was done, she brought the groups back together and she gave them a recognized test that was based on the ability to recognize potentially abusive situations and avoid them.
18:39:02 Do you know what she found? Apples to apples remember. The women who were more self-determined who had gone through the course were better able to recognize potential abuse and better able to avoid it. In other words, they were safer.
18:39:23 I have told judges this across the country and parents across the country. If you want to increase safety, do not take rights away. Build self-determination. That is not rocket science. Aren't you more protective of the things you know are yours. If you know it is your life, body, your moment, your stuff and property are you more likely to protect it?
18:39:40 If you think someone has the power to take it away, you're more likely to give it up. So that self-determination and awareness leads to common sensibly and scientifically to greater safety. This is what I call the cherry on top of the sundae.
18:40:06 There was a study done nationally call the National Core Indicators Study. It was done in 46 states. What that did was it looked at the quality of life of people with intellectual and developmental disabilities and like Dr. Khemka's study was an apples to apples study. It compared the quality of life of people with similar abilities and limitations to other people with similar abilities and limitations.
18:40:26 They used the old phrases mild, moderate and severe disabilities. They compared moderate and moderate and severe and severe and mild and mild. What the point of that study was was to look at the impact on quality of life of people with disabilities of certain variables.
18:40:59 One of the things they looked at was whether or not people have a guardian. And on that one thing alone, that one issue having a guardian, but the National Core Indicators Study found was this – apples to apples remember – people who do not have guardians are more likely to work, live independently, to have friends, go on dates and socialize in the community and practice their choice than people of similar abilities and limitations who have guardians.
18:41:14 There was such an amazing finding they did it again a few years later. They did it again on the same idea looking at just the issue of having a guardian and not having one on many of the variables on that variable alone they found the same thing.
18:41:29 Apples to apples. People who do not have guardians are more likely to have their own homes. More likely to make choices about their lives. More likely to be inspected, work, socialize, date, be independent and get married.
18:42:00 I ask people this. If we know or at least strongly suspect that the one thing standing in between having this and not having this could well be having a guardian isn't 1500 years of the expectation that people have to have guardians too much? Don't we need to stop and think about whether guardianship is appropriate before assuming that is.
18:42:19 Where can we go from here? What I'm hoping I have shown you is that self-determination is the key to a good quality of life for people with disabilities. I'm hoping I've shown you the other side of that that losing self-determination can hurt the quality of life of people with disabilities.
18:42:40 If we can agree on that, then there is one more thing we have to agree on. That is this. Self-determination is not saying go be on your own and go be self-determined off on your own. People with disabilities often need more help. Everyone needs more help. I spent a long time trying to get in this webinar and going to the registration section.
18:42:57 Help is part of life for everyone. What I want to propose is this, and I hope you will agree with me. That what we need to do is find ways to maximize the self-determination of people with disabilities because that is the key to a better quality of life.
18:43:08 While at the same time making sure people have access to the help they need so they can exercise their self-determination effectively and safely.
18:43:37 If we can all agree on that, and I hope we can, I have a story to tell you. This story involves Jenny. Jenny is on your screen right now. And I met Jenny Hatch in 2013. At the time she was a 29-year-old woman. She was a high school graduate. For five years she lived independently and I don't mean in a group home, I mean in her own apartment.
18:43:55 I saw the phone records. The records indicated it was spotless with a roommate. She had the same job for five years. A regular job making regular pay and paying regular taxes. She had a church she went to, friends she went out with. 
18:44:20 That is the thing I want you to know about Jenny Hatch she had a life like everyone else. That's all she wanted. She wanted to go to work, come home, see her friends, go to church and live like everyone else. And she did until the day she was riding her bike and got hit by a car. An accident that caused no change in her cognitive ability.
18:44:40 She had to have surgery. Shortly after getting out of the hospital she found herself on the receiving end for petition for guardianship followed by her mother and stepfather. In August 2012 she walked into the courtroom in a small town in Virginia with all her rights.
18:45:17 She walked into that courtroom with all the rights everyone else has and in less than three hours later she walked out with nothing. Jenny who had been living in her own apartment and later was living with friends where she was welcome to return to and wanted to live at was instead put in guardianship and required by her guardian to live in a group home.
18:45:40 Jenny was told she had to work in the sheltered workshop operated by the people who ran her group home. She worked more or less full-time for a month and made less than $1000 total. Jenny's cell phone was taken away. Her Facebook password was changed and her laptop was taken away.
18:45:59 If you wanted to see or speak with Jenny you had to fill out a permission slip that told the guardians who you were, what you wanted to talk to her, what you would talk about, where you would go if you visited her, how long you would be gone and when you would be back. You had to agree to the rules on the back of the paper.
18:46:17 Rule number one you were not allowed to talk to her about the guardianship because the Guardian said it upset her to talk about the guardianship. You know why it upset her? She did not want to be in guardianship. She wanted to live with her friends. She was told get used your life you live here now.
18:46:24 She wanted to go to her church and was told get used to your new life we go to the southern church.
18:46:45 People always look at me like I am making that up. I actually put the permission slip online. You can see it. If you go to JennyHatchjusticeproject.org there is a section on her drop-down menu that says Justice for Jenny Trial and you can see that permission slip.
18:47:10 I will tell you why that's important. The first time I met Jenny, I walked into the group home, spoiler alert if you carry a briefcase and talk fast you can get in just about anywhere. I met Jenny and was with her lawyer at the time and I said I would like to be your lawyer so I can help you. I would like to help you can I represent you? She said yes.
18:47:35 I became Jenny's lawyer. First thing I did was contact the lawyer for the guardians. Contact the lawyer for her parents and I said I'm going to be Jenny's lawyer. The case had gotten a lot of attention it was on TV. I would like to work this forward. I know you think she needs a guardian she does not think she needs one and that's what why we will go to trial.
18:47:49 I have an important question. This permission slip does not apply to me does it? I was told yes, yes it does. I said are you saying I'm not allowed to talk to my client about her case? I was told yes those are the rules.
18:48:12 Now stop and think for a second. If Jenny Hatch was, let's say an ax murderer and she was found holding an ax in one hand and a head in the other hand and she said I did it what would she have the right to do? Talk to a lawyer. But Jenny Hatch was not lucky enough, I guess, to be an ax murderer.
18:48:32 Jenny Hatch did not have the same rights as an ax murderer because according to her guardians' attorney Jenny was not allowed to talk to a lawyer. So the very first time I went to court for Jenny I had to ask the judge to give her the same rights as an ax murderer because I had not been allowed to see her file yet.
18:48:49 I had not been allowed to have more than one conversation with her yet. You can go to JennyHatchjusticeproject.org you will see the motion I had to file that I attached the permission slip and emails between me and the attorneys saying I'm not allowed to talk to her.
18:49:19 We had to ask the judge for the right to talk to Jenny. Thank God they had a great judge. I was thinking the same thing you are, I know you're thinking about it right now. Why in the hell did she need a guardian? If she was 29 and living and working independently and the accident did not cause any cognitive impairments why did she need a guardian? The first thing I saw in the file was the order putting her in guardianship. That is what you see on your screen was like the last paragraph.
18:49:35 This is the powers the guardians had. Let's look at that. The guardians have the power to decide who sees her, who visits her, what kind of healthcare, safety and data services, education and therapy and where she lives.
18:50:01 Look at those words. Did Jenny Hatch have any rights left? When you lose all of these rights are you really even an American anymore if you are an adult? Jenny Hatch lost everything in just three hours. Why? In the file was transcripts from that three-hour hearing. What I learned from reading the transcripts was this.
18:50:17 When Jenny was in the hospital after her back surgery a psychologist went in to give a capacity evaluation. A capacity evaluation is supposed to determine a person's ability to make decisions. A person's capacity to live independently.
18:50:29 The psychologist who never met Jenny goes into the hospital, a place where Jenny had never been and gives her a capacity evaluation while Jenny was on Percocet.
18:50:39 That psychologist was the star witness at that three-hour hearing. What you see on the screen were her exact words.
18:50:49 When she was asked about Jenny's ability to live independently the psychologist said if she had assistance she might be able to do that.
18:51:01 When she was asked about Jenny's legal knowledge or ability to handle a document she said she would need assistance. When asked about money management she would need assistance with the bank account. When asked about what Jenny needs.
18:51:11 The psychologist said Jenny's going to need assistance to make decisions. She will need people to guide her and give her assistance.
18:51:20 When asked what would be best for Jenny, the psychologist said what I would believe would be beneficial is to be surrounded by people who support and love her and give her the assistance she needs.
18:51:38 I kept reading and I learned that when Jenny turned 18 her parents had her sign a power of attorney. By power of attorney I mean one of the ones you pull off line is that big and all the legal words in it that I don't understand even as a lawyer.
18:51:55 We asked a simple question if you think she is not able to make decisions or understanding... What we expected was for them to say well, we wanted to give her a chance but now we know she cannot make decisions.
18:52:19 They double down. Their exact words are on your screen. They said Jenny was able to sign the power of attorney because her lawyer explained it to her. Her lawyer got to know her and let her ask questions and they had several visits and went over it page by page and line by line and based upon a series of observations over several visits the attorney concluded and we concurred that she was capable of understanding these documents.
18:52:29 On trial they tripled down and say their doctor said Jenny was able to understand this complex legal document because it was explained to her.
18:52:54 At that point, I knew and I know now all these years later that that psychologist was actually right. Broken clocks, right? That psychologist was right. I talked to Jenny pretty frequently. I talked to her almost every day during her trial and I talked to her at minimum weekly since.
18:53:12 Here's the thing the psychologist was right about. Jenny absolutely needs help to understand legal issues. She absolutely needs help to understand medical issues. She totally needs help to budget and manage money and yes she needs help day to day. Know what that makes her?
18:53:26 Human. Aren't we all Jenny Hatch? There is no person not listening to me right now that doesn't need help doing something. Everyone needs help doing something at some point in their life.
18:53:42 The difference is if you're not a person with a disability if your temporarily able-bodied as I put it because we're all one second away from having disabilities it is expected we will need help.
18:53:47 People with disabilities like Jenny Hatch are expected to not be able to do anything.
18:54:10 What we had to show the judge is it is no sin in the psychologist's words to need assistance. It is no sin to have people in your life to give you assistance. What we talked about is Supported Decision-Making. I know I am 31 slides in and finally getting to the point.
18:54:24 We had to show the judge what Jenny did and what is acceptable. What is Supported Decision-Making? Good news there is a definition on your screen. You can screenshot this. I'm sure you can have this slide deck available to you.
18:54:48 Supported decision making is a recognized alternative guardianship through which people with disabilities use friends, family members, and professionals to help them understand the situations and choices they face so they may make their own decisions without the need for a Guardian. If you Google Supported Decision-Making you will eventually find a definition and yes, I wrote it. And do me a favor, forget it.
18:55:14 I think it is crap. I think it is pseudo-intellectual, insecure crap. If you really want to know what supported decision making is, ask yourself how you make decisions. Ask yourself what you do when you do not know what to do. What do you do when the doctor speaks jargon? What do you do when the auto mechanic starts throwing around phrases you have never heard before?
18:55:27 What you do when you do not know what to do? You get help, don't you? You have people in your life who you go to for assistance. You ask for advice and you do research.
18:55:40 That's what supported decision making is. Supported decision making is getting the help to do the things you need to do to understand what you're going through so you can decide what to do. We do it every single day.
18:55:56 I guarantee you you used supported decision making at some point today. You do not call it that because who calls it that? It is just like -- think about all the clichés we have in life about supported decision making.
18:56:16 Think about it. To make a snap judgment, make an informed choice, get a second opinion. My dad's favorite phrase if you measure twice you only have to cut once. They all mean the same thing. Get help when you need it when you need to do the things you do. Always double check. Always get advice.
18:56:26 If you are in the workforce, you are often evaluated on your job how will you work with others and how well you seek help.
18:56:37 Whenever someone comes to me for advice the first question I ask is what research have you done and who else have you talked to? In other words have you used Supported Decision-Making? We are all using supported decision making every single day.
18:57:07 The difference is if you do not have disabilities and your temporarily able-bodied using Supported Decision-Making is a virtue. You are supposed to. You are called wise when you use supported decision making. You are making an informed choice when you use Supported Decision-Making. The difference is when someone like Jenny Hatch says I don't get it, can you explain it?
18:57:22 For 1500 years we assume she is dumb and that she cannot do things. When people with disabilities historically have needed help doing something, society has assumed they cannot do anything and statistically speaking through guardianship they lose the right to do everything.
18:57:38 So we had to show the judge that Jenny had been using Supported Decision-Making quite well for her entire life. Again she did not call it that because who calls it that but we saw the power of attorney, the lawyer explained it and Jenny understood it and signed it.
18:58:05 There is a lot of talk about her getting surgery after accident. We learn that Jenny was needle phobic and was originally not going to consent to surgery. We heard from her father and stepfather about how wonderful the doctor was and the doctor saying Jenny when you wake up it will be gone and you will be able to walk better. And her family saying you have to do this and explaining why it's important and she understood and she signed the consent herself.
18:58:31 That was a big deal to people signing it herself when her case manager testified. We asked how did Jenny sign her waiver plan and we were told they used Person Centered Planning. Don't get me started. But Person Centered Planning when they went through her plan page by page and line by line and they would not let her go to the next page until they were sure she understood the last page.
18:58:50 She had to initial each page and when she understood every page and they were sure she did she sign the plan herself. They talked about a Medicaid application, have you ever seen one of those up to the ceiling? They explained it and she signed it.
18:59:15 For six days we had witnesses on talking about the way Jenny used to supported decision making. We had experts on what using supported decision making was better for independence and quality of life. We finally got down to what I'm sure will shock you to hear is my favorite part of every trial. Closing argument.
18:59:33 Closing argument is when I get to live every Al Pacino fantasy this boy from Long Island has ever had. For 45 minutes I went around pounding the table saying she does not need a guardian. If she can make decisions without a guardian using Supported Decision-Making there is no need for a guardian.
18:59:54 When I was finished ranting and raving, the judge said I will be back in 15 minutes. He did not come back for an hour. It gave me time to tell Jenny we were going to lose. In the same transcript we learned about the psychologist, the judge had been quoted as saying something like he had a nephew without affliction and would want him protected.
19:00:12 The judge should question our experts about whether Jenny should earn her rights or should start in guardianship and earn her way out. I was telling Jenny we were going to lose this case and I expected to. We expected to appeal it and win in the Court of Appeals in Virginia.
19:00:36 The judge came back and he started reading his order. What you will see is the first several pages all about why she needed a guardian. Bad choices she made and protection she needed. It gave me time to rub her shoulder like you see on TV and tell her we are going to fight it. That she had fought it for a year and she can fight for more.
19:01:09 She said he is going to send me home. And as she said that the judge said, however, and you never saw heads come up so fast because no lawyer wants to hear however. You do not want to be on the other side of however. The judge said however, Jenny you have not shown me you are ready to be in charge of all areas of your life. He did in fact keep her in a guardianship it was a guardianship over two things and two things only. Health decisions and safety decisions.
19:01:30 He gave her the right to make all of their choices going forward. Then the judge said it was only going to be a guardianship for one year and it would expire in August 2014 automatically. And it did. Jenny has been living without a guardian for more than 7 years going on 8 now that we are in October.
19:01:56 Then the judge said one more thing. The guardians are not going to be your parents. I did not tell you about Jim and Kelly. They were Jenny's employers. I told you Jenny had the same job for five years. She worked for them. After she had her surgery she was not able to go back to her apartment. She needed specialized rehabilitation equipment.
19:02:17 She was not able to live independently for a bit and her parents would not take her in. Do you know who took her in? Jim and Kelly. Her employers said come live with us. Jenny did. She wanted to live there. They wanted her to live with them. They made themselves a family unit.
19:02:42 When Jenny was undergoing the guardianship procedure before I ever heard the name Jenny Hatch, Jim and Kelly hired their own attorney. They spent about $50,000 on their own attorney to fight for Jenny. What their position was is that Jenny did not need a guardian but if she has to have one let us because we will support her. We will do the things she wants to do instead of taking her rights away.
19:02:58 The judge said they would be the guardians for that one year. Then the judge said this, that the job of guardians is not to make decisions instead of Jenny, in Jenny's place.
19:03:17 The job of the guardians is to assist people in making their own decisions. To help them learn to use Supported Decision-Making. That was the first time a trial judge ever used those words in the United States. He said your job as guardians for this one year is to prepare her to use Supported Decision-Making.
19:03:41 There are two more things the judge said. He said one, get her out of that group home today and to come and get her back to work if she wants to work on Monday. Jenny Hatch who walked into this tiny courtroom a year before with all her rights and walked out with nothing got to walk out this way on that day. This is my favorite picture that does not involve one of my children.
19:04:06 Jenny had been told to give up, and get used to her new life and she wouldn't. Look at that face. She never gave up. Learned helplessness never kicked in with her. That is the front page of the Washington Post. Jenny got justice. She went home that day. That's a great story, isn't it? It's a great inspiring story.
19:04:44 If all it is is a story, I just wasted about 20 minutes of your time telling it. This story cannot just be about Jenny when we say Jenny got justice the important question is why. Why her? The answer is not because she is an angel. The answer is not because she is a hero. The answer is not because she is quote unquote high functioning. Her measured IQ was 49. So there were lots of people with higher IQs or higher functioning and no doubt have lost all their rights so why did she get justice?
19:05:12 The reason she did was because she had help. Tons of help. Friends and professionals. Jim and Kelly paying $50,000 for their own lawyer.  The national organizations they came from all around to Virginia, my now boss came down from the University of Syracuse to testify on her behalf for almost no money.
19:05:31 The media loved her. There was a reporter who followed her case from day one and brought it to people's attention. That is where the Justice for Jenny name came from. She had a judge who was willing to listen and learn. He went from afflictions to earn your rights to supported decision-making.
19:05:52 You know what that means? It means she got lucky. That is why I told you this story. Because the lesson that Jenny's story has to tell us all is this. Our rights, our justice, and self-determination should never depend on getting lucky.
19:06:10 They should never depend on friends who have $50,000 to spend on you for an attorney. We are born with rights. People with disabilities have the same rights as everyone else. That is the moral of Jenny's story and that is why I told it to you.
19:06:28 Where do we go from here? This is the law in Rhode Island on the screen. The law says a person may not be put in guardianship unless a court finds by clear and convincing evidence and that is the highest standard we have in civil law.
19:06:49 You have heard beyond reasonable doubt, this is just below that. A person cannot go into a guardianship unless there is clear and convincing evidence that person needs a guardian to provide assistance with things they cannot do. They have to prove that person cannot do things. Cannot make decisions in areas of their life. Cannot make decisions in their life.
19:06:58 I want you to think about what that means to be able to make decisions, that word capacity again. The capacity evaluation that Jenny got.
19:07:18 What I want you to think about is what capacity means. You already know the answer to this question. You already know that capacity is not a yes or no question. Capacity changes day after day. You know why I know you know this? Because your capacity is different than my capacity.
19:07:35 There are some decisions you can make without any help. There are some decisions you absolutely need help to make about things you don't know. There are some decisions you can't make it unless you have help. There are some days when you don't feel well enough to make any decisions.
19:07:53 There sometimes when you're so stressed out you should not be making decisions. You want the best example of this? Unless you have a medical license and a medical degree, you do not have the capacity to take care of your health because you cannot diagnose yourself and you cannot prescribe medicine to yourself.
19:08:13 You know what you do? You go to the doctor. You get help. The doctor is the help that helps you exercise the capacity that you have. When I go to the doctor and I asked the doctor to make me feel better in the prescribing a pill. I take the pill because the doctor said so.
19:08:28 I don't read the label. I don't know what is in azithromycin or erythromycin. I don't know the difference. I just know I trust this doctor to diagnose me and that the doctor recommended that I take it.
19:08:33 I have the capacity to take care of my health because I have the help from the doctor.
19:08:53 So capacity is situation specific. It depends on the help you have. It depends on where you are and how you are feeling. So capacity changes day to day and situation to situation. What you have to think about when you're thinking about guardianship are 2 important questions.
19:09:14 The first one goes like this. If you can only make decisions about your life, if you can only make financial, health, living, relationship and any other decisions when you get help, do you need a guardian? The answer to that has to be no because otherwise you and everyone else who gets help everyday we need a guardian.
19:09:53 The second question is even more important. Before you seek a guardianship, before you recommend one, you have to ask the most important question. What else have you tried? 98% of the time, yes, people in comas need guardians. But 98% of the time you cannot know with clear and convincing evidence that a person cannot do things until you've given them a chance to try. Until you have given them opportunities and support to see if they can until you examine other options.
19:10:10 I tell this to judges all the time. I would be happy to tell judges in Rhode Island the exact thing. You cannot get to clear and convincing evidence until you know what else has been tried. There has to be evidence and questions about whether that person has had support or could do things with support.
19:10:32 That is not my position only. That is the position of the National Guardianship Association. The National Guardianship Association which is made up by guardians, of guardians and for guardians the website is guardianship.org. There is nobody more invested than the NGA.
19:10:46 This is what they say before guardianship try something else. Try Supported Decision-Making. It might work. It might not. If it doesn't work, there is no problem with guardianship. Supported Decision-Making can do for people with disabilities what it does for you.
19:10:55 Think about the way you use it in your life to get a second opinion to weigh your options and make that pro and con list to make sure you understand what is going on.
19:11:20 To interpret information in a way you can wrestle it down to the brass tax that leads you to make decisions. That's all what supported decision making does for you and I can do that with people with developmental and intellectual disabilities. They might need more help, more intensive help, they might not but they might. The concept and principles are the same.
19:11:49 Here's the second thing you need to know, it's good news. There is no one way to do it. Tell me what step one is, tell me what step two is I'm not going to do that. You already know there is no one way to use supported decision-making. There will be someone some way I think that will try and sell you something that says I have the one true God, app that shows you how to do it and when they say that runaway.
19:12:01 I tell you that as someone who has written two books about Supported Decision-Making. There's not only one way to do it. You already know the support you need is very different from the support everyone else needs.
19:12:12 >>MORNA MURRAY:  I hate to interrupt you. This is an awesome presentation but we have a really good question in the chat box and I wanted to give it to you.
19:12:29 I really apologize if I'm mispronouncing your name. The question is how difficult is it to move from guardianship to Supported Decision-Making with all parties cooperating?
19:12:43 >>JONATHAN MARTINIS:  Theoretically, it should not be hard at all. Because every state, Rhode Island included, has a law that if guardianship is no longer necessary it can be terminated.
19:12:51 I have absolutely represented people in the past couple months to help them go from guardianship to Supported Decision-Making. The problem is often culture.
19:12:59 Again the expectation that guardianship is still needed. You still have to convince the judge that is the right thing to do.
19:13:10 If everyone is on the same side, if there is no opposition to Supported Decision-Making instead of guardianship it should be easier.
19:13:22 But I always tell people the easiest way out of a guardianship is not going in because now you have to convince the judge that guardianship is no longer necessary.
19:13:41 Were you run into culture is the old phrase for getting out of guardianship was called restoration. Restoration to capacity. I've heard judges say that's like being cured and people with Down syndrome, people with intellectual disabilities do not get cured. You run into that culture.
19:13:56 How do you know you don't need it anymore? You needed it then. My answer is I hope it will be hard because everyone is on the same side but it might be. It comes down to the judge you get and the material you put forth.
19:14:05 I realize that wasn't a very inspiring answer, but is the best one I have.
19:14:23 I would be happy to talk more with you about things like that but that is the problem is the culture of expectation.
19:14:46 The thing that is important when you're developing those Supported Decision-Making models is to think broadly. When you are thinking about what is the best way to use Supported Decision-Making is to think broadly. Everybody uses it differently. Some people might use informal support I call it a listening ear or shoulder to lean on. Someone to bounce ideas off of.
19:15:02 Some people have what I call go-to people. I call my sister who is an educator when my kids are having trouble in school. I go to a friend about questions with finance because he's in that field. I go to a particular attorney that she is a specialist in.
19:15:24 We can write go-to people into agreements or powers of attorney or advanced directives. We can say I want to work with Morna on financial stuff. I want to work with Crystal Martin. I want to work with Kate about healthcare and Crystal Martin about financial issues because I trust them and they can help.
19:15:55 Some people build what we will call Micro-Boards or circles of support but kind of formal structures or have a personal Board of Directors like you meet with regularly, ask questions to get advice about my life. All of these things are supported decision-making. All of them because they all do the same thing. They all involve me going to you for help, getting advice from you, getting assistance from you so I can make decisions in my life.
19:16:06 That is what Supported Decision-Making is. They can take a million different forms. In fact, I say there are only three rules of Supported Decision-Making. Three  Commandments and they are all easy.
19:16:21 We agree to these three things we are all Supported Decision-Making advocates. Number one we agree everyone has the right to make choices to the maximum of their ability. That is easy that is the Declaration of Independence.
19:16:37 Number two, I can ask you for help in exercising my rights and help in making a decision without you saying that must mean you cannot do it so you have to lose your right to do it. That is easy because we ask for help every day and no one tries to take our rights away.
19:17:05 And three we realize there are many ways to give and get help as there are people. The first way you talk about empowering someone when I worked. Try something else. Go to plan C, go to plan D, something might work. Nothing might work. If nothing works, guardianship is probably appropriate but what is the rush. Given the rights at stake, what is the rush.
19:17:18 Here's what we know from science. Remember what I told you self-determination is the key to better rights for people with disabilities. Supported Decision-Making, people who use Supported Decision-Making have higher levels of self determination.
19:17:38 That is not rocket science. If I'm using Supported Decision-Making to make more of my own decisions instead of having someone make decisions for me, I have more control over my life and what we know is life controlled decision-making, self-determination is the key to a better life for people with disabilities.
19:18:02 Just this year I published a study in Virginia we worked with 10 young adults with developmental disabilities and we empower them to use in one. We gave them options. We talked to their family, their supporters and make a plan some of the main charts, some had spreadsheets and some just told me what it was.
19:18:21 But they made a plan that works for them. We followed them for a year. We ask questions, did interviews, collected data. We talk to them, supporters in the families. Here's what we found after a year all of them that you supported decision-making all of them are more independent, more competent.
19:18:33 They were better at making decisions and they made better decisions according to the people in their life and even in the middle of a pandemic the majority said they a better quality of life because they were doing it.
19:18:54 That is what the data is showing. Your law in Rhode Island already requires it. In fact Rhode Island is one of the 13 states that has a law that specifically recognizes Supported Decision-Making. Your law says flat out the court cannot put a person in guardianship if there are less restrictive alternatives.
19:19:19 And then the court – the law says supported decision-making – Supported Decision-Making is a less restrictive alternative to guardianship. Rhode Island has been in front of the curve leading the way. Only 13 states and DC have these laws that say flat out Supported Decision-Making should be an alternative.
19:19:23 There is no one way to do it but here are guidelines if you want to try it with people.
19:19:29 First thing you should think about is what the person wants help. It all starts and ends with the person.
19:19:53 We should be thinking about what life areas the person wants help in and where that person needs or recognizes the need for assistance. It is a great tool called the The Missouri Stoplight Tool. This is one that might help you. The The Missouri Stoplight Tool is a guided interview. It's a question and answer session about typical life decisions.
19:20:27 Working, taking care of yourself, getting medications going to the doctor, arranging for transportation, managing relationships what it asks is is this something you can do. It is a stoplight tool because there is a red, yellow and green light. Red means I cannot do this at all with help even. Yellow lights means. Green light means I can do this. I don't need help. If we can do that in people's lives, we can collect enough data where people want support.
19:20:43 Or people say these are the parts of my life I want help in. Once you know where people want support the next question is how do you want to be supported. There's about a 99% chance the person has used supported decision making already.
19:21:10 That person has got advice in some way in a way that worked. Have a conversation. Do you like things in writing? Do you like time to think? Do you want someone to explain it to you? What has worked for you before? There's a resource called the Supported Decision-Making Brainstorming Guide that can help you have that conversation to think of ways that SDM can work with that person.
19:21:36 Once you know what kind of help a person wants next question, who can help? Who are the people in your life? Who are the agencies in your life? Are there programs? Like special education, vocational rehabilitation, Medicaid waiver, Centers for Independent Living. Who are professionals that can provide you help?
19:21:46 Once you have that you make a plan. You do what I call coordinated support. One of my favorite resources.
19:22:07 Suzanne is a mom and an advocate and an educator and she has three children with disabilities. And setting the wheels in motion but the first thing she talks about is her children and how she works to empower her children. How supported decision making made a change in their lives.
19:22:14 The really cool part about the guide is it has worksheets at the end, you can use them to help facilitate the conversation.
19:22:26 Who can be in my life? Who is in my life? What kind of help is there? What are my options? Can we set up a schedule? Can we work together? How do we do it?
19:22:47 Once you have that it's great to put it in writing. In fact, under Rhode Island law you must have agreements to do Supported Decision-Making. There is a form available in Rhode Island law. You can say this is my Supported Decision-Making. Just as easily you can make a power of attorney or advanced directive.
19:23:03 You can create individualized education plans, individualized plans for employment, individualized service plans. Plans for achieving self sufficiency. You can say I want help hear from this person in this way.
19:23:11 That is all supported decision making is. It's common sense. We've all done it. Is doing something you've not done before.
19:23:24 I was asked before about getting out of guardianship. In Rhode Island if you are a guardian, your job is to make decisions in the best interest of the person in the guardianship.
19:23:40 Your job is to help that person develop or regain the ability to make decisions. In other words, you should be asking what are you trying even after guardianship? What are you doing to empower the person? How can we empower this person?
19:23:53 We remember using Supported Decision-Making and having more self-determination is undeniably in people's best interest if you can make it work because self-determination leads study after study after study to a better life.
19:24:16 What we know under your law is if a person gets better at making decisions, if they pick up a skill and they learn something they have not learned before it means a guardianship is not as necessary as it was in some areas of life or maybe in all areas your job as guardian is to go to court and say I want this guardianship to change.
19:24:34 In fact, it is an obligation on the court. The court shall remove any guardianship if the person is able to make decisions. To me what that means is as a guardian your job is to use Supported Decision-Making just like the judge said in Jenny's case.
19:24:55 Your job is to help that person learn to get better at making decisions, to learn to take care of him or herself, to build their self-determination and if the person gets it, if they get to the point where they can make it happen, your job is to go to the court and say good news judge I did my job, fire me.
19:25:27 That is what we should be looking at is guardianship a waystation on a final destination. If we look at it that way, great things can happen. Jenny Hatch got to go home that day. Ryan King was right after Jenny Hatch. When they learned about Supported Decision-Making they did exactly what that person who asked the question did. They sought to end the guardianship for Supported Decision-Making. That is him leaving the courthouse with his rights back.
19:25:44 Tonya who had an accident and was in a coma and her mother on the left did the right thing while she was in the coma. When Tonya came out she wanted her rights back and the mother wanted to protect her. The same judge from Ryan's case called me in to say can you help these folks.
19:26:01 I talked with them it turned out they wanted the same thing they wanted her to be as independent as possible.
19:26:08 She was living in her car because she had a guardian out-of-state and would not get in touch with her and she had no legal right to sign a lease.
19:26:47 We walked out of court that turned the guardianship over with the supporter is empowered to work with her to help her live her best life. About a month and 1/2 ago Marie Bergum at the end of the Zoom trial but a representative per year. They were trying to force her to move from California to Ohio. Because he wanted to move. That is her there with her supporter. Her aunt. Great things are happening. 
19:27:07 13 states including Rhode Island and Washington DC to recognize Supported Decision-Making. All since Jenny. It has only been since 2014. Only 7 years since Jenny's case that people have been talking about this and we have this incredible momentum. We can do great things across the country.
19:27:35 We can do great things if we start by respecting and protecting, by expecting rights. If we do that, then everything else follows. Everything else I talk about in every other presentation will be all about how we can make this happen. How we can use supported decision making and special education, in vocational rehabilitation, money management and life planning. And I can't wait to do it with you.
19:27:49 It has been my pleasure to be here. That is my email on the screen. I will stay on to answer questions but I also think if you have questions you don't remember after the fact, email me. Reach out. We have to have these conversations.
19:27:56 If there are questions or concerns we don't know what to do we have to connect with each other so we can figure out the best way.
19:28:00 Thank you so much.  I'm happy to answer any questions.
19:28:28 >>MORNA MURRAY:  Jonathan, thank you, thank you, thank you. That was informative, interesting, and awesome. I'm going to start off with a question from the chat while people get ready if you want to ask a question. If you want to unmute yourself and turn your video on, raise your hand and we will call on you so you can.
19:29:12 There has been a couple questions about forms. I know in terms of conversations with folks in Rhode Island you mentioned that form that is in our statute. But for some reason there's a lot of thinking about what kind of form is best and especially if you're an attorney working with somebody or somebody is working with their attorney, can you comment a little bit on written forms and what people are using how holistic do we need to be about that and all that stuff?
19:29:38 >>JONATHAN MARTINIS:  The advice I would give is you have to do a form. I am not a huge forms guy. I think forms are good things.  Your law requires it so you should do it. I think a lot of people use Supported Decision-Making like we talked about informally but my advice will be because your law is so clear.
19:29:59 If you want to pursue this and want to do it, you should do a Supported Decision-Making agreement because my nightmare would be someone like Jenny defending herself by saying I do not need a guardianship because I used Supported Decision-Making and having the lawyer on the other side say no you don't you do not have a form.
19:30:36 To me that is a nightmare because of so many people use it informally. Now it's something you can do to protect yourself and also to show everyone else it is done. I don't know that society is ready to understand people with disabilities making their own decisions. Someday we will get there where people are just looked at as people but for now the form is something you can give to doctors, lawyers, shopkeepers and teachers that says yes I am making my decision and my mom, dad, brother, friend or whoever.
19:30:43 My long short answer is the law requires it and it's a good thing to do it.
19:30:51 >>MORNA MURRAY:  Connie you have your hand up you want to turn on your video?
19:30:56 >> SPEAKER:  I do not see where my video is.
19:31:02 >>MORNA MURRAY:  If you don't see it, we can hear you. OK.
19:31:21 >> SPEAKER:  At any rate, Jonathan, thank you so much. I wondered if you could comment on supported decision making in Canada. I know you practice in the US but I think some things have gone on there too?
19:31:43 >>JONATHAN MARTINIS:  Canada is ahead some of the first Supported Decision-Making laws were in Canada, British Columbia. I don't pretend on being an expert in Canadian law but some of the first studies, work and laws were in Canada. There's also supported decision-making laws and procedures in Australia and places like Bulgaria.
19:32:09 Ever since the CRPD the Convention on Rights for People with Disabilities from the United Nations a lot of countries have been implementing supported decision making plans. I cannot tell you what they all say because that is not where I practice law but I am sure they all have at their core the values that we discussed the people have the right to make decisions and get help just like everyone else.
19:32:14 >> SPEAKER:  Thank you.
19:32:45 >>JONATHAN MARTINIS:  Thank you. There is a chat that came up does DRRI have a copy of the form that Rhode Island requires? Morna, please feel free to share my slide deck with anyone who wants it. There is a slide that has the section of the law you can cut-and-paste that into Google and you can find the form. Or Google Rhode Island supported decision making form I'm sure you will find it.
19:33:11 >>MORNA MURRAY:  Thanks, Jonathan. We have the form on our website. In fact, will ask one of our attorneys to put it in the chat box. Liz just put it in there. We literally took it straight from the statute. I'm not sure we need to improve on that form. It is what it is.
19:33:32 >>JONATHAN MARTINIS:  I could not agree more. If there is a form that you know will be legally recognized, you should start there. I'm a big fan of adding details. Your form is an area of what they call additional special instructions but start with the form because you know the law recognizes it.
19:33:48 >>MORNA MURRAY:  I want to recognize Carol who says I'm energized to work with my son on Supported Decision-Making and help him have the best life possible.
19:33:52 >>JONATHAN MARTINIS:  That's the best compliment you can give me.
19:34:05 >>MORNA MURRAY:  From the Ocean State Center for Independent Living put her email in the box. Any other questions for Jonathan, now is your chance.
19:34:23 >> SPEAKER:  My name is Heidi, can you hear me? I just want to say you have been so inspiring. I wish there were more people like you. I am speaking because I am a person who is my own guardian.
19:34:41 I do not have Supported Decision-Making forms and have chose not to. I have been my own guardian for as far back as I can remember and I choose to keep it that way. I have a couple questions and I have a fear.
19:35:06 My fear is because I am my own guardian and happen to have disabilities is it going to eventually be expected that they are going to try to force people with disabilities who do not use supported decision making formally to use it formally?
19:35:31 >>JONATHAN MARTINIS:  To begin with, first, thank you I have to disagree with you there are lots of people like me and several on this call but I really appreciate you overestimating my work. There are plenty of people at Disability Rights Rhode Island who live, breathe and believe these issues I'm just happy to talk about them.
19:35:55 With your fear my answer is two parts. One I hope not and two, I don't believe so. There is nothing in the law that requires a supported decision-making. Supported decision making isn't and can't be required. The law talks about it as an alternative. The law talks about it as an option.
19:36:05 So in the same way people can choose to seek guardianship they can choose to use supported decision making or they can choose to live their lives.
19:36:23 If I am playing lawyer here I always recommend people protect themselves to the maximum extent possible to keep anyone from saying they should be in a guardianship. But I cannot imagine a time where anyone says you are forced to have supported decision making.
19:36:27 It does not work that way and the law does not say it.
19:37:10 >> SPEAKER:  I have two more questions very quickly. I promise they are quick. My two more questions are this: Have there been cases where somebody goes toward Supported Decision-Making say for instance they want somebody to have a surgery or something like that and the person does not want to have the surgery. And everybody in their network wants them to have the surgery. In those cases have there been points where that has become an issue legally, situations like that?
19:37:33 >>JONATHAN MARTINIS:  If you're asking if supporters can force you to do something you don't want to do, no, that is the point of Supported Decision-Making. The supporters do not have final decision-making authority. However, if you are asking me if people have ever sought guardianship over someone because they do not like the decisions they are making the answer is yes, pretty much every day.
19:37:55 I mean Jenny Hatch they sought guardianship because they thought she was not making good decisions. I was just involved in a case in Wyoming literally a week ago where the mom was seeking guardianship of a son because she said he needed help applying for Social Security and needed help with the doctor.
19:38:15 Those were the reasons why they sought guardianship. They did not like that he didn't listen to her with the doctor. So, yeah, if people do not like the decisions you are making the law lets them seek guardianship. There will always be law that lets people seek guardianship.
19:38:33 Whether they get it, or are successful in getting it are several other questions. The answer to your specific question is supporters cannot force you under Supported Decision-Making to do something you don't want to do. Anybody can seek guardianship over you at any time anywhere.
19:39:05 >> SPEAKER:  And I hope as part of your work and I hope there are more and more people like you coming down the pipe but as part of your work I hope that you also help to train people with disabilities to become the supported decision types of people and help people with disabilities in power and mentor others with disabilities there living similar lives because the peer to peer thing is very powerful.
19:39:32 >>JONATHAN MARTINIS:  I am involved with a program called train the trainer projects in several states. Ultimately this is about people with disabilities it has to be about people with disabilities and it should be pushed forward by people with disabilities. Anything I can do to help people take charge of their lives and help others do the same is the most basic form of what we should all be doing.
19:39:40 It is my hope that nothing about us without us isn't just for saying. It is actually the way we live.
19:39:44 >> SPEAKER:  Someday it will be.
19:39:45 >>JONATHAN MARTINIS:  Someday.
19:40:04 >>MORNA MURRAY:  Could you tell us what kind of curriculum and supports are available to prepare people with IDD to improve their Supported Decision-Making ability?
19:40:29 >>JONATHAN MARTINIS:  I think there is plenty of literature about using Supported Decision-Making. There are still several studies going on. I am part of a couple of them that are trying to develop best practices in doing Supported Decision-Making. I would think because each person is different you start with the person. You see where the person is in his or her life what they are doing and what they want to do.
19:40:43 I recommend Setting the Wheels In Motion Guide and see if it speaks to you, see if the steps help you. Preparing to use Supported Decision-Making is something I believe we do our entire lives.
19:40:55 When we do the next presentation on special education, I will be talking about exactly that starting at age 3 to be ready to use supported decision making when we need to use it.
19:41:02 >>MORNA MURRAY:  Another question. Who can seek guardianship other than families?
19:41:24 >>JONATHAN MARTINIS:  Anybody. The laws any interested person. There was a chilling documentary on Amazon called The Guardians about professional guardians in Nevada who would file guardianship over people they did not know and take charge of their lives and assets.
19:41:52 If I can get on my soapbox for a second, the problem with guardianship I always use the phrase culture. We have all been raised that it's OK. But it's what we do and every Guardian has every best interest at stake. Even though every state, including Rhode Island, requires guardians to file reports to say what they are doing to help the person. They don't always get read.
19:42:10 Another case in Wyoming we found out the guardian had not filed a report in over 12 years. The court never picked up on it. We always expect everyone has everyone's best interest at heart and it's not always true. The answer is anyone can seek guardianship over anyone else at any time.
19:42:37 >>MORNA MURRAY:  Cautionary words. I don't see any other questions. Anyone want to raise your hand or type your question into the chat box? Comments? John, you just have to unmute yourself.
19:43:33 >> SPEAKER:  Thank you, Jonathan you have helped crystallized the stuff. I want to go back to a point that you made and get your sense of how families ought to kind of proceed now that they are learning about the stuff. And that is how should people look to find people to become Supported Decision-Makers? Is it better for them to go to family first or should they be looking for friends, associates, neighbors, any experience out there in the field yet about who makes a better supported decision-maker?
19:43:55 >>JONATHAN MARTINIS:  Still research being done but I think by and large is cast a wide net. Just like in your life if your only hearing one voice you're not getting a real breadth of opinion. I always recommend to have at least a few people you trust that you can talk to.
19:44:17 That really comes down to what the person prefers. The person is building these trusted relationships. I've seen supporters be family members, friends, direct support professionals. I love when direct support professionals provide support because they see people in more places than anyone else.
19:44:40 I have seen pastors be on support teams. It really is each person has people in their lives that they trust and part of the job of every family whether it is a parent of a person with disabilities or not is to expose your children to his many different experiences and possibilities as possible.
19:45:00 I really like to preach, I know you have heard me preach that this should be as natural a process as any other maturation process. We have experiences. We make mistakes. We meet people. People come into our lives and we flow from there.
19:45:27 I am very weary of making supported decision making it into some kind of professional discipline. And by the way it terrifies me. There are places that try to get paid for it that say we have the one and only way. And I think people should be leading the way with what works well for them. I always start with the person and what he or she is comfortable with.
19:45:59 >> SPEAKER:  Just for information sake in Canada, Vancouver, British Columbia this organization called Plan Canada has really been promoting Supported Decision-Making after the Canadian law got passed because the Canadians are intentionally creating the support networks for individuals and they have learned it's a natural place to look for people to offer supported decision-making.
19:46:26 In fact, I think the Canadians have an actual formal process that people can choose to identify specific people from their networks to be those supporters but not exclusionary. Anyone else can be added to it. But I know that has been a very successful approach.
19:46:45 We here in Rhode Island, although we are not affiliated with the Canadians, we try to copy them as best we can without getting in trouble. I am really excited about the fact that more people are starting to want to go this route.
19:47:05 >>JONATHAN MARTINIS:  So am I. I was doing some work with folks in Nebraska about an hour before this webinar. What I told them was this. We are in a wonderful place right now and that Supported Decision-Making is not a weird, new and scary concept.
19:47:34 I told Nebraska if you guys pass a law tomorrow, guess what?  14 jurisdictions beat you to it so it's not like you have to break new ground. We are not over the hump yet on public acceptance. We are damn close to the top of the hump. It's a momentum issue. It's a scientific issue to me and becomes why shouldn't we try this for more than why should we try this.
19:47:55 We know it has worked and can work and if we know, like I said, the one thing standing in between having community integration and not having it may be having a guardian, why wouldn't we try Supported Decision-Making first? It might work. And if it doesn't, guardianship is always there.
19:48:16 >>MORNA MURRAY:  Two questions. I think you could probably take them together. Will having a Supported Decision-Making in place prevent guardianship being applied by third parties and are there any ways to monitor or reevaluate a supported decision-making plan put in place?
19:48:37 >>JONATHAN MARTINIS:  Having a supported decision-making plan or network does not in and of itself prevent someone from filing for guardianship. Remember the rule anyone can seek guardianship over anyone at any time. What having a Supported Decision-Making relationship will provide you with is a good defense against guardianship.
19:48:50 Remember your law is a person shall not be put into guardianship if they can use a less restrictive alternative and remember your law says that supported decision-making is a less restrictive alternative.
19:49:11 To me it would be great to be able to say to a court this person does not need a guardian because look at your law this person is using Supported Decision-Making. I can imagine the other side would say no they are not and here's evidence it is a sham but to me it provides a very strong defense especially if it's working well.
19:49:36 As to the second question about reevaluating, I think we should always reevaluate supported decision-making. People come in and out of our lives every day. Things I need help with change every day. As I get older I will need help doing things. I may master more skills and not need as much help with some things.
19:49:59 I have done powers of attorney with SDM and I specifically say we will review this minimum every year, we will take a deep dive and see if it needs to be changed. To me it is almost like an IEP in special education. You can and should review it frequently and change it when it needs to be changed.
19:50:07 >>MORNA MURRAY:  Are you aware of anything that's written for working with people whose primary language is not English?
19:50:29 >>JONATHAN MARTINIS:  There some good material in spanish at supporteddecisionmaking.org. I did training with the Korean family support group, not just people from Korea but Asians from multiple areas in Southeast Asia that had staff translate it into multiple languages.
19:50:46 I think it's worthwhile to do some Google on that. California has really good supported decision making in multiple languages. I believe you can find that at disabilityrightscalifornia.org.
19:50:53 >>MORNA MURRAY:  Any other questions?