• JR Reed/Shannon Hughes

Jonathan Martinis Podcast Transcript

"So supported decision making, it's a way to level the playing field. It's a way to give people with disabilities the same rights you and I have. The same rights. Everyone has the same rights we're all supposed to have as Americans from the declaration of independence to the Americans with disabilities act to the Olmstead decision and the Supreme court. We are all and should be full and equal members of society."

Jonathan Martinis

Shannon: 00:05 They both grew up as the weird kids undiagnosed and off the spectrum. Now they're adults diagnosed with Asperger's, attempting to live real lives among regular humans as kids. They were weird and not autistic. Now they're not weird. Just autistic. Join Shannon and J.R. As they make their way through life, bringing you tips, tricks and other ideas to get you through your day. Stay tuned for the Not Weird Just Autistic podcast.

J.R.: 00:31 All right, welcome to a pre Thanksgiving version of Not Weird Just Autistic! As always. My name is J.R. With me andis my co-host, the lovely Shannon Hughes.

Shannon: 00:40 Hey everybody.

J.R.: 00:42 We are lucky enough to be joined by the one and only Jonathan Martinez who argued and won a landmark disability rights case in front of the Supreme court and we're going to talk about that a little bit later. But uh, Jonathan. Hello, and why don't you tell the audience a little bit about yourself.

Jonathan: 00:59 Hi J.R.. Hi Shannon. I'm Jonathan Martinis. I'm the senior director for law and policy at the Burton Blatt Institute at Syracuse university. We specialize in working with people with disabilities to make sure they have what they need to be full and equal parts of society.

J.R.: 01:15 All right, well your specialty is supported decision making and for those who don't know what supported decision making is, can you explain a little bit about it and take all the time you need to explain it.

Jonathan: 01:28 Well you just did it. You just did. Supported decision-making. Supported decision making is just getting the information and advice you need to make the decisions you have to make. Everyone uses supported decision-making every single day. I'm even tired of it having that kind of label. Think about all the times you ever ask someone for advice. So every time you've ever asked someone to explain something to you.

Jonathan: 01:58 Yeah, exactly. Every time. Every time

Jonathan: 02:02 you ask a doctor to stop talking medical jargon and explain things in plain English. Every time you ask a friend for advice about a relationship, every time you ask anyone to help you do something, you are using supported decision making. The important thing about supported decision making is also the saddest thing about supported decision making is that when I as a neuro-typical temporarily able bodied person, ask someone for advice or ask a coworker what they would do in a situation, everyone thinks I'm smart. Everyone says that's a smart thing to do. You're not going off half cocked. You are getting the information to make an informed choice. But when people with disabilities, when they say, help me out, I don't get it. Well, for thousands of years society has said that's evidence that you can't do it. So the very things that make me look smart have been used to make people with disabilities look incapable for hundreds and even thousands of years and too often what happens is that people with disabilities who are perfectly capable of doing things and managing their life and making their own decisions need some help.

Jonathan: 03:13 They might need different help than me. They might need more help than me. They might not. They have areas where they need help just like me, but because they have disabilities and because they ask for help, society decides they can't do things and that leads to people being put into guardianship and losing all their rights. So supported decision making, it's a way to level the playing field. It's a way to give people with disabilities the same rights you and I have. The same rights. Everyone has the same rights we're all supposed to have as Americans from the declaration of independence to the Americans with disabilities act to the Olmstead decision and the Supreme court. We are all and should be full and equal members of society. Supported decision making is a way to empower people with disabilities to exercise and be respected for having those rights and to keep those rights rather than losing them in a guardianship.

Shannon: 04:08 Yeah, I totally agree. And Jonathan, I was just reading an article earlier, like right before we started this podcast on verywellhealth.com and it was titled guardianship and other options for adults with autism. It did not discuss supported decision making, but it, and there are a lot of what it said was okay, but there were a couple of quotes that I pulled out, but I wanted to just bring them up and get your thoughts on them. Like the first one was a quote. Individuals with severe autism are unlikely to feel injured because they're abstract rights as an adult have been stripped away. And then, I can go ahead and give you the other one because they're kind of along the same vein. Okay, even the brightest and best educated adults on the spectrum can fall prey to people who pose as friends make offers too good to be true or requests money is a condition for friendship. So that's their opinion of why people on the autism spectrum shouldn't be bothered by having the rights taken away and really are a danger to themselves when they have the right to make decisions.

Jonathan: 05:20 Okay. So starting out, I haven't read the article and just taking what you've said, that's more than upsetting because here's why. We've known and when I talk to audiences about supported decision making and about decision making, here's what I know is there are 40 years of studies and this is undeniable for 40 years of studies that find when people with disabilities, particularly people with intellectual developmental disabilities, when they have more control over their lives, when they have more self determination, when they make more decisions, their lives are better. Study after study after study has found that when people with disabilities have more power over their lives, they're more likely to be included in their communities. They're more likely to be employed, they're more likely to be healthier, happier and safer. So to make a general statement like that, it is upsetting. People with autism aren't bothered by losing their rights.

Jonathan: 06:22 Here's the thing, people have rights regardless of whether or not they have autism or any disability or whether they have blonde or red or black or no hair, they have rights and rights are precious. So what we should never do is generalize and say people with autism wouldn't be bothered by that. There are some people in this world who do need a guardian. A person in a coma certainly needs a guardian. But what I should, we should never do is assume that someone needs a guardian just because they have a disability just because they're on the autism spectrum. And the last point I want to make is about people getting taken advantage of. People with and without disabilities get taken advantage of every day. The standard of whether or not we should have a guardian is whether we might get a friend, mother, our friends might make us do dumb or bad things and I have to stop playing poker.

Jonathan: 07:19 I have to stop having beers with my friends because they get me to do all kinds of stupid stuff. So we can't condition our rights on just whether or not we make the best possible choices. The most logical choices. We can't do that because if we do, then we all have to look in the mirror. Because if the, if it's you only get to make decisions if you make good decisions then we all have to stop drinking beer and eating cookies. You know, where does it stop? So I would never say people with autism should have guardians because they don't mind losing their rights. What a horrible thing to say.

Shannon: 07:57 I made it a little bit, they said with very severe autism, but how do you define that?

Jonathan: 08:03 And and same point, there might be some people with quote unquote very severe autism. However we choose to define that that might need a guardian.

Jonathan: 08:13 Every single person is different. There might be, my take is don't start there. Don't start with the idea that this person needs a guardian. Try to empower them, try to use supported decision making, try to help them make their own decisions and empower their own life. For two reasons. One, rights are precious and two, we know that leads to a better life and if it doesn't work, if someone, whoever that person is for whatever reason simply cannot or does not want to take part in the decision making process. Sure, guardianship might be appropriate. But to start there is to say that people shouldn't have rights and that's very upsetting.

Shannon: 08:55 Yeah. I especially love that it said unlikely to feel injured. How did they know?

Jonathan: 09:01 I presented far too many people who know exactly what they lost.

Shannon: 09:05 Yeah, I'm sure.

J.R.: 09:08 Well, you know, when you came and spoke to us at Missouri partners in policymaking, and I have to say that you were one of the most engaging speakers we had in all, all of our eight months. And I just loved your presentation and if I remember correctly, kind of what got you into, being interested in disability and disability rights was your uncle Bob. So can you tell everybody the story about uncle Bob?

Jonathan: 09:34 Yeah. You know, I don't have an aha moment of when I became interested in disability rights. It's not like I suddenly saw or heard something. What happened was my grandfather had a son who was my uncle Robert. And I've only learned the details of the story fairly recently, so it still affects me. But when uncle Bob was born, my mom says my, my, my grandfather was told he'll never walk, he'll never talk. And a nurse said, we can leave them by the window and nature will take its course. And my grandfather runs and gets a pediatrician of course. And after a while the pediatrician says to my, my grandfather, he'll never walk, he'll never talk. There are places for people like him, he'll be well taken care of. He'll be fed, he'll be clothed then bathed. You never have to see him and nature will someday take its course.

Jonathan: 10:27 Don't worry. So my grandfather puts an addition on his house, puts a ramp on his house in like the 1950s or sixties no one ever seen a ramp before. Grandpa fights to get uncle Bob educated. So even though he could not speak and had spasms, he could use a letter board and communicate and could tell jokes. So I grew up with uncle Bob. Uncle Bob was every, every holiday there is uncle Bob at the table. There was uncle Bob, you know, going to Knick games and having a good life, being a person. It doesn't matter that he couldn't walk or couldn't talk. He was uncle Bob. So there he is at the table. You know in the 80s and the early nineties et cetera, and then here we are and it's 2019 it is 29 years after the ADA was passed and literally and figuratively, people with disabilities still aren't at the table.

Jonathan: 11:22 There's people aren't having the same opportunities that my uncle Bob had in the 60s and that's still, to me that's a form of bullying because my grandfather proved it can be done at a time when we didn't even think about disability rights. They proved that my uncle could have the right to be educated and have schooling before the individuals with disabilities education act, so it can be done. Why aren't we doing it? And this is really the only law I've ever wanted to practice because how dare again, the neuro-typical is the temporarily able bodies. Whoever decide that the people like my uncle Bob, the people with disabilities don't have the same rights as everyone else or shouldn't have the same opportunities as everyone else.

Shannon: 12:10 Yeah. I think also like when it comes to the ADA, we've got sort of a separate but equal thing going on. You know, people with disabilities, they can get their accommodations, but half the time the accessible entrance is on the back of the building. For kids that want to take that need extended time on tests, they have to take their tests away from the other students. There even though we're providing things for people with disabilities, I don't think we're really including them and, considering them equals and, I think that kind of contributes to the idea that they are somehow less than or unqualified to be participants in society because we are segregating them already.

Jonathan: 12:58 You know, I call that the we're trying defense and that one makes me even madder. I did lots and lots of ADA work, in my life. Everything from accessible entrances like you talked about to things like the ADA's accessibility requirements. So I know that a door has to be 32 inches wide and a ramp has to have a one to 12 slope, et cetera, et cetera, et cetera. But what I would hear time and time again from everyone, from a mom and pop store to a government agency is that they were trying to comply with the ADA and therefore we shouldn't be, I guess aggressively telling them they need to comply with the ADA. Give us a break. We're trying as if the ADA is some kind of charity, you know, like it's okay to try. And the answer I always give, and I think I've said this in court, was if I was standing in a courtroom having been pulled over for speeding, doing 95 on the interstate because I have a convertible, could I defend myself by saying, Hey, I was trying to do the speed limit but it's a beautiful day and I have a convertible.

Shannon: 14:03 Of course not. So why should anyone be able to say, we'd love to put in a ramp and we're trying but we didn't have it. Or, you know, the assessable entrance is in the back or take your test away from other kids. I had a case where the department of education in Virginia wouldn't let a young student use the technology she'd been using all year that was in her IEP, wouldn't let her use it on the state exams. They were trying to be accessible. They were trying to be accessible. They would let her use a completely different computer. They were trying to try. Trying isn't good enough. I said it before. Rights are rights and they are precious and we must do more than try.

J.R.: 14:48 Well, as I mentioned earlier, Jonathan, you argued a landmark case in front of the Supreme court. So can you tell us a little bit about the Jenny Hatch story?

Jonathan: 14:58 I can, but first I have to correct you. It wasn't the U S Supreme. I would, I would love to say that it was, don't apologize. You paid me a compliment. Thank you.

J.R.: 15:09 Well, no, no, no. But that that then takes away my next question is, which was, what was it like to argue in front of the notorious RBG?

Jonathan: 15:17 Uh, you know, I wish I knew, on the other, on the other hand, I'm happy that, I don't know, because we didn't have to go to the Supreme court. We won it at a lower court. What happened was I represented the young woman named Jenny hatch and I'll try to keep this as short as possible though it affects me emotionally. Also, Jenny was a 29 year old woman. She had downs syndrome, but to the person Jenny had graduated high school, Jenny had a job, not a special job, not a supportive job, regular job, paying regular wages, paying regular taxes. Jenny had an apartment. Not a group home, not a supported apartment, her own place with a roommate. Jenny had a life like everyone else, friends, she had volunteered in the community. She had a church she went to. I mean, it was fine. Jenny had a life like everyone else and that's all she wanted.

Jonathan: 16:02 And then one day, um, she got hit by a car. She's riding her bike and she got hit by a car and she had to have surgery. And at 29 years old, after doing all these things, her, her mom and her stepfather moved for guardianship of her. And because guardianship is considered this in many places to regular Rite of passage, this is what happens. Like the article Shannon read, she found herself after three hours in court, she walked into court with all her rights. Three hours later she walked out with none of them. She was put into a group home where she didn't want to live. She was made to work in a sheltered workshop, paying pennies on the hour where she didn't want to work. She wasn't allowed to see her friends. She wasn't allowed to go to a church. She was told get used to your new life. When I met her

J.R.: 16:44 by her parents,

Jonathan: 16:47 uh, I'm sorry,

J.R.: 16:47 by her parents,

Jonathan: 16:49 her parents moved for guardianship.

J.R.: 16:51 Oh no. She was told all these things by her parents

Jonathan: 16:55 initially by a court appointed guardian. But yes, her parents became the guardian after that and yes, kept the, kept those going. In fact, the scariest part about this is if you wanted to see Jenny, you had to fill out a permission slip. I mean literally a permission slip. And people never believe me when I say this, so I always say go to JennyHatchjusticeproject.org and there's a section on Jenny, there's a section that's called the Justice For Jenny trial and I put it online. You can see the permission slip that you had to fill out to see Jenny. You had to say when you're going to see her, what you were going to talk to you about for how long. And you had to agree to the rules of visitation, which are on the back of the form, one of which was you weren't allowed to talk to her about the guardianship because it upset her.

Jonathan: 17:38 You know why? You know why it upset her to talk about the guardianship? Cause she didn't want to be in guardianship. She was told, I want to see my friends. She was told to get used to your new life. She says, I want to go to work, get used to a new life, et cetera. So by the time I got involved in the case, like six months after the original guardianship. Yeah, we had to argue, I had to go to court. The motion is in that website I gave you where I had to go to court to ask the court for permission to let me talk to Jenny about her case. Now think about that. I told you before, you can lose your rights in a guardianship, but maybe it didn't sink in fully to the people listening to this and that is, Jenny, according to the guardians, didn't have the right to talk to her lawyer about her case.

Jonathan: 18:22 Now think about if Jenny was not a person with disabilities but was instead an ax murderer, you know, is found with a head and an ax and saying she did it. You know what, she'd have the right to do? Talk to an attorney. But the position taken was Jenny didn't have the same rights as an ax murderer. So we literally had to ask the court for me to get permission to even talk to her about her case. And you know, we got it, but we had to do, took a year. The really long story short is that we showed the court that Jenny uses supported decision making like everyone else. We showed her how Jenny had used support to do things like complete her person centered plan and everyone said her case manager said they explain the form to Jenny, let Jenny ask questions and she understood it so she could sign it.

Jonathan: 19:07 She had signed the power of attorney some years before and we said to the parents, if you don't think she can make decisions, how did she sign this power of attorney? And they said, we've, we worked with a lawyer and the lawyer gave her the chance to ask questions and explained it and the lawyer felt that when it was explained to Jenny, she was understood it and could sign it. And at trial, they said their doctor said that Jenny could understand that if it was explained to her. So time and time again, what we saw and what we heard was that when Jenny got support like everyone else, she could make decisions like everyone else. So if you can use, if you can use support like everyone else to make decisions like everyone else, why the hell do you need the guardian? And ultimately that's what the court found.

Jonathan: 19:53 Ultimately the court found that Jenny, uh, was going to, in its words, transition to the supported decision making model. The court freed her to get out of that group home and go live with the people she wanted to live with. And for a year, the people she wanted to live with were given very limited guardianship powers to help Jenny develop her skills. And then Jenny has had no guardian has been living free and clear and having a life of her own just like before. Ever since August of 2014, Jenny has no guardian. Jenny makes her own decisions. Jenny works. Jenny has a life. Jenny speaks frequently, uh, publicly with me and others who've spoken at that several events. She has a life again, like everyone else. You know, why? She has her rights again.

J.R.: 20:38 That's right. And if I remember correctly, Jenny had this before the accident. Jenny had the same job for five years and after the guardianship was taken away, went back to that same job. Is that correct?

Jonathan: 20:48 That's absolutely correct. That's absolutely correct. In fact, um, not to get too deep into the weeds, but the people she wanted to live with were her employers, she worked for him for five years and when she got out of the hospital, she couldn't go back to her apartment. She needed to rehab and, and I have no problem saying this because it's in the court record. Her parents would not take her in. They would not let Jenny move in with them. So you know what happened? Her employer's name is Jim Talbert. Kelly Morris can't say their names, enough said, live with us, live with us, you know, we will support you, we will empower you. And that's exactly what they did and what they've been doing. So yeah, it's a sign of what can happen when we think broadly and don't assume things about people's abilities.

Shannon: 21:31 Yeah, I was just thinking about like, you know, how do you decide that somebody is capable of making a decision? Because one thing that's really important to me as somebody with, with a variety of mental illnesses including very severe depression is the idea that, I could go to an ER and even if I didn't want it, you know, they could just revoke my civil rights for 72 hours and I wouldn't be able to do anything about it, Even my family wouldn't be able to do anything about it. And I was like reading an article on like assessing whether or not somebody has decision making capacity in like emergent situations. But one of the requirements is that people be able to communicate a clear and consistent choice. And for people on the spectrum, I think that's really, really hard.

Shannon: 22:23 Sometimes if they're in a high stress situation. Like if I'm under enough stress, sometimes I'll have difficulties with speaking. Bright lights, lots of movement, chaos. Which is what you encounter in an ER can keep someone on the spectrum from being able to communicate clearly but not keep them from being able to make decisions. And I think, like if there were somebody who was deaf and couldn't communicate verbally, we wouldn't question their ability to make informed decisions. we'd give them something to write on or we give them, get an interpreter for them. But I think actually I'd like J.R. To weigh in on this cause he had had an experience.

J.R.: 23:03 Yeah. Short version of the story is that I was sharing office space with my brother. The printer was near his desk. I was having a really bad day and I walked over to the printer to get something. And in a half joking way, I just kind of mentioned to my brother that, you know, these are the kind of days when I understand why people put guns to their heads. 10 minutes later in my 10 by 10 office, I had 15 police and firemen that were there. They, put me into a huge panic attack, put me on a stretcher, 22 hours in the ER and in the psych ward before I saw a doctor and 30 later I was released with him saying, you don't belong here. Go home.

Shannon: 23:50 Yeah. But that was 22 hours.

Jonathan: 23:53 All I can say is I wish that was a rare story, but it's not. And Shannon, you know what, what you said about a deaf person also I wish was true. I've sued enough hospitals that didn't provide interpreters for people. And there was one case I had some years ago that's strikingly similar to what J.R. talked about. Imagine J.R. everything you went through except you're deaf and no one will even tell you why you're there.

Shannon: 24:19 Oh God.

Jonathan: 24:19 So, but Shannon, yours, what your talking about is, is very, very true. So there's two things I want to stress. First, I hate the word capacity because one, it's always defined in state laws as being capable. They use the same word to define the word. So no one really knows what it means. But what we know instinctually, and you hit the nail on the head with this is that capacity fluctuates moment to moment, day to day.

Jonathan: 24:49 There are days when I am more capable than others. My standard joke is my capacity is dependent upon how many hours of sleep I got and how many diet Cokes I've had because there are days when I am so tired I can't think straight. There are some days I am so stressed out. I will say this is not a day for me to make that decision. Now if it's a day when I should not be making major decisions, does that mean I can't make decisions or does me recognizing that this is not my day show that I actually am making smart and good decisions and that you know, I'm understanding where I am cyclically if you will and we see this time and time again for people, particularly people on the autism spectrum and people with mental illness. That's the most you know the most common one I've heard, the story that you've told is that there's some days or some situations where I'm not going to be able to be functional depending upon that day, loud noises, people running around stressful situations.

Jonathan: 25:54 So here's the one thing that a good friend of mine did and I want to use her name. Her name is Laurie hallmark. She works with legal aid in Texas. She has developed, what she calls the compass model. Some people call it a psychiatric advanced directive or a power of attorney. What it is, she works often with people with disabilities including severe mental illness and she works with them to basically put in paper and in writing what their preferences are, what they react well to, what shouldn't be done, what should be done if they're in a crisis situation. It's basically creating a guide book to that person. For example, if I'm in crisis, don't approach me aggressively or if I am in crisis, it calms me down to give me an opportunity to write or to draw or I do react well to this medication.

Jonathan: 26:47 I do not react well to that medication. And once that's completed, it is shared with emergency services, with law enforcement, with local medical facilities so that they're on notice that if it's a time when I'm not at my best, when I am in a situation where I'm not able to make those decisions, they know what my decisions are ahead of time. You know, I never consent to halidol, I never consent to a true or convulsive therapy. I want you to call this person because he or she is my main supporter and can help me communicate with you. That's evidence that you do have capacity, that you are making a clear and consistent decision. You just might need some help to do it depending upon the situation.

J.R.: 27:34 Yeah. Well Jonathan, we got about eight minutes left and there's three things that I still want to get to. First off your extremely comprehensive book. Yeah. Let's talk a little bit about that.

Jonathan: 27:46 Sure. Thank you. The book is called Supported Decision Making From Justice for Jenny to Justice for all. It's available on Amazon. In fact, I published it on Amazon specifically to keep the price low. When we worked with a publisher at one point they wanted to charge people 60 70 bucks and I've seen textbooks for 80 90 dollars. We wanted to write a book that would help people understand supported decision making and learn how to make it happen, to use it at a in a way that people who need it could get their hands on it. So instead of 90, 80 whatever bucks, it's $9 in Kindle in $19 in paperback. But what the book does is it first talks about what self determination and supported decision making is. All those things I told you about it can lead to a better life. And we have studies, it tells Jenny's story including excerpts from her trial.

Jonathan: 28:38 So you can see the things I'm talking about are not things I am making up. We have a, Jenny wrote the foreword to the book. It's one of the first things you'll see about her experiences with supported decision making. But the bulk of the book is designed to help people understand how they can use supported decision making in their lives and in the programs that we all work with every day. So there is an entire chapter on using supported decision making in education an entire chapter on using supported decision making in work situations, in using it in healthcare situations, using supported decision making to manage money. So all the things, all the old stereotypes about people with disabilities, they can't do this. So how can they do that in all those horrible stereotypes we show you how we can, you can use the support that we all need every day to use SDM to use supported decision making in your life to make it effective for you in the ways that you do it. Cause there's no one way to use supported decision making. It's what works best for you. It's getting the help that you need. But we'll give you a model forms, model language you can use, things you can ask, things you can explore so that you can implement this in your life. If you're a person with disabilities, if you are a family member, if you are a professional, this is basically a guidebook on ways that you can help yourself become independent and help others be more independent.

J.R.: 30:13 All right. Well, and you've got a new Facebook group that has something to do with the book.

Jonathan: 30:19 Not my idea either. A Facebook friend of mine forme