Very few people are aware of the history and cultural background of conservatorships, also known as guardianships. In this episode we discuss that history, as well as alternatives to the legal practice, which are seldom known or talked about.
Jonathan Martinis, Esq., J.D. is the Director for Law and Policy with the Burton Blatt Institute at Syracuse University, and was part of a ground breaking case around guardianships for individuals with disabilities.
Penny Johnson of the Arc of Tennessee is the Program Coordinator for the Tennessee Center for Decision-Making Support, which is the first of its kind in the country.
Jenny Hatch Justice Project: Here
Supported Decision Making: From Justice for Jenny to Justice for All (paperback): Here
Tennessee Center for Decision-Making Support: Here
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Naveh Eldar 0:00
Before we get started today, I wanted to give a quick shout out. One of my top five episodes of all time, is quadriplegic sexuality. This is how we do it, with Middle Tennessee State teacher, Mr. Gerald Christian, speaking about his research on sexuality as leisure for individuals with quadriplegia. Well, as of a few weeks ago, Mr. Christian is now Dr. Christian, as he has successfully completed his PhD. And not only am I thrilled about this, but past guests and followers of the show helped get the word out on another research project he completed about spinal cord injury and sexuality. Perhaps I can bribe him to come back on to discuss that research in a later episode. the disability community is so supportive of one another and I'm glad this show could play a tiny tiny part and connecting Dr. Christian two subjects. So congratulations again. And now on to the episode.
Welcome to the landscape, a podcast to shed light on the people programs and businesses that are changing the landscape for individuals with any type of disability. I'm your host Naveh Eldar. Today's guests are Jonathan Martinez, who is the director for Law and Policy with the Burton Blatt Institute at Syracuse University, and he was part of a groundbreaking case around conservatorship for individuals with disabilities. My second guest is Penny Johnson of the ark of Tennessee, who is the program director for the Tennessee center for decision making support, which is the first of its kind in the nation. If you are new to the podcast, I hope you subscribe, share with friends, and leave a review on Apple podcast. Today's episode starts with Jonathan giving a glimpse into the long history and cultural impact of guardianship, which is also known as conservatorship.
Jonathan Martinis, Esq., J.D. 2:19
guardianship isn't new guardianship is something that's existed for about 1500 years. It's been around for about as long as we've really had law in the Western world. The Eastern world has the code of Hammurabi that predates anything we did by 1000s of years. But in the Western world, the very first time they ever put all the laws in one place was during the Roman Empire, an emperor named Justinian created the Justinian code. I am such a history and legal nerd, one of my sons is named Justin. But the very first time they put all the laws in one place in the Justinian code, one of those laws said that if you are feeble minded their words, you had to have a curator put over you, someone to make decisions for you, someone to take your place in society. So I would say the very first time we had rights, there was a way to take rights away from people with disabilities. And that created what I call a culture or an expectation that when a person has a disability or any type of limitations, that they can't do things. We got most of our laws from Great Britain. Well, Great Britain in the Middle Ages, updated the Justinian code, what they said is, if you are an idiot, or a lunatic, and that was their word for people with disabilities, you could either be an idiot or a lunatic. You had to have a committee put over you. And we just adopted similar laws and similar cultures. We call them guardianship or conservatorship, I know what's called conservatorship in Tennessee, most states call it guardianship. And what I always say is there's nothing wrong with guardianship, nothing. I never say that guardians are bad or the guardianship or conservatorship is bad. What I get worried about is times when we make assumptions that people need to lose their rights just because they have disabilities because the vast majority of guardianships and conservatorships over 90%. By the way, take away all of people's rights regardless of their abilities, regardless of their preferences, regardless of what they or their family, or their doctors say, judges just use what we call plenary or full conservatorship, I call those overbroad or undue guardianships and conservatorships because they take away more rights than a person should lose.
Naveh Eldar 4:46
It so what is a guardianship supposed to look like? And in a perfect world, how would they structure guardianship?
Jonathan Martinis, Esq., J.D. 4:52
They would structure it like the law says almost every state law including Tennessee's says straight up courts should only take away those rights a person truly cannot exercise. And they should only take away those rights when they've tried every other option, every less restrictive alternative it's called. So in an ideal world, what guardianship looks like is the one that my sister has over my godson. It's why I never never concerned myself and say Guardian ships are bad, because they're guardians like my sister that say, to my godson, you can't handle money very well, that's, that's the one thing you can't wrap your head around. So she handles money for my godson, he makes all the decisions with her support. That's what a guardian should look should look like. And in a real ideal world, again, what most laws say is that the Guardian is supposed to be working with the person to increase his or her abilities to become better at making decisions with the hope that that person might be able to come out of the guardianship in time.
Naveh Eldar 6:01
And in the current system, Does that ever happen? Does do people ever come out from guardianships?
Jonathan Martinis, Esq., J.D. 6:07
Well, I've gotten quite a few out actually. But in terms of like voluntarily, it rarely happens, although I'm seeing more and more younger parents, saying I want my child to be as independent as possible. But I've worked with a lot of people across the country actually one literally about two weeks ago in California, to help them get out of overbroad and undo guardianships and move toward independence. Why? Because they had learned skills, or they always always had skills. And they were fighting against that cultural assumption going back to ancient Rome, that just because you have Down syndrome or have some other disability, you can't do things, as opposed to you have some limitations. What can we do to build your strengths? or help you avoid them?
Naveh Eldar 6:55
Who is hiring you to help? Is it the the person with a disability? Is it the family, mostly, when I'm very
Jonathan Martinis, Esq., J.D. 7:01
rarely hired, I like to kid that the vast majority of times, I'm free and worth every penny. But people reach out to me, I joke that in a very, very small pond, I'm a fair to middling sized fish. So if you google supported decision making, or if you google alternatives to guardianship, and lawyers, you'll eventually find me. I'm working with a young woman in Wyoming. That's how she found me. Or friends of friends, you know, someone sees a video or hears or read something.
Naveh Eldar 7:35
Let's go back to the culture, which has been going on, like you said, for over 1000 years, because that's very important, because it touches so much that we do with the disability community, like how we view people with disabilities and employed. It was very recently that people with disabilities even had rights. So I was wondering if you could touch on that the fact that we are the land of the home in the free, but we really weren't the land of the home in a free play. My
Jonathan Martinis, Esq., J.D. 8:05
God, you're so right. I mean, think about our founding documents, I was talking about the Declaration of Independence, We hold these truths to be self evident, that all people are created equal and endowed by their creator with certain inalienable rights like life, liberty, and the pursuit of happiness. Well, that was 1776. And we have been working on getting people to count as people ever since. I mean, in 1863, where I'm sitting right now in Virginia, some people could own other people. So they weren't in the Declaration of Independence. And we fought a war over that to make sure that people are people. But in 1918, half of the population women couldn't vote, we have to have a constitutional amendment to make sure that women are people. And here's where it gets really, really disturbing. It wasn't until 1990 with the Americans with Disabilities Act, that people with disabilities were in a legal sense people because the ADA says in the very first section, that having a physical or mental limitation, in no way does or should prevent people from being full and equal members of their communities. And before then, there was no law that was so clear on it. So it took in the ADA is only 31 years old. 31 in July, it took until then, to complete what we started in 1776, that people do have rights,
Naveh Eldar 9:38
all of that history, all of that culture, all of that really poor practices, like they're not utilizing guardianships the way they're supposed to be. All of that smashed into this massive force called Jenny Hatch. So can you tell us how did all of that run into Jenny?
Jonathan Martinis, Esq., J.D. 10:00
Sure, first, a confession that before Jenny, who I'm going to tell you about, I never really thought about guardianship. I've been calling myself a disability rights attorney for a couple of decades, but never thought about guardianship white culture. We never thought about it. People just think that guardianship is kind of a rite of passage. It's what you do. It's protective. And again, I never tell people that they're wrong for thinking about it, because culture has been telling them to think about it forever. So Jenny Hatch when I met her was 29 years old. Jenny had graduated high school, she had the same job for five years, not a special or supported job, a real job, real wages, real taxes, had her own apartment, not a group home. Jenny had life like you live like everyone else, had a church. She went to had friends, she had things she did places she went, Jenny had a life until she got hit by a car while she was riding her bike. Now the car accident caused zero cognitive impairments. It hurt her back, but at 29 years old, after getting back surgery, she found herself on the receiving end of a guardianship petition filed by her mother and her stepfather. By the time I met Jenny, that was 2012. I met Jenny in 2013. Jenny had walked into a courtroom in August of 2012. With all her rights, same rights, you and I have same rights do anything they want. Three hours later, just three, she walked out with nothing. In August of 2012, Jenny walked out of that courtroom in what they call a temporary guardianship with no end date. By the time I met her, in 2013, Jenny was required to live in a group home by The Guardian, so you might live there. But she was called Get used to new life you're going to live here, she was required to work in the sheltered workshop attached to the guardianship attached to the group home pardon me by the guardians, a sheltered workshop, a place where only people with disabilities work with only other people with disabilities, earning less than minimum wage,
Naveh Eldar 11:58
the only touch is still legal.
Jonathan Martinis, Esq., J.D. 11:59
Yeah, still legal. And that's what Jenny was required to work. She was Welcome to return to her old job, she wanted to go back to her old job was told, get used to your new life, your work here now. She wanted to see her friends, she was told, get used to new life, make new friends, she wants to go to her church was told, get used to your new life. Go to we go to this church. If you wanted to see or speak with Jenny, you had to fill out a permission slip hand to God, people always look at me like I'm telling a story. So I put it online, you can go to Jenny Hatch, Justice project.org. There's a drop down on Jenny Hatch on the justice for Jenny trial, you can see exactly what I'm talking about. You had to fill out a permission slip to see her to say what you were going to say where you're going to go what you're going to do when you're gonna be back and you had to agree to the rules of the visitation. Rule number one, you're not allowed to talk to her about the guardianship. Why? Because they said it upset her. You know why it upset her? She want to be in the guardianship. Exactly. She wants to be with her friends wanted to go to her job wanted to go to a church. So by the time I met Jenny, at that time, that's what was going on. And I became one of Jenny's attorneys, I was invited in by her counsel. So I visited her. And she wanted me to be a lawyer. I became a lawyer. And I contacted the guardians, the attorney for the guardians. And I said, I'm going to be Jenny's lawyer, we're going to go to trial. Let's just do this as quickly as we can. But one question. The permission slip thing doesn't apply to me, does it? I was told Yes, it does. And I said, Wait a second. Are you saying that I can't talk to my client about my client's case? And I was told Yeah, it's now stop. back up for a second I told about the history of guardianship. But I want you to think about what that really means. If Jenny Hatch was an axe murderer, who was found holding an axe and holding a head and saying I did it, she'd have the right to talk to a lawyer. Right. But apparently, in our system, according to this attorney, the fact that Jenny was a person with disabilities under a guardianship meant she didn't have the same rights as an axe murderer. She wasn't lucky enough to be an axe murderer. So the first time I went to court was just to ask to speak with her. And again, he had Justice project.org you can see what I had to file, you can see the emails, you can see the permission slip. Long story very long story short, what we showed at Jenny's trial was that she does make decisions for herself. She makes them with the support of people she trusts. We call it supported decision making. Now I could make supported decision making sound like something really fancy I can give you a definition that's in textbooks. But here is what supported decision making as it's getting help from people you trust, to understand the things you have to understand so you can make the decisions you have to make. If that sounds familiar, it's because you do it every day, everyone you supported decision making. Think about all the cliches we have in our lives. Don't make a snap judgment, don't go off half cocked, make an informed choice, get a second opinion. My dad always said, If you only if you measure twice, then we have to cut once. It all means the same thing, get help before you do something. And that's our culture. We want people to get help, unless you're people with disabilities, right? Because our culture says if you're Jenny, if you have Down syndrome, if you don't have an IQ measured as high as as everyone else, that must mean you can't do things. So we were in court for a year, showing that Jenny makes her own decision. We had doctors, we had witnesses to say that she uses this supportive decision making and at the end of the year, and six full days of trial. After I walked around, in closing argument during my alpha Cheeto imitation and pounding the table. The judge looked at Janney and he said, essentially, again, the orders online too. He spends the first like 10 minutes saying all the reasons she needs a guardian. And we thought, well, we're gonna have to appeal this, and I had the ACLU lined up for an appeal. And then the judge said, however,
Jenny, you haven't proven to me that you can make all decisions in your life. So he kept her under guardianship for two things, health reasons and safety reasons. At that point is every other decision you are free to make on your own. Okay, good start. Then he said, the guardians are going to be the people that you want people that you want to be with, and she had people that she wanted to live with and wanted to be her guardians who came to court to fight for her. Then the judge says that guardianship ends in one year ended ended as of August 2014, Jenny Hatch's had no Guardian live in free living her life back to work, living where she wants doing what she wants to go into church, all those things. And that was the first time a judge have ever done that. A trial judge, there was one appeal case, that said to a person you should use, because the judge actually said, even when you're in guardianship, you should use supported decision making. And once you are out of guardianship, you should use supporting decision making. And the other thing that judge said that I loved was he told the New guardians to get her out of that group home and get her back to work with that switch. Nice. So I call Jenny the rock that started the avalanche because since her case, a dozen states have passed laws, recognizing supportive decision making as an alternative to guardianship. And there have been cases across the country. Like I said, I had one intent. I had one in California, I've been involved in ones in Kentucky and Missouri and New York and Washington, DC. And it's starting to become a new culture. Because it's the old culture, it's our culture, that people should be able to do things they should get help when they do things. We're just now recognizing that like Jenny Hatch, people with disabilities are people. And help is a good thing.
Naveh Eldar 17:57
You know, I've heard you speak before live. And I've heard you speak in other interviews. And when you speak I you know, you reflect on yourself. And you're like, do you realize how much we reward people for seeking help? A big example is now I live I work in the corporate world, I work for Blue Cross Blue Shield of Tennessee, and having a mentor is an extremely positive thing. Like people are like, Oh, my gosh, is so great that you have a mentor. And the main thing that I use my mentor for is how do I work this this happened? I'm upset about it. How should I react? Oh, don't do that Nava, you see what I'm saying? Like, I don't want you to get fired, doing something stupid. And so it's so true, that all of us use those supports, you know, I talked to I talked to my brother when I need advice. I talked to my wife and I need advice. And so that is something that frustrates me is how we sometimes think that the supports we give people with disabilities aren't the exact same supports we get naturally,
Jonathan Martinis, Esq., J.D. 19:03
of course, I mean, and with your job situation, I bet that's going to be on your evaluation. Does this person seek appropriate input and support? It's we reward people when people ask me a question that I work with. My first question is what research have you done? Who have you talked to about this? Because we want people to do that, again, that's our cliched world. We work in teams we collaborate, right? The difference culturally, going back again, 1500 years to Justinian is we don't give people with disabilities the same benefit of the doubt. We simply don't and people with disabilities may need different types of support than you they may not. They may need more intensive supports the new they may not, but the principle is the same. Now, that's not just my position. That is the position of the national guardianship Association, the National Guard Association website guardianship.org made up of Guardians by guardians for guardians, there is no one more invested in guardianship than the NGA, their position in a white paper, before guardianship try something else. Try supported decision making you know why it might work, it might not. If nothing works, there's no problem with guardianship. But given the rights at stake, the most fundamental rights we have and 40 years of science, by the way, that says when people with disabilities make more decisions, when they have more control over their life, they have better lives study after study after study, including one that I just finished up in Virginia, finding that people who used supported decision making were more independent, more self confident, made better decisions, got better at making decisions, and even in a pandemic had a better quality of life. Even after all those studies, were still assuming that people can't do things instead of empowering them to at least try to do things. That's not again, it's just me, that science and that's the guardianship Association. So isn't 1500 years of culture enough?
Naveh Eldar 21:11
In my last interview, I was speaking to a national subject matter expert on support employment. And we actually talked about that the lack of research, that this population is been operating on a field of what we believe and not like, what is accurate. And so I love the fact that you're doing research. Before we get into some of the, in the weeds information about support decision making, I want to read a quote, That, to me was the most powerful thing that I read about this case, which is, you said, as far as the law was concerned, Jenny had ceased to exist. And that is so powerful, like the thought or the imagery of somebody stopping literally stopping to exist so so do you do you stand by that? Is it is that not dramatic to say a statement like that?
Jonathan Martinis, Esq., J.D. 22:03
Oh, it's it's it's less dramatic than some of the other quotes I've heard. One of our experts in the case, a scholar, referred to overbroad an undue guardianship remember guardianship that aren't necessary, as a form of civil death, was his testimony, because the person does in a legal sense, cease to exist because Jenny's situation, she could not decide where she worked like everyone else, she could not decide where she lived, like everyone else, she could not decide who she saw where she went, she lost the right to vote. And Jenny was a political activist. So she had no rights left. And ultimately, as citizens of the United States, we are the sum total of our rights, if we can't decide the most basic things in our lives, someone else becomes, for all intents and purposes, us when we give a guardian, full power over our lives, than we in a legal sense, do cease to exist. And I'm terrified to think of someone like Jenny who had so such an active life losing those rights. And I'm thrilled to have played a part in her getting them back.
Naveh Eldar 23:19
Why do parents go through this process of becoming a guardian? I mean, are they up? Look, parents, all parents love their children? They're all trying to do what's best for them? Is it being recommended to them? Is it they're being pressured to do it? What What is the general reason?
Jonathan Martinis, Esq., J.D. 23:36
The answer is culture? It's what's been going on. But if you want a specific answer in a study I was part of, we did interviews of Guardians parents all across the country. And we asked what was the how, what was your first idea to get guardianship, and number one with a bullet recommendations by school personnel. We did not expect that I then in retrospect, we should have, but we were thinking lawyers or family members or friends. But number one more than any other source, educational professionals, what we've heard time and again, and what I've heard across the country, since that is, quite often a well meaning. I would think educational professional says you know, if you made guardianship plans yet, or worse, your child's going to be turning 18 next year. And you know, if you don't get guardianship, you can't come to IEP meetings, or you can't be involved in your child's life, all of which, by the way is false. But that is the institutional knowledge or the culture handed down year after year and time after time. And what's a parent to do? Being a parents hard I have 211 year olds, they're two rooms over and they are trying to wear me out and I'm going to outlast them. But that's hard. Being a parent of a child with disabilities is much harder, because you have to be the medical professional, the educational professor, you have to know about laws you have to know about support you have to know about services. So when someone you trust, like a teacher who you know, has the best interest of your child at heart says to do something, what is the parent to do? Right? So I don't blame any parent who listens to someone they trust. That's why I speak so often to parent groups just to tell them that there is an alternative, there can be other options. And I will tell you, I've had parents across the country say, no one's ever told me this. Why has no one than school? Why has no doctor Why has no counselor ever told me that guardianship isn't a fait accompli, it doesn't have to be. And again, if we looked at it that way, if we looked at self determination and independence as the default option, and we pushed for that all the way through, then the only people going to guardianships would be the ones who truly need it. And that would be you asked me an ideal system. That's an example. Of course, there are people who need guardians, but we should limit it to those who truly need it. And when we have exhausted our other options,
Naveh Eldar 26:07
you know, it's fascinating to think about that it's with this population, really, all major changes have come in the face of professionals, you know, parents refusing to listen to their therapists or to their doctors, or in specific to this, to this population, you know, my background is supported employment, and like individual placement support was research that came out of Dartmouth University, and literally said, doctors have it wrong, people with mental illness can go to work, even if they have symptoms, even if they're still using substances, like the outcomes show that you are wrong, that they cannot go back to work. And so it's just, you know, plays over and over in different areas with the disability community, which is, which is unfortunate. So it's good to have advocates like you, who again, I'm going to reiterate it, use research and facts, and instead of just gut in, what do I feel about it? So let's get a little bit into the supported decision making. I want to know literally what it looks like, like, let's say somebody makes great decisions, but they make horrible decisions when it comes to money. So what do they do if they're in support decision making? Like do they have a powwow? Do people come to their house and have coffee and talk about it? What does it look like?
Jonathan Martinis, Esq., J.D. 27:30
I'll tell I'll start by saying this, the way that you use supported decision making is much different than the way that I do. I know that for a fact, even though I've never met you, because we all make decisions, different ways. We all need help at different times. And again, people with disabilities are no different. So I did a whole book on this. But my basic point is, we should not say one size fits all, there is no one way to use supported decision making because we all use support differently. But as a general rule, here's what I do. I call them steps in supporting decision making. Step one is talk with the person is find out where the person wants or needs support. And while again, there's no one way I don't recommend any model, there are great free tools out there. One is called the Missouri stoplight tool. And you can Google that. But the Missouri stoplight tool, the ACLU has a version called when do I want support just gives up series of regular everyday decisions, getting to work making money decisions, taking care of my health, etc, etc. and gives you a few options. I could do this without help. I need help to do this, I can't do this even with help red, yellow green light, right. And if we do that kind of tool with the person and with others in the person's life, we can get a pretty good idea of where that person wants and needs help. And once you figured out what our person wants and needs help you go to step two, which is to figure out what kind of help the person wants. And again, every person is different. But there's a 98% chance that person has used supported decision making at some point in their life because they've made a decision after getting advice. So we should figure out what works. Another good tool, not the only one, but a good one called this supported decision making brainstorming tool. You can find that and many others on supported decision making.org. This is another conversation. It's just it's designed to be a guided conversation to figure out where the person has used it before or what kinds of methods work some people do really well just conversation back and forth. Some people do really well when things are reduced to writing. Some people are more abstract thinkers and want diagrams or flowcharts. We figure out what that person's decision making language is. Once we do that, the next step is really figure out who is out there that could help. There are lots of supports and services. Not just what We call natural supports friends for members. But organizations, there are Centers for Independent Living, there are disability specific organizations, there's the developmental disabilities Planning Council in Tennessee, one of my favorites, there is a protection and advocacy organization, there are so many possibilities to gather support, and then figure out who is going to give support how. And when I co wrote a tool called the setting the wheels in motion guide, all these are free. And I'm telling you about By the way, that the seven wheels in motion was written by a friend of mine, a mom, she has three children with disabilities, and starts being about how she came to realize that they can should make decisions, but then finishes but we made worksheets that can help people kind of have those conversations. Because really, it's just about where the person wants help how the person wants help when the person wants help and from home. And once you've figured that all out, you can put that in writing, you can make a plan, you can make a power of attorney, you can make a supported decision making agreement. I've worked with one young woman in Virginia, she just made a chart, she came to me she made a chart and she was so proud. She said to me, this says who I want, when I want help who I want it from and what they're going to do. That's it. I said, that is it. That's all it is. So put in the Virginia study, one person made a spreadsheet, one person dictated to me two people just said, I got this, I'll let you know how it goes. I'm not putting it in writing. All of these are supported decision making. It just comes down to working with the person to figure out where the person wants help, when, how and from whom. And we do that every day. You said before you've got people you go to for advice. My sister is a teacher, I go to her when my kids are having trouble in school days that I don't know why. I have a friend who knows about cars, I have a friend who knows about money. We all do this. It's just starts with, we break the cultural cycle of assuming people with disabilities can't. And we work with them on finding ways that they can. Last example, I'm going to give you on this I'm so sorry for blathering on and on No, no, it's important. There's things that we all don't do well, okay, I told you about cultural assumptions. But think about us realizing things that we don't do, I'm terrible at math. Terrible. You know what, I have a career that I don't do math. And I have things that I do to us things I do well, to get around the things I don't, that's supported decision making, too. And if we can assume that someone like me terrible at math, doesn't mean I can't balance a checkbook or you can't manage my money, then it's a very small, small step to saying that Jenny Hatch, and any other person with a disability, can find ways to get help and make decisions they have to make.
Naveh Eldar 33:03
So I don't want to gloss over it. I really believe in giving resources to people. And you talked about your book very briefly. But you wrote a book called from justice for Jenny to justice for all. And you wrote it in layman's terms, you didn't want it to be an academic book, you want it to be something that individuals could read, the family members can read. And I assume that you can find that book everywhere.
Jonathan Martinis, Esq., J.D. 33:27
It's on Amazon. And the one thing that you saying I feel a little embarrassed, I'm trying not to make it sound like I'm making a commercial, but the writing it in accessible language was the most important thing. In fact, initially, it was going to be written for a publisher, and they balked at using contractions. They balked at using examples and hypotheticals, because that's not the way academics talk and write. And so that's the way people talk. Right. And it was written for parents and people with disabilities and professionals, the people who have to make this work. And it's not just about guardianship, and I know we're short on time, but I'm gonna say the supported decision making is not just about guardianship, because we use support in all areas of our life. So the book talks about using support in education and employment did money management and health care, and ways that people can be empowered to work with the people in their lives to be as independent as they possibly can. Using support. That was our whole goal with this. I wrote it with Peter Blanc who was the expert in Jenny's case, to say to people that this is not some hippy trippy, ideal. There is 40 years of science backing it, but there's also common sense backing it and here are some common sense practical ways that you can use it with the people in your life.
Naveh Eldar 34:48
Last question. So the second half of this interview is going to be with some people here locally, and I know you are a consultant on the Tennessee center for decision making. What does that mean? Of course, every time you consult, it's completely different. But what did you do for the center,
Jonathan Martinis, Esq., J.D. 35:05
I worked for a couple of years and still proud to work in consult with the Developmental Disabilities Council and the protection and advocacy system, disability rights, Tennessee. And I cannot say enough about people that are Wanda Willis, and then Lauren piercey, especially with the DD Council, they've been leaders, whatever I added, was purely complimentary to their talents, their commitment, their intelligence, I like to say I just added maybe a little salt on top of the recipe, because the folks in Tennessee just really, from day one said, this is something we should be doing. What I did was I did a lot of presentations I spoke with my job was to bring the lawyers around, I spoke with some bankers, I spoke with parents, I did help them with some writing. But it was, like I said, the leaders, the people you're going to talk to, and other leaders in Tennessee were the ones who made great things happen. If I helped move it along a little bit, I'm honored. But I think the folks you're going to talk to we're going to tell a wonderful story about what they do and how they came to do it, I could not be prouder to have played a small part in it.
Naveh Eldar 36:18
Now, I'm going to bring in Penny Johnson, who works for the ark of Tennessee, and is the program coordinator for the Tennessee center for decision making supports. So I do not want to completely confused people after listening to Jonathan. So we just got done talking about supported decision making. And I need you to explain to us the difference between supported decision making and decision making supports before we even get into the rest of it.
Penny Johnson 36:49
Thank you navei. So there is a difference. And I know it can be confusing. And if you go to our website, we even make a point of explaining that to people, because we want to make sure that they do understand that difference, you will see that throughout our website, supported decision making, according to Lexa, we're using it for a website refers to the idea that someone has the right to make decisions to the full extent of their capacity as they get needed support. Basically, that's the practice of having that team around you that helps you make the decisions that can be family, friends, professionals, whoever it is that you use to help you in your decision making. And I'm sure everyone at some point or another has those key people in their life, who they go to for key things like me and my husband, we make decisions we do that decision making together, my adult kids may call me and say Hey, Mom, I got this going on. And I'll give them the advice and and they'll kind of come to me for that kind of information. That's supported decision making. For someone with a disability and may be more formal, you may have an actual agreement, you may have certain people like your family may help you make everyday decisions. You may have a professional who helps you with your job coaching, you may have another professional who does your who manages your money. And that's that team that helps them with their decision making. Decision Making support are those things you put in place to make the decisions. It's those legal documents that network that you develop. So that's like a power of attorney a conservatorship. Oh, health care directive, a will different things like that, that you put in place, along with maybe a supported decision making agreement that says this is my plan. These are the tools that I'm using to practice my decision making.
Naveh Eldar 38:31
We are going to talk about the Tennessee center for decision making support. So we're gonna talk about all those other things that you were talking about. So what is the ultimate goal of creating the center in the first place? Why Why was there a need?
Penny Johnson 38:48
Well, after several years of the tenancy counseling, developmental disabilities, the arc Tennessee and disability rights, going across the state doing different trainings, explaining to people supported decision making, and the fact that is best practice to give individuals with a disability a voice in their decision making. They've been they've done hundreds of of trainings across the state. And over the past few years, what they've identified, or there's three or four key things that they found out one being that families, they're uninformed on their options, that there are options out there, besides conservatorship, they want to know what those options are. Once they find out there are options, they find out that a lot of times families don't even know the roles of these different like a conservatorship and a conservator. So what they realized is that there really needed to be one place where people could go to and learn all that information. So that way, when they get to that point in their life or their loved ones life that they have to decide, are they going to need supported decision making or some kind of support in their decision making? What does that look like? Where can I find out what these different things are? How can I make a path or come up with a plan on what that's going to look like? So they wanted to Everything in one one location that would help walk someone through that process so that they could really understand that because a lot of it's very technical and kind of confusing.
Naveh Eldar 40:09
Is there is there a cost associated for people who come to it,
Penny Johnson 40:12
it's totally free. It is a community service to help families, individuals and professionals to get that information to help the individual make their future plans.
Naveh Eldar 40:23
And so there's all these different options for people. They're all on your website, it can be very confusing. So let's say I come to your website, because it's a website, right? It's not an actual building that people. So they come to your website, and they see all of these options, and they're just super confused. So what do they do next?
Penny Johnson 40:45
Okay, so we try to make it plain language and try to set it up in a way that it kind of walks them through the process step by step, like on the very first page, it talks about decision making in the fact that everyone makes decisions, then we go down, and we explain what is supported decision making, and what is decision making supports, because we want to make sure they understand that as they go through the website, then we go in and we tell them you know what a really good place to start. If you're not sure about your decision making ability or what areas of life you need to make a decision, then we Tom good place to start is the life course tool. It is an exploring decision making support life course tool, which was developed by the University of Missouri along with a lot of other tools that they have. And we have the that tool on our website. And then what we'd recommend they do is click on the button that says learn more about this tool and how you can use it, they can click on that button, there's a page that explains all about the tool, the fact that it's for different areas of your life, it asks a bunch of questions. And each question, you can have three choices of I can decide with no support, I need some support, I need someone to decide for me. And then it explains to them once they go through that they can use that information to go to the resources page on our website. On on the resources page, we have those same categories listed, like I can decide with no help, I need help with my decision, or I need someone to decide for me. So let's say in one area of their life, like when it comes to the everyday living and finances, they need a lot more support. And a lot of those questions they checked, I need support with my decision, they would then go to that category on the resources page, I need support with my decision and click on that. And it tells them the types of decision making supports that might apply in their circumstance. And there's a little thumbnail of information, they can click on that. And it gives them a page of information that explains it. Not in technical detail with a lot of legal jargon, just everyday common language, this is what it is. And here's where you can go to get more information.
Naveh Eldar 42:45
And if they want to talk to somebody is there somebody they can call?
Penny Johnson 42:49
Absolutely, we have a team right now, it's mostly me, who they can call at any time. Our actual hours are eight to five, Monday through Friday, however, they can email or they can call me and I will get back to them usually that day or the next day. And that way that and we can walk them through it explain anything. If they need referral someplace that's related to decision making. We can make referrals, we're there to assist them through this process.
Naveh Eldar 43:15
And then what if they get to a step of you know what this is? This is getting really complicated and or the route I want to go, I don't understand I need a lawyer. What do you do at that point in time? How do you help them then
Penny Johnson 43:28
this is a collaborative effort between the Council on development of disabilities, the arc Tennessee, and disability rights, Tennessee. So what we do is disability rights, Tennessee is our legal partner and this so for information and explaining the resources, what's available, maybe helping them with supported decision making, that's where the arc part of it comes in. But when it comes into the legal information, I can then refer them to disability rights, Tennessee, and they will go through legal information with them, give them legal counsel, if they need a lawyer to get like a power of attorney or something like that. They'll have that database that they're developing of lawyers who will assist in those areas. So they will then be able to refer them to more specific legal assistance if they need that as well.
Naveh Eldar 44:11
That portion of it at least is also free of charge to the community. Getting all the referral and information is free. Perhaps you have a five year old, and you're like wanting to explore different things, or perhaps somebody is about to leave high school, and you may like this, or perhaps you have an older parent that's going through, you know, I had this wonderful guests in the past who I quote all the time because she said we're all slowly marching toward disability. Right. And so they may have a parent who was losing some of the capacity to make decisions do you have information for like all of those stages we do
Penny Johnson 44:49
for adults like so we have the live course tool and it bases on their ability. Anyone who is an adult can fit into that. And those same things apply. We do have a separate category for mine. And that's for parents who are talking about their child is still living at home, they still parents still have the legal authority, and how these decision making supports help with that. We are actually working to develop more specific information that we're hoping we will get on specifically related to elder related disabilities, and also that transition stage. But we do have resources we can refer to specifically, if someone needs more detailed information that we don't have on our website.
Naveh Eldar 45:27
You know, you talk about adding more things from my research. This is the first center of its kind in the country. Is that correct?
Penny Johnson 45:36
As far as we know, it is I mean, there are other states that may have similar things, but not this information, the way we presented it, to make it available to anyone and in plain language, and also help guide them through the process of what understanding what it goes through.
Naveh Eldar 45:52
And I also understand this is relatively new, even here. So when did you launch the center?
Penny Johnson 45:58
Technically, our official launch date was June 15. So it is really new people. We've been kind of warning people it was coming. But the actual launch date was June 15.
Naveh Eldar 46:07
This is a gap that you saw you said that you did the sessions, you know, I believe it was from 2016. And gathering this information and seeing these gaps that people needed. Is this something that's unique to Tennessee? Is it something that we hadn't done in the past? Or is this a problem that that's far more reaching than just Tennessee?
Penny Johnson 46:27
Are you referring to the gap itself regarding leibny, but
Naveh Eldar 46:30
the gap in this information getting out to families?
Penny Johnson 46:33
It's national, actually, I mean, and the more we're into this, the more we're realizing just how much the need is there across the country, not just in Tennessee, it just so happens that the council and the arc and Disability Rights Tennessee, were so involved in it, that they wanted to find a way of filling that gap.
Naveh Eldar 46:53
Is it available to people outside of the state? What because I mean, anybody can come to your website, but could it be for people?
Penny Johnson 47:00
Sure. And we've actually had a few people call us or email us from another state because they just happened to run into it. And we do tell them that is general information, which is which is accurate. But when it comes to certain things like conservatorship law, or maybe power of attorney statutes and things like that, you really do need to look into your own state's laws, because they can vary a little bit or even supported decision making, because every state has their laws and how they interpret that. But overall, the information is generally correct, and could be across the board helpful.
Naveh Eldar 47:34
You know, something else that I was watching a webinar that you did, and you were speaking about how making decisions is a learned skill, this is something and and to be honest with the disability population, they're not given many opportunities to build or practice that skill. So is there anything in that vein as far as like, tools to to help build skills and get out? So maybe you need a conservatorship today, but if we work hard and five years, maybe you can get out from under it. Is that? Is that something that you offer?
Penny Johnson 48:07
Yes, actually, what we have each of our levels, in fact of the decision making resources, we do have a page that refers to supported decision making as it relates to that level. And the reason we have that is because the very reason you just said is that maybe someone does need a conservatorship today, or maybe they need a power of attorney today. But with practice, and with experience and exposure to life, they may grow in their decision making ability. And as they do that, then they can grow into more independence and more autonomy in their decision making. So the reason we put that on there is because we want individuals and their supporters to understand at this level, this is how you can be practicing supported decision making. Even if they do have these other technical supports in place, you can still work with them. You can coach with them, you can use some of our tools that will help them to think about decisions and how to make a decision and what that looks like in different areas of their life.
Naveh Eldar 49:04
Yeah, and you know, and to be honest, Jonathan, you know, he painted a grim picture of conservatorships. And how not over 90% of them is like total control even though you can build them to be, you know, specific in not controlling every single area. And he also talked about research that one of the biggest advocates I guess, for lack of a better word for conservatorship are educators. Now I know the educators are supposed to be neutral. But the research shows that they're not so neutral, right that they're recommending conservatorships. This is across the country, maybe not specific to Tennessee. But is there any effort to get this information into teachers hands or to educate them? Since they're so impactful in the family's life?
Penny Johnson 49:56
Yes, and you are right teachers have a tendency to win That way, from my experience of what we've been doing so far, you know, I don't believe they're doing intentionally in a negative way, I do believe it's a lack of education and understanding, just like you said, they don't understand that there's options, and that there are other ways to protect the individual, they think it's a protection factor for the parents and the individual. That being said, in the state of Tennessee, we have already met with Department of Education professionals who really very desperately want to get this in the hands of parents. In fact, we're working with them on some projects right now, to make that happen this next year, we also have our family engagement team with the arc Tennessee who has been doing conservatorship and alternatives, classes, or trainings, periodically, across the state different school districts have asked them for this training so that they can learn about these different options. Now, a lot of them had been done before the center was open. So they really couldn't show them the center. Now, that will be a part of that training. So we are trying to get out there and make it as you know, known across the state as we possibly can.
Naveh Eldar 51:01
And you know, all three of the stakeholders, the main stakeholders in the center are, you know, they have representation in every state across the country. So is there. I don't know, it may be way too early to be thinking long term. But is there a thought if this is very successful, we need to duplicate this help our partners and other states replicate this?
Penny Johnson 51:23
Yes, we are. We're already thinking that way. And honestly, hoping that how this next year since it is so new, and we are starting to re start a new fiscal year, that we will really be able to experience it and learn, you know, learn good, what worked, what didn't work and tweak that. So that hopefully next year in different conferences across the state, whether it be an art national conference, or or disability rights conference, that we can share this website so that other people can learn from it and maybe do something similar in their state.
Naveh Eldar 51:54
This is an issue that's so so much larger than what most people think about. I was talking to my daughter, who is 18. And I was telling her about this episode that I want to do. And I was asking her, do you know about conservatorships? And she was like, Oh, yeah, like Britney Spears? You know, like a lot of today's young people, this is how they relate to it. So they understand that it isn't just people that, you know, have significant intellectual disabilities. I mean, it could be there's a lot of people that can fall under this category. Who would you recommend come to your page? When at what stage? Should they come to you? And how do you outreach?
Penny Johnson 52:35
Honestly, I think anyone who needs information for themselves, or their loved one or one of their clients, or self advocates, that that may, at any time need some kind of support and decision making, that they don't think that there may be a question of their decision making ability. They could benefit from this, whether it's a mental health disability, whether it's an intellectual developmental disability, whether it's like you said, someone who's elderly, that they're starting to lose their decision making ability, this website and our resources, and our staff can be helpful in any of those areas, to help them try to go through this process and figure out what's best for them. We do not make decisions, we don't tell them which way to go, we remain totally neutral, but we share the information so that they are informed so they can make an informed choice, because that's really what the website is about is giving that individual the autonomy to make a formed choice and their their family to support that as much as they can. So pretty much anyone in those areas could benefit from it. Regarding the second part of your question, outreach, we have done a massive PR campaign when we did our launch, where we had social media, different contacts, state agencies, nonprofits and organizations that we've been working with and CEOs that we reached out to we've done, actually what we call soft launches prior to the launch, where we were warning people, hey, are not warning, telling them, hey, we've got this great website and resource coming up is going to be opening soon. And when it does, you know, we're gonna let you know and we kind of gave them like a brief view of what the website was and what would be on it. And now our with our family engagement team with the ark, they will be promoting it across the state. And then different agencies such as disability rights and other advocacy organizations also will be supporting it across the state, and we have a good collaboration with the Pathfinder, disability Pathfinder, and they also are helping get the word out for us.
Naveh Eldar 54:30
I just think that it's such important information and you know, as I was thinking about this episode, I was like, you know, I have some episodes are just like this is just good information, or we all need to educate ourselves. But like this episode just had a little bit more gravity to me, because it is so so impactful on people's lives. Have you had even before this particular Center opened as you were doing the sessions across the state, like I said, since 2016. Did you ever Come across families that were just relieved, because they didn't know that they had an option. They just like assumed, like when my, you know, when my son or daughter hits 18, I'm gonna have to become their guardian.
Penny Johnson 55:13
Well, first of all, I will say that I was doing trainings in 2016. That was other people in the field that was before I got involved in this position. But myself, since I've even started, I have I, in fact, it's almost every person I talked to that whether they call or an email, or someone, here's one of our presentations, and they ask questions on the end, though, I have at least one person who says I had did not know and thank you so much this information is so helpful to me to know that there's other options, because most parents, all parents that I know of want their loved one to have the most autonomy in their life and to have a full life and to be able to be involved and make have a choice in their life. And to know that there are options out there is relieving to end to think that you can plan for that is even better, because that way you can actually it's not you come to a crisis point, what am I going to do, you actually have time to prepare and to educate and to train that individual in their decision making in in these new stages in life.
Naveh Eldar 56:16
Storytelling is always very, very powerful. And sometimes families are nervous, I mean, like, they want the best for their loved one. And at the very root of that is safety, right? Like they they're like I need them to be safe. So I would rather err towards caution if I can keep them safe. So that's why storytelling can be very powerful. Are you guys gonna have any initiative where you tell like successful stories of people who did a less restrictive route than having a guardianship and how they flourished under that
Penny Johnson 56:49
we actually on our website, have a page, it's called our stories page. And that is what that is, it is to show people that each person is unique, and their life situation is unique. Therefore, when you're looking at decision making planning, the ideal thing to do is to look at your unique situation. Again, that's where the life course towards some of the other tools help you to define what that looks like. Because looking on the stories page, there's some individuals who are under conservatorship, and yet they practice it almost like not being under one they had their family gives supports them in the decision making, they talk about it, they make decisions. And then ultimately, together, they make that final decision. There's others who don't have a conservatorship at all. And they just totally practice supported decision making, but with their family and their and maybe professionals in their life, that team, that support team, help them to really look at decisions to make sure that they've thought of all the options and they make their decisions that way. And there's a variety of stories on there. We even have, we have like a teenager, we have a young child and how parents are thinking about their future for decision making. And we did that because we want people to again, think of it as it's my life, it's my story, and how is that gonna look for me, and if I can see how other people applied it, then maybe that'll help me figure out how it's gonna work for me too.
Naveh Eldar 58:08
Is there anything else on the website or at the center that I have missed that you would like to tell us about,
Penny Johnson 58:15
we do have a resources directory. And with that, it's off the drop down page. And that lists a variety of different disability organizations that you can contact if you need more information. At the bottom of each of the resource informations like the conservatorship page, or the supported decision making page, or the health care directive page, there's a part where you can actually if you want to know if there's a Tennessee law relating to that, you can click on that, and it'll take you to the Tennessee law. In addition, there's a part down there where it says tools, where maybe if there's a specific tool that helps with that particular decision making support, you can click on that and access the tool, we will be adding again, as we identify more what we call best practice tools that are pretty much nationally known that we really think are really good tools to support the center and the services of the center. We'll be adding those and resources to those pages as well.
Naveh Eldar 59:11
And I'm going to put a link in the description, but somebody may be listening in their car or may not be on a computer. What is the website address
Penny Johnson 59:20
tn decision? making.org.
Naveh Eldar 59:24
And if somebody doesn't have internet access, is there a way to access this information in a different way?
Penny Johnson 59:31
If they have an iPhone, they can get it on on internet through their iPhone, but they have absolutely no internet, they can call our center as 800-835-7077 extension 322 that's for long distance or it's 615-248-5878 extension 322 and that actually gets transferred to a direct line for me.
Naveh Eldar 59:57
Yeah, because you know, I'm thinking of you know, I'm over employment can First choices, which is a Medicaid program. And there is a referral process that's online to get into our program. But there's people that don't have internet access. So there's a phone number they can call in. And basically, it's somebody who's who puts in the information for you online. So I just didn't know if you had that capacity yet.
Penny Johnson 1:00:19
Someone can call in, they can email, whether they do that through their phone, or if they have someone who wants to do that for them. And we'll be glad to get back with them and get a hold of them.
Naveh Eldar 1:00:29
And I always end with some personal phone questions. And so let's get right into those. The Olympics are coming up. I'm watching the Olympic swimming trials right now. I can't get enough of it. If you watch the Olympics, do you have a favorite Olympic or Paralympic event? Why don't we start with you, Jonathan?
Jonathan Martinis, Esq., J.D. 1:00:50
in the Olympics, I'm also a swimming fan, because it just has such an amazing combination of athletic abilities. Getting way in the weeds, Katie ledecky is just such an amazing combination of strength and speed and grace, and will to get in that pool every day the way they do. And just I've known some swimmers and I know the kind of discipline that takes. And anyone, you know, Olympic Paralympic. We're all athletes, who has that kind of determination, that kind of ability to put so many different muscles to work. And think of all the things you have to do to swim. I feel the same way about things like the high jump and pole vaulting, you have to put so many muscles to work to make it happen. It's just amazing. You know, it's it's awe inspiring that people can do that many different small things. So well to do one great big thing.
Naveh Eldar 1:01:50
You know, I've seen two people live that I told people afterwards, you don't understand how gifted they are, unless you see them live. And that was LeBron James, and Katie ledecky. I mean, getting to see her swim live. I mean, she looks like a superhero when she's just standing there. And you don't get that from the television. So when she's in front of you, it's just like, Oh, my gosh, she's amazing. I've
Jonathan Martinis, Esq., J.D. 1:02:13
only seen the Bron once. And I echo what you said, Because unless you're there seeing the whole court what he sees you have no idea how smart that man is. Yeah, that man is thinking three steps ahead of everything. He's a marvelous athlete, but he's also brilliant on the word. And again, if you're just watching TV, they're zoomed in on just him. But if you're a game, you're seeing the all 10 players and he is thinking three steps ahead of all of them. So again, it's putting so many things together. That's amazing.
Naveh Eldar 1:02:43
Penny Johnson 1:02:45
I like the swimming events for summer in any swimming event doesn't matter. for winter. It's ice skating,
Naveh Eldar 1:02:51
and you're talking about the figure skating. Right, right. Oh, yeah. Yeah, Ray skate. Yeah, it's kind of boring. I like speed skating. It is like, they're going so fast. And anyway. What's his name? Apollo. Oh, no, when he used to skate, so fun to watch. But I also like, figure skating as well.
Penny Johnson 1:03:08
Cool. My one son actually was offered the chance to carry the torch. Yeah. And he did. It was very cool. We got pictures of him. We went to Elizabeth town, Kentucky, he had the whole garbage. He has it all framed now with his little pins, and all the stuff they give you is very cool.
Naveh Eldar 1:03:26
So he was part of the relay. He got the carried and running the relay. Man. I thought about doing that too. When it was when it was in Atlanta. I was like, Oh, I would love to run this relay. That is such a cool memory. It was he loves that picture, too. Yeah, they're so very nice. So thank you so much for your time. Thank you so much. I appreciate the time. Thank you. So find the links to the Tennessee center for decision making supports in the episode description. Make sure to follow the landscape on Facebook, LinkedIn, Instagram and Twitter. The Paralympic Games are soon upon us people. And in the next episode, I speak with Amy truesdale, who was the reigning World para Taekwondo champion and her weight class. She will be representing Great Britain in Taekwondo, his debut at the Paralympic Games. I'm a huge fan of Amy's and her accomplishments astonish me. We'll see you then.