HOLLY CEASAR: I know we're starting in a couple minutes, so I'll be quiet for a bit. I'm going to turn my mute on for the meantime.
Well, it's 2:00. We'll get started shortly. I'm going to give it a couple more minutes for people to join us.
KARL BELANGER: And as we are about to get started, I would request that all attendees make sure your microphones are muted and also that your camera is off to aid our interpreters and those who need their services to be able to find the video feeds. Thank you.
MORGAN WHITLATCH: Welcome to those who have joined us. We'll be getting started in a minute or two. Well, it looks like our participant numbers are kind of holding steady right now, so I think we're going to get started. Welcome, everybody. My name is Morgan Whitlatch. I'm the legal director at Quality Trust for Individuals with Disabilities. I'm also the lead project director for the National Resource Center for Supported Decision-Making. But I'm here today purely with my Quality Trust hat on. I want to thank you for joining us today to talk about Quality Trust's Jenny Hatch Justice Project. It is a partnership with self-advocates from Project ACTION! And it focuses on promoting people with disabilities’ right to make choices. Today you will be looking at ways in which this project has been advancing supported decision-making for people with developmental disabilities. And I'm joined today by Holly Ceasar, who is Quality Trust's Jenny Hatch Justice Project staff attorney, and Leonard Stevens, who is project coordinate at Project ACTION! And you'll be hearing about Project ACTION! Shortly. To get some housekeeping out of the ways please keep yourself on mute with the camera line off. You'll have the ability to submit text questions to us by typing your question into the chat or the question panel. We will collect those and address them during the Q&A session at the end of today's presentation. But we will be leaving room for questions.
With that, let's go ahead and get started. So, first off, I wanted to introduce you to the organization that I and Holly work for, it's called Quality Trust for Individuals with Disabilities, and this slide provides a bulleted summary of the work of my office, and it has a blue and white Quality Trust logo on it. Quality Trust is an independent advocacy and monitoring organization. We were created in 2001 as a result of a settlement of a class-action that closed Force Haven, a residential facility for individuals with developmental disabilities. Our organization is deeply rooted in promoting rights and decision-making support that maximizes people's self-determination. In 2013, we created the Jenny Hatch Justice Project, which is what we're talking about today, and you can learn more about that project by visiting www.jennyhatchjusticeproject.org. Since that, we've expanded the legal recognition beyond Jenny's case through systemic and training initiatives, which we'll talk about as well. And in 2014, Quality Trust received from federal funding from the U.S. Administration for Independent Living to support the National Resource Center for Supported Decision-Making, and you can learn more about supported decision-making by visiting www.supporteddecisionmaking.org. Leonard, do you want to introduce yourself?
LEONARD STEVENS: Okay, I'm Leonard Stevens and I'm a Project ACTION! Advisor and consultant. We're an organization of consultants from the District of Columbia and Maryland and Virginia, and ACTION stands for advocacy, change, organization, information, and organizing, and even recognizing. Our mottos are let our voices be heard, and nothing about us without us.
MORGAN WHITLATCH: You said it, and this slide also includes a logo of Project ACTION! Which is a microphone with the slogan "let our voices be heard". So let's talk about what we'll be talking about today. This slide has an image of a to-do list with all the items checked off in blue marker, which is what we want for our session today, to check off all the items and have a good question and answer session. So we want to talk about supported decision-making, what it is, why it's important, and how it works. And we want to talk about Jenny Hatch and how it's implemented a multimodal approach to supported decision-making, including public services, education initiatives, system and law reform initiatives, and publications. Finally, we'll share an update on U.S. trends in supported decision-making so you can leave here with an overall broad view of the state of the states. Now I'll turn to holly to get us starred. Do you want to introduce yourself?
HOLLY CEASAR: Hi, everyone, I'm Holly Ceasar and I'm Jenny Hatch Justice Project attorney, this is my very first time being here, and it is a privilege to be here. We'll be talking about Leonard for a little bit about supported decision-making, so we're going to be jumping right into it to talk about what supported decision-making is, and to hear from Leonard's perspective as well. Leonard, in your own words, how would you define supported decision-making?
LEONARD STEVENS: First, it's about having an adult with an intellectual or physical disability who can make their own decision and be independent without depending on anyone, to understand the issues and the choices they make, to receive information about the issue in language that he or she can understand. Or communicate his or her own right. For us to comprehend.
HOLLY CEASAR: Absolutely, that was a terrific explanation, and you are so right, there are so maybe ways that you can have someone you trust to help you, and when you pick that person to help support you in your decisions, it is so important that they can help answer your questions and help you understand it in the ways that works for you. That was phenomenal, that was absolutely a very good way to frame it. When it comes to this, it's so important to be thinking about the ways that someone could help support somebody else, and this slide here is a common definition of supported decision-making. But we think people who use it say it best. And supported decision-making are supports and services that help an adult with a disability make his or her own decisions by using friends, family members, and other people he or she trusts. Their supporters help them understand the issues and choices. They help them ask questions and receive explanations in a language he or she understands, and communicate his or her own decisions to others. And let's face it. All of us, regardless of whether we identify as living with a disability, use supported decision-making. None of us make decisions in a vacuum. In addition to the definition that I shared, this slide also includes lot of different people's hands stacked together as a team. None of us make decisions in a vacuum. We all ask for explanations and advice from people we trust. Next slide, please.
So now, let's turn to the why. So the why of supported decision-making. Why are we promoting this culture shift? Leonard, I wanted to ask you a little bit about this. Why is it important to you to make your own decisions?
LEONARD STEVENS: Just remember the old saying, you're in control of your own destiny, because you're in the driver's seat and the conductor, about any decision that you make, it's going to be the best one, or it could be the right one or the wrong one.
HOLLY CEASAR: Absolutely. And when you feel like you're in that conductor's seat and you're the one driving that train, how does it make you feel to make your own decisions?
LEONARD STEVENS: It depends on the person's demeanor and body language, based on what's best for me and what's best for them.
HOLLY CEASAR: Absolutely. And when you're making a decision, does it make you feel positively, does it make you feel good or bad? How does it make you feel? Tell me more about that.
LEONARD STEVENS: It makes me feel a lot better, so I can have more independence and more freedom without being handcuffed to anybody regardless of what my disability or anything else for that matter. You can be anywhere in the community and have a healthier lifestyle and a healthier career.
HOLLY CEASAR: Wow, yeah, thank you for sharing that. You're right, it comes down to independence and feelings of self-determination, and I think what you said was really really powerful. You used this analogy of being handcuffed. What do you mean by that?
LEONARD STEVENS: Someone tells you do this, and that's what, based on a control freak does, they make decisions for you that you don't want to make, and that's the issue that I have with me for my entire life.
HOLLY CEASAR: Wow, well, thank you for sharing that. I think that really is powerful and resonates, and hearing you say that, about feeling handcuffed, is something that, that's a really strong thing to say, so I appreciate you saying that and being open about that. You know, it comes down to self-determination, life control, and people's ability and opportunity to be causal agents in their own lives, actors in their own lives instead of being acted upon. And studies have shown that people were disabilities who have greater self-determination in their own lives are more independent, more integrated into the communities, and they're healthier, not only psychologically, but also physically healthier, and they're better able to recognize and resist abuse. That is why this slide includes an image of a blue arrow pointing upwards: Self-determination leads to better life outcomes. And this slide also includes citations to some of the research that's been done on this topic. The full citations of which are included in the last three slides of the PowerPoint. Next slide, please.
Leonard, I want to talk a little bit more about you and your experiences. Leonard, on the flip side, how does it make you feel when people make decisions for you? Tell me a little bit more about that.
LEONARD STEVENS: Well, it makes me feel a lot better, considering that every time I make good decisions, it's going to come out to be positive or negative, depending on how everyone can work with me, to understand where I'm coming from. Because when I get denied self-determination, I feel, like I said, handcuffed to the point that I gotta deal with a control freak, and I actually experience lower esteem because I have anxiety issues—that has been my platform for almost a decade now. Not just from adulthood, but even throughout my teenage and childhood.
HOLLY CEASAR: Absolutely, it's a lot to work through that, and having someone help support you is always really helpful, especially going through that. And you're right, when people do make decisions for you, it does feel restrictive, like you could be having handcuffs, not being able to have control over your own decisions, so thank you for sharing that. It's really interesting, because studies have shown that when people are denied self-determination, people can feel helpless, they can feel hopeless and self-critical. They can experience low self-esteem, passivity, and feelings of inadequacy and incompetency, decreasing their ability to function. An overbroad or undue guardianship can cause a significant negative impact on physical and mental health, longevity, ability to function, and reports of subjective well-being. That is why this slide includes a blue arrow pointing downward. It's exactly what you said, Leonard, it's not just impacting life in the big scope. It also affects you here. It's something where it really impacts the way people feel, and how one would feel about their own life. So thank you for sharing that. And as we mentioned before, the citations for this are all included on the last three slides, so keep that in mind if you'd like to review any of this evidence or any of the studies on this.
Next slide, please. Thank you.
So the why of supported decision-making is also supported by the National Core Indicator data, which are the results of surveys across publicly-funded systems supporting people with developmental disabilities. An analysis of such data has found that people with intellectual and developmental disabilities who do not have a guardian are more likely—they are MORE likely to live in their own homes or apartments, be included in the community, have their rights respected, have community jobs or service plans with that goal, be supported to communicate with friends, go on dates and marry, and be involved in making choices about their own lives. That data bolsters the idea of helping people with disabilities build diverse networks to support them in making their own decisions. That concept is reflected on this slide by the inclusion of an image of different color strings coming together to form a net.
Next slide, please.
Now let's talk about a really big question. Let's talk about the how of supported decision-making. There is no one size fits all method for supported decision-making. There is not. There is NOT a one size fits all method. It looks different for different people in different support networks. It is a paradigm, it is not a process, it is not a program. It means working with a person to identify where help is needed and finding a way to provide that help so that person can make their own decisions. And a key question is, and I want this to really digest with everyone, the key question is, what will it take? What will it take? As supporters, we should all challenge ourselves. So if we have difficulty communicating with someone or explaining the decision to be made, we should NOT automatically assume the person with a disability cannot make the decision. Rather, we need to ask ourselves a question: We need to ask ourselves, what am I doing wrong? What can I do differently? It is about challenging the culture of the way in which support has been traditionally provided to people with disabilities. That is why there is a visual image on this slide that says "change the culture". Leonard, I'd love to talk to you again and hear more from you, so I want to talk to you a little bit more about supported decision-making. Who is someone in your life that helps you with important decisions?
LEONARD STEVENS: That would be my grandmother.
HOLLY CEASAR: Your grandma.
LEONARD STEVENS: Because she helps me a lot with things, and she fought for me for all my entire life. Right from being an infant all the way to my adulthood. And it's a problem I've had to deal with with RSA for almost, ever since I was in high school, before entering college. That was the denial of rights like such as transportation, getting lunch, and even accessible things that I needed to form my independence. And that has been my issue almost my entire adulthood up until I got—it's based on dealing with that IP that I have to work on.
HOLLY CEASAR: Yeah, that's terrific, and it's wonderful to have someone in your life that you trust and to help you with that, and it's really interesting, so, you were saying that she helped you get some support and services. How did she help you do that?
LEONARD STEVENS: She's been an advocate. She's been an advocate for me for almost my entire life, not just with disability services, but almost part of the family.
HOLLY CEASAR: Absolutely, she is family, and she helps because she wants the best for you. How does she help you make decisions?
LEONARD STEVENS: Well, she trained me how to do that as a kid. How to spell, how to write, and how to do everything that might be beneficial in the real world.
HOLLY CEASAR: Absolutely, so it's good that she was able to give you support, because those types of things are really helpful. Being able to write and to spell can help you, especially if you're going to the doctor's appointment and you want to take some notes and learn how to be able to advocate for yourself at the doctor. Does your grandma help you at the doctor's appointments?
LEONARD STEVENS: Actually, my doctors maybe do it for me.
HOLLY CEASAR: Yeah, that's interesting. Tell me more about that. How do you advocate for yourself at the doctor's appointments.
LEONARD STEVENS: I tell them about my mental health and my physical health, because I have severe anxiety issues, as well as having depression, and even iron deficiency anemia.
HOLLY CEASAR: That's good that you're able to be so open about all that at your doctor's and be able to talk about that. When you're at your doctor's appointments and you're advocating for yourself, how did you learn how to advocate for yourself?
LEONARD STEVENS: I had to speak for my own self and not rely on anybody.
HOLLY CEASAR: Yeah, and you learned that skill with practice and with time? Did your grandma help you learn how to advocate so well for yourself?
LEONARD STEVENS: She did, and that's why I entered the advocacy and partnership group in 2018 as an alumni.
HOLLY CEASAR: That's when you joined it, you said?
LEONARD STEVENS: Yes.
HOLLY CEASAR: Thank you for sharing that. You've been doing that for a couple years to help people along the way and share your experiences, which is nice to be able to do that. I'd love to ask you a little bit more in terms of supported decision-making and your wonderful grandma's support. Does she help you at all with making any decisions about money?
LEONARD STEVENS: Well, she's helped me learn how to save my money, because once she's no longer with me, around me, I can make my own financial decisions about how to spend things widely and not spend all my money on anything.
MORGAN WHITLATCH: Leonard, so I think budgeting is really important and it's something I had to learn how to do too. Are there ways that she, did she early on kind of help you learn how to manage your money?
LEONARD STEVENS: She does, and it all started when I graduated from high school.
MORGAN WHITLATCH: Really? What did she do?
LEONARD STEVENS: Well, she helped me set up a bank account. When I was doing the summer youth program.
MORGAN WHITLATCH: That's great, because the summer youth program is a program where you were working, right, and you were earning money?
LEONARD STEVENS: Yes.
MORGAN WHITLATCH: So she kind of started that process with you early so you learned how to do it?
LEONARD STEVENS: Yes.
MORGAN WHITLATCH: That's terrific, that's terrific.
So one of the things I get a lot of questions about is the financial piece of supported decision-making. I think a lot of times, you know, health care has been focused on and those kinds of issues, which are all very important, but supported decision-making can also work in finances.
So we're going to talk a little bit now about the Jenny Hatch Justice Project and how we approached doing some of the systemic work for advancing supported decision-making.
So, first off, you know, we couldn't have done the work that we did without Project ACTION! We really couldn't have. Both that and the members, the individual members. And you'll see me reference them throughout this and ask for Leonard's input on how Project ACTION! Contributed to our project. But first, I have to address Jenny Hatch, and I want to. She's the name sake of our project. We're going to be talking a little bit about her situation and her case. In 2013, following her case discuss, we created the Jenny Hatch Justice Project. And it was represent—it was really representing getting her guardianship terminated in favor of supported decision-making. And the purpose of the Jenny Hatch Justice Project is to advance people's right to make choices. Meaning kind of the principal prerogative all people have to make their own decisions, to direct their own lives, and, as I said, you can learn more by visiting the website www.JennyHatchJusticeProject.org, and that includes materials if you're an attorney interested in working in this justice area.
We adopted a multimodal approach, like I referenced before, and it was in four main ways: Direct legal service, public education, systemic and law reform, and contributing to publications. And this slide includes an image of four stacked books of different colors. That's kind of trying to represent that, you know, there's different strategies that you employ together to do this. They're all stacked up, and they're on top of it, instead of weighing scales and a court gavel.
So let's turn to Holly to talk a little bit more about that first book, or that first strategy, the direct legal services that the Jenny Hatch Justice Project does.
HOLLY CEASAR: Thank you, Morgan. One key component of the JHJP work that I'm involved with is our direct legal services, and thanks to the support of the DC Bar Foundation, JHJP provides legal services to qualified DC residents with disabilities and their families who are at risk of overbroad or undue adult guardianship. We provide legal assistance to DC residents who have questions about their decision-making rights, who are in a guardianship that they're unhappy with, or want to explore less restrictive forms of decision-making support, such as supported decision-making, a power of attorney, and/or an advanced directive as well as other options.
We also receive support from the WITH Foundation to assist qualifying DC resident s who have developmental disabilities who need less restrictive options for health care decision-making.
JHJP's direct legal services are person-centered, that is, centered around the people we work with and autonomy in making their own decisions. That makes us natural and strong proponents for implementing supported decision-making on the ground for people with disabilities in case work.
MORGAN WHITLATCH: Some of the cases we've taken on have involved litigation and been relatively high-profile. This slide includes two pictures. One of is Jenny Hatch, whose picture is on the top, the namesake of the project, and one is Ryan King, the first DC resident to have a court terminate his supported decision-making, and they're both smiling, which is great. Two things you can learn from their stories is, one, how supported decision-making can look so different for different people, but also, two, the power of what it feels like to have your rights restored.
Let's turn to Jenny first. Like too many people with disabilities, Jenny faced a guardianship petition that challenged her right to make decisions. And before we entered the court case, the court had put Jenny in a temporary guardianship and placed her in a group home, where they took away her cell phone and laptop and wouldn't let her see her friends. Quality Trust became lead counsel in what became known as the Justice for Jenny trial, and we showed that Jenny doesn't need a guardian because of her history of making decisions with appropriate support. But it was resource-intensive, after a year of litigation and six days of trial, Jenny won the right to make her own decisions, and her victory received national and international press coverage, and was the first in Virginia to support supported decision-making.
Next is Ryan, who came to DC to Quality Trust seeking the same justice as Jenny. He's also a long-time member of Project ACTION!. So Leonard knows him well. And has been throughout, even under guardianship, his family was incredibly supportive of him during this process. When he turned 18, his parents were told they had to become his guardians in order for him to receive adult services. That was incorrect information, but they wanted to support him. Ryan had dreams to be an entrepreneur, and they wanted to support him to make him successfully. They also included supported decision-making principles, though they didn't call them that, in the guardianship, supporting his skills in decision-making and budgeting, and his parents supported his he ability to learn and be exposed to more difficult kinds of decisions. In 2007, Ryan's parents asked the court to remove the guardianship, saying he didn't need it. The court refused, and unfortunately Ryan's own attorney reportedly argued against what his own wishes were to terminate the guardianship. But after hearing about Jenny's success, he came to Quality Trust, and in 2016, the court terminated his guardianship in favor of supported decision-making. It brought Jenny's discuss to DC courts, an order where supported decision-making was recognized. And this was covered by the Washington Post. But both of these cases were quite resource intensive. So we regularly work to try to divert cases when a person is at risk of overbroad or undue guardianship before they get to court. Holly, can you speak more about that?
HOLLY CEASAR: Absolutely. Many of the cases we take on involve ensuring people with developmental disabilities have meaningful access to the tools they need for supported decision-making, including supported decision-making agreements and other advance planning documents. And I would love to give you an example of one of my recent cases. I had a wonderful client, let's call him TR. When I first met TR, he passionately expressed his desire to make decisions for himself. He explains, I want to learn to do things myself I don't want to rely on someone if I don't need to. TR had never been exposed to the concept of supported decision-making, but automatically gravitated toward the supported decision-making route rather than the power of attorney route. He wanted his mom to support him at doctor's appointment, but he doesn't want his mom to make medical decisions for him. He wants to build the skill set to one day independently advocate for himself at medical points. He wants his mom to teach him how to prepare for medical appointments, ask questions at the doctor's appointment, and analyze how to make medical decisions. He wants supported decision-making. And together, over multiple meetings, we drafted a supported decision-making agreement outlining the types of support he wanted and how his mom could help support him. He's now very much on the path to becoming more independent and empowered in his medical appointments and his decision-making process.
Next slide, please.
As a person-centered legal department, we rely on numerous strategies in order to zealously represent people with disabilities. There are way, way too many strategies to list in one just session today, but the key to remember is, there is no one size fits all approach. In order to be person-centered, I rely on numerous strategies grounded in my rethinking toolbox. Yep, you heard me right. I have something called a rethinking toolbox, which is why there is a red toolbox with lots of tools inside it on the slide. In this rethinking toolbox, we need to throw out any preconceived notions and expectations we have about others. We all need to rethink ways we can support people with disabilities and remain client-centered. And JHJP truly sees each person as an individual, an individual with his or her own set of wishes and abilities. We take the time to actively listen to people with disabilities and follow their wishes, and we always adapt our communication style to each client. We provide interpretation services and communicate in plain language. If someone does not understand something, it is in the attorney's duty to reframe the question and repeat the question. We also do not make decisions about whether or not we can help someone explore alternatives to guardianship in just one meeting. We will not rush people to make decisions until we are 100% ready and comfortable.
Next slide, please.
Thank you, Morgan.
JHJP is also committed to helping clients expand their capacity and decision-making ability. This commitment sometimes requires patience and creativity. As a JHJP attorney, I know that practicing law is NOT one-dimensional. In order to represent clients successfully, you need to truly see each person in their whole being. It is critical to learn about the person, their family, their interests, their dreams, their concerns, and their legal goals. So it's key, it is key to be curious and inquisitive about your clients. For example, in this time of virtual law practice that we have in the last year, which has been very interesting and unique, we have to do things differently. And when the people we support have trouble grasping how a piece of paper translates to someone's family member supporting them, we have to be even more creative. We have been creating and using PowerPoints over Zoom that are completely centered on the particular person's interests, such as their favorite movies, TV shows, my favorite food, and sports teams. We use the PowerPoint to help explain legal concepts such as the concept of power of attorney, supported decision-making agreements, supporter, supports, trust, and voluntary decisions. And all of this, all of this is through video clips and photos of the person, their family, and their supporter. For example, and this is one of my favorite examples, I developed a PowerPoint for someone that was centered on one of their favorite movies, it was centered on Star Wars. I love that movie, too, I've seen it too many times! And in order to describe the concepts of it, this was something that could be a little bit unique to have to go into this and be using the theme of Star Wars and to be talking about ways that the main characters have supports, and the ways that they get help, and the ways that it can also be reflected in legal documents, and to be talking about Princess Leia. And to be talking about the ways that she needed help, the ways that she could get help, and relating that to the client's life, when that was actually the client's favorite movie, was something that really, really resonated with them. It was something that could be helpful, when someone loves a movie, to talk about themes in the movie and talk about it in reference to their own life, and we did that very successfully. We also utilized photos of the client's family and his rugby team in order to explain the concept of a supporter. And it's something to keep in mind, it's an interesting idea to be utilizing PowerPoints during this virtual time and developing PowerPoints is a great—it is a great outlet for clients to truly resonate with and feel connected to the legal concepts.
The thing here, and I want this to be something that people digest—the key is to challenge ourselves as lawyers. To ask ourselves a few questions: What will it take? How can we piece together the right tool at the right time? That is why there's an image on the slide of a jigsaw puzzle piece fitting together. You have to think about ways that you can piece together the right tools.
Another thing in terms of key pieces to our JHJP approach, a key piece of the approach also involves public education initiatives, and in my case work, I have seen how important it is to educate family members. When a person with a disability needs additional support with decision-making, there is a tendency for family members to gravitate toward guardianship and treat it as the Holy Grail default, because that's the only tool they've heard from schools, doctors, and other people. While there may be times guardianship is necessary, we consider guardianship a last resort, after all the less restrictive options have been meaningfully explored. And many times, family members have never even heard of these options before. So we help families develop a rethinking toolbox, in which they develop a broader understanding of how they can support their loved one through respect and open-mindedness. There are so many tools in our rethinking toolbox. For example, we consistently educate families on the concept of capacity, and how they should re think the concept of capacity. We explain that capacity is not all or nothing. Capacity operates along a continuum. Capacity is not predetermined by a person's diagnosis or IQ. And I explain that sometimes people may have the capacity to make decisions at some times, and not others. Say, in the morning, or midday, after their medications have kicked in, but not, maybe, in the late afternoon, morning or afternoon. And some people may have the capacity to make decisions only if they get help understanding the decision to be made. If they can use their support networks to get answers to questions they may have, or have information translated into terms they understand. And there is one rethinking tool that families are often surprised by: Capacity can grow over time! Decision-making is a muscle that needs to be exercised. And with practice and time, capacity can develop and evolve over time. It can.
MORGAN WHITLATCH: Thank you, Holly. In terms of some of the other JHJP public education initiatives, we regularly partner with Project ACTION! To co-present with us. I think it's very important. This slideshows a man sitting in a wheelchair in front of a desktop computer. He's participating in a virtual event, and that's really how we've been doing all of our trainings for the last year. And thinking of creative ways to do that. We want to continue—when we were in person, we always included Project ACTION! Members and wanted to continue to do that as well. Leonard, you've been involved with Quality Trust on trainings like this one. Why do you think it's important for people to hear your story?
LEONARD STEVENS: It's beneficial for me to just talk about my story and understand where I'm coming from, considering I've been in their shoes before, and now it's their turn to be in my shoes.
MORGAN WHITLATCH: I know you're also a peer mentor, aren't you?
LEONARD STEVENS: Yeah.
MORGAN WHITLATCH: Why did you want to become a peer mentor? Why did you want to support people in that way?
LEONARD STEVENS: I wanted to share my expertise to everyone that understands where I'm coming from, that I've been in the same position that I was, that I was denied of everything, but until I have to advocate for myself, I'm going to be the same way as they are.
MORGAN WHITLATCH: Yeah, you have lived experience, you know, you're the real expert. I really do think that peer support is very valuable in the kind of world of supported decision-making, and it shouldn't be—it's right up there at the top of the very important list on my end.
So, you know, one of the things that we think about when we're doing our education of people with disabilities and family members and professionals has really been to dispel myths about supported decision-making and guardianship, and you wouldn't believe how many myths are out there. You know, they include, one big myth about guardianship is that parents are automatically the guardian of adults with disabilities, and that's false. Guardianship is a court process and involves getting a court order, involves court oversight, no matter what a person's disability is or how it affects them. So we're the mythbusters when it comes to that. Another big myth we hear is that parents are told they need guardianship because that's how you get continued access to confidential health and educational information. And I have to say, like, words like HIPAA, which is the health privacy law, and FERPA, the education privacy law, I think they're frequently used as weapons against supported decision-making. And we need to recognize that adults with disabilities can sign release of information forms, allowing families and parents to access some or all of that information. So we do a lot of education around those kind of easy tools to use to really be promoting supporting the person without taking their rights away.
Another big myth about guardianship we get is that it automatically makes people safer. And I'm aware of no studies that have demonstrated that. In fact, we've cited studies earlier, Holly talked about them, really supporting a contrasting argument, that worse life outcomes can result, and that people with disabilities who are supported to be actors in their own lives, to be causal agents in their own lives, have better life outcomes and are better able to avoid and resist abuse.
So I think it's important to keep in mind that any legal instrument, be it guardianship, be it representative payees, be it power of attorney, be it supported decision-making, can be abused by bad actors. So it's important to build safeguards within them. That's the best way of preventing, I think, people with disabilities from being taken advantage of, is to actually educate and regularly communicate with them, to treat them like people. Because they are! Safe choices, choosing healthy relationships, recognizing bad situations. The other thing I've seen is there are a lot of myths about supported decision-making, and one of the biggest ones is they'll tell me, Morgan, we can't use supported decision-making because we don't have a state law that recognizes supported decision-making. Uh, it is really important to realize that you don't need a change in law to do supported decision-making, okay? Supported decision-making regularly is done very informally. Some states do have some laws that recognize supported decision-making, but Ryan's case was decided, and Jenny's as well, when there was no statute on supported decision-making in either Virginia or DC. So the other thing I think, another hook you have there, is the Americans with Disabilities Act, and the Americans with Disabilities Act requires reasonable accommodations for people with disabilities. And guess what? I think that includes in decision-making. So I think there's creative ways to use federal law as well as—the other federal law would be 504 of the Rehabilitation Act, to use those laws to be promoting supported decision-making. Another big myth is people say, well, supported decision-making will work for this person, but not somebody with an intellectual developmental disability, because they don't have the, quote-unquote, capacity to use supported decision-making. Well, you know, both Jenny and Ryan had intellectual disabilities, you know? Intellectual disabilities are usually diagnosed on tests of, quote-unquote, intelligence. And as Holly described, a person's intelligence and true abilities aren't about their IQ score, it's really about their abilities that can develop over time. And with education, and life experience. It certainly did for both Jenny and Ryan. So I really encourage people to kind of help us bust some of these myths—these are just some of them—and I'm always happy to talk to people about this topic, and to make sure that families and people with disabilities get the information they need to make a truly informed choice when they decide the avenues when it comes to decision-making.
Another really big part of the Jenny Hatch Justice Project has to do with our systemic reform initiatives. We have made some major milestones in that regard, and by our side has really been the partnership of Project ACTION! The reason why they've been successful.
This slide shows a kind of winding road with a bunch of red milestone markers periodically on it, and I have to say, it has been a winding road in trying to promote this systemically in the Jenny Hatch Justice Project's DC efforts. But the fact that we've achieved these milestones and are getting farther in our journey about supported decision-making in DC is very promising.
One of our first big victories was actually in a school setting. It involved getting revisions to the DC Public Schools' policy that was their transfer of rights guidelines. Now, transfer of rights, as some of you may know, when somebody reaches—a student in special education—reaches the age of majority, the educational rights that were held by their family in the special education context transfers to the student, and that's called the transfer of rights. So DC Public Schools had a transfer of rights guideline that really forced families toward guardianship. They said, like, this is the transfer of rights time. If you have concerns that your child cannot exercise those rights appropriately, here's the probate court number, and probate court in DC controls guardianship. And we did a sign-on letter, we did a ton of education of the community, Project ACTION! Joined us in doing that, and in August of 2013, as a result of that advocacy, DC Public Schools revised its guidelines to include the option of supported decision-making for adults in special education, and it created a supported decision-making form. Now, everybody always talks to me about forms, okay? Supported decision-making isn't about a form, okay? It's so much more complicated on the ground to do supported decision-making. It takes the will of supporters to support people, and people with disabilities asking for the help that they want, and getting the kind of help that they may want.
But I do say that, as a lawyer, forms can be helpful in enforceability, so I will say that. I realize supported decision-making is so much more than paper, but it can be helpful in trying to enforce supported decision-making arrangements. And honestly, the DC Public Schools form was just a fancy FERPA form, it was just a fancy release of information form that allowed the school to share information with the person's supporters so they could support the person in making their own decisions. It was the first of its kind in the nation that was well-publicized.
Another big milestone happened in October of 2014, and that was when, what we were finding was that the supported decision-making efforts of DC Public Schools in the SDM form weren't reaching all of the students, in part because a lot of special education students in DC do not receive services necessarily through DC Public schools. They also receive it through our public charter school system. So we were seeing reforms being made in DCPS funded schools that were not trickling it down or not actually making it to those who weren't in those kinds of schools. The second piece were noticing was that powers of attorney were not being recognized by school and school attorneys as valid when they were signed by an adult student in special education. So in other words, we were seeing the civil rights of a person with a disability to knowingly and voluntarily sign a power of attorney assigning an agent to act for them for the purposes of educational decisions not being honored because they were in special education. That was extremely concerning to all of us, because it was happening a lot in due process hearings, which can be a really complicated proceeding where someone does want to have an agent involved in helping them navigate that. So that led us to push DC law makers to formally recognize powers of attorney and supported decision-making in education. It was fortunate because at the time there was an educational reform movement going onion supported decision-making that provided us a forum to make those arguments.
And the DC Office of the State Superintendent of Education issued the rules regarding supported decision-making. That was a big success in you're in the education realm. In addition, in October of 2016, we had Ryan's case. I think it was to be able to show an example and be able to educate a court in DC and be able to point it to DC residents was helpful, because I think it's those personal stories that are going to be successful in advancing supported decision-making, those stories that say, okay, this is how it's done. Like Holly and Leonard's conversation, this is how I did it. It's going to be different for everybody, but I think those stories are helpful.
We reached another big milestone in May of 2018, DC became the fourth US jurisdiction to put supported decision-making agreements into its laws. Because we were thinking, it's not just about in the educational realm. What about the health care realm? What about the financial realm? Are there ways for us to create incentives around supported decision-making in those realms? And those supported decision-making agreements are ways you can formally document the supported decision-making arrangement, and have it be legally recognized, if you use the District form. Because this law specifically says that people who get that form have to reasonably rely on it, and it can be very helpful in trying to promote supported decision-making. But I'm going to say, that law that got passed that recognized supported decision-making across the lifespan in different life areas, it wouldn't have been able to happen without Project ACTION! Because it was Project ACTION! That led that initiative in educating legislators. It was really the forefront of the passage of the DC law. It was the fact that the self-advocacy movement in DC was the one who was pushing for the law that I think made it pass. It wasn't professionals like me. It was really people with disabilities and District residents saying this needs to change, our rights need to be respected.
So, do you want to give some examples, Leonard, of some of the ways that Project ACTION! Supported that effort?
LEONARD STEVENS: Well, based on legislation, what they did, I wasn't aware of it until a couple of years ago when I first joined Project ACTION! And that was when we were trying to push that reform, it was beneficial.
MORGAN WHITLATCH: You know, Project ACTION! Was really involved in letter writing campaigns, testifying, like they do all the time, before the DC Council, which is a state's legislature. They kept going to the actual Wilson Building, the capitol where the legislatures are. Going up and down the hallways, educating legislators, telling them why it's important. And I think the other big pieces that they did was they demystified, I think, the concept of supported decision-making. So it wasn't about, listen, legislators, you need this form. It was: I'm not being respected. My decision-making rights aren't being respected, and we need to have a formal recognition that I can get the support I need to be able to make my own decisions without having to have a guardian or someone else make them for me if I don't want. And I think that was a really powerful message of DC's role in all this, was that it needed to be led by the people with disabilities that are impacted.
So that was our winding road for that.
The other thing that we thought was important was to showcase some of DC's experience to see, what can others learn from us? What could others in other states learn from us and our experience, the pros and cons of our experience? So we wanted to share the DC experience through the national discourse, and we did that in a variety of different ways, but one way was the National Council on Disability was developing a second report on alternatives to guardianship, specifically looking at the experience of people with intellectual and developmental disabilities. Their first report had come out in 2018, and it had been a cross-disability report, and we thought Quality Trust was the project director in a cooperative agreement to support National Council on Disability on that effort. When it was coming up with the second report, we thought to ourselves at Quality Trust, we wanted to throw our hat in the ring for that, too, but in partnership with the US Arc and Autistic Self- Advocacy Network. We thought this was a chance to do a deep analysis, because there had been a lot of support of supported decision-making on paper in DC, in policies, forms, and statute. How is that actually going to translate into practice? What could others learn from DC's experience? And when we were working on this report, a chapter of that report is specifically focused on the experience of people with intellectual disabilities. And we had focus groups with Project ACTION! To discuss their experiences. And the report made recommendations, both nationally, and you can read those by visiting www.ncd.gov and opening up the June 2019 report. It also made recommendations based on DC's experience, and one of the big takeaways was that while state law regulation and policy changes to advance alternatives to guardianship are needed, more is required to ensure full implementation for people with intellectual and developmental disabilities on the ground. We heard stories from Project ACTION! Members that described ways in which their rights were still not being respected, the way in which there still needed to be more education about the laws on the books, so that people understood that supported decision-making was formally recognized in DC as an option. And it just tells us our work isn't done. And that sometimes people are so focused on getting a law changed, the books changed, they're not realizing, how do you actually implement that law change? So it just highlighted that there really needs to be intense and frequent education of people with intellectual and developmental disabilities, their families, state agencies, educational personnel, judicial personnel, attorneys, and financial institutions. All of that needs to continue going on. There still need to be individual cases that are brought that recognize individual supported decision-making. COVID-19 has brought to the fore a lot of policies and practices in hospitals that aren't recognizing the right of people with disabilities to make decisions with in-person support. In the times of COVID and hospital visitor restrictions, there have been situations in which more and more often, you know, people are not—who need to have in-person support in the hospital to be able to communicate decisions and provide informed consent and get access to quality health care isn't occurring. I encourage people to read about that effort, because that's education, too. We need to realize that support can take many forms, including in-person support.
So, I also wanted to kind of show you—give you an idea of the kind of US trends when it comes to supported decision-making and the formal recognition of supported decision-making. And one of them has to do with legislation and resolutions. Again, that doesn't mean you need a change in state law to advance supported decision-making. That's not what I'm trying to say. But it can assist with formal recognition to have something on the books about supported decision-making. It can add a legitimacy to the concept. And so some of the trends that we're seeing include this map. Now, what this map looks like here, this is a slide, it has a drawing of a map of the United States, and it's colored and shaded to show the status of supported decision-making legislation and resolutions in all 50 states and the District of Columbia as of March 1, 2021. And I say as of March 1, 2021, even though I know we're a little farther in the month, but this is constantly changing, it's a constantly changing map. The states that have enacted such legislation are shown in dark green blue, and they include 40 states and the—I'm sorry, they're in dark blue, and—I'm just trying to look here, sorry, I'm not trying to be confusing. So the states that have actually enacted such resolutions and legislation are shown in dark green, the darkest on here. And they include 19 states plus the District of Columbia. And that includes things like Alabama, Alaska, Colorado, Connecticut, Delaware, Indiana, Kansas, Louisiana, Maine, Maryland, Minnesota, Missouri, Montana, Ohio—with the caveat that supported decision-making is not defined well in the Ohio statute—Massachusetts, and Wisconsin. States that have passed resolutions but haven't enacted them yet, so they're not actually in law, are colored in a light blue green, and they include 19 states, and I want to make sure you know what those states are. Those are Arkansas, Arizona, California, Florida, Georgia, Illinois, Kentucky, Massachusetts, Mississippi, new Mexico, New Hampshire, New York, North Carolina, Oklahoma, Oregon, Tennessee, Utah, West Virginia, and Wyoming.
Now, there are also some states that have things that are hashed, so in other words, diagonal lines going across them, and those are states that they're still pending legislation in there. That means the bills haven't died yet, but they're still pending, not yet passed, and 18 states fit in that category. There's Alabama, Arizona, Arkansas, Florida, Georgia, Illinois, Kansas, Kentucky, New Hampshire, New York, Oklahoma, Oregon, Rhode Island, Texas, Virginia, West Virginia, Wisconsin, and Wyoming. The states that have not introduced or passed any legislation or resolutions are colored in a light gray. And they include Hawaii, Idaho, although Idaho has revised its court rules to incorporate the idea of judges ruling out conflicts with less restrictive alternatives to guardianship such as supported decision-making before appointing a guardian, so legislation is not the only option here, South Carolina, Pennsylvania, South Dakota, and Vermont. That was a lot of wording here, but I want to make sure I'm being fully accessible with respect to this map. You'll see that some states have enacted supported decision-making legislation, but also have additional supported decision-making legislation pending, and I think this really highlights the fact that states are approaching supported decision-making legislation differently. Some legislation about codifying supported decision-making agreements like DC. Others are about ensuring recognition of supported decision-making as a less restrictive alternative to guardianship that courts have to rule out before appointing a guardian or conservator, and still others are really about ensuring supported decision-making in education. There's also a movement to really recognize supported decision-making as an accommodation to a person's disability in the context of organ transplantation, so to attempt to address fears about discrimination with respect to that and people with disabilities.
So, very interesting trends that are happening now in the legislation realm that I really did want to highlight, and DC was part of that.
The next slide, there's more trends we're seeing in terms of the spread of supported decision-making in the United States, and we have here a drawing of a map of the United States that's included here. It's a decorative map. The states that, there have been projects at the National Resource Center for Supported Decision-Making that runs the community of practice funded, and it was a total of 18 projects in 14 states. And those projects really were quite different from each other. Some were like educational campaigns. Some were pilots, in other words, trying out supported decision-making with a group of people with intellectual and developmental disabilities, that happened in Maine, to see how it worked and then looking at the results of it. Others focused on restoration of rights, like in Florida, the public guardian worked to try to restore people's rights using supported decision-making. And so there's a lot of different ways that these projects have tried to focus on that.
And the states that have them include Delaware, Florida, Georgia, Indiana, Maine, Minnesota, Mississippi, North Carolina, Nevada, New York, Oregon, South Carolina, Tennessee, and Wisconsin. We've also seen more court orders and decisions, and this slide indicates there's at least 12 states, but there's actually 13, I learned that Alaska has joined this group, and that five cases of guardianship were either terminated or limited as a result of supported decision-making agreements, which is really exciting.
As well as the District of Columbia. So the states in addition to Alaska include Florida, Georgia, Indiana, Kentucky, Massachusetts, Maine, Minnesota, Nevada, New York, Pennsylvania, Virginia, and Vermont. And there may be more. In part because, you know, one of the difficulties in kind of monitoring orders is that they're not all publicly reported, and sometimes a guardianship is terminated in favor of supported decision-making without it actually being referenced in the order. You know, supports and services can be an alternative to guardianship. We have also supported decision-making pilots in states, and we supported them, as I said, but there's also some separate pilots that came up, one of the very most popular or familiar one was the first rigorously kind of evaluated one, in Massachusetts. But there also have been pilots in Alaska, California, Florida, Georgia, Indiana, Kentucky, Massachusetts, Maine, New York, Vermont, Texas, and more. So, because some of these pilots are not necessarily reported upon, but people are trying out supported decision-making, and I know that anecdotally. I really encourage people to visit the National Resource Center for Supported Decision-Making's website, has an "in your state" section that we do our best to periodically update that really talks about developments in states with respect to this. That particular page is http://www.supporteddecisionmaking.org/states. And I really encourage people to take a look at that, because I think it's ever evolving, and if there are efforts happening in your state that aren't reflected on that website, I encourage you to reach out to me. My contact information is on the final slide.
Let's look nationally. We talked about the state of the states and what's happening across the country. But we're also seeing more and more federal agencies and national organizations recognizing the important role that supported decision-making can and should have in people's lives. And this slide lists some agencies and organizations. There's also a drawing of a blue map of the United States there. My goal here—it's all in blue—the goal is what's happening on a national basis as opposed to an individual state basis. So the U.S. Administration for Community Living has federally funded many different projects that involve research, training, and planning for supported decision-making, including the National Resource Center for Supported Decision-Making in 2014. And its website, as I said, the website for the National Resource Center for Supported Decision-Making, I already provided that, but it was really funded to try to advance supported decision-making for older adults and people with disabilities. The grant for that has ended, however, Quality Trust is continuing to be advancing the National Resource Center for Supported Decision-Making.
The National Guardianship Association in 2016 had a position statement on guardianship, surrogate decision-making, and supported decision-making, and it states that supported decision-making should be considered before guardianship, but also incorporated as part of the guardianship if guardianship is necessary. The Social Security Advisory Board in 2016 recognized supported decision-making within the context of finances. It issued a representative payee call to action that stated Social Security Administration should consider supported decision-making as an alternative to appointing a representative payee. A representative payee is someone who the court appoints—excuse me, the Social Security Administration appoints—to manage a beneficiary's benefits if Social Security determines that that beneficiary cannot manage their benefits on their own.
The American Bar Association has really—and the American Bar Association's efforts have been—or you really should look at them, these are just highlighting a couple of them. There's the practical tool resource guide that came out in 2016. It was a toolkit that really was designed to help lawyers identify and implement decision-making options that are less restrictive than guardianship, including supported decision-making. The American Bar Association also, in 2017, had a resolution that it issued that really urged legislatures to amend their guardianship statutes to require supported decision-making be identified and fully considered as a less restrictive alternative before guardianship is imposed, and that it could also be grounds for terminating a guardianship.
AIDD and the Arc did a joint statement in 2016 on autonomy, decision-making supports, and guardianship to promote less restrictive means of support, including supported decision-making. I guess next would be the National Conference on Commissioners issued a uniform law that was focused on rethinking guardianship and guardianship law, and it's called the Uniform Guardianship, Conservatorship, and Other Protected Arrangements Act, and it proposed that states make a variety of changes to their guardianship law, including, actually, eliminating the term capacity. Nowhere in the model law where you see the word "capacity", and the law would, among other things, require recognition of supported decision-making supported decision-making as a less restrictive alternative to guardianship and conservatorship. The U.S. Department of Education, the most recent version in 2020, issued a transition guide to postsecondary education and employment for students and youth with disabilities. And it recognized supported decision-making and other less restrictive decision-making supports for adult students in special education. So it emphasized that guardianship wasn't necessary when transfer of rights occurred, there are other options that could be available. I mentioned the National Council on Disability reports both in 2018 and 2019 already. We also have seen supported decision-making recognized for older adults. The United States Senate Special Committee on aging issued a report that recommended states consider less restrictive alternatives, including supported decision-making. One of the exciting things I wanted to share with you that ACL has funded in part because it affects people with intellectual and developmental disabilities, is it funded a five-year project that started on September 1st focusing on transition age youth with intellectual and developmental disabilities. It was billed by ACL as an alternative to guardianship youth resource center, but the name under the grant is center for youth voice, youth choice, and the goal is for states to promote alternatives to guardianship so fewer youth have guardians, and have youth with developmental disabilities to lead the efforts in their state for supported decision-making. So the goal is to create a youth ambassador program, and it's really youth with intellectual and developmental disabilities leading the way. It's a model I really, I really support, I think it's very consistent with the Jenny Hatch Justice Project's approach too. It's being led by the Institute for Community Inclusion at the University of Massachusetts in Boston in partnership with Center for Public Representation, as well as self-advocates becoming empowered, the Human Resources Institute, which is conducting the evaluation in conjunction with Harvard and the Georgia protection and advocacy office. As part of the national coalition, I really think the transition-age youth piece of this is critical in trying to advance efforts like supported decision-making, so stay tuned. That will be exciting.
So, now we want to take the opportunity, we're about 15 minutes left, and we want to make sure to leave lots of time for questions. So I'm going to stop sharing my screen—oh, actually not, I'm going to keep it up so you can get our contact information here, but I'm going to look at our chat box. Actually, Holly, I cannot look at my chat box because I'm sharing my screen. Can you look at the chat box and see what's in there?
HOLLY CEASAR: We don't have any questions at the moment, so if anyone has any questions, we'd love to have them in the chat box, we'd love to answer them and talk about it. So let us know if you have any questions.
MORGAN WHITLATCH: Some of the common questions I get about supported decision-making, I've kind of shared a little bit in terms of the myths of both guardianship as well as supported decision-making. So I can talk a little bit more about some of those myths to try to help that we've had to bust in talking about this. One of the myths about guardianship is that that it's needed by people in order for parents or family members or caregivers to go to special education planning meetings, or service planning meetings. After the student turns 18, or the person with a disability turns 18. And the reality is, that's not true. People with disabilities can invite people to their meetings, and regularly do! It's about trying to educate people to say, who do they want to support them, how do they want to choose that kind of support?
The other thing—so that's one really big myth. Another myth I hear a lot about is, with supported decision-making, is it official? Like, is it something that, you know, is enforceable. So there are laws, as I said, that can be used to enforce supported decision-making, and should be used to enforce supported decision-making. So it is enforceable, it is legitimate, it's been recognized, as I indicated in that long litany of different states that are recognizing supported decision-making formally. And I think that's a really, it's recognized on a national level of supported decision-making. I'm going to be excited to see, I think, more pilots done that officially show how it can be done in different kinds of populations. I think there's not a tried-and-true way—people say, what's the best legislation, what's the best pilot? Listen, we need to test it, we need to try different methods of doing t just like supported decision-making on an individual basis, there's not a one size fits all model. There's not a one size fits all model for states. So I think that's another really big piece of that. So those are some of the myths I want to share.
HOLLY CEASAR: Just to let you know, I think there may be an issue with the chat box. I'm having individuals message me and say they can't message the whole group. So I had someone message me privately, but I wanted to let you know, if you have a question, feel free to message it to me privately and we'll discuss it. So I'm going to go ahead, in the meantime, while hopefully we're working on fixing the chat box, I'll read the question out loud for everyone. This is from Nico Lewis, for people working from group homes or SROs, what are ways that staff with support their clients in considering SDM if their clients are not currently receiving that model? Maybe you can answer that for us Morgan.
MORGAN WHITLATCH: Yeah, happy to. I think that's a really good question. I think direct support staff play an important role in supporting people. What was the acronym that was used?
HOLLY CEASAR: SRO.
MORGAN WHITLATCH: So I think that one of the ways that staff can really be supporting people with disabilities in exercising their rights to supported decision-making is, I think, twofold. One is actually being involved in the decision-making process, so even if they have a substitution decision maker involved in their lives in some way, still involving people with disabilities and keeping them informed in their decision-making, not making decisions for people without them there, not making decisions for people and supporting them. I've done whole trainings for direct support professionals on those issues. The second is, if somebody is in what somebody considers to be an overly restrictive arrangement, like guardianship, and why does this person need a guardian? I think it's a good goal to get someone linked up with someone who can get the guardianship terminated. There was a case in Kentucky involving a woman named Suzie and Suzie had basically been under guardian ship since she was 18, didn't have a big, quote-unquote natural support network, but she was supported by professionals in her life, and they thought, this was overly restrictive, she doesn't need to be under guardianship, she can make decisions for herself. They linked her to an attorney and supported that attorney in having her become the first person to have her guardianship terminated in favor of supported decision-making in Kentucky, so I think there are a lot of creative ways that support professionals can really be promoting supported decision-making.
I also think it's very much consistent with ethics of providing that kind of support, of really making sure that the voices of the people you're supporting are heard.
Holly, did you want to say something?
HOLLY CEASAR: I'm just trying to answer some, there are some questions here about getting the PowerPoint. I know that the symposium is going to be posting the PowerPoints within the next few days, so we should be having copies all updated very soon. So I do know that they should be doing that shortly, so if anyone is interested in having a copy, it will be available, hopefully in the next few days. I've been getting some questions about that in the chat.
KARL BELANGER: This is Karl, the chat had been set to chatting with presenters only from a previous session. That has not been changed, and it is now allowed to chat with anyone.
MORGAN WHITLATCH: Please chat with us, even if it's to share efforts to advance supported decision-making or to brainstorm about ideas to do that, or challenges that you've been having in your state, please, please share. I see from Micah Lewis, still thinking, I appreciate that, I appreciate that a lot. I think these kinds of thinking through of supported decision-making and how it works and the kinds of questions that come up with it, it's still underway. I think it's actually, the discussions that we're having today, where we have an opportunity to interact and share ideas or ask questions are some of the most powerful ways of trying to learn from each other about supported decision-making.
Where did you face the most resistance to your advocacy? From parents? From the state representatives? From courts? Did you face resistance from people in the special needs community? What an excellent question.
I'm going to tell you, having worked in the National Resource Center for Supported Decision-Making, this varies based on the state you're in, so I'm going to speak from DC's experience. I would say the greatest resistance we received to advancing supported decision-making in DC was the very systems that support people with disabilities, for lack of a better word. We had a very supportive Department on Disability Services for supported decision-making. They actually were the ones who really pushed the mayor in—in DC, we have a mayor instead of a governor—to introduce that particular bill. However, it was like the institutions around it, the provider community around it, around supported decision-making.
The other thing I would say, I think parents, you know, parents have an individual level—we did face some resistance from parents, but it mostly had to do with being educated about what we were really talking about, that we weren't trying to do away with guardianship or didn't recognize guardianship as a legal tool—we were just trying to create another tool to use. And when you present it to parents like that, many of them come around to supported decision-making. Holly, is that true in the individual cases you do?
HOLLY CEASAR: Absolutely, I think a lot of people don't know about supported decision-making and what it means, and once you have the chance to talk to families about it and describe what it means and what's going to be involved, people are really excited about it! There's really a sense that that's a lot of independence and self-autonomy, and when you can have that experience, people are excited about it. So I have had some experiences in the past with clients where their families were a little bit more hesitant about it, and they felt a little bit nervous about that road because they didn't know about it, but when you describe it and you talk about what it means and you go at a slow pace, in terms of exploring it with the families and the clients, and you take time to really get to know people and what they're interested in and the type of agreement they're looking for, they very much come on board.
MORGAN WHITLATCH: The other thing I'll say is we did receive a lot of resistance from the private bar in the District of Columbia at the time, meaning private attorneys, guardianship attorneys. People on fiduciary panels. There was some opposition there in terms of it. I think in part because there were other elements of our supported decision-making bill that they were more mad at. And that didn't have to do with supported decision-making, and I think that kind of diverted their focus a little bit from supported decision-making, but the bill itself was very much—faced some resistance by the private bar. And I think the way we overcame that was to educate the council members who were actually passing the law on what we were doing and what we weren't doing, because there were a lot of myths about what we were trying to do, like remove protections from people with disabilities, and that certainly wasn't our intention. That's an excellent question. Also, did we face resistance from people within the special needs community? People with disabilities were on board, Project ACTION! Was on board with this, and we had a lot of our protection and advocacy system, our university centers for excellence in developmental disabilities, our developmental disability council, they were all on board with that, we really created a coalition that included family groups, family member groups, parent groups and disability rights groups.
So we didn't face a lot of resistance from the actual, just general, the general kind of community on this. It was more from the kind of special interest groups.
How can someone be proactive as a supported decision maker when they are across country? I have a hard time ensuring family member's rights to have me present when I'm in California and she's in the Midwest. That is a very—I think distance is a challenge. I think the first thing I would say, you know, we have to realize that it's not I'm a supported decision maker, because it's the person with a disability who's the decision maker, but I think you mean supporter, and how can you be proactive in supporting when you're across country and make sure you're actually present for meetings that are there? I think it really comes down to helping the person with a disability learn how to say "I'm not going to have this meeting without this person here, I need this supporter here with me", whether it be putting something in writing, be it them saying your name. I think that's the way, trying to empower people, like Leonard was saying, I'm sorry, trying to... make people know what their rights are. And how to know your rights. You don't know your rights until you know your rights, so I think part of it is trying to make sure that people know what their rights are and are willing to say, we can't have this meeting without my supporter.
I also think that this virtual world has changed the dynamic a little bit in terms of people who are across country being able to participate in meetings. I don't know if that's your experience or not. I think that I have personally found that more and more kind of technology is being put in to try to cross that digital divide on the provider level. And I think it's about supporting the person making the decision to know they have the right to have you there and supporting that, and documenting the situation where the person is not allowing access to a supporter. Would you have anything to add to that, Holly?
HOLLY CEASAR: No, I agree with that completely.
MORGAN WHITLATCH: Another question: I know some of the work I've been doing in the Deaf and disabled communities, there's pushback in the community due to internalized sigma and shame, mainly due to the fear that caretakers and court systems might still try to use supported decision-making as a way to disable folks without guardianship. They're worried about how to keep persons accountable. I think that's a very good point about how do we create safeguards within supported decision-making arrangements that... kind of battle against undue influence? And that kind of thing. I think it's about training supporters. It's about saying what the role of a supporter is and isn't. It's about, you know, it's about trying to say, you know, listen, you're not a decision maker here, you're a supporter, and this is what makes a good supporter, and this is what makes a bad supporter. I think a lot of people are focused on training people with disabilities on supported decision-making. I think you need to train their support networks on supported decision-making. I thought you were going to say something a little else, maybe you're alluding to this too. There was some pushback in Massachusetts from a self-advocacy community against supported decision-making because they felt it was kind of stigmatizing them, like, saying, I can use supported decision-making just like anybody else, why do I have to have an agreement, when you don't have to have an agreement? And they were worried that it was going to be used just as another form of guardianship in some way, like, oh, you have to agree with your supporters. And I think that those can be legitimate concern about supported decision-making. And I think you have—yes, was the answer, yes! I think that's really what—a big concern can be. Like, why does it get a special name when people with disabilities use it, but other people use it all the time, and may be manipulated by people? I think that's a completely legitimate concern, and it comes down to ANY kind of tool can be misused, and maybe we should make supported decision-making more about, like, universal access. So in other words, like Alaska, for example, was the only—I think it's the only state with a supported decision-making agreement law that said, listen, you don't have to have a disability to use this document, anybody can use this document! While other jurisdictions, including DC, link it to, you have to be a person with a disability to use this document. So maybe it's about trying to promote, maybe, universal access to supported decision-making. It will be interesting to see how that ultimately plays out in Alaska. One of the issues I had in DC has been, if I do that, if we have universal design like that, how do I enforce it across state lines? Because in DC, a lot of people get health care and services in Maryland or Virginia, and neither of those have adopted supported decision-making agreement laws. So I had seen some advantage to connecting it to disability to connect it with the Americans with Disabilities Act to promote enforceability and say this is an accommodation. So I've seen—how it ultimately will play out in Alaska, I think Alaska doesn't have that same problem, they don't get services out of state in Alaska because of its geographic nature. It will be interesting to see how those different models work out, but you raise a really good appointment.
You mentioned some state projects to develop implementation materials and training. For states that haven't done that yet but do have a statute, are there materials you would recommend for developing a proposal? What are some tools to develop? Here's what I think for state projects. While there are tools out there that can be applied in any state about supported decision-making, think really carefully about, if you want to advance supported decision-making in your state, what are the unique things about your state law that need to be, to adopt those kind of more broad general materials? So, like, you know, Indiana has developed a toolkit, and you can find it on, if you go to the "in your state" section I referenced for supported decision-making, you'll find a link to their supported decision-making website and you can see the example of the tools they did, and they've adapted some of their tools to their specific state law in collaboration with the protection and advocacy system. So I think you need to think about how you talk about this with professionals in creating flyers for toolkits, how do you explain this for schools and create school toolkits. When I say schools, I also mean educators. How do you do this for health care professionals, for lawyers, and courts?
The other thing, I think, in terms of actual—I'm sorry, we're out of time, but I want to thank everybody. Please email me. I'm happy to share additional ideas for tools with you. Go to supporteddecisionmaking.org and you can see different tools that are available there, and there are also links to other really great resources of other projects. So, thank you so much.
KARL BELANGER: Thank you for presenting, and have a good day, everyone.