LEE LARRIU: It looks like we have quite a few people in the room. So let's get started. So my name is Lee Larriu. I'm a middle-aged woman with blonde hair and blue eyes, and I'm wearing a black jacket and a pink top.
I would like to welcome everyone to the Massachusetts Advocates Standing Strong and GAIN Coalition presentation. The title today is unravelling the mysteries of guardianship alternatives, with a community conversation with those who live it.
Before I get started and pass it over to our fantastic presenters, I'm going to share with you real quickly what the MDDC is.
The Massachusetts Developmental Disabilities Council is an independent state agency funded by the Federal Government.
We are dedicated to empowering people with intellectual and developmental disabilities and their families to enjoy full, productive lives.
We promote self-sufficiency, community, inclusion, and opportunity.
And a fun fact. MDDC is part of our national network of 56 Developmental Disabilities Council in every US state in all of our territories.
The Guardianship Initiative that we call GAIN is the Guardianship Alternatives and Innovation Network. That is facilitated by the MDDC.
We focus on promoting, supporting, and implementing alternatives to guardianship for people with intellectual/developmental disabilities.
We include self-advocates, family members, and advocacy organizations to ensure that individuals with disabilities have self-determination rights.
So I'm going to turn it over to Betsy, and Betsy Johnson is going to outline some key options for decision-making. Betsy
BETSY JOHNSON: Thank you so much, Lee. Again, I'm Betsy Johnson, and I'm happy to be with you all tonight. I'm going to outline some options as Lee said, and I'm going to take you on an unexpected little roller coaster, because we're going to go in some different orders [laughing] but I'll explain what I'm putting first and the reasons for that.
I'm going to try to fit in a lot, and do an outline of a number of important key terms that you'll like lie hear tonight from other presenters.
I'm going to start with, very first, and this was least restrictive to most restrictive, and so it will look a little out of order.
What I'm going to say first, Massachusetts HealthCare Proxy is where I'm going to start. This comes out of a law in Massachusetts that was established in 1990. I emphasize that because now this same law is 36 years old.
And it is a wonderful opportunity to be able to choose someone that you want to help you with medical decision-making when you need it.
It's something that every adult that's legally competent. What that means is, anybody who is over the age of 18 and has not been adjudicated or told in a court of law, determined in a court of law, as incompetent.
So, a person has their competent status. You can choose who you want, and that person has full power. Has no limitations over decision-making. You make your own decisions, unless you can't, and a doctor will decide when that might be for you.
And then your Healthcare Agent that you chose, that you empower to make decisions that reflect you, uhm, that person then can make decisions if they need to. Knowing they need to match up as best they can with the decision that you would make if you were able to make that decision.
So that's the first least restrictive option in a nutshell. Obviously, all of these topics could be as long as anything, but we're going to go through them in outlining, and so when you hear them you'll recognize what that means.
The second is something called a Durable Power of Attorney. The difference in Power of Attorney and Durable Power of Attorney is kind of simple. Powers of attorney, without the name "Durable" attached, end when you become incapacitated. But the Durable Power of Attorney survives that. And so, it's always in place.
It's a person you chose, or persons that you choose, that allow all decisions that are nonmedical. You can craft these just how you want them. You can have a lawyer do that, or you can look at templates on the internet. You can decide what powers you would like to give over to somebody.
So, if you are choosing a Durable Power of Attorney, make somebody trustworthy, somebody who treats you with respect, and uhm, it's a way that you have protection and safeguards for other areas of your life if you need extra help.
And so that's the two absolute documents most adults will need at some point in their lives. There's no obligation to have these, but it is very nice to have these as protections for decision-making.
The next is something that you may be more familiar with, Supported Decision-Making. And the Supported Decision-Making is saying something similar, and that is, you the person are in charge of you. But if you want or feel you need extra help, you can choose people who you want to help you in many areas of your life.
It's an agreement, many times, that's in writing. It doesn't have to be. It's not -- it doesn't have to be a contract. It can. There are all sorts of ways to look at that under the Supported Decision-Making process agreement. And so you, as a person, are in charge of that.
If you want loved ones or friends to help you, again, you choose, they will guide you in decision-making, but you're still in charge of that. You take people's advice as you see and you move forward as you see fit.
So under these, none of these require a guardianship. In fact, are saying that they in many ways are stronger TLAN a guardianship. The individual, him or herself, who is legally competently, chose you, another person, or persons to make decisions. Therefore, typically the powers are not limited. They're very strong powers. And we'll see the differences when we come to a little more restrictive issues.
But under these, often you'll see Supported Decision-Making include the same things we talked about a few minutes ago. A Massachusetts Health care proxy document, or a Durable Power of Attorney. It doesn't have to, but those are legal documents that are recognized that will allow the people you want and you chose to make decisions for you thinking about you, of course, and what you would do, if you're not able to do that.
So, supported decision-making also many times uses those documents.
Another thing that is used, and whenever you're considering not needing or not wanting a guardianship, you can protect your finances if you or your loved one receives Social Security.
You can protect that if the person needs some help with banking or handling their finances. No problem. You don't need a financial part of a guardianship. It is called "Representative payee" through the Social Security system. The Social Security Administration does not require a guardianship for this. It is a process they have that they will actually help you with. There's ways on the website, on the Social Security Administration, to look at rep payee.
And that is other -- if you are -- if someone is receiving services, sometimes a service coordinator can help with this. It's not that complicated. But it is called Representative Payee. The person's bank account is still theirs. The money is still theirs. But it is also comanaged by a person would is taking responsibility to make sure no one takes advantage of your money or the person's money that's in that bank account.
The other thing that you may experience when someone turns 18, which we're talking about, once a person's 18 they're considered legally competently, unless adjudicated and their competent status taken away in a court of law, if they're still competently you can have a different type of shared decision-making commonly called base authorization form, right?
I'm a parent or loved one. I don't think I can talk to MassHealth because my son or daughter is now over 18, all communication is gone. Oh, not true. The Massachusetts MassHealth has something called a health authorization form.
And so that can be signed by the individual who has turned 18. If they agree they're okay with you talking to MassHealth, because frankly they don't want to wait on the phone for hours and talk to MassHealth about complicated things, then you would have the authority, based on them telling you, yes, it's okay, and signing this form that's on the MassHealth website, the initials of the form are ARD, and it is called, again, health designation form. It's a representative form, I should say that, and hence the R. So, that is on their website program
Again, very simple. It is a release that allows you to speak on behalf of another person with MassHealth.
The same thing can happen if Social Security will not talk to you because your loved one is 18. Social Security does not require a guardianship to talk to you. They have their own authorization form. If you're every excited going to the Social Security Administration website, that form is officially number SSA-1696. And that allows the individual to assign you the power, your loved one can -- if it is me assigning power, I'm assigning power to a person I trust that you can speak to Social Security on my behalf.
I give you full permission. You can do that. You can talk about my benefits. Whatever you need to. Because I've signed an authorization form because I'm now over 18 and I'm not adjudicated competent. As long as I agree I trust you, we're good.
Those are things people think they have to have all this power under guardianship. I have to protect finances. You don't have to worry getting a guardianship. You just need to think about this form we have so we can talk to your legally. They do not require a durable power or power of attorney at Social Security. They're fine with their own authorization form.
I think these are important for people to understand because it's frightening when someone is turning 18 and has a parent or loved one, I don't know what to do now, it's a really tough time. So, these options really make it simple. Massachusetts Health care proxy is free, off the internet. The Durable Power of Attorney, as I said, you can go to an attorney. That's fine. You don't have to. There are templates on the internet for that.
So, you're not in a situation where you're expending dollars that may be hard to come by in our current economy in general, but also just hard to come up with a few thousand dollars to do a guardianship when actually a person who has the ability to say "I trust you, I like your help, it's --" you go from age 17, I'm fine you helping me, to age 18, I'm fine you helping me. But you have to sign forms that guarantee I'm okay with that. The person that's 18 is going to sign this power, as I said.
Moving on from that we're going to have a presenter tonight -- actually, there are several presenters that will talk about their Supported Decision-Making, how they decided to do that.
We have a person you'll hear from that's under a limited guardianship. So, what would that look like? Well, in this case you'll see there's many ways to have a limited guardianship, but this person has chosen to have a medical guardianship. But that's it, the only area. She trusts -- she really wanted to trust someone to be there and be there for her. So, from her perspective, at the time she did this, and she'll explain it, and she's able to explain herself, but that's what she chose.
So, that will be an example of a limited guardianship. It is just medical care. And you can do the reverse of that in some ways. You can have a Health Care Proxy -- and this is just one added here. You can have a Health Care Proxy document that handles all medical stuff. If you need a guardianship in something else it is not excluded but it keeps the Health Care Proxy document in place for you, like you chose, and other areas there might be something else you need. Hard to understand what it might be. It could be
But it could be placement or stuff in the future. Just know there's a lot of flexibility
Any time you get into the name "Guardian" you have to understand you're going to be declaring someone legally incompetent in certain areas. It is very important. I often hear parents say, Betsy, we don't want to limit our child's future, we don't want restrictions, but we are concerned and we need safeguards.
So, there are ways to do that, and there's a lot to talk about, but it's not all that complicated. It is just a matter sitting down and thinking about, you know, what's best thing, and obviously including the person who is affected, who is turning 18. Or older. It happens to be 18, and maybe people in their 20s haven't done anything, 30s, but it's just 18 is important because it's the legal adulthood.
Under different types of guardianships, and medical, other areas, free from guardianship, and the person is making their own decisions, may want or need assistance. No problem. That can all be granted because the person can say, here is who I trust.
So, sometimes, and you may hear this tonight, sometimes there's something called a Rogers Order. And that's really only in a guardianship. Whether that guardianship is limited or plenary/what we say full guardianship, how it is better known.
A Rogers Order is a very specific order, and because of a certain class of mental health medications. They want people's rights to refuse those, to have the least possible dose. There needs to be substituted judgment. Even though there's a guardianship. That decision of a certain class of mental health medications, and and so we have a situation where the courts will actually many times have a different guardian. The court and guardian do a substituted judgment, decide what that person would accept and not accept
Would accept or not accept, based on the person's wishes. If they understood everything, what would they choose. Not what is in the person's best interest, but from the perspective of the person would they choose these meds. It is a way to protect people from medication if they don't want it, or overmedication. But honoring the fact what is the proper dosage, etcetera. That's in a nutshell Rogers, regarding a certain class of medication for someone.
Then we look at the most restrictive, and the most reSTRIFKS is called plenary, or full guardianship. I want you to understand something that's important, and I know that Morgan is going to touch on this, another speaker, presenter tonight, but people think, I've got full guardianship and now I've got control over everything.
Well, in 2011 some things shifted. The courts don't love plenary guardianships unless absolutely necessary. That was the way to go, plenary? Sure, why not. It's like wait a minute, what can this person do? What skills do they have? What abilities do they have?
So, the individuals there's a carve out of what that person can do, ought to be able to do.
A full guardian is not necessarily granted a power of finance. Over the finances. They're not necessarily granted power over property. And they're not at end of life or very very major decisions, they're going to have to get their authority expanded in a court of law. And that's often a surprise to a person who thinks they're a full guardian, I'm going to tell you what to do.
So, there's limitations and we'll talk about it in the presentations, there are limitations on that perceived full guardianship or plenary guardianship. Why? The civil rights of a person with disabilities is important. The courts are always trying to say how do I balance the person's civil rights with a declaration of incompetency to make their own decisions? We need to balance that out, so it's critical.
So, those are some terms that you're going to hear tonight. We wanted to do an overview of those. Certainly there's probably going to be some questions. No questions -- these are large topics in and of themselves, I'm trying to anchor you and makes it clear. Thank you for your time and I hand it back to Lee
LEE LARRIU: Betsy, thank you so much. I definitely learned a lot myself.
So, we're going to turn it over to our statewide self-advocacy association, Massachusetts Advocates Standing Strong. I'm going to let them introduce themselves, stop my share, and I'm looking forward to hearing what they have to share tonight.
BETH KOLLETT: My name is Beth. I am wearing an orange shirt and I have brown hair.
About me? I am a self-advocate and board member with Massachusetts Advocates Standing Strong, representing the Central region.
I also serve on the Board of Directors with stepping stone community theatre.
I enjoy candlepin bowling and being involved in my community.
I believe people with disabilities should have control over their own lives.
My Supported Decision-Making experience. I use a Supported Decision-Making Agreement instead of guardianship.
My mom supports me through the agreement, but I make my own decisions.
I did not want to have a guardian, because I wanted to make my own choices.
My parents always wanted me to have control over my life with support, instead of guardianship.
My story. When I was preparing to attend a residential high school program in the late 1990s, guardianship was strongly encouraged for residents.
My family wanted to find another option that would still support my independence.
Everyone worked together to draft and edit my Supported Decision-Making Agreement, or SDMA. So, everyone understood the agreement.
On August 24th, 2022 I officially signed and notarized my Supported Decision-Making Agreement in braille.
BRIAN KREMER: Hi, I'm Brian Kremer. I'm a middle-aged man with brown hair, wearing a black shirt, I have blue eyes, and I'm here with my colleague coral.
CORAL FRIESNER: I'm the operations manager here at MASS. I am a white woman in her 30s with brown hair and I wear glasses and I'm wearing a black dress today.
BRIAN KREMER: And so I'm here to just ask some questions to Beth while she's sharing about her experience.
Beth, and so what steps did you or your parents take to find other options? Were there specific resources that helped you find the right alternative for you?
BETH KOLLETT: To take steps, I -- at central meeting they talked about Supported Decision-Making.
And I went to a conference in 2017 with my mom and went to the Supported Decision-Making workshop to learn more about it.
BRIAN KREMER: Great. And so when you say everyone that helped you, were they all family members? Or were there other members of your team that weren't your immediate family?
BETH KOLLETT: I had -- there were other members on my team. I had, on my team I had self-advocates, I had a lawyer to help me and my mom understand what the process was about, and I even, uhm, gave my SDM Agreement to my doctor. He's on my team. He did not -- he did not sign, uhm, the agreement, but he has a copy of it.
BRIAN KREMER: Great. So what do you want people to know, Beth?
BETH KOLLETT: What I want people to know. The process of setting up a Supported Decision-Making Agreement, or SDMA, it was difficult and -- and long, but worth it.
Supported Decision-Making helped me to become a strong advocate for myself and others.
People with disabilities can make their own decisions when they have the right supports -- right support.
Supported Decision-Making gives people more independence, while still allowing trusted supporters to help.
BRIAN KREMER: So Beth, what made the process long to get an SDM Agreement?
BETH KOLLETT: What made the process long was, I had to attend a lot of meetings, and they did ask a lot of questions, of what areas you might need -- what areas you did not want help in. And one of the areas was, for me was relationships.
BRIAN KREMER: That's one of the areas you didn't want --
BETH KOLLETT: I did not want -- yes.
BRIAN KREMER: Thank you, Beth.
BETH KOLLETT: You're welcome.
LEE LARRIU: I'm trying to find -- here we go. Thank you, Beth so much.
BETH KOLLETT: You're welcome.
LEE LARRIU: Really appreciate your story and your insight. So, next up we have Sandy Heller and her son Craig. They're going to be talking about supported -- woops, sorry about that. A little sneak peak. Supported Decision-Making and alternatives including HealthCare Proxy and Power of Attorney. Sandy.
SANDY HELLER: Thank you, Lee. Thank you everyone for attending tonight. I first want to introduce myself, and my name is Sandy Heller, I'm a woman over 60, blonde hair, blue eyes wearing a dress. I'll introduce you to the stunning gentleman next to me Craig Kinney, who is my son. He is a 37-year-old man with -- used to be blonde, now turning brown, hair, blue eyes and born with Down syndrome.
So, to start out, just a little bit about why Craig and I are doing Supported Decision-Making, and it really was Craig that promoted it all.
So, Supported Decision-Making, or SDM, promotes self-determination, control, autonomy and independence, and that is something that I've always, always strived for Craig to have. Even at a much younger age than 18. You know, he was fully included in school, with many years requiring additional medical intervention with one-to-one nursing to be able to attend, but that didn't stop us from pursuing him to have a fully inclusive school education.
And attending his meetings and directing what his goals would be.
He started working at the age of 16, and has continued throughout his life.
Next slide.
So, how does Supported Decision-Making work? Individuals with a disability receive necessary supports to make a decision on issues big or small affecting their lives.
Individuals choose one or more trusted people to assist them to make decisions. It can be friends, family members, relatives. It could be whoever they choose.
And relationship between the individual and supporters is built on trust and commitment. Craig has had some supporters in the beginning, and he's changed those supporters over the years.
Some have remained constant, from the very start at 18, and others have changed.
SDM recognizes that will and preferences are the core of decision-making abilities. SDM is consistent, consistent with concepts that people may be competent in some areas, even if not in others.
Next slide.
Person-centered practices that align with Supported Decision-Making practices.
Social inclusion. Extremely important for Craig and has been all his life.
Person-Centered Planning. Craig has used Person-Centered Planning throughout his entire life, from the age of -- I think it was second grade when he had his first centered planning. Which really develops a team to be able to focus on what his goals are. Even at a young age. And he just had one a few years ago again. He chooses when he wants to bring people together to help him on his journey of where he wants his goals to achieve.
Upholding Human Rights. Extremely important for Craig. He wants to be respected and be a member of society and be able to choose what he wants to do, like any other person.
Self-determination. Circles of support. Intentional networks. We've been so fortunate to have that involvement with Craig, that he's had all kinds of different supports. From people very, very close. Each one of those circles, if you can envision circles of support, you have people, relatives and families, acquaintance, friendships, and people who don't know you that well. Every single circle in Craig's life is filled.
Targeted individualized support. There are times in every part of Craig's day he may need targeted individual support to have somebody explain the situation, have him, uhm, ask a question, and help Craig answer whatever it is that he's needing to discover.
The least restrictive practices, which is something I've always truly believed in Craig's life, from the time I gave birth to him, you know, he should be in the least restrictive practices first before looking for anything that was different.
And using natural supports. You know, we are all fortunate human beings in the world that rely on natural supports all of our lives, and I wanted him to have that same type of life as you and I have.
Next slide.
Decision supporter role. What is the role of the of the supporters? With each person practicing support decision-making, it can vary, look differently and it can evolve over time. Supporters of an individual with a disability, they discuss possible decisions and ramifications of those choices and decisions. It is not up to the supporter to make the choices.
It is up to the supporters to help the person learn about choices in their decisions.
An individual with a disability reaches their own decision on their own. Supporters honor and respect those decisions, and no requirement to agree with a person's preference or decision.
There are times, and I'll be honest I am a supporter, I do not agree with some of his decisions, but I do need to honor that. As I would with his two sisters.
Where necessary the supporters have to communicate the person's decision to involve community members. That's important to know. As Craig will be speaking in after one more slide, uhm, Craig has always had articulation speech problem since he was very small.
So, very often people assume that if you don't understand his speech, he may not understand, and that's an incorrect rationale to think about. He understands. He just has a speech impairment. Just like somebody might need to have sign language or the CART to be able to read what's is going -- what we're speaking about.
It is about respect. Hard, though it may be, a person's right to make a bad decision. And I've said it all the time I've spoken about supported decision-making, that, you know, sometimes as any grown adults, friends, family members, they might discuss something and they're like, that's not the best decision, or I would never make that decision. We have to then honor it, though. We may give our advice, but we also need to honor what those decisions are.
And honor the dignity of risk. The person has the opportunity to try new things. To test limits. To discover capabilities. When we were coming -- when I was coming to his home, because he lives in his own house with a roommate, we went by a tattoo place. I said, hey you want to go there? He said no. [Laughing]
So, you have to acknowledge the risk of failing.
And falling. And the courage to persevere and to keep trying.
Next slide.
CRAIG KINNEY: Hi. Hi. My name is Craig Kinney. I am 37 years old and I have Down syndrome. I live in my own home with a roommate. I have a Supported Decision-Making Agreement, a HealthCare Proxy, and Power of Attorney. These papers help show people that I make my own decisions, and my supporters help me understand. My supporters are my mom, my sister, Katherine, Chris, they help me with choices I decide.
SANDY HELLER: Next slide.
CRAIG KINNEY: I had a big medical decision-to-. I had tracheostomy for five years and many surgeries. Even when I couldn't speak, my supporters explained things to me. Sometimes I needed to hear things in my mom's voice. They helped me understand what the doctors were saying. I always got to make the final choice.
SANDY HELLER: Next slide.
CRAIG KINNEY: SDM is like a GPS. It helps me understand choices I make. I drive my own life.
For example, I choose where I go on vacation, activities and how I spend my money. I make my own decisions.
My supporters help explain things I don't understand. But I decide! And if something doesn't go right, I try again.
SANDY HELLER: Next slide.
CRAIG KINNEY: I started using SDM when I was a teenager. Back then, we didn't use the name SDM, but I always made choices with help from people who understand me.
Later, I signed a formal SGM agreement through a Pilot Program. It made what we were already doing official.
A good supporter gives me choices. They talk clearly. They help me stay calm. And understand things. They respect what I want. My family is very important to me. My mom never wanted guardianship for me and she always wanted me to charge of my own life
SANDY HELLER: Next slide.
CRAIG KINNEY: I want people to know that I am capable. I just need help understanding things. People should help me decide, not decide for me. SDM lets me live the life I want. Thank you.
SANDY HELLER: And again, this is something that uhm -- you know, Craig and I and -- I've been honored to help him through his life journey to practice Supported Decision-Making.
LEE LARRIU: Thank you both. Thank you, Sandy. Thank you, Craig. Always appreciate listening to your story.
Next we're going to turn it back to Massachusetts Advocates Standing Strong. Let me stop share.
And Daysiree and Sam, you'll be going back-to-back
SAM PASTER: Okay. Thank you.
DAYSIREE PEREZ BATISTA: Okay. My name is Daysiree Perez Batista. I am wearing, uhm, a very colorful dress. Light-skinned Puerto Rican wheelchair bound. With glasses.
About me. I am the Vice President of Massachusetts Advocates Standing Strong, MASS, and a Peer Trainer.
I am also a Human Rights specialist with U Mass.
I work with students at Lawrence High School every three months.
On the weekends I like to watch TV, especially Lifetime.
I enjoy advocating for people with disabilities.
Guardianship experience. I only need a medical guardian. I can make other decisions.
My guardian is an attorney who helps me understand medical decisions.
I asked for a medical guardian when I was 22 -- 22 years old. At the time I was dealing with medical challenges and needed support.
I did not feel like I had enough trusted -- trust and family support for my healthcare needs.
BRIAN KREMER: This is Brian Kremer, again. The Executive Director of Massachusetts Advocates Standing Strong. I'm just here to ask a couple questions, Daysiree, about your experience with medical guardianship.
So, how did you select your medical guardian? Where did you have to go, or who did you have to call?
DAYSIREE PEREZ BATISTA: When I was dealing with a very serious health issue, I decided to let my social worker know at the time that I needed a guardian to help me to make medical decisions because it was way too much for me.
At the time I was not -- uhm, I was very sick and needed someone to sign for me. So, uhm, there was a -- it was a good decision for me to have a guardian at the time. I still do.
BRIAN KREMER: And so did you have a chance to interview them? Or how did you get in touch with them?
DAYSIREE PEREZ BATISTA: I, me and my social worker, interviewed him, and I liked the way he -- his approach, and how he was willing to help me with my medical decision. So I did -- I did pretty good. It was a great decision.
BRIAN KREMER: Thanks, Daysiree.
DAYSIREE PEREZ BATISTA: Yep.
BRIAN KREMER: So what is working?
DAYSIREE PEREZ BATISTA: My medical guardian, and I work together as a team. He helps support me with my medical decision. Instead of making every decisions for me, having a medical guardian has helped me to feel more secure and supported.
Choosing a medical guardian was one of the best things I -- best decisions I ever did.
BRIAN KREMER: And this is Brian again. Daysiree, so when you work as a team with your medical guardian, what does that look like? For example, does he come with you to all your appointments?
DAYSIREE PEREZ BATISTA: No, he does not come with me to all -- all the appointments. I usually call him and let him know that if I'm going to have a procedure done or any type of medical reason, any type of medical stuff done, I let him know, please sign my paper, I'm not signing -- I'm not signing this. Uhm, I don't feel comfortable. So he signs all my medical decisions.
And also, if -- if for example, I'm not feeling well and I have to go to the ER, uhm, he lets me -- signs a form to treat. So he -- I let him know, but he also lets me know that he -- that he is my guardian and he supports me through every decisions I make. Because that -- because he's all the way in Wrentham, and so he can't sign for me and so I sign for myself. With his permission.
BRIAN KREMER: So what is the plan if your current medical guardian John can't do it anymore?
DAYSIREE PEREZ BATISTA: My plan is to go back to court and tell the judge or -- I don't remember who I talked to, uhm, to let them know that I do need another medical guardian and I'm willing to take that step.
BRIAN KREMER: Thanks, Daysiree. What else do you want people to know?
DAYSIREE PEREZ BATISTA: Different people need different levels of support. It is important that people with disabilities still have choices and control over their lives.
Support should help people make decisions, not take their voice away.
LEE LARRIU: Excellent job, Daysiree. I just needed a moment to be un-muted. So we're going to stick with Massachusetts Advocates Standing Strong for one last panel story, and we'll turn it over to Mass Advocates.
SAM PASTER: Hi, everyone. I'm Sam Paster, and I work for Massachusetts Advocates Standing Strong. It's good to be here.
About me. As I said, I work for Massachusetts Advocates Standing Strong as a peer TRAERN for people with disabilities. I previously worked at the State House as a legislative assistant.
I currently serve as the -- on the Board of Disability Commission of Boston.
Having a voice is important to me because I want to have my needs and opinions to be heard.
My guardianship experience. I've had a guardian since I was 18 years old.
My mother is my legal guardian and my medical guardian.
My father helps me make financial and support -- financial support and decisions.
My guardian wants me to be involved in making my own choices.
BRIAN KREMER: Hi, again. This is Brian Kremer. Sam, just a couple more questions.
SAM PASTER: Yeah.
BRIAN KREMER: Were you in school at the time you were assigned full guardianship.
SAM PASTER: Yes, I was in school when I was assigned full guardianship.
BRIAN KREMER: Do you know if your teachers or anyone in your school had any kind of influence on the decision for guardianship?
SAM PASTER: My teachers. And my parents.
BRIAN KREMER: Were you a part of that decision, when guardianship was assigned?
SAM PASTER: No.
BRIAN KREMER: So what's working --
SAM PASTER: What is working? I make my own daily decisions. I decided where I want to live and work and other parts of my daily life.
My family supports me and listens to my opinions.
BRIAN KREMER: Sam, do you know if there's a plan if your mom can no longer be your guardian, or if the guardianship is -- if guardianship hasn't been overturned?
SAM PASTER: I'm not sure.
Challenges and concerns. One challenge for me is the Rogers Order process connected to mental health medications is very difficult.
I also go through annual testing related to competency. These experiences -- these experiences are a part of why I was looking into Supported Decision-Making.
It is important that people under guardianship still have their voice heard.
BRIAN KREMER: Hi, this is Brian again. Sam, can you tell us more about why going once a year for the annual testing bothers you?
SAM PASTER: Because it takes a long time. I'd rather be working at my job.
BRIAN KREMER: And you brought up the Rogers Order. Are there any other challenges besides the Rogers Order that can make -- that makes you think SDM is a better option?
SAM PASTER: Because I want to be a better self-advocate and with SDM I can do that.
Thanks, everyone.
BRIAN KREMER: Thanks, Sam.
SAM PASTER: No worries.
LEE LARRIU: Thank you so much for all of our panelists so far. We have one more to go. And this is Morgan Whitlatch. I'm going to turn it over to her. In one second.
MORGAN WHITLATCH: While she's doing that I can introduce myself. I am Morgan Whitlatch. Aim a middle-aged white woman with curly hair. I'm wearing glasses and a black outfit. I'm a director of Supported Decision-Making Initiatives and a senior attorney at the Center For Public Representation. We are a Massachusetts-based national advocacy center for people with disabilities. I'm really happy to be here.
LEE LARRIU: I'm trying to share screen but I don't believe I have permissions at the moment.
MORGAN WHITLATCH: Okay. Well, I can start. You know, there are a lot of myths out there about guardianship and alternatives.
I've been asked to dispel some of these now with some facts. And already my fellow panelists have already dispelled some of these myths, and so we'll just be reiterating some of them and really thinking through some of the others.
The first piece, and Betsy said and Sam did too, 18 years is a J magic number. One of the facts to keep in mind parents are not automatically the legal guardian when their child with disabilities turns 18 years old.
I found some families do not fully know this particular fact. Because of the years of advocacy they've been doing for their children, and perhaps because of cultural considerations and the way the lawworks in Massachusetts is different.
It is important to know in Massachusetts when a person turns 18 they become a legal adult. The law says they now get to make their personal decisions. Parents don't make the decisions for them anymore. Even if they have a disability.
School call this time transfer of right. As Betsy said, it could be an intimidating time. When a family calls me and says they're the legal guardian of their son, and I ask them how old are they, and if they say 18 years old, and I ask if they went to court, and they say no, I know they're not the legal guardian
The person has to go to court, convince the judge the guardianship is needed, and get a court order.
A common myth is if an adult with a disability can't make a decision independently, they must need a guardian. That's not true. We have to remember we all need help making decisions, and sometimes people with disabilities may need more or different help, but it doesn't make they can't make decisions at all.
None of us make decisions independently, or in a vacuum without help or advice from anyone. As Betsy said there are lots of alternatives to guardianship used by people including people with disabilities who may need with decision-making or trying to plan for their futures.
That can include Supported Decision-Making, and healthcare proxies, and Representative payees and more. Maybe before making a decision a particular person needs help from people they trust to understand it.
Well, that's Supported Decision-Making. Maybe the person can voluntarily pick someone to make the decision for them when they can't, like through a HealthCare Proxy, or Power of Attorney. These are all options to consider when someone needs help making decisions.
The next one can be hard for people to hear. Guardianship doesn't guarantee safety. So, when a family member, a parent calls me and says they want guardianship, I always ask why, and that's because I want to know what their reason is to think they need it.
Guardianship can be the right tool. Under certain circumstances for people. But it doesn't magically solve all problems. A parent tells me they want guardianship to keep their child safe, I understand. All parents want their children to be safe. Every parent has legitimate reasons for worrying and caring about safety.
I know of no studies that have found people under guardianship are automatically safer. They are still at risk of being hurt or abused by bad actors, and even more so if they're isolated from the community.
On the flip side there are studies that show people with disabilities who have greater self-determination, who are actors in their own lives, are able to better avoid and resist abuse.
And there are studies that found that people with disabilities who have more community connections, more supporters around them, are indeed safer.
So, the real question is that we need to explore in this case is what is the cause of concern around safety. What kind of safety planning, services, supports can help to address that concern.
Betsy touched upon this and I won't go into great detail, but I'll tell you something about the magic of release of information forms. Guardianship is not needed to access adults medical or educational information or go to medical or educational planning meetings.
What happens if a doctor says, mom, I can't share information with you about your daughter because she's an adult now. That's a practical problem that easily has an easy solution.
Release of information forms can be signed by the adult, including people with disabilities, who want to share their otherwise confidential information with family members and supporters. It is called HIPAA release form, and in the educational confirm it is called FERPA.
What about medical appointments, I.E.P. meetings? Any adult student or adult patient at a doctor 's office can invite someone, including their parent or their support person, to attend those kind of meetings or appointments for them.
Next slide.
LEE LARRIU: It's not moving for me here.
MORGAN WHITLATCH: I wanted to make it clear guardianship is not without its down sides. There are serious ramifications important to keep in mind, and I sometimes found families don't appreciate that, haven't been given the information they need.
First off, once a guardian gets guardianship order from the judge, the case is not over, it continues. The court will become part of the guardian and in the person's life while under guardianship. While that can feel okay for some people, it can fuel intrusive for others. Guardians have legal responsibilities after the guardianship is ordered. And they have to file reports with the court. If they don't, they can get in trouble or be removed as guardian. Judges can order more hearings and monitoring and remove and replace guardians. Just
Something to keep in mind.
Another downside it can be difficult to end. Even if the person, the guardian, and person subject to the guardianship wants it to. It is the judge that gets to decide. The reality is judges don't under guardianships once in place. It can be do you know, but it can be hard
For example, in the adult with disability needs in-house supports paid through you governmental agencies lie DDS, there are legal restrictions guardians serving as paid caregivers. I find family members who provide care for members all the time not to be able to qualified to be paid at all because they are also the person's guardian.
Betsy touched upon this next fact about guardians not being all powerful. And that's true. There are restrictions on the decisions the guardians can make without going back to court. And as -- you know, as Sam emphasized with Rogers orders for ex-poured treatment like antipsychotic medication, you have to go to court every year. It is reviewed every year, right? Those are important things to keep in mind about guardians not being all powerful.
There's one I want to focus on now. Guardians are required to the extent possible to encourage the person to participate in decisions, and to act on their own behalf, and to develop and regain capacity to manage personal fairs. Daysiree described how her medical guardian doing it with her. It is not only an important requirement in Massachusetts, but a nationally recognized best practice for guardians.
And, you know, I sometimes see people misunderstand the role the guardians are supposed to play in people's lives.
Another fact to kind of be thinking about, too, is that as Betsy alluded to a HealthCare Proxy is a powerful tool, and it is actually stronger than guardianship when it comes to medical decisions.
I just got a question about this just the other day because I think a lot of people think guardianship is stronger than anything else. And that's just not the case. Guardians cannot revoke existing HealthCare Proxies. And there are lots of medical decisions that guardians can't make without getting special authority from the court.
We've already talked about you don't have to be a guardian to be a Representative Payee. I think stipes people get incorrect information from Social Security field offices about this, and so I really want to emphasize that.
In fact, even if you were the guardian, you would not be automatically appointed as a person's Representative Payee. The Social Security Administration appoints them and even the guardians have to apply to be one if they want to be one.
The other thing I want to focus on for supported decision -- is Supported Decision-Making. You know, it's not only for people with certain kinds of disabilities.
I think that's a common myth that's out there. A person's ability to use Supported Decision-Making isn't determined by IQ or diagnosis. I personally have supported people using Supported Decision-Making who have intellectual disabilities, who have autism, psychiatric or mentalor behavioral health disabilities and don't use speech to communicate. Even with dementia. It is a tool in a toolbox that can work for people with many kinds of support needs.
Even though you heard from some people who use formal decision-making and have a formal agreement, I want to emphasize it is not a requirement. It can be very helpful, as it was the first demonstration projects in Massachusetts over a decade ago.
But most people right now use Supported Decision-Making informally, without a formal agreement, and that's fine, too,
A lot of people are using supported decision-making but not calling that. You know, it's a very flexible tool that can look different for different people.
Finally, it isn't on the slide but I want to highlight this, Supported Decision-Making is an existing legal option that people can use.
It is true that legislation formally recognizing Supported Decision-Making hasn't been passed yet by the Massachusetts legislature and there are coalitions fighting for that to make it easier for people's right to use Supported Decision-Making to be respected, but it has been formally recognized in Massachusetts in other ways.
Over a decade ago Massachusetts was one of the first of a series of former projects that supported people with disabilities in using Supported Decision-Making in their lives, and it resulted in an order to terminate a guardianship in favor of Supported Decision-Making in 2015. So that's over a decade ago.
In addition, Supported Decision-Making can be seen as a reasonable accommodation for a person's disability under federal and state law.
So, these are important protections for people seeking to enforce Supported Decision-Making arrangements now.
Thank you very much.
LEE LARRIU: I'm actually going to keep you going Morgan. If you just want to highlight some things.
MORGAN WHITLATCH: Yes, this is exciting. This is exciting because the MDDC GAIN has launched a website with a lot of very interesting tools and resources, less restrictive options, that is linked to here.
You're going to see tools from many different partners that are talking today there. I NURNG encourage you to take a look.
There are many resources and MDDC GAIN is working hard to make sure you have the information you need to know about them.
Thank you so much.
LEE LARRIU: Thank you so much for everybody for all of your wisdom and opportunity for us to learn about alternatives. We are going to stop the recording at this point so that people can answer and ask questions freely without worrying about being recorded.
Thank you so much. Okay. So I do see some hands that popped up.
>> Lee, did you want to turn on the chat.
LEE LARRIU: Yes. Please. We'll turn on the chat. If people were trying to do that earlier, now is your chance.
>> I think you have to turn that on. Maybe.
BRIAN KREMER: It's all set.
>> Thank you. Thanks, Brian.
LEE LARRIU: Okay, and so I see Paula Collins with her hand up.
>> Hi. So, uhm, I don't think the chat is turned on because I put something in the chat earlier that it's not -- it still says I can't send it.
A couple of questions. I think when you were talking about safety, I think a lot of people, uhm, do guardianship because they're concerned about financial, somebody getting -- taken advantage of financially.
My first question is, what kind of safeguards are there for people if they're doing Supported Decision-Making; let's say somebody scams them and they doesn't come to their network for support and they're legally responsible for the financial, whatever it is, they got into?
MORGAN WHITLATCH: I want to say, people don't go around -- I think that's a valid concern. People are, of course, worried about undue influence. Scams are proliferating around. There's a lot of concerns out there. But I do want to emphasize that people who are under guardianship or conservatorship, and conservatorship basically means for people with more significant release sores, financial resources than a Representative Payee, they don't have a G on their forehead, off C to indicate it. Scams can happen there, too.
They can go to court to seek to remedy that, but it also is a challenge and involves the court system
>> I think for supported --
MORGAN WHITLATCH: For Supported Decision-Making you don't have that court, that's what you say? You don't have that court to go to to protect people from scams and those kind of concerns.
And that's true. With Supported Decision-Making you don't have that. People can always bring those actions still, legal actions on behalf of people to say, this is a scam, this person didn't understand the contract they signed. They can always bring those actions and it can still involve legal matters if there is a scam that's like that.
I think the real safeguard for supported decision-making is trying to promote more supporters in people's lives. So this can actually serve as kind of checks and balances against each other. I'm saying this because I think any legal tool, be it Supported Decision-Making, powers of attorneys, Representative Payees, can be misused by bad actors, and so really what it is is about creating safeguards around the person in the forms of additional supporters and checks and balances that kind of keep people safer.
You're right that everybody can be vulnerable to kind of financial abuse regardless of what tool is ultimately being used, and we do have to think really proactively about what are going to be the safeguards that are right for this person that will allow them to have this -- you know, our goal should be to try to maximize self-determination, while recognizing the realities of the world we live in.
>> Could I add quickly to that, or not.
MORGAN WHITLATCH: Betsy, please.
BETSY JOHNSON: Ms. Collins, too, Morgan has done a great job responding, but if I could give one example that could be of help, I hope it is, that is my intent. I'm Power of Attorney, to a person I know quite well and that person was unfortunately undereducated, doesn't really read well, and a person in the Deaf community, and so does require the use of sign and different options for that person to understand.
So, imagine my surprise, because this person is quite capable, drives a car, has a house, and imagine my surprise when pulls up, has a grand brand-new car, doesn't want it, got scammed, and furious. He wants the car returned and stop the bank loan. There's your scenario. A nightmare. The bank is involved, the management of the car dealership, and I have a Durable Power of Attorney and hoping the document will hope.
Because, you know, this is what Morgan is talking about. We have different support options.
So, if I was guardian it would be the same problem I would have, to figure this out what am I going to do for my friend. I go into the dealership, of course with my friend, and the car is there now, we drive the car and it is now at the dealership. I go in, and I must confess it took me a couple of hours to have the general manager calm down with the fact we were going to turn a car in that had just been sold, and also the bank.
But because I was able to say to them in -- I wasn't fighting to them, a kind way, and re respectful, my friend is right there, and understand that there was not proper accommodation for him.
And an ability to sign that contract. He is capable to sign a contract when things are explained well, but this is not that. And so, it took a couple of hours. The general manager, himself, called the bank and said the Durable Power of Attorney was not present, we did not do our job, con FEFD about that. The bank said, canceled the loan. The car was turned in.
I had extreme power with that document. I don't know that a guardianship would even have had that much power. Because my friend was legally competent, had assigned me to protect his best interest, I was able to do that under a durable power of attorney.
I want to relieve people of the fear of, what are we going to do? My loved one went on the internet and scammed with a credit card. Okay, your Power of Attorney. Whether a guardian or not, it is one of the myths that Morgan really hammered home, and I -- I really appreciate that. Guardianship is simply not as strong as we all thought it was. I think a judge in a black robe with a gavel is strong in my world, but not so much in the real world.
People can get in all sorts of trouble. People with dementia. People working every day will get scammed. As Morgan says, it happens -- it can happen to all of us.
I wanted to mention quickly the power of a Durable Power of Attorney as an example. I hope that helps. Thank you
>> I'm still confused. If they have a guardian, they legally are not -- they can't sign a document like that? They're not legally responsible. I guess I'm not understanding --
BETSY JOHNSON: Morgan is right. Me on the internet and I'm under guardianship --
>> Let me give a different example. That example. He went in and signed a contract for a car and has a guardian, and the person you're talking did SGLSH.
BETH KOLLETT: Nobody had a guardian.
>> The contract is not legal because he can't legally sign a contract like that, is that correct?
BETSY JOHNSON: What I'm going to say is, the sense that this is a safeguard for someone is a bit of a myth. Because anybody can sign anything. I'm not saying to you, I'm under guardianship. I'm happily signing whatever. My friend is not under guardianship, it was Power of Attorney, and he requested my help. Of course I did that happen even if I had been the guardian, my friend could have happily signed a car loan.
The car people aren't saying, do you have a guardian? The scammers aren't saying do you have a guardian? Stop here, I didn't know. I'll stop scamming immediately. No. Legally speaking the person doesn't have the power to do the contract. Morgan, I hand it back to you as a lawyer. That's going to be undone no matter what I had
>> Right. It seems like it would be easier if you were a guardian, you had shared decision-making, to say, hey, he signed this contract and he's under guardianship and can't sign a contract.
Let me explain for me. So I'm not only the parent of a 28-year-old with Down syndrome, I also run a group that -- I run the Fitchburg work Inc. and we support aum in of adults, and guardianship has been a huge challenge in our office, with guardians either overstepping, or people who don't have guardianship overstepping. We're trying to find the balance. The reason I came on tonight -- and thank you to Sam for telling me you guys were doing this tonight.
We were in another meeting this afternoon, and I was like I need someone to help me explain to parents. And you made a comment about guardians are required to something, and I couldn't write it down fast enough. It was a quote I wanted to hang on to. Because we do have parents that are like, my son or daughter called to find out their own schedule and I'm their guardian I have to be involved. I don't think that's right at all
We're trying to find a -- a training or some kind of document that's going to explain the myths around guardianship, exactly what you're talking about. When you're a guardian it means you are doing this. It doesn't mean you have the right to do that. So, that's the main reason I got on this call tonight, and thanks to Sam and Daysiree and for alerting me.
MORGAN WHITLATCH: I think you're giving MDDC GAIN good ideas for resource developments, if that's what you're looking for to spread the word, Paula, and I appreciate you doing that. I think you raise good points and questions that come up within this context.
Just to, you know, piggyback on Betsy a little bit. The practical reality, I have seen people under guardianship subject to all sorts of abuses that have been financial in nature, that have been, you know -- you know, guardianship isn't -- in other words, it doesn't protect you from the scammers that -- by the time you've gotten scammed, that money's gone. You're not going to get that money back.
I think that's the piece we're trying to talk about. I think we're talking about practical realities. A little different than like the legal theory of capacity too sign a contract. I want to put it out there, too. Betsy, would you agree? You would? Okay, you’re muted.
BETSY JOHNSON: I agree. It's a done deal. Whether you're guardianship, it doesn't matter. You have signed that now you have to get out of it. Is it easy with the power attorney or guardianship? It is no strong with a guardianship. You have to get out from under that. The money is gone. It's awful. That's the reality, right? So, people are lulled into thinking, guardianship solves my safety issue.
As Morgan is pointing out in her talk and now, it is not as safe as people think. It is not going to prevent things. Things are going to happen.
So the Supported Decision-Making, whether that's with, without Power of Attorney, Power of Attorney is helpful, these things are helpful to protect any of us.
They also, like a guardianship, can be misused. Becomes unsafe for that person with a bad actor, as Morgan says. The same with the Power of Attorney, HealthCare Proxy document, the Healthcare Agent. When we talk about these, it is very important you establish who you trust.
And so guardianship is not as protective as people want to think, and there's a lot of myths out there Paula. You're right on to bring it up. I think it is a fabulous question you're asking. And we, as Morgan was saying, we do need to get resources to people so they understand how this is kind of a myth that, hey, I can get right out of this, I'm the guardian, they can't sign this. It's not that accurate.
MORGAN WHITLATCH: Sandy and Craig, what about you? You have a durable attorney and support decision-making.
LEE LARRIU: So you know there are many people in the chat asking from the Haitian community and I want to give opportunity to other questions.
SANDY HELLER: I'll go quick. Again, Craig and I have been practicing since he was 18 and he's going on 38 in a couple weeks. I've been working in the field helping other families going through the journey of a son and daughter with a disability and I've seen just about everything. There are always ways to protect people.
I protect my daughters who are grown women. I protect my son and he's a grown man. I hope that people close to me protect me. You can't protect them against everything. And there are ways to protect them, but give them the dignity to make their own decisions. There's ways to -- I remember, it had to be at least 20 years ago, I went with a woman. She was grown, she had three children, she -- you know, she really wasn't even under DDS, and but I could tell by meeting her that she may need
Need assistance understanding things. She knew what she was doing, she would get the checks from the credit card in the mail and writing them out and cashing them.
What I had to do and could do to her is support her going to court because she got charged, not paying it back. Again, going in front of the judge. She didn't have guardianship, supported decision, nothing. She was just a woman who fell between the cracks.
The court then, you know, discussed, met with her, you know, put on whatever it was they felt that she was going to need to do, whether it was to pay back a portion or none at all, but putting the emphasis of you could. That could happen to anybody who has a person under guardianship as well.
I can't tie Craig down even by a guardianship. I can't tie him down going on the internet, go into a store and buying something. What I can do is have more people surrounding him, supporting him, and he feeling comfortable he can make decisions. Sometimes he makes bad decisions. You ordered the movie on net flukes, it cost $30, and guess what? You have to work and give me the money. It's cause and effect
For my son Craig, it is his life experiences. He learns from doing. He learns from making mistakes. He learns from making successive. That's how I've learned in my life. I haven't always wonderful and done things I shouldn't have when younger, and my father would say I put him through the ringer, but I had family to support me when I made bad decisions.
It is no different for Craig with a disability or my daughters without one. I do hear it from families, we have to protect them, they're going to be exploited. If they're around other people I truly believe inclusion you really prevent a lot of abuse in all forms by having a person fully included in society. They're not left alone. They're not targeted by predators.
So that's always been a premise that I've felt very strongly. Whatever happened to Craig throughout his day, to this day, I'll hear from people. They'll say, I saw Craig he was doing this the other day, or I saw Craig at school, this is what happened, the teacher was yelling at him. Because he's surrounded by so many people that then are -- are there to in a lot of ways protect you. If I walk down the street and saw somebody being attacked, I would want to call 9-1-1 or find somebody to help him. It gives
It gives assurance of what we rant in our lives, to feel protected and wanted in our community. But I think there is a myth the guardianship does everything and PROEBTS PEM
>> Cynthia Lane put a two-part question in the chat. Many immigrant parents are taught they must fully protect and speak for their child for life. How do you explain the difference between guardianship and Supported Decision-Making in a culturally respectful way?
The second part: How can professionals better support immigrant families who may fear that Supported Decision-Making means abandoning or not protecting their child?
>> Those are superb questions, Cynthia. And I know you and I partnered with the Black autism coalition 509 thinking through how to tackle that kind of question. Because I do think cultural competency is wonderful. I put the chat in Haitian creel about supporteded decision-making a year ago, and we need to do work and make sure we're explaining it to families in clear ways.
One of the things I think about in thinking about Supported Decision-Making, and I have a lot of myths and facts, but that it means people have to make decisions alone, that somehow they are being abandoned, left to make their own decisions, and that's the opposite of what Supported Decision-Making mines.
It means people are choosing the supporters they want to be able to help them with decision-making. So, in that -- perhaps that's one way to talk about Supported Decision-Making.
LEE LARRIU: Liz, you had your hand up earlier. Did you have a question?
LIZ FANCHER: I have two questions messaged to me from the audience. The first question is: Is it too early to write down your thoughts so everyone is on the same page what you want to happen in case anything comes up along the way?
I don't know if you want me to repeat that.
MORGAN WHITLATCH: Is it possible to write down your thoughts and wishes?
LIZ FANCHER: Is it too early to write down your thoughts and wishes?
>> No, never too early.
MORGAN WHITLATCH: Never too early. In fact, there's a good exercise promoted by the ARC of the United States and their center for future planning that talks about that very thing. It is never too early to write down your thoughts how people need to be supported, etcetera, when you're planning for the future.
You just have to think a little bit when someone turns 18 about the legal -- the legal force of whatever you're writing. Now, if you're writing down what your intentions are, so you're educating people about how someone LIESHGS to be supported, etcetera. That's wonderful. If you think somehow that's going to govern once someone turns 18, and that's when you talk about the documents to fold those thoughts in.
It is never too early or late to plan, I will say this. I can't emphasize that enough
>> I agree a thousand percent. The issue is we don't teach people early enough. Our loved ones that may have some different challenges. We need to talk about these options of support that you need, whether you call that Supported Decision-Making, whether you call it just power -- Durable Power of Attorney using these healthcare proxies, whatever that is, teaching people about these documents.
Because in the adult world, just quickly here, the classic documents that you and I, as fellow adults, is classic Health Care Proxy and Durable Power of Attorney.
And so why is that different? So, people need support, and Supported Decision-Making is a great idea. Also, I have support with the power attorney. I have support with the Healthcare Agent I chose, or the it's and/or Power of Attorney I chose. It is about support, that's what we're talking about, and that can be 12, 13, 14.
You know, in life, every one of us, not just people with disabilities -- my dog is trying to chime into the conversation, apologies here. And so looking at, uhm, always talking out -- I work in medical ethics and I want everybody to think what they might want, but really to choose somebody they trust to help them in a medical crisis or a medical situation early on before there is a crisis, and that's why I say it is never too early.
You want to know what a person's wishes is in health, and change on a dime. At least a global look. Have the discussions, whether medical, whatever it is, early in. By the time the person is 18 the family has been talking about it and the needs and desires for the person for their needs in support. Which again all of us need that. It is a common theme and thread for all of us, not just people that happen to have a label of a disability. That's what I would say.
LEE LARRIU: Thank you, Betsy. I see we have 30 seconds left. I know we're going to be losing our interpreters soon. Sandy and Craig had their hand up.
SANDY HELLER: I wanted to mention. I saw in the chat from Dianna they wanted the Supported Decision-Making, people practicing that are still having it being, uhm -- uhm, kind of -- not looked at as authentic or real when it comes to other government bodies, such as the Department of Education, Department of Developmental Services, medical facilities.
And I agree with that, that we need to work at having this. This is a legal document. It's legally you're able to do supported decision-making. It doesn't require a court appointed, uhm, decision making, but it is a legal thing that anyone can practice. You and I practice Supported Decision-Making, as Betsy and Morgan said. I think we have to emphasize families and individuals that I have come across who have had the difficulties, as Morgan has said, it is accommodation.
And under the 504 accommodation that that person has a legal ability to have anyone they want with them to help them in any situation, and whether it's with a state agency, with a medical facility, or, you know -- you know, going and making decision to jump out of a plane. They have that ability. I want to make sure people know it.
The last thing I want to mention, because many people ask who is the supporters and how do Craig and other supported decision makers supporters. Craig has supporters, some family members, non-family members. Paid supporters, that he's chosen to have as a supporter. I want people to know it can be whoever they want.
LEE LARRIU: Thank you so much. Thank you, everybody -- oh, Tim has a question? Tim?
>> Hi, guys. My name is Tim. I'm going to make this relatively short. I just want to say great job to be everybody, and I just -- that's all I wanted to say. I just wanted to say thank you, everybody, on their presentation, and I just really enjoyed hearing everybody's story.
I am part of the Massachusetts Advocates Standing Strong. I am an officer. I am also a sergeant-at-arms for the Massachusetts Advocates Standing Strong. I am part of the Northeast Region. I enjoy coming to meetings. Well, I just wanted to say I have a great -- a great team, and I just enjoy -- I just enjoyed hearing everybody's stories. Thank you.