2023-09-18 00:00:00 - Joint Committee on Children, Families and Persons with Disabilities
2023-09-18 00:00:00 - Joint Committee on Children, Families and Persons with Disabilities
SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Welcome to the joint
SPEAKER2 - Mhmm.
SPEAKER1 - And welcome to the joint committee on children's family and persons with disabilities for, matters related to the, department of developmental services. I'm Jay Livingston, the house chair. And today, I'm joined by my Senator Co chair, Senator Kennedy, the ranking Republican member, by the Honey Buck. Trust me. And, Representative Moran.
Oh, and, representative of Labouf is doing this virtually.
I'd like to thank, Carl Richardson for making this area accessible. There are cart services available. For the hearing, but if people require ASL interpreters, please let us know. We don't have an ASL interpreter for the hearing. But we do have 1 that could be available for an individual's testimony.
Today's hearing is is hybrid and bills will be called in the order in which they're they're they were displayed in the hearing notice. But please note that elected officials we typically allow to, skip the line. If you've signed up to testify this morning, I'll call your name in the order in which you signed up by the bill number and, time permitting. If121 you didn't sign up today, We'll let you testify at the end. We limit testimony to 3 minutes per person or 6 minutes a panel. And each person is only allowed to test 5 once. Anyone can submit written testimony at any time to our committee. And in fact, it it's often helpful to have written testimony, even if you testified any person, And if if you're testifying on multiple bills also joined by I, vice chair, representative of Genino. If you're testifying on multiple bills, I'll call the first bill, but when you come157 up, you can testify about all the bills, during your 3 minutes.
And then I'll swap back and forth between in person testimony and virtual testimony. If you have any questions, please let us know, or there's a lot of staff around at the ends, especially that, you can ask questions. Sonia Kennedy, do you have anything to add? They're not sure. Yeah.
Oh, and, representative Mendez188 is also joining us virtually. K. So the first bill I'd like to call is house 143 and act to promote employment for persons with disabilities. And the Person we signed up is appearing virtually. It's Carla Charter.
SPEAKER3 - Hi.
SPEAKER1 - Hi. Good afternoon.
SPEAKER3 - Good afternoon.
CARLA CHARTER - CONCERNED CITIZEN - HB 201 - SB 109 - I apologize. When I read the bill, it was different than I thought. But I just wanted to add what caught my eye right away with promoting, people with disabilities. I live in a small town in North Central Mass, the biggest roadblock we have, I'm disabled and I have a son who is, and the biggest roadblock we have to go into work is transportation. None of the agencies provide transportation, and we're in a very rural area, that's our biggest243 roadblock. And I just wanted to pass that along. It needs to be considered in our agencies that they'd be funding for transportation. Because we're in an area that even people that do have transportation, our town's working on it, but even people that do have transportation in rural areas, it's usually seeing new transportation which means they're done by 3 or 4 in the afternoon. SHOW NON-ESSENTIAL DIALOGUE
The other thing I wanted to comment on, you said to do multiple bills,
SPEAKER1 - Yes.
CHARTER - Well, I'm also gonna be speaking on the shared decision making. I can tell you firsthand that it works. I have a son with disabilities who needs some supports when it comes to decision making, very bright kid, they need some supports. And we've been doing that since he's been in school, considering his opinion, sitting down together, talking things through, He'll ask me if he's missing anything or if there's anything he should consider that he hasn't picked up. And every single time it works. We're respectful, we help him. We don't make his decisions for him, but we guide him a little bit, you know, if he's missed something, when he's talking about where he wants to live, I'll remind him that he needs a place with transportation. Things that maybe he hasn't thought about, but it works. And right now, we're in328 a situation where, I have somebody who is not intellectually impaired so he cannot get guardianship. I cannot get guardianship, I wouldn't want it because he's quite capable of making his own decisions with a few supports. The problem is if we're not guardians, he's an adult, if we're not guardians, he's considered fully consenting351 adult. There needs to be an in between step so that he can call358 us in, if he feels like he wants us360 there, to ask, you know, if362 he doesn't understand something, or if he wants us, if he wants support from us, there needs to be an in between step so he can ask for the supports if he wants them and have them there. That's all I wanted to say. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. I do any any members have any questions?
SPEAKER5 - Well, thank383 you for your testimony.
SPEAKER1 - Next, we have Bill H163 enact establishing a pilot diversion program for individuals with developmental disabilities and intellectual disabilities. And no 1 signed up to testify. Next, we400 have H201
and act relative to supported decision making. Oh, before I call on anyone, I wanna acknowledge that, representative Doherty has also joined us. So virtually we have 2 people that signed up to test 5 of this and also test 5 about senate 109. First, we have John Ford.
Sean Ford signed up virtually? Nope. K. If we call on somebody and and they don't answer, we'll go back to them at the end. The other person who signed up virtually, I apologize if I mispronounced the name, but it's Paul Lynn Zeikos.
SPEAKER4 - Also not.
SPEAKER1 - K. So next we'll turn to Senate 109. And act relative to supported decision making agreements for certain adults with disabilities. And
first, we're gonna call Anna Kreiger.
While Anna approaches, I'll acknowledge that, Repsola has also paired virtually. Thank you. Good morning. Good morning.
ANNA KRIEGER - MAC - SB 109 - Thank you so much for having me. My name is Anna Krueger, I'm the executive director of Massachusetts Advocates for Children, and I've been working on support and decision making for some time, and we're so thrilled to be here today. MAC, my organization, advocates for education and life opportunities for youth, and we're proud members of the Massachusetts Supported Decision Making Coalition, which is a broad507 based coalition, including advocates, guardianship attorneys, everyone kind of under one roof. So we're, really proud to be supporting this bill.517 What517 is supported decision making? You kind of heard a little bit from the woman who testified before me, but at its heart, SDM is something that we're all familiar with.525 Whether you're deciding to try new a prescription, to go to a new school, maybe to run for a public office., you don't do that alone. You talk to the people you trust about that. And that's really what supported decision making is about.
It's about empowering people with disabilities and older adults to544 be able to make their own decisions, getting support from the people that they choose and trust and designate as supporters, and help also with552 communicating those decisions. And so, we'll hear556 today the stories of how this works why this works, but I just wanna highlight before we get into all that, why we need a bill to pass. And lots of people have been trying this out and that's working very well, but we need a law in place for a number of reasons. We need to create a legal framework, as many other states have done573 and you'll hear more about that, describing what a supporter can do and what a supporter can't do. We've also been very clear about establishing safeguards to582 prevent abuse of the model so that no one who's misusing it can go about doing so. Right now those aren't in place so we don't have590 those protections and actually just SHOW NON-ESSENTIAL DIALOGUE
SPEAKER7 - sorry. A
SPEAKER6 - little feedback.
KRIEGER - And this bill, so this bill creates those protections600 and ensures that it's not misused. We also, it would include a training604 program which is really important so people606 understand what their roles are. And I have to end by highlighting it's really important for transition issues. Right now people are told, you know, you can either have guardianship or not. People need to understand there is something in between. And this bill would make621 sure that youth are for being told that as they transition and as they turn 18. And625 I really have to emphasize what's a really important point, I just needed you to understand, this does not take away anything from guardianship. You can still have a guardianship, you can even try out supported decision making, if it doesn't work, go get a638 guardianship. All this is saying is that for people who've wanted it, it should be available. That's all we're asking is for an additional option. We don't want to take away guardianship, no one here is proposing648 to do that at all. We're just proposing to add an additional option, and I know when you hear from everyone, you will be equally compelled that this is a model that works for people who want it. So thank you so much for your time. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Actually
SPEAKER6 - Oh, why am I, like
REP LIVINGSTONE - You said other states have done this? Which states do you think have done this the best?
KRIEGER - Oh, that's a really good question. Well, there's a few states, we kind of picked and chose when we were drafting this bill with Senator Lovely and Rep Finn, and Rep Garballey. And I think some of the best things that have been done, you know, in DC they have684 a model, and one of the people who helped to author that is testifying today. She requires that in schools that they educate, not just about guardianship, about alternatives. And that's something that not every state has included in their supported decision making legislation, I think that's really important. Another thing that I think a number of states have done that's really helpful is just define what a supporter can and can't do. So making it clear that a supporter, you know, is there to advise not to make the decisions for the person. Those are some of the ones that I think are really good. And Morgan will actually be testifying later. She's, who's consulted with, in fact, many of those states. So I really encourage her to answer that as well, because I think she has a lot to share. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Right. Thank you.
SPEAKER9 - Mark, is
SPEAKER10 - there any other questions?
SPEAKER1 - No, sir.
SEN KENNEDY - Thank you so much, and I wanna especially thank you for highlighting the importance of this or with transition age youth. I know in many of the agencies, also within our committee, that's an area that we as a commonwealth are very748 focused on. And this is an opportunity as young people age that we can help them, do so successfully. Is there any particular involvement with any of the other kind of state agencies, DCF, DYS, that would be necessary, in particular with this, or is it, could all be part of the agreements that are made?
KRIEGER - Yeah, so the agreements may be made independently. So a person makes an agreement just the way you and I might make a health proxy just independently. The agreement happens independently. It says in the law, hopefully the law, it says, what needs to be included in that agreement. Where the state agencies get involved is a couple different ways. The training program would be, you know, established through DDS, and then that would be, you know, potentially contracted out. SHOW NON-ESSENTIAL DIALOGUE
However, the issues. Sorry. Didn't you say that?
SPEAKER1 - Oh, so
SPEAKER12 - that's your
SPEAKER13 - technology. I just wanted to try that.
SPEAKER11 - They're always listening. Yes.801
KRIEGER - And so, and the other agencies that are referenced in the bill that have a key role would be, in terms of the safeguards. So there's, you know, reporting requirements. If there is, you know, some suspected abuse or neglect then that would go to the disabled person's protection commission or the elder abuse hotline and so those were the other case. But in terms of the transition youth piece, DESE would have to promulgate regulations within 6 months, explaining how in IEP meetings, they would need to, you know, what would need to be mentioned when they're talking about guardianship. And it's really, there are so many experts we have sitting in audiences.
I feel like I'm till her swift and845 there's something to be packaged to the 6th grade.
KRIEGER - And so any of us in852 this room, you know, we have both self advocates we'd be happy to advise any of the state agencies, you know,856 as they need to, you know, kind of adopt anything to meet the new requirements of the law. But it shouldn't be a huge burden. I'm sure. SHOW NON-ESSENTIAL DIALOGUE
thank you.
SPEAKER1 - Thank you.
UNIDENTIFIED SPEAKER - Well, just a couple quick brief examples of what we're talking about here.871
KRIEGER - Sure, yes. It's hard to do this in 3 minutes, so I appreciate the opportunity. I mean, you'll get much better examples from everyone behind me, but I'm also a supporter so I could be of someone in this very room. And so I can let you know that, you know, an example of the way I might provide support to someone, would be they tell me, I have this decision to make, and I'm kind of overwhelmed, and maybe here are some of the things I'm thinking about. And895 for this particular person I support, I might say, well, why don't we come up with a pro and con list, or what are the things you're most worried about? And just really help break it down in a way that works904 for that person. But that's just one person906 because every person is different. So, you know, I've seen people who are making big910 decisions around something like, whether to get surgery. And in that case, it might be a matter of getting the information in a couple of different ways and even talking to a peer who's also had that same surgery, which is really exactly what anyone would do, but just they're getting a little more support along the way to do that.
And then the other big example of supported decision making that's important is communicating the decision. Because sometimes people933 are able to process and understand the decision that they're making, but it might be hard for them to express that. So they might have someone who can be with them to help kind of prompt them, to help them explain the decision in a different way. And then, you know, there's lots of different creative things you're gonna hear about today from these amazing950 advocates and supporters who are here, because the people who954 are most inventive, I think, are the people who are using supported decision making and finding ways to make it work for them. SHOW NON-ESSENTIAL DIALOGUE
Thank you, sir. Yeah. Of course.
SPEAKER1 - Next we'd have a representative to ask you a question.
REP LEBOEUF - Great, thank you Mr. Chairman. I guess my question, if maybe you can walk me through with this legislation, you know, I'm thinking of a scenario where you have someone who, for example, I982 had a relative who had very severe dementia who, you know, would potentially be refusing any assistance, or someone who might have a severe medical condition where they're simply just refusing to take their medications, and aren't necessarily in a state to essentially make some of those decisions on their own. So if you1004 could maybe walk me through kind of what's that line that's determined between when is this type of model that you're speaking of versus, you know, when is the guardianship model necessary.
KRIEGER - You know, the interesting1017 thing about those examples is it's really no different than now. People are making that same kind of judgment call now all the time. They're just making it at the point of, does the person need a guardianship or not? And if the1028 person, if they think the person does, then they're1030 petitioning the court for a guardian. And in with supported decision making, you1034 know, in the example you gave, if it's someone who, you know, I would say the key point is, are they able to express in a consistent way their wishes, their preferences, their ideas. If they can't then I don't think supported decision making can work for them because then it's someone else making the decision for them and that's not what this is about. Then a guardianship would be the appropriate model to put in place. But it's really no different. It's just giving people kind of an extra thing to try before they jump to that guardianship point, if that makes sense.
LEBOEUF - And then, Mr. Chair, if I could just ask one quick follow-up question. So the arbiter of, who is the arbiter of determining when that model is implemented? And I guess when you're talking about, like, the more, like, extreme cases I've talked about, like, are there enough of these guardianship options available? Is that too confined? Kind of maybe walk me through kind of the varying levels of how that would all play out.
KRIEGER - Yeah, I think, you know, our guardianship system is not perfect and there's lots of people here can speak much more, you know, to that and some of the problems we face here in Massachusetts. But I think regardless, we have the system that we have. And I think that if what this does actually this will relieve pressure on the guardianship system because there are a lot of people in that system now taking their poor time, you know, making things take longer who don't really need really need guardianship, so I think that's one big piece long term. But in the short term to sort of practically answer your question, if you have someone who, you know, is not able to express what they want, who really couldn't use supported decision making, then your option is to pursue guardianship. Someone could petition the court, you know, with a lawyer to get guardianship just the way it happens today, it's really no different.
If that person wanted to try out supported decision making they could, but I think it would be, you know, in these extreme examples quite obvious that it's not gonna work for them. And then they're really in no different situation than someone would be right now. If someone who's not under guardianship, not under supported decision making, not really able to make decisions for themselves, they would need to pursue guardianship just the same as they would need to pursue, you know, right now they might be functioning with, like, a power of attorney and a healthcare proxy and just sort of you know, it's not going so well. And it would be no different than if you're adding, like, an additional alternative in there. It doesn't change the the dynamic. It's just sort of one more kind of thing that wouldn't work for them, I guess, is great. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER14 - No. Thank you very much. Yep. That does. Thank you very much.
SPEAKER1 - Oh, we've also been joined by your representative Ramos. Are there any other questions? Well, thank you for your testimony.
SPEAKER6 - So much. And I I hope all enjoy as much as I will. Everyone else will be with me.
SPEAKER2 - So just give
SPEAKER1 - me 2. Then next, we have a panel of Jonathan Gardner and Nancy Gardner.
SPEAKER4 - Destiny 23? Okay.
JONATHAN GARDNER - THE ARC OF MA - SB 109 - I would like to thank you all for the opportunity to testify in support of supported decision making, an act relative to authorizing supported decision making agreements for certain adults with disabilities, S 109. My name is Jonathan Gardner, I live in East Bridgewater Massachusetts. I'm a 20 year old decision maker, cancer survivor who happens to have autism. SHOW NON-ESSENTIAL DIALOGUE
Oh, really? And oh.
SPEAKER15 - 0, sorry. Does that count onto my time?
SPEAKER4 - Oh, okay. Just
GARDNER - I would like to thank you all for the opportunity to testify in support of supported decision making, an act relative to authorizing supported decision making for certain adults with disabilities, S 109. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER4 - Oh, just go.
GARDNER - My name is Jonathan Gardner, I live in East Bridgewater, I am a 20 year old decision maker and a cancer survivor who happens to have autism. I have different types of supports and supporters that help me live my best life. I use, supported decision making or SDMs. SDM is an alternative option, to help them make decisions. I'm the decision maker in my life. I have supported decision making, in my fight against cancer and natural health, and areas to help my life. When I was 16, my mother and I were trying to by the to, My mom had learned about SDM and we decided to try it. To me, SDM was a, tool and a choice that I had in my toolbox. I think exposure to, guardianship there are lots of other functions people can use. I started by choosing my supporters. I decided on different people who would help me with different,
My first SDM plan only included my mom, dad, and brother. But as I grew older, my plan has evolved and I've added many other supporters to my team for different areas of my life. Because SDM lets me keep my rights, I can change my own plan as my needs and life change over time. I even want to in control of my life not a guardian work it out for me. In 2021, I was diagnosed with1339 Ewing sarcoma, which is a rare form of cancer.1341 This was done with the height of COVID-191343 pandemic. I was already using1345 SDM in my life, so in, I would have support through this new life journey. We had to have given the hospital to have at least at least put me at my appointments, a hospital fit to be inclined to respect as the impasse. We haven't talked about it in a discount it should be left. And I said, so that you haven't left. Fighting cancer has been one of the hardest things of your life. I would not be the person I am today without SDM.
For example, when I was 6 months into chemo I had, extent of radiation, I was1378 home one day and my body and mind were1380 feeling horrible and helpless. I ended up in my bedroom crying. I just really wanted to get better. I told my mum, I don't care what happens to me. I just wanted, to die. My mom had to take time and process all this herself, but when she came back, she came back, she came back, not as soon as me, but as I said, I'm trying to. He said to me, Jonathan, I do not know what the answer to this all is, but if you put the faith in me as your support person, I'm going to try my hardest to help you figure this out. From there, I get my mom the okay to contact the medical team and together they all came out with a different plan for me to think about. After thinking about it, I was able to talk to support, the plan to get my questions answered then I need to move forward with it. The plan will truly save my life too. I'll go ahead and get the mental health at the same time, thanks to SDM. SDM truly makes me feel involved, and it provides me the choices about, and how.
Because SDM was able to let my body, with the help of my supporters, I did not have any choices. When it came to, at least I was able to say to a doctor rolled on each other, have been life and death to me. I would have lost my choice. If I was not able to get my support of, my cancer treatments I would just be a shell of myself if even survived. I'm the type of something who needs to have full trust in the people that are in my life. If someone else take those authority about those people for me, I would not be able to keep going and be able to give1462 testimony here today. I need to make choices for my own life. If I, I would have been severely damaged and not the person I am today. SDM offers many opportunities in my life. I firmly believe that SDM gives people a choice for freedom and most potentially most of them. Anyone should have the right to choose the way they want to live their lives. So they can live their best lives. Thank you.
NANCY GARDNER - CONCERNED CITIZEN - SB 109 - I would like to thank you all for the opportunity to testify in support a supported decision making or SDM. My name is Nancy Gardner. I live in East Bridgewater. As you just heard from Jonathan, I am not just his mom, but I am privileged to be one of his support people. When Jonathan started cancer treatment, no one at the hospital seemed to know about SDM. I explained that I was not just a parent, I was a support person. Both my husband and I were support people. Therefore, Jonathan needed us both with him to go for treatment. There was a lot of pushback at the beginning. Jonathan's medical team learned a lot from us and along with their guidance, when Jonathan wanted to stop his treatment, I was able to support him by gathering and breaking down the information and choices he needed to continue treatment and save his life.
As Jonathan's mom and support person, I can tell you that my greatest worry has always been what will happen when my husband and I are no longer here. SDM has created a sense of security and weight off our soldiers, just knowing that Jonathan's voice will be validated by people he has chosen to support and care for him. His voices and choices matter. Because of SDM, Jonathan has evolved to be a more self confident individual in his choices. He is self advocating to a point that I could never had imagined. And I just want him to continue to guide us on this journey so he can live his best life. If SDM became law, more people would be willing to try it. Families would not have to fight like we had to and explain what SDM is to so many healthcare providers. It will just1565 be understood and accepted. Cancer was a hard enough to deal with. Families should1569 not have to fight to get the support they need for loved ones. Thank you.
Any questions? SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Any any questions? Sure.
KENNEDY - Thank you so much. And Jonathan, I apologize on behalf of the state for the technical issues and having to restart.1587 Thank you for your patience with us. And I would ask if you could, submit your testimony to us, written as well so we can have a record, make sure we catch every piece of it. And I just wanna clarify, which I think I heard, which, speaks to one of the importance of having, these agreements codified. Is that a part of this would also give access to information, or access into, you know, I know you gave the example of having your supporter in the medical appointment with you, during COVID. So that this would kind of1622 create that access to information as opposed to release of information with every agency at each time you're looking for it, is that correct?
N GARDNER - Yes. And so, like, when we were at the hospital, especially the first time we went in, it was a big hoopla of pushing that forward. But after we met with who we met with and how to get things, you know, kind of settled. The great thing was is that, I'll give a plug out at Mass General Hospital for just letting us do all these things, they flagged Jonathan's file. So every morning when we walked in at the height of COVID, they had our stickers ready to go, all the support people stickers, all the patient stickers, and we just went. Also, again, it was a whole another thing. You go into the chemo unit and, you know, only the patient was allowed, but we were able to push through those barriers. And I feel like I am a strong advocate that had a lawyer on speed dial. I was privileged and the lawyer will be testifying. So I was privileged to have that, a lot of people are not. And I just feel like when your child has cancer, or a terminal illness, or anything no parent needs to do that. We were scared ourselves and it was just a wonderful thing to see the hospital take this into full support.
J GARDNER - Yeah. I think being able to take a leap of faith and trust with all the stuff that I've gotten like HIPPA and all that stuff, it was truly one of the most painful things that I still, medical against that assumption. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER2 - Thank you so much. It's life. It really did.
SPEAKER4 - Do you
SPEAKER1 - have any other questions? Well, thank you for sharing your personal story. Oh. Thank you. Sorry.
SPEAKER14 - Yeah. Thank you, Mister Stewart. I know the virtual in person kind of his gets gets difficult.
LEBOEUF - But so first of all, Jonathan and Nancy, thank you for your testimony. I'm glad to see that, you know, you're here with us today. I guess, for Nancy, if maybe you could briefly describe for you as a decision maker, what was the support that you received during, you know, the whole ordeal to kind of equip you to be able to help with those decisions. And, you know, when you initially entered into the agreement with your family, you know, what was kind of the, I guess, the onboarding or the agreements that were made to kind of set the if that makes sense?
N GARDNER - So when we first decide to do supported decision making, we had gone to the school at a team meeting when Jonathan was 16 and I had asked for the guardianship options not knowing much of anything. And we were told Jonathan is on medication, and we were told that full guardianship was the way to go because what would we do if Jonathan didn't wanna take his medicine anymore? And my response was, I don't know, have you talked to Jonathan lately? Jonathan will tell you what is going on. What am I gonna do? He's bigger than I am. I don't know. What am I gonna do? And it just didn't seem right. Jonathan and I have a wonderful relationship, a trusting relationship, and I thought to myself there's got to be more. So I investigated and you'll be hearing from one of the teachers that taught me all about supported decision making soon. And I went to a workshop and I was like, woah. And then I brought my husband in for that workshop and he was like, woah, and then we brought Jonathan in, and he was like, let's do it.
And his team, Jonathan, has a lot of trust issues, he was very, very small at first. As Jonathan grew and evolved, his trust grew and evolved with other individuals, and he asked them to be supporters in different ways. He has someone that he goes to for finances, someone that he goes to for his mental health, someone that he goes to for friendship, and he even has a wingman. So, you know, these things have evolved. People have also stepped down from his supported decision making team that haven't been able to be as involved as they would have liked to, and that's okay. People have come and gone. And, and as he moves forward, I'm sure that's gonna continue. But knowing that he can make those decisions on who he wants is, I can't even tell you the peace it brings to my husband and I's heart. Because that is every night you lie down, and that's what the thoughts are on your pillow, what's gonna happen to my kids when we're not here.
My other child is 23, he lives on his own already, he's very independent. You know, he can do what he needs to do. Jonathan needs a little bit of support, and he knows what supports he needs, and he knows how to get them and who to ask for them. And so this is just very important to get this bill1930 passed for us because, like he told you, it saved his life.1934 If that moment when he said to me, I wanna die, no one should ever, ever, ever hear that from their child, ever. And I didn't know what I was gonna do but I did know that his medical team had already knew we were practicing this. It was 6 months into a very, we were in the hospital 5 days out of the week. We were there every day, they knew us.
J GARDNER - They used to call us the Jonathan and the mom team.
N GARDNER - Yep, and they did. And they knew, and they said, you know, we're not just Jonathan came on the emergency Zoom for 2 seconds and said, just tell my mother because I want no part of this, she'll break it down for me. And the power that he kind of gave me to take in that information, I wasn't gonna be like, okay, this is your only choice, Jonathan, you have to do it. Because we would not have such a lovely relationship still. SHOW NON-ESSENTIAL DIALOGUE
No. Go right ahead.
J GARDNER - Like, you see how we are, like, we all, like, got a jokey, we kind of have a decent rapport at least. But that exists because here's the thing, I went through it, long story short, I have a lot of trust issues to a lot of stuff that happened to my childhood. Not due to her or anything like that due to outside causes. But this relationship you see right here, this, like, that wouldn't exist because, well, I wouldn't trust her anymore, because if she, like, forced me in, like, strapped me in and forced the chemo, then the radiation on top of that, that would have basically ruined any type of trust I would have had. I could not be, supported decision making does. I say it all the time, but it is true. Supported decision making truly did save life, not only by mental health, but my physical health as well. But also being able to take care of, and I can never be more grateful for supported decision making. SHOW NON-ESSENTIAL DIALOGUE
Okay. Thank you.
SPEAKER16 - Great. Thank you.
SPEAKER1 - And next is Maggie Walter.
SPEAKER17 - Wanted to make sure because we had trouble. Not they had trouble getting the link, not that Mara didn't sign them up, Mar assigned everyone up, and we have, like, 2 lawyers and, a caregiver and 2 people that I support on virtual. And then I just because I heard your first before Anna stepped on that you only had 2 signed up virtually. There's many people signed up for way.
SPEAKER1 - No. No. Okay. On the prior bill.
SPEAKER17 - On the prior. Okay. I just wanted to make sure because I was like, oh, great.
MAGGIE WALTO - NONOTUCK RESOURCE ASSOCIATES - SB 109 - Thank you for giving me the opportunity to speak today. My name is Maggie Walto, and I'm a care manager for2120 Nonotuck Resource Associates. I'm very passionate about supported decision making because I believe strongly people with disabilities should be given a voice, a choice, and their rights. People with disabilities have the right to be included in their own decision making process to the fullest extent. I've been a part of the SDM pilot program through Nonotuck in the Center for Public Representation since the beginning stages of the pilot in October of 2013. In this pilot program, I was an SDM facilitator and an SDM supporter on some of the teams. I've watched many of the SDM members' lives change by introducing them to supported decision making.
After the start of the SDM pilot program, I observed many of the SDM members were quick to begin the decision making process in their lives. For instance, we had an SDM member who wanted his own apartment He leaned on his SDM team for some guidance on how to go about making this happen. The parents had a one on one talk with him, and without judgment, pointed out the financial costs of the decision as well as the pros to independent living. In the end, the SDM member made his own choice and wanted to pursue his first apartment. A few of the SDM members and families have been approached by the state about guardianship for their loved ones. And the families responded by reporting that2212 the supported decision making pilot program offered an alternative to guardianship, which they'd rather pursue.
One of the SDM supporters said, my sister has a processing disorder and she just needs time to answer, she also needs support in understanding decisions, and she tends to lean on family to help her. This doesn't mean she needs a guardian, she needs patience and time to process, and then she is quite capable of making her own decisions in her life. Naturally, most of us use a form of supported decision making. When we receive a medical diagnosis or need to make a big decision, we tend to lean on our closest support to help us. People with disabilities deserve the same opportunity. Currently, families have no other model but guardianship to choose from for their loved one.
In closing, people with disabilities deserve more than just the option of guardianship. I've witnessed supported decision making, and I've seen the transformative power of it. As a care manager, I've had the experience of having a court appointed guardian from Boston call me and not know a single thing about the person from the Berkshires they're guardianing for. They were asking me about the person's likes and dislikes, and if a certain day program would benefit this person. Supported decision making would resolve this issue and the SDM member would choose their closest support network to be a part of his or her team. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Okay. Your time's been up. Okay. Thank you. Samsung. Yes.
LIVINGSTONE - You said you2314 were part of a pilot program?
WALTO - Yes.
LIVINGSTONE - How large was the pilot program?
WALTO - So it was statewide and the agency, like, had, it actually branched out, Anna can help me out with this. So, we started in the Berkshires and Western Mass, and we had nine people. And then when we had phase 2, we went and we branched out to 5 agencies and they had a host of many members and Anna can speak about, like, how many members were through each agency. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. You're welcome. Are there any other questions? Thank you. Thank you.
Next, Alana Russo.
ALANA RUSSO - MDDC - SB 109 - Good afternoon Senator Livingstone, I mean, Representative Livingstone and Senator Kennedy, And members of the committee. My name is Alana Russo and I am a young disabled woman in my 40s. I live on my own in Bedford Mass. I am a member of the Massachusetts Developmental Disabilities Council, an independent agency dedicated to empowering people with developmental disabilities and their families to enjoy full productive lives by promoting self advocacy, community, inclusion, and opportunity. Today, I am here to testify on behalf the MDDC to in support of Senate Bill 109, an act relative to authorizing supported decision making agreements for certain adults with disabilities. I was born with mild cerebral palsy a learning disability and hearing impairment in both ears. I also have a history of complex medical conditions and Crohn's disease.
In 2021, I underwent an involved surgery to lessen the stiffness in my legs. There were several options provided to me, and with the help of my support team, which would be my doctors and my parents, I chose to have a back open pump. While I was at Spalding Rehab for 2 weeks, I had to learn to deal with doctors, fellows on my own. My parents were my support system via speaker phone which helped me understand all the medical terms so I could make decisions about my care. At one point, my Crohn's disease was in full blown because of all the trauma that my body was experiencing. My IV was causing me great pain, I wanted it to2547 stop. The nurse refused to listen to me and she told me that she wouldn't stop it without a doctor's order. And my dad had to intervene and persuade her to respect my decision. In the end, it was a medical error.
I'm asking you to pass Senate Bill 109 because having a supported decision making agreement will empower me and other people with disabilities to be seen as true decision makers2598 and have our decisions, wishes, and preferences respected.2604 The decision I have made to have the back open pump helped me a lot. Now I can move my legs more freely and I have greater mobility. I was better than before but it's never going to be perfect. I couldn't have made this decision without the help of my support team which would be my parents and my family. Many of us who have learning disabilities and other disabilities are very capable of making our own decisions about our everyday lives. But we might need just a little support in making big decisions. As you know, this bill has been passed in 16 other states and it's about time that Massachusetts does the same. Thank you for your time. SHOW NON-ESSENTIAL DIALOGUE
Thank you.
SPEAKER1 - Thank you. Thank you for your testimony. Thank you for sharing your personal story. Anyone have any questions? Well, thank you.
Next, it's Ryan Horrigan.
RYAN HORRIGAN - CONCERNED CITIZEN - SB 109 - Good morning. My name is Ryan Horrigan, and I am testifying before you to explain why I believe that supported decision making is so important to me. I am 28 years old and have a diagnosis of autism. My brain is wired differently. Sometimes I like to repeat thoughts especially if I'm nervous and anxious, This is soothing to me. I also like certain topics like names and cartoons. This gives me order and predictability in my world. I presently live In an apartment in Salem, and have assistance with budgeting, grocery shopping, and organizing myself. I work at Project Chilld in Beverly, and I am interning with Inclusion Sports. I live a fulfilled2763 life and hope to be in a healthy relationship with2767 a young woman one day. I am my own guardian, this is very important to me. I have worked hard most of my life to be as independent as is possible.
If this bill becomes law, I wanna build a supported decision making team with trusted supporters including my parents. We will then all have peace of mind for my future. As you can imagine, these are scary concerns for my family and me. I will need these type of supporters throughout my life. Naturally, I'm fearful of losing my parents but I would feel more at ease if I knew a team of trusted supporters would be available2822 to help me when necessary.2824 I wanna do well but I wanna be the one making decisions for myself. I respectfully request that you pass this legislation to help people like me navigate our world. Thank you for your consideration. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER17 - Yeah. Thank you.
SPEAKER5 - Thank thank you for your testimony.
SPEAKER1 - Welcome. Sharing your story. Does anyone have any questions? Thank you. Thank you.
Think you're here with us, sir?
Next is a panel. Sandy Kinney Heller in Craig Kinney.
SANDRA HELLER - MDDC - SB 109 - Good afternoon, everyone. Thank you for having us, Senator, Representatives, and the members of this committee. I'm here to support Senate Bill 109, an act relative to supported decision making agreements for certain adults with disabilities. Supported2912 decision making allows adults including those with disabilities and elders to maintain their rights, dignity, and independence by choosing one or more trusted supporters to provide assistance making decisions in their lives. I'm the proud parent of a 36 year old man who happened to be born with down syndrome, Kenny, he's here with me today. And I am also an appointed council member of the Mass Developmental Disabilities Council as well.
18 years ago when Craig turned 18, he and our family decided not to pursue formal guardianship. Craig's life is and has always been first presumed competent or least restrictive. He was never in a segregated classrooms, he always fully inclusive class in education throughout the years. We are firm believers that supported decision making allows adults, including those with disabilities, to maintain their rights, dignity, and independence by choosing one or more trusted supporters to provide assistance making decisions in their lives. Today, I'm happy to say that Craig's supported decision making agreement works. He has chosen 4 people in his life. He has family and caregivers and even supporters that are paid supporters is like supporting it. And thinks that every person should be given the opportunity to decide, including where he wants to live, what he wants to work. There's a little, I told him he has to work, a little bit. What he wants to do, who he wants to spend time with, and most importantly, receiving support needed to understand and communicate his own medical needs.
Craig's early childhood to today has given him every opportunity to be his decision maker. He's proud and respected for being a registered voter, deciding where he lives, with who he lives with, how he spends his own earned money from working, and who he wants to spend time, and, or most importantly, he's given the information and respect to understand his own medical needs. As a teenager, Craig endured a required life sustaining medical procedures. Not one day went by that everyone around him from the doctor to his family did not inform, explain, and help him through these difficult years. We all learn through our own life experiences, and we rely on others in our lives to help us with decision making, my son is no different.
Too many people are unnecessarily placed under restrictive guardianship when they would be able to make their own decision if they received an individualized assistance from people they trust, allowing them to retain their legal written dignity. Senate Bill 109 seeks to establish a legal framework for SDM in Mass as a potential alternative guardianship. This bill defines SDM and establishes roles for those involved. It allows people with disabilities and elders to enter an SDM agreement with supporters and people they trust. The bill creates protections against abuse and establishes training for people involved using SDM. All youth turning 18 and their families will also be made aware of the SDM options during IEP meetings. And most importantly, this bill would require courts to first consider SDM before establishing guardianship. This would save time and money in the probate courts by reducing the number of guardianship petitions for people who do not need3112 them.
Federal organizations have also recommended and endorsed using supported decision making as alternative guardianship. Including the American Bar Association, National Guardianship Associations, and The Arc of the United States, and the US Department of Education and US Department of Health and Human Services and the National Council On Disability, all do endorse these SDM Agreements. Supported decision making does not replace guardianship. It is an addition and a less restrictive option. And I ask today, the committee to please3147 vote yes on this important less restrictive bill to allow all people in Massachusetts the right to have the least3153 restrictive option. Thank you for this consideration.
He's a man of few words, and that is the beauty of this bill as well. He, Craig through his medical treatments he's had 2 tracheal reconstructions, he's had verbal apraxia, he has a hearing impairment. So with Craig, he understands everything, but I could tell you right now, he could not sit in this committee and give you this hearing verbally, and this is how it does work. And we've been practicing it before there was SDM. You know, he has a blog practicing supporter, and it changes through the years from what he wants and who he wants to be. And you know, even our drive up here, I was like, what did you do? Did you go with your father suddenly, because we're divorced? Yeah, that's his right. And 2 of the most important things in life, like, what happens next in your medical treatment? And how does he know and understand what will happen. And that's the key to it, is just giving him no supports. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Craig, would you like to add anything?
HELLER - So he's telling you a lot of different things. One is we have disagreement with who we choose politically. That is his right to choose. And what I have done, and what I will tell him all the time is he has other supporters. And I said, well, you'll have to talk to other people that support you and go and vote because I refuse to take him voting. So, it really does, and it has worked perfectly, and we laugh about it and make a joke, but, again, it's his right to choose who he wants to vote for. And we can, as a family, disagree, and it's good. And he gets that by having other supporters take him and support him to make those decisions that he chooses to make. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you.
SPEAKER7 - Thank you, Paul.
SPEAKER1 - Does anyone have any questions?
SPEAKER2 - I I do.
KENNEDY - I just wanna grab on something you mentioned. You mentioned that as part of your supporters team that you had paid supporters. Is that part of organizations you're working with, or3294 are you paying individuals for this role in3296 particular, or it's?
HELLER - It's from the agency that he received supports from. So they're paid to be caregivers in different aspects of his life, but he has chosen them a few of them to be his supporters on things such as going to medical appointments, such as relationships. You know, I've told him before, don't be talking to me about all the women stuff because I don't wanna hear it. So he has, one of his, a young man who's around the same age is a person he goes to to ask those questions. Well, what do you do? Oh, I like this woman. I'm like, I don't wanna hear it. So he has that in his life and he has that guidance. And as he said before and you've heard from other testimony, it's really just like you or I. You know, I don't make any decisions. I'm like, oh, I've had different medical things and cancer through my life, and I had to go home and talk to the family, including Craig. And say, this is what's happening, this is what I'm going through. I think it's also for Craig, it does help me to have the opportunity to research more information to give it to him so he understands because many things I don't understand. So it works in all aspects of all of our lives. And this worked out wonderfully, and I say we've been good. SHOW NON-ESSENTIAL DIALOGUE
Thank you. Thank you very much.
SPEAKER1 - Next. Mhmm. Next, we have R Faiman.
And then virtually, the first panel we have is a former state representative former state senator, Barbara Latoya, and Rick Glassman.
As a pan.
3398 SPEAKER203398 -3398 Rick3398 is gonna go first.
RICK GLASSMAN - DLC - SB 109 - Chair Kennedy, Chair Livingstone, members of the committee, they say that if the only tool you have is a hammer everything starts to look like a nail. I'm3412 Rick Glassman from the Disability Law Center and I'm here backing supported decision making mostly because we need more tools in our toolbox. Guardianship even limited guardianship can be a blunt instrument when it's applied to the wrong people. But we3427 wanna be very clear that no one wants to remove that tool from the toolbox. In our current system, it necessary for people, particularly with severe and profound disabilities, many others, but for the people that you've heard this afternoon, applying guardianship, even limited guardianship to their lives is something that will really limit them and limit their opportunities unnecessarily. And the problem is Guardianship is overused in part because we lack so many other tools in the toolbox. In about 20 other states, we now have supported decision making including just since the last time we were here before this committee, about 7 new states, Illinois, Colorado, New Hampshire, Maryland, New York, California, and even Alabama. And this legislation, like in those other states, provides a legal structure to provide a circle of supporters, as you've heard, services and supports around personal issues, finances, medical care.
It provides for written agreements that define rights and responsibilities. It instructs court3500 to consider SDM where appropriate, and it provides safeguards against abuse and mechanisms for training parties. We think that the legislation is well written and it provides what many people want and need, which is the same that what all of us want dignity and respect autonomy to make our own decisions wherever possible, to express our own preferences, and find our own way in the world, and make our own mistakes. But it also provides what we also all need, which is guidance from other people we can trust so we can make the best possible decisions. And so we think supported decision making should be supported. It's a mechanism, a tool to provide both autonomy and guidance. We've been asking for this for a long time, and we hope that you will report Senate 109 out favorably and join us in asking the rest of the Legislature to pass this bill finally in this session.
BARBARA L'ITALIEN - DLC - SB 109 - Thank you for taking my testimony today, Barbara Italian, currently the executive director at the Disability Law Center. I always3565 like to go after Rick because Rick is sort3567 of the deep dive guy, and I'm gonna give you a more emotional pitch. I come to you today really as the mother of a child on the autism spectrum, a young man. When he was about to turn 18, I checked in with my partner in crime on all things disability when I was in the Legislature, Representative Tom Sannicandro and said, you know, Tom, what do I do? I don't think my son needs full guardianship. I just, you know, he so needs to be a part of decisions that are made, it's central to his identity, it's central to his mental health, it's central to his autonomy.
And Tom said, then I think you have your decision because it's, at the time3611 was framed, as an all or nothing decision. So3613 we chose not to seek guardianship, it3615 didn't3615 feel right. I look at supported decision making as what Rick just mentioned, a tool in the toolbox for those folks who need some guidance, some assistance, but don't need to have all decisions made for them about where they live, where they work, where they play, how they vote. I'd like to pose it that this is a civil rights issue. We recognized a number of years ago that we needed to include folks in education, we needed to take them out of the basements, we needed to bring people back in the community. And this is a next logical step3650 of understanding and recognizing the totality of a human being and that they ought to have the right to participate in critical decisions on their behalf.
And so I would like to thank this committee for having reported this out favorably last session. The Senate did vote affirmatively on this last session. The clock ran out, of course, because it was late in the session. But this is an idea whose time has come, and I will just say again, Alabama just passed this. If Alabama can3679 do this, Massachusetts ought to be being proactive in taking this up. And the courts recognize and are welcoming that this needs to be done. It's possible you're gonna hear from others in this hearing that take a very different, very paternalistic, very, I need to control every aspect of my child's life approach. You know, the beauty of this is it's individuated to the person. And I would just say that there are so many folks for whom guardianship is a very heavy handed approach, and we need a mid ground and better way. Thank you so much. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER5 - Thank you.
SPEAKER1 - Are there any questions? Yes.
REP RAMOS - Good afternoon, nice to speak with you both. I wanna preface these questions is by saying I understand where these families are coming from, and I support the idea. But as someone practices who in the family and probate court and has represented victims of domestic violence for much of my career, I have a couple of questions, and so, just preface it with that. So what we're hearing testimony from is from families with children or adult children, often with autism or who have had some traumatic medical event. But I don't see anywhere in the text of either of these drafts, anything that limits who can enter into a supported decision making agreement. And so I'm wondering if that was left out on purpose, if you know if there's any thoughts on whether there should be some definition of who can enter into such an agreement?
GLASSMAN - I'll start Barbara and maybe can, jump in, and maybe, Anna Krieger could speak to this as well. I think the concern is that trying to use diagnostic categories, for example, overly medicalizes, determination that really should be individualized based on someone's own ability and circumstances. And it would be inevitably either over inclusive or under inclusive. And so I, you know, I think that we are confident that people who need, who can't participate in this process are, first of all, not going to want to be able to do it. But ultimately, if somebody3844 brings before the court the need3846 for a guardianship, the court will3848 realize that that person needs a deeper level of assistance that can be afforded through supported decision making. Barbara, do you wanna add anything to that?
L'ITALIEN - I don't think so. It doesn't impinge on the opportunity to apply for guardianship, it's just adding another option for those for whom guardianship is not necessarily the best choice.
RAMOS - And I guess what I was getting at is if there's someone who was maybe someone like myself, but I'm age 20, and I'm in a coercive control relationship, it's possible that that person I'm in a relationship may say, well, I know I'm not gonna get a guardianship for you. But if we enter into this supported decision making agreement, you'll then have access to all these records that you currently have personally protected. And so I know we can't solve every problem but I'm just wondering if there shouldn't be some parameters around who could be entering into these agreements. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER9 - I would think of that.
SPEAKER1 - No. 1 person I attend. There's there's 2 people test fine. Thank you.
Barbara Rick?
GLASSMAN - I would think in that instance the individual would be able to say, I simply don't want to supported decision making, right? So I don't want this person to be my supporter, whichever might apply. I'm not sure that this bill, if enacted, would leave an individual vulnerable to being part of a supported decision making process that they didn't wanna be part of, I can't see that in the language of the bill. Will certainly go back over it, but it doesn't strike me as being a potential concern based on the language of the bill.
RAMOS - Thank you. And I just had 1 other, follow-up question to that. It, sorry let me pull up the language here. It says that it can be revoked orally or in writing. Do you have any concerns that an oral conveyance of a revocation by a decision maker may not be believed by people helping in those decisions? Or let's say if it was an IEP meeting, right, and someone said, you know what, I wanna withdraw this and tells their parents if they're the supported decision making. And then they go into the IEP meeting and the parent says, no, I'm still here as a supporter, I wanna be involved. I mean, do we think it should be limited to in writing, or do you not have any concerns that then oral revocations would be, I guess, appreciated or honored?
GLASSMAN - I think in that instance, if both the individual and the parent is there and they haven't opted for shared decision making, which they could opt for under the IEP process, but if they're simply relying on a supported decision making agreement, the individual could express their own preference that they4038 no longer have this supporter, and I think that would have to be honored. And I think that's the best outcome because it really, if there's any question as to the person's intent, it can, you know, the school district, for example, can inquire of that person. And I think it would be clear enough and on the record that they didn't want that individual to be their supporter at that time. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Any other questions?
SPEAKER21 - No. Thank you.
SPEAKER5 - Well, thank you. Thank you for your testimony.
SPEAKER1 - Next, we have, Senator Lovely.
SPEAKER14 - Oh, sorry. Sorry. Sure. Livingston, could I ask a quick question of the last 2 panelists?
SPEAKER1 - Sure. Sorry, I missed you.
SPEAKER14 - Yeah. No. That's I no. I get it. I'm I'm in cyberland.
LEBOEUF - So I guess just to follow-up on what Rep Ramos had asked, is there a different legal, I guess, a different legal threshold for how someone, how the supporter network is determined versus how a guardianship is determined? Because the specific example that rep Ramos provided about a coercive control, I mean, that's an interesting scenario where, like, you know, someone in that position might not be able to actually express that they don't want that person in that network given the nature of the fact that someone could be financially abusive. Or if someone has a substance used to sort of that they could be, you know, using that addiction as that coercive tactic. So, I'm just from my4138 understanding of how the model would work, is there a different threshold for how those supporters, I guess, are vetted?
GLASSMAN - I'm not sure this is entirely responsive. There are provisions in the bill for porting of potential abuse and coercion, so that's already there. But I don't, I think the the vetting of the individuals, who would be supporters, is in tended to be in the control of the individual and not of the probate court as I understand it. I hope that answers your question.
LEBOEUF - Yeah. It it does. I think there might be some more questions that I might have later on. But I'd be happy talk more about that offline. But I appreciate your candor on this or your answers on this. Thank you SHOW NON-ESSENTIAL DIALOGUE
Mr. Chairman.
SPEAKER1 - No problem. Thank you. And, now, Senator Lovely.
SEN LOVELY - SB 109 - SB 110 - Thank you Mr. Chairman, Madam Chairwoman, for the opportunity to testify on the supported decision making bill. I will be brief. I believe that former Senator L'Italien and Mr. Glassman really did explain the bill very well. Guardianship is very different from supported decision making. In my prior Senate life, I'm an attorney, I have done guardianship. It is the complete removal of a person's civil rights where they have no control over any aspect of their life, it's appropriate in many settings. For example, I have 2 nephews, who are in their 30s, who are severely developmentally delayed, can make no decisions for themselves, are non verbal, they would not be able to function outside of their family unit. Guardianship is extremely appropriate for them. The guardianship that I did when I was practicing was for a gentleman who had a catastrophic stroke, an architect, and had no control over his financial and healthcare decisions, could not make those decisions. It was appropriate for guardianship, for him, for me to make those decisions on his behalf.
Supported decision making is a different it's a different tool. It is for individuals who can participate and make decisions on their own, but they need some help, they need some guidance. I understand the questions as to how do you vet who might be, you know, that person. That would be the same question for a guardian. How do you know that a guardian wouldn't also maybe take advantage of someone? So we would look to those laws too or look to that process, if you will. So again, supported decision making, we're just seeing a tremendous amount of support, again, for those individuals who want to have some say in their life on what they, you know, might be maybe they wanna buy, you know, they can drive and buy a car. Maybe they, you know, whatever the decision might be, that they have an ability to do that.
In a guardianship, you have to be fully vetted by physicians that you are not able to make any of those decisions, and therefore, so that all of those rights are turned over to someone else. So This, this bill did pass in the Senate last session, very proud that it did. I think that, you know, a lot of people do understand that there's a tremendous amount of support for it because it does give this alternative in the appropriate setting for the appropriate individual. And so I understand your questions, they're good questions. We have vetted this. We do believe that it should be passed in the Senate again. We do hope that it passes in the House, I believe the house bill is in Judiciary, Representative Garballey, who he and I have worked very hard on this bill. But happy to get some answers to those questions, it's a little deeper dive offline, to the committee. And thank you for the opportunity to testify on this bill. I have another bill which I4420 can wait on. But thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Everyone's testifying once if if you wanted to finish off with another bill.
SPEAKER22 - I appreciate that. Let me let me just pull that that bill up really quickly.
LOVELY - So this is on, Senate number 110, resolve establishing a special commission on the treatment of intellectually and developmentally disabled offenders in the CJ system. So I'm going to give you an example of what happened here and why I filed this bill. A constituent the age of 19 found himself in the CJ system and found himself in the Middleton Jail for about a year, intellect of a 10 year old. And, so was it appropriate for him to be in that setting in an adult criminal justice setting in the jail pre trial. He actually lacked capacity, so he couldn't even testify on his behalf, but there he was. And so we're looking to be able to establish a special commission just to take a look He's not the only individual that has ended up in the system. He had to be closely monitored in the jail, protected, from, you know, from his adult peers.
But again, because he had the intellect of a 10 year old, he just was not in the right setting for him. And again, we see this all the time. So this bill, again, would establish a commission to take a look at this for individuals who are under this, you know, under the developmental and intellectual disability system. That we take a look at what's the alternative here instead of putting them through the adult system where, you know, incarcerated when clearly he did not belong there, he was in great peril. So anyway, that's why we filed the bill. Hope for the committee's positive recommendation to, again, create a special commission. Let's take a look at it. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Are there any questions?
SPEAKER5 - Thank you for your testimony.
SPEAKER12 - Thank you.
SPEAKER1 - The next panel is also virtual. We have Sandy,
Derek, and Amanda Benoit.
SANDY DEARE-ROBINSON - CONCERNED CITIZEN - SB 109 - Hi. I'm Sandy. Thank you for your time and support of hearing about how effective supported decision making can be for people with disabilities in Massachusetts. In 2009, I was delighted to have the opportunity to meet a young woman named Amanda who arrived at my house on Thanksgiving eve. Amanda needed a place to stay, so I opened my home to her, our relationship blossomed. At this time, I was a single mother raising 2 beautiful children, Maliah, Craig, and God had a plan for Amanda's arrival to our family. She fit right in with4608 the family. As time went by, Amanda needed help finding out where she was going to live. Using her own SDM model at the time, Amanda reached out to her friend, Maggie, and had a discussion about her options.
Amanda was very happy with my family and our friends, and she's decided to stay. Being asked to be Amanda's care provider was truly the best decision I have ever made in my life. She is the core of our family. Our relationship blossomed so much that I asked her to be a bridesmaid in my wedding. In 2014 when Amanda was asked about the supported decision making, in my opinion, I thought of her future, and this will be the best model for Amanda. It will secure her rights and her choices. Amanda knows who's in her life and who she trusts, she is capable of making decisions. When Amanda met with Nonotuck and CPR about SDM, I was happy she chose to join the pilot because she made an awesome choice for her future and a decision to secure her skills. She has consulted with her SDM team on some major decisions such as banking, relationships, health conditions, and best of all living her dreams to travel.
In 2021, Amanda had some health scares which she leaned on members of her SDM team to help her understand. She needed to understand what the doctors were saying about blood clots and cervical myelopathy. Amanda was told the pros and cons with having a surgery or not having a surgery, and Amanda independently made her decision to move forward. After surgery, Amanda's mobility skills changed, and she had to make a decision about her employment status. Due to her mobility, she was unable to go back to her position. DDS mentioned to Amanda that there is an opening at a Baroco day program, and she could look at the program if she would like. She had a discussion on the big picture of going to program versus staying home. Amanda decided to move forward with going on a tour, and it was so emotional for her because she really loved working. She then leaned on her SDM team for support and Amanda made the decision to pursue Baroco. Supported decision making has allowed Amanda to keep her voice and make her own choices in life. I am in support of the bill up for SDM. Please move forward in implementing this bill to help the rights of people with disabilities in Massachusetts. Thank you for your time. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you.
AMANDA BENOIT - CONCERNED CITIZEN - My name is Amanda Benoit. I live in Pittsfield with my caregiver, Sandy, and her family. I have been in SDM program for 9 years. I am happy to hear review from my all my decisions I made with supported from SDM teams. On my SDM I have Sandy, my mom, and two friends, Maggie and Diane. When I need help with decisions, I'll look to Sandy for support and also to my SDM team. My SDM helps me with decisions with my health, money, quality, and, and with my boyfriend, Chloe. Over the last 2 years, Sandy and my SDM team have supported me with healthcare. Sandy spoke to me about my health decisions and helping me understand the pros and the cons. And this helped me make decisions. SDM is a key because I have a green belt in taekwondo. And I have traveled to many places with my friend Maggie. In the end, my voice matters. I fully supported the SDM bill and helping us to follow our greeting. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER12 - Thank you.
SPEAKER1 - Thank you.
SPEAKER2 - Thank you.
SPEAKER1 - Thank you for your testimony, and
SPEAKER5 - thank you for sharing each
SPEAKER1 - of your personal stories. Are there any questions?
Thank you again.
Next also, virtually, we're5008 gonna call it Jonathan Jenkins.
JONATHAN JENKINS - NONOTUCK RESOURCE ASSOCIATES - Hi, I'm Jonathan. I like supported decision making. I have my family and my close friend, helps me understand decisions, helps me, on my interest. On my SDM team, I have my mother, my father, my sister, Debbie, grandma, and my friend Maggie. I have been in Nonotuck for 14 years. When I need help with my decision I usually look to my mother and my father for support. However, I also speak to my other team members where they help as a team. My SDM team has come out at my job. I work at Grills Marketplace. My SDM team, get extra hours. I like to work and make some money. And I need help getting more hours, so I lean on my SDM team to help me with this, my friend at Grills helping me at work. I work with my new tech5103 coach. And I have worked for Grills for forcing5107 years. I love it there.
My SDM team help grow in my skills, and, such as making better health decisions. At doctor's intensive permits, in buying how they prove choices at Target. My SDM team is very important to me and I trust them. Since joining SDM pilot program, I have made, decisions in my life with my SDM team. I have saved money and my TV, and I have redone my room. I have traveled with my friends to many places such as California, Tennessee, Las Vegas, and Grand Canyon in Florida. I enjoy going on vacations because I get to see some of my very best friends like my friend, Ben5173 and his family in5175 Florida. And in closing, supported decision making is important to me because I feel I can make my own decision. I get help from my team to reach my goals. I am thankful for, CPR Nonotuck. My best friend, Maggie, and Troy, for the SDM pilot program, it has changed my life. I'm excited to, in SDM. Thank you. SHOW NON-ESSENTIAL DIALOGUE
So thank you. Thank you.
SPEAKER1 - Thank you. Good job. Are there any questions?
Well, thank you for sharing your perspective and start. The next person we're calling is, Pantinal Also virtual Marie, Tennessee, and Beth Collette.
MARIE HENNESSY - MASS - SB 109 - Good afternoon. My name is Marie Hennessy, I am a self advocate with a disability. I work at Mass Advocates Standing Strong as a peer trainer and serve as a co chair of the supported decision making task force. MASS is an organization that supports and is run by self advocates in Massachusetts. One of the first of many opportunities when I made a choice to advocate for myself happened during my junior year in high school. I was meeting with my guidance counselor and he said that I should continue taking business classes because I was not a strong candidate for college, and I should not consider college in my future. I spoke up for myself and told him that my plan is5293 to go to college and work in the human service field providing services to persons with disabilities. My guidance counselor then said, our meeting is over and we never met again. I did not give up, though, as you can see, I'm here today. I reached out to teachers at school who encouraged me to pursue college and follow my dreams, which I did.
When thinking about how important the passage of the SDM bill is, remember all the teens and adults with disabilities who we may know of, who are told by caregivers every day what to do, who need to ask before making any independent choices, and do not know that they can use their voices to make simple choices such as what to wear, what to do for fun, who to be friends with, where to work, how to get involved in their community, how to communicate with doctors, case managers, service providers, and other professionals, and the list goes on and on. Take a moment and think about this question, what would your life be like if you had no choices? In conclusion, I ask again that everybody pass this supported decision making bill, Senate bill 109 which would provide persons with disabilities the ability to make their own life choices using SDM, supported decision making as an alternative to guardianship so that they could lead happy, productive, and successful lives in of their own choosing. Just as many of us have been able to do some of who are speaking here today. Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - The other member of the panel wanna testify? Beth Collette.
SPEAKER2 - Hello?
SPEAKER5 - Good.
SPEAKER25 - Hello.
BETH KOLLETT - MASS - SB 109 - Good afternoon, my name is Beth Kollett, I am totally blind. When I went away to work at School For The Blind from 1998 to 2004, they strongly recommended guardianship to all their Massachusetts students. I did not want this. I wanted to5481 make my own decisions. I got involved with Mass Advocates Standing Strong in 2006. I have held many positions with the Mass Advocates Standing Strong central region. My time with Mass Advocate Standing Strong led me to the supported decision making process. I needed this in my life, it would give me freedom to make my own decisions. I encourage people to stand up for their rights and empower themselves by using supported decision making to make their own choices and not be told what to do. So on August 24th, 2022 with the hard work of my dedicated peer guide, supported team from Mass Advocates Standing Strong, I was the first Massachusetts resident to have my supported decision making agreement with my mother as my supporter notarized. Please make supported decision making a law so that other self advocates and people with disabilities are able to choose SDM, supported decision making as an alternative to guardianship as 12 states in the United States of America already have. Please pass this supported decision making bill, Senate 109. Thank you for hearing my story. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you, and thank you for sharing your story. From. Are are there any any questions?
SPEAKER5 - Thank you.
SPEAKER1 - Welcome. The next panel is virtual morgan wick Whitlock in Michael Kendrick.
MORGAN WHITLACH - CPR - SB 109 - Thank you so much. My name is Morgan Whitlatch, and I'm the director of Supported Decision Making Initiatives at the Center for Public Representation. CPR is a legal advocacy center that's committed to protecting and advancing the rights of people with disabilities. We've been an active member of the Massachusetts Advocates for Supported Decision Making Coalition, and I'm here today5635 to express CPR's strong support of Senate Bill 109. My colleague, Michael Kendrick is gonna testify about CPR's experience with piloting supported decision making in Massachusetts and the benefits we've seen in practice can have in people's lives. I'm gonna be sharing with5650 you some of the national trends we've seen in the formal adoption and recognition of supported5654 decision making through our work as a legal technical assistance center for national disability rights organizations.
But prior to touching upon national trends, I was asked to clarify that Senate Bill 109 does require the termination of a supported decision making agreement to occur in writing and via written notice. That was the version of the bill the Senate passed during the last legislative session, and that was changed to require that to be terminated in writing. Through our national work, we've really seen the formal recognition of supported decision making spread across the United States for the last decade, and we urge you not to let Massachusetts be left behind. As showcased in my written testimony that's before you, at least 24 states and the District of Columbia have already passed statutes that formally5699 recognize supported decision making agreements5701 and or require courts5703 to consider supported decision making as a less restrictive option before appointing a guardian.
Rhode Island, New Hampshire, and Maine are among these states, and even Alabama, and most5712 recently Arizona joined them. There's no excuse for Massachusetts not to join5716 them as well. We've heard from partners in those implementing states and in those state statutes that they have resulted in people with disabilities improving their decision making skills and experiencing greater self esteem and better family relationships. What we've learned also indicates that the legislation before you would benefit probate courts by reducing the financial and administrative burden of having to address guardianship petitions for people who do not need them. For example as indicated in a 2021 news article cited in my written testimony, since Wisconsin supported decision making law was introduced in 2017, the annual number of guardianship requests in that state decreased by 20%.
Supported decision making has been recommended and endorsed by respected organizations and federal agencies, including the American Bar Association, the National Guardianship Association, and the National Council on Disabilities among many others. In addition, supported decision making was specifically included as a less restrictive alternative in the Uniform Law Commission's 2017 update Article 5 of the uniform probate court which was the basis of Massachusetts5784 guardianship law. Leaders in this field from around the country also5788 included some of the very reforms that Senate bill 109 would achieve in the recommendations they adopted at the 4th National Guardianship Summit in May of 2021. Thank you so much for your time. I'll turn it over to Michael.
MICHAEL KENDRICK - CPR - Yeah. My name is Michael Kendrick, I was the former director of supported decision making with the Center for Public Representation. And at an earlier point in my life I was the assistant commissioner for the Massachusetts Department of Community Services. So I've been on the inside and the outside, so to speak, in terms of advocating for change. Now, the imposition of legal guardianship onto an individual with a disability does not actually help improve a given person's practice of decision making. What it actually does is to completely transfer legally all decision making authority to a substitute decision maker, i.e. their legal guardian. And what this does5846 is it leaves the person concerned without5848 any authority, whatsoever, legally to make their own decisions. And this usually is a state where someone's in for the remainder of their life. So they are removed from all decision making sort of, you know, forever.
Now rather than to presume that the imposition of guardianship, is the best way to protect vulnerable persons, it's much better to begin with a solution that legally enables the potentially vulnerable person to maintain their personal right to make their own decisions, but with the added intentional safeguard of assisting the person by providing them with individually tailored personal support with their decisions. Not all decisions are needing that kind of support, but there's certainly many decisions that they do need support with. Now the widespread success with using this strategy has resulted in the passing of supported decision making legislation throughout the US as has just been mentioned, but also across many countries across the world. So it's not something that's sort of a homegrown in the US. This is an international trend of considerable depths and breadth.
And it's been not only for one particular kind of person with a disability, but many people with varying disabilities5940 have benefited from supported decision making. And it's not it meant, as other speakers have said, to entirely discontinue the use of legal guardianship, but rather just simply add an area of support that wasn't present, which is what we're now calling supported decision making so that people don't end up getting guardianship when they could have been supported and have their rights preserved. So, the clear advantage of having a statute in the state of Massachusetts that supports supported decision making, it will make that option possible for all citizens of Massachusetts. And in this sense it'll be a great victory for the human rights of people that have had their rights taken away from them because of the guardianship. SHOW NON-ESSENTIAL DIALOGUE
Thanks. This will then be much more limited. So I'll
SPEAKER1 - stop you.
LIVINGSTONE - I was wondering if you could explain why a statute is needed at all? I mean, for example, I still ask my parents for advice, I ask my siblings for advice in any decision I wanna make, that happens without a statutory code. Why do we need to codify this, the ability of people to involve others in making a decision with them?
WHITLACH - Think that's a very good question. I'll start off, Michael, if that's okay. I think what we've heard from in piloting supported decision making with people in Massachusetts is there's a real desire to have assurances of enforceability. And I 100% agree with, you know, I use supported decision making every day. I don't necessarily have that kind of agreement. Why would we need to have to have one for a person with a disability to use it? And it really comes down to making sure that the hospitals, that the banks, that other third parties are recognizing the person's ability to get the kind of support they need and that just because they have a disability that doesn't mean that they can't have that kind of support.
Within the law, there's also protections that are built in for those third parties, including If you reasonably rely upon an agreement, there's limits in liability. And that can be very helpful just as having a form for a power of attorney can be very helpful to get third parties to honor that kind of arrangement. So that would be my argument as a lawyer as to why it's helpful to create a legal kind of framework. It promotes a recognition that people can use these types of supports in their lives. And it in many ways, will help if there does need to be if there's questions about supporters, if it lays out the certain arrangements with the supporters, whose the person is receiving the support that they need and want And it just adds clarity. Michael, do you have anything you wanna add?
KENDRICK - Yes. I think unfortunately, people have not respected the voice and will and preferences of persons with disabilities. And, it's important that we have legislation that recognizes that they do have the authority and the need to make their own decisions. And any kind of practice that takes that away from them, obviously, that sets them at a lifelong disadvantage. So what we're trying to do is be extra cautious to protect people so that they can have their rights recognized and exercised. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. I think that's representative.
REP GIANNINO - Thank you. I think today and all the examples we've seen are, children, parents, the guardian, are we seeing any interest in the adult children that are caring for parents that may have a physical or a developmental disability where the the roles are kind of reversed depending on the adult child, the parent with a disability? I've never heard of this. So, are there any situations where you see the opposite situation?
WHITLACH - Yes, there are. So, I worked with families who are older adults who are in the position of needing to have decision making support because of the decline perhaps in their cognitive functioning. So there have been circumstances. I've worked with people who have psychiatric illnesses who don't have necessarily the same kind of support networks, they don't have family involved in their lives, and they are turning to neighbors and friends and other people that they support to make kinds of decisions. So, it's not limited to people who have family members in their lives or who are the children of people who are older than them.
GIANNINO - Because there's something to note that it would be sent to a much broader population of party concerns and people that, could be to let this correct questions about it. So thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you. Okay. Great. Yes.
SEN O'CONNOR - Just a quick question regarding the termination in writing. I guess this may be an obvious question, but what are some of the anticipated reasons why SDM would be terminated by by the first party?
WHITLACH - I think what we heard from Jonathan Gardner today about how his supported decision making arrangement has changed over time as his life has changed. Those supporters can come in and out of your life, you might grow your support network in such a way that you no longer rely on the same kind of supports you did when you were, say, 20 years old. You rely on a different form of support. So it's really designed to be a very flexible voluntary tool for the person. As their lives change their support networks can change, and that's why that was built into the form for flexibility, I would say. And that's very consistent with other supported decision making laws across the country.
O'CONNOR - So not necessarily punitive in nature?
WHITLACH - No, the arrangement itself has to be a voluntary arrangement, you know, and so I think it's not, I don't think it's designed to be punitive in that way. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER28 - Thank you.
SPEAKER1 - Any other questions?
SPEAKER4 - Thank you.
SPEAKER1 - Next, virtually is David Clark.
DAVID CLARKE - MHD - SB 109 - Good afternoon.6319 I'm David Clarke, director of nonprofit, Massachusetts Health Decisions. Since 1991, when MHD convened the statewide healthcare proxy task force, MHD has been the lead agency to implement and promote the proxy. MHD has conducted more than 250 education programs for the public and clinicians. MHD has also responded to hundreds of inquiries from professionals and the public. In 32 years here's some of what we've learned about decision making. Most people wanna make their own decisions and6355 almost everyone seeks help from others before deciding. Most people don't wanna give up their decision making rights no matter what their level of ability. Health and other professionals are reluctant to recognize agreements, requests for information, or the involvement of helpers unless recognized by statute.
Neither the healthcare proxy nor guardianships reflect the way most people make their decisions The proxy names another person to make decisions but is used mostly for end of life decisions. People are skeptical of documents like powers of attorney that require legal help. And many people simply don't have the skills, resources, physical mobility or confidence to explore their own options and need practical help to do so. The proposed SDM legislation would help people maintain the greatest possible level of personal autonomy. Unlike the proxy or powers of attorney, SDM agreements would allow persons with their chosen supporters to act on their own choices. The legislation recognizes that all people seek help when faced with difficult decisions. That helping relationship ought to be honored by others whether by a clinician, a bank officer, an apartment rental agent, an employer, or a lawyer.
The legislation would certainly help people with disabilities and challenges, and it would also help the many solo seniors who avoid seeking help if they think they could lose their independence simply by revealing that they want help to make decisions. Perhaps most importantly, this legislation is essential because it gives civil, criminal, and professional immunity to people who in good faith recognize and act in reliance on an SDM agreement made with help from a chosen supporter. These protections better ensure that a person's supported decisions will be recognized and honored. SDM was endorsed in 2006 by the UN Convention on the rights of persons with disabilities. 16 states have already enacted SDM laws as have Canada, Sweden, Australia, and Ireland. Massachusetts citizens, both members of the public and professionals, would be clear beneficiaries of this proposed legislation. Thank you for your consideration and for the opportunity to share them. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Thank you.
K. K.
SPEAKER5 - Well, thank you. Thanks. Appreciate you.
SPEAKER16 - Thank you.
SPEAKER1 - The next bill we have is s 110 to resolve establishing a special commission on the treatment of intellectually and developmentally disabled offenders in the criminal justice system in,
Go.
SPEAKER2 - You signed up day out, so you'll be called at the end of the year. All of you.
SPEAKER1 - Yeah. All the worst.
Then no 1 has signed up to testify for that, although I sent it to lovely testified earlier. Also Senate 126 in act relative to mandated reporters of disabled persons abuse, and no one's set up for that. Next I'm gonna go back through people who signed up to testify today, but when I called their name, they didn't answer to see if they're here. So virtually, 1st, John Ford?
John, they're saying you're muted. If you'd like to testify, When you unmute yourself, you can testify.
It next, we have Paul, also virtual, Paul Lynn Zikos. Sorry
SPEAKER29 - for that. Lynn Zikos.
SPEAKER1 - Lynn Zikos. Sorry about that.
SPEAKER29 - It's fine. Thank you.
PAUL LANZIKOS- DIGNITY ALLIANCE MASSACHUSETTS - SB 109- Good afternoon members of the committee. My name is Paul Lanzikos, I'm the coordinator of Dignity Alliance Massachusetts, a statewide advocacy organization seeking to transform the provision of all forms of long term service and support. And today we're appearing in support of, the bills regarding supported decision making. As a matter of background, I've been involved with aging and disability services for over 50 years. I did have the privilege of serving as the secretary of the Executive Office of Elder Affairs during the Dukakis Administration. Supported decision making avoids the intrusiveness and cost of guardianship when guardianship is not warranted. It maximizes the autonomy and self worth of the individual who needs assistance in decision making. It is consistent with the United Nations Declaration of Human Rights.
Dignity Alliance Massachusetts strongly endorses the proposed legislation regarding the supported decision making and fervently hopes the residents in the Commonwealth will be able to make necessary and important decisions in their lives with appropriate support and assistance respecting their right to self determination and honoring their dignity. Passage of this legislation will help ensure that. And if I could just make a further comment response to the question about, is supported decision making something that would be of advantage to older adults? In my experience the answer is definitely a yes. Particularly as we're seeing many more older, fortunately, well, people growing into the elder years, and families are getting extended geographically, and otherwise.
It helps clarify for everybody involved who is identified as supporters of an older person that way the person himself or herself can select the individuals who they want involved in various aspects of their lives in making various decisions that will help minimize internal family conflicts and also help clarify for outside entities whether it's healthcare, financial, otherwise, that these individuals have been identified as bona fide supporters and people who the individual has called upon to help them in their important decision making. This legislation's now been pending for a number of years. And as you've already heard from previous people who testified, many other states have gone ahead of us and passed this very important, enabling legislation. We hope that6803 this would occur here in Massachusetts in the very near future. Thank you. SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - Are there any questions?
SPEAKER5 - Thank you for your testimony.
SPEAKER29 - Thank you.
SPEAKER1 - I'm gonna try John Ford again.
John, if you on mute.
Oh, he left? Okay. And then the the last person to sign up previews today that I called before, is our fay Faiman. Okay. And then, person that signed up today David Wasell? Castle? So
DAVID KASSEL - COFAR - Thank you. My name is David Kassel I'm with COFAR, Massachusetts Coalition of Families and advocates. We're a statewide nonprofit organization that advocates for people with developmental disabilities and their guardians and families. So, we actually have a differing opinion on this bill. We do support supported decision making for potentially most people. I think, I've heard the testimony today and I respect the wishes of6888 people. Many of these people who testified seem to6890 be quite high functioning and our concern is for people who are not in that category. And so unfortunately this bill, and it has been pending for many years, we've called for certain types of safeguards for much of that time and we just haven't seen it introduced. There is, I think as one of your members alluded to, there is no standard as to when a person can make decisions that they can fully understand and appreciate. So we we think that standard is needed.
We also think there is a conflict of interest issue here, that needs to be addressed. Members of the supported decision making team can be providers who are employees of providers who work for those companies and can give advice on these teams to people, so we're concerned about that. We're also concerned, it was stated that this is totally voluntary, but at a certain point coercion can be an issue. It is mentioned in the bill as a reason for terminating the bill or making it invalid. There's no statement as to who would determine the validity or lack thereof. It was stated, I think, Senator Lovely stated, well, a lot of people stated, you know, you have to, the same types of decisions are made in applying for guardianship, as to whether a guardianship is appropriate. And we agree a guardianship is not appropriate for everybody. It's not appropriate for people who are high functioning in most cases.
Our concern is for people we're at the very lower levels of cognitive functioning. Many of these people are in places like the Wrentham Developmental Center and yet this bill7015 does not differentiate. But just in terms of the issue of who can, of applying for guardianship, it is very difficult to apply for guardianship. You have to make the case for it, you have to explain why it's not, a lesser form of limited guardianship is not appropriate. You don't have to do that with SDM. And in fact, SDM imposes an additional burden7043 on people who are7045 applying for guardianship. It says that they have to, in, in addition to making the case, they have to explain why SDM is not guardianship, so it's just another hoop. One final point. SHOW NON-ESSENTIAL DIALOGUE
Okay. Well,
SPEAKER1 - I'll yeah. Try to be respectful of everybody. But you are the last person of the day, so it's a little more different.
LIVINGSTONE - So, what protections would you wanna put in the bill?
KASSEL - So, we would like that conflict of interest issue would be good to be addressed. We would we'd like to see that addressed. It was even in the pilot study that came out.
LIVINGSTONE - Are there any other limits that you would like to put in the bill?
KASSEL - Yeah, well, a standard of, level of cognitive functioning in which this would make sense below which it wouldn't. We'd like to see the language not taken out of the probate code. I mean this proposes language in the probate code that puts that additional burden so that people wouldn't have to make an additional case for guardianship saying this is not, saying SDM is not appropriate. So that, you know, there's a, I can give you in a list. There's some other issues that I can tell you.
SHOW NON-ESSENTIAL DIALOGUE
SPEAKER1 - you would like to iterate your testimony, that'd be helpful. Okay. Are there any other questions?
Thanks for your testimony. Is there anyone here that would like to testify that hasn't testified yet today that didn't sign Or they did sign
SPEAKER5 - up and we didn't call
SPEAKER1 - you for some reason. I don't know. Okay. With that, to close the hearing.
Thank you.
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