October 16, 2023
Minutes
Minutes
Attendees via Zoom: Alexandria Twombly, Ann-Marie Mayberry, Brenda Smith, Bryan Gordon, Carol Snyder, Carrie Woodcock, Darla Chafin, David Cowing, Debbie Dionne, Helen Hemminger, Jamie Whitehouse, Janet DiBiase, Julianne Zaharis, Kathy Rickards, Kim Humphrey, Laura Cordes, Lily Lin, Maggie Hoffman, Margaret Cardoza, Mary Chris Semrow, Rachel Dyer, Robin Levesque, Shae, Shane Ashe, Shelley Zielinski, Shelly King, Staci Converse, Staci Lamontagne, Sue Wall, Vickey Merrill, Cullen Ryan, and a few people who didn’t identify themselves and/or left prior to the conclusion of the meeting.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Margaret Cardoza, Self-Advocate; Carrie Woodcock, Executive Director, Maine Parent Federation, www.mpf.org; Staci Converse, Managing Attorney, DD Advocacy, Disability Rights Maine, drme.org; and Rachel Dyer, Associate Director, Maine Developmental Disabilities Council, www.maineddc.org. Topic: Supported Decision-Making
Cullen: I am pleased to welcome Margaret Cardoza, Self-Advocate; Carrie Woodcock, Executive Director of the Maine Parent Federation; Staci Converse, Managing Attorney, DD Advocacy with Disability Rights Maine; and Rachel Dyer, Associate Director of the Maine Developmental Disabilities Council presenting on Supported Decision-Making (SDM). Over time there has been a movement to ensure that people are able to make decisions for themselves. This has been an evolution from when people were devoid of rights and choices altogether, to new ways for people to maximize say and control over their lives. Supported Decision-Making (SDM) is one important step in that evolution and continuum. Maine is on the cutting edge of this and many people in this room helped to make that happen. It’s all about balance and what people individually need. We’ll discuss the latest about SDM and what’s to come. Thank you all for being here!
Margaret Cardoza: I am a self-advocate. Many of you know my story: I was born with the nasty “R” word, institutionalized, etc. My peers and I recognized that we could not make decisions for ourselves. Guardians would be making decisions and sometimes for some of us; it was pretty frustrating. There are some aspects of life that require risks – falling in love, etc. Some scenarios were more difficult than others, but we had no power to make decisions. Everything was in the hands of guardians. One night in 2013, I watched the news and found out there was a choice.
Click here for the video played as part of the presentation.
Margaret: For years self-advocates desired more freedom, the ability to make our own choices, to be in control of our lives. Under guardianship, it felt as if we had no choices, and no say in our lives. Until Jenny Hatch's case became public and light was shone on this issue. With this, we discovered we actually did have choices and worked to see that we had the ability to make them. After watching this newscast, I contacted Disability Rights Maine (DRM). After much advocacy and legislative attempts, Maine revised its Probate Code acknowledging our ability to make choices with Supported Decision-Making (SDM). I’ll now pass the baton to Carrie.
Carrie Woodcock: Thank you. I’ll share some work that we’ve been doing at Maine Parent Federation (MPF).
Begin presentation (Click here for the presentation).
Carrie: We were asked by the MDDC to do some work on SDM, informing people of the change in the Probate Code with SDM. We have a Youth Advocate who incorporates a lot of work with SDM in his work. We offer three transition resource fairs, which we collaborate with schools on, and we have our Youth Advocate attend those and speak to SDM as well. MPF isn’t here to make decisions for parents, we’re here to provide information and resources so that families can have informed conversations.
We were hearing from families that when their youth or young adult was approaching the age of majority they were being encouraged (by doctors, educators, etc.) to petition for guardianship. They weren’t informed there were other options and that it’s not all or nothing. It can be a-la-carte and individualized just like all other services. There are many tools in the toolbox which can all work together. Someone can have guardianship for medical decisions and then SDM for other decisions etc. And just because there’s a guardianship arrangement doesn’t mean you can’t use SDM in your home and empower the individual to have a say in their lives.
I empower my 19-year-old a little differently than my 16-year-old, but my goals for them aren’t different – the only difference is how they get there. You can’t parent every child the same way; it just doesn’t work. It can be scary, but we work towards empowering as much independence as possible while guaranteeing safety. With SDM, a team of individuals surrounds the individual, including subject matter experts, and everyone contributes information and resources in a way in which the individual can understand, so the individual can make the final decision. And when the final decision is made you respect that. Additionally, when you are part of an SDM team, you need to acknowledge your implicit biases and excuse yourself from providing support in those matters. That’s where the team is so important – if someone has to excuse themselves there’s an entire team there still supporting the decision-making process.
Garrett came to our first SDM Pilot Program; he uses SDM with his mom. The video on our You Tube channel describes this and provides the perspective from their voices.
Staci Converse: Carrie didn’t say that MPF did such an amazing job pivoting how they went about this work. This got started in 2019 and it was just about to get up and running with workshops and training, and then suddenly we were in a pandemic. They did a beautiful job of pivoting this work online and have gotten a lot of national attention for it. They did a lot of great work.
Carrie: We’ve been working with MDDC and the Autism Society of Maine on Empower the Learner, which works hand in hand with SDM. This is a tool that’s meant to raise the expectations of providers around individuals. It’s a multimedia tool that’s presented as a book that’s played (or printed out) for providers. The tool is completed with the youth and young adults to provide an understanding of areas of strengths and use those areas to assist with challenges. And it’s in the individual’s voice. We’re targeting rolling this tool out in schools to empower the learner to self-advocate for their needs, and have the tool grow with them and help students lead their own IEPs and transition plans.
Staci Converse: DRM has done a lot of work with youth and transition and SDM. We’re working with the Biddeford School District on a pilot project around all this as well. Decision-making is a skill that people need to be working on from the time they’re very young.
Discussion:
-A parent stated that SDM ought to start early. She stated that talking about guardianship in a more nuanced way would be advantageous. She stated that she has never restricted her son’s friends or made decisions about things that her son is able to do. Nuance is important.
Carrie: When we do our SDM training, the first thing we say is that this is a very personal decision for families and we’re not there to tell them how to make the decision but to provide information and resources so they can make the decisions that best works for their family. I use Robyn as an example in each workshop, who has full guardianship of her son, but works with him in their household on decisions he can make with support. People are just surprised to hear the authority full guardianship provides – many families and guardians would never restrict who their child is friends with, but full guardianship does allow for that. We understand and respect the decisions of families who have opted for full guardianship. We do provide that nuance in our training.
Margaret: There are wonderful parents. There are some parents and guardians who are not so wonderful. This is all individualized. Prior to 2013, there were no choices – you either had guardianship or you didn’t. There is a spectrum of capabilities. I don’t want to portray guardians as “evil” or “bad”, but I can personally say that I had a very bad parent. And I had a very great parent. There are some parents out there who were limiting the freedoms of people who had the capacity to make decisions for themselves. We’re in this transition phase with all of this. If you haven’t seen the workshops that Carrie has been putting on, I would highly recommend them. There’s a way to balance respect for the individual and the guardian. My hope is that individuals who have the capacity to make their own decisions can do so, with sufficient support.
-Parents stated that this is a transition. Some felt how it was presented today came across as “if you are a guardian, you’re doing these things”. It ought to be presented as “if you are a guardian, you have the power to do these things”. That is an important distinction. It was stated that it feels uncomfortable that there isn’t an assumption that families who have guardianship struggled with that decision and use SDM with their children who don’t have the capacity for full SDM.
Carrie: I understand the individualized nature of this. As a parent, I understand I’ve probably made decisions for my daughter without her being involved. I understand the safety aspect too – it scares me! If I go down the SDM pathway with my daughter, which is our plan, I have to understand I’m not the captain of the ship and I have to work through that. There will likely be tools put in place as part of a safety net, and we’ll make those decisions with her. We ensure to repeat that if you’re going down the SDM pathway it’s not about convincing the individual what decision should be made, rather it’s supporting them and providing them with all the resources possible to make the decision on their own.
Staci: I feel I should say that guardians don’t have absolute power to restrict friends – they’d have to get that specifically from the court. But this is very nuanced. I come from the perspective of seeing a lot of abuse by guardians. That’s my perspective. I don’t believe that all guardians abuse guardianship. There are situations when empowering the voice of the individual actually protects them a lot. For instance, someone in a group home is empowered to report abuse that happens there.
Robyn Levesque (MPF): As a parent who has guardianship of my son, these workshops are very respectful; they share my story with my son, and never have I ever felt disrespected. What you’ve seen today is a small snippet of the training. We also provide one-on-one training.
-A parent stated that SDM is very important, it’s just a very complex and personal transition.
Carrie: It is. Most families who come to us have no idea about other options, apart from guardianship. If I hadn’t known about this, I likely would have defaulted to the recommendation of my daughter’s doctor which would have been full guardianship.
Margaret: I’m thrilled there is this choice now. Before 2013, there were no choices, no options. You either were under full guardianship or you weren’t. It has taken so many years to create a more inclusive and respectable process since deinstitutionalization. And here we go again with this transition. This is a transition, and any transition has bumps along the way. Transition is difficult, but I hope that there will be respect given to all involved. I would like to see everyone have teams around them helping to make decisions. Whether or not you use SDM or have a guardian is less important than being surrounded by a group of people supporting you and your self-direction and independence.
Carrie: Just like everything else it’s very individualized. IEPs, PCPs, etc., are supposed to be individualized. The same applies here. SDM is how people parent naturally; it’s extending that same type of parenting to everyone with different supports/tools. But it’s individualized based on strengths and challenges. It’s empowering youth and young adults to make their own decisions and feel self-determined. But families don’t know what they don’t know. I’m lucky to be a professional who has a lot of information at my fingertips in this area. Most families don’t have that. MPF provides families with that information so they can help their loved ones be as independent as possible – and that independence looks different for everyone.
Staci: We go in front of probate courts to terminate a lot of guardianships largely by agreement of all parties. It comes down to how we maximize peoples’ abilities to have more control in their lives. It’s this really nuanced thing. For some people, guardianship is 100% bad, but that’s not every case. There are many instances where individuals had great relationships with their families and had been supported all of their lives they were just under full guardianship for lack of another option. They had been using SDM the whole time in practice, the only difference is petitioning the court to terminate guardianship so they can continue doing exactly what they had been doing with more freedom and less restriction that comes with guardianship.
Carrie: I would welcome anyone to attend a training. I would also welcome anyone to reach out to me ([email protected]). Part of what we do is incorporate feedback to better meet the needs of families. I appreciate the feedback from today. I appreciate the opportunity to have this conversation with all of you and look forward to continuing this.
-It was asked how difficult it is to have a guardian removed who is not doing a good job.
Staci: It’s challenging. You think about the person subject to guardianship and having limited control and access to things in their life. You don’t have the power to sign releases if you’re under full guardianship. Finding the help is challenging. The Probate Court itself is challenging. It’s one of the very rare legal circumstances in which you come in at a very disadvantaged position, someone else has control over your money, someone else has control over access to your records, etc. It’s challenging but not insurmountable. It should be as easy as sending a letter to the court requesting to challenge the guardianship and be appointed an attorney. But it’s not easy. Even when the entire family wants to terminate a guardianship it can take months and months and months, and that’s in an uncontested hearing.
-It was asked in the case of a sibling believing his parents will go for guardianship of his brother, but the sibling feels that SDM would be better, what the sibling can do.
Staci: If the sibling has ID/DD they can reach out to DRM, and we can do an intake. If they’re concerned about it, they can support the individual by requesting the court appoint an attorney. Make sure that the individual knows they are entitled to an attorney, and the person or someone in their family can let the court know that they want an attorney. Every court is supposed to consider if the person seeking guardianship has tried least-restrictive alternatives, including SDM. Having an attorney represent the person can help them make that argument.
-A parent commended everyone for working on all of this with such delicacy and with the best interest of the individual at heart. This hasn’t been the case in other states. She stated that it’s hard. She stated that she’s experienced custodians who worried her at times, but as with everyone else, there are mixed bags of people. Families carry big blisters, so patience is important. Language comes in many forms, and what we want most is for people to feel like they’re part of this world – and many don’t. Including many parents.
-A parent and former educator stated that the emphasis was on decision-making. He stated that when the SDM material came out it was very helpful because it provided a structured approach to having conversations with families. He stated that the late teen years and the transition out of high school can be a tumultuous time for individuals and families. SDM due to ID/DD is often paired with a mental health challenge, and any kind of family dynamic that creates difficulties can be a toxic mix. It becomes complicated navigating through that in a clean way. This is a population that can easily be victimized. It can be a battle whether or not SDM is a good idea or not. The emphasis on nuance and complexity is a good one to keep in mind. There ought to be a mechanism where someone can contact a probate judge to have it considered by an objective body.
-A parent stated that it’s too bad that the legal process is so hard in general. It seems that many people might need guardianship at first but down the road may not. Having this re-evaluated in a simplistic way would be advantageous.
Staci: This is a great point and a great way to think about it. And it can be reevaluated, but the court system is hard. Guardians may not be around forever, so what does that future transition look like? Practicing SDM helps with that as well.
Cullen: Thank you very much for your time here today and for helping us better understand SDM and be part of the dialogue. I’m a parent and also a guardian. Several things have been universally said: the need for this to be individualized; that it’s a spectrum; that SDM should happen whether there’s guardianship or not. I’ll add one more thing to this – our system is very black and white regarding age. As someone who studied adolescence for my master’s degree, I can say the age at which someone becomes an adult has evolved. We applied for guardianship of my son in 2013, right at that initial time of transition. In the past week, my son passed this amazing milestone that I never envisioned he could. I handed him a credit card and he navigated across a large parking lot and busy grocery store and back to buy orange juice for his grandmother. Back in 2013, my son couldn’t put a shopping cart away right next to the car in a parking lot. My son has evolved in terms of his capabilities and confidence and his view of the world. It’s important to always be thinking about where people sit on this continuum all of the time – and acknowledge that it ebbs and flows. We’re working to get this right and I want to commend everyone on this very thoughtful, well-rounded discussion. Thank you all!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads - No update
From previous meeting and/or announcements in-between meetings: For up to date information on the work that is going on regarding our Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov)
-Lifespan Information Updates: Proposed HCBS Lifespan Waiver: Family/Guardian/Youth Stakeholder Info and Listening Session: Please join the Office of Aging and Disability Services (OADS) and Maine Parent Federation (MPF) as we receive questions and comments in a listening session. The session is oriented toward families and youth (14-22 years old) who are currently managing or anticipating a transition to adult services. We would like to hear about the challenges this group faces and also hear input to how the proposed Lifespan waiver could offer resources to improve this experience. This Zoom session will also allow youth and their families to learn more about the proposed waiver concept. We will include a brief high-level review of the Lifespan design and updates based on feedback from the Concept Paper comment period. Please use the link below to register for the Zoom session. Dates/Times: Tuesday, October 24, 2023, from 11:30 AM to 1:00PM Zoom Registration: https://mainestate.zoom.us/meeting/register/tZ0ud-2rqT4oGt1NdfO2nj5KoLeouCv1pFcp
-The Department is pleased to provide updated Lifespan information in response to the comments received. For updates to the proposed Lifespan program, please see:Response to Concept Paper Comments
Lifespan FAQs
Table comparing proposed Lifespan Community Resource Coordinator with existing Targeted Case Management
-Section 1915(c) Waiver Appendix K Updates
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs - No update
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No update
Disability Rights Maine (DRM) Update:
Staci Converse: There is a referendum Question #8 about guardianship. Question 8 is an amendment to Maine’s Constitution that asks voters, “Do you favor amending the Constitution of Maine to remove a provision prohibiting a person under guardianship for reasons of mental illness from voting for Governor, Senators and Representatives, which the United States District Court for the District of Maine found violates the United States Constitution and federal law?” In 2001, Disability Rights Maine sued on behalf of three individuals under guardianship who were prohibited from voting because they had labels of mental illness. DRM argued the provision in the Maine Constitution that prevented them from voting was discriminatory, as individuals under guardianship for reasons of mental illness were the only group of people under guardianship to be automatically disenfranchised. The court agreed and found this provision to be in violation of both the Equal Protection Clause of the United States Constitution and the Americans with Disabilities Act. And, while this provision was deemed unconstitutional 22 years ago, the language remains as part of the Constitution. This was found to be unconstitutional. This provision since that time has not been enforced. It’s extraneous language that continues to be part of Maine’s Constitution.
Question 8 isn’t providing more voting rights; it’s just fixing an error. A “Yes” vote simply fixes incorrect language in Maine’s Constitution. It is important to note that if Question 8 fails to pass, nothing will change. The voting rights for Mainers under guardianship for reasons of mental illness, will not be in jeopardy.
This is confusing so I wanted to let people know about this. This could become voter self-suppression if people see the referendum question (or it doesn’t pass) and think they can’t vote.
If you would like to contact Disability Rights Maine regarding Question 8, please contact Voting Access Advocate, Molly Thompson at [email protected].
Cullen: An Op-Ed educating the general public might be advantageous.
Staci: There was a Letter to the Editor in the Bangor Daily News clearing up misinformation about Question 8. We also have a Blog Post on our website.
Cullen: Thank you for being here, Staci!
LD 924 Task Force Update: No Update.
Federal & Housing Updates:
Cullen:
State Legislature Update –
Cullen: We’re in between sessions, so this is an excellent time to reach out to your legislators and help them understand the needs of people with ID/DD, so that they can make educated decisions. Telling your stories is the most effective form of advocacy, and we’re all better for it. Thank you for raising your voice!
There are a number of carry-over bills that will be considered in the Second Session of the 131st Legislature. Many of these have already had public hearings and as such will not receive additional public hearings. The list of bills submitted for consideration as emergency legislation in the Second Session has been posted on the Legislature’s website. As has the list of Department bills. In order to be considered in the Second Session, bills have to pass the Legislative Council.
From last month’s meeting: Laura Cordes – Maine Association for Community Service Providers (MACSP): Over the past few years, I’ve built a Google doc to support the MCHQS' interest in monitoring and engaging in bills of interest in the 131st Legislature. The doc contains an updated list of bills of interest, links on how to testify in person, by zoom, and/or how to submit testimony, as well as a list of Committee members (click here for more information). The Second Session is the “Short Session” and only emergency bills, Governor’s bills, and bills carried over from the previous session will be heard. All new bills must pass the Legislative Council in order to move forward.
Other Business:
The next meeting will be on Monday, November 13, 2023, 12-2pm, via Zoom*.
Featured Speaker: Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. Topic: Update on the transition liaison project and information about a new pilot to help inform lifespan supports for transition-age youth and their families.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2023 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Margaret Cardoza, Self-Advocate; Carrie Woodcock, Executive Director, Maine Parent Federation, www.mpf.org; Staci Converse, Managing Attorney, DD Advocacy, Disability Rights Maine, drme.org; and Rachel Dyer, Associate Director, Maine Developmental Disabilities Council, www.maineddc.org. Topic: Supported Decision-Making
Cullen: I am pleased to welcome Margaret Cardoza, Self-Advocate; Carrie Woodcock, Executive Director of the Maine Parent Federation; Staci Converse, Managing Attorney, DD Advocacy with Disability Rights Maine; and Rachel Dyer, Associate Director of the Maine Developmental Disabilities Council presenting on Supported Decision-Making (SDM). Over time there has been a movement to ensure that people are able to make decisions for themselves. This has been an evolution from when people were devoid of rights and choices altogether, to new ways for people to maximize say and control over their lives. Supported Decision-Making (SDM) is one important step in that evolution and continuum. Maine is on the cutting edge of this and many people in this room helped to make that happen. It’s all about balance and what people individually need. We’ll discuss the latest about SDM and what’s to come. Thank you all for being here!
Margaret Cardoza: I am a self-advocate. Many of you know my story: I was born with the nasty “R” word, institutionalized, etc. My peers and I recognized that we could not make decisions for ourselves. Guardians would be making decisions and sometimes for some of us; it was pretty frustrating. There are some aspects of life that require risks – falling in love, etc. Some scenarios were more difficult than others, but we had no power to make decisions. Everything was in the hands of guardians. One night in 2013, I watched the news and found out there was a choice.
Click here for the video played as part of the presentation.
Margaret: For years self-advocates desired more freedom, the ability to make our own choices, to be in control of our lives. Under guardianship, it felt as if we had no choices, and no say in our lives. Until Jenny Hatch's case became public and light was shone on this issue. With this, we discovered we actually did have choices and worked to see that we had the ability to make them. After watching this newscast, I contacted Disability Rights Maine (DRM). After much advocacy and legislative attempts, Maine revised its Probate Code acknowledging our ability to make choices with Supported Decision-Making (SDM). I’ll now pass the baton to Carrie.
Carrie Woodcock: Thank you. I’ll share some work that we’ve been doing at Maine Parent Federation (MPF).
Begin presentation (Click here for the presentation).
Carrie: We were asked by the MDDC to do some work on SDM, informing people of the change in the Probate Code with SDM. We have a Youth Advocate who incorporates a lot of work with SDM in his work. We offer three transition resource fairs, which we collaborate with schools on, and we have our Youth Advocate attend those and speak to SDM as well. MPF isn’t here to make decisions for parents, we’re here to provide information and resources so that families can have informed conversations.
We were hearing from families that when their youth or young adult was approaching the age of majority they were being encouraged (by doctors, educators, etc.) to petition for guardianship. They weren’t informed there were other options and that it’s not all or nothing. It can be a-la-carte and individualized just like all other services. There are many tools in the toolbox which can all work together. Someone can have guardianship for medical decisions and then SDM for other decisions etc. And just because there’s a guardianship arrangement doesn’t mean you can’t use SDM in your home and empower the individual to have a say in their lives.
I empower my 19-year-old a little differently than my 16-year-old, but my goals for them aren’t different – the only difference is how they get there. You can’t parent every child the same way; it just doesn’t work. It can be scary, but we work towards empowering as much independence as possible while guaranteeing safety. With SDM, a team of individuals surrounds the individual, including subject matter experts, and everyone contributes information and resources in a way in which the individual can understand, so the individual can make the final decision. And when the final decision is made you respect that. Additionally, when you are part of an SDM team, you need to acknowledge your implicit biases and excuse yourself from providing support in those matters. That’s where the team is so important – if someone has to excuse themselves there’s an entire team there still supporting the decision-making process.
Garrett came to our first SDM Pilot Program; he uses SDM with his mom. The video on our You Tube channel describes this and provides the perspective from their voices.
Staci Converse: Carrie didn’t say that MPF did such an amazing job pivoting how they went about this work. This got started in 2019 and it was just about to get up and running with workshops and training, and then suddenly we were in a pandemic. They did a beautiful job of pivoting this work online and have gotten a lot of national attention for it. They did a lot of great work.
Carrie: We’ve been working with MDDC and the Autism Society of Maine on Empower the Learner, which works hand in hand with SDM. This is a tool that’s meant to raise the expectations of providers around individuals. It’s a multimedia tool that’s presented as a book that’s played (or printed out) for providers. The tool is completed with the youth and young adults to provide an understanding of areas of strengths and use those areas to assist with challenges. And it’s in the individual’s voice. We’re targeting rolling this tool out in schools to empower the learner to self-advocate for their needs, and have the tool grow with them and help students lead their own IEPs and transition plans.
Staci Converse: DRM has done a lot of work with youth and transition and SDM. We’re working with the Biddeford School District on a pilot project around all this as well. Decision-making is a skill that people need to be working on from the time they’re very young.
Discussion:
-A parent stated that SDM ought to start early. She stated that talking about guardianship in a more nuanced way would be advantageous. She stated that she has never restricted her son’s friends or made decisions about things that her son is able to do. Nuance is important.
Carrie: When we do our SDM training, the first thing we say is that this is a very personal decision for families and we’re not there to tell them how to make the decision but to provide information and resources so they can make the decisions that best works for their family. I use Robyn as an example in each workshop, who has full guardianship of her son, but works with him in their household on decisions he can make with support. People are just surprised to hear the authority full guardianship provides – many families and guardians would never restrict who their child is friends with, but full guardianship does allow for that. We understand and respect the decisions of families who have opted for full guardianship. We do provide that nuance in our training.
Margaret: There are wonderful parents. There are some parents and guardians who are not so wonderful. This is all individualized. Prior to 2013, there were no choices – you either had guardianship or you didn’t. There is a spectrum of capabilities. I don’t want to portray guardians as “evil” or “bad”, but I can personally say that I had a very bad parent. And I had a very great parent. There are some parents out there who were limiting the freedoms of people who had the capacity to make decisions for themselves. We’re in this transition phase with all of this. If you haven’t seen the workshops that Carrie has been putting on, I would highly recommend them. There’s a way to balance respect for the individual and the guardian. My hope is that individuals who have the capacity to make their own decisions can do so, with sufficient support.
-Parents stated that this is a transition. Some felt how it was presented today came across as “if you are a guardian, you’re doing these things”. It ought to be presented as “if you are a guardian, you have the power to do these things”. That is an important distinction. It was stated that it feels uncomfortable that there isn’t an assumption that families who have guardianship struggled with that decision and use SDM with their children who don’t have the capacity for full SDM.
Carrie: I understand the individualized nature of this. As a parent, I understand I’ve probably made decisions for my daughter without her being involved. I understand the safety aspect too – it scares me! If I go down the SDM pathway with my daughter, which is our plan, I have to understand I’m not the captain of the ship and I have to work through that. There will likely be tools put in place as part of a safety net, and we’ll make those decisions with her. We ensure to repeat that if you’re going down the SDM pathway it’s not about convincing the individual what decision should be made, rather it’s supporting them and providing them with all the resources possible to make the decision on their own.
Staci: I feel I should say that guardians don’t have absolute power to restrict friends – they’d have to get that specifically from the court. But this is very nuanced. I come from the perspective of seeing a lot of abuse by guardians. That’s my perspective. I don’t believe that all guardians abuse guardianship. There are situations when empowering the voice of the individual actually protects them a lot. For instance, someone in a group home is empowered to report abuse that happens there.
Robyn Levesque (MPF): As a parent who has guardianship of my son, these workshops are very respectful; they share my story with my son, and never have I ever felt disrespected. What you’ve seen today is a small snippet of the training. We also provide one-on-one training.
-A parent stated that SDM is very important, it’s just a very complex and personal transition.
Carrie: It is. Most families who come to us have no idea about other options, apart from guardianship. If I hadn’t known about this, I likely would have defaulted to the recommendation of my daughter’s doctor which would have been full guardianship.
Margaret: I’m thrilled there is this choice now. Before 2013, there were no choices, no options. You either were under full guardianship or you weren’t. It has taken so many years to create a more inclusive and respectable process since deinstitutionalization. And here we go again with this transition. This is a transition, and any transition has bumps along the way. Transition is difficult, but I hope that there will be respect given to all involved. I would like to see everyone have teams around them helping to make decisions. Whether or not you use SDM or have a guardian is less important than being surrounded by a group of people supporting you and your self-direction and independence.
Carrie: Just like everything else it’s very individualized. IEPs, PCPs, etc., are supposed to be individualized. The same applies here. SDM is how people parent naturally; it’s extending that same type of parenting to everyone with different supports/tools. But it’s individualized based on strengths and challenges. It’s empowering youth and young adults to make their own decisions and feel self-determined. But families don’t know what they don’t know. I’m lucky to be a professional who has a lot of information at my fingertips in this area. Most families don’t have that. MPF provides families with that information so they can help their loved ones be as independent as possible – and that independence looks different for everyone.
Staci: We go in front of probate courts to terminate a lot of guardianships largely by agreement of all parties. It comes down to how we maximize peoples’ abilities to have more control in their lives. It’s this really nuanced thing. For some people, guardianship is 100% bad, but that’s not every case. There are many instances where individuals had great relationships with their families and had been supported all of their lives they were just under full guardianship for lack of another option. They had been using SDM the whole time in practice, the only difference is petitioning the court to terminate guardianship so they can continue doing exactly what they had been doing with more freedom and less restriction that comes with guardianship.
Carrie: I would welcome anyone to attend a training. I would also welcome anyone to reach out to me ([email protected]). Part of what we do is incorporate feedback to better meet the needs of families. I appreciate the feedback from today. I appreciate the opportunity to have this conversation with all of you and look forward to continuing this.
-It was asked how difficult it is to have a guardian removed who is not doing a good job.
Staci: It’s challenging. You think about the person subject to guardianship and having limited control and access to things in their life. You don’t have the power to sign releases if you’re under full guardianship. Finding the help is challenging. The Probate Court itself is challenging. It’s one of the very rare legal circumstances in which you come in at a very disadvantaged position, someone else has control over your money, someone else has control over access to your records, etc. It’s challenging but not insurmountable. It should be as easy as sending a letter to the court requesting to challenge the guardianship and be appointed an attorney. But it’s not easy. Even when the entire family wants to terminate a guardianship it can take months and months and months, and that’s in an uncontested hearing.
-It was asked in the case of a sibling believing his parents will go for guardianship of his brother, but the sibling feels that SDM would be better, what the sibling can do.
Staci: If the sibling has ID/DD they can reach out to DRM, and we can do an intake. If they’re concerned about it, they can support the individual by requesting the court appoint an attorney. Make sure that the individual knows they are entitled to an attorney, and the person or someone in their family can let the court know that they want an attorney. Every court is supposed to consider if the person seeking guardianship has tried least-restrictive alternatives, including SDM. Having an attorney represent the person can help them make that argument.
-A parent commended everyone for working on all of this with such delicacy and with the best interest of the individual at heart. This hasn’t been the case in other states. She stated that it’s hard. She stated that she’s experienced custodians who worried her at times, but as with everyone else, there are mixed bags of people. Families carry big blisters, so patience is important. Language comes in many forms, and what we want most is for people to feel like they’re part of this world – and many don’t. Including many parents.
-A parent and former educator stated that the emphasis was on decision-making. He stated that when the SDM material came out it was very helpful because it provided a structured approach to having conversations with families. He stated that the late teen years and the transition out of high school can be a tumultuous time for individuals and families. SDM due to ID/DD is often paired with a mental health challenge, and any kind of family dynamic that creates difficulties can be a toxic mix. It becomes complicated navigating through that in a clean way. This is a population that can easily be victimized. It can be a battle whether or not SDM is a good idea or not. The emphasis on nuance and complexity is a good one to keep in mind. There ought to be a mechanism where someone can contact a probate judge to have it considered by an objective body.
-A parent stated that it’s too bad that the legal process is so hard in general. It seems that many people might need guardianship at first but down the road may not. Having this re-evaluated in a simplistic way would be advantageous.
Staci: This is a great point and a great way to think about it. And it can be reevaluated, but the court system is hard. Guardians may not be around forever, so what does that future transition look like? Practicing SDM helps with that as well.
Cullen: Thank you very much for your time here today and for helping us better understand SDM and be part of the dialogue. I’m a parent and also a guardian. Several things have been universally said: the need for this to be individualized; that it’s a spectrum; that SDM should happen whether there’s guardianship or not. I’ll add one more thing to this – our system is very black and white regarding age. As someone who studied adolescence for my master’s degree, I can say the age at which someone becomes an adult has evolved. We applied for guardianship of my son in 2013, right at that initial time of transition. In the past week, my son passed this amazing milestone that I never envisioned he could. I handed him a credit card and he navigated across a large parking lot and busy grocery store and back to buy orange juice for his grandmother. Back in 2013, my son couldn’t put a shopping cart away right next to the car in a parking lot. My son has evolved in terms of his capabilities and confidence and his view of the world. It’s important to always be thinking about where people sit on this continuum all of the time – and acknowledge that it ebbs and flows. We’re working to get this right and I want to commend everyone on this very thoughtful, well-rounded discussion. Thank you all!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads - No update
From previous meeting and/or announcements in-between meetings: For up to date information on the work that is going on regarding our Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov)
-Lifespan Information Updates: Proposed HCBS Lifespan Waiver: Family/Guardian/Youth Stakeholder Info and Listening Session: Please join the Office of Aging and Disability Services (OADS) and Maine Parent Federation (MPF) as we receive questions and comments in a listening session. The session is oriented toward families and youth (14-22 years old) who are currently managing or anticipating a transition to adult services. We would like to hear about the challenges this group faces and also hear input to how the proposed Lifespan waiver could offer resources to improve this experience. This Zoom session will also allow youth and their families to learn more about the proposed waiver concept. We will include a brief high-level review of the Lifespan design and updates based on feedback from the Concept Paper comment period. Please use the link below to register for the Zoom session. Dates/Times: Tuesday, October 24, 2023, from 11:30 AM to 1:00PM Zoom Registration: https://mainestate.zoom.us/meeting/register/tZ0ud-2rqT4oGt1NdfO2nj5KoLeouCv1pFcp
-The Department is pleased to provide updated Lifespan information in response to the comments received. For updates to the proposed Lifespan program, please see:Response to Concept Paper Comments
Lifespan FAQs
Table comparing proposed Lifespan Community Resource Coordinator with existing Targeted Case Management
-Section 1915(c) Waiver Appendix K Updates
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs - No update
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No update
Disability Rights Maine (DRM) Update:
Staci Converse: There is a referendum Question #8 about guardianship. Question 8 is an amendment to Maine’s Constitution that asks voters, “Do you favor amending the Constitution of Maine to remove a provision prohibiting a person under guardianship for reasons of mental illness from voting for Governor, Senators and Representatives, which the United States District Court for the District of Maine found violates the United States Constitution and federal law?” In 2001, Disability Rights Maine sued on behalf of three individuals under guardianship who were prohibited from voting because they had labels of mental illness. DRM argued the provision in the Maine Constitution that prevented them from voting was discriminatory, as individuals under guardianship for reasons of mental illness were the only group of people under guardianship to be automatically disenfranchised. The court agreed and found this provision to be in violation of both the Equal Protection Clause of the United States Constitution and the Americans with Disabilities Act. And, while this provision was deemed unconstitutional 22 years ago, the language remains as part of the Constitution. This was found to be unconstitutional. This provision since that time has not been enforced. It’s extraneous language that continues to be part of Maine’s Constitution.
Question 8 isn’t providing more voting rights; it’s just fixing an error. A “Yes” vote simply fixes incorrect language in Maine’s Constitution. It is important to note that if Question 8 fails to pass, nothing will change. The voting rights for Mainers under guardianship for reasons of mental illness, will not be in jeopardy.
This is confusing so I wanted to let people know about this. This could become voter self-suppression if people see the referendum question (or it doesn’t pass) and think they can’t vote.
If you would like to contact Disability Rights Maine regarding Question 8, please contact Voting Access Advocate, Molly Thompson at [email protected].
Cullen: An Op-Ed educating the general public might be advantageous.
Staci: There was a Letter to the Editor in the Bangor Daily News clearing up misinformation about Question 8. We also have a Blog Post on our website.
Cullen: Thank you for being here, Staci!
LD 924 Task Force Update: No Update.
Federal & Housing Updates:
Cullen:
- FY 24 Budget – Congress passed, and the President signed a 45-day Continuing resolution (CR), funding the government at FY 23 levels through 11/17, extending several expiring authorities, and including disaster relief funds, giving Congress more time to reach a final agreement on FY 24 spending bills.
- Senate FY 24 T HUD Appropriation Bill: On 7/20 the Senate T-HUD Appropriations Committee released its FY 24 spending bill. Overall, the bill provides $70.06 billion for HUD’s affordable housing, homelessness, and community development programs, an increase of $8.26 billion (or slightly more than 13%) over FY23-enacted levels. However, HUD needs to increase funding by approximately $13 billion just to maintain existing levels of assistance. Though, the Senate draft proposes $1.86 billion more in funding for HUD’s vital affordable housing and homelessness programs than the draft spending bill released by the U.S. House of Representatives on 7/11. The Senate THUD bill provides increased funding for key HUD programs, particularly those vital to getting or keeping people with the lowest incomes housed.
- House FY 24 Appropriation Bills (including HUD): On 7/27, the House Committee on Appropriations approved all 12 of its FY 24 appropriations bills, including the FY24 THUD spending bill. The bill proposes funding HUD at $68.2 billion, a $6.4 billion (or roughly 10%) increase to HUD programs over previously enacted levels. HUD needs an approximately $13 billion increase in funding over current levels just to maintain existing assistance. The spending bill proposes deep cuts to or even elimination of some HUD programs but appears to adequately fund most rental assistance programs.
- S 570, Medicaid Dental Benefit Act of 2023 – Introduced by Senator Cardin, this bill requires state Medicaid programs to cover dental and oral health services for adults. It also increases the Federal Medical Assistance Percentage (i.e., federal matching rate) for such services. The Centers for Medicare & Medicaid Services (CMS) must develop oral health quality and equity measures and conduct outreach relating to such coverage. Additionally, the Medicaid and Children's Health Insurance Program (CHIP) Payment and Access Commission must report on specified information relating to adult oral health care.
- SSI Savings Penalty Elimination Act – This bipartisan, bicameral bill will be reintroduced tomorrow, 9/12, by Senators Sherrod Brown (D-OH) and Bill Cassidy (R-LA). The bill will update SSI’s asset limits for the first time since the 1980s to ensure people with disabilities and seniors are able to prepare themselves for a financial emergency without putting the benefits that they rely on to live at risk.
- S 1557/ HR 3238 The Affordable Housing Credit Improvement Act – Senator Angus King cosponsored bipartisan legislation to create nearly two million new affordable homes across the country – including thousands in Maine. The Affordable Housing Credit Improvement Act would expand the Low-Income Housing Tax Credit (LIHTC) to provide more homes for low-income people, support small businesses trying to attract workers, and fill the state’s gap of more than 20,000 affordable housing units. It appears this bill has strong bipartisan support, increasing its likelihood for passage.
State Legislature Update –
Cullen: We’re in between sessions, so this is an excellent time to reach out to your legislators and help them understand the needs of people with ID/DD, so that they can make educated decisions. Telling your stories is the most effective form of advocacy, and we’re all better for it. Thank you for raising your voice!
There are a number of carry-over bills that will be considered in the Second Session of the 131st Legislature. Many of these have already had public hearings and as such will not receive additional public hearings. The list of bills submitted for consideration as emergency legislation in the Second Session has been posted on the Legislature’s website. As has the list of Department bills. In order to be considered in the Second Session, bills have to pass the Legislative Council.
From last month’s meeting: Laura Cordes – Maine Association for Community Service Providers (MACSP): Over the past few years, I’ve built a Google doc to support the MCHQS' interest in monitoring and engaging in bills of interest in the 131st Legislature. The doc contains an updated list of bills of interest, links on how to testify in person, by zoom, and/or how to submit testimony, as well as a list of Committee members (click here for more information). The Second Session is the “Short Session” and only emergency bills, Governor’s bills, and bills carried over from the previous session will be heard. All new bills must pass the Legislative Council in order to move forward.
Other Business:
- Community Connect Screening of Invisible: Personal Stories from the Front Lines of Disability Thursday 11/9 in Callahan Hall at the Lewiston Public Library.
- There was a request to have staff from Maine’s Congressional Delegation attend these meetings.
The next meeting will be on Monday, November 13, 2023, 12-2pm, via Zoom*.
Featured Speaker: Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. Topic: Update on the transition liaison project and information about a new pilot to help inform lifespan supports for transition-age youth and their families.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2023 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].