March 11, 2019
Minutes
Minutes
Present: Bob Carpenter, Mary Chris Semrow, Nell Brimmer, Margaret Cardoza, Betsy Mahoney, David Cowing, Debbie Dionne, Dennis Strout, John Regan, Erin Rowan, Mark Kemmerle, Rachel Dyer, Staci Converse, Diane Boas, Constance Mazelsky, Jenn Brooking, Lydia Dawson, Lisa Wesel, Scot MacDonald, Luc Nya, Jennifer Karod, Vickey Rand, and Cullen Ryan. Via Zoom – (Bangor): Andrew Cassidy, Dixie Redmond, Maggie Hoffman. (Brunswick): Teague Morris. (Winthrop): Cathy Dionne, Cheryl Stalilonis, Melissa Winchester, and Amy MacMillan. (Gardiner): Peggy. (Auburn): Ann Bentley. (Kennebunk): Bryan Gordon. Misc. sites: Helen Hemminger, Robin Levesque, Kathy Adams, Steve Richard, and Staci Lamontagne.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Featured Speaker: Margaret Cardoza, Self-Advocate, and Nell Brimmer, Managing Attorney for Developmental Services Advocacy, Disability Rights Maine. drme.org Topic: Supported Decision-Making: An alternative to guardianship.
Cullen: Today we’re going to hear about Supported Decision-Making (SDM), which is an alternative to guardianship. I want to say thank you to Margaret and Nell for working on the presentation, I’m looking forward to it. I want to acknowledge that a lot of work has gone into SDM as a concept and it represents a change. I also want to acknowledge that there is a tension here - between empowerment and keeping people safe. Thinking about the history of the system of care, historically we had institutionalization, where it was decided that people society considered more vulnerable had to be protected from the rest of us. With this came a real sense of disempowerment. With deinstitutionalization, after people moved out into communities, guardianship was put in place to ensure parents could help with safety by playing a role in decision-making. Now, SDM is being added to the continuum. There’s no one-size fits all approach that will serve an entire population. I’ve worked for 32 years with a population that experiences homelessness. One of the things we also did as a society when we deinstitutionalized people with serious and persistent mental illness (SPMI), was that we left them alone out in the community to make their own decisions. This resulted in a lot of people with SPMI on our streets, experiencing chronic homelessness. This is a failure of our system of care, and I certainly do not want to see this happen for people with ID/DD. There’s a certain segment of the population that is not in a good position to make all of their own decisions. Clearly, there is another segment that is fully able to do so. There is a balance between safety and being able to make decisions independently. I’m seeing people with ID/DD enter the world of homelessness – this population, when homeless, is at extreme risk for exploitation and being preyed upon as a result. We’ve started to see this happen a bit in Maine. Today is part of a conversation about how we can evolve a system to make sure we meet everyone’s needs, contemplate different models, empower people, and ensure we get it right. I want to thank our presenters, who have put in a lot of work trying to get it right.
Margaret Cardoza: I’m the only one in the room today who is here as a self-advocate; it’s kind of lonely. When I was born, it was the days of mothers being prescribed barbiturates and tranquilizers during their pregnancies, as doctors assumed it was fine. It turned out it was not. As a result, I suffered severe prenatal brain damage. At birth, my condition was considered so bad that the doctor requested euthanasia. This was pretty typical at the time. What wasn’t typical was that my parents said no. I’m here today because my parents advocated for me. In those days there weren’t supports and services available for people with disabilities and their families. The stress of accommodating someone with a disability is real. As a result, I was institutionalized and segregated. There weren’t laws protecting me. I struggled. I was fortunate that upon my parents’ divorce I was able to choose to live with my father, who instilled in me that the world was mine, encouraged me to reach and go for things, and stood by me. As a result of his support I pursued things I was told I would never be able to do. I worked with the early days of Speaking Up For Us (SUFU) during the self-advocacy movement. My friends, peers, and other self-advocates all gathered together to work on things we needed. We did phenomenal things together; however, the one problem we always had was guardianship. There were members in our group who had guardians who would not allow them to do anything, despite those people being quite capable. One person was placed, very inappropriately, in an aging facility. He wanted to participate in the world, but his parents, under the suggestion of his service providers, kept him in that aging facility. He died there. This is not an uncommon situation. Nothing was working until the Jenny Hatch case. On 8/2/2013, I saw Jenny Hatch’s story on the news and that’s when everything changed for me (click here for the video containing the Jenny Hatch news story).
Margaret: When I saw this news story it was an epiphany – there is a way, there is a solution to the issues we’ve encountered with guardianship. The very next morning I called the lawyer from the story, asking how we could establish this in Maine. He explained to me that in his research for the case he got a lot of his information from Australia. So that’s where I started looking! I got all excited thinking this is a chance to push the system forward in a positive direction for people with ID/DD. I contacted Disability Rights Maine (DRM) and I started getting trainings going on this topic. We went to go see a probate judge, and he explained to us that the hardest decision he is faced with in his job is taking away people’s civil rights. Between 1995 and 2011, adults under guardianship tripled, 90% of which were full guardianship cases. SDM needs more normalization, and it’s based on self-determination. The first question I ask parents when discussing SDM is if their children have friends – true friends, not paid supports, as this is the basis for SDM. I hear from parents’ perspectives; it’s a struggle, as there are anxieties and fears that without their protection and guidance their children could be abused or exploited. All I can say is it’s like riding a bike, you may fall off the bike, but you get back on. If you don’t give your children a chance how will they know that they have the capabilities to make their own decisions? I fell down a lot, but my father helped pick me back up. There was no “I told you so,” it was, “Well Margaret, what did you learn?” I could say I did it, I may have had some help, but I did it and that’s truly special and empowering. DRM has put together some videos, and the one I wanted to show this group is directed towards parents and family members (click here for the video).
Margaret: Guardianship can be one-size fits all, but SDM is not, and that’s an important distinction. Now, I’ll turn it over to Nell.
Nell Brimmer: I have a brief PowerPoint because I want to allow time for discussion, but I’ll cover some of the basic tenets of SDM.
(Click here for the Supported-Decision Making PowerPoint Presentation)
Nell: I want to turn everyone’s attention to the supported decision-making handbook. We created this and have hard copies because we wanted everyone to have something tangible that they could utilize as a workbook which guides them through SDM and includes a SDM Agreement.
Discussion:
-It was stated that SDM has been coming up in community meetings and having the handbook is very helpful.
-A parent asked if guardianships would be terminated due to this change in the Probate Code, because one had been terminated in Knox county.
Nell: No, guardianships will not be terminated due to this change in the Probate Code. That was one specific case in which the guardianship was terminated, and those guardians instead became supporters.
-There was discussion regarding the pros and cons of guardianship and SDM, and the instances in which, due to people’s abilities and capabilities that retaining guardianship makes sense. A parent stated that his daughter has the cognitive functioning of a one-year old, and thus cannot safely make her own decisions. It was stated that on the other end, there are instances in which people can make a lot of decisions on their own with a little support. There is a continuum of abilities and capabilities, and guardianship and SDM help to address this. SDM is a tool in the toolbox.
Robin Levesque – Maine Parent Federation (MPF): At Maine Parent Federation I work with youth, including helping them learn what their rights are. They have a great handle on what their needs are. I’m also a parent, and for my own son we made the decision to be guardians, as it’s the right decision for him and all of us. I think parents are very scared. This is an individual choice, their ought not to be shame involved. This is a decision that needs to be what’s best for the individual and family. It’s a scary process, but this presentation has been very educational.
Nell: It’s important to realize that parents applying for guardianship after 7/1/19 will have to try other less restrictive options prior to being granted guardianship. There are some mechanisms in the law, like annual reports and which least restrictive alternatives have been tried, that people petitioning for guardianship in the future will have to provide with the changes to the Probate Code.
-A parent stated that the blanket statements that guardianship is “stripping people of their civil rights”, referenced multiple times in the video, and that guardianship equates to “imprisonment”, are huge mischaracterizations of guardianship. She stated that she has guardianship, and when her daughter reached adulthood they let her make a lot of decisions, including bad ones. She stated that no parent wants to do this forever, as it’s very tiring, and they’re happy to have her daughter make her own decisions. A parent asked if there is any oversight with SDM. She stated that as a guardian she’s watched closely by the courts. She asked if they were to use the SDM model, and her daughter chose other people as her supporters, if there would be any oversight to ensure her chosen supporters are not exploiting her.
Nell: In talking with families, many families utilize SDM within guardianship – they’re not mutually exclusive. The majority of guardians who are family members are allowing dignity of risk and decision-making. What Margaret said is from the perspective of the individual, which is important to hear. For the monitoring piece, there isn’t formal monitoring, but there is the monitoring people have as part of a system, including the interactions with mandated reporters, people specifically tasked to watch out for abuse, neglect, or exploitation, such as case managers, service providers, residential providers, etc.
-The parent stated that through SDM, if her daughter chose a group of friends to be her supporters, there’s no requirement for them to interact with a case manager. And, the case manager has no authority to call supporters saying there’s something odd with her daughter’s Social Security, etc. If the supporters aren’t, through their professions, mandated reporters, being a supporter for SDM doesn’t make them one. There appears to be a real lack of oversight with this.
Nell: People in communities are stronger when they’re together. I’ve never helped someone created a SDM Agreement that didn’t involve parents, family, or caretakers. There has to be multiple checks and balances. In many instances, guardianship doesn’t protect against abuse, neglect, or exploitation. There could be some form of formal monitoring built in down the road. I hear the concern, and thank you for raising it, but I’m not sure it makes anyone any more vulnerable.
Lydia: When I was with DRM and working on the SDM project, I did a lot of research around how SDM affects people’s longevity. It doesn’t look at SDM in a vacuum, but the research has found that when people feel engaged in and in control of the direction of their lives there are huge positive effects on mental and physical health, as well as a substantially decreased likelihood of being sexually abused. There was a study which found that when people are very disengaged from the process of decision-making, they don’t learn how to say no. I think sometimes we get stuck in this SDM or guardianship debate, with nothing in between. Studies suggest that it’s about how engaged someone feels about making the decisions in their life. The studies show that when people are not engaged at all, bad things happen, and when they are engaged, very good things happen. SDM is really talking about how we move away from making all the decisions for people, to moving towards them feeling like they have the final say.
-A parent stated that she’s trying to picture her daughter in this situation. She asked if self-advocacy training is part of the SDM process. She stated that parents want to see their children have the skill set to fall off the bike and get back on, but they also need the skills to know how to get back on and avoid falling off again.
-It was stated that New York has funding that they use to train and pay a facilitator to work with the supporters helping people make decisions. It was asked if there are ways in which this could be funded in Maine, because it would be beneficial. A parent stated that parents generally want their children to make their own decisions.
Nell: I’m familiar with this practice in New York and think this would be great for Maine.
-A parent stated that in a year and a half her daughter will be a legal adult – she has no case management, and no planned transition from child to adult services. She stated that she is very concerned for her daughter’s future. She stated that in the hierarchy of needs there needs to be more focus at the base of the pyramid and not the top.
-It was asked how involved the Department of Education (DOE) is in getting this information to the folks in the high schools working on transition.
Nell: We did a huge training with Children’s Behavioral Health Services staff, and we continue to work with our education team. There is more information on the SDM website. We really want to position ourselves to be a helpful resource on this.
Cullen: Thank you both for presenting today. This generated a great discussion, which I’m sure is just the beginning of the dialogue. Thank you for all the work that went into this, well done!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Cullen: It appears that Amy MacMillan had to leave the meeting early, but it’s wonderful that she was able to attend! A new OADS Director is starting today and we look forward to him joining these meetings as well.
-It was stated that Paul Saucier is very sharp, humble, easy-going, and appears to be an excellent choice for Director of OADS.
Cullen: I had the opportunity to meet with DHHS Commissioner Lambrew, which was wonderful. There’s a lot on her plate right now, but she’s aware of all of the hot-button issues affecting people with ID/DD and the system of care. She appears to be an action-oriented person. There have been several positive changes and initiatives so far in this Administration as well, which is promising – such as Governor Mills pulling Maine out of its 1115 Medicaid Waiver strategy, which would have imposed restrictions on access to MaineCare, and instead using the 1115 Waiver to help people in need. I’m looking forward to having DHHS around the table moving forward!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Melissa Winchester (OCFS): At the direction of the Commissioner, every two weeks there will be updates on our website, which I believe is for all DHHS offices. This will allow for more frequent updates on what’s happening in the Department. We’re getting ready to begin working towards implementation of the report completed on the Children’s Behavioral Health system – be on the lookout for updates shortly.
Cullen: It’s great to have OCFS around the table, and I know Luc Nya was here earlier. Thank you for being here!
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT meetings are held in Portland on the first Friday of each month. The most recent meeting was on Friday, 3/1, in which Roberta Lucas from DOE presented on transition and required documentation for transition planning. April’s meeting, on 4/5, will feature Nell presenting on SDM.
Developmental Services Stakeholders Continuum of Care Update:
Cullen: In late 2009 and 2010 this Coalition initiated a project to redesign the system of care for people with ID/DD. The Coalition completed its White Paper in September 2011. In 2012, the Maine Legislature created the LD 1816 Developmental Services Workgroup, which was charged with studying ways to create a more efficient and effective service delivery system. This Legislatively appointed workgroup soon decided that the Coalition’s White Paper proposed a service delivery model that addressed nearly all of the concerns the Workgroup was tasked to solve. The Workgroup made modest language changes to the document while maintaining the content, and the Workgroup version was finalized after receiving input from the Coalition in January 2013. The final version, sent to the Legislature in February 2013, was the Developmental Services Lifelong Continuum of Care. The Developmental Services Stakeholders Continuum of Care subcommittee met prior to today’s Coalition meeting and made some minor revisions to this document in order to make it more current. My hope is that we can review the document with these changes and adopt it so we can work from and disseminate a revised, current version.
-The group reviewed the document and made minor revisions. There was a motion to accept this revised version of the Developmental Services Lifelong Continuum of Care. The motion was seconded and approved unanimously. (Click here for the revised Developmental Services Lifelong Continuum of Care Document, approved in the meeting.)
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): The Department decided to pull a few of the proposed rules that we have been following, including the proposed changes to Non-Emergency Transportation. The new Office of MaineCare Services Director noted they pulled the proposed rules due to advocacy efforts, such as that of this group. The Department also pulled rules that would limit what Targeted Case Managers could do. This news is very positive!
(We are awaiting additional updates on the State Legislature and updates on rule changes from Lydia and will included a link to them here once we receive them.)
Federal & Housing Update:
Cullen: The Office of MaineCare Services, with the help of a group of stakeholders across the state, submitted an Expression of Interest form for the Medicaid Innovation Accelerator Program (IAP). This would assist Maine in determining how to create more supportive housing, and it would help get hospitals and other interested parties to the table, to work together to see how we as a State could better serve high users of medical services. Maine appears to be sitting well with its application. More to follow, but this is quite exciting!
Additionally, last month Teague Morris informed the group that Senator King would be reintroducing his Senior Home Modification and Assistance Act from the previous Congress and would be expanding the bill to include people with disabilities. On 3/7, Senator King introduced the Senior and Disability Home Modification Assistance Initiative Act, with Senator Collins and a group of their colleagues co-sponsoring the bill. This bill would make it easier for seniors and individuals with disabilities to access federal home modification program funds, which could pay for home modifications and alterations such as grab bars and ramps, so that these populations can remain in their homes and in their communities. (Click here for the joint press release from Senators Collins and King). Senators King and Collins deserve applause for this effort! I want to thank Teague for listening to us and keeping us apprised of this effort. And, I want to thank Senator King for taking the lead, and Senator Collins for joining in this initiative. This is fantastic!
Teague Morris – Senator King’s Office: Thank you, we’re excited about it!
Disability Rights Maine (DRM) Update:
Stacy Converse: DRM continues to offer trainings on SDM, similar to the presentation from today, and how it and other less restrictive alternatives are incorporated into the new Probate Code (Click here for the dates and locations of the trainings). The Southern Maine Autism Conference, occurring this weekend, will also include SDM and incorporating it into the IEP process.
Handouts/Announcements:
The next meeting will be on April 8, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker and topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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. Participants introduced themselves. Minutes from the last meeting were accepted.
Featured Speaker: Margaret Cardoza, Self-Advocate, and Nell Brimmer, Managing Attorney for Developmental Services Advocacy, Disability Rights Maine. drme.org Topic: Supported Decision-Making: An alternative to guardianship.
Cullen: Today we’re going to hear about Supported Decision-Making (SDM), which is an alternative to guardianship. I want to say thank you to Margaret and Nell for working on the presentation, I’m looking forward to it. I want to acknowledge that a lot of work has gone into SDM as a concept and it represents a change. I also want to acknowledge that there is a tension here - between empowerment and keeping people safe. Thinking about the history of the system of care, historically we had institutionalization, where it was decided that people society considered more vulnerable had to be protected from the rest of us. With this came a real sense of disempowerment. With deinstitutionalization, after people moved out into communities, guardianship was put in place to ensure parents could help with safety by playing a role in decision-making. Now, SDM is being added to the continuum. There’s no one-size fits all approach that will serve an entire population. I’ve worked for 32 years with a population that experiences homelessness. One of the things we also did as a society when we deinstitutionalized people with serious and persistent mental illness (SPMI), was that we left them alone out in the community to make their own decisions. This resulted in a lot of people with SPMI on our streets, experiencing chronic homelessness. This is a failure of our system of care, and I certainly do not want to see this happen for people with ID/DD. There’s a certain segment of the population that is not in a good position to make all of their own decisions. Clearly, there is another segment that is fully able to do so. There is a balance between safety and being able to make decisions independently. I’m seeing people with ID/DD enter the world of homelessness – this population, when homeless, is at extreme risk for exploitation and being preyed upon as a result. We’ve started to see this happen a bit in Maine. Today is part of a conversation about how we can evolve a system to make sure we meet everyone’s needs, contemplate different models, empower people, and ensure we get it right. I want to thank our presenters, who have put in a lot of work trying to get it right.
Margaret Cardoza: I’m the only one in the room today who is here as a self-advocate; it’s kind of lonely. When I was born, it was the days of mothers being prescribed barbiturates and tranquilizers during their pregnancies, as doctors assumed it was fine. It turned out it was not. As a result, I suffered severe prenatal brain damage. At birth, my condition was considered so bad that the doctor requested euthanasia. This was pretty typical at the time. What wasn’t typical was that my parents said no. I’m here today because my parents advocated for me. In those days there weren’t supports and services available for people with disabilities and their families. The stress of accommodating someone with a disability is real. As a result, I was institutionalized and segregated. There weren’t laws protecting me. I struggled. I was fortunate that upon my parents’ divorce I was able to choose to live with my father, who instilled in me that the world was mine, encouraged me to reach and go for things, and stood by me. As a result of his support I pursued things I was told I would never be able to do. I worked with the early days of Speaking Up For Us (SUFU) during the self-advocacy movement. My friends, peers, and other self-advocates all gathered together to work on things we needed. We did phenomenal things together; however, the one problem we always had was guardianship. There were members in our group who had guardians who would not allow them to do anything, despite those people being quite capable. One person was placed, very inappropriately, in an aging facility. He wanted to participate in the world, but his parents, under the suggestion of his service providers, kept him in that aging facility. He died there. This is not an uncommon situation. Nothing was working until the Jenny Hatch case. On 8/2/2013, I saw Jenny Hatch’s story on the news and that’s when everything changed for me (click here for the video containing the Jenny Hatch news story).
Margaret: When I saw this news story it was an epiphany – there is a way, there is a solution to the issues we’ve encountered with guardianship. The very next morning I called the lawyer from the story, asking how we could establish this in Maine. He explained to me that in his research for the case he got a lot of his information from Australia. So that’s where I started looking! I got all excited thinking this is a chance to push the system forward in a positive direction for people with ID/DD. I contacted Disability Rights Maine (DRM) and I started getting trainings going on this topic. We went to go see a probate judge, and he explained to us that the hardest decision he is faced with in his job is taking away people’s civil rights. Between 1995 and 2011, adults under guardianship tripled, 90% of which were full guardianship cases. SDM needs more normalization, and it’s based on self-determination. The first question I ask parents when discussing SDM is if their children have friends – true friends, not paid supports, as this is the basis for SDM. I hear from parents’ perspectives; it’s a struggle, as there are anxieties and fears that without their protection and guidance their children could be abused or exploited. All I can say is it’s like riding a bike, you may fall off the bike, but you get back on. If you don’t give your children a chance how will they know that they have the capabilities to make their own decisions? I fell down a lot, but my father helped pick me back up. There was no “I told you so,” it was, “Well Margaret, what did you learn?” I could say I did it, I may have had some help, but I did it and that’s truly special and empowering. DRM has put together some videos, and the one I wanted to show this group is directed towards parents and family members (click here for the video).
Margaret: Guardianship can be one-size fits all, but SDM is not, and that’s an important distinction. Now, I’ll turn it over to Nell.
Nell Brimmer: I have a brief PowerPoint because I want to allow time for discussion, but I’ll cover some of the basic tenets of SDM.
(Click here for the Supported-Decision Making PowerPoint Presentation)
Nell: I want to turn everyone’s attention to the supported decision-making handbook. We created this and have hard copies because we wanted everyone to have something tangible that they could utilize as a workbook which guides them through SDM and includes a SDM Agreement.
Discussion:
-It was stated that SDM has been coming up in community meetings and having the handbook is very helpful.
-A parent asked if guardianships would be terminated due to this change in the Probate Code, because one had been terminated in Knox county.
Nell: No, guardianships will not be terminated due to this change in the Probate Code. That was one specific case in which the guardianship was terminated, and those guardians instead became supporters.
-There was discussion regarding the pros and cons of guardianship and SDM, and the instances in which, due to people’s abilities and capabilities that retaining guardianship makes sense. A parent stated that his daughter has the cognitive functioning of a one-year old, and thus cannot safely make her own decisions. It was stated that on the other end, there are instances in which people can make a lot of decisions on their own with a little support. There is a continuum of abilities and capabilities, and guardianship and SDM help to address this. SDM is a tool in the toolbox.
Robin Levesque – Maine Parent Federation (MPF): At Maine Parent Federation I work with youth, including helping them learn what their rights are. They have a great handle on what their needs are. I’m also a parent, and for my own son we made the decision to be guardians, as it’s the right decision for him and all of us. I think parents are very scared. This is an individual choice, their ought not to be shame involved. This is a decision that needs to be what’s best for the individual and family. It’s a scary process, but this presentation has been very educational.
Nell: It’s important to realize that parents applying for guardianship after 7/1/19 will have to try other less restrictive options prior to being granted guardianship. There are some mechanisms in the law, like annual reports and which least restrictive alternatives have been tried, that people petitioning for guardianship in the future will have to provide with the changes to the Probate Code.
-A parent stated that the blanket statements that guardianship is “stripping people of their civil rights”, referenced multiple times in the video, and that guardianship equates to “imprisonment”, are huge mischaracterizations of guardianship. She stated that she has guardianship, and when her daughter reached adulthood they let her make a lot of decisions, including bad ones. She stated that no parent wants to do this forever, as it’s very tiring, and they’re happy to have her daughter make her own decisions. A parent asked if there is any oversight with SDM. She stated that as a guardian she’s watched closely by the courts. She asked if they were to use the SDM model, and her daughter chose other people as her supporters, if there would be any oversight to ensure her chosen supporters are not exploiting her.
Nell: In talking with families, many families utilize SDM within guardianship – they’re not mutually exclusive. The majority of guardians who are family members are allowing dignity of risk and decision-making. What Margaret said is from the perspective of the individual, which is important to hear. For the monitoring piece, there isn’t formal monitoring, but there is the monitoring people have as part of a system, including the interactions with mandated reporters, people specifically tasked to watch out for abuse, neglect, or exploitation, such as case managers, service providers, residential providers, etc.
-The parent stated that through SDM, if her daughter chose a group of friends to be her supporters, there’s no requirement for them to interact with a case manager. And, the case manager has no authority to call supporters saying there’s something odd with her daughter’s Social Security, etc. If the supporters aren’t, through their professions, mandated reporters, being a supporter for SDM doesn’t make them one. There appears to be a real lack of oversight with this.
Nell: People in communities are stronger when they’re together. I’ve never helped someone created a SDM Agreement that didn’t involve parents, family, or caretakers. There has to be multiple checks and balances. In many instances, guardianship doesn’t protect against abuse, neglect, or exploitation. There could be some form of formal monitoring built in down the road. I hear the concern, and thank you for raising it, but I’m not sure it makes anyone any more vulnerable.
Lydia: When I was with DRM and working on the SDM project, I did a lot of research around how SDM affects people’s longevity. It doesn’t look at SDM in a vacuum, but the research has found that when people feel engaged in and in control of the direction of their lives there are huge positive effects on mental and physical health, as well as a substantially decreased likelihood of being sexually abused. There was a study which found that when people are very disengaged from the process of decision-making, they don’t learn how to say no. I think sometimes we get stuck in this SDM or guardianship debate, with nothing in between. Studies suggest that it’s about how engaged someone feels about making the decisions in their life. The studies show that when people are not engaged at all, bad things happen, and when they are engaged, very good things happen. SDM is really talking about how we move away from making all the decisions for people, to moving towards them feeling like they have the final say.
-A parent stated that she’s trying to picture her daughter in this situation. She asked if self-advocacy training is part of the SDM process. She stated that parents want to see their children have the skill set to fall off the bike and get back on, but they also need the skills to know how to get back on and avoid falling off again.
-It was stated that New York has funding that they use to train and pay a facilitator to work with the supporters helping people make decisions. It was asked if there are ways in which this could be funded in Maine, because it would be beneficial. A parent stated that parents generally want their children to make their own decisions.
Nell: I’m familiar with this practice in New York and think this would be great for Maine.
-A parent stated that in a year and a half her daughter will be a legal adult – she has no case management, and no planned transition from child to adult services. She stated that she is very concerned for her daughter’s future. She stated that in the hierarchy of needs there needs to be more focus at the base of the pyramid and not the top.
-It was asked how involved the Department of Education (DOE) is in getting this information to the folks in the high schools working on transition.
Nell: We did a huge training with Children’s Behavioral Health Services staff, and we continue to work with our education team. There is more information on the SDM website. We really want to position ourselves to be a helpful resource on this.
Cullen: Thank you both for presenting today. This generated a great discussion, which I’m sure is just the beginning of the dialogue. Thank you for all the work that went into this, well done!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Cullen: It appears that Amy MacMillan had to leave the meeting early, but it’s wonderful that she was able to attend! A new OADS Director is starting today and we look forward to him joining these meetings as well.
-It was stated that Paul Saucier is very sharp, humble, easy-going, and appears to be an excellent choice for Director of OADS.
Cullen: I had the opportunity to meet with DHHS Commissioner Lambrew, which was wonderful. There’s a lot on her plate right now, but she’s aware of all of the hot-button issues affecting people with ID/DD and the system of care. She appears to be an action-oriented person. There have been several positive changes and initiatives so far in this Administration as well, which is promising – such as Governor Mills pulling Maine out of its 1115 Medicaid Waiver strategy, which would have imposed restrictions on access to MaineCare, and instead using the 1115 Waiver to help people in need. I’m looking forward to having DHHS around the table moving forward!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Melissa Winchester (OCFS): At the direction of the Commissioner, every two weeks there will be updates on our website, which I believe is for all DHHS offices. This will allow for more frequent updates on what’s happening in the Department. We’re getting ready to begin working towards implementation of the report completed on the Children’s Behavioral Health system – be on the lookout for updates shortly.
Cullen: It’s great to have OCFS around the table, and I know Luc Nya was here earlier. Thank you for being here!
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT meetings are held in Portland on the first Friday of each month. The most recent meeting was on Friday, 3/1, in which Roberta Lucas from DOE presented on transition and required documentation for transition planning. April’s meeting, on 4/5, will feature Nell presenting on SDM.
Developmental Services Stakeholders Continuum of Care Update:
Cullen: In late 2009 and 2010 this Coalition initiated a project to redesign the system of care for people with ID/DD. The Coalition completed its White Paper in September 2011. In 2012, the Maine Legislature created the LD 1816 Developmental Services Workgroup, which was charged with studying ways to create a more efficient and effective service delivery system. This Legislatively appointed workgroup soon decided that the Coalition’s White Paper proposed a service delivery model that addressed nearly all of the concerns the Workgroup was tasked to solve. The Workgroup made modest language changes to the document while maintaining the content, and the Workgroup version was finalized after receiving input from the Coalition in January 2013. The final version, sent to the Legislature in February 2013, was the Developmental Services Lifelong Continuum of Care. The Developmental Services Stakeholders Continuum of Care subcommittee met prior to today’s Coalition meeting and made some minor revisions to this document in order to make it more current. My hope is that we can review the document with these changes and adopt it so we can work from and disseminate a revised, current version.
-The group reviewed the document and made minor revisions. There was a motion to accept this revised version of the Developmental Services Lifelong Continuum of Care. The motion was seconded and approved unanimously. (Click here for the revised Developmental Services Lifelong Continuum of Care Document, approved in the meeting.)
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): The Department decided to pull a few of the proposed rules that we have been following, including the proposed changes to Non-Emergency Transportation. The new Office of MaineCare Services Director noted they pulled the proposed rules due to advocacy efforts, such as that of this group. The Department also pulled rules that would limit what Targeted Case Managers could do. This news is very positive!
(We are awaiting additional updates on the State Legislature and updates on rule changes from Lydia and will included a link to them here once we receive them.)
Federal & Housing Update:
Cullen: The Office of MaineCare Services, with the help of a group of stakeholders across the state, submitted an Expression of Interest form for the Medicaid Innovation Accelerator Program (IAP). This would assist Maine in determining how to create more supportive housing, and it would help get hospitals and other interested parties to the table, to work together to see how we as a State could better serve high users of medical services. Maine appears to be sitting well with its application. More to follow, but this is quite exciting!
Additionally, last month Teague Morris informed the group that Senator King would be reintroducing his Senior Home Modification and Assistance Act from the previous Congress and would be expanding the bill to include people with disabilities. On 3/7, Senator King introduced the Senior and Disability Home Modification Assistance Initiative Act, with Senator Collins and a group of their colleagues co-sponsoring the bill. This bill would make it easier for seniors and individuals with disabilities to access federal home modification program funds, which could pay for home modifications and alterations such as grab bars and ramps, so that these populations can remain in their homes and in their communities. (Click here for the joint press release from Senators Collins and King). Senators King and Collins deserve applause for this effort! I want to thank Teague for listening to us and keeping us apprised of this effort. And, I want to thank Senator King for taking the lead, and Senator Collins for joining in this initiative. This is fantastic!
Teague Morris – Senator King’s Office: Thank you, we’re excited about it!
Disability Rights Maine (DRM) Update:
Stacy Converse: DRM continues to offer trainings on SDM, similar to the presentation from today, and how it and other less restrictive alternatives are incorporated into the new Probate Code (Click here for the dates and locations of the trainings). The Southern Maine Autism Conference, occurring this weekend, will also include SDM and incorporating it into the IEP process.
Handouts/Announcements:
- There are two free screenings of Extraordinary People - A New Documentary About Adults with Autism & Employment, one in Orono on 4/2, and one in Biddeford on 4/10. Click here for the flyers and more information.
- There is a special screening of Dumbo in Auburn on 4/6. Click here for the flyer and more information.
- There are screenings of Intelligent Lives, with Filmmaker Dan Habib, on 4/4 in Orono. Click here for more information.
The next meeting will be on April 8, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker and topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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].