September 9, 2024
Minutes
Minutes
Attendees via Zoom: Betsy Hopkins, Brenda Smith, Carol Snyder, Craig Patterson, Hanna Daigle, Jennifer Putnam, Julianne Zaharis, Kim Humphrey, Kristen Tully, Libby Stone-Sterling, Liz Burgess, Lorraine DeFreitas, Lucas Cuellar, LyAnn Grogan, Margaret Cardoza, Melissa Bliss, Molly Bogart, Peter Bucklin, Rachel Dyer, Richard Estabrook, Robin Levesque, Sara Fleurant, Shelley Zielinski, Shelly King, Stacy Lamontagne, Vickey Merrill, Cullen Ryan, 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. Cullen also acknowledged the unfortunate recent passing of Laurie Kimball. This is a tragic loss, she was a fierce advocate, a warrior, and she will be sorely missed.
Cullen: Before we get to our featured speakers, Betsy wanted to address the group about an important matter.
Betsy Hopkins: Thank you, Cullen. I would like to take a few minutes before Shelly’s presentation to discuss the terrible situation that was reported in the Bangor Daily News article ("Employees were 'physically and emotionally torturing' residents at Hampden care facility for years, court docs reveal") last Friday that many of you have probably seen. This was a case of pretty significant abuse that occurred over a period of time at a home in the Hampden area. I can’t tell you how upsetting it was hearing about that. I also wanted that group to know that when you review the report it has some graphic information in it, and how incredibly upsetting it is to read it – for staff at OADS and I’m certain very upsetting for people receiving services, advocates, family members, and anyone in the field. I wanted to acknowledge that up front. I’m going to give you the little bit of information we have – it stems from a report that was made to Adult Protective Services (APS) in January 2022. Generally, when something like this happens it’s reported to APS and then reported to the Police, which is what happened in this situation. Law enforcement took the lead in those cases. At the time the police took the lead they asked the Department to defer further investigation, which is standard practice when law enforcement is involved. In the course of their investigation, they uncovered other things about which we hadn’t known. At this point in time, we don’t have all the details in that criminal case as it’s still going through the court system. The article talks about the one person found guilty, but there are still pending cases against other people. We don’t have the ability to discuss the case at this moment in time. I can tell you that we’re reviewing the actions taken in the case, and the processes we have in place to ensure this doesn’t happen again. We’re working very closely with Disability Rights Maine (DRM), and our crisis team in that area is supporting the individuals. It’s a hard thing to talk about but I wanted to acknowledge it up front. Our goal is to put together some additional information about the case when we’re able to and then share that more widely.
Cullen: Thank you for your efforts at transparency about this which is very important. This is a horror story, and reading it I immediately pictured my son, it really grabs all of us in a horrific way to see how this can and has happened. I appreciate you opening this dialogue up, because talking about it is helpful and I think therapeutic – to do what we can to heal from this and to ensure this never happens again.
Discussion:
-A self-advocate thanked Betsy and stated that her heart goes out to everyone. It was asked if the Maine Developmental Services Oversight and Advisory Board (MDSOAB) was or is involved.
Cullen: The MDSOAB only received this information today – so we’re reacting to this in real time too.
-A provider asked if the deferred investigation was just for that specific home, the organization involved, or both.
Betsy: In this case it involved both because there were interviews occurring all around, individuals in the home and the agency.
-It was asked how long the investigation was deferred, because that’s a long time to defer investigation.
Betsy: The investigation is still ongoing.
-A parent stated that she immediately thinks of her son, who is nonverbal, and it’s terrifying and sickening. She stated she wonders about all of the professions that touch the lives of people who are getting abused – could a provider in the healthcare field have discovered this? How did this not come up somewhere else for such a long period of time?
Lucas Cuellar – Disability Rights Maine (DRM): DRM will be working together with Crisis Services to do monitoring. For us, like many of you, we ask how did we not become aware of this sooner and how can we make sure this doesn’t occur again? We’re reaching out to residents of that particular agency to do follow-up, monitoring of homes, etc. and re-doubling our efforts to get to as many places as we can as quickly as we can. I have to wonder about this occurring during COVID and lockdowns, and now that we’re able to get out in person in a different way it feels helpful to me.
Cullen: This is a very sad and tragic situation. We had that awful tragedy in Lewiston last year. We still have people vulnerable in closed systems. We need to have more open systems so that this type of egregiousness can’t happen ever again. Betsy, thank you for your courage in addressing this directly – you’re in a difficult situation. It’s important that we’ve started the dialogue.
Featured Speaker: Shelly King, Transition Liaison Specialist, DHHS-OADS. www.maine.gov/dhhs/oads Topic: An Update on the Transition Liaison Project and the Community Resource Coordinators.
Cullen: I am pleased to welcome Shelly King, Transition Liaison Specialist with DHHS-OADS, who will be presenting an update on the Transition Liaison Project and the Community Resource Coordinators. These two projects are important pieces of the Lifespan project and I’m excited to have updates shared today. Thank you for being here, Shelly, and presenting this information!
Betsy Hopkins: I’m going to start us off for the first part of the presentation. I wanted to start out by saying when I first started in my position, I came to this Coalition and saw the great work started on Transition. This Coalition got this work started, along with many family members.
Shelly King: We did take a look at the Coalition’s Blueprint for Effective Transition, along with other national models and other feedback received, in doing this transition work.
Betsy: We’re so excited to share updates on these two important projects – which are both very much connected to the Lifespan Waiver in the future, which is where we’ll start in the presentation.
Begin Presentation (Click here for the presentation)
Shelly King: It’s been a really nice addition for the Community Resource Coordinators to connect our families to Sara for housing-related matters.
Discussion:
-It was asked how people know what districts they’re in.
Shelly: There are DHHS districts, and I can link to that in the chat.
-A provider stated that MACSP holds monthly meetings and there’s been confusion around how CRC is being piloted when the corresponding waiver hasn’t been drafted yet. It was asked if they could elaborate on this.
Betsy: This is a pilot. The CRCs are responsible for the PCP and all of the things that are required in case management. The role of the CRC, what it looks like, and data they’re gathering is being captured in the pilot. This is how we envision it working in Lifespan, but doing this project now allows us to pilot this and make adjustments if needed for Lifespan.
-A self-advocate stated that historically there’s a massive gap between school-age services and adult services. She asked if the brain injury community is also included in this project. She also asked if other populations are included in the pilot.
Shelly: For this pilot, people with brain injury are not included, which saddens me. However, it’s important to have a scope and this pilot is for Sections 21 and 29. This doesn’t mean that we won’t learn from this and then perhaps translate that to people with brain injury.
Cullen: Thank you both for being here today, for all of your work, and sharing all of this information with the Coalition!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Kim Humphrey, Founder and President, Community Connect. communityconnectme.org Topic: Journey with Jake by Charmaine Daniels and information on a digital stories workshop.
Cullen: We also have Kim Humphrey, Founder and President of Community Connect presenting Journey with Jake by Charmaine Daniels and providing information on a digital stories workshop. Thank you for being here Kim!
Kim Humphrey: Thank you, Cullen. Community Connect has the mission to connect families, caregivers, and communities to improve the system of care for people with developmental disabilities and related conditions. The visibility of the disability community is so important. In 2020, we turned our network into a 501c3 Nonprofit with the mission to connect families, caregivers, and communities to improve the system of care for people with developmental disabilities and related conditions. Our initial focus was on being able to create and share stories and facilitate that within the disability community. This led to the Connecting Voices Project which includes the digital story making trainings, the Digital Stories series, and sharing the stories through the creation of the film Invisible. We’ve had screenings of the film, and there’s an upcoming screening on 9/25 at 6pm at the Rice Public Library in Kittery. The next Digital Stories workshop will be in April/May 2025.
Begin Presentation (Click here for the presentation) (click here for the video that was shown as part of the presentation)
Kim: If you’re not good with technology but still want to be involved with digital stories we have people who can help with that.
Cullen: That video was amazing; thank you for sharing this with us!
Discussion:
-It was asked if there was a plan to get these videos out to larger audiences. It would be very impactful if they were screened at movie theaters (the Nickelodeon in Portland for instance), community events, etc.
Kim: We haven’t been to Portland yet and we follow leads when we get them. I’d be happy to talk to you more if you have other ideas about getting these stories out there, because that’s what we want too,
-It was stated that these digital stories are fabulous. It would be great to show these at the Scarborough Library.
-A self-advocate stated that having some of the stories shown at a public movie theater might pose some challenges. She added that having these digital stories be part of the trainings for providers would be very advantageous for all involved.
Cullen: Thank you, Kim, for this presentation and all of your work on digital storytelling, which is one of the best advocacy tools!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Richard Estabrook, Region 3 Review Committee Member Appointed by the MDSOAB. Topic: The State of Maine’s Dental System for people with ID/DD.
Cullen: We’re also joined by Richard Estabrook, Region 3 Review Committee Member Appointed by the MDSOAB presenting on the State of Maine’s Dental System for people with ID/DD.
Richard Estabrook: The MDSOAB is designated by State Statute to have a series of 3-person committees. I serve on the 3-person committee in the Lewiston area. The Committee reviews about 20-25 people each year. Every once and a while we’d run into people with self-injurious behavior – hitting their jaw or face. The PCP team suspected this was their way of communicating a dental issue. We’re not supposed to use behavior modification techniques if the behavior is medically caused, so it’s very important to determine if this is the case and someone needs dental work. There were significant delays in receiving dental work. The other 3-person committees were running into the same issue. As such, the MDSOAB created a subcommittee to address the state of Maine’s dental system for people with ID/DD.
Begin Presentation (Click here for the presentation)
Richard: The basic right under Maine law is that people with ID/DD are entitled to have prompt and appropriate dental treatment. We know that is not happening universally across the state. Dr. Pavurulu (Dr P) is the major provider of dental services to persons with intellectual disabilities or autism in Maine, especially the persons who need sedation. As of the end of February 2024, Dr. P had 247 patients who needed sedation, and 134 who did not need sedation. Dr. P schedules approximately four persons per day for dental services. For persons who need sedation, visits are 18-24 months between each visit. As of December 15, 2023, there were 240 people who needed dental sedation on his waitlist. This is indicative that there is a large gap in dental options in Maine. As far as other treatment options that are available – it’s very limited. Very few dentists accept MaineCare for dental insurance, which is a very large barrier (see slide 4 of the presentation for more information). There are different levels of sedation that some people may not know about – mild, moderate, deep, and general anesthesia (see slide 5 of the presentation of more information). The higher levels of sedation would generally occur in medical settings, whereas the lower levels could be used in dental offices. Analyzing and identifying the needed level of sedation that someone might need, and documenting this in the PCP might provide data that could be taken to the Legislature to advocate for funding.
Discussion:
-A self-advocate stated that she used to go to the dental clinic at UNE.
Richard: We are aware of UNE’s dental clinic. We haven’t succeeded in having a conversation with them on this yet. One of our visions of where the system in Maine could go is to incorporate the UNE clinic in a much more regular way into the possible treatment options for people with ID/DD.
Craig Patterson, DHHS-OADS: I’m continuing to reach out to UNE, and they’ve tried to reach out to me. So, we’re continuing to try to start that dialogue.
-A self-advocate stated that the clinics have dental students working at the clinic; the first visit you have to be in the dental chair for four hours – this complicates transportation among many other things.
Richard: From a systemic perspective these details are very important. Going to the dentist isn’t a pleasant experience for people generally speaking, but going and sitting in a chair for four hours could definitely be a barrier and must be taken into account as we address the issue of the state meeting its legal obligations that people are entitled to prompt and appropriate dental treatment. Our survey of other dental services is not complete, and it’s not thoroughly comprehensive. But from what we can determine right now, the need greatly exceeds the supply. There used to be a dental clinic in Portland, which closed eight or so years ago. Looking at what we believe to be the extent of the need, it’s our recommendation that the State fund another dental clinic in southern Maine. We feel this is necessary, especially considering the current waitlist for Dr. P. If we proceed by piecemealing together dentists that will take MaineCare it will simply take too long to meet this unmet need. We’re hoping that Evergreen will come forward with accurate information regarding dental needs.
-A self-advocate stated that there was a presentation years ago at a Coalition meeting in which a dentist presented. There was a comment at that meeting that dentists have to be able to re-pay their student loans. This comment was concerning. She also stated that dentistry was barbaric during the Pineland days. Dental students ought to have the history of these abhorrent practices included in their training.
Richard: The fact that dental students have student loans could actually open the door to having the State offer some type of loan reimbursement or something as an incentive to have dentists treat this population. Regarding dentistry at Pineland, people were more likely to have their teeth completely pulled versus receiving actual dental care. I was not present during those days at Pineland, so I can’t speak from my own experience but what I’ve heard people say to me gave my shivers – to think what was happening to people at Pineland.
-A self-advocate stated that a common practice at Pineland was to also pull the teeth of people who would bite staff as a behavioral issue.
Cullen: Thank you for all of this information, Richard! We definitely have a lot of work to do to see that people with ID/DD in Maine have access to the dental treatment to which they’re entitled. Thank you again, well done!
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
Betsy Hopkins: Our work with the Division of Licensing to develop a new HCBS Agency Licensing Rule continues. A draft of the Rule is currently at the AG’s office. When this returns to us it will go out for public comment – likely end of September/early October. The Licensing will be at an agency level and include community support, employment support, and all residential support programs (including 1-person homes).
We also continue to work on rate setting. We hope to provide an update on that soon.
We will also be submitting our Lifespan plan to CMS (Centers for Medicare and Medicaid Services) very soon. It is currently out for public comment. It will also go to the Legislature in the next Session,
Sara Fleurant: We will be holding a Housing Listening Session to review the survey results and hear any feedback or questions. The Session will be held on October 1st at 10:00am via Zoom: https://mainestate.zoom.us/j/81902523202?pwd=DsN1KUsaKgKGA147TamKhwjx6Pq6Tg.1
-DHHS-OADS Training and Development of Services/Supports for Self-Direction Resources and Tools
Cullen: Thank you both for being here and for providing all of this information!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/ocfs -
Betsy: Alina Smith is no longer in the position, and I don’t believe they’ve filled the position yet.
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling had to leave the meeting early, but sent the following update via email:
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: The major update I gave at the beginning of the meeting about our re-doubled efforts to do outreach and monitoring. I also wanted to thank Richard on his work on the dental issue. We are continuing to minimize the use of restraint in Maine as much as possible and looking at the “why” behind behavior is a major part of that. DRM’s Youth Self-Advocacy project continues and has been wonderful. If people would like to receive updates about the Youth Self-Advocate events, please feel free to reach out to me ([email protected]). Additionally, Disability Rights Maine's 21st Annual Celebration will take place on Thursday October 17th, 2024, at the Hilton Garden Inn in Freeport. We will be offering another enjoyable and informative evening focused on disability rights, this time highlighting our keynote speaker, Matt Webster, a leader in Maine's Deaf community. Purchase a ticket or sponsorship today!
Cullen: Thank you for being here, Lucas!
Federal & Housing Updates:
Cullen:
State Legislature Update:
Cullen: The whole 132nd Legislature will be elected in November. Every seat in the Legislature is up for election/re-election this fall, with about 1/3 of seats expected to turn over. Committees will change. There are Legislators terming out. There are contested elections. Please reach out to candidates running for office, educate them on the needs of people with disabilities in Maine, and continue to raise your voice and tell your stories so that people elected to the Legislature are well-poised to make good decisions in the 132nd Legislature. Sharing personal stories and digital storytelling are the most effective forms of advocacy and is essential to ensure we move the needle forward. Thank you all!
Other Business: None
The next meeting will be on ***Monday, October 21, 2024, 12-2:00pm, *** via Zoom*.
***Please note this is the third Monday of the month due to the holiday***
Featured Speaker: Dr. Megan Welter, Associate Commissioner of Public Education, Maine Department of Education (DOE). Topic: An update on Maine’s plan to transition oversight of educational plans for preschool-aged children with disabilities from the Child Developmental Services (CDS) agency to the local public-school systems.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2024 the October and November meetings will be the 3rd Monday due to the holidays)
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. Cullen also acknowledged the unfortunate recent passing of Laurie Kimball. This is a tragic loss, she was a fierce advocate, a warrior, and she will be sorely missed.
Cullen: Before we get to our featured speakers, Betsy wanted to address the group about an important matter.
Betsy Hopkins: Thank you, Cullen. I would like to take a few minutes before Shelly’s presentation to discuss the terrible situation that was reported in the Bangor Daily News article ("Employees were 'physically and emotionally torturing' residents at Hampden care facility for years, court docs reveal") last Friday that many of you have probably seen. This was a case of pretty significant abuse that occurred over a period of time at a home in the Hampden area. I can’t tell you how upsetting it was hearing about that. I also wanted that group to know that when you review the report it has some graphic information in it, and how incredibly upsetting it is to read it – for staff at OADS and I’m certain very upsetting for people receiving services, advocates, family members, and anyone in the field. I wanted to acknowledge that up front. I’m going to give you the little bit of information we have – it stems from a report that was made to Adult Protective Services (APS) in January 2022. Generally, when something like this happens it’s reported to APS and then reported to the Police, which is what happened in this situation. Law enforcement took the lead in those cases. At the time the police took the lead they asked the Department to defer further investigation, which is standard practice when law enforcement is involved. In the course of their investigation, they uncovered other things about which we hadn’t known. At this point in time, we don’t have all the details in that criminal case as it’s still going through the court system. The article talks about the one person found guilty, but there are still pending cases against other people. We don’t have the ability to discuss the case at this moment in time. I can tell you that we’re reviewing the actions taken in the case, and the processes we have in place to ensure this doesn’t happen again. We’re working very closely with Disability Rights Maine (DRM), and our crisis team in that area is supporting the individuals. It’s a hard thing to talk about but I wanted to acknowledge it up front. Our goal is to put together some additional information about the case when we’re able to and then share that more widely.
Cullen: Thank you for your efforts at transparency about this which is very important. This is a horror story, and reading it I immediately pictured my son, it really grabs all of us in a horrific way to see how this can and has happened. I appreciate you opening this dialogue up, because talking about it is helpful and I think therapeutic – to do what we can to heal from this and to ensure this never happens again.
Discussion:
-A self-advocate thanked Betsy and stated that her heart goes out to everyone. It was asked if the Maine Developmental Services Oversight and Advisory Board (MDSOAB) was or is involved.
Cullen: The MDSOAB only received this information today – so we’re reacting to this in real time too.
-A provider asked if the deferred investigation was just for that specific home, the organization involved, or both.
Betsy: In this case it involved both because there were interviews occurring all around, individuals in the home and the agency.
-It was asked how long the investigation was deferred, because that’s a long time to defer investigation.
Betsy: The investigation is still ongoing.
-A parent stated that she immediately thinks of her son, who is nonverbal, and it’s terrifying and sickening. She stated she wonders about all of the professions that touch the lives of people who are getting abused – could a provider in the healthcare field have discovered this? How did this not come up somewhere else for such a long period of time?
Lucas Cuellar – Disability Rights Maine (DRM): DRM will be working together with Crisis Services to do monitoring. For us, like many of you, we ask how did we not become aware of this sooner and how can we make sure this doesn’t occur again? We’re reaching out to residents of that particular agency to do follow-up, monitoring of homes, etc. and re-doubling our efforts to get to as many places as we can as quickly as we can. I have to wonder about this occurring during COVID and lockdowns, and now that we’re able to get out in person in a different way it feels helpful to me.
Cullen: This is a very sad and tragic situation. We had that awful tragedy in Lewiston last year. We still have people vulnerable in closed systems. We need to have more open systems so that this type of egregiousness can’t happen ever again. Betsy, thank you for your courage in addressing this directly – you’re in a difficult situation. It’s important that we’ve started the dialogue.
Featured Speaker: Shelly King, Transition Liaison Specialist, DHHS-OADS. www.maine.gov/dhhs/oads Topic: An Update on the Transition Liaison Project and the Community Resource Coordinators.
Cullen: I am pleased to welcome Shelly King, Transition Liaison Specialist with DHHS-OADS, who will be presenting an update on the Transition Liaison Project and the Community Resource Coordinators. These two projects are important pieces of the Lifespan project and I’m excited to have updates shared today. Thank you for being here, Shelly, and presenting this information!
Betsy Hopkins: I’m going to start us off for the first part of the presentation. I wanted to start out by saying when I first started in my position, I came to this Coalition and saw the great work started on Transition. This Coalition got this work started, along with many family members.
Shelly King: We did take a look at the Coalition’s Blueprint for Effective Transition, along with other national models and other feedback received, in doing this transition work.
Betsy: We’re so excited to share updates on these two important projects – which are both very much connected to the Lifespan Waiver in the future, which is where we’ll start in the presentation.
Begin Presentation (Click here for the presentation)
Shelly King: It’s been a really nice addition for the Community Resource Coordinators to connect our families to Sara for housing-related matters.
Discussion:
-It was asked how people know what districts they’re in.
Shelly: There are DHHS districts, and I can link to that in the chat.
-A provider stated that MACSP holds monthly meetings and there’s been confusion around how CRC is being piloted when the corresponding waiver hasn’t been drafted yet. It was asked if they could elaborate on this.
Betsy: This is a pilot. The CRCs are responsible for the PCP and all of the things that are required in case management. The role of the CRC, what it looks like, and data they’re gathering is being captured in the pilot. This is how we envision it working in Lifespan, but doing this project now allows us to pilot this and make adjustments if needed for Lifespan.
-A self-advocate stated that historically there’s a massive gap between school-age services and adult services. She asked if the brain injury community is also included in this project. She also asked if other populations are included in the pilot.
Shelly: For this pilot, people with brain injury are not included, which saddens me. However, it’s important to have a scope and this pilot is for Sections 21 and 29. This doesn’t mean that we won’t learn from this and then perhaps translate that to people with brain injury.
Cullen: Thank you both for being here today, for all of your work, and sharing all of this information with the Coalition!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Kim Humphrey, Founder and President, Community Connect. communityconnectme.org Topic: Journey with Jake by Charmaine Daniels and information on a digital stories workshop.
Cullen: We also have Kim Humphrey, Founder and President of Community Connect presenting Journey with Jake by Charmaine Daniels and providing information on a digital stories workshop. Thank you for being here Kim!
Kim Humphrey: Thank you, Cullen. Community Connect has the mission to connect families, caregivers, and communities to improve the system of care for people with developmental disabilities and related conditions. The visibility of the disability community is so important. In 2020, we turned our network into a 501c3 Nonprofit with the mission to connect families, caregivers, and communities to improve the system of care for people with developmental disabilities and related conditions. Our initial focus was on being able to create and share stories and facilitate that within the disability community. This led to the Connecting Voices Project which includes the digital story making trainings, the Digital Stories series, and sharing the stories through the creation of the film Invisible. We’ve had screenings of the film, and there’s an upcoming screening on 9/25 at 6pm at the Rice Public Library in Kittery. The next Digital Stories workshop will be in April/May 2025.
Begin Presentation (Click here for the presentation) (click here for the video that was shown as part of the presentation)
Kim: If you’re not good with technology but still want to be involved with digital stories we have people who can help with that.
Cullen: That video was amazing; thank you for sharing this with us!
Discussion:
-It was asked if there was a plan to get these videos out to larger audiences. It would be very impactful if they were screened at movie theaters (the Nickelodeon in Portland for instance), community events, etc.
Kim: We haven’t been to Portland yet and we follow leads when we get them. I’d be happy to talk to you more if you have other ideas about getting these stories out there, because that’s what we want too,
-It was stated that these digital stories are fabulous. It would be great to show these at the Scarborough Library.
-A self-advocate stated that having some of the stories shown at a public movie theater might pose some challenges. She added that having these digital stories be part of the trainings for providers would be very advantageous for all involved.
Cullen: Thank you, Kim, for this presentation and all of your work on digital storytelling, which is one of the best advocacy tools!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Richard Estabrook, Region 3 Review Committee Member Appointed by the MDSOAB. Topic: The State of Maine’s Dental System for people with ID/DD.
Cullen: We’re also joined by Richard Estabrook, Region 3 Review Committee Member Appointed by the MDSOAB presenting on the State of Maine’s Dental System for people with ID/DD.
Richard Estabrook: The MDSOAB is designated by State Statute to have a series of 3-person committees. I serve on the 3-person committee in the Lewiston area. The Committee reviews about 20-25 people each year. Every once and a while we’d run into people with self-injurious behavior – hitting their jaw or face. The PCP team suspected this was their way of communicating a dental issue. We’re not supposed to use behavior modification techniques if the behavior is medically caused, so it’s very important to determine if this is the case and someone needs dental work. There were significant delays in receiving dental work. The other 3-person committees were running into the same issue. As such, the MDSOAB created a subcommittee to address the state of Maine’s dental system for people with ID/DD.
Begin Presentation (Click here for the presentation)
Richard: The basic right under Maine law is that people with ID/DD are entitled to have prompt and appropriate dental treatment. We know that is not happening universally across the state. Dr. Pavurulu (Dr P) is the major provider of dental services to persons with intellectual disabilities or autism in Maine, especially the persons who need sedation. As of the end of February 2024, Dr. P had 247 patients who needed sedation, and 134 who did not need sedation. Dr. P schedules approximately four persons per day for dental services. For persons who need sedation, visits are 18-24 months between each visit. As of December 15, 2023, there were 240 people who needed dental sedation on his waitlist. This is indicative that there is a large gap in dental options in Maine. As far as other treatment options that are available – it’s very limited. Very few dentists accept MaineCare for dental insurance, which is a very large barrier (see slide 4 of the presentation for more information). There are different levels of sedation that some people may not know about – mild, moderate, deep, and general anesthesia (see slide 5 of the presentation of more information). The higher levels of sedation would generally occur in medical settings, whereas the lower levels could be used in dental offices. Analyzing and identifying the needed level of sedation that someone might need, and documenting this in the PCP might provide data that could be taken to the Legislature to advocate for funding.
Discussion:
-A self-advocate stated that she used to go to the dental clinic at UNE.
Richard: We are aware of UNE’s dental clinic. We haven’t succeeded in having a conversation with them on this yet. One of our visions of where the system in Maine could go is to incorporate the UNE clinic in a much more regular way into the possible treatment options for people with ID/DD.
Craig Patterson, DHHS-OADS: I’m continuing to reach out to UNE, and they’ve tried to reach out to me. So, we’re continuing to try to start that dialogue.
-A self-advocate stated that the clinics have dental students working at the clinic; the first visit you have to be in the dental chair for four hours – this complicates transportation among many other things.
Richard: From a systemic perspective these details are very important. Going to the dentist isn’t a pleasant experience for people generally speaking, but going and sitting in a chair for four hours could definitely be a barrier and must be taken into account as we address the issue of the state meeting its legal obligations that people are entitled to prompt and appropriate dental treatment. Our survey of other dental services is not complete, and it’s not thoroughly comprehensive. But from what we can determine right now, the need greatly exceeds the supply. There used to be a dental clinic in Portland, which closed eight or so years ago. Looking at what we believe to be the extent of the need, it’s our recommendation that the State fund another dental clinic in southern Maine. We feel this is necessary, especially considering the current waitlist for Dr. P. If we proceed by piecemealing together dentists that will take MaineCare it will simply take too long to meet this unmet need. We’re hoping that Evergreen will come forward with accurate information regarding dental needs.
-A self-advocate stated that there was a presentation years ago at a Coalition meeting in which a dentist presented. There was a comment at that meeting that dentists have to be able to re-pay their student loans. This comment was concerning. She also stated that dentistry was barbaric during the Pineland days. Dental students ought to have the history of these abhorrent practices included in their training.
Richard: The fact that dental students have student loans could actually open the door to having the State offer some type of loan reimbursement or something as an incentive to have dentists treat this population. Regarding dentistry at Pineland, people were more likely to have their teeth completely pulled versus receiving actual dental care. I was not present during those days at Pineland, so I can’t speak from my own experience but what I’ve heard people say to me gave my shivers – to think what was happening to people at Pineland.
-A self-advocate stated that a common practice at Pineland was to also pull the teeth of people who would bite staff as a behavioral issue.
Cullen: Thank you for all of this information, Richard! We definitely have a lot of work to do to see that people with ID/DD in Maine have access to the dental treatment to which they’re entitled. Thank you again, well done!
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
Betsy Hopkins: Our work with the Division of Licensing to develop a new HCBS Agency Licensing Rule continues. A draft of the Rule is currently at the AG’s office. When this returns to us it will go out for public comment – likely end of September/early October. The Licensing will be at an agency level and include community support, employment support, and all residential support programs (including 1-person homes).
We also continue to work on rate setting. We hope to provide an update on that soon.
We will also be submitting our Lifespan plan to CMS (Centers for Medicare and Medicaid Services) very soon. It is currently out for public comment. It will also go to the Legislature in the next Session,
Sara Fleurant: We will be holding a Housing Listening Session to review the survey results and hear any feedback or questions. The Session will be held on October 1st at 10:00am via Zoom: https://mainestate.zoom.us/j/81902523202?pwd=DsN1KUsaKgKGA147TamKhwjx6Pq6Tg.1
-DHHS-OADS Training and Development of Services/Supports for Self-Direction Resources and Tools
Cullen: Thank you both for being here and for providing all of this information!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/ocfs -
Betsy: Alina Smith is no longer in the position, and I don’t believe they’ve filled the position yet.
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling had to leave the meeting early, but sent the following update via email:
- The Maine Commission for the Deaf, Hard of Hearing and Late Deafened is inviting you to the Hall of Flags for the 33rd Annual Tea in celebration of Deaf Culture Week! This event is taking place on Thursday, September 19, 2024, from 2:00 to 4:00 p.m. in the Hall of Flags, at the State House. The keynote speaker is Kellynette Gomez, LCSW. The month of September is Deaf Awareness Month and the last full week of September 22-28, 2024, is Deaf Culture Week.
- Annette Stevens has been selected as the new Assistant Director for the Division for the Blind and Visually Impaired. Annette was most recently the Pathways to Partnerships Grant Manager. That position is currently posted. It would be a great opportunity for someone with an interest in transition services systems to work here in Maine.
- October is National Disability Employment Awareness Month and this year the theme is “Access to Good Jobs for All”. We will be putting out a calendar of events for the month on our webpage and via social media.
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: The major update I gave at the beginning of the meeting about our re-doubled efforts to do outreach and monitoring. I also wanted to thank Richard on his work on the dental issue. We are continuing to minimize the use of restraint in Maine as much as possible and looking at the “why” behind behavior is a major part of that. DRM’s Youth Self-Advocacy project continues and has been wonderful. If people would like to receive updates about the Youth Self-Advocate events, please feel free to reach out to me ([email protected]). Additionally, Disability Rights Maine's 21st Annual Celebration will take place on Thursday October 17th, 2024, at the Hilton Garden Inn in Freeport. We will be offering another enjoyable and informative evening focused on disability rights, this time highlighting our keynote speaker, Matt Webster, a leader in Maine's Deaf community. Purchase a ticket or sponsorship today!
Cullen: Thank you for being here, Lucas!
Federal & Housing Updates:
Cullen:
- HR 7024 The Tax Relief for American Families and Workers Act – On 8/1, the Tax Relief for American Families and Workers Act (formerly S 1557/ HR 3238 The Affordable Housing Credit Improvement Act) was brought to the Senate floor for a vote, and it failed to pass. The legislation passed the House of Representatives earlier this year by a wide bipartisan vote of 357 to 70. The provisions in H.R. 7024 would finance the construction of over 200,000 new affordable homes nationwide. As a result, these provisions would finance 1,500 new rental homes in Maine generating new jobs throughout Maine.
- FY 25 Budget – Congress is in the midst of FY 25 budget negotiations. Advocates are requesting the highest funding increases possible for programs related to housing and homelessness. With it being an election year Congress may decide to pass a Continuing Resolution, which would be a short-term measure to fund the Federal government at FY 24 levels.
- House T-HUD Bill: On 7/10 the House Appropriations Committee passed its proposal to cut funding for HUD programs in FY 25 spending bill. Overall, the proposal would fund HUD at $73.2 billion – $2.3 billion, or about 3%, less than the FY 24 funding level. No housing-related amendments were passed.
- Senate T-HUD Bill: in August, the Senate’s THUD Appropriations Committee approved its FY 25 draft spending bill. Overall, the bill provides $78.2 billion for HUD’s affordable housing, homelessness, and community development programs, an increase of $8.2 billion – or more than 10% – over FY24-enacted levels. The bill proposes:
- $35.3B for $2.9B increase for Tenant-Based Rental Assistance (TBRA) program ($2.9B increase vs FY 24 and $3 billion more than the funding proposed in the House THUD bill). The funding provided may be sufficient to cover the full cost of renewing existing TBRA voucher contracts.
- Increased funding for: Project-Based Rental Assistance (PBRA), the HOME Investment Partnership Program (HOME), and Section 202 Housing for the Elderly.
- The American Housing and Economic Mobility (AHEM) Act of 2024 – Senators Elizabeth Warren (D-MA) and Raphael Warnock (D-GA) and Representative Emanuel Cleaver (D-MO) reintroduced the American Housing and Economic Mobility (AHEM) Act in the Senate and House on 7/9. The bill would provide the large-scale investments required to construct nearly 3 million new units of affordable housing. If enacted, the AHEM Act would provide:
- More than $44 billion dollars in the national Housing Trust Fund (HTF) annually for 10 years, resulting in $445 billion in total investments to build, repair, and operate nearly 2 million homes for households with low incomes.
- More than $1 billion in the construction of new rental housing and homeownership opportunities in rural communities.
- S 570/H.R. 1342, 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.
- S 2767/HR 5408 SSI Savings Penalty Elimination Act – This bipartisan, bicameral bill was reintroduced in the Senate and House. 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. After advocacy from Maine Senator Collins signed on to this bill.
- HR 7055 The Eliminating the Marriage Penalty in SSI Act (EMPSA) – This bill excludes a spouse's income and resources when determining eligibility for Supplemental Security Income (SSI), and disregards marital status when calculating the SSI benefit amount, for an adult who has a diagnosed intellectual or developmental disability. (SSI is a federal income supplement program designed to help aged, blind, and disabled individuals with limited income and resources meet basic needs.).
- 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.
- S 1332 / HR 2941 The Recognizing the Role of Direct Support Professionals Act – The Recognizing the Role of Direct Support Professionals Act would give a standard occupational classification to Direct Support Professionals, an important first step toward professionalizing this career and improving salaries and training. The Senate passed this bill the week of 5/6. The House has yet to approve its companion bill.
- S4120 / HR 7994 The Long-term Care Workforce Support Act – This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Disability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.
- HR 7267 Disability Community Act of 2023 – This bill would amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental disabilities.
- S 7302 The Credit for Caregiving Act of 2024 (Sen. Michael Bennett (D-CO)) – This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit does not exceed $5,000 per year.
- HR 3380 - HEADs UP Act of 2023 (Rep. Seth Moulton (D-MA)) – This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities, as necessary.
- HR 553 Workplace Choice and Flexibility for Individuals with Disabilities Act (Rep. Glenn Grothman (R-WI-6)) – This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.
- HR 1296 Restoration of Employment Choice for Adults with Disabilities Act (Rep. Glenn Grothman (R-WI-6)) – To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.
State Legislature Update:
Cullen: The whole 132nd Legislature will be elected in November. Every seat in the Legislature is up for election/re-election this fall, with about 1/3 of seats expected to turn over. Committees will change. There are Legislators terming out. There are contested elections. Please reach out to candidates running for office, educate them on the needs of people with disabilities in Maine, and continue to raise your voice and tell your stories so that people elected to the Legislature are well-poised to make good decisions in the 132nd Legislature. Sharing personal stories and digital storytelling are the most effective forms of advocacy and is essential to ensure we move the needle forward. Thank you all!
Other Business: None
The next meeting will be on ***Monday, October 21, 2024, 12-2:00pm, *** via Zoom*.
***Please note this is the third Monday of the month due to the holiday***
Featured Speaker: Dr. Megan Welter, Associate Commissioner of Public Education, Maine Department of Education (DOE). Topic: An update on Maine’s plan to transition oversight of educational plans for preschool-aged children with disabilities from the Child Developmental Services (CDS) agency to the local public-school systems.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2024 the October and November meetings will be the 3rd Monday due to the holidays)
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].