July 10, 2023
Minutes
Minutes
Attendees via Zoom: Alli Vercoe, Amanda Parker, Ann-Marie Mayberry, Betsy Hopkins, Bonnie-Jean Brooks, David Cowing, Debbie Dionne, Helen Hemminger, Jennifer Frey, Jamie Whitehouse, Carol Snyder, J Richardson Collins, Julianne Zaharis, Kim Humphrey, Lane Simsarian, Liz Hansen, Margaret Cardoza, Maria Cameron, Nancy Cronin, Paula Bush, Poppy Chumchop, Robin Levesque, Scott McKeough, Shane Ashe, Shelly King, Staci Converse, Stacy Lamontagne, Teresa Barrows, Lorraine DeFreitas, Titus O’Rourke, Mark Kemmerle, Vickey Merrill, Cullen Ryan, and a few people who didn’t identify themselves and/or left prior to the conclusion of the meeting.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (MDDC). www.maineddc.org Topic: Overview of the new history of website: Shadows of Pineland.
Cullen: I am pleased to welcome Nancy Cronin, Executive Director of Maine Developmental Disabilities Council (MDDC) who will be presenting an overview of the new history website: Shadows of Pineland. We have had presentations from some experts in the field providing the history of Maine’s system of care for people with ID/DD. Charlene Kinnelly and Skip MacGowan, who both have passed away, previously provided rich presentations on this history which is proudly displayed on the Coalition’s website. Nancy’s presentation today, and the coursebook she’s writing, will add to this! Thank you for being with us today, Nancy!
Nancy Cronin: Thank you for having me! The DD Council funded historical research on Pineland. I also work at Kennebec Community College and spoke with them about courses. One course this fall is an Introduction to Developmental Systems. I was asked to write a course book as part of this, a chapter of which I’ll review in this presentation. The Shadows of Pineland website is absolutely incredible. I’m going to focus on the timeline today. You’ll see a lot of themes – themes of workforce shortages, waitlists, people not being valued, etc. When you look at the history from the very beginning to today it’s fascinating and a bit of a spring – a spiral. We move forward in this kind of circular way. We have farther to go but we’re in the process of moving forward.
Begin presentation:
(Click here for Chapter 5: Poor Houses, Institutions, Eugenics, and Sterilization Laws, By Nancy Cronin, a draft chapter that will be ultimately included in a coursebook that Nancy is writing about the systems and laws that exist to support people with ID/DD. This material was referenced and used as the basis for context regarding the Shadows of Pineland presentation).
(Nancy provided a very in-depth overview of the Shadows of Pineland Timeline from the beginning through until 1961. Excerpts from the Timeline are italicized below; Nancy’s own words/explanation during the presentation are not italicized. Far more information can be found on the Timeline itself, including links to more in-depth information.)
Nancy: In the 1300s the word lunacy came to be to describe an individual who was mentally ill who had periods of time in which they fell into what society viewed as spells of their mental illness. The word idiocy also came to be used to describe an individual with an intellectual disability or physical disability. This use of language was awful. In the 15th century we got the word “insane” to describe an individual with mental illness. These are important words because we built our system on these horrible words. They carried a stigma for a very, very long time, for which there were consequences.
1850s: The Codification of Idiocy: Insanity was the view that if this group of people was treated, they could get better. Idiocy meant you could be trained. This is very different and two different systems. Why did we split these systems up? The only thing I could find is that bias from the 1700s.
1800s: Dorthea Dix: Dorthea Dix Worked to create the first mental health institutions (“mental asylums”) in the US. AMHI (Augusta Mental Health Institute, formerly the Maine Insane Hospital) and BMHI (Bangor Mental Health Institute, formerly Eastern Maine Insane Hospital) opened in Maine and filled quickly. People were sent there if people thought they could “get better”.
1880s: Rise of Institutions: There were Town Farms (Alms Houses) abuses. There were calls for a separate institution for those who were called the “feeble minded”.
1903: An Aside on Education: Compulsory education was codified into law, except for people with ID/DD.
1905: Committees Wrestle with “Feeble Minded” Problem: The Maine legislature demanded a separate home for this population. This is around the same time when society started looking at eugenics. This led to the very wrong belief that you could pass down any trait to any child. And people thought that people with ID/DD and certain physical disabilities could not “get better”. This false science led to a long history of sterilization to address this “problem”.
1908: The Maine School for the Feeble-Minded Opens: This is around the same time when orphanages were created around the country. What happened to the Town Farms that used to house orphans, the elderly, and Veterans? With the rise of other institutions for other populations, this left the elderly at the Town Farms, and as such they eventually became nursing homes.
1911: First Investigation: Only three years after opening problems were identified. However, they didn’t close Pineland, they started adding more and more beds.
1914: A Big Problem: Just six years after opening, the facility had 255 people, with a 160-person waitlist. Maine has been having waitlists since 1914 and that’s a problem.
1920s: Social Darwinism, Eugenics, and Sterilization: This led to forced hysterectomies for many women in Maine. As our technology increases and changes we need to take some time to debate and discuss as a collective community what these things mean. People make their own assumptions about genetics etc. if the conversation isn’t out there.
1931: A Second Sterilization Law: A new bill on sterilization was signed into law. This law made it easier to recommend these procedures for residents of institutions like Pineland, and coerce people with developmental disabilities, most of them women, to be sterilized.
1932: A Consolidation of Bureaucracy: There had to be a level of organization to manage the various different hospitals/institutions popping up in Maine. This led to the creation of the Department of Health and Welfare.
1933: Expansion of the School: Additional beds and buildings were added. Around this period of time is when they made it illegal to help someone who left Pineland.
1941: More Calls for Sterilization: In 1941, a bill came before the legislature to create a “State Board of Eugenics”, which would allow for involuntary sterilizations of “defectives” not residing in institutions.
1941: Furloughs for Residents: Residents were allowed to be granted the right for a temporary “leave”. Whereas residents at AMHI and BMHI were always allowed to leave.
1945: Expansion Continues: While the patient population would peak in the 1930s at around 1,500, Superintendent Kupelian would continue to advocate for expanding the numbers of residents - asking the public to support funding for up to 9,000 total patients.
1945: Educational Aside – Beginning of Special Education & the Board of Ed: People with physical disabilities started getting access to education.
1949: Vanessa’s Story – There are real people who lived there, this is not ancient history, and their stories are important. (There are various other personal stories linked on the Timeline the group is encouraged to read.)
1951: New Changes of Abuse and Neglect: It is important to note that there were some incredible, kind, caring people who worked at Pineland. Just as there were some staff who absolutely were not.
1954: The Rise of Parents Groups: At this point in time doctors would tell parents the best thing they could do is put their children into an institution and forget about them. Parents were blamed for their children’s disabilities. Being a parent and family member at this time was complicated. Many parents at this time did not forget about their children and instead stood up and fought hard. These groups and others like it would form the basis of the community care system in Maine.
1954: Parent’s Stories
1955: An Act relating to Education of Physically Handicapped or Exceptional Children: While still segregated from their non-disabled peers, this law opened up opportunities to children with developmental disabilities.
1956: Response to Abuse: The Maine Legislature, as such bodies are wont to do when faced with intractable systemic problems, on the recommendation of the Legislative Research Committee in 1955 created a Governor’s advisory committee to study the issue - the Maine Committee on Problems of the Mentally Retarded.
1957: A New Name and Visions – Pineland Hospital and Training center: Too often the “response” to a problem is simply rebranding, and that is what happened when Pineland underwent yet another name change.
1959: Bureau of Mental Health Formed: “The Bureau of Mental Health shall be responsible for the direction of the mental health programs in the institutions within the department and shall be responsible for the promotion and guidance of mental health programs within the several communities of the State.”
1961: Community Placement Calls for Larger Institution: New ideas were cropping up - it was beginning to be understood that services provided in the community were both more humane and less expensive. But even as a new infirmary to “house 134 totally dependent patients” was dedicated, Governor Reed called for more, saying, “the needs of this and other state hospitals continue to grow".
Nancy: I’ve studied institutions for years. What tends to happen is we start with public funding. But that isn’t enough. Then institutions start looking for grants. When you start shifting your money from the public to grants you have a different owner. That’s been the educational and medical model for years. When people are desperate for money things start changing.
Discussion:
Nancy: This history is so important because we need to change the way we think and change the system accordingly. It’s so important to understand why. Too often an Administration will come in and think it’s on them to make these changes etc., but this is 100s of years’ worth of problems that we all have to work to remedy.
-A self-advocate stated that for self-advocacy training they organized their training into three concepts: moral, medical, and societal. She stated that people were medically seen as broken, and they must be fixed and fit into society. Whereas the advocacy movement pivoted to illustrate that it’s not the person that is “broken” and needs to be fixed, but rather society.
Nancy: What I’m going over today is just one chapter of the textbook I’m writing. Other chapters delve into the topics of rights etc.
-A self-advocate added that whenever she and many of her friends and peers who were at Pineland hear the name “Pineland” referring to the current Pineland Farm, it’s triggering because that term is traumatic.
Nancy: Your point about this, and language in general, is such an important one. Hearing and seeing the name “Pineland” today, used in a positive way, could re-traumatizing for people. The personal stories that we saw on the Timeline are not ancient history – they are the fairly recent memories and stories of people who lived through this. Yet, it’s important that we are reminded of this history by still seeing the name Pineland. I’m going to zoom ahead to “Now” on the timeline, because there are dangers in thinking that the past was nostalgic, and just that – in the past. Because that is when the door is opened for history to repeat itself. Instead of “we should’ve done this” referring to the past, we ought to look at the history and examine how we can better move the system forward. How do we build a system in which people truly belong? We need to look at the system in a way that respects and understands the history. We’re not talking about two things: Why are we not recognizing that Pineland still exists, and their cheese and meatballs are available to buy at the grocery store? Why are we not recognizing trauma-informed care as it pertains to this?
Bonnie-Jean Brooks: This presentation was overwhelming and extremely informative. Thank you so much for this presentation. We have a lot of new agencies in Maine owned and operated by people who were very young, if they were even born yet, when Pineland closed. This is a history lesson that all providers ought to listen to.
-It was asked if Mackworth is included in the timeline/history.
Nancy: Because the Mackworth Island story has been told I didn’t include it. There’s a fascinating story about the slaves of Maine. There’s a book that talks about this young, freed, pregnant slave who was bounced back and forth from community to community because the towns didn’t want to have to take care of her unborn child. We often don’t think of slaves in Maine, but they were here.
-It was stated that this history needs to be out there for mass consumption – not just for providers but parents as well. People need to understand this history so we can prevent it from ever repeating itself.
Nancy: It’s not just the history of Pineland, it’s the history of eugenics, the history of local control, etc. Thank you very much for having me here today.
Cullen: Thank you Nancy, this was fantastic and very kind of you to so thoroughly research this and put it into perspective. I’m thrilled that you’re willing to come back this fall and finish the presentation, covering 1962 to the present. Thank you again and well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Helen Hemminger, Research and KIDS COUNT Associate, Maine Children’s Alliance. www.mekids.org Topic: 2023 Maine KIDS COUNT Data Book.
Cullen: Today we also are joined by Helen Hemminger, Research and KIDS COUNT Associate with Maine Children’s Alliance presenting on the 2023 Maine KIDS COUNT Data Book. Thank you, Helen, for being here today!
Helen Hemminger: Thank you for having me! If anyone would like a free copy of the full 2023 KIDS COUNT Data Book, please reach out to me ([email protected]).
Begin presentation (Click here for the presentation):
Discussion:
-It was asked if they hear from Boards of Education or towns.
Helen: Not really. I work with the Department of Education for data. The individual school districts have been inundated with requests for information.
Cullen: Thank you for this informative presentation, Helen. It’s great that this book is available and free for anyone who wants it. Thank you again!
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: We continue to partner with the National Disability Institute and providers who have applied for Innovation Grants to see how they’re going and look forward to looking at those outcomes and how they can inform the future of the system.
We continue working on our Lifespan Project. For up to date information on the work that is going on regarding our Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov). We’re excited about this project moving forward, and look forward to people reviewing the HCBS Lifespan Waiver Concept Paper and looking over that feedback. (Click here for the HCBS Lifespan Waiver Concept Paper – full paper; click here for the HCBS Lifespan Waiver Concept Paper Overview – Plain Language document.)
https://mainestate.zoom.us/meeting/register/tZcsd-Ggrj8iGdCRDwMM_moOfTKIyksF8EXT
If you need accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please contact Miranda Whalen at [email protected].
For updates regarding OADS’ Innovation Pilots that are underway you can go to: HCBS Innovation Pilot Grants | Department of Health and Human Services (maine.gov). We’ve put together webinars to highlight the proposals we received for the Innovation Pilots:
To find registration information about the Innovation Grants Webinar Series and see slides from the first presentation: https://www.maine.gov/dhhs/oads/about-us/initiatives/hcbs-innovation-pilot-grants
Cullen: Thank you for this update and for being here today, Betsy!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: Our work on the Transition Project is still underway. The fourth Transition Liaison Specialist began in June. That work is moving forward which is exciting. We continue to work with OADS on the Lifespan Waiver. It’s so exciting to have work going on with transition. I also wanted to say that I am retiring on 8/11. I wanted to thank this group. I very much admire everyone here and all their advocacy!
Cullen: Thank you for being here, Teresa, and thank you for all of your work at OCFS. You have been a gift to this group and to the system as a whole, and the very embodiment of collaboration as you’ve worked to implement effective transition strategies. You will be missed greatly, and I hope you continue to attend these meetings in your new retired capacity. Thank you again and congratulations on your retirement!
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed –
Titus O’Rourke: As this group knows, we applied for and received a $750,000 grant for Regional Transition Interagency Collaborations to create a seamless system of support by region to develop regional transition councils. We’re really trying to work towards the system of seamless transition services and a continuum of support post-secondary – including people understanding what those systems are and how to access them. The Maine Transition Regional Interagency Collaborative will work to support SAUs (School Administrative Units) to develop inter-collaboratives to support the transition services kids need. We were invited to the Council of State Governments (CSG), where we met with at least 30 Senators from around the country to look at and review policy that supports youth employment. We finished that and those policy briefs. We’re also working on developing a statewide Youth Summit, which will involve bringing in all youth organizations in Maine to develop and run the summit, which is exciting.
-It was suggested that Titus provide a presentation at a future Coalition meeting on the Office of Special Services and Inclusive Education (OSSIE).
Cullen: That is a wonderful idea. I’ll be in touch to figure out which month would be best for Titus to do just that! Thank you!
SMACT (Southern Maine Advisory Council on Transition):
The last meeting of the school year was on 5/5 and featured Diane Luce with Maine Medical Center presenting on benefits counseling. This year the meetings were held quarterly – it is unknown if meetings will continue to be quarterly next year or not. The SMACT website and the Coalition website are cross-linked for convenience and broader information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy ([email protected]).
Disability Rights Maine (DRM) Update:
Lane Simsarian: DRM, with funding from the Maine Health Access Foundation, conducted a research project that identified the barriers to accessing health care for Maine people with disabilities. The full report, "I Don't Get the Care I Need": Equitable Access to Health Care for Mainers with Disabilities, is available online, as is the plain language summary (click here for more information). With the completion of this report, a medical school is interested in working with us to build better training for their students, which is very exciting. We’re also working on a presentation which we hope to present at the SUFU Conference on how to be your own health advocate. A reminder that we would love to see people come to Disability Pride on 7/21 from 11am to 3pm in Mill Park in Augusta.
Cullen: Thank you, Lane!
LD 924 Task Force Update: No Update.
Federal & Housing Updates:
Cullen:
State Legislature Update
Laura Cordes – Maine Association for Community Service Providers (MACSP) could not attend today’s meeting but sent the following update via email:
As I know you are aware, the Legislature has yet to fully finish its business! After AFA addresses the table this week, I'll update our Legislative Google Doc and note which bills were signed into law, which were funded either as part of the budget or off the Special Appropriations table, or got carried over etc.
Cullen: This Legislature had a wonderful opportunity through the creation of the Joint Select Committee on Housing to really do something in terms of funding housing development. For the first time we saw a Governor’ Budget that included funding for housing. And in addition to that a separate bill that includes funding for rural affordable housing was enacted. In total more than $65 million for affordable housing was funded this Legislative Session. I’m hoping that this housing will be inclusive of populations in need of permanent supportive housing including people with ID/DD and people experiencing homelessness.
Bill Tracking Updates: For specific information on the bills below, along with others, please see the MCHQS Bills of Interest Page:
There are a lot of very helpful links in the Google Doc, including the Legislature’s webpage and the Testimony Submission webpage. Please feel free to add things to the Google Doc. or reach out to Laura with any questions!
Cullen: This was a very busy Legislative Session. I want to thank everyone in this group for raising their voices and telling their stories; doing so is very powerful and truly helps Legislators make good decisions for the system of care for people with ID/DD in Maine.
Cullen: I want to thank everyone for their participation today. Going back through the history of the system of care is difficult and can be triggering. These are important conversations to have, and it’s important to have them in a supportive environment. Thank you all for being so thoughtful and respectful and for providing that support. We are all better for it. Thank you for all you do!
Other Business:
The next meeting will be on Monday, September 11, 2023, 12-2pm, via Zoom*.
***Please note there will not be a meeting in August***
Featured Speaker and Topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2023 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (MDDC). www.maineddc.org Topic: Overview of the new history of website: Shadows of Pineland.
Cullen: I am pleased to welcome Nancy Cronin, Executive Director of Maine Developmental Disabilities Council (MDDC) who will be presenting an overview of the new history website: Shadows of Pineland. We have had presentations from some experts in the field providing the history of Maine’s system of care for people with ID/DD. Charlene Kinnelly and Skip MacGowan, who both have passed away, previously provided rich presentations on this history which is proudly displayed on the Coalition’s website. Nancy’s presentation today, and the coursebook she’s writing, will add to this! Thank you for being with us today, Nancy!
Nancy Cronin: Thank you for having me! The DD Council funded historical research on Pineland. I also work at Kennebec Community College and spoke with them about courses. One course this fall is an Introduction to Developmental Systems. I was asked to write a course book as part of this, a chapter of which I’ll review in this presentation. The Shadows of Pineland website is absolutely incredible. I’m going to focus on the timeline today. You’ll see a lot of themes – themes of workforce shortages, waitlists, people not being valued, etc. When you look at the history from the very beginning to today it’s fascinating and a bit of a spring – a spiral. We move forward in this kind of circular way. We have farther to go but we’re in the process of moving forward.
Begin presentation:
(Click here for Chapter 5: Poor Houses, Institutions, Eugenics, and Sterilization Laws, By Nancy Cronin, a draft chapter that will be ultimately included in a coursebook that Nancy is writing about the systems and laws that exist to support people with ID/DD. This material was referenced and used as the basis for context regarding the Shadows of Pineland presentation).
(Nancy provided a very in-depth overview of the Shadows of Pineland Timeline from the beginning through until 1961. Excerpts from the Timeline are italicized below; Nancy’s own words/explanation during the presentation are not italicized. Far more information can be found on the Timeline itself, including links to more in-depth information.)
Nancy: In the 1300s the word lunacy came to be to describe an individual who was mentally ill who had periods of time in which they fell into what society viewed as spells of their mental illness. The word idiocy also came to be used to describe an individual with an intellectual disability or physical disability. This use of language was awful. In the 15th century we got the word “insane” to describe an individual with mental illness. These are important words because we built our system on these horrible words. They carried a stigma for a very, very long time, for which there were consequences.
1850s: The Codification of Idiocy: Insanity was the view that if this group of people was treated, they could get better. Idiocy meant you could be trained. This is very different and two different systems. Why did we split these systems up? The only thing I could find is that bias from the 1700s.
1800s: Dorthea Dix: Dorthea Dix Worked to create the first mental health institutions (“mental asylums”) in the US. AMHI (Augusta Mental Health Institute, formerly the Maine Insane Hospital) and BMHI (Bangor Mental Health Institute, formerly Eastern Maine Insane Hospital) opened in Maine and filled quickly. People were sent there if people thought they could “get better”.
1880s: Rise of Institutions: There were Town Farms (Alms Houses) abuses. There were calls for a separate institution for those who were called the “feeble minded”.
1903: An Aside on Education: Compulsory education was codified into law, except for people with ID/DD.
1905: Committees Wrestle with “Feeble Minded” Problem: The Maine legislature demanded a separate home for this population. This is around the same time when society started looking at eugenics. This led to the very wrong belief that you could pass down any trait to any child. And people thought that people with ID/DD and certain physical disabilities could not “get better”. This false science led to a long history of sterilization to address this “problem”.
1908: The Maine School for the Feeble-Minded Opens: This is around the same time when orphanages were created around the country. What happened to the Town Farms that used to house orphans, the elderly, and Veterans? With the rise of other institutions for other populations, this left the elderly at the Town Farms, and as such they eventually became nursing homes.
1911: First Investigation: Only three years after opening problems were identified. However, they didn’t close Pineland, they started adding more and more beds.
1914: A Big Problem: Just six years after opening, the facility had 255 people, with a 160-person waitlist. Maine has been having waitlists since 1914 and that’s a problem.
1920s: Social Darwinism, Eugenics, and Sterilization: This led to forced hysterectomies for many women in Maine. As our technology increases and changes we need to take some time to debate and discuss as a collective community what these things mean. People make their own assumptions about genetics etc. if the conversation isn’t out there.
1931: A Second Sterilization Law: A new bill on sterilization was signed into law. This law made it easier to recommend these procedures for residents of institutions like Pineland, and coerce people with developmental disabilities, most of them women, to be sterilized.
1932: A Consolidation of Bureaucracy: There had to be a level of organization to manage the various different hospitals/institutions popping up in Maine. This led to the creation of the Department of Health and Welfare.
1933: Expansion of the School: Additional beds and buildings were added. Around this period of time is when they made it illegal to help someone who left Pineland.
1941: More Calls for Sterilization: In 1941, a bill came before the legislature to create a “State Board of Eugenics”, which would allow for involuntary sterilizations of “defectives” not residing in institutions.
1941: Furloughs for Residents: Residents were allowed to be granted the right for a temporary “leave”. Whereas residents at AMHI and BMHI were always allowed to leave.
1945: Expansion Continues: While the patient population would peak in the 1930s at around 1,500, Superintendent Kupelian would continue to advocate for expanding the numbers of residents - asking the public to support funding for up to 9,000 total patients.
1945: Educational Aside – Beginning of Special Education & the Board of Ed: People with physical disabilities started getting access to education.
1949: Vanessa’s Story – There are real people who lived there, this is not ancient history, and their stories are important. (There are various other personal stories linked on the Timeline the group is encouraged to read.)
1951: New Changes of Abuse and Neglect: It is important to note that there were some incredible, kind, caring people who worked at Pineland. Just as there were some staff who absolutely were not.
1954: The Rise of Parents Groups: At this point in time doctors would tell parents the best thing they could do is put their children into an institution and forget about them. Parents were blamed for their children’s disabilities. Being a parent and family member at this time was complicated. Many parents at this time did not forget about their children and instead stood up and fought hard. These groups and others like it would form the basis of the community care system in Maine.
1954: Parent’s Stories
1955: An Act relating to Education of Physically Handicapped or Exceptional Children: While still segregated from their non-disabled peers, this law opened up opportunities to children with developmental disabilities.
1956: Response to Abuse: The Maine Legislature, as such bodies are wont to do when faced with intractable systemic problems, on the recommendation of the Legislative Research Committee in 1955 created a Governor’s advisory committee to study the issue - the Maine Committee on Problems of the Mentally Retarded.
1957: A New Name and Visions – Pineland Hospital and Training center: Too often the “response” to a problem is simply rebranding, and that is what happened when Pineland underwent yet another name change.
1959: Bureau of Mental Health Formed: “The Bureau of Mental Health shall be responsible for the direction of the mental health programs in the institutions within the department and shall be responsible for the promotion and guidance of mental health programs within the several communities of the State.”
1961: Community Placement Calls for Larger Institution: New ideas were cropping up - it was beginning to be understood that services provided in the community were both more humane and less expensive. But even as a new infirmary to “house 134 totally dependent patients” was dedicated, Governor Reed called for more, saying, “the needs of this and other state hospitals continue to grow".
Nancy: I’ve studied institutions for years. What tends to happen is we start with public funding. But that isn’t enough. Then institutions start looking for grants. When you start shifting your money from the public to grants you have a different owner. That’s been the educational and medical model for years. When people are desperate for money things start changing.
Discussion:
Nancy: This history is so important because we need to change the way we think and change the system accordingly. It’s so important to understand why. Too often an Administration will come in and think it’s on them to make these changes etc., but this is 100s of years’ worth of problems that we all have to work to remedy.
-A self-advocate stated that for self-advocacy training they organized their training into three concepts: moral, medical, and societal. She stated that people were medically seen as broken, and they must be fixed and fit into society. Whereas the advocacy movement pivoted to illustrate that it’s not the person that is “broken” and needs to be fixed, but rather society.
Nancy: What I’m going over today is just one chapter of the textbook I’m writing. Other chapters delve into the topics of rights etc.
-A self-advocate added that whenever she and many of her friends and peers who were at Pineland hear the name “Pineland” referring to the current Pineland Farm, it’s triggering because that term is traumatic.
Nancy: Your point about this, and language in general, is such an important one. Hearing and seeing the name “Pineland” today, used in a positive way, could re-traumatizing for people. The personal stories that we saw on the Timeline are not ancient history – they are the fairly recent memories and stories of people who lived through this. Yet, it’s important that we are reminded of this history by still seeing the name Pineland. I’m going to zoom ahead to “Now” on the timeline, because there are dangers in thinking that the past was nostalgic, and just that – in the past. Because that is when the door is opened for history to repeat itself. Instead of “we should’ve done this” referring to the past, we ought to look at the history and examine how we can better move the system forward. How do we build a system in which people truly belong? We need to look at the system in a way that respects and understands the history. We’re not talking about two things: Why are we not recognizing that Pineland still exists, and their cheese and meatballs are available to buy at the grocery store? Why are we not recognizing trauma-informed care as it pertains to this?
Bonnie-Jean Brooks: This presentation was overwhelming and extremely informative. Thank you so much for this presentation. We have a lot of new agencies in Maine owned and operated by people who were very young, if they were even born yet, when Pineland closed. This is a history lesson that all providers ought to listen to.
-It was asked if Mackworth is included in the timeline/history.
Nancy: Because the Mackworth Island story has been told I didn’t include it. There’s a fascinating story about the slaves of Maine. There’s a book that talks about this young, freed, pregnant slave who was bounced back and forth from community to community because the towns didn’t want to have to take care of her unborn child. We often don’t think of slaves in Maine, but they were here.
-It was stated that this history needs to be out there for mass consumption – not just for providers but parents as well. People need to understand this history so we can prevent it from ever repeating itself.
Nancy: It’s not just the history of Pineland, it’s the history of eugenics, the history of local control, etc. Thank you very much for having me here today.
Cullen: Thank you Nancy, this was fantastic and very kind of you to so thoroughly research this and put it into perspective. I’m thrilled that you’re willing to come back this fall and finish the presentation, covering 1962 to the present. Thank you again and well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Helen Hemminger, Research and KIDS COUNT Associate, Maine Children’s Alliance. www.mekids.org Topic: 2023 Maine KIDS COUNT Data Book.
Cullen: Today we also are joined by Helen Hemminger, Research and KIDS COUNT Associate with Maine Children’s Alliance presenting on the 2023 Maine KIDS COUNT Data Book. Thank you, Helen, for being here today!
Helen Hemminger: Thank you for having me! If anyone would like a free copy of the full 2023 KIDS COUNT Data Book, please reach out to me ([email protected]).
Begin presentation (Click here for the presentation):
Discussion:
-It was asked if they hear from Boards of Education or towns.
Helen: Not really. I work with the Department of Education for data. The individual school districts have been inundated with requests for information.
Cullen: Thank you for this informative presentation, Helen. It’s great that this book is available and free for anyone who wants it. Thank you again!
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: We continue to partner with the National Disability Institute and providers who have applied for Innovation Grants to see how they’re going and look forward to looking at those outcomes and how they can inform the future of the system.
We continue working on our Lifespan Project. For up to date information on the work that is going on regarding our Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov). We’re excited about this project moving forward, and look forward to people reviewing the HCBS Lifespan Waiver Concept Paper and looking over that feedback. (Click here for the HCBS Lifespan Waiver Concept Paper – full paper; click here for the HCBS Lifespan Waiver Concept Paper Overview – Plain Language document.)
- HCBS Lifespan Waiver – Concept Paper Public Comment Sessions – Please join the Office of Aging and Disability Services (OADS) as we offer two public comment sessions on the proposed Lifespan Waiver Concept Paper. This session will allow stakeholders to submit verbal comments on the proposed waiver concept. The Concept Paper Draft is on the OADS’ Lifespan Project website. Written comments will be received through the end of day on July 28th through the following web form: https://forms.office.com/g/SV9ewiLjeg (preferred) or through the [email protected] email address.
Or - Submit comments by mail to:
Attn: Lifespan Project
Office of Aging & Disability Services
11 State House Station
41 Anthony Avenue
Augusta, ME 04333
There will be a brief high-level review of the Concept Paper. Please prepare for the session by reviewing the document before the meeting. The link below will allow you to register for the events and to receive a link to the session.
https://mainestate.zoom.us/meeting/register/tZcsd-Ggrj8iGdCRDwMM_moOfTKIyksF8EXT
If you need accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please contact Miranda Whalen at [email protected].
For updates regarding OADS’ Innovation Pilots that are underway you can go to: HCBS Innovation Pilot Grants | Department of Health and Human Services (maine.gov). We’ve put together webinars to highlight the proposals we received for the Innovation Pilots:
- DHHS OADS HCBS Innovation Grant Webinars – Summer 2023: Please join the Office of Aging and Disability Services (OADS) as we offer three webinars during the summer of 2023. The webinars will explain the 19 projects awarded to 14 provider awardees. The sessions are organized in three groupings by type of project – Technology, Employment and Training and Community Inclusion. We invite you to attend these sessions to learn about the innovative projects that have begun in Maine and will continue through December 2024. The links below will allow you to register for the events and to receive a link to the Webinar. All sessions are from 3PM to 4:30PM
July 18 – Employment and Training: https://mainestate.zoom.us/webinar/register/WN_PQB9wKBhR76JVzocIyOuKw
August 14 – Community Inclusion: https://mainestate.zoom.us/webinar/register/WN_faTPJB9jQG6J2ntfbgjegA
If you need an accommodation, such as real time transcription and captioning (CART) or American Sign Language (ASL) or other language interpretation, please contact Miranda Whalen at [email protected].
To find registration information about the Innovation Grants Webinar Series and see slides from the first presentation: https://www.maine.gov/dhhs/oads/about-us/initiatives/hcbs-innovation-pilot-grants
- OADS ID/DD Budget initiatives included in the FY 24/FY 25 budget:
- Budget invests in health and well being of Maine people | Department of Health and Human Services – blog which discusses, among other things, initial funding and authorization for the Lifespan Waiver.
- 50 New members per month will be offered Section 29 slots.
- Annualizes Previously Approved Funding for Section 21.
- Cost of Living Adjustments included for all waivers.
- Includes two new Case Management Positions that will focus on intake and eligibility.
Cullen: Thank you for this update and for being here today, Betsy!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: Our work on the Transition Project is still underway. The fourth Transition Liaison Specialist began in June. That work is moving forward which is exciting. We continue to work with OADS on the Lifespan Waiver. It’s so exciting to have work going on with transition. I also wanted to say that I am retiring on 8/11. I wanted to thank this group. I very much admire everyone here and all their advocacy!
Cullen: Thank you for being here, Teresa, and thank you for all of your work at OCFS. You have been a gift to this group and to the system as a whole, and the very embodiment of collaboration as you’ve worked to implement effective transition strategies. You will be missed greatly, and I hope you continue to attend these meetings in your new retired capacity. Thank you again and congratulations on your retirement!
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed –
Titus O’Rourke: As this group knows, we applied for and received a $750,000 grant for Regional Transition Interagency Collaborations to create a seamless system of support by region to develop regional transition councils. We’re really trying to work towards the system of seamless transition services and a continuum of support post-secondary – including people understanding what those systems are and how to access them. The Maine Transition Regional Interagency Collaborative will work to support SAUs (School Administrative Units) to develop inter-collaboratives to support the transition services kids need. We were invited to the Council of State Governments (CSG), where we met with at least 30 Senators from around the country to look at and review policy that supports youth employment. We finished that and those policy briefs. We’re also working on developing a statewide Youth Summit, which will involve bringing in all youth organizations in Maine to develop and run the summit, which is exciting.
-It was suggested that Titus provide a presentation at a future Coalition meeting on the Office of Special Services and Inclusive Education (OSSIE).
Cullen: That is a wonderful idea. I’ll be in touch to figure out which month would be best for Titus to do just that! Thank you!
SMACT (Southern Maine Advisory Council on Transition):
The last meeting of the school year was on 5/5 and featured Diane Luce with Maine Medical Center presenting on benefits counseling. This year the meetings were held quarterly – it is unknown if meetings will continue to be quarterly next year or not. The SMACT website and the Coalition website are cross-linked for convenience and broader information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy ([email protected]).
Disability Rights Maine (DRM) Update:
Lane Simsarian: DRM, with funding from the Maine Health Access Foundation, conducted a research project that identified the barriers to accessing health care for Maine people with disabilities. The full report, "I Don't Get the Care I Need": Equitable Access to Health Care for Mainers with Disabilities, is available online, as is the plain language summary (click here for more information). With the completion of this report, a medical school is interested in working with us to build better training for their students, which is very exciting. We’re also working on a presentation which we hope to present at the SUFU Conference on how to be your own health advocate. A reminder that we would love to see people come to Disability Pride on 7/21 from 11am to 3pm in Mill Park in Augusta.
Cullen: Thank you, Lane!
LD 924 Task Force Update: No Update.
Federal & Housing Updates:
Cullen:
- House FY 24 Appropriation Bills (including HUD): On 6/14, House Republican appropriators topline allocations for FY 24 spending bills. The House is proposing to cut more than $22.12 billion from the THUD bill, which funds crucial HUD rental assistance and housing programs – a cut of more than 25% from FY23-enacted levels.
- Debt ceiling & Proposed Federal Budget Cuts: Congress passed, and President Joe Biden signed into law the “Fiscal Responsibility Act,” an agreement to lift the federal debt ceiling until 2025 in exchange for capping federal spending programs at FY 23 levels in FY 24 and allowing an only 1% increase in spending in FY25. The bill also rescinds unspent COVID-19 relief funds, imposes more work requirements on Supplemental Nutrition Assistance Program (SNAP) and Temporary Assistance for Needy Families (TANF) recipients, and reallocates funding previously provided to help the IRS audit higher-income households for other purposes. Because some HUD programs require additional funding annually, the debt ceiling agreement acts as a cut to affordable housing and homelessness assistance. In FY 24 alone, HUD needs an estimated $13 billion to $16 billion in additional funding just to maintain current levels of assistance.
- S 570, Medicaid Dental Benefit Act of 2023 – Introduced by Senator Cardin, this bill requires state Medicaid programs to cover dental and oral health services for adults. It also increases the Federal Medical Assistance Percentage (i.e., federal matching rate) for such services. The Centers for Medicare & Medicaid Services (CMS) must develop oral health quality and equity measures and conduct outreach relating to such coverage. Additionally, the Medicaid and Children's Health Insurance Program (CHIP) Payment and Access Commission must report on specified information relating to adult oral health care.
- 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. The bill would:
- Increase the number of credits available to states by 50 percent for the next two years and make the temporary 12.5 percent increase secured in 2018 permanent—which has already helped build more than 59,000 additional affordable housing units nationwide.
- Stabilize financing for workforce housing projects built using private activity bonds by decreasing the amount of private activity bonds needed to secure Housing Credit funding. As a result, projects would have to carry less debt, and more projects would be eligible to receive funding.
State Legislature Update
Laura Cordes – Maine Association for Community Service Providers (MACSP) could not attend today’s meeting but sent the following update via email:
As I know you are aware, the Legislature has yet to fully finish its business! After AFA addresses the table this week, I'll update our Legislative Google Doc and note which bills were signed into law, which were funded either as part of the budget or off the Special Appropriations table, or got carried over etc.
- The Budget Change Package for FY24/25 (LD 258) was enacted in each chamber prior to adjournment.
Cullen: This Legislature had a wonderful opportunity through the creation of the Joint Select Committee on Housing to really do something in terms of funding housing development. For the first time we saw a Governor’ Budget that included funding for housing. And in addition to that a separate bill that includes funding for rural affordable housing was enacted. In total more than $65 million for affordable housing was funded this Legislative Session. I’m hoping that this housing will be inclusive of populations in need of permanent supportive housing including people with ID/DD and people experiencing homelessness.
Bill Tracking Updates: For specific information on the bills below, along with others, please see the MCHQS Bills of Interest Page:
- LD 886, An Act to Allow Clerks to Issue Absentee Ballots After the 3rd Business Day Before Election Day to Voters Who Have a Nonphysical Disability and Voters Who Support a Person with a Disability – This bill was signed by the Governor.
- LD 35, An Act to Establish Adult Protective Services Training Requirements for Professionals Mandated to Report Suspected Abuse, Neglect or Exploitation to Enhance Protection of Incapacitated and Dependent Adults – This bill was signed by the Governor.
- LD 449 An Act to Authorize the Department of Health and Human Services to License Home-based and Community-based Services for Persons with an Intellectual Disability, Autism Spectrum Disorder or a Related Condition or an Acquired Brain Injury and Define Autism Spectrum Disorder – This bill was signed by the Governor.
- LD 659, An Act to Promote Seamless and Flexible Home and Community Supports Across the Lifespan for Individuals with Intellectual and Developmental Disabilities or Autism. This bill was passed to be enacted and placed on the Special Appropriations Table pending enactment. – Included in the Enacted Budget Change Package: Funding for a new MaineCare lifespan waiver, which will offer the services currently offered under the department's rule Chapter 101: MaineCare Benefits Manual, Chapters II and III, Sections 21 and 29 and also incorporate innovations such as self-directed services, employment options and transition services
- LD 473, Resolve, to Expand the Eligibility for and Increase the Number of Applied Behavioral Analysis Services Authorized by the MaineCare Program – This bill was passed to be enacted and placed on the Special Appropriations Table pending enactment.
- LD 346, An Act to Clarify the Requirements for Family Caregivers – This bill was passed to be enacted and placed on the Special Appropriations Table pending enactment.
- LD 874, An Act to Address the Shortage of Direct Care Workers for Children with Disabilities in Maine – This bill is now dead.
- LD 744, Resolve, to Direct the Department of Health and Human Services to Perform Rate Studies and Rate Determinations for Providers of Certain Services for Adults with Intellectual Disabilities or Autism Spectrum Disorder – This bill was tabled at the 5/18 Work Session and a Carry Over was requested.
- LD 825, An Act Relating to Transportation Services for MaineCare Members with Multiple Disabilities – This bill was tabled at the 5/24 Work Session and a Carry Over was requested.
- LD 1106, An Act to Improve the Transition to Adult Services for Children with Intellectual Disabilities – This bill was signed by the Governor.
- LD 1003, An Act to Increase Access to Behavioral Health Services for Children and Individuals with Intellectual Disabilities or Autism – This bill was signed by the Governor (emergency bill).
- LD 393, Resolve, Regarding Legislative Review of Portions of Chapter 33: Rules Governing Physical Restraint and Seclusion, a Major Substantive Rule of the Department of Education – This bill was signed by the Governor (emergency bill).
- LD 948, An Act to Create a Liaison Position Between the Department of Education and the Department of Health and Human Services on Early Childhood Education Matters – The Committee issued a Divided Report – ONTP/OTP-AM.
- LD 1309, An Act to Clarify Requirements for Payment of Tuition for Children with Disabilities by the Department of Education's Child Development Services System – This bill was passed to be enacted and placed on the Special Appropriations Table pending enactment. – Included in the Enacted Budget Change Package: Allocates one-time funds for payments for specially designed instruction provided by special purpose private preschools at a rate of $125 per day, per child, for scheduled school days in accordance with a child's individualized education program
- LD 1528, Resolve, to Establish a Pilot Program and Convene a Work Group Regarding the Provision of Services by the Child Development Services System – This bill was signed by the Governor.
- LD 1466, An Act to Fund Adult Intellectual Disability and Autism Spectrum Disorder Services by Eliminating Certain Tax Funding from the Maine Clean Election Fund – This bill is now dead.
- LD 1964, An Act to Implement the Recommendations of the Commission to Develop a Paid Family and Medical Leave Benefits Program – This bill was passed to be enacted and placed on the Special Appropriations Table pending enactment. – Included in the Enacted Budget Change Package: Paid Family and Medical Leave Insurance Fund.
There are a lot of very helpful links in the Google Doc, including the Legislature’s webpage and the Testimony Submission webpage. Please feel free to add things to the Google Doc. or reach out to Laura with any questions!
Cullen: This was a very busy Legislative Session. I want to thank everyone in this group for raising their voices and telling their stories; doing so is very powerful and truly helps Legislators make good decisions for the system of care for people with ID/DD in Maine.
Cullen: I want to thank everyone for their participation today. Going back through the history of the system of care is difficult and can be triggering. These are important conversations to have, and it’s important to have them in a supportive environment. Thank you all for being so thoughtful and respectful and for providing that support. We are all better for it. Thank you for all you do!
Other Business:
- Brief informative presentation: Beyond High School: College is calling you! A look at recent changes that make a college education a real possibility.
The next meeting will be on Monday, September 11, 2023, 12-2pm, via Zoom*.
***Please note there will not be a meeting in August***
Featured Speaker and Topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2023 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].