January 2024 Minutes

January 8, 2024

Minutes

Attendees via Zoom: Annmarie Mayberry, Barrett Littlefield, Betsy Hopkins, Bonnie-Jean Brooks, Brenda Smith, Carol Snyder, Darla Chafin, Debbie Dionne, Hanna Daigle, Helen Hemminger, JC Edelberg, Jennifer-ASM, Jessi Wright, Julianne Zaharis, Kim Humphrey, Lane Simsarian, Lorraine DeFreitas, Luc Nya, LyAnn Grogan, Margaret Cardoza, Michaela York, Nancy Cronin, Robin Levesque, sbeers, Shane Ashe, Shelley Zielinski, Shelly King, Todd Goodwin, a caller who did not identify themself, 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: Part 2 of the overview of the new history of website: Shadows of Pineland.
Cullen: I am pleased to welcome back Nancy Cronin, Executive Director of Maine Developmental Disabilities Council (MDDC) who will be presenting part two of the overview of the new history website:  Shadows of Pineland, today covering 1962 to the present. As this group knows, 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 since passed away, provided rich presentations on this history which is proudly displayed on the Coalition’s website. Nancy’s presentation today, combined with her presentation in July, and the coursebook she’s writing, will add to this! Thank you for being with us again, Nancy!

Nancy Cronin: Thank you for having me! As I mentioned when I presented in July, 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 more on the timeline today, picking up where we left off in July. 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 the 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 1962 to present. Excerpts from the Timeline are italicized below; Nancy’s own words/explanation during the presentation are not italicized. More information can be found on the Timeline itself, including links to more in-depth information. More information is also in Nancy’s presentation itself, which includes items from the website and her coursebook. Some information from the timeline is included below, though it may not have explicitly been discussed in Nancy’s presentation.)

Where we left off: In the 1950s people with Developmental Disabilities were sent to Pineland. For the families who chose to keep their child with Developmental Disabilities, there was no system of community support. Today we will continue the story….
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".
1962: Kennedy’s national Action to Combat Mental Retardation: President John F. Kennedy had a personal connection to institutionalization and as President he would bring developmental disabilities into the public eye and make the re-envisioning of services for people with developmental disabilities a cornerstone of his policies.
1963: Mental Retardation and Community Mental Health Centers Construction Act – Federal Law: Congress passes the Maternal and Child Health and Mental Retardation Planning Amendments and the Mental Retardation and Community Mental Health Centers Construction Act of 1963, which would create funding for both services for children with disabilities and grants to “plan for and take other steps leading to comprehensive State and community action to combat mental retardation”.
1964: Civil Rights Act of 1964: Widely prohibited discrimination based on race, religion, gender, or nationality. It also made it illegal to discriminate for anything related to employment, voting access, public access, and education. Note: Disability is not listed here. At this point in history, it is still completely legal to discriminate based on disability.
1965: Social Securities Act of 1965: Title 19 Established Medicaid! Provided healthcare for Elderly and Low-Income Family. Provided a federal funding stream for people with disabilities: Institutional Bias Starts Here; Waivers were not a part of the program. States could either take the money to support people in institutions, or not.
1965: Staffing Problems and Failing Infrastructure: Staffing issues and high turnover was a constant refrain in the mid-1960’s in Maine’s institutional system. In 1965 it was determined that Maine’s turnover rate in this industry was twice the national average.
1966: Paul’s Story: "It was like going to a strange place. I had to get used to the place. What they did was my mother and father drove over to the building where they did the signing to let the person come to Pineland and then from there, I went to a hospital."
1967: Medicaid includes having to provide care to kids if it’s medically necessary. Medicaid essentially provides rules to states to develop their own policies.
1967: Meanwhile there are problems at Pineland: The Legislative Research Committee put out a report detailing both the staffing issues and other fundamental problems at Pineland (lack of fire protection, overcrowding, etc.). This report also showed the impacts of life in an institution on the people who lived there. Additionally, Pineland Officials admit that numerous staffers are planning to quit, leaving the future of the institution in doubt. Important note: Staff were state employees as it was a state institution.
1969: Bureau of Mental Retardation and Public Guardianship: Another “responsibility” that was granted to this new department was control over people with developmental disabilities who were determined to need guardianship, and who didn’t have family members willing or able to be guardians.
1969: More Evidence of Abuse and Neglect: A Maine Times exposé in 1969 revealed overcrowding, residents with inadequate clothing, staff shortages, and deteriorating facilities. Another exposé, in The Church World in 1972 found similar problems.
1969: Rights & Reform: Newspaper stories exposed the worst conditions in Pineland to public view.
1970: Staff Pressures and More Money for Institutions: On the ballot in 1969 was a referendum bond issue for $2.5 million in funds to “enlarge and improve” institutions, which passed by a large margin. Complaints brought by staff around pay and hours were also addressed.
1970: New Ideas, Dignity, and Fears: Change and reform were in the air at Pineland, but despite some new ideas and improvements, problems continued.
1970: Developmental Disabilities Services and Facilities Construction Amendments of 1970 – Federal Law: This Federal amendment to the 1963 Community Health Centers Act gave states the responsibility for making and implementing plans for comprehensive community services for people with disabilities.
1973: Section 504 of the Rehabilitation Act (federal): This act was the first federal law that protected the civil rights of people with disabilities, providing that people with disabilities could not be excluded from or denied participation in any program that received federal funding - including schools, healthcare, and government assistance. Changed vocational rehabilitation services to “person-centered” focus. Prior to this law people with disabilities were trained in a job … This law changed the service to train people with disabilities into a law that is centered around the person’s desires and talents.
1973: Section 504 of the Rehabilitation Act (federal) – Accessible: “No qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under” any program or activity that either received Federal funding or is conducted by any Executive Agency or the United States Postal Service.
1973: Section 504 of the Rehabilitation Act (federal): Schools: Provide a Free Appropriate Public Education (FAPE) to students in their jurisdictions with a physical or mental impairment that substantially limits one or more major life activities. Schools must provide reasonable accommodations and supports to allow the child to participate in the general curriculum and program.
1973: Section 504 of the Rehabilitation Act (federal): Employment: Must provide reasonable accommodations to allow the individual to perform a job as a person without disabilities.
1973: Yay! People were protected right? Nope. But people were done. Patient No More. For Years Disability Advocates demanded that rules should be promulgated. It resulted in the longest peaceful sit-in located in a federal building ever. If you can –look up Crip Camp –you can see the full-length feature here.
Side note: The Biden/Harris administration has proposed updated rules to Section 504 which, if enacted, will make it illegal to turn away a person for medical care because the medical provider doesn’t know about the disability. Further, it will be illegal to make decisions based on a provider’s bias about the person’s assumed quality of life.
1970s Introduced a Radical Philosophical Change: Principal of Normalization – Wolf Wolfensberger worked in DD institutions. He discussed how: To have access to what he termed as “the good things in life,” one must live a life that includes choices and opportunities that would positively impact a community; There are rhythms to lives that people who live in institutions are denied from. Wolfensberger presented the principle of normalization. This value how important it is for humans who rely on external systems to have opportunities as culturally normal as possible available to them. This really shaped the field of human services in that it stated that when service systems are being designed, they should be created to allow as many culturally normal opportunities as possible.
1970s Introduced a Radical Philosophical Change: Social Role Valorization – Wolfensberger noticed that systems of services and marginalized people. People are often forced to remain in undervalued roles that limit opportunities. The Model of Valued Social Roles transformed the field of human services. He recognized that roles bring a pathway of life which opens opportunity and allows people who are often marginalized to have access to “the good things in life.” -How could we apply today? Let’s think about Jimmy who loves to bowl and goes with his group home. Why can’t he join a league? Instead of Jimmy being the guy who goes bowling with X he can be a member of XYZ awesome bowling league.
1975: The Education for All Handicapped Children Act – Federal Law: This law finally included children with disabilities in public education in an inclusive way, mandating that all children have the right to a “free and appropriate public education” in the “least restrictive environment” possible.
1975: Developmentally Disabled Assistance and Bill of Rights Act: This law provided clearer definitions of developmental disabilities that included specific conditions and specified that the conditions originate before the age of 18 (raised to 22 in 1978), are expected to continue indefinitely, and represent a serious handicap.
1975: The Lawsuit: Pine Tree Legal Assistance, the first organization in Maine to provide free legal assistance to those in poverty, filed in federal district court in Maine on July 3, 1975 the lawsuit Wuori v. Bruns, alleging that the six defendants named in the case, and the "class" – all other residents and future residents – were not getting "training and education which would enable them so far as possible to lead normal lives."
1976: New Policy Directions: The years while the lawsuit worked its way through the courts were marked by much upheaval and many changes at Pineland. Many policies were beginning to be implemented in order to give Pineland residents more autonomy, choice, and opportunities.
1978: The Consent Decree: The state decided to settle the lawsuit, rather than go to trial. The result was a two-part consent decree that detailed the rights of persons with developmental disabilities at Pineland and in the community. The Consent Decree brought increased funding, and tremendous efforts were made to create and improve services at Pineland and in the Community. Residential units at Pineland became smaller and more home-like, with ‘apartments’ of 4-6 people and only 1 or 2 people in a bedroom. Programs and activities were expanded including regular trips off the grounds.
1980s: Oversight and Protecting Rights: Neville Woodruff, the lawyer who represented Pineland residents in the lawsuit, threatened new suits against Pineland saying, “They are very far behind in three major areas - staffing, quality of programs, and staff training.” Court Master Gregory was critical of the lack of improvements at Pineland as well, saying residents were “still just being kept. Life for them is purposeless."
1980: Task Force on Long Term Care: Governor Brennan appointed a “Task Force on Long Term Care for Adults” to study the systems of long-term care as they stood and bring back policy recommendations to the administration.
1980: Marriage Statutes Revised: The new law gave a bit more freedom for marriage, but still denied anyone “impaired by reason of mental illness or mental retardation to the extent that he lacks sufficient understanding or capacity to make...responsible decisions” the right to marriage.
1981: Omnibus Budget Reconciliation Act 1981 (OBRA 81): Created the Waiver Program – (we spoke before about how people sign away their right to an institution. The original Medicaid law wasn’t amended –only through budget processes –ways to work around it were incorporated.). Created the F-Map. This Changed Everything!
1981: Katie Beckett: President Reagan created a Medicaid option that allowed children with special health care needs that required institutional level of care could receive that care in the community through Medicaid dollars. As long as it cost less than an institution. This is an Option that States can choose to offer or not. It is not a waiver, but like one in many ways.
1981: Law Requiring Home-based Care: The Legislature passed a law into statute requiring the Department of Human Services to provide in-home and community support services for adults with long-term care needs.
1981: Act to Create a Department of Corrections: This law broke the Department of Mental Health and Corrections into two separate agencies.
1982: Maine Hops onto the Waiver Options: Maine sought Medicaid funds for foster homes. This was the beginning of the Section 21 Waiver.
1983: Consumer Advisory Board (precursor to the Maine Developmental Services Oversight and Advisory Board) was created.
1983: Standards Met! ...? In 1981 the Court Master declared that Pineland had met the standards of the Consent Decree, and Pineland became the first institution in the country to be released from court supervision. In 1983 the court ended its supervision of community services. While the court’s jurisdiction ended, the standards of the decree had become incorporated into the services and systems at Pineland and in the community.
1980s: Beginnings of Community Care: With public and policy sentiment turning towards the idea that people with developmental disabilities deserved the right to care in their communities and a full life with control over their choices, a new system needed to be built from the ground up.
1990: New Problems and The Closing of Pineland: Despite all the systems in place to ensure compliance, problems arose. New criticisms of inadequate funding, staff shortages, not enough community options, lack of proper oversight of persons moved into the community, and other non-compliance led to another lawsuit. In the meantime, the state had decided to close Pineland.
1990: Educational Aside – The Individuals with Disabilities Education Act: The IDEA law of 1990 built upon the Education for All Handicapped Children Act of 1975 - further enshrining the main elements of an inclusive education. Replaced the EHA and changed the focus from what a student would be able to do after they left school to a focus on the individualized education that the child would need to benefit from their education. This attention to education, as opposed to basic employment, was aiming to ensure that a student’s educational needs were met, and the student progressed in their education as close to their peers who did not have disability as possible.
1990: Americans with Disabilities Act (federal): Furthering the gains of the 1973 Rehabilitation Act, the ADA protects people with disabilities from discrimination not just from the government, but from employers and businesses that provide public accommodations. Not just Access –Civil Rights! Judith Heumann called this bill the “People with disabilities Emancipation Proclamation”. This bill required civil rights for people with developmental disabilities, making it illegal to discriminate on the basis of disabilities.
1992: Decline and Closing: Admissions to Pineland became fewer and for shorter periods of time. The 207 residents in 1992 rapidly dwindled to 76 by 1993. The success of community services, the small number of residents, and the great cost of maintenance for an aging facility prompted the decision for closure. In May of 1996, the last resident of the center left and in June of that year ceremonies were held to mark the official closing of the institution that had been known at different times as the Maine State School for the Feebleminded, Pineland State School, Pineland Hospital and Training Center, and finally Pineland Center.
1993: Paige Barton and the Creation of SUFU: Paige Barton spent 15 years in an Ohio institution before proving her self-sufficiency. She became a leader of self-advocates in Maine, eventually forming the advocacy group Speaking Up for Us (SUFU).
1994: The Community Consent Decree: In the early 1990s the Consumer Advisory Board, which had been created to monitor compliance with the Pineland Consent Decree, initiated a new lawsuit asserting that Maine’s mental retardation services fell short of the standards of the original decree. In 1994 a new agreement, known as the community consent decree, was signed in the Federal Court, setting new standards. The new decree took no position on the closing of Pineland, yet the declining population of the center, growing anti-institution sentiment and the rising costs of maintaining the aging facility had a large influence. Many employees, family members and others protested the idea of community placement, citing long-standing personal ties and the stability of the institution. However, the community service system had continued to grow and serve people with significant and multiple disabilities, as well as those with seriously challenging behavior.
1996: Into the Community: The transition from institutional to community living and care was not easy for many Pineland residents, nor was it easy for those setting up and trying to operate housing and various services.
1996: May 31, 1996, Pineland closes.
1999: Olmstead vs LC (federal): While Maine was working to build a system of care for people with developmental disabilities outside of institutions, a legal case before the Supreme Court finally codified the idea that people with developmental disabilities had the right to life in the community. -The story begins with Lois Curtis and Elaine Wilson. Both of these women were institutionalized. They were placed in the institution when they were younger and could not leave, even though many recognized that they COULD live in the community. They sued under the ADA that they were being forced to remain in the institution unnecessarily. This case went all the way to the Supreme Court and in 1999 the Olmstead Decision was made that people with disabilities have the right to live in the least restrictive setting. Lois Curtis and Elaine Wilson were able to move out into the community, into their own home with support.
2000s: New System, Old Problems: Despite a growing understanding that community-based services were a better choice for individuals than institutionalization, switching from a consolidated and hierarchical system to one of many service providers helping smaller numbers of clients follow personalized plans for success was difficult, and the path forward had many hurdles to overcome.
2003: A Roadmap for Change: In February of 2000, in response to the federal Olmstead decision requiring services for people with developmental disabilities in the least restrictive environment possible, the Commissioner of the Department of Human Services created the Workgroup for Community-Based Living.
2003: Maine Responds: The resulting report, published in October of 2003, identified issues within the systems of care, established core values with which to approach service provision, and named three top priorities: Services, Workforce, and Service Coordination. The Workgroup expressed a vision by and for people with disabilities that still resonates to this day, including in their report items like, “Honoring individual dignity means listening to and respecting each person’s dreams and aspirations and respecting each person’s right to make choices” and “Services must be accessible, affordable, and available. They should be flexible enough to meet the changing needs of each individual as their needs change”.
2004: Establishment of the Department of Health & Human Services: In an attempt to consolidate and eliminate bureaucracy, in 2003 a bill was proposed at the Legislature to merge the Department of Human Services and the Department of Behavioral and Developmental Services (formerly the Department of Mental Retardation) into one department: the Department of Health and Human Services.
2010s: Smaller Budgets and Bigger Waitlists: The second decade of the 21st century ushered in big changes to state government. An economic downturn and a new administration ushered in alongside others in an austerity-based, small government movement led to budget cuts and staffing freezes at the Department of Human Services. Over this decade, waitlists for services exploded, especially for Section 21 services, which serve those who need daily support to live full lives.
A few themes throughout history and beyond: Workforce crisis, money, studies instead of action, and waitlists.
Now: Will History Repeat Itself? Must we repeat history, or can we find new solutions? If we don’t know our history, we will think the old is new. The impulse toward institutions continues as some community-based facilities for developmentally disabled persons grow in size and the people they serve become less integrated in everyday community life and less in control of their own lives.

Nancy: Thank you for giving me this opportunity to speak. Feel free to contact me any time! (Email: [email protected].)
Cullen: This was great; thank you very much for putting this together and walking us through this important history!

Discussion:
-It was stated that one of the terms being thrown around now is dignity of risk. It was asked if this was a term found in Nancy’s research or if it’s legally documented anywhere.
Nancy: Dignity of risk has been around for a very long time. That conversation started in the 1960’s. What is the dignity of risk? Isn’t there risk everywhere? Isn’t part of being a human being experiencing risk? There has been a continual tension between people’s right to risk and the system’s need to stay away from lawsuits. So where is the liability in that? There are other tensions that are very important, for instance what kind of information do people need to know when deciding upon risks? When do other people need to back off and allow those risks to happen? The idea of dignity of risk is not a new concept. These are debates that haven’t been fully fleshed out yet. These debates really should be dusted off regularly and discussed – with systems, lawyers, people with disabilities, etc. and determine how we’re going to figure that out ourselves.

-A parent thanked Nancy for her thorough and fair presentation. She stated that dignity of risk is still being pushed in plans etc. She added that prior to Pineland closing what was happening in other states was very scary, so at the time Pineland closing was a scary thought. It’s hard to see growth currently. Workforce issues remain. The lack of placements for people currently is terrifying for parents. The reason we aren’t making more progress is that people have no understanding of the struggle people are going through – what they’re doing to try to be successful in community inclusion and making connections.

Bonnie-Jean Brooks: Thank you! This was just a wonderful presentation. I have the button and hat we were given at the Pineland closing celebration. The Volunteer Correspondent Program (VCP) is still alive. As the Interim Executive Director of the Maine Developmental Services Oversight and Advisory Board (MDSOAB), I’m working on the VCP including considering changes to make it a better program. I also wanted to mention that in the early days, around 1979, there was a fairly landmark lawsuit (the Brimmer case) filed by neighbors in Brewer of a house attempting to be licensed. This was a zoning case. Kevin Concannon was the Commissioner at that time and essentially said we’ll fix this. It went to the State Supreme Court; the neighbors won that case. Kevin essentially had the last word in that the Legislature passed a zoning bill so that could not happen again. This was around the same time the nation was discussing these same issues. This was when the Federal Fair Housing Act was passed. This was huge as we were working to get people into the community.
Nancy: I’m going to look up that zoning case – that sounds like another chapter. Thank you!

-A self-advocate thanked Nancy for her presentation. She stated that this history brings up a lot of deep emotions. It is very hard, but it’s very important. These laws being changed allow people to feel like they belong in the world and have a right to their life.  Christmas in Purgatory is ought to be broadly read so history doesn’t repeat itself. She stated that education laws changing is what allowed her to attend college. She added that she does not like the word “day program”. Language is important and this doesn’t normalize people with disabilities getting out into the community.
-A parent stated that it’s human nature to take the path of least resistance. Getting over the barriers of stigma and fear is a challenge for everyone. Challenge requires effort and effort is not the path of least resistance. There’s always an opportunity to challenge oneself, even people familiar with disabilities, to move the needle in a positive direction.
-A parent stated that she often thinks about living options as she ages. Living options for an older person seem to be independent living, assisted living, and memory care. For people with disabilities, it’s common when they age to experience dementia. When she considers her daughter and her lifespan she wonders if the “normal” aging options will be there for people with disabilities. She stated she would like to see the typical aging options for her daughter with disabilities as well. She worries that the ADA may interfere with this.
Nancy: Every five years the DD Council conducts a five-year state plan. Part of this is looking at what the state of the State is. We decided to look at it from a developmental lens. What are people without disabilities doing and what’s preventing people with disabilities from doing the same thing? It’s very important that throughout people’s lives they have similar opportunities to live. When we split from Pineland, many split from the medical model altogether, moving towards the social model. What happened is we broke away from our doctors in some ways and they then weren’t educated about people with ID/DD. That results in people with ID/DD not receiving the same medical care as others, dying earlier from things that other people don’t die from. A lot of our advocacy is around healthcare. People with disabilities are living longer. They need colonoscopies and mammograms just like everyone else. They need to have the same opportunities. We need to continue so many conversations. The conversation has to be had around how we support people when they get older. When does the aging system take over? I don’t have the answers but it’s important we ask the questions.
Betsy Hopkins: I did a presentation for Autism Society of Maine on this exact topic. There were several slides that speak to supporting people to age well in their communities as they want to and make decisions with their team around that. (Click here for the presentation that Betsy referenced, this topic begins on slide 10).
-A self-advocate stated that aging in place, and having the variety of medical accommodations, trainings, and services for the individual needs to be discussed. She stated she’s not sure if research has ever been done on this for people with disabilities. She stated that we keep moving people with disabilities from house to house to house; this wouldn’t happen for a 50-year-old without disabilities.
Betsy: Thank you for your comments – and I completely agree with you. The PowerPoint addresses that and the goals of the lifespan waiver. And the rate study will hopefully provide a better rate method to account for the evolving needs of people as they age. We’re hoping to have tiers of support to address the variety of needs people have throughout their lifespan.

-It was stated that there’s a lot of segregation happening before people enter Kindergarten through special purpose preschool. This then sets the stage for more segregation when they’re in K-12.
Nancy: Last Friday the Commissioner of Education spoke to the Education Committee about working to integrate this into the school system. If we move three- and four-year-olds into the school district, I sure hope we’re going to ensure children without disabilities will be there too. Children with disabilities have legal requirements for services, whereas children without disabilities do not. As such we’ve moved forward with more segregated settings as opposed to inclusive education environments.

Cullen: Thank you very much, Nancy, this was fantastic and very kind of you to so thoroughly research this and put it into perspective. We need to treasure this history and work to understand it, as we’re apt to repeat it if we don’t understand it when we can instead keep evolving. Thank you again and 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:
-New Resources are now available from the Office of Aging and Disability Services (OADS) Youth Transition Team:  The Youth Transition Team is happy to announce the rollout of the Department of Health and Human Services (DHHS) Transition Planning webpage. The webpage highlights important information regarding transition and includes a printable timeline that can be used as a guide during youth transition planning.

The Youth Transition Team was created as a pilot project supported by the Office of Child and Family Services (OCFS) and Office of Aging and Disability Services (OADS) to improve the transition process for youth with intellectual and developmental disabilities (IDD), autism spectrum disorder (ASD), and other related conditions (ORC). The goal of this project is to provide training, quality oversight, and resources that offer more consistent approaches to supporting youth with IDD, ASD, and other related conditions as they transition from the OCFS children’s system to the OADS adult system. The Youth Transition Team has been working to develop and provide information and resources for cross-training school personnel and community case managers to provide person-centered support to youth as they seamlessly transition to adulthood. Reporting will allow the team to identify the greatest transition training and support needs.

This work could not be done without the ongoing partnership of other transition leaders in Maine from the Department of Education (DOE), Division of Vocational Rehabilitation (DVR), along with several youth leaders and family stakeholders. Interagency collaboration is critical for the successful transition of the individuals we serve, and the OADS Youth Transition Team has been busy building internal and external connections with DHHS. If you are working with transition-aged youth who may be eligible for OADS services, and have yet to connect with us, we encourage you to reach out and introduce yourself to the OADS Transition Liaisons and let them know if you need transition information or resources. The more we connect in our communities and gain stakeholder input, the better we can find new resources and support, which can improve the overall person-centered planning process.

To connect with a Transition Liaison in your area, you can email [email protected]
The Federal American Rescue Plan Act funds this initiative under Section 9817.

-Provider Lifespan Readiness Grants:  In preparation for the new Lifespan Waiver, OADS is working with providers to offer “Provider Readiness Grants” using American Rescue Plan Act funds under Section 9817 to help providers be ready to provide many new services in the waiver. OADS is meeting with a provider stakeholder group to provide input on a provider survey, which will inform the grant process and offer providers options to apply for the grants by late spring 2024.

-Lifespan Waiver update for DHHS Committee:  OADS is providing a Lifespan Waiver update before the Health and Human Services Committee on Wednesday, January 10th at 1:00 pm. You can attend this meeting in person or by listening in at: https://legislature.maine.gov//Audio.

-A New Rate Study for Providers is Underway: In September 2023, the Department initiated a rate determination process for Sections 18, 20, 21 and 29, and a newly proposed Lifespan program for individuals with intellectual and developmental disabilities (I/DD). The Department with its vendor Burns & Associates, a division of Health Management Associates (HMA-Burns), then held a public kickoff meeting with interested stakeholders where we introduced the project team and reviewed the goals, process, and timeline for this work.  Survey: As part of the rate study, HMA-Burns is administering a provider survey to gather data regarding current service delivery models and expenses. The project team and vendor collaborated with a Provider Stakeholder Advisory group to review a draft of the survey and incorporated suggestions from this group before finalizing the instrument. The survey tool was released on December 15, 2023.  Data collected through this process will be a key element in developing recommendations related to payment rates for services covered under Sections 18, 20, 21, and 29, as well as for services to be delivered through the new Lifespan program. Completed surveys are due by February 7, 2024, at 5:00 PM Eastern time. All information gathered through the survey will be treated as confidential and used only for the rate study. Only aggregated data will be reported; no provider-specific information will be shared or published.

DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs - No update

DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update

Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed  - No update

Disability Rights Maine (DRM) Update:
Barrett Littlefield:  We are expecting to release our Voting Access Report in the near future, summarizing our work on voting access. We continue to do a lot around youth advocacy (ages 14 to 25). DRM has a new Youth Self-Advocacy Project – and we
We are hosting a Youth Self-Advocacy Group. It is for 14 to 25-year-olds with intellectual/developmental disabilities. In this group, the aim is to have fun together, make friends, and learn skills for speaking up. We continue to have weekly Youth Self-Advocate Virtual Info Sessions that anyone can join on Wednesdays at 10:30am.
Lane Simsarian: Homebound vaccines are available to anyone unable to leave their homes, meaning transportation, mobility issues, and so on.   Both Flu and updated COVID-19 vaccines are available. All we need is your name, address, and phone number and DRM can send a referral for you to get a provider in your home to get vaccinated. Reach out to Lane at [email protected] or 207-626-2774 x263.

Cullen: Thank you both for being here!

LD 924 Task Force Update:  - No update

Federal & Housing Updates:
Cullen:

Tax Extenders – Congressional leaders were working quickly to reach a bipartisan agreement before the end of the year to expand the Child Tax Credit and revive several expired business tax incentives. It is unclear what if any tax extenders passed. If a deal is reached in early 2024, the tax package could include resources to expand and reform the Low-Income Housing Tax Credit (LIHTC). Advocates are working to ensure that any new LIHTC resources included in a tax package serve the millions of households experiencing or at risk of homelessness. Members of Congress, including Congresswoman Chellie Pingree have urged House leadership to include S 1557/ HR 3238, the Affordable Housing Credit Improvement Act in a Tax Bill (see below for info on the bill). The bill would expand the LIHTC and have very strong bipartisan support.
FY 24 Budget – Congressional leaders reached an agreement on a topline funding number for FY 24 appropriations over the weekend, after months of being in a stalemate. The agreement reached between Senate Majority Leader Chuck Schumer (D-NY), Senate Minority Leader Mitch McConnell (R-KY), House Speaker Mike Johnson (R-LA), and House Minority Leader Hakeem Jeffries (D-NY) largely mirrors the agreement reached between former House Speaker Kevin McCarthy (R-CA) and President Joe Biden and funds domestic programs at $772.7 billion – a 0.2% increase over FY23, plus $69 billion in additional funding through a side agreement. The current Continuing Resolutions (CRs) funding veteran’s programs, transportation, housing, agriculture, and energy through 1/19/24. Based on new data from HUD, it’s estimated that the Housing Choice Voucher funding level in the House appropriations bill would cause about 112,000 fewer households to receive help in 2024, and the Senate bill would mean 80,000 fewer families are served. These cuts are substantially deeper than originally estimated based on the data previously available. Even though both bills include increased funding for housing vouchers compared to 2023, neither provides enough to cover higher costs as the program continues to catch up with steep rent increases.
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 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.
S 1557/ HR 3238 The Affordable Housing Credit Improvement Act – Senator Angus King cosponsored bipartisan legislation to create nearly two million new affordable homes across the country – including thousands in Maine. The Affordable Housing Credit Improvement Act would expand the Low-Income Housing Tax Credit (LIHTC) to provide more homes for low-income people, support small businesses trying to attract workers, and fill the state’s gap of more than 20,000 affordable housing units. It appears this bill has strong bipartisan support, increasing its likelihood for passage.

State Legislature Update –
Cullen: Thank you all for your collective advocacy educating Legislators about what you’re encountering, offering your expertise, and helping them understand the needs of people with ID/DD, so that they can make good decisions. Sharing your personal stories is very effective, and we’re all better for it. Thank you for raising your voice; I hope you continue to do so throughout 2024! I suspect this will be yet another busy legislative session, where you will be called upon to tell your stories. Please be on the lookout for action alerts for opportunities to do so. This Coalition strives to be an informational clearinghouse, and a vehicle for collective grassroots advocacy – striving to make the world a better place for people with disabilities, a world in which they can truly live, be included in their communities, and they can launch and thrive. Telling our stories, sharing information such as the history included in Nancy’s presentation, is essential to ensure we move the needle forward, and so history doesn’t repeat itself.

There are a number of carry-over bills that will be considered in the Second Session of the 131st Legislature. Many of these have already had public hearings and as such will not receive additional public hearings. Emergency bills up for consideration were reviewed by the Legislative Council (the list of all accepted requests by the Legislative Council can be found here).

From previous meetings: Laura Cordes – Maine Association for Community Service Providers (MACSP): Over the past few years, I’ve built a Google doc to support the MCHQS' interest in monitoring and engaging in bills of interest in the 131st Legislature. The doc contains an updated list of bills of interest, links on how to testify in person, by zoom, and/or how to submit testimony, as well as a list of Committee members (click here for more information). The Second Session is the “Short Session” and only emergency bills, Governor’s bills, and bills carried over from the previous session will be heard.

LD 2009, An Act to Prevent Abandonment of Children and Adults with Disabilities in Hospitals: This bill requires a hospital to discharge a minor or an adult with a disability who is under guardianship to the care of a parent or guardian no later than 48 hours after the attending physician has determined the minor or the adult with disabilities is safe for discharge, and if a parent or guardian does not take custody of the discharged minor or the discharged adult with a disability within that period, the hospital is required to notify child protective services or adult protective services, as appropriate, which must then take custody of the minor or the adult with a disability. This bill was carried over from the last session, and though it already had a Public Hearing and Work Session last session, it has been scheduled for an additional Public Hearing: Tuesday, 1/16/2024, 1:01pm, HHS Committee.

Other Business:

From the Arc: Lets remind Congress to keep fighting for people with disabilities and their families. Take action today!

The next meeting will be on Monday, February 12, 2024, 12-2pm, via Zoom*.

Featured Speakers and Topic TBD.

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].