July 14, 2025
Minutes
Minutes
Attendees via Zoom: Bonnie-Jean Brooks, Laura Cordes, Betsy Hopkins, Brenda Smith, Carol Snyder, Darla Chafin, David Cowing, Debbie Dionne, Elizabeth Burgess, Jamie Whitehouse, Julianne Zaharis, Kim Humphrey, Lily Lin, Lisa Wesel, Lorraine DeFreitas, Lucas Cuellar, Margaret Cardoza, Melissa Bliss, Paula Bush, Rachel Dyer, Rebecca McBride, Sara Fleurant, Shelley Zielinski, Shelly King, Wendi O’Donovan, Cullen Ryan, Vickey Merrill, and possibly a few people who joined after the meeting began and left prior to the conclusion of the meeting.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: 2025 MDSOAB Annual Forum Part 2.
Cullen: Each year the MDSOAB holds community forum(s) to pull people familiar with and/or receiving services together to provide input on how well services are working, how they might be improved, and to provide general feedback. Today we are joined by Bonnie Jean Brooks, Executive Director of the MDSOAB to do just that. This forum is designed to start a dialogue. This is one of the primary reasons this Coalition exists – to disseminate information, solicit feedback, and work to optimize the system of care for people with intellectual/developmental disabilities (ID/DD) in Maine. This meeting will feature Part 2 of the Annual Forum (Part 1 occurred at the 6/9 meeting). All feedback will be anonymous so please feel free to be very candid.
We want you all have Bonnie’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well. She will continue to welcome it as she puts a report together. Thank you for being here again today Bonnie!
Bonnie-Jean Brooks: Thank you so much for having me! A few updates from the MDSOAB: MACSP (Maine Association for Community Service Providers) held its Annual Conference recently. Victoria LaBelle from the MDSOAB attended and met with 66 different people during the conference documenting their thoughts and feedback similar to these forums. We received some wonderful information from case managers, direct support professionals (DSPs), and others. I’m very excited to add that there are six (6) agencies in Maine that have stepped forward and are willing to provide conference room space so that we can listen to what people being supported have to say about their services.
As a reminder, the role of the MDSOAB is described in state statute Title 34-B in Chapter 1. In order to carry out its oversight and advisory functions, the board has several powers and duties. One of our roles is “to hold at least one hearing or other forum each year that is open to the public in order to gather information about the availability, accessibility and quality of services available to persons with intellectual disabilities or autism and their families.” The MDSOAB is responsible for overseeing and advising the Maine Department of Health and Human Services (DHHS) and other relevant state departments about challenges, issues, and successes in the system of care for adults with intellectual and developmental disabilities (IDD) and autism spectrum disorder (ASD) in Maine. The MDSOAB advises the state and makes recommendations for improvement. Each year the MDSOAB spends time listening to Mainers as they share their thoughts, insights, and recommendations about the current system of care.
The OAB has a positive working relationship with our state partners and others. We hope to strengthen our collective systems of support by working together. We will listen to your feedback and share it with those partners.
This year we held a 1-hour Forums at the June 9th meeting of the Maine Coalition for Housing and Quality Services, with the second part occurring today. We covered broad questions in June and today, we will be diving into more specific areas. We will also be pleased to accept written comments ([email protected]).
MDSOAB Forum Part 1, June 9th: Please note that responses from Forum Part 1 are being repeated here; they were distributed in the June minutes. Part 2 of the Forum begins further down and is marked clearly as Part 2 in bold.
Please respond to the following prompts concerning the performance of the provider community and ANY state agency in the past year and share your goals and priorities for the future. Direct responses from the group are italicized below.
1. What things have gone well and deserve our acknowledgement?
MDSOAB Forum Part 2, July 14th: Please comment on your successes, experiences, and concerns about the following (direct responses from the group are italicized below):
Advocacy: -I receive calls from neighbors, because they know I’m involved in the disability community, with concerns about people in group homes burning fires too close to the home, setting tires on fire, police interventions, etc. This could be indicative of a lack of support/supervision for people in the home. However, a new type of advocacy for neighbors, town councils, etc. would be helpful. Police often don’t know who the providers are for the home. This advocacy/education could help reduce police interventions and improve the dignity of people with disabilities. People ought to be able to live in their homes. I’ve heard of Town Councils wanting to have group homes identified, and identified as businesses, due to town/neighbor complaints and trying to get them out of the neighborhood. All agencies are businesses and must comply with all local and state laws. Homes supporting people with disabilities are covered by the Federal Fair Housing Act.
-My neighborhood has been an advocate for my daughter – when neighbors have seen situations that could be considered dangerous, they’ve reported it to me which has been helpful.
-Through my experiences with my 38-year-old daughter who lives with me one of my biggest concerns is self-advocacy. Case management and her day program staff have listened to her and as a result she’s been able to get her own home supports. Truly listening and encouragement foster self-advocacy and is a huge part of advocating for people with disabilities.
-I have a 29-year-old son who had a significant event in January. He was fully staffed and his staff ended up calling the police and the situation got out of hand. Fortunately, my husband was able to go and help with communication. The good that came out of it is that we were transitioning to a new agency and we developed a profile for my son – what strategies worked well, what his triggers are, etc. The agency met with the Police Department and gave them an update on my son. The community got to know my son more and have updated information to help in situations that may arise.
-Family advocacy is key. Advocacy is usually going to be greater than what self-advocates can manage. How do we facilitate assistance with that? And how do we intercede when we see the help that they require might be greater than their capacity?
Behavioral Supports: -Often times people (especially people who are nonverbal) use behavior as a form of advocating for themselves.
Case Management: -Case Managers are good, but they can only see the individual one time a month for an hour or less.
Communication/Collaboration: -My son gets remote speech and social work services. The remote option is really important for him and his communication abilities/preferences. Can the upcoming forums for people accessing services be accessed remotely? This would assist more people to participate, self-advocate, and share their voice.
-Parents are often the glue that holds everything together currently. With aging parents, what will happen when we’re not here to assist with this?
-Innovation grants pertaining to communication have been wonderful. I’ve seen such a transformation in my son.
Dental Services: - Access to dental services remains problematic.
Other Professional Services: -Access to speech, OT, and psychiatric services remains problematic.
-Having high schools offer sign language in their language programs would raise the visibility of disability and also the support at the same time.
Person-Centered Planning: -The PCP document itself is 15+ pages. It’s very hard for even a very well-informed, well-educated parent to read it. Things get put in that you can’t take out. There’s a lot on the to-do list, but to update this document so it’s more effective and easier to work with would make a huge difference.
-The amount of time and effort that went into IEPs to make them legally compliant, but also not have it be the be-all, end-all for what we were doing was a challenging balancing act. Having all these systems and processes be easy to navigate is essential.
Transportation: No comments provided.
Other:
Innovation Grants: -The innovation grants have been fantastic in terms of trying to address some of the issues in the system that have been identified for years. I’ve seen such a transformation in my son. My son asked for a birthday party – he’s never asked for this before, and it was amazing. We’ve identified all these gaps and then you see these efforts and changes going on and it underscores how much more could have been done all along. It highlights how much people can do when provided the opportunity and support to do so.
Shared Living: -Many shared living providers are parents, and looking around at some of the participants here, including myself, we are not getting younger. What happens to our adult children when we’re not around anymore?
Unmet Needs: -Parents/families are often times filling unmet needs. Without the support that parents provide, people will regress and lose a lot of support. What happens when parents/family members are not in the picture anymore? For example, dialectical behavior therapy (DBT) has been extremely helpful for my daughter, but I had to go out and find it privately because it’s not commonly offered as a service. This has helped with setting realistic goals for behaviors. It’s helped with understanding where behaviors are coming from and how they express her needs – versus trying to change her behaviors.
Training: -Trauma-informed care training for professionals that care for/support people with disabilities is important. Working with local colleges and universities would be helpful.
Cullen: I want to thank everyone for sharing their heartfelt comments, and Bonnie for collecting this feedback in June and at today’s meeting. As always, we will be sure that all of the feedback provided today is incorporated into the minutes and given to her for the MDSOAB. This is not the end of the discussion! I would encourage people to keep thinking about this so we can include comments in the final report. If people have additional comments on how things are working and how things could be improved, please email Bonnie ([email protected]). Thank you, Bonnie, for being here today!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP). meacsp.org Topic: Wrap up of the First Session of the 132nd Legislature.
Cullen: I am pleased to welcome Laura Cordes, Executive Director of MACSP, who will be providing a wrap up of the First Session of the 132nd Legislature, including the enacted Biennial and Supplemental Budgets and what bills were enacted pertaining to the continuum of care for people with intellectual/developmental disabilities. Thank you for being here, Laura!
Laura Cordes: Thank you for having me! The Maine Association for Community Service Providers (MACSP) is an association of organizations that provide support and services to children and adults with intellectual disabilities, Autism and Brain Injuries in Maine. MACSP members support a workforce of about 9,000 direct support professionals or direct service professionals in a variety of roles, supporting about 5,000 adults with intellectual disabilities, autism spectrum disorder, or brain injuries.
As this group knows, I created the MCHQS 132nd Maine Legislature First Regular Session 2025 Resource Document, to support the MCHQS' interest in monitoring and engaging in bills of interest. The doc contains an updated list of bills of interest, which I’ll be reviewing in detail. (For more information, please refer to the Google Doc.).
Begin Presentation (Click here for the PDF version of the Google Doc that Laura reviewed in detail.)
The Legislature adjourned Sine Die on 6/25. There are a whole host of bills that either didn’t move through the House and Senate for votes for enactment or didn’t get funded off the Table. The vast majority of these bills were carried over into the next Legislative Session. Some bills passed and were sent to the Governor; however, she did not sign many of these bills into law. Since the Legislature has adjourned Sine Die, she’s essentially “holding” these bills until the Legislature comes back into session.
LD 609 “Continued Operations Biennial Budget”: The Legislature passed a simple “continued operations” budget to ensure that funding went into effect by the start of the State Fiscal Year (7/1/25) since they were unable to pass a Budget with a majority necessary to enact the Budget as an emergency bill.
Current Status: Signed by the Governor. Will take effect: June 20, 2025.
Includes: The baseline budget for each existing program and a subset of initiatives and language parts contained in the Governor’s Biennial Budget proposal. This bill, as enacted, does include one-time funding for MaineCare Cost-of-Living Adjustments (COLAs) for 7/1/25.
LD 210 Biennial Budget: This is the original Biennial Budget bill that turned into the Supplemental Budget for fiscal years 25, 26, and 27. The Legislature included partial cost-of-living adjustment increases (1.95% COLA) for direct care services for 7/1/25.
Current Status: The bill has been signed by the Governor. Click here for the Enacted Chapter Law.
Includes:
Special Appropriations Table: June 2025 – $7.2 million for 116/292 bills that were awaiting funding.
Bills of Interest:
The bills listed below are not a comprehensive list. Please see the Google Doc for the full list of bills and/or the PDF version.
LD 21 An Act to Update the Provision of Law Concerning Student Codes of Conduct in Order to Reflect Best Practices Regarding Behavioral Threat Assessment and Response.
Summary: This bill amends the provision of law governing a school board's adoption of a student code of conduct to require the establishment of policies and procedures for students who may pose a threat of violence in order to reflect best practices regarding behavioral threat assessment and response.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 51 An Act To Increase Oversight Of Fatalities of And Serious Injuries To Adults Subject To Public Guardianship.
Summary: Under current law, the Aging and Disability Mortality Review Panel reviews deaths of and serious injuries to adults receiving services in home-based and community-based services programs, including participants in those programs who are subject to public guardianship. This bill expands the charge of the panel to review all deaths of and serious injuries to adults subject to public guardianship, whether or not they are enrolled in home based and community-based services programs. It also amends the membership of the panel.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 768 An Act to Update the Laws Governing the Licensing of Intermediate Care Facilities for Persons with Intellectual Disabilities.
Summary: This bill updates the provision of law governing the licensing of intermediate care facilities for individuals with intellectual disabilities, or ICF/IIDs, to establish specific licensing requirements in statute. Under current law, there are no licensing standards for these facilities, only authority for the Department of Health and Human Services to adopt rules governing licensing standards. The bill both codifies existing department rules governing the licensing of ICF/IIDs and updates these licensing standards to align with similar licensing laws. The bill updates related statutory language and a headnote. The bill also amends the provision of law governing the reporting of sentinel events at health care facilities by removing ICF/IIDs from the list of health care facilities that are required to make reports to the department under this provision.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 769 An Act Regarding Access to Behavioral Health Supports for Adults with Certain Disabilities.
Summary: This bill amends the law governing access to behavioral health support for adults with an intellectual disability or autism.
The adopted Amendment made the following changes:
1. It clarifies that blocking and redirection are not considered restraints and are not prohibited from inclusion in a modifying behavioral health support plan.
2. It clarifies that the Department of Health and Human Services may use either a licensed clinical social worker or a psychologist to review behavioral health support plans.
3. It adds members to the support and safety committee and requires the department to provide deidentified copies of behavioral health support plans to the committee.
4. It clarifies the distinctions between positive behavioral health support plans, modifying behavioral health support plans and the use of safety devices and the processes for reviewing and approving each plan and use. It also clarifies that safety devices may not be used to modify behavior.
5. It requires the department to conduct a children's behavioral health supports study to study best practices and consider removing planned restraints for children. The study must be submitted to the joint standing committee of the Legislature having jurisdiction over health and human services matters no later than December 1, 2026, and the committee is authorized to report out legislation related to the study.
6. It requires the department to reconvene the interested parties’ group on adult behavioral regulations that was convened in 2024 prior to rulemaking in order to solicit advice on rules to implement the provisions in the bill.
7. It makes the statutory changes effective April 1, 2026. It allows plans that are approved prior to April 1, 2026, that include planned restraints to continue the use of those restraints for one year if considered necessary and approved by the department.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 977 Resolve, Requiring the Maine Health Data Organization to Develop a Plan for Measuring Gaps in Home and Community-based Services.
Summary: This resolve requires the Maine Health Data Organization to develop a plan for annual measurements of the gap between authorized care and the services actually provided for home and community-based services under the MaineCare program, state-funded programs and the forthcoming lifespan program using existing data. The Department of Health and Human Services is required to provide data to the Maine Health Data Organization upon request. The Maine Health Data Organization must submit a report to the Joint Standing Committee on Health and Human Services no later than January 15, 2026.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 46 An Act To Establish A Grant Program To Increase Postsecondary Educational Opportunities For Students With Intellectual Or Developmental Disabilities Or Autism Spectrum Disorder.
Summary: This bill establishes a grant program in the Department of Education to increase postsecondary educational opportunities and support employability for students with intellectual or developmental disabilities or autism spectrum disorder. As amended, this would provide $50,000 in funding for the grant program for FY 26.
Current Status: Funded off the Special Appropriations Table – sent to the Governor for signature. Held by the Governor until the Next Session.
LD 1097 Resolve, to Require the Department of Education to Convene a Group to Develop 12 Best Practices for De-escalation and Behavior Intervention (original title: An Act to Provide De-escalation and Behavior Intervention Training for School Personnel).
Summary: The enacted changed the Bill title, made it a resolve, removes the requirement in the bill that all school administrative units provide training in de-escalation and behavior intervention to each of its administrators, teachers and education technicians.
The amendment retains the requirement in the bill that the Department of Education convene a group of teachers and experts in de-escalation and behavior intervention to develop best practices for training to be distributed to all school administrative units.
Current Status: Sent to the Governor for signature. Held by the Governor until the Next Session.
LD 834 An Act to Update the State Supplement to Supplemental Security Income.
Summary: Increases the minimum state supplemental income benefit to $65 per month for individuals and $97.50 per month for couples (150% of the individual amount).
Starting October 1, 2026, requires the benefit to be annually adjusted based on the cost-of-living increase in the federal payment standard.
Current Status: Engrossed in each Chamber on 6/11 and carried over into the next Session.
LD 840 An Act to Modernize the State Supplement to Supplemental Security Income by Removing Marriage Disincentives. Summary: Replaces provisions of law that currently provide that payments to couples, both of whom receive the supplement, are 150% of the benefit for an individual with provisions of law providing that payments to the couples are 200% of the benefit for an individual.
Current Status: Passed to be Enacted in each Chamber – Placed on the Special Appropriations Table and carried over into the next Session.
LD 1932 An Act to Support Essential Support Workers and Enhance Workforce Development
Summary: This bill increases the rate for the labor portion of reimbursement for services provided by essential support workers from 125% of the minimum wage to 140%. This requirement is effective January 1, 2026. The bill requires that essential support workers whose services are reimbursed under the MaineCare program, or a state-funded program must be paid no less than 125% of the minimum wage. The bill requires the Maine Health Data Organization, in consultation with the Essential Support Workforce Advisory Committee and the Department of Health and Human Services, to develop a methodology for establishing a baseline report in order to be able to examine the care gap in essential support worker services paid by the MaineCare program or a similar state-funded program. The care gap is defined as the difference between approved services and the hours of services actually provided. The bill requires the Department of Administrative and Financial Services to provide a biennial report to the joint standing committee of the Legislature having jurisdiction over health and human services matters that estimates the actual cost to the State of providing all long-term care services and forecasts costs in the future. 24 25 26 Page 6 - 132LR1742(01) The bill changes the membership of the Essential Support Workforce Advisory Committee to include a representative of the long-term care ombudsman program and a representative of an organization that provides personal care services in the home. The bill requires the Department of Health and Human Services to —convene a stakeholder group to develop the Innovations in Care and Support Technology Plan to be submitted by October 15, 2026. The purpose of the plan is to advance the use of technology to reduce the number of approved but unstaffed essential support worker hours. —create a stakeholder group to assist the department in developing a 5-year plan to expand the department's worker portability and advancement initiative to establish a standardized curriculum and training program for essential support workers.
Current Status: Carried over into the next Session.
LD 263 Resolve, to Provide Rural Nonmedical Transportation Services to the Elderly and Adults with Disabilities Receiving Home and Community Benefits Under MaineCare.
Summary: This resolve requires the Department of Health and Human Services to develop a pilot project lasting 18 months that provides nonmedical transportation services to individuals receiving services pursuant to rule Chapter 101: MaineCare Benefits Manual, Chapter II, Section 19, Home and Community Benefits for the Elderly and Adults with Disabilities, in an amount up to $2,000, in addition to currently permissible medical transportation services. The department is required to submit a report regarding the costs, effectiveness and future viability of the pilot project to the Joint Standing Committee on Health and Human Services no later than December 3, 2025.
Current Status: This bill is now dead.
LD 279 An Act To Address The Shortage Of Direct Care Workers For Children With Disabilities In Maine.
Summary: This bill allows for the reimbursement of a parent providing in-home personal care services to the parent's child by allowing the parent to register as a personal care agency if the parent has made reasonable but unsuccessful efforts to obtain regular in-home personal care services and has passed a background check.
Current Status: This bill is now dead.
LD 1509 Resolve, to Maintain Access to Home and Community-based Services for Adults with Intellectual Disabilities, Autism Spectrum Disorder or Brain Injury.
Summary: This resolve directs the Department of Health and Human Services to propose and implement the rates as determined by the department's rate study begun in 2023 and carried out pursuant to the provisions of the Maine Revised Statutes, Title 22, section 3173‑J for services provided by home and community-based services providers under rule Chapter 101: MaineCare Benefits Manual, Chapters II and III, Sections 18, 20, 21 and 29 to adults with intellectual disabilities, autism spectrum disorder or brain injury.
Current Status: This bill is now dead.
LD 1606 An Act to Require Data Collection and Major Substantive Rulemaking for the Lifespan Waiver Providing Home and Community-based Services for Individuals with Intellectual and Developmental Disabilities, Autism Spectrum Disorder or Other Related Conditions.
Summary: This bill requires the rulemaking for the lifespan waiver to be major substantive. Current law requires only the initial rulemaking to be major substantive. The bill also requires the Department of Health and Human Services to collect data related to unmet needs identified in individuals' personal plans and related to residential transitions between group homes, shared living and self-directed residential arrangements. The department is required to publish an annual report with the data on its publicly accessible website and submit the report to the joint standing committee of the Legislature having jurisdiction over health and human services matters.
Current Status: This bill is now dead.
LD 1398 An Act Regarding Behavioral Health Support for Students in Public Schools.
Summary: This bill sets student-to-clinical mental health provider and student-to-school counselor ratios for the purpose of the calculation of salary and benefit costs in the essential programs and services school funding formula.
Current Status: This bill is now dead.
LD 1634 An Act Regarding MaineCare Waiting Lists.
Summary: This bill directs the Department of Health and Human Services to require that for any service covered under the MaineCare program, an individual enrolled in the MaineCare program may not be required to wait for services longer than 6 months from the time the services are requested. If at any time a provider's waiting list exceeds the 6-month waiting limit for those individuals, the department must submit to the joint standing committee of the Legislature having jurisdiction over health and human services matters a corrective action plan to reduce waiting times within 3 months from the time the department becomes aware of this occurrence.
Current Status: This bill is now dead.
The Medicaid cuts passed in HR 1 are significant (see the Federal Update below for more information). There is talk about the Legislature coming back for a Special Session to address the Medicaid cuts as well as other potential/upcoming Federal program cuts.
The next Session is scheduled to start January 7, 2026, and end in April 2026. Cloture is September 26, 2025.
Cullen: This has been a very busy, chaotic stretch, and I want to thank Laura for all of her time and effort keeping us apprised of what was going on in the Legislature and for being a fierce advocate for people with ID/DD in Maine. I also want to thank everyone in this group for rallying and raising your voice. We are all better for it.
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: I wanted to share a few updates with the group. We just updated a number of our webpages. Below is a list of the web pages that have recently been updated/created:
Licensing Rule: The Licensing Rule is still under review. The goal is to share it for public comment this summer.
Lifespan Waiver: The goal is to share the Lifespan Waiver for public comment later this summer.
Sara Fleurant:
Housing Support Funds: Each year, funds are available to assist individuals with intellectual disabilities or autism in covering their housing costs. Historically, the Department provided rental subsidies through individual contracts with home providers on behalf of individuals residing in waiver funded group homes. These subsidies were designed to supplement the amount paid by individuals to providers, covering costs not included by Medicaid, such as room and board.
The Department received feedback from providers of waiver funded group homes indicating that the Room and Board Subsidy was not an effective method of support. Over two years, the Department communicated with providers to inform them that it was exploring more effective ways to distribute these funds. During this time, a Housing Survey was conducted with individuals, family members, and waiver funded group home providers. Additionally, listening sessions were held to share survey results and gather feedback. With this input, the Department has developed a new approach to distribute these funds directly to individuals with intellectual disabilities or autism through a one-time payment. This direct payment method empowers individuals to remain in or move to the housing option of their choice. By providing Housing Support Funds directly to participants, the program offers a more flexible resource, enabling individuals with intellectual disabilities or autism to make their own decisions and address their housing needs independently.
How Housing Support Funds Work: Housing Support Funds are one-time lump-sum payments distributed throughout the year to individuals needing assistance with rent, security deposits, or utility costs. If an individual has a representative payee, the funds are sent directly to that payee on their behalf. Funds are available on a first-come, first-served basis and must be applied for annually. Receiving funds one year does not guarantee funding or the same amount in subsequent years. All applications are subject to OADS’ approval. Along with a completed application, individuals requesting funds must provide proof of a provider room and board agreement, lease agreement, or mortgage. We will begin accepting applications for our new program year July 1, 2025.
Housing Support Program Info Session: Please join us for a discussion on Housing Support Funds. OADS will be holding two zoom calls to discuss the Housing Support Funds program that has replaced the Room and Board Subsidy.
The first zoom meeting will be held on July 24th from 11:30am-12:30pm and will be for individuals receiving waiver services, family members (including guardians and representative payees) and advocacy groups. Please register in advance here.
The second zoom meeting will be held on July 24th from 3:00pm-4:00pm and will be for providers agencies and case managers. Please register in advance here. After registering, you will receive a confirmation email containing information about joining the meeting. Please feel free to circulate this to anyone who may be interested. If you require accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please contact April Keyes at [email protected]. For more details on Housing Support, please see our FAQ guide (PDF) and Housing Support Funds Application (PDF).
Cullen: Thank you both for being here and for these updates!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/obh/support-services/childrens-behavioral-health - No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling could not attend the meeting today but sent the following update via email:
The Division of Vocational Rehabilitation has officially eliminated its waitlist for services in all priority categories. While the waitlist did not have much impact on youth seeking services, it was an issue for adults.
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: This Friday is Disability Pride from 11:00am to 2:00pm at Mill Park in Augusta.
There are two surveys currently out – please feel free to share them widely.
Rachel Dyer – Maine Developmental Disabilities Council (MDDC): DRM, MDDC, and SUFU (Speaking Up For Us) are undertaking a project over the summer to collect short community videos with the goal of increasing the visibility of people with ID/DD in the community. We’re not specifically asking about Medicaid, but the thought behind it is to showcase what Medicaid is doing for people. I also want to quickly add that we are conducting a survey on MDDC’s next 5-year plan. The survey is fairly short, and the feedback will be very helpful.
Cullen: Thank you for providing these updates!
Federal & Housing Updates:
Cullen: The biggest threat that we’re facing is Medicaid cuts, specifically and most recently in the Budget Reconciliation Bill (HR 1, One Big Beautiful Act) which was signed by the President on 7/4 (see below for more information). The entire Maine Delegation attempted to thwart efforts to include cuts to Medicaid in this reconciliation bill by voting against it. The cuts to Medicaid and SNAP will take effect in the fall of 2026, right around the Mid-Term Elections.
We continue to closely look for Executive Orders and other policy proposals which would affect housing, services, and other resources for people with ID/DD. When things arise, we will be sure to make you aware through action alerts.
Executive Orders – President Trump initiated a series of Executive Orders (EOs) which, if implemented/upheld by the courts, could make more difficult for everyone to access to an affordable, accessible home. Per NLIHC, the new Administration’s first actions include:
-Includes portions of the AHCIA: The bill does include key pieces of the Affordable Housing Credit Improvement Act (AHCIA) (S 1515 / HR 2725) that would expand and reform the LIHTC program.
House & Senate FY 26 THUD Budgets – Members of the House and Senate Appropriations Committees are working to reach topline spending agreements—known as “302(b)s”—for each of the 12 annual appropriations bills that fund federal programs and services, including the T-HUD spending bill that funds housing, homelessness, and community development programs run by HUD. The House and Senate are expected to begin their THUD Budget markups the week of 7/21.
President Trump’s FY 26 Budget Request – Per the National Low-Income Housing Coalition (NLIHC): On 5/30 President Trump released the remaining details of the full fiscal year (FY) 2026 budget request. As indicated in the partial request released on 5/2, the full budget request proposes a historic 44% cut to HUD’s vital affordable housing and community development programs and would impose changes to rental assistance that would leave more families struggling to afford rent, and at increased risk of homelessness. The full request cuts domestic spending by more than 22%, including significant cuts to affordable housing and community development programs. Not only would the President’s Budget include drastic cuts to HUD programs, but it would also redesign some of them entirely. The Budget includes a $26.72 billion reduction to HUD’s rental assistance programs – including Housing Choice Vouchers (HCVs), Public Housing, Project-Based Rental Assistance (PBRA), Section 202 Housing for the Elderly, and Section 811 Housing for Persons with Disabilities – by combining them and block granting them into one program, State Rental Assistance Block Grants. The proposal is estimated to amount to an unprecedented 43% cut to HUD rental assistance, would impose a two-year time limit on receiving rental assistance for “able-bodied adults,” and “encourage States to provide funding to share in the responsibility to ensure that similar levels of recipients can benefit from the block grant.”
The President’s Budget would also:
Federal Bills Introduced in the new Congress:
State Legislature Update – No additional updates.
Other Business: None.
The next meeting will be on *** Monday, September 8, 2025*** 12-2:00pm, via Zoom*
Featured Speakers and Topic: TBD.
***Please note there will not be a meeting in August***
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2025 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.
Featured Speaker: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: 2025 MDSOAB Annual Forum Part 2.
Cullen: Each year the MDSOAB holds community forum(s) to pull people familiar with and/or receiving services together to provide input on how well services are working, how they might be improved, and to provide general feedback. Today we are joined by Bonnie Jean Brooks, Executive Director of the MDSOAB to do just that. This forum is designed to start a dialogue. This is one of the primary reasons this Coalition exists – to disseminate information, solicit feedback, and work to optimize the system of care for people with intellectual/developmental disabilities (ID/DD) in Maine. This meeting will feature Part 2 of the Annual Forum (Part 1 occurred at the 6/9 meeting). All feedback will be anonymous so please feel free to be very candid.
We want you all have Bonnie’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well. She will continue to welcome it as she puts a report together. Thank you for being here again today Bonnie!
Bonnie-Jean Brooks: Thank you so much for having me! A few updates from the MDSOAB: MACSP (Maine Association for Community Service Providers) held its Annual Conference recently. Victoria LaBelle from the MDSOAB attended and met with 66 different people during the conference documenting their thoughts and feedback similar to these forums. We received some wonderful information from case managers, direct support professionals (DSPs), and others. I’m very excited to add that there are six (6) agencies in Maine that have stepped forward and are willing to provide conference room space so that we can listen to what people being supported have to say about their services.
As a reminder, the role of the MDSOAB is described in state statute Title 34-B in Chapter 1. In order to carry out its oversight and advisory functions, the board has several powers and duties. One of our roles is “to hold at least one hearing or other forum each year that is open to the public in order to gather information about the availability, accessibility and quality of services available to persons with intellectual disabilities or autism and their families.” The MDSOAB is responsible for overseeing and advising the Maine Department of Health and Human Services (DHHS) and other relevant state departments about challenges, issues, and successes in the system of care for adults with intellectual and developmental disabilities (IDD) and autism spectrum disorder (ASD) in Maine. The MDSOAB advises the state and makes recommendations for improvement. Each year the MDSOAB spends time listening to Mainers as they share their thoughts, insights, and recommendations about the current system of care.
The OAB has a positive working relationship with our state partners and others. We hope to strengthen our collective systems of support by working together. We will listen to your feedback and share it with those partners.
This year we held a 1-hour Forums at the June 9th meeting of the Maine Coalition for Housing and Quality Services, with the second part occurring today. We covered broad questions in June and today, we will be diving into more specific areas. We will also be pleased to accept written comments ([email protected]).
MDSOAB Forum Part 1, June 9th: Please note that responses from Forum Part 1 are being repeated here; they were distributed in the June minutes. Part 2 of the Forum begins further down and is marked clearly as Part 2 in bold.
Please respond to the following prompts concerning the performance of the provider community and ANY state agency in the past year and share your goals and priorities for the future. Direct responses from the group are italicized below.
1. What things have gone well and deserve our acknowledgement?
- My son was in an innovation project. Part of this was for communicating and teaching him how to use FaceTime and his iPad. For the first time ever, he was asked to call me with his iPad when he was sick – no one knew what was wrong with him. He was able to call me and point to his throat to his house manager and able to get on telehealth and open his mouth to the Doctor as well. That was huge for him.
- My son lives in a group home in Bath with another individual. He lives about 10 minutes from the house he grew up in, down the street from where he went to school all his life. He’s well-known in the community. We’ve been very fortunate to have staff who have been consistent over the past few years. I’ve had a few interactions lately with neighbors who know him and his housemate. As I think about the spirit of HCBS, and I think about what we think as families and individuals served are best served by, I think about my son in his home community accessing services with people who really care about his well-being. This is what we should be striving for as a system.
- My favorite partnership is with Speaking Up For Us (SUFU). Maine Developmental Disabilities Council (MDDC) works with SUFU for Advocacy Day at the State House. Over the years we’ve stepped back more because SUFU doesn’t need us! This year’s Advocacy Day was really fantastic. It was great to see that level of self-advocacy at such an important time.
- I want to give a shout-out to OADS on the work they’ve done on the Behavior Regulations. A lot of work has gone into this over a long period of time by a lot of people – largely driven by Betsy’s leadership.
- I also echo the thanks to Betsy for her work. She has been so inclusive and open-minded, really listening to all the parties and stakeholders involved. It’s been a truly wonderful relationship. The relationship between OADS and this group has flourished under her leadership. Hats off to Betsy and OADS for the dedication to inclusivity.
- The Innovation Summit was wonderful. It felt like the first time a lot of people met each other too. Everyone was able to participate in a lot of great interactive work. The networking alone was phenomenal. All of the innovation grants showcased at the Innovation Summit were great. The self-advocacy panel was really fun, and it looked like that work was empowering to people which is amazing.
- There has been a lot of progress on transition which ought to be applauded.
- The focus on and support of storytelling has been great.
- I want to thank the Department for supporting and funding innovation grants. Independence Association has created an interactive app on a touchscreen which is fantastic. Everyone can go in and select the calendar for the week and select the activities they want to participate in. My daughter can also see what staff and other people are attending. My daughter is able to do this all by herself, despite her speech limitations. Families can also download the app so there’s coordination across the board. This has been a huge success.
- When my son was in the innovation grant working on communication, he wasn’t able to access speech or OT (occupational therapy) with any consistency. If he could have pulled these together with the innovation grant, he would have made even more progress.
- I’m glad OADS is reporting on unmet needs – I would love them to report on these by category such as speech and OT. This provides evidence to justify opening more programs or pay them more.
- At one time the agency I’m currently with had a system where I could see daily notes. Now, everyone is stretched so thin there aren’t many daily notes, especially more minor notes like “her foot hurt today”. However, it did come in handy to see these notes. If parents don’t know what’s going on with their child, it’s harder to start conversations in a relaxed way. For instance, if you see in the daily notes that your child went to Bingo, you can bring up Bingo next time you speak with them. This made a huge difference for starting communication between me and my daughter. And, if parents don’t see that their child’s foot has been hurting in the daily notes it comes as more of a shock when there’s apparently a sudden issue with their foot that requires a hospital visit.
- Staff ought to present as friends rather than overstressed people. The people with our children every day need to really know them.
- Having a good idea about what’s happening at my son’s group home is important, especially since my son has limited language. If there’s anything going on that’s even slightly negative my son will refrain from bringing it up at all. If staff are sick or take vacation, there’s a roulette of relief staff. This reenforces the fact that we’re facing a personnel challenge. If staff don’t really know my son and his housemate and their daily routines, it can create real challenges. Being served by direct service professionals (DSP) that truly know the individuals is essential. The DSP shortage exacerbates that problem. Having back-up systems is very important as well.
- My clients and staff come from very different cultural backgrounds, often using different first languages. The Department has done work on this, but bridging this cultural divide continues to be an unmet need. Going forward it would be most supportive if it were led by the Department down, hand in hand with challenges with communication.
- Many agencies have opened in these post-pandemic years. I’ve heard the number 209 in the past few years, most of which are run by people new to the field and new to the country. It appears that this has led to more varying levels of quality in programming. Universal required training, beyond the online DSP models, would be advantageous. Safe-food handling for instance has been a problem, and this is a very basic need/requirement that could be very easily put into place.
- We need a way to improve the reportable events process. Often times the staff don’t want to report things because they worry that they’ll get in trouble etc., but reportable events are essential to the health and safety of our loved ones. There ought to be improved processes, including oversight from the Department, so things don’t slip through the cracks.
- Lack of access to dental care, particularly IV sedation and dentists that accept Medicaid for dental insurance, is a major barrier and it creates a variety of other issues and can worsen behaviors because people are in pain.
- My daughter received the single placement approval because she has such high needs. The amount of rent she was approved for and landlords being unwilling to work with agencies have both been large barriers to housing.
- I was disappointed to see the MDSOAB’s opposition to LD 769. I would have completely understood opposition to the bill because they didn’t like how it was written or wanted more detail etc. But the way I read and heard the testimony, it came across as supporting restraint.
- Transportation remains an issue. The Innovation Summit showcased some cool things going on, but there is still room for improvement. Funding for transportation is often more convoluted than it needs to be and is not as person-centered as it could be.
- The State needs to go back to paying DSPs 125% of minimum wage with cost-of-living (COLA) adjustments.
- To increase connections between residential/disability service providers and the sexual assault response agencies and other service providers in Maine. Training, outreach, and really creating connections between DSPs and the sexual assault response agencies is imperative. We know that people with ID/DD are at a much higher risk of sexual assault/violence/abuse. There is a real need and desire among people with ID/DD for more information and connectivity.
- Ensuring safe food handling, nutritional guidelines, and hygiene training for staff would be very helpful.
- When people think about ID/DD people think it’s about a cognitive/behavioral concept. Sometimes when this happens people zero in on changing behaviors and forget that there could also be mental health components at play. There ought to be more crossover between the ID/DD world and mental health.
- I come to these meetings because I want to hear what people have to say. I don’t contribute much as I don’t feel I have much of a voice these days on these issues because I’m one of those people who have never quite fit into the system. We’re expecting people to fit into certain tracks or silos. Needs and service responses are in silos. If you need this other need met by a service in another silo – good luck. The underlying needs may go unsupported because the focus is on the behavior. The system is set up so that people have to fit into slots, services are designed into certain silos, and everything has to fit into the right funding code. The system is not designed around comprehensive needs. People’s ability to communicate these needs come into play as well. If someone is out in the community grocery shopping which is a home support, and wants to attend a nearby event, they have to go all the way home to log out of home support in order to go attend the event which is a community support. We need to look at these systems in not just a collaborative fashion but cooperatively. Someone should not be impeded from accessing a resource because a box wasn’t checked when the PCP clearly states it’s a need. The response shouldn’t be “no, because it’s not checked off”, it should be “yes, go check that box”. That’s the system’s need to document, not the individual’s needs. The gap going unrecognized exacerbates so many issues. OADS and the Office of Behavioral Health (OBH) have worked hard to collaborate and have their model of service delivery be cooperative. However, the way this ends up playing out is that there are still silos and people are still set on certain tracks.
MDSOAB Forum Part 2, July 14th: Please comment on your successes, experiences, and concerns about the following (direct responses from the group are italicized below):
Advocacy: -I receive calls from neighbors, because they know I’m involved in the disability community, with concerns about people in group homes burning fires too close to the home, setting tires on fire, police interventions, etc. This could be indicative of a lack of support/supervision for people in the home. However, a new type of advocacy for neighbors, town councils, etc. would be helpful. Police often don’t know who the providers are for the home. This advocacy/education could help reduce police interventions and improve the dignity of people with disabilities. People ought to be able to live in their homes. I’ve heard of Town Councils wanting to have group homes identified, and identified as businesses, due to town/neighbor complaints and trying to get them out of the neighborhood. All agencies are businesses and must comply with all local and state laws. Homes supporting people with disabilities are covered by the Federal Fair Housing Act.
-My neighborhood has been an advocate for my daughter – when neighbors have seen situations that could be considered dangerous, they’ve reported it to me which has been helpful.
-Through my experiences with my 38-year-old daughter who lives with me one of my biggest concerns is self-advocacy. Case management and her day program staff have listened to her and as a result she’s been able to get her own home supports. Truly listening and encouragement foster self-advocacy and is a huge part of advocating for people with disabilities.
-I have a 29-year-old son who had a significant event in January. He was fully staffed and his staff ended up calling the police and the situation got out of hand. Fortunately, my husband was able to go and help with communication. The good that came out of it is that we were transitioning to a new agency and we developed a profile for my son – what strategies worked well, what his triggers are, etc. The agency met with the Police Department and gave them an update on my son. The community got to know my son more and have updated information to help in situations that may arise.
-Family advocacy is key. Advocacy is usually going to be greater than what self-advocates can manage. How do we facilitate assistance with that? And how do we intercede when we see the help that they require might be greater than their capacity?
Behavioral Supports: -Often times people (especially people who are nonverbal) use behavior as a form of advocating for themselves.
Case Management: -Case Managers are good, but they can only see the individual one time a month for an hour or less.
Communication/Collaboration: -My son gets remote speech and social work services. The remote option is really important for him and his communication abilities/preferences. Can the upcoming forums for people accessing services be accessed remotely? This would assist more people to participate, self-advocate, and share their voice.
- Bonnie: One of the agencies that’s hosting an upcoming Forum has great technological capabilities. I’ll ask if they can make it available for Zoom participants. Thank you for that recommendation.
- Lucas Cuellar – Disability Rights Maine: You can always call Disability Rights Maine with these issues as we are the protection and advocacy agency for the state. Whether it comes to APS-level of reporting or not, we can step in and help with advocacy around these issues.
-Parents are often the glue that holds everything together currently. With aging parents, what will happen when we’re not here to assist with this?
-Innovation grants pertaining to communication have been wonderful. I’ve seen such a transformation in my son.
Dental Services: - Access to dental services remains problematic.
Other Professional Services: -Access to speech, OT, and psychiatric services remains problematic.
-Having high schools offer sign language in their language programs would raise the visibility of disability and also the support at the same time.
Person-Centered Planning: -The PCP document itself is 15+ pages. It’s very hard for even a very well-informed, well-educated parent to read it. Things get put in that you can’t take out. There’s a lot on the to-do list, but to update this document so it’s more effective and easier to work with would make a huge difference.
-The amount of time and effort that went into IEPs to make them legally compliant, but also not have it be the be-all, end-all for what we were doing was a challenging balancing act. Having all these systems and processes be easy to navigate is essential.
Transportation: No comments provided.
Other:
Innovation Grants: -The innovation grants have been fantastic in terms of trying to address some of the issues in the system that have been identified for years. I’ve seen such a transformation in my son. My son asked for a birthday party – he’s never asked for this before, and it was amazing. We’ve identified all these gaps and then you see these efforts and changes going on and it underscores how much more could have been done all along. It highlights how much people can do when provided the opportunity and support to do so.
Shared Living: -Many shared living providers are parents, and looking around at some of the participants here, including myself, we are not getting younger. What happens to our adult children when we’re not around anymore?
Unmet Needs: -Parents/families are often times filling unmet needs. Without the support that parents provide, people will regress and lose a lot of support. What happens when parents/family members are not in the picture anymore? For example, dialectical behavior therapy (DBT) has been extremely helpful for my daughter, but I had to go out and find it privately because it’s not commonly offered as a service. This has helped with setting realistic goals for behaviors. It’s helped with understanding where behaviors are coming from and how they express her needs – versus trying to change her behaviors.
- Bonnie: Any needs that I’m meeting for my daughter that are not being provided elsewhere I want documented in the PCP and documented that I’m providing it so that it’s included as an unmet need. The Department is trying to develop a mechanism to collect data that is understandable and categorized for unmet needs. It would be great if this type of data was included.
Training: -Trauma-informed care training for professionals that care for/support people with disabilities is important. Working with local colleges and universities would be helpful.
Cullen: I want to thank everyone for sharing their heartfelt comments, and Bonnie for collecting this feedback in June and at today’s meeting. As always, we will be sure that all of the feedback provided today is incorporated into the minutes and given to her for the MDSOAB. This is not the end of the discussion! I would encourage people to keep thinking about this so we can include comments in the final report. If people have additional comments on how things are working and how things could be improved, please email Bonnie ([email protected]). Thank you, Bonnie, for being here today!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP). meacsp.org Topic: Wrap up of the First Session of the 132nd Legislature.
Cullen: I am pleased to welcome Laura Cordes, Executive Director of MACSP, who will be providing a wrap up of the First Session of the 132nd Legislature, including the enacted Biennial and Supplemental Budgets and what bills were enacted pertaining to the continuum of care for people with intellectual/developmental disabilities. Thank you for being here, Laura!
Laura Cordes: Thank you for having me! The Maine Association for Community Service Providers (MACSP) is an association of organizations that provide support and services to children and adults with intellectual disabilities, Autism and Brain Injuries in Maine. MACSP members support a workforce of about 9,000 direct support professionals or direct service professionals in a variety of roles, supporting about 5,000 adults with intellectual disabilities, autism spectrum disorder, or brain injuries.
As this group knows, I created the MCHQS 132nd Maine Legislature First Regular Session 2025 Resource Document, to support the MCHQS' interest in monitoring and engaging in bills of interest. The doc contains an updated list of bills of interest, which I’ll be reviewing in detail. (For more information, please refer to the Google Doc.).
Begin Presentation (Click here for the PDF version of the Google Doc that Laura reviewed in detail.)
The Legislature adjourned Sine Die on 6/25. There are a whole host of bills that either didn’t move through the House and Senate for votes for enactment or didn’t get funded off the Table. The vast majority of these bills were carried over into the next Legislative Session. Some bills passed and were sent to the Governor; however, she did not sign many of these bills into law. Since the Legislature has adjourned Sine Die, she’s essentially “holding” these bills until the Legislature comes back into session.
LD 609 “Continued Operations Biennial Budget”: The Legislature passed a simple “continued operations” budget to ensure that funding went into effect by the start of the State Fiscal Year (7/1/25) since they were unable to pass a Budget with a majority necessary to enact the Budget as an emergency bill.
Current Status: Signed by the Governor. Will take effect: June 20, 2025.
Includes: The baseline budget for each existing program and a subset of initiatives and language parts contained in the Governor’s Biennial Budget proposal. This bill, as enacted, does include one-time funding for MaineCare Cost-of-Living Adjustments (COLAs) for 7/1/25.
LD 210 Biennial Budget: This is the original Biennial Budget bill that turned into the Supplemental Budget for fiscal years 25, 26, and 27. The Legislature included partial cost-of-living adjustment increases (1.95% COLA) for direct care services for 7/1/25.
Current Status: The bill has been signed by the Governor. Click here for the Enacted Chapter Law.
Includes:
- Adds $320 million in additional expenses.
- Closes outstanding funding gap for MaineCare in FY27.
- A partial COLA of 1% for direct care service rates added to budget for January 2026 and 2027.
- AFA rejected: Part UU - Administration proposed changes that would undermine Maine Care Rate Determination System - making rate setting and COLAs subject to available funding and annual COLAs available 6 - 12 months after minimum wage increase.
- Bills voted off of the Special Appropriations Table (see below)
Special Appropriations Table: June 2025 – $7.2 million for 116/292 bills that were awaiting funding.
- Maine Monitor 6/29 The Legislature enacted 116 bills on the special appropriations table. Here’s what that means.
Bills of Interest:
The bills listed below are not a comprehensive list. Please see the Google Doc for the full list of bills and/or the PDF version.
LD 21 An Act to Update the Provision of Law Concerning Student Codes of Conduct in Order to Reflect Best Practices Regarding Behavioral Threat Assessment and Response.
Summary: This bill amends the provision of law governing a school board's adoption of a student code of conduct to require the establishment of policies and procedures for students who may pose a threat of violence in order to reflect best practices regarding behavioral threat assessment and response.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 51 An Act To Increase Oversight Of Fatalities of And Serious Injuries To Adults Subject To Public Guardianship.
Summary: Under current law, the Aging and Disability Mortality Review Panel reviews deaths of and serious injuries to adults receiving services in home-based and community-based services programs, including participants in those programs who are subject to public guardianship. This bill expands the charge of the panel to review all deaths of and serious injuries to adults subject to public guardianship, whether or not they are enrolled in home based and community-based services programs. It also amends the membership of the panel.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 768 An Act to Update the Laws Governing the Licensing of Intermediate Care Facilities for Persons with Intellectual Disabilities.
Summary: This bill updates the provision of law governing the licensing of intermediate care facilities for individuals with intellectual disabilities, or ICF/IIDs, to establish specific licensing requirements in statute. Under current law, there are no licensing standards for these facilities, only authority for the Department of Health and Human Services to adopt rules governing licensing standards. The bill both codifies existing department rules governing the licensing of ICF/IIDs and updates these licensing standards to align with similar licensing laws. The bill updates related statutory language and a headnote. The bill also amends the provision of law governing the reporting of sentinel events at health care facilities by removing ICF/IIDs from the list of health care facilities that are required to make reports to the department under this provision.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 769 An Act Regarding Access to Behavioral Health Supports for Adults with Certain Disabilities.
Summary: This bill amends the law governing access to behavioral health support for adults with an intellectual disability or autism.
The adopted Amendment made the following changes:
1. It clarifies that blocking and redirection are not considered restraints and are not prohibited from inclusion in a modifying behavioral health support plan.
2. It clarifies that the Department of Health and Human Services may use either a licensed clinical social worker or a psychologist to review behavioral health support plans.
3. It adds members to the support and safety committee and requires the department to provide deidentified copies of behavioral health support plans to the committee.
4. It clarifies the distinctions between positive behavioral health support plans, modifying behavioral health support plans and the use of safety devices and the processes for reviewing and approving each plan and use. It also clarifies that safety devices may not be used to modify behavior.
5. It requires the department to conduct a children's behavioral health supports study to study best practices and consider removing planned restraints for children. The study must be submitted to the joint standing committee of the Legislature having jurisdiction over health and human services matters no later than December 1, 2026, and the committee is authorized to report out legislation related to the study.
6. It requires the department to reconvene the interested parties’ group on adult behavioral regulations that was convened in 2024 prior to rulemaking in order to solicit advice on rules to implement the provisions in the bill.
7. It makes the statutory changes effective April 1, 2026. It allows plans that are approved prior to April 1, 2026, that include planned restraints to continue the use of those restraints for one year if considered necessary and approved by the department.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 977 Resolve, Requiring the Maine Health Data Organization to Develop a Plan for Measuring Gaps in Home and Community-based Services.
Summary: This resolve requires the Maine Health Data Organization to develop a plan for annual measurements of the gap between authorized care and the services actually provided for home and community-based services under the MaineCare program, state-funded programs and the forthcoming lifespan program using existing data. The Department of Health and Human Services is required to provide data to the Maine Health Data Organization upon request. The Maine Health Data Organization must submit a report to the Joint Standing Committee on Health and Human Services no later than January 15, 2026.
Current Status: Signed by the Governor – will become Public Law. Click here for the Final Chaptered Law.
LD 46 An Act To Establish A Grant Program To Increase Postsecondary Educational Opportunities For Students With Intellectual Or Developmental Disabilities Or Autism Spectrum Disorder.
Summary: This bill establishes a grant program in the Department of Education to increase postsecondary educational opportunities and support employability for students with intellectual or developmental disabilities or autism spectrum disorder. As amended, this would provide $50,000 in funding for the grant program for FY 26.
Current Status: Funded off the Special Appropriations Table – sent to the Governor for signature. Held by the Governor until the Next Session.
LD 1097 Resolve, to Require the Department of Education to Convene a Group to Develop 12 Best Practices for De-escalation and Behavior Intervention (original title: An Act to Provide De-escalation and Behavior Intervention Training for School Personnel).
Summary: The enacted changed the Bill title, made it a resolve, removes the requirement in the bill that all school administrative units provide training in de-escalation and behavior intervention to each of its administrators, teachers and education technicians.
The amendment retains the requirement in the bill that the Department of Education convene a group of teachers and experts in de-escalation and behavior intervention to develop best practices for training to be distributed to all school administrative units.
Current Status: Sent to the Governor for signature. Held by the Governor until the Next Session.
LD 834 An Act to Update the State Supplement to Supplemental Security Income.
Summary: Increases the minimum state supplemental income benefit to $65 per month for individuals and $97.50 per month for couples (150% of the individual amount).
Starting October 1, 2026, requires the benefit to be annually adjusted based on the cost-of-living increase in the federal payment standard.
Current Status: Engrossed in each Chamber on 6/11 and carried over into the next Session.
LD 840 An Act to Modernize the State Supplement to Supplemental Security Income by Removing Marriage Disincentives. Summary: Replaces provisions of law that currently provide that payments to couples, both of whom receive the supplement, are 150% of the benefit for an individual with provisions of law providing that payments to the couples are 200% of the benefit for an individual.
Current Status: Passed to be Enacted in each Chamber – Placed on the Special Appropriations Table and carried over into the next Session.
LD 1932 An Act to Support Essential Support Workers and Enhance Workforce Development
Summary: This bill increases the rate for the labor portion of reimbursement for services provided by essential support workers from 125% of the minimum wage to 140%. This requirement is effective January 1, 2026. The bill requires that essential support workers whose services are reimbursed under the MaineCare program, or a state-funded program must be paid no less than 125% of the minimum wage. The bill requires the Maine Health Data Organization, in consultation with the Essential Support Workforce Advisory Committee and the Department of Health and Human Services, to develop a methodology for establishing a baseline report in order to be able to examine the care gap in essential support worker services paid by the MaineCare program or a similar state-funded program. The care gap is defined as the difference between approved services and the hours of services actually provided. The bill requires the Department of Administrative and Financial Services to provide a biennial report to the joint standing committee of the Legislature having jurisdiction over health and human services matters that estimates the actual cost to the State of providing all long-term care services and forecasts costs in the future. 24 25 26 Page 6 - 132LR1742(01) The bill changes the membership of the Essential Support Workforce Advisory Committee to include a representative of the long-term care ombudsman program and a representative of an organization that provides personal care services in the home. The bill requires the Department of Health and Human Services to —convene a stakeholder group to develop the Innovations in Care and Support Technology Plan to be submitted by October 15, 2026. The purpose of the plan is to advance the use of technology to reduce the number of approved but unstaffed essential support worker hours. —create a stakeholder group to assist the department in developing a 5-year plan to expand the department's worker portability and advancement initiative to establish a standardized curriculum and training program for essential support workers.
Current Status: Carried over into the next Session.
LD 263 Resolve, to Provide Rural Nonmedical Transportation Services to the Elderly and Adults with Disabilities Receiving Home and Community Benefits Under MaineCare.
Summary: This resolve requires the Department of Health and Human Services to develop a pilot project lasting 18 months that provides nonmedical transportation services to individuals receiving services pursuant to rule Chapter 101: MaineCare Benefits Manual, Chapter II, Section 19, Home and Community Benefits for the Elderly and Adults with Disabilities, in an amount up to $2,000, in addition to currently permissible medical transportation services. The department is required to submit a report regarding the costs, effectiveness and future viability of the pilot project to the Joint Standing Committee on Health and Human Services no later than December 3, 2025.
Current Status: This bill is now dead.
LD 279 An Act To Address The Shortage Of Direct Care Workers For Children With Disabilities In Maine.
Summary: This bill allows for the reimbursement of a parent providing in-home personal care services to the parent's child by allowing the parent to register as a personal care agency if the parent has made reasonable but unsuccessful efforts to obtain regular in-home personal care services and has passed a background check.
Current Status: This bill is now dead.
LD 1509 Resolve, to Maintain Access to Home and Community-based Services for Adults with Intellectual Disabilities, Autism Spectrum Disorder or Brain Injury.
Summary: This resolve directs the Department of Health and Human Services to propose and implement the rates as determined by the department's rate study begun in 2023 and carried out pursuant to the provisions of the Maine Revised Statutes, Title 22, section 3173‑J for services provided by home and community-based services providers under rule Chapter 101: MaineCare Benefits Manual, Chapters II and III, Sections 18, 20, 21 and 29 to adults with intellectual disabilities, autism spectrum disorder or brain injury.
Current Status: This bill is now dead.
LD 1606 An Act to Require Data Collection and Major Substantive Rulemaking for the Lifespan Waiver Providing Home and Community-based Services for Individuals with Intellectual and Developmental Disabilities, Autism Spectrum Disorder or Other Related Conditions.
Summary: This bill requires the rulemaking for the lifespan waiver to be major substantive. Current law requires only the initial rulemaking to be major substantive. The bill also requires the Department of Health and Human Services to collect data related to unmet needs identified in individuals' personal plans and related to residential transitions between group homes, shared living and self-directed residential arrangements. The department is required to publish an annual report with the data on its publicly accessible website and submit the report to the joint standing committee of the Legislature having jurisdiction over health and human services matters.
Current Status: This bill is now dead.
LD 1398 An Act Regarding Behavioral Health Support for Students in Public Schools.
Summary: This bill sets student-to-clinical mental health provider and student-to-school counselor ratios for the purpose of the calculation of salary and benefit costs in the essential programs and services school funding formula.
Current Status: This bill is now dead.
LD 1634 An Act Regarding MaineCare Waiting Lists.
Summary: This bill directs the Department of Health and Human Services to require that for any service covered under the MaineCare program, an individual enrolled in the MaineCare program may not be required to wait for services longer than 6 months from the time the services are requested. If at any time a provider's waiting list exceeds the 6-month waiting limit for those individuals, the department must submit to the joint standing committee of the Legislature having jurisdiction over health and human services matters a corrective action plan to reduce waiting times within 3 months from the time the department becomes aware of this occurrence.
Current Status: This bill is now dead.
The Medicaid cuts passed in HR 1 are significant (see the Federal Update below for more information). There is talk about the Legislature coming back for a Special Session to address the Medicaid cuts as well as other potential/upcoming Federal program cuts.
The next Session is scheduled to start January 7, 2026, and end in April 2026. Cloture is September 26, 2025.
Cullen: This has been a very busy, chaotic stretch, and I want to thank Laura for all of her time and effort keeping us apprised of what was going on in the Legislature and for being a fierce advocate for people with ID/DD in Maine. I also want to thank everyone in this group for rallying and raising your voice. We are all better for it.
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: I wanted to share a few updates with the group. We just updated a number of our webpages. Below is a list of the web pages that have recently been updated/created:
- Adults w/ Intellectual and Developmental Disability &/or Autism (Get Support): https://www.maine.gov/dhhs/oads/get-support/adults-intellectual-disability-and-autism
- Adults w/ Intellectual and Developmental Disability &/or Autism (Providers): https://www.maine.gov/dhhs/oads/providers/adults-with-intellectual-disability-and-autism
- Forms & Protocols (Providers): https://www.maine.gov/dhhs/oads/providers/adults-with-intellectual-disability-and-autism/forms-protocols
- Intake & Eligibility (Get Support): https://www.maine.gov/dhhs/oads/get-support/adults-intellectual-disability-and-autism/intake-and-eligibility
- Waiver Services (Section 21 and 29): https://www.maine.gov/dhhs/oads/get-support/adults-intellectual-disability-and-autism/waiver-services
Licensing Rule: The Licensing Rule is still under review. The goal is to share it for public comment this summer.
Lifespan Waiver: The goal is to share the Lifespan Waiver for public comment later this summer.
Sara Fleurant:
Housing Support Funds: Each year, funds are available to assist individuals with intellectual disabilities or autism in covering their housing costs. Historically, the Department provided rental subsidies through individual contracts with home providers on behalf of individuals residing in waiver funded group homes. These subsidies were designed to supplement the amount paid by individuals to providers, covering costs not included by Medicaid, such as room and board.
The Department received feedback from providers of waiver funded group homes indicating that the Room and Board Subsidy was not an effective method of support. Over two years, the Department communicated with providers to inform them that it was exploring more effective ways to distribute these funds. During this time, a Housing Survey was conducted with individuals, family members, and waiver funded group home providers. Additionally, listening sessions were held to share survey results and gather feedback. With this input, the Department has developed a new approach to distribute these funds directly to individuals with intellectual disabilities or autism through a one-time payment. This direct payment method empowers individuals to remain in or move to the housing option of their choice. By providing Housing Support Funds directly to participants, the program offers a more flexible resource, enabling individuals with intellectual disabilities or autism to make their own decisions and address their housing needs independently.
How Housing Support Funds Work: Housing Support Funds are one-time lump-sum payments distributed throughout the year to individuals needing assistance with rent, security deposits, or utility costs. If an individual has a representative payee, the funds are sent directly to that payee on their behalf. Funds are available on a first-come, first-served basis and must be applied for annually. Receiving funds one year does not guarantee funding or the same amount in subsequent years. All applications are subject to OADS’ approval. Along with a completed application, individuals requesting funds must provide proof of a provider room and board agreement, lease agreement, or mortgage. We will begin accepting applications for our new program year July 1, 2025.
Housing Support Program Info Session: Please join us for a discussion on Housing Support Funds. OADS will be holding two zoom calls to discuss the Housing Support Funds program that has replaced the Room and Board Subsidy.
The first zoom meeting will be held on July 24th from 11:30am-12:30pm and will be for individuals receiving waiver services, family members (including guardians and representative payees) and advocacy groups. Please register in advance here.
The second zoom meeting will be held on July 24th from 3:00pm-4:00pm and will be for providers agencies and case managers. Please register in advance here. After registering, you will receive a confirmation email containing information about joining the meeting. Please feel free to circulate this to anyone who may be interested. If you require accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please contact April Keyes at [email protected]. For more details on Housing Support, please see our FAQ guide (PDF) and Housing Support Funds Application (PDF).
Cullen: Thank you both for being here and for these updates!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/obh/support-services/childrens-behavioral-health - No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling could not attend the meeting today but sent the following update via email:
The Division of Vocational Rehabilitation has officially eliminated its waitlist for services in all priority categories. While the waitlist did not have much impact on youth seeking services, it was an issue for adults.
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: This Friday is Disability Pride from 11:00am to 2:00pm at Mill Park in Augusta.
There are two surveys currently out – please feel free to share them widely.
- Help DRM Learn More About YOUR Work: https://drme.org/help-drm-learn-more-about-your-work/
- DRM Priorities FY 2026: https://www.surveymonkey.com/r/DRMPriorities
Rachel Dyer – Maine Developmental Disabilities Council (MDDC): DRM, MDDC, and SUFU (Speaking Up For Us) are undertaking a project over the summer to collect short community videos with the goal of increasing the visibility of people with ID/DD in the community. We’re not specifically asking about Medicaid, but the thought behind it is to showcase what Medicaid is doing for people. I also want to quickly add that we are conducting a survey on MDDC’s next 5-year plan. The survey is fairly short, and the feedback will be very helpful.
Cullen: Thank you for providing these updates!
Federal & Housing Updates:
Cullen: The biggest threat that we’re facing is Medicaid cuts, specifically and most recently in the Budget Reconciliation Bill (HR 1, One Big Beautiful Act) which was signed by the President on 7/4 (see below for more information). The entire Maine Delegation attempted to thwart efforts to include cuts to Medicaid in this reconciliation bill by voting against it. The cuts to Medicaid and SNAP will take effect in the fall of 2026, right around the Mid-Term Elections.
We continue to closely look for Executive Orders and other policy proposals which would affect housing, services, and other resources for people with ID/DD. When things arise, we will be sure to make you aware through action alerts.
Executive Orders – President Trump initiated a series of Executive Orders (EOs) which, if implemented/upheld by the courts, could make more difficult for everyone to access to an affordable, accessible home. Per NLIHC, the new Administration’s first actions include:
- Directing federal agencies to terminate all diversity, equity, inclusion, and accessibility (DEIA) practices and policies and rescind previous executive actions expanding DEI efforts to underserved communities.
- Institute a hiring freeze which would prevent HUD from hiring essential staff.
- Denying fair housing and civil rights protections to LGBTQ individuals.
- Directing federal agencies to prevent sanctuary jurisdictions, or jurisdictions that limit or deny cooperation with federal immigration enforcement, from receiving federal investments. If this EO is used to deny states and localities access to federal funding, it could undermine local governments’ ability to help families purchase a home and build more affordable rental housing.
-Includes portions of the AHCIA: The bill does include key pieces of the Affordable Housing Credit Improvement Act (AHCIA) (S 1515 / HR 2725) that would expand and reform the LIHTC program.
- Low-Income Housing Tax Credit (LIHTC) Expansion: The act permanently increases LIHTC allocations and reduces the bond financing requirement for certain properties. These changes are anticipated to support the creation of over a million additional affordable homes over the next decade.
- Opportunity Zone (OZ) Program: The OBBBA makes the OZ program permanent with changes to eligibility and a requirement for a percentage of zones to be in rural areas.
- Other Relevant Provisions: The bill includes extensions of the New Markets Tax Credit and bonus depreciation, along with a phase-down of certain green energy tax credits.
- Cuts Medicaid by more than $1 trillion – the largest cut in history.
- Work Requirements: The bill expands the provision taking away Medicaid from people who don’t meet a work requirement so that it would apply to parents enrolled through the Medicaid expansion who have children older than 13.
- CBPP estimates that between 9.7 million and 14.4 million people would be at risk under the House bill. However, the enacted Bill includes parents with children over the age of 13 which would put an additional 160,000 to 380,000 adults at risk.
- Severely limits how some states finance their Medicaid programs.
- Cuts eligibility across all major health coverage programs for most categories of immigrants living lawfully in the U.S.
- SNAP would be cut by $186 billion through 2034, according to the Congressional Budget Office (CBO) (about a 20% cut). This is the largest SNAP cut in history, which could lead some states to end their program entirely.
- Most states would be required to pay 5 to 15 percent of food benefits. If a state can’t make up for these massive federal cuts with tax increases or spending cuts elsewhere in its budget, it would have to cut its SNAP program (such as by restricting eligibility or making it harder for people to enroll) or it could opt out of the program altogether.
- Work Requirements: Under current SNAP rules, most non-elderly, non-disabled adults without children in their homes can’t receive benefits for more than three months out of every three years if they don’t document they are working at least 20 hours per week or prove they qualify for an exemption. The Bill expands this restriction to older adults aged 55-64 and to parents whose youngest child is at least 14 years old, while also significantly limiting waivers for areas with poor economic conditions. The final version of this bill strips current exemptions from the work requirement for veterans, people experiencing homelessness, and former foster youth.
- Cut food benefits by an average of $100 per month for about 600,000 low-income households by eliminating an administrative simplification for calculating utility expenses for many households.
House & Senate FY 26 THUD Budgets – Members of the House and Senate Appropriations Committees are working to reach topline spending agreements—known as “302(b)s”—for each of the 12 annual appropriations bills that fund federal programs and services, including the T-HUD spending bill that funds housing, homelessness, and community development programs run by HUD. The House and Senate are expected to begin their THUD Budget markups the week of 7/21.
President Trump’s FY 26 Budget Request – Per the National Low-Income Housing Coalition (NLIHC): On 5/30 President Trump released the remaining details of the full fiscal year (FY) 2026 budget request. As indicated in the partial request released on 5/2, the full budget request proposes a historic 44% cut to HUD’s vital affordable housing and community development programs and would impose changes to rental assistance that would leave more families struggling to afford rent, and at increased risk of homelessness. The full request cuts domestic spending by more than 22%, including significant cuts to affordable housing and community development programs. Not only would the President’s Budget include drastic cuts to HUD programs, but it would also redesign some of them entirely. The Budget includes a $26.72 billion reduction to HUD’s rental assistance programs – including Housing Choice Vouchers (HCVs), Public Housing, Project-Based Rental Assistance (PBRA), Section 202 Housing for the Elderly, and Section 811 Housing for Persons with Disabilities – by combining them and block granting them into one program, State Rental Assistance Block Grants. The proposal is estimated to amount to an unprecedented 43% cut to HUD rental assistance, would impose a two-year time limit on receiving rental assistance for “able-bodied adults,” and “encourage States to provide funding to share in the responsibility to ensure that similar levels of recipients can benefit from the block grant.”
The President’s Budget would also:
- Defund Parent Training and Information Centers.
- Create a Special Education Block Grant for each state.
- Cut funding for state disability rights organizations, developmental disability councils, university and Head Start programs, among other programs.
Federal Bills Introduced in the new Congress:
- The Home Accessibility Tax Credit Act: Introduced by Senators King and Welch, this bill would establish a refundable tax credit for eligible home modifications designed to improve accessibility — saving both Americans with the highest risk of falling, as well as taxpayers, from the high medical costs associated with falls.
- HR 2540 SSI Savings Penalty Elimination Act: This is a bipartisan (expected to be bicameral) bill that would amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility. This bill would 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 343/HR 869 Keep our PACT Act: This bill would require full funding of part A of title I of the Elementary and Secondary Education Act of 1965 and the Individuals with Disabilities Education Act.
- HR 1634 Think DIFFERENTLY About Disability Employment Act: This bill would provide for a memorandum of understanding between the Small Business Administration and the National Council on Disability to increase employment opportunities for individuals with disabilities, and for other purposes.
- HR 1757 EMPSA Act: This bill would amend title XVI of the Social Security Act to provide that the supplemental security income benefits of adults with intellectual or developmental disabilities shall not be reduced by marriage.
- S 466 Fairness for Disabled Young Adults Act: This bill would amend title II of the Social Security Act to increase the age threshold for eligibility for child's insurance benefits on the basis of disability.
- S 1515 / HR 2725 The Affordable Housing Credit Improvement Act of 2025: Representatives Darin LaHood (R-IL), Suzan DelBene (D-WA), Randy Feenstra (R-IA), Don Beyer (D-VA), Claudia Tenney (R-NY), and Jimmy Panetta (D-CA) reintroduced this bill on 4/8. The Senate companion bill was reintroduced on 4/29. This bill has more than 120 cosponsors in the House, half from each party, and 33 in the Senate (including Senator Collins), signifying great bipartisan support. Per NLIHC: The AHCIA would increase the allocation of credits by 50% over two years, adjust rules to facilitate the production and preservation of more homes financed with tax-exempt bonds, and enact reforms to make LIHTC a better tool for development in underserved communities. If enacted, the AHCIA would reform the tax credit to provide additional incentives to developers to build homes affordable to extremely low-income households most impacted by the housing crisis, as well as underserved rural and Native American communities.
State Legislature Update – No additional updates.
Other Business: None.
The next meeting will be on *** Monday, September 8, 2025*** 12-2:00pm, via Zoom*
Featured Speakers and Topic: TBD.
***Please note there will not be a meeting in August***
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2025 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].