June 9, 2025
Minutes
Minutes
Attendees via Zoom: Amanda Parker, Betsy Hopkins, Bonnie-Jean Brooks, Brenda Smith, Carol Snyder, Darla Chafin, David Cowing, Debbie Dionne, Elizabeth Burgess, J Richardson Collins, Jamie Whitehouse, Jennifer Frey, Jennifer Putnam, Julianne Zaharis, Keri Lopes, Kim Humphrey, Libby Stone-Sterling, Lily Lin, Lucas Cuellar, Margaret Cardoza, Melissa Bliss, Peyton Gosselin, Rachel Dyer, Sammy-Ellie MacKinnon, Sara Fleurant, Shelley Zielinski, Shelly King, 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.
Cullen thanked Darla, a long-time Coalition Member, for being here today and voiced his support for her during this very challenging time. He acknowledged her strength and perseverance despite her great tragedy (loss of her daughter). Cullen extended the sentiment that the entire group’s thoughts are with her. Cullen and Darla acknowledged that we’re all here for one another in whatever capacity we can.
Featured Speaker: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: 2025 MDSOAB Annual Forum Part 1.
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 year we will be holding the Forum in two parts, with the second part occurring at our July 14th meeting. This will be similar to the past few years’ MDSOAB annual forums. All feedback will be anonymous so please feel free to be very candid. Betsy reached out in advance of today’s meeting and very much welcomes all feedback – so please feel free to be 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, Bonnie, for being here today and for your extensive career, expertise, and leadership!
Bonnie-Jean Brooks: Thank you so much for having me! I’m very happy to say that we now have 13 of the target 15 members of the MDSOAB Board. We are meeting with two additional people and if they’re selected our Board will be full! I’m also very happy to say that five of the Members are people with lived experience.
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 are holding 1-hour Forums at the June 9th and July 14th meetings of the Maine Coalition for Housing and Quality Services. We’ll be covering broad questions today and then diving into more specific areas in July. We will also be pleased to accept written comments ([email protected]). We will also plan to reach out to individuals receiving services in ways and places that are convenient for them.
MDSOAB Forum Part 1, June 9th: 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:
Cullen: I want to thank everyone for their courage in sharing their heartfelt comments, and Bonnie for collecting this feedback. We will continue this discussion with Part 2 at our July meeting. We will be sure that all of the feedback provided today is incorporated into the minutes and given to her for the MDSOAB. 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)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: I really want to thank Bonnie and everyone who spoke up and shared your stories. I was listening, and we have been listening and working on a number of things that I hope will help address some of the issues brought up. I know it’s frustrating that change takes time, but we are working on a number of things that I hope will help the system evolve in a positive direction.
Chapter 5 Behavioral Workgroup: The workgroup that met with us for over a year to discuss the plan to update our Chapter 5 Rule which includes the behavior modification and safety plan process has begun meeting again. For updates to this work you can find the PowerPoints we use at each meeting and notes here. LD 769 was born out of this group’s work. After the Public Hearing for we heard a lot of great feedback, and the bill was amended. One part of the amendment was to bring back the workgroup, not only to talk about aspects specifically covered in the Bill, but everything included in Chapter 5 – which will be a large undertaking.
Quality assurance and Oversight Final Report and Next Steps: OADS has shared its final report and next steps with groups involved in Quality Assurance and Oversight. We held town halls to inform everyone about the report and potential changes that might happen to continue trying to keep people safe and healthy. In those town halls, DHHS talked about:
Innovation Summit Follow-Up: We were so pleased to have more than 500 people attend the Innovation Summit. Follow up information about OAD’s Innovation Summit: A Path for Maine can be found here.
Lifespan Waiver Update: The draft of the Waiver is still in progress. We expect this will go out for public comment later this summer.
Licensing Rule Update: The draft of the Licensing Rule is still in progress, which will address programmatic and safety standards comprehensively and will hopefully address some of the issues that were brought up today. We expect this will go out for public comment later this summer.
Home and Community-Based Services (HCBS) CAHPS® Announcement: The State of Maine Department of Health and Human Services (DHHS) wants to make Home and Community Based Services better. We would like to hear about Medicaid beneficiary experiences with waiver services. To do that, for the third consecutive year, the State of Maine’s Office of Aging and Disability Services (OADS) is completing the Consumer Assessment of Healthcare Providers & Systems (CAHPS®) Home and Community Based Services (HCBS) survey. A survey firm, Knowledge Services, will again be assisting the State with survey administration. Beginning in June 2025, Knowledge Services will contact randomly selected HCBS waiver program participants by mail and telephone to offer a participation opportunity. Survey participation is voluntary. Additional information about the CAHPS® survey is available here:
-There was discussion regarding the work the OADS and OBH has done to collaborate and have a cooperative model of service – specifically for the CCBHCs (Certified Community behavioral Health Clinics). OADS and 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. There still seems to be silos between OBH and OADS in this regard. And the CCBHCs are all required have to have a Board and that it is constituted in a certain way including a large percentage of people with lived experience. This ought to be inclusive of people with ID/DD. There’s a tremendous amount of work that’s gone into all of this, which is commendable, but more work remains when it comes to interfacing and sharing information with people with ID/DD.
-It was asked if the hospital closures have affected the medical care of people with ID/DD.
Betsy: I personally have not heard of any specific situations, which is not to say that none have occurred, but there could definitely be a potential impact.
Cullen: Thank you for being here, Betsy, 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 had to leave the meeting early but sent the following update via email:
The VR College Bus Tours: The VR College Bust Tours are fully booked for this summer.
Innovation Summit: The Bureau of Rehabilitation Services had a great time presenting, learning, and staffing a table at the Innovation Summit – meeting lots of providers and individuals with lived expertise! The DRM Youth Self-Advocacy project that had a plenary panel at the Summit, will be included as an initiative under the “Pathways to Partnerships” Grant – and expanded to include a broader population of youth.
VR Orientation: As a reminder, we have a regular VR Orientation session online monthly:
Division of Vocational Rehabilitation (DVR) is pleased to offer a monthly virtual orientation to Vocational Rehabilitation (VR) services for individuals with disabilities. The orientation will be an opportunity to learn about VR services and how VR can support you in obtaining, maintaining and advancing employment.
Topics that will be covered:
DVR orientation is offered virtually every third Thursday of the month from 9-10 am. No pre-registration necessary. Captioning and ASL will be available.
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: Part of what DRM does includes monitoring in the community in a variety of ways. We have re-doubled our efforts to get into the communities and into homes – starting with the smaller and quiet ones we don’t hear from as much. Our goal is to get to all of the group homes in the state within about a year and a half. If you have thoughts about agencies that you think we ought to prioritize please reach out to me: [email protected]
The President’s Budget includes many proposed cuts, including state disability rights organizations, developmental disability councils, university and Head Start programs, the Maine Long-term Care Ombudsman Program etc. We have developed a sign-on letter to send to our Delegation in opposition to these proposed budget cuts. Please see the sign-on letter for more information.
Disability Pride will take place on 7/18 from 11:00am to 2:00pm at Mill Park in Augusta.
Cullen: Thank you for providing these updates!
Federal & Housing Updates:
Cullen: It continues to be a very stressful time with a lot of unknowns. As we have been discussing, there’s an effort to thwart a lot of government programs. We continue to see a lot being thrown out there all at once to create confusion. There continue to be more questions than answers. It is helpful that we can come together as a Coalition and share information and get through all of this together.
Despite any and all attempts to undermine our work, advocacy efforts remain important. We have the benefit of a Delegation that appears to be firmly on the side of trying to stop these efforts. The biggest threat that we’re facing is potential cuts to Medicaid, specifically and most recently in the FY 26 Budget Reconciliation Bill which has been passed by both Chambers of Congress, albeit by narrow-thin margins. The entire Maine Delegation attempted to thwart efforts to include cuts to Medicaid in this reconciliation bill by voting against it, which deserves thanks.
Medicaid is also the target of cuts through various other congressional efforts, including Medicaid per capita cap and block grant proposals, floating around Congress (see below for more information). We will continue to monitor this closely. We will also continue to closely watch 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:
-Lowers 50% test to 25% for obligations made after December 31, 2025, and before January 1, 2030
-Adds 30% basis boost for rural and Native communities for buildings placed in service after December 31, 2025, and before January 1, 2030
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:
House Agriculture Committee Bill – SNAP cuts/changes – This includes a total of $300 billion in SNAP cuts from FY 26 to FY 34 including:
-Older adults aged 55 to 64.
-Restricting waivers that states are able to submit to lift work requirements in areas of high unemployment.
Federal Bills Introduced in the new Congress:
-It was asked where Senator Collins stands on all of this. A self-advocate stated she reached out and didn’t receive a reply.
Cullen: She has been responsive when I’ve reached out, so I’m surprised to hear she wasn’t when you did. She understands the need for HUD’s Budget to be sufficient to fund programs as well as the importance of Medicaid. I would encourage you to reach out again. There’s been an extraordinary amount of outreach to our Congressional Offices which may delay replies.
State Legislature Update
If you’ve been in this space you’ve seen the MCHQS 132nd Maine Legislature First Regular Session 2025 Resource Document, which is a Google Document that can be edited – please let Laura Cordes know if you have any edits.
Supplemental Budget – click here for the General Fund Language; click here for Part A. The Legislature was unable to pass the Supplemental Budget (LD 209). The bill is now officially dead.
MaineCare announced a plan to cap payments which will begin for the majority of providers in the ID/DD sector later this month. Payments will be delayed – for instance if you submit seven bills, six may be paid and the seventh will be delayed (this is just an example). The Department has been very thoughtful in its attempt to not have capped payments affect providers that rely on MaineCare funding. However, we just don’t know how this is going to work.
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).
LD 210 Biennial Budget: This is the original Biennial Budget bill. The Legislature is still working on details related to other Budget initiatives not included in LD 609.
Bills of Interest: More than 2,000 bills were filed. The list of working titles submitted before Cloture is available online. Committees are expected to vote bills out of their committees by 5/9/25. Some of the bills listed are still Legislative Requests (LRs) and may merge with other bills. Some of these bills may look familiar from previous Legislative Sessions. Most bills have been printed, with Public Hearings underway.
The bills listed below are not a comprehensive list. Please see the Google Doc for the full list of bills.
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.
Current Status: Passed to be Enacted in each Chamber – Placed on the Special Appropriations Table.
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 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 home19 based and community-based services programs. It also amends the membership of the panel.
Current Status: Signed by the Governor – will become Public Law.
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 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: Passed to be Enacted in each Chamber. The Bill now goes to the Governor for signature.
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: HHS Committee voted OTP-AM.
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.
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 by replacing a complex multiparty review process with a clinical review requirement. It also removes the authority to use restraints on adults except as an emergency short-term step to protect the adult from imminent injury to that adult or others. It also codifies existing rules on safety devices, making it clear that such devices are not considered positive behavioral health support plans and therefore do not require the same level of review as positive behavioral health support plans. Also, to conform with current practice, the bill repeals a provision of law regarding the authority of providers of residential services to establish house rules in residential units owned or operated by the provider.
Current Status: Passed to be Engrossed in each Chamber. The Bill now faces votes for enactment.
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 1097 An Act to Provide De-escalation and Behavior Intervention Training for School Personnel.
Summary: This bill directs a school administrative unit to provide, beginning in the 2026-2027 school year and every 3rd year thereafter, at least 4 hours of training to each of its school administrators, teachers and education technicians in topics related to de-escalation and behavior intervention. It directs the Department of Education to maintain a list of trainings and a list of experts who can help school administrative units provide training. It requires school administrative units to offer training to all new school administrators, teachers and education technicians within 60 days of hiring. It requires the department to convene teachers and other educators and experts to develop best practices for trainings and distribute the best practices to all school administrative units in the State no later than September 1, 2026.
Current Status: Passed to be Enacted in each Chamber – Placed on the Special Appropriations Table.
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 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 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.
Key Committees and Committee Members, with contact information, are also included in the Google Doc. As a reminder, if you can’t attend Public Hearings when they occur, I would encourage you to submit testimony online , ideally on or before the day of the hearing.
Cullen: Next month Laura will be presenting a wrap up of everything that occurred in this Legislative Sesson. This has been a very busy, chaotic stretch, and I want to thank everyone in this group for rallying and raising your voice. We are all better for it.
Other Business: None.
The next meeting will be on Monday, July 14, 2025, 12-2:00pm, via Zoom*.
Featured Speakers: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: 2025 MDSOAB Annual Forum Part 2. And,
Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP).
Topic: Wrap up of the First Session of the 132nd Legislature.
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.
Cullen thanked Darla, a long-time Coalition Member, for being here today and voiced his support for her during this very challenging time. He acknowledged her strength and perseverance despite her great tragedy (loss of her daughter). Cullen extended the sentiment that the entire group’s thoughts are with her. Cullen and Darla acknowledged that we’re all here for one another in whatever capacity we can.
Featured Speaker: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: 2025 MDSOAB Annual Forum Part 1.
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 year we will be holding the Forum in two parts, with the second part occurring at our July 14th meeting. This will be similar to the past few years’ MDSOAB annual forums. All feedback will be anonymous so please feel free to be very candid. Betsy reached out in advance of today’s meeting and very much welcomes all feedback – so please feel free to be 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, Bonnie, for being here today and for your extensive career, expertise, and leadership!
Bonnie-Jean Brooks: Thank you so much for having me! I’m very happy to say that we now have 13 of the target 15 members of the MDSOAB Board. We are meeting with two additional people and if they’re selected our Board will be full! I’m also very happy to say that five of the Members are people with lived experience.
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 are holding 1-hour Forums at the June 9th and July 14th meetings of the Maine Coalition for Housing and Quality Services. We’ll be covering broad questions today and then diving into more specific areas in July. We will also be pleased to accept written comments ([email protected]). We will also plan to reach out to individuals receiving services in ways and places that are convenient for them.
MDSOAB Forum Part 1, June 9th: 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:
- Advocacy
- Behavioral Supports
- Case Management
- Communication
- Dental Services
- Other Professional Services
- Person-Centered Planning
- Transportation
- Other
Cullen: I want to thank everyone for their courage in sharing their heartfelt comments, and Bonnie for collecting this feedback. We will continue this discussion with Part 2 at our July meeting. We will be sure that all of the feedback provided today is incorporated into the minutes and given to her for the MDSOAB. 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)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: I really want to thank Bonnie and everyone who spoke up and shared your stories. I was listening, and we have been listening and working on a number of things that I hope will help address some of the issues brought up. I know it’s frustrating that change takes time, but we are working on a number of things that I hope will help the system evolve in a positive direction.
Chapter 5 Behavioral Workgroup: The workgroup that met with us for over a year to discuss the plan to update our Chapter 5 Rule which includes the behavior modification and safety plan process has begun meeting again. For updates to this work you can find the PowerPoints we use at each meeting and notes here. LD 769 was born out of this group’s work. After the Public Hearing for we heard a lot of great feedback, and the bill was amended. One part of the amendment was to bring back the workgroup, not only to talk about aspects specifically covered in the Bill, but everything included in Chapter 5 – which will be a large undertaking.
Quality assurance and Oversight Final Report and Next Steps: OADS has shared its final report and next steps with groups involved in Quality Assurance and Oversight. We held town halls to inform everyone about the report and potential changes that might happen to continue trying to keep people safe and healthy. In those town halls, DHHS talked about:
- Summary of the HCBS Quality Assurance project.
- Ideas that could make incident management better.
- What OADS plans to do next.
- Questions & Answers.
Innovation Summit Follow-Up: We were so pleased to have more than 500 people attend the Innovation Summit. Follow up information about OAD’s Innovation Summit: A Path for Maine can be found here.
Lifespan Waiver Update: The draft of the Waiver is still in progress. We expect this will go out for public comment later this summer.
Licensing Rule Update: The draft of the Licensing Rule is still in progress, which will address programmatic and safety standards comprehensively and will hopefully address some of the issues that were brought up today. We expect this will go out for public comment later this summer.
Home and Community-Based Services (HCBS) CAHPS® Announcement: The State of Maine Department of Health and Human Services (DHHS) wants to make Home and Community Based Services better. We would like to hear about Medicaid beneficiary experiences with waiver services. To do that, for the third consecutive year, the State of Maine’s Office of Aging and Disability Services (OADS) is completing the Consumer Assessment of Healthcare Providers & Systems (CAHPS®) Home and Community Based Services (HCBS) survey. A survey firm, Knowledge Services, will again be assisting the State with survey administration. Beginning in June 2025, Knowledge Services will contact randomly selected HCBS waiver program participants by mail and telephone to offer a participation opportunity. Survey participation is voluntary. Additional information about the CAHPS® survey is available here:
-There was discussion regarding the work the OADS and OBH has done to collaborate and have a cooperative model of service – specifically for the CCBHCs (Certified Community behavioral Health Clinics). OADS and 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. There still seems to be silos between OBH and OADS in this regard. And the CCBHCs are all required have to have a Board and that it is constituted in a certain way including a large percentage of people with lived experience. This ought to be inclusive of people with ID/DD. There’s a tremendous amount of work that’s gone into all of this, which is commendable, but more work remains when it comes to interfacing and sharing information with people with ID/DD.
-It was asked if the hospital closures have affected the medical care of people with ID/DD.
Betsy: I personally have not heard of any specific situations, which is not to say that none have occurred, but there could definitely be a potential impact.
Cullen: Thank you for being here, Betsy, 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 had to leave the meeting early but sent the following update via email:
The VR College Bus Tours: The VR College Bust Tours are fully booked for this summer.
Innovation Summit: The Bureau of Rehabilitation Services had a great time presenting, learning, and staffing a table at the Innovation Summit – meeting lots of providers and individuals with lived expertise! The DRM Youth Self-Advocacy project that had a plenary panel at the Summit, will be included as an initiative under the “Pathways to Partnerships” Grant – and expanded to include a broader population of youth.
VR Orientation: As a reminder, we have a regular VR Orientation session online monthly:
Division of Vocational Rehabilitation (DVR) is pleased to offer a monthly virtual orientation to Vocational Rehabilitation (VR) services for individuals with disabilities. The orientation will be an opportunity to learn about VR services and how VR can support you in obtaining, maintaining and advancing employment.
Topics that will be covered:
- What is DVR?
- Eligibility for DVR
- Application process
- Transition Services
- VR Services
DVR orientation is offered virtually every third Thursday of the month from 9-10 am. No pre-registration necessary. Captioning and ASL will be available.
- Join Zoom Meeting
DVR Orientation
Meeting ID: 859 2169 2602
Passcode: 48226391
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: Part of what DRM does includes monitoring in the community in a variety of ways. We have re-doubled our efforts to get into the communities and into homes – starting with the smaller and quiet ones we don’t hear from as much. Our goal is to get to all of the group homes in the state within about a year and a half. If you have thoughts about agencies that you think we ought to prioritize please reach out to me: [email protected]
The President’s Budget includes many proposed cuts, including state disability rights organizations, developmental disability councils, university and Head Start programs, the Maine Long-term Care Ombudsman Program etc. We have developed a sign-on letter to send to our Delegation in opposition to these proposed budget cuts. Please see the sign-on letter for more information.
Disability Pride will take place on 7/18 from 11:00am to 2:00pm at Mill Park in Augusta.
Cullen: Thank you for providing these updates!
Federal & Housing Updates:
Cullen: It continues to be a very stressful time with a lot of unknowns. As we have been discussing, there’s an effort to thwart a lot of government programs. We continue to see a lot being thrown out there all at once to create confusion. There continue to be more questions than answers. It is helpful that we can come together as a Coalition and share information and get through all of this together.
Despite any and all attempts to undermine our work, advocacy efforts remain important. We have the benefit of a Delegation that appears to be firmly on the side of trying to stop these efforts. The biggest threat that we’re facing is potential cuts to Medicaid, specifically and most recently in the FY 26 Budget Reconciliation Bill which has been passed by both Chambers of Congress, albeit by narrow-thin margins. The entire Maine Delegation attempted to thwart efforts to include cuts to Medicaid in this reconciliation bill by voting against it, which deserves thanks.
Medicaid is also the target of cuts through various other congressional efforts, including Medicaid per capita cap and block grant proposals, floating around Congress (see below for more information). We will continue to monitor this closely. We will also continue to closely watch 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. There are two key reforms to LIHTC included in the bill to help the program better serve people and communities with the most urgent affordable housing needs: a basis boost for rural and tribal communities, and an extremely low-income (ELI) basis boost for properties that set aside at least 20% of units for ELI renters. These provisions would make it easier for developers to use LIHTC to build deeply affordable homes, and affordable homes in rural and tribal communities. Specifically, the bill includes:
-Lowers 50% test to 25% for obligations made after December 31, 2025, and before January 1, 2030
-Adds 30% basis boost for rural and Native communities for buildings placed in service after December 31, 2025, and before January 1, 2030
- Other low-income housing related inclusions: Modifies the definition of low-income community (to having a poverty rate of 20% or having a median household income which does not exceed 70% of the metro area median household income/statewide median household income for non-metro areas). Also provides that census tract median income must be less than 125% of statewide median family income for non-metro tracts and less than 125% of the metro area median income for metro area tracts to qualify as a low-income community.
- Medicaid cuts: The package includes nearly $700 billion in reduced spending in the Medicaid program. To be eligible for Medicaid, there would be new “community engagement requirements” of at least 80 hours per month of work, education or service for able-bodied adults without dependents. The new requirements would begin on Dec. 31, 2026. People would also have to verify their eligibility for the program twice a year, rather than just once. A preliminary estimate from the nonpartisan Congressional Budget Office said the proposals would reduce the number of people with health care by 8.6 million over the decade.
- SNAP cuts/changes: SNAP would be reduced by about $267 billion over 10 years. States would shoulder 5% of benefit costs, beginning in fiscal 2028, and 75% of the administrative costs. Currently, states pay none of the benefit and half of the administration costs. Work requirements to receive food aid are expanded. Under current law, able-bodied adults without dependents must fulfill work requirements until they are 54, and that would change under the bill to age 64. Also, some parents are currently exempt from work requirements until their children are 18; that would change so only those caring for a dependent child under the age of 7 are exempt.
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.
House Agriculture Committee Bill – SNAP cuts/changes – This includes a total of $300 billion in SNAP cuts from FY 26 to FY 34 including:
- $150 billion cost shifting to states.
- $27 billion cost shifting to states’ administrative costs (state responsibility increased from 50 to 75%).
- $37 billion cut to future adjustments to the Thrifty Food Plan.
- $6 billion cut by limiting the use of energy assistance.
- Removes all access to SNAP for any refugees and asylum seekers.
- $92 billion cut by expanding SNAP work requirements including reducing or eliminating SNAP for:
-Older adults aged 55 to 64.
-Restricting waivers that states are able to submit to lift work requirements in areas of high unemployment.
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.
-It was asked where Senator Collins stands on all of this. A self-advocate stated she reached out and didn’t receive a reply.
Cullen: She has been responsive when I’ve reached out, so I’m surprised to hear she wasn’t when you did. She understands the need for HUD’s Budget to be sufficient to fund programs as well as the importance of Medicaid. I would encourage you to reach out again. There’s been an extraordinary amount of outreach to our Congressional Offices which may delay replies.
State Legislature Update
If you’ve been in this space you’ve seen the MCHQS 132nd Maine Legislature First Regular Session 2025 Resource Document, which is a Google Document that can be edited – please let Laura Cordes know if you have any edits.
Supplemental Budget – click here for the General Fund Language; click here for Part A. The Legislature was unable to pass the Supplemental Budget (LD 209). The bill is now officially dead.
MaineCare announced a plan to cap payments which will begin for the majority of providers in the ID/DD sector later this month. Payments will be delayed – for instance if you submit seven bills, six may be paid and the seventh will be delayed (this is just an example). The Department has been very thoughtful in its attempt to not have capped payments affect providers that rely on MaineCare funding. However, we just don’t know how this is going to work.
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).
LD 210 Biennial Budget: This is the original Biennial Budget bill. The Legislature is still working on details related to other Budget initiatives not included in LD 609.
Bills of Interest: More than 2,000 bills were filed. The list of working titles submitted before Cloture is available online. Committees are expected to vote bills out of their committees by 5/9/25. Some of the bills listed are still Legislative Requests (LRs) and may merge with other bills. Some of these bills may look familiar from previous Legislative Sessions. Most bills have been printed, with Public Hearings underway.
The bills listed below are not a comprehensive list. Please see the Google Doc for the full list of bills.
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.
Current Status: Passed to be Enacted in each Chamber – Placed on the Special Appropriations Table.
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 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 home19 based and community-based services programs. It also amends the membership of the panel.
Current Status: Signed by the Governor – will become Public Law.
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 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: Passed to be Enacted in each Chamber. The Bill now goes to the Governor for signature.
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: HHS Committee voted OTP-AM.
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.
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 by replacing a complex multiparty review process with a clinical review requirement. It also removes the authority to use restraints on adults except as an emergency short-term step to protect the adult from imminent injury to that adult or others. It also codifies existing rules on safety devices, making it clear that such devices are not considered positive behavioral health support plans and therefore do not require the same level of review as positive behavioral health support plans. Also, to conform with current practice, the bill repeals a provision of law regarding the authority of providers of residential services to establish house rules in residential units owned or operated by the provider.
Current Status: Passed to be Engrossed in each Chamber. The Bill now faces votes for enactment.
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 1097 An Act to Provide De-escalation and Behavior Intervention Training for School Personnel.
Summary: This bill directs a school administrative unit to provide, beginning in the 2026-2027 school year and every 3rd year thereafter, at least 4 hours of training to each of its school administrators, teachers and education technicians in topics related to de-escalation and behavior intervention. It directs the Department of Education to maintain a list of trainings and a list of experts who can help school administrative units provide training. It requires school administrative units to offer training to all new school administrators, teachers and education technicians within 60 days of hiring. It requires the department to convene teachers and other educators and experts to develop best practices for trainings and distribute the best practices to all school administrative units in the State no later than September 1, 2026.
Current Status: Passed to be Enacted in each Chamber – Placed on the Special Appropriations Table.
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 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 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.
Key Committees and Committee Members, with contact information, are also included in the Google Doc. As a reminder, if you can’t attend Public Hearings when they occur, I would encourage you to submit testimony online , ideally on or before the day of the hearing.
Cullen: Next month Laura will be presenting a wrap up of everything that occurred in this Legislative Sesson. This has been a very busy, chaotic stretch, and I want to thank everyone in this group for rallying and raising your voice. We are all better for it.
Other Business: None.
The next meeting will be on Monday, July 14, 2025, 12-2:00pm, via Zoom*.
Featured Speakers: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: 2025 MDSOAB Annual Forum Part 2. And,
Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP).
Topic: Wrap up of the First Session of the 132nd Legislature.
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].