Maine Coalition for Housing and Quality Services (MCHQS)
Meeting Minutes
May 11, 2026
Meeting Minutes
May 11, 2026
Attendees via Zoom: Alli Vercoe, Anat Levey, Bonnie-Jean Brooks, Bridget McCabe, Bridget Whiting, Carol Denis, Carrie Woodcock, Catherine Thibedeau, Crystal Castro, Cullen Ryan, David Cowing, Debbie Riordan Dionne, Derek Fales, Diane Boas, Erin Berry, Jackie Sartoris, Jaime Rogers, Jennifer Frey, Kathy Rickards, Kelly Skillings, Kim Humphrey, Lani Carlson, Liz Burgess, Margaret Cordoza, Maura McDermott, Megan Salvin, Mindy Ward, Nancy Cronan, Paula Bush, Peter Bucklin, Rachel Dyer, Robin Levesque, Sara Fleurant, Shelley King, Shelley Zielinski, Susanne Fetherolf, Thomas Leet and possibly a few people who joined after the meeting began and left prior to the conclusion of the meeting.
Cullen opened the meeting by introducing himself, welcoming attendees, introducing all attendees, and appreciating everyone’s participation. Cullen noted that the Coalition began 20 years ago this month and that this marks the Coalition’s 20th anniversary of providing an information clearinghouse and a forum for discussion and engagement around two primary focus areas: housing and services. He reflected that the system has remained transparent, inclusive, and supportive of new ideas and collaboration. Cullen gave particular recognition of DHHS OADS for steady participation and transparency of information and dialogue, something key to this working well for everyone. Cullen thanked everyone for attending today’s meeting.
Cullen Ryan then provided a brief overview of the Coalition. The Minutes from the April meeting were accepted.
Featured Speakers: Kim Humphrey, Community Connect Maine; Rachel Dyer, Maine
Developmental Disabilities Council; Carrie Woodcock, Maine Parent Federation.
Topic: Panel discussion on Maine’s proposed Lifespan Waiver application to CMS, which would significantly change how ID/DD services are delivered. The waiver is currently open for public review and comment through 5/13. Discussion will include potential benefits, concerns, and how to participate in the public comment process.
Cullen welcomed and introduced and welcomed the presenters today, Kim Humphrey from Community Connect Maine, Rachel Dyer from Maine Developmental Disabilities Council, and Carrie Woodcock representing the Maine Parent Federation. Cullen also noted and thanked the Department representatives with us today, Derek Fales, and Sara Fleurant. He noted there has been both significant praise for the Department of Health and Human Services, Office of Aging and Disability Services (OADS), and ongoing questions about implementation of the Lifespan Waiver. Cullen reflected that the Coalition helped shape a vision for a continuum of care beginning in 2009 and many feel OADS has listened to the Coalition’s input over the years as demonstrated in the Lifespan Waiver application.
Cullen reviewed the Coalition’s longstanding advocacy efforts related to the waitlists, which began in 2008, and noted the concerns regarding transitions from children’s services into Sections 21 and 29 leading to development of the Lifespan Waiver. He acknowledged that many issues have been addressed through the Lifespan Waiver application, while several concerns remain. These include confusion about how the waiver will roll out; financial implications and risks; the SIS-A assessment and appeals process; how person-centered planning (PCP) and case management will function within the Lifespan system; workforce shortages; accountability and outcomes; and the system’s capacity to implement these changes alongside the existing structure.
Cullen shared that, while there is much to applaud, this meeting was intended as an opportunity to openly discuss concerns prior to public comments being due on May 13 at 11:59 p.m. He noted that Derek and Sara may be able to answer questions in real time during the discussion.
Begin Presentation: (links are provided below) Kim provided an overview of the proposed Lifespan Waiver application using a PowerPoint presentation and introduced co-presenters Carrie and Rachel. Carrie and Rachel each shared information about themselves and offered commentary throughout the presentation based on their knowledge, experience, and perspectives.
Kim emphasized the importance of stakeholder engagement while the proposal remains in draft form. Kim noted this is a critical opportunity for individuals, families, providers, and other stakeholders to discuss what they support, identify potential risks, and share how the proposed changes may impact their lives and services. She stressed that lived experience is essential in shaping the future of the system and encouraged participants to provide feedback during the public comment period.
Rachel shared that the Developmental Disabilities Council has been involved in the process for more than three years and noted she has never seen another service proposal with this level of stakeholder input or revisions made in response to community feedback. She described the Lifespan Waiver as a potentially transformative next step in the evolution of home and community-based services (HCBS), offering a broad and flexible array of supports. At the same time, Rachel expressed concerns regarding administrative complexity and ongoing workforce shortages, which she believes continue to impact the overall service system and are not fully addressed within the waiver proposal. She also noted that national partners and individuals connected to the Centers for Medicare and Medicaid Services (CMS) are closely following Maine’s work because of its innovative approach, and she emphasized the importance of continued stakeholder involvement during future rulemaking and implementation discussions.
Kim reviewed the PowerPoint presentation, which included an overview of the Lifespan Waiver, key proposed changes, why the proposal matters, how it may affect individuals and families, and instructions for submitting public comments. Participants were encouraged to review the concise summary (The Plain Language Version) of the proposal, which may be easier to navigate than the full 334-page application, as well as additional resources including a recent DHHS webinar recording and Lifespan language summary materials.
Kim emphasized that the Lifespan Waiver represents a significant, once-in-a-generation systems change, making it especially important for individuals, families, and providers to share their experiences and perspectives. She stressed that lived experience is essential in helping shape the future of services and encouraged participants to use their voices during the public comment period. Kim also referenced a recent DHHS webinar (held on Friday, 5/8/26) and encouraged participants to review the webinar recording and the Lifespan language summary document to better understand the proposal.
Helpful links:
Discussion/Questions/Comments:
Derek, during the presentation, noted that some slides contained inaccuracies, encouraging participants to refer to official DHHS materials, including the SIS-A presentation and Plain Language resources, for the most accurate information (see links above). He clarified that SIS-A is an independent assessment required by CMS used to determine tiered levels of support and not to make decisions about services, staffing, or funding. He explained that person-centered planning (PCP) identifies individual goals and determines the supports, service settings, and staffing needed to meet those goals, while SIS-A informs level of need only. Derek also noted that some terminology in the presentation should be corrected, including replacing references to “budget” with “tiered payment levels,” and suggested removing or revising certain slides. He offered to work with Kim to correct the inaccuracies in the PowerPoint presentation. He encouraged participants to submit public comments if any part of the proposal is unclear, emphasized the importance of reviewing official DHHS resources and webinar materials, and underscored the value of public input in shaping the final proposal before leaving the meeting early.
Carrie noted that the Lifespan Waiver begins engagement considerations around age 14 and was intended not to disrupt children’s services or transitions into adult services, but rather to better prepare individuals. She stated that recent eligibility changes related to children’s services (Sections 28 and 13 TCM) were driven by the Department of Justice (DOJ) settlement, but it is still unclear how these changes will impact youth ages 14–17 within the Lifespan Waiver. She also noted that there has been no clear response yet from the responsible offices regarding how these changes will affect children and young adults. (A link has been added above for anyone interested in the DHHS website page regarding this settlement).
Kim acknowledged concerns raised about system stability and how multiple changes may interact. She also asked for clarification on SIS-A from Carrie later in the discussion. Kim noted ongoing questions about oversight and emphasized interest in stronger accountability measures to ensure unmet needs are identified and tracked. She also referenced concerns about administrative structure and the importance of ensuring resources remain focused on direct services.
A parent asked why eligibility requirements are changing.
Carrie responded that the changes are related to requirements under a DOJ settlement agreement, which is contributing to broader system reforms that may include adjustments to eligibility criteria. She noted that these changes may impact the Lifespan waiver but are not driven by the waiver itself.
Bonnie stated that the Lifespan Waiver represents the most significant systems change since the Pineland Consent Decree (1978), describing it as affecting more individuals than that earlier reform. She emphasized that systems change is difficult but necessary and stressed the importance of maintaining a person-centered approach. She raised concern that administrative growth historically expands during system transitions and emphasized that funding should prioritize direct services. She also noted that SIS-A is only a tool and does not reflect the full picture of a person, highlighting the importance of PCP in understanding individual needs. She expressed concern about tiered systems and the risk of unintended consequences if changes are not carefully implemented.
A parent asked about the purpose of SIS-A.
Derek explained that CMS requires an independent assessment process, and SIS-A fulfills that requirement. He reiterated that SIS-A does not determine services, staffing, or funding.
The same parent then asked how discrepancies between SIS-A results and individual needs are resolved.
Derek explained that differences are addressed through the person-centered planning process, where the team identifies supports, services, staffing needs, and settings based on the individual’s goals and preferences.
Kim noted that there remains confusion in some areas of the application and reiterated the importance of clear public input. She encouraged participants to continue reviewing available materials and submit comments on unclear sections.
A self-advocate expressed appreciation for the presentation and reflected on the historical significance of system change. She emphasized the importance of dignity, person-first approaches, and ensuring individuals do not fall through gaps in services. She raised concerns about administrative growth and stressed that funding should prioritize direct support services. She noted that SIS-A does not capture the full complexity of a person’s needs and emphasized the importance of PCP in understanding the whole individual. She also expressed concern about tiered structures and system complexity.
Bonnie added historical context, noting the Pineland Consent Decree and emphasizing that administrative promises and structures often shift across administrations. She raised concerns about increasing bureaucracy and stressed the importance of ensuring that legislative mandates support direct services rather than administrative expansion. She encouraged continued public engagement at every opportunity.
Nancy Cronin expressed concern about changes in children’s services eligibility and how this will interact with the Lifespan Waiver. She raised concerns about case management, including the potential need to choose between service systems, and emphasized that these details need to be clearly addressed in rulemaking. She stressed the importance of ensuring children and adults receive needed services without gaps or barriers. She also raised concerns about system silos and transitions between children’s and adult services.
A provider noted that SIS-A is required by CMS and tied to tiered rates, which are a foundational element of the waiver. She acknowledged the complexity of the system and stated that while there is much to appreciate, it is difficult to fully understand due to its layered structure.
A parent raised concerns about system complexity and questioned how the model will function given expanded eligibility and added administrative requirements. He asked whether other systems, such as the Department of Education and Individual Education Plans (IEP), have been included in planning discussions and expressed uncertainty about how coordination will occur across systems. He also questioned whether the proposal is cost-neutral and how it will be implemented at scale.
Carrie responded that there is limited coordination between systems such as the Department of Education and DHHS and emphasized that families already face significant challenges navigating transitions from children’s to adult services. She noted that system silos remain a major barrier and contribute to gaps in care.
A parent shared concerns about the person-centered planning (PCP) process, noting that in her experience as a parent/guardian, it has not consistently identified the level of support needed to achieve individual goals. She emphasized the importance of ensuring that PCP is implemented effectively, that all steps are followed, and that supports are responsive to fluctuating needs. The parent also raised concerns about how SIS-A will account for changing conditions over time. In addition, she expressed concern that some case managers/Community Resource Coordinator’s may not fully understand the PCP process which could result in missed steps that are essential for effective planning and service delivery.
A parent shared her perspective, noting both positive aspects and concerns. She described past experiences with Section 21 services and emphasized the ongoing stress families experience in maintaining eligibility and services. She expressed concern that repeated reassessments and system changes create instability and anxiety. She urged caution in implementing the Lifespan Waiver too quickly and suggested addressing existing issues in current systems first to reduce fear of service loss.
Rachel expressed appreciation for the breadth of perspectives shared and noted that historical context is important to understanding current concerns. She reiterated concerns about system silos and challenges families face navigating services, particularly across diagnoses and transitions.
Carrie added that early identification and intervention systems in Maine remain fragmented, particularly across education and early childhood systems. She noted that lack of coordination has contributed to service gaps for children and young people and emphasized that improving early supports is essential to long-term system success.
Kim concluded by emphasizing that strengthening supports across the lifespan begins with ensuring children’s systems are effective, as this directly impacts adult services and outcomes.
Nancy added that broader system shifts and silos remain a major concern and noted that the pace and scale of change is challenging for families and providers alike.
A self-advocate reflected on the influence of changing political priorities and expressed appreciation for the collaborative nature of the current discussion.
Bonnie emphasized the importance of cross walking existing rules and mandates and noted that technology and data requirements should ultimately support service development. She encouraged continued engagement and participation in the public comment process.
Kim encouraged participants to continue submitting comments and emphasized the importance of public input.
Cullen closed the discussion by thanking presenters, Kim, Rachel, and Carrie and included Derek for his clarifications, and participants for their thoughtful engagement. He emphasized that public comments are due by May 13 at 11:59 p.m. and encouraged individuals to submit concerns, questions, and feedback as part of the process. He noted that all voices are important and thanked everyone for participating in the presentation and discussion.
End Presentation.
Service Updates:
DHHS, Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Sara Fleurant shared that the most significant update from OADS relates to the Lifespan Waiver application and information previously provided through the presentation and additional information provided by Derek. She encouraged participants to review available OADS resources, including the webinar, Plain Language Version, FAQ’s, and other supporting materials designed to help individuals understand the history, current status, and public comment process (see links provided above). She also strongly encouraged submission of public Comments.
Sara also explained that the 811 program is a partnership between the State of Maine and the U.S. Department of Housing and Urban Development (HUD), designed to support individuals with disabilities in accessing integrated, affordable housing. She noted that program details, including eligibility criteria and application information, are available on the DHHS website. She also referenced Housing Support Funds as an additional resource to help eligible individuals with housing-related costs. Training and informational resources for both programs are available online at: https://www.maine.gov/dhhs/oads/get-support/housing-services.
Sara noted that OADS continues to accept and process applications for Housing Support Funds, which assist individuals with intellectual disabilities or autism in covering housing-related expenses. Funds are available on a one-time basis with potential for second time support, and may be used for rent, security deposits, or utilities. Support may be provided to individuals living in apartments, privately owned homes, or group home settings. Eligible applicants include individuals receiving services through the Section 21 Comprehensive Waiver and Section 29 Support Waiver. Applications should be completed using the Housing Support Funds application and submitted to [email protected].
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) (can we work on this<- www.maine.gov/dhhs/obh/support-services/childrens-behavioral-health - No formal update was provided at this meeting. A self-advocate noted the importance of maintaining strong communication and engagement with this system area given its relevance to children’s services and transitions. It was suggested that follow-up be made with a new contact to support ongoing coordination and input from the agency. Chris McLaughlin was identified as a potential point of contact (Thank you Margaret!): [email protected]
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr - no update provided.
DOE, Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed -
No update provided
Disability Rights Maine - DRM (link to website)
Megin Salvin reviewed the application and shared that she is developing written comments for Disability Rights Maine and will share with the group. She also noted that work related to developmental disabilities rights education is ongoing, including community support training activities such as the new Rights Jeopardy game which will include statewide tournaments designed to reinforce knowledge and engagement across the system.
A self-advocate shared that she and her husband, who is blind, have been invited to participate in testing voting accessibility machines with the Secretary of State’s office. She expressed appreciation for the opportunity and enthusiasm about the effort to improve accessibility in voting systems. Margaret was also appreciated for her efforts in advocacy.
Federal & Housing Updates:
Federal Budget Update of Note:
Cullen reported that the Department of Housing and Urban Development’s (HUD) budget has been funded, though the reach of the limited funds is still unclear. He noted that the most significant concern ahead is the potential for impending Medicaid cuts, which could have significant implications for Maine, particularly following November elections. He shared that as the timeline approaches the Coalition will plan a presentation, likely in September, with Michele Probert, Director of MaineCare Services, DHHS, to discuss how Maine may respond and navigate these challenges.
Bonnie referenced proposed federal Medicaid policy changes discussed in the context of a federal budget reconciliation bill (sometimes informally referred to in public discourse as the “Big Beautiful Bill”). She expressed concern about potential changes to eligibility redetermination requirements, including more frequent Medicaid re-determination for individuals with intellectual and developmental disabilities.
State Legislative Updates
Cullen reported that there were no formal updates from the Legislature at this time. Cullen noted that the State Legislature is currently in a quiet period but gearing up for the upcoming election cycle, with approximately one-third turnover expected and new bills anticipated to be introduced around December. He also noted that the general election is scheduled for November 3rd.
It was noted that Senator Susan Collins is preparing legislation to exempt individuals with IID/DD from every 6 months Medicaid re-certification requirements, in an effort to reduce administrative burden and improve continuity of coverage. People can write to Senator Collins to support the bill when it is finished. Advocacy efforts will be important to support advancement of this bill and that individuals will be able to submit letters of support once the legislation is finalized. It was noted that MACSP is seeking personal stories, ideas, and talking points from individuals and families to help inform and strengthen that advocacy work.
Cullen closed the meeting by once again acknowledging the Coalition’s 20-year anniversary and the ongoing value of coming together to build connections, learn about systems, and help influence change. He thanked participants for their engagement and for working through complex information in real time, as well as for the opportunity to have an open forum where DHHS and other partners share updates and respond to questions. Cullen noted that significant changes are underway and encouraged participants to continue using their voices in the public comment process. He ended by wishing everyone a happy anniversary and thanking all for their continued participation and commitment.
Coalition Website - MAINE COALITION FOR HOUSING & QUALITY SERVICES
Next Meeting: June 8, 2026, 12:00 - 2:00.
Featured Speaker and Topic: TBD.
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 meeting.
Cullen opened the meeting by introducing himself, welcoming attendees, introducing all attendees, and appreciating everyone’s participation. Cullen noted that the Coalition began 20 years ago this month and that this marks the Coalition’s 20th anniversary of providing an information clearinghouse and a forum for discussion and engagement around two primary focus areas: housing and services. He reflected that the system has remained transparent, inclusive, and supportive of new ideas and collaboration. Cullen gave particular recognition of DHHS OADS for steady participation and transparency of information and dialogue, something key to this working well for everyone. Cullen thanked everyone for attending today’s meeting.
Cullen Ryan then provided a brief overview of the Coalition. The Minutes from the April meeting were accepted.
Featured Speakers: Kim Humphrey, Community Connect Maine; Rachel Dyer, Maine
Developmental Disabilities Council; Carrie Woodcock, Maine Parent Federation.
Topic: Panel discussion on Maine’s proposed Lifespan Waiver application to CMS, which would significantly change how ID/DD services are delivered. The waiver is currently open for public review and comment through 5/13. Discussion will include potential benefits, concerns, and how to participate in the public comment process.
Cullen welcomed and introduced and welcomed the presenters today, Kim Humphrey from Community Connect Maine, Rachel Dyer from Maine Developmental Disabilities Council, and Carrie Woodcock representing the Maine Parent Federation. Cullen also noted and thanked the Department representatives with us today, Derek Fales, and Sara Fleurant. He noted there has been both significant praise for the Department of Health and Human Services, Office of Aging and Disability Services (OADS), and ongoing questions about implementation of the Lifespan Waiver. Cullen reflected that the Coalition helped shape a vision for a continuum of care beginning in 2009 and many feel OADS has listened to the Coalition’s input over the years as demonstrated in the Lifespan Waiver application.
Cullen reviewed the Coalition’s longstanding advocacy efforts related to the waitlists, which began in 2008, and noted the concerns regarding transitions from children’s services into Sections 21 and 29 leading to development of the Lifespan Waiver. He acknowledged that many issues have been addressed through the Lifespan Waiver application, while several concerns remain. These include confusion about how the waiver will roll out; financial implications and risks; the SIS-A assessment and appeals process; how person-centered planning (PCP) and case management will function within the Lifespan system; workforce shortages; accountability and outcomes; and the system’s capacity to implement these changes alongside the existing structure.
Cullen shared that, while there is much to applaud, this meeting was intended as an opportunity to openly discuss concerns prior to public comments being due on May 13 at 11:59 p.m. He noted that Derek and Sara may be able to answer questions in real time during the discussion.
Begin Presentation: (links are provided below) Kim provided an overview of the proposed Lifespan Waiver application using a PowerPoint presentation and introduced co-presenters Carrie and Rachel. Carrie and Rachel each shared information about themselves and offered commentary throughout the presentation based on their knowledge, experience, and perspectives.
Kim emphasized the importance of stakeholder engagement while the proposal remains in draft form. Kim noted this is a critical opportunity for individuals, families, providers, and other stakeholders to discuss what they support, identify potential risks, and share how the proposed changes may impact their lives and services. She stressed that lived experience is essential in shaping the future of the system and encouraged participants to provide feedback during the public comment period.
Rachel shared that the Developmental Disabilities Council has been involved in the process for more than three years and noted she has never seen another service proposal with this level of stakeholder input or revisions made in response to community feedback. She described the Lifespan Waiver as a potentially transformative next step in the evolution of home and community-based services (HCBS), offering a broad and flexible array of supports. At the same time, Rachel expressed concerns regarding administrative complexity and ongoing workforce shortages, which she believes continue to impact the overall service system and are not fully addressed within the waiver proposal. She also noted that national partners and individuals connected to the Centers for Medicare and Medicaid Services (CMS) are closely following Maine’s work because of its innovative approach, and she emphasized the importance of continued stakeholder involvement during future rulemaking and implementation discussions.
Kim reviewed the PowerPoint presentation, which included an overview of the Lifespan Waiver, key proposed changes, why the proposal matters, how it may affect individuals and families, and instructions for submitting public comments. Participants were encouraged to review the concise summary (The Plain Language Version) of the proposal, which may be easier to navigate than the full 334-page application, as well as additional resources including a recent DHHS webinar recording and Lifespan language summary materials.
Kim emphasized that the Lifespan Waiver represents a significant, once-in-a-generation systems change, making it especially important for individuals, families, and providers to share their experiences and perspectives. She stressed that lived experience is essential in helping shape the future of services and encouraged participants to use their voices during the public comment period. Kim also referenced a recent DHHS webinar (held on Friday, 5/8/26) and encouraged participants to review the webinar recording and the Lifespan language summary document to better understand the proposal.
Helpful links:
- 5.12.26_lifespanwaiverupdated_2.pptx
- 5.12.26lifespanwaiver6issuesccme.docx
- OADS Lifespan Waiver Overview Webinar (5.8.2026)
- Plain Language Version Lifespan Waiver Application Summary
- HCBS Lifespan Project Website
- MaineCare Notice of Agency Waiver Application-Details on submitting comments
- SIS-A Implementation Project
- Children's Behavioral Health Settlement Agreement page
Discussion/Questions/Comments:
Derek, during the presentation, noted that some slides contained inaccuracies, encouraging participants to refer to official DHHS materials, including the SIS-A presentation and Plain Language resources, for the most accurate information (see links above). He clarified that SIS-A is an independent assessment required by CMS used to determine tiered levels of support and not to make decisions about services, staffing, or funding. He explained that person-centered planning (PCP) identifies individual goals and determines the supports, service settings, and staffing needed to meet those goals, while SIS-A informs level of need only. Derek also noted that some terminology in the presentation should be corrected, including replacing references to “budget” with “tiered payment levels,” and suggested removing or revising certain slides. He offered to work with Kim to correct the inaccuracies in the PowerPoint presentation. He encouraged participants to submit public comments if any part of the proposal is unclear, emphasized the importance of reviewing official DHHS resources and webinar materials, and underscored the value of public input in shaping the final proposal before leaving the meeting early.
Carrie noted that the Lifespan Waiver begins engagement considerations around age 14 and was intended not to disrupt children’s services or transitions into adult services, but rather to better prepare individuals. She stated that recent eligibility changes related to children’s services (Sections 28 and 13 TCM) were driven by the Department of Justice (DOJ) settlement, but it is still unclear how these changes will impact youth ages 14–17 within the Lifespan Waiver. She also noted that there has been no clear response yet from the responsible offices regarding how these changes will affect children and young adults. (A link has been added above for anyone interested in the DHHS website page regarding this settlement).
Kim acknowledged concerns raised about system stability and how multiple changes may interact. She also asked for clarification on SIS-A from Carrie later in the discussion. Kim noted ongoing questions about oversight and emphasized interest in stronger accountability measures to ensure unmet needs are identified and tracked. She also referenced concerns about administrative structure and the importance of ensuring resources remain focused on direct services.
A parent asked why eligibility requirements are changing.
Carrie responded that the changes are related to requirements under a DOJ settlement agreement, which is contributing to broader system reforms that may include adjustments to eligibility criteria. She noted that these changes may impact the Lifespan waiver but are not driven by the waiver itself.
Bonnie stated that the Lifespan Waiver represents the most significant systems change since the Pineland Consent Decree (1978), describing it as affecting more individuals than that earlier reform. She emphasized that systems change is difficult but necessary and stressed the importance of maintaining a person-centered approach. She raised concern that administrative growth historically expands during system transitions and emphasized that funding should prioritize direct services. She also noted that SIS-A is only a tool and does not reflect the full picture of a person, highlighting the importance of PCP in understanding individual needs. She expressed concern about tiered systems and the risk of unintended consequences if changes are not carefully implemented.
A parent asked about the purpose of SIS-A.
Derek explained that CMS requires an independent assessment process, and SIS-A fulfills that requirement. He reiterated that SIS-A does not determine services, staffing, or funding.
The same parent then asked how discrepancies between SIS-A results and individual needs are resolved.
Derek explained that differences are addressed through the person-centered planning process, where the team identifies supports, services, staffing needs, and settings based on the individual’s goals and preferences.
Kim noted that there remains confusion in some areas of the application and reiterated the importance of clear public input. She encouraged participants to continue reviewing available materials and submit comments on unclear sections.
A self-advocate expressed appreciation for the presentation and reflected on the historical significance of system change. She emphasized the importance of dignity, person-first approaches, and ensuring individuals do not fall through gaps in services. She raised concerns about administrative growth and stressed that funding should prioritize direct support services. She noted that SIS-A does not capture the full complexity of a person’s needs and emphasized the importance of PCP in understanding the whole individual. She also expressed concern about tiered structures and system complexity.
Bonnie added historical context, noting the Pineland Consent Decree and emphasizing that administrative promises and structures often shift across administrations. She raised concerns about increasing bureaucracy and stressed the importance of ensuring that legislative mandates support direct services rather than administrative expansion. She encouraged continued public engagement at every opportunity.
Nancy Cronin expressed concern about changes in children’s services eligibility and how this will interact with the Lifespan Waiver. She raised concerns about case management, including the potential need to choose between service systems, and emphasized that these details need to be clearly addressed in rulemaking. She stressed the importance of ensuring children and adults receive needed services without gaps or barriers. She also raised concerns about system silos and transitions between children’s and adult services.
A provider noted that SIS-A is required by CMS and tied to tiered rates, which are a foundational element of the waiver. She acknowledged the complexity of the system and stated that while there is much to appreciate, it is difficult to fully understand due to its layered structure.
A parent raised concerns about system complexity and questioned how the model will function given expanded eligibility and added administrative requirements. He asked whether other systems, such as the Department of Education and Individual Education Plans (IEP), have been included in planning discussions and expressed uncertainty about how coordination will occur across systems. He also questioned whether the proposal is cost-neutral and how it will be implemented at scale.
Carrie responded that there is limited coordination between systems such as the Department of Education and DHHS and emphasized that families already face significant challenges navigating transitions from children’s to adult services. She noted that system silos remain a major barrier and contribute to gaps in care.
A parent shared concerns about the person-centered planning (PCP) process, noting that in her experience as a parent/guardian, it has not consistently identified the level of support needed to achieve individual goals. She emphasized the importance of ensuring that PCP is implemented effectively, that all steps are followed, and that supports are responsive to fluctuating needs. The parent also raised concerns about how SIS-A will account for changing conditions over time. In addition, she expressed concern that some case managers/Community Resource Coordinator’s may not fully understand the PCP process which could result in missed steps that are essential for effective planning and service delivery.
A parent shared her perspective, noting both positive aspects and concerns. She described past experiences with Section 21 services and emphasized the ongoing stress families experience in maintaining eligibility and services. She expressed concern that repeated reassessments and system changes create instability and anxiety. She urged caution in implementing the Lifespan Waiver too quickly and suggested addressing existing issues in current systems first to reduce fear of service loss.
Rachel expressed appreciation for the breadth of perspectives shared and noted that historical context is important to understanding current concerns. She reiterated concerns about system silos and challenges families face navigating services, particularly across diagnoses and transitions.
Carrie added that early identification and intervention systems in Maine remain fragmented, particularly across education and early childhood systems. She noted that lack of coordination has contributed to service gaps for children and young people and emphasized that improving early supports is essential to long-term system success.
Kim concluded by emphasizing that strengthening supports across the lifespan begins with ensuring children’s systems are effective, as this directly impacts adult services and outcomes.
Nancy added that broader system shifts and silos remain a major concern and noted that the pace and scale of change is challenging for families and providers alike.
A self-advocate reflected on the influence of changing political priorities and expressed appreciation for the collaborative nature of the current discussion.
Bonnie emphasized the importance of cross walking existing rules and mandates and noted that technology and data requirements should ultimately support service development. She encouraged continued engagement and participation in the public comment process.
Kim encouraged participants to continue submitting comments and emphasized the importance of public input.
Cullen closed the discussion by thanking presenters, Kim, Rachel, and Carrie and included Derek for his clarifications, and participants for their thoughtful engagement. He emphasized that public comments are due by May 13 at 11:59 p.m. and encouraged individuals to submit concerns, questions, and feedback as part of the process. He noted that all voices are important and thanked everyone for participating in the presentation and discussion.
End Presentation.
Service Updates:
DHHS, Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Sara Fleurant shared that the most significant update from OADS relates to the Lifespan Waiver application and information previously provided through the presentation and additional information provided by Derek. She encouraged participants to review available OADS resources, including the webinar, Plain Language Version, FAQ’s, and other supporting materials designed to help individuals understand the history, current status, and public comment process (see links provided above). She also strongly encouraged submission of public Comments.
Sara also explained that the 811 program is a partnership between the State of Maine and the U.S. Department of Housing and Urban Development (HUD), designed to support individuals with disabilities in accessing integrated, affordable housing. She noted that program details, including eligibility criteria and application information, are available on the DHHS website. She also referenced Housing Support Funds as an additional resource to help eligible individuals with housing-related costs. Training and informational resources for both programs are available online at: https://www.maine.gov/dhhs/oads/get-support/housing-services.
Sara noted that OADS continues to accept and process applications for Housing Support Funds, which assist individuals with intellectual disabilities or autism in covering housing-related expenses. Funds are available on a one-time basis with potential for second time support, and may be used for rent, security deposits, or utilities. Support may be provided to individuals living in apartments, privately owned homes, or group home settings. Eligible applicants include individuals receiving services through the Section 21 Comprehensive Waiver and Section 29 Support Waiver. Applications should be completed using the Housing Support Funds application and submitted to [email protected].
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) (can we work on this<- www.maine.gov/dhhs/obh/support-services/childrens-behavioral-health - No formal update was provided at this meeting. A self-advocate noted the importance of maintaining strong communication and engagement with this system area given its relevance to children’s services and transitions. It was suggested that follow-up be made with a new contact to support ongoing coordination and input from the agency. Chris McLaughlin was identified as a potential point of contact (Thank you Margaret!): [email protected]
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr - no update provided.
DOE, Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed -
No update provided
Disability Rights Maine - DRM (link to website)
Megin Salvin reviewed the application and shared that she is developing written comments for Disability Rights Maine and will share with the group. She also noted that work related to developmental disabilities rights education is ongoing, including community support training activities such as the new Rights Jeopardy game which will include statewide tournaments designed to reinforce knowledge and engagement across the system.
A self-advocate shared that she and her husband, who is blind, have been invited to participate in testing voting accessibility machines with the Secretary of State’s office. She expressed appreciation for the opportunity and enthusiasm about the effort to improve accessibility in voting systems. Margaret was also appreciated for her efforts in advocacy.
Federal & Housing Updates:
Federal Budget Update of Note:
Cullen reported that the Department of Housing and Urban Development’s (HUD) budget has been funded, though the reach of the limited funds is still unclear. He noted that the most significant concern ahead is the potential for impending Medicaid cuts, which could have significant implications for Maine, particularly following November elections. He shared that as the timeline approaches the Coalition will plan a presentation, likely in September, with Michele Probert, Director of MaineCare Services, DHHS, to discuss how Maine may respond and navigate these challenges.
Bonnie referenced proposed federal Medicaid policy changes discussed in the context of a federal budget reconciliation bill (sometimes informally referred to in public discourse as the “Big Beautiful Bill”). She expressed concern about potential changes to eligibility redetermination requirements, including more frequent Medicaid re-determination for individuals with intellectual and developmental disabilities.
State Legislative Updates
Cullen reported that there were no formal updates from the Legislature at this time. Cullen noted that the State Legislature is currently in a quiet period but gearing up for the upcoming election cycle, with approximately one-third turnover expected and new bills anticipated to be introduced around December. He also noted that the general election is scheduled for November 3rd.
It was noted that Senator Susan Collins is preparing legislation to exempt individuals with IID/DD from every 6 months Medicaid re-certification requirements, in an effort to reduce administrative burden and improve continuity of coverage. People can write to Senator Collins to support the bill when it is finished. Advocacy efforts will be important to support advancement of this bill and that individuals will be able to submit letters of support once the legislation is finalized. It was noted that MACSP is seeking personal stories, ideas, and talking points from individuals and families to help inform and strengthen that advocacy work.
Cullen closed the meeting by once again acknowledging the Coalition’s 20-year anniversary and the ongoing value of coming together to build connections, learn about systems, and help influence change. He thanked participants for their engagement and for working through complex information in real time, as well as for the opportunity to have an open forum where DHHS and other partners share updates and respond to questions. Cullen noted that significant changes are underway and encouraged participants to continue using their voices in the public comment process. He ended by wishing everyone a happy anniversary and thanking all for their continued participation and commitment.
Coalition Website - MAINE COALITION FOR HOUSING & QUALITY SERVICES
Next Meeting: June 8, 2026, 12:00 - 2:00.
Featured Speaker and Topic: TBD.
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 meeting.