November 10, 2025
Minutes
Minutes
Attendees via Zoom: Julianne Zaharis, Amanda Parker, Brad Peck, Darla Chafin, David Cowing, Dawn Cedrone, Debbie Dionne, Derek Fales, H Goodwin, Haley Michaud, Ian Teague, irussell, Jamie Whitehosue, Kate McElligott, Keri Lopes, Kim Humphrey, Laura Cordes, Libby Stone-Sterling, Lily Lin, Liz Burgess, Lucas Cuellar, Margaret Cardoza, Marti Howard, Melissa Bliss, Mindy Ward, Paula Bush, Peter Stuckey, Robin Levesque, Sara Fleurant, Stacy Lamontagne, Trisha Barker, Brenda Smith, Cullen Ryan, Vickey Merrill, and possibly a few people who joined after the meeting began and left prior to the conclusion of the meeting.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Julianne Zaharis, Community Work Incentives Coordinator (CWIC), Maine Medical Center. Topic: An overview and update on the Maine Benefits Counseling Services Program.
Cullen: Today I am pleased to welcome Julianne Zaharis, Community Work Incentives Coordinator (CWIC) with Maine Medical Center who will be providing an overview and update on the Maine Benefits Counseling Services Program. There are a lot of ways in which people can work and earn money without affecting their benefits, and disseminating this information is very important, now more than ever. And people gain a lot more than just wages from employment and volunteer opportunities. Julianne is excellent about helping people understand exactly how they can meet all their employment goals while maintaining their benefits and has been a huge source of information for this Coalition over the years. Thank you for being here, Julianne!
Julianne Zaharis: Thank you for having me! I very much appreciate this opportunity!
Begin Presentation (Click here for the presentation).
Julianne: Benefits Counseling Services (BCS) is part of Maine Medical Center’s Vocational Services – which is different from and not part of Maine’s Vocational Rehabilitation (VR) services, though we do work with them. There are approximately 72,000 work-age Mainers receiving a Social Security Benefit – and there are six (6) Benefits Counselors. Our services are all grant-funded and there are no costs for the service. We are trained by Social Security, DHHS, and other benefit agencies regarding how making money affects benefits.
We compare ourselves to a GPS system helping people navigate. Someone will ask “I receive disability benefits. I'm working. This is what I'm doing. Who do I need to let know that I'm working? What are the reporting requirements? What’s going to happen to my benefits?” We work as navigators providing personalized, individualized services to make sure it makes sense for people to work. This is our key job. We want to make sure people will have more money overall and that they will not lose benefits. These benefits include Social Security, health insurance, housing, SNAP, TANF etc. Whatever they start out with.
Unfortunately myths too often influence people’s desire to work, so dispelling myths with facts is important (see slide 4 of the presentation).
We are talking about someone's financial security. The Social Security benefit and the supplemental benefits, such as SNAP or TANF, all deal with someone’s financial security. This is also about health insurance. If I were to lose my job today my top two concerns would be my financial security and my health insurance. For people with disabilities, it’s often the opposite – if they go to work, they could lose their financial security and their health insurance.
Working is also so much more than money. The vast majority of folks I work with are earning around $500 per month in wages, which is great, but the non-financial benefits they receives are immense.
Employers and the workforce are becoming more open and welcoming to individuals with disabilities, with integrated, competitive employment. This is standing side by side with somebody who doesn't have aid, who maybe doesn't have a disability or doesn't identify with a disability, receiving the same amount of money.
There's a specific population that is going to be introduced to the work rules, or the work requirements, attached to Medicaid and SNAP and some of the other programs. These individuals are considered “Able-bodied adults without dependents”. There is, to date, an exemption for a medical exemption for folks who are considered disabled. So, working is not a requirement, but it absolutely is an option.
The services that we provide are personalized and individualized and they focus on the individual’s goals, so that they can feel empowered and feel like they have control over their lives. We assist with understanding what the rules are, what the incentives are, what the safety nets are, and how these apply to people on an individual basis to best support their goals.
The different types of Disability and Social Security benefits (slide 7 of the presentation) can be very confusing and is one reason it can be helpful to meet with a Benefits Counselor, who understands all of this information and can help people make informed choices.
The most common concern is if people can keep their health insurance. There are specific rules regarding MaineCare eligibility, including Working Disabled MaineCare (slide 8 of the presentation). Helping people figure out all of the rules about income and how it affects health insurance eligibility is something that my team and I can tell you down to the exact dollar amount.
We also have established relationships so that if problems occur (people receive scary letters from Social Security or MaineCare, etc.), we can help rectify the situation that's occurred. There have also been times when someone will say “But Julianne, you said this!” so we can also help figure out miscommunications and/or misunderstandings.
Our referral packet is available on our website. We have an office in Portland on Washington Ave. Since our program is grant-funded our ability to travel has been limited. However, an accommodation can be requested and we can accommodate by meeting via phone, Teams, Zoom etc.
If you want more foundational knowledge before going through the referral process, we have a Fact Sheets & Videos drop-down on our website that may be helpful. You can also join our Mailing List!
Cullen: Thank you, Julianne, for all of this information!
Discussion:
-A former case manager stated that someone she was working with got married to someone without a disability and received notice that she would lose MaineCare. She was able to continue to get MaineCare by applying for the Long-Term Benefit.
Julianne: We’ve heard about the “marriage penalty” a lot, but this is a great example of when there are other avenues to meet needs. For anyone receiving any waiver services there is a back-door entrance into MaineCare which is “Long-Term Care” under OADS. If someone initially loses MaineCare, usually there can be a plan b through this. MaineCare has more than 30 different categories. If one initial door is closed (someone gets married, and the spouse’s income pushes someone off MaineCare) there are other avenues for retaining MaineCare. If someone loses their disability benefit, DHHS can do its own disability review and deem the person “disabled” for the purposes of MaineCare.
-It was asked if there’s an ideal time for someone to reach out for services.
Julianne: Yes! Ideally, if possible, the referral should come in before someone starts working so we can be prepared and have all our ducks in a row. However, we often hear “I started working and I haven't reported anything to Social Security or DHHS. Am I going to be in trouble?” First and foremost, no, it happens. You don't know what you don't know. Pre-employment is the best time to dive in, but we’re happy to assist in many circumstances.
Cullen: Thank you for this, Julianne, it was wonderful. This is very valuable and useful information that people will be able to refer back to in the future. Thank you for bringing us up to speed and helping people understand that with some support, people can work and retain their essential benefits. Well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Derek Fales – Acting Associate Director:
Licensing Rule Updates: The Office of Aging and Disability Services (OADS) has worked towards finalizing responses to the Home and Community Support Services (Chapter 108) licensing regulation in collaboration with the Division of Licensing and Certification and has developed a communication and implementation strategy.
HCBS Update: OADS continued oversight of Home and Community-Based Services, delivering technical assistance across residential, day, and employment services, and issuing notices of deficiency and plans of correction to strengthen providers’ capacity to deliver high-quality supports for individuals with intellectual disability, autism, other related conditions, and brain injury.
Housing Update: In support of the Department’s efforts to ensure individuals with disabilities can choose where they live, OADS partners with MaineHousing to oversee the Section 811 Project Rental Assistance (PRS) Program. Authorized by the Frank Melville Supportive Housing Investment Act of 2010 (P.L. 111-374), this program creates housing opportunities for extremely low-income individuals with disabilities at nine properties across the state.
Section 29 Waiver Application Update: OADS will be responding to CMS informal requests for additional information for requested clarification and changes for the Section 29 Waiver application to align with CMS technical requirements, along with continued work towards aligning requirements of the Lifespan waiver with the same technical requirements that Section 29 must follow. The Section 29 waiver is to be renewed for January 2026.
Other Updates: OADS also successfully hosted the State of the States in Brain Injury conference for the National Association of State Head Injury Administrators, bringing national experts, state leaders, and providers together to advance services for people with brain injury.
Over the past month, OADS district quality teams addressed complaints regarding agency services, advanced case resolutions, and initiated corrective action where appropriate. Referrals were received from Adult Protective Services (APS). Caseworkers maintained quarterly meetings with agencies and triaged Reportable Events as needed. The team finalized plans to implement event triage in the Evergreen system—a key step toward certification by the Centers for Medicare & Medicaid Services (CMS)—and participated in Tableau training to support the forthcoming Events Dashboard being developed by Passerelle, targeted for July 1, 2026. The Crisis Services team is also delivering START Coordinator training, with the START model which will be embedded within OADS Crisis operations and extended to agencies supporting individuals with complex behavioral needs.
-A self-advocate thanked OADS for all of its work. She thanked OADS for helping people in the community about reporting dangerous situations. She stated that the best way for people in the community to report concerns regarding Home and Community Based Providers is through the Department’s online complaint form. She stated that having people understand that these agency homes are people’s homes is important. She asked what was going on with transportation.
Derek: Thank you for all of your communication with community members etc. It really does take a village. OADS continues to work with our quality framework and compliance with the Access Rule, which requires states to collect and then report around certain things like complaints and grievances, with particular attention to abuse, neglect, and exploitation. I’m not the best person to speak about transportation. What I do know is that the broker that is currently going through bankruptcy court continues to provide rides and support transportation. I’m not aware of any significant disruption currently, but that’s not to say there won’t be an impact in the future.
-A self-advocate asked about the Section 811 Project Rental Assistance Program and its waitlist.
Sara Fleurant: One of the things that’s unique about Section 811 Project Rental Assistance is that there’s no application. If someone is interested in getting on the waitlist they would reach out to our team at OADS and get them on the waitlist in real-time. At the time when someone receives an offer letter for an apartment, that’s when they do the application for that specific property. You can feel free to reach out directly to me: [email protected].
Cullen: Thank you for both being here and for all of this information!
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: I have spoken about our Pathways 2 Partnership (P2P) grant here previously. We included Benefits Counseling Services to young people and their families as part of that project. We are dedicated to ensuring that young people and their families have access to this information early so they can make informed decisions. Under our grant we're going to be piloting allowing people to get benefits counseling services without already receiving Social Security benefits. This is a small subset of people, but we’re hoping that getting the information out earlier might help with trajectories of what people are thinking about for employment.
The Bureau of Rehabilitation Services houses the state ADA Accessibility Coordinator. Jason Angel, in our office, is out and about meeting with all different state agencies, and their ADA coordinators. He also provides training and technical assistance and answers questions from the public about access to state services and programs. He's a fantastic resource and a person with lived experience who has been a tremendous addition to our team here. He can be reached via email: [email protected] it's a generic email, but it goes to him.
As a follow-up to last month, we continue to have no VR waitlist and are able to provide services statewide, both virtually and in-person.
Cullen: Thank you very much, Libby!
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM)
Lucas Cuellar: The big news I have is a personal update: I will be transitioning to a different role, so there will be a different DRM representative at these meetings, likely Staci Converse. I will be transitioning to the Brain Injury Advocacy Role, so I may pop into these meetings from time to time.
October is the end of the fiscal year, and we’ve done a lot throughout the year. We’ve made a concerted effort to get out into the community, monitoring homes, and seeing what’s going well for people, what could be improved upon, etc.
-A self-advocate asked about the future of their funding that could be in jeopardy.
Lucas: My understanding is that with the One Big Beautiful Bill Act there could be cuts not just for the disability rights organizations, but in several other areas including Head Start programs.
Cullen: It has been wonderful having you here, Lucas, and we wish you luck in your new role. I hope we continue to see you here!
Federal & Housing Updates:
Cullen: The biggest update is around the federal government shutdown, which is in its 41st day – the longest in history. There is a renewed effort to pass a short-term CR and reopen the government. After much negotiation, on 11/9 the Senate advanced a funding bill with a procedural vote. The bill now faces votes for passage and must be taken up by the House to reopen the government. The bill includes three full-year appropriations bills to fund some federal departments through the end of the fiscal year, money to fully fund SNAP, and reverses the Administration’s shutdown layoffs. The CR does not include extending Affordable Care Act (ACA) subsidies, but a promise to vote on doing so once the government reopens. The Senate is preparing to advance FY 26 spending bills, including T-HUD, once the shutdown concludes.
We have been following the current shutdown’s potential effect on SNAP closely. 169,812 households in Maine receive SNAP benefits: with more than half of these households including a person with a disability, 43% including an older adult, and more than 1/3 including children. There were two Federal court rulings on 10/31 which directed the US Department of Agriculture to release emergency contingency funds for SNAP. The Administration stated on Monday 11/3 that it would authorize partial (half) SNAP payments using contingency funds. The plaintiffs in the lawsuits went back to court inquiring if partial SNAP payments complied with the Court’s ruling and the Judge found it did not and that full SNAP payments must go out during the shutdown. On 11/7 the Administration announced it would appeal the ruling. Later that same day USDA announced they will be issuing full SNAP payments and Governor Mills announced full SNAP benefits would go out 11/10-11/14 as scheduled. Then the Supreme Court granted a temporary stay and subsequently USDA ordered states to immediately reverse all actions to provide full SNAP benefits. Maine did not reverse this, and full benefits went out as scheduled.
As this group knows from last month, the Administration also began laying off federal workers during the shutdown. However, a judge has issued a temporary restraining order regarding this practice and the Senate’s CR would reverse these layoffs.
We are closely following everything going on at the federal level 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 regular updates and action alerts.
Previous updates that we’re still following:
Medicaid cuts remain a large threat, specifically and most recently in the Budget Reconciliation Bill (HR 1, One Big Beautiful Act) which was signed by the President on 7/4 (see below for more information). The entire Maine Delegation attempted to thwart efforts to include cuts to Medicaid in this reconciliation bill by voting against it. The cuts to Medicaid and SNAP will take effect in the fall of 2026, right around the Mid-Term Elections.
Previous Item Reconciliation Bill, HR 1, One Big Beautiful Bill Act: On 7/4 President Trump signed HR 1 into law. The bill cuts over $1 trillion in funding for safety net programs, including Medicaid and the Supplemental Nutrition Assistance Program (SNAP). Even with these cuts, the nonpartisan Congressional Budget Office (CBO) estimates the bill will add over $3.9 trillion to the federal deficit over the next decade.
-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.
-SNAP:
Executive Orders: No new updates. Previous update:
President Trump initiated a series of Executive Orders (EOs) which, if implemented/upheld by the courts, could make it more difficult for everyone to access to an affordable, accessible home. Per NLIHC, the new Administration’s first actions include:
House & Senate FY 26 Budgets (including T-HUD): Updates: The Senate is preparing to advance FY 26 spending bills, including T-HUD, once the shutdown concludes.
Senate THUD Budget: No new updates. Previous updates: The Senate passed its FY 26 THUD spending bill that would provide $73.3 billion for HUD, significantly more than the $67.8 billion provided for HUD in the House’s draft FY26 spending bill. Per NLIHC, like the House’s FY26 THUD spending proposal, the Senate’s proposal rejects the funding cuts and policy proposals in the Trump administration’s FY26 appropriations request, which would have overhauled and cut funding for rental and homelessness assistance programs. The bill includes:
House FY 26 THUD Budget: No new updates. Previous updates: On 7/17 the full House Appropriations Committee passed the FY 26 THUD spending bill. After accounting for housing revenues, $96.8 billion is provided for federal transportation and housing programs, a cut of nearly $6 billion, or 6%, from 2025. The proposal would fund HUD at $67.8 billion, a decrease of $939 million from the $74.6 billion provided for HUD programs in FY25. Though this level of funding is not sufficient to maintain investments in affordable housing programs, the bill also largely rejects many of the cuts the President called for in his FY 26 spending request for HUD. Per NLIHC the bill provides the following:
Federal Bills: No new updates. Previous updates:
State Legislature Update
Laura Cordes – MACSP (Maine Association of Community Service Providers): I would be happy to go over the list of bills carried over, that made it through Legislative Council, etc. in February when we will know more, and continue to keep you all updated throughout the Session.
Cullen: Thank you, Laura. That would be great!
Laura: The Second Session, or the “short session”, is scheduled to start 1/7/26, and the statutory adjournment date (the 3rd Wednesday of April) is scheduled for 4/15/26. Cloture occurred September 26, 2025. Only bills deemed to be “emergency bills” and bills put forth by the Governor can be considered, along with bills that were carried over from the previous session. The Legislative Council met to determine what bills will move forward and be considered in the Second Session. The bills considered and their outcomes is available online.
As this group knows, there are a whole host of bills that either didn’t move through the House and Senate for votes for enactment or didn’t get funded off the Table. The vast majority of these bills were carried over into the next Legislative Session. And there are some bills that were enacted and sent to the Governor, but since the Legislature adjourned Sine Die, they were held by the Governor and will become law when the Legislature next convenes for at least three days. This will likely happen in January. We are expecting a Supplemental Budget, which the Governor is expected to release, also in January.
Cullen: Thank you, Laura! This is a really good time to reach out to Legislators, especially ones in your district, to tell your story and advocate for necessary resources to meet the needs of people with ID/DD in Maine. Thank you all for your time, effort, and advocacy for people with ID/DD in Maine. I hope you will continue to advocate and raise your voice in the Second Session.
Other Business:
-A self-advocate stated that she went to her polling place with her husband who is legally blind. They forgot to give him the second ballot, and he almost left without voting on the second ballot. That was just one complication, and they will be reporting their experience to the Secretary of State.
Cullen: I want to acknowledge Peter Stuckey who’s in attendance today. He was instrumental in the development of the Section 29 Waiver. He really listened to us and the needs of people with disabilities in Maine and was a fantastic legislator. Thank you for being here, Peter, and for all you have done for people with disabilities in Maine!
-A parent who recently lost her daughter and described herself as a “former parent”, who is also a long-time member of the Coalition, stated that with her own medical issues she’s going through similar experiences that many loved ones have gone through, and the frustration and isolation is real. She stated that the general population is feeling the same pressures we have been for years, so in some ways that’s helpful to our cause. In many ways we’ve made progress, but in many ways we have not. She stated she’s not sure how much longer she can stay in the state and doesn’t feel like she has the resource she used to have, the ones needed for parents and family members.
Cullen: I’m sorry to hear that and I hope you stay in Maine! I want to urge you to stay involved and connected with this group. You are a fierce advocate, and we are all better for you being here and are grateful for your decades of advocacy.
Cullen: We do slowly move the needle by coming together, sharing with each other, learning to trust one another, and hearing from all parts of the whole system through direct conversations. I appreciate you all taking time each month to do that and bring our state closer together and pointed in the right direction. I want to wish everyone a happy and joyful Thanksgiving. I hope everybody gets some time with family. Thank you all for what you do.
Cullen: If you know people who could benefit from being here, I encourage you to reach out and have them forward their email to Vickey [email protected] or join by going on the website.
The next meeting will be on Monday, December 8, 2025, 12-2:00pm, via Zoom*
Featured Speaker: Roger Bondeson, Associate Director, Division of Operations, DHHS-Office of MaineCare Services.
Topic: An Update on Non-Emergency Transportation.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2026 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Julianne Zaharis, Community Work Incentives Coordinator (CWIC), Maine Medical Center. Topic: An overview and update on the Maine Benefits Counseling Services Program.
Cullen: Today I am pleased to welcome Julianne Zaharis, Community Work Incentives Coordinator (CWIC) with Maine Medical Center who will be providing an overview and update on the Maine Benefits Counseling Services Program. There are a lot of ways in which people can work and earn money without affecting their benefits, and disseminating this information is very important, now more than ever. And people gain a lot more than just wages from employment and volunteer opportunities. Julianne is excellent about helping people understand exactly how they can meet all their employment goals while maintaining their benefits and has been a huge source of information for this Coalition over the years. Thank you for being here, Julianne!
Julianne Zaharis: Thank you for having me! I very much appreciate this opportunity!
Begin Presentation (Click here for the presentation).
Julianne: Benefits Counseling Services (BCS) is part of Maine Medical Center’s Vocational Services – which is different from and not part of Maine’s Vocational Rehabilitation (VR) services, though we do work with them. There are approximately 72,000 work-age Mainers receiving a Social Security Benefit – and there are six (6) Benefits Counselors. Our services are all grant-funded and there are no costs for the service. We are trained by Social Security, DHHS, and other benefit agencies regarding how making money affects benefits.
We compare ourselves to a GPS system helping people navigate. Someone will ask “I receive disability benefits. I'm working. This is what I'm doing. Who do I need to let know that I'm working? What are the reporting requirements? What’s going to happen to my benefits?” We work as navigators providing personalized, individualized services to make sure it makes sense for people to work. This is our key job. We want to make sure people will have more money overall and that they will not lose benefits. These benefits include Social Security, health insurance, housing, SNAP, TANF etc. Whatever they start out with.
Unfortunately myths too often influence people’s desire to work, so dispelling myths with facts is important (see slide 4 of the presentation).
We are talking about someone's financial security. The Social Security benefit and the supplemental benefits, such as SNAP or TANF, all deal with someone’s financial security. This is also about health insurance. If I were to lose my job today my top two concerns would be my financial security and my health insurance. For people with disabilities, it’s often the opposite – if they go to work, they could lose their financial security and their health insurance.
Working is also so much more than money. The vast majority of folks I work with are earning around $500 per month in wages, which is great, but the non-financial benefits they receives are immense.
Employers and the workforce are becoming more open and welcoming to individuals with disabilities, with integrated, competitive employment. This is standing side by side with somebody who doesn't have aid, who maybe doesn't have a disability or doesn't identify with a disability, receiving the same amount of money.
There's a specific population that is going to be introduced to the work rules, or the work requirements, attached to Medicaid and SNAP and some of the other programs. These individuals are considered “Able-bodied adults without dependents”. There is, to date, an exemption for a medical exemption for folks who are considered disabled. So, working is not a requirement, but it absolutely is an option.
The services that we provide are personalized and individualized and they focus on the individual’s goals, so that they can feel empowered and feel like they have control over their lives. We assist with understanding what the rules are, what the incentives are, what the safety nets are, and how these apply to people on an individual basis to best support their goals.
The different types of Disability and Social Security benefits (slide 7 of the presentation) can be very confusing and is one reason it can be helpful to meet with a Benefits Counselor, who understands all of this information and can help people make informed choices.
The most common concern is if people can keep their health insurance. There are specific rules regarding MaineCare eligibility, including Working Disabled MaineCare (slide 8 of the presentation). Helping people figure out all of the rules about income and how it affects health insurance eligibility is something that my team and I can tell you down to the exact dollar amount.
We also have established relationships so that if problems occur (people receive scary letters from Social Security or MaineCare, etc.), we can help rectify the situation that's occurred. There have also been times when someone will say “But Julianne, you said this!” so we can also help figure out miscommunications and/or misunderstandings.
Our referral packet is available on our website. We have an office in Portland on Washington Ave. Since our program is grant-funded our ability to travel has been limited. However, an accommodation can be requested and we can accommodate by meeting via phone, Teams, Zoom etc.
If you want more foundational knowledge before going through the referral process, we have a Fact Sheets & Videos drop-down on our website that may be helpful. You can also join our Mailing List!
Cullen: Thank you, Julianne, for all of this information!
Discussion:
-A former case manager stated that someone she was working with got married to someone without a disability and received notice that she would lose MaineCare. She was able to continue to get MaineCare by applying for the Long-Term Benefit.
Julianne: We’ve heard about the “marriage penalty” a lot, but this is a great example of when there are other avenues to meet needs. For anyone receiving any waiver services there is a back-door entrance into MaineCare which is “Long-Term Care” under OADS. If someone initially loses MaineCare, usually there can be a plan b through this. MaineCare has more than 30 different categories. If one initial door is closed (someone gets married, and the spouse’s income pushes someone off MaineCare) there are other avenues for retaining MaineCare. If someone loses their disability benefit, DHHS can do its own disability review and deem the person “disabled” for the purposes of MaineCare.
-It was asked if there’s an ideal time for someone to reach out for services.
Julianne: Yes! Ideally, if possible, the referral should come in before someone starts working so we can be prepared and have all our ducks in a row. However, we often hear “I started working and I haven't reported anything to Social Security or DHHS. Am I going to be in trouble?” First and foremost, no, it happens. You don't know what you don't know. Pre-employment is the best time to dive in, but we’re happy to assist in many circumstances.
Cullen: Thank you for this, Julianne, it was wonderful. This is very valuable and useful information that people will be able to refer back to in the future. Thank you for bringing us up to speed and helping people understand that with some support, people can work and retain their essential benefits. Well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Derek Fales – Acting Associate Director:
Licensing Rule Updates: The Office of Aging and Disability Services (OADS) has worked towards finalizing responses to the Home and Community Support Services (Chapter 108) licensing regulation in collaboration with the Division of Licensing and Certification and has developed a communication and implementation strategy.
HCBS Update: OADS continued oversight of Home and Community-Based Services, delivering technical assistance across residential, day, and employment services, and issuing notices of deficiency and plans of correction to strengthen providers’ capacity to deliver high-quality supports for individuals with intellectual disability, autism, other related conditions, and brain injury.
Housing Update: In support of the Department’s efforts to ensure individuals with disabilities can choose where they live, OADS partners with MaineHousing to oversee the Section 811 Project Rental Assistance (PRS) Program. Authorized by the Frank Melville Supportive Housing Investment Act of 2010 (P.L. 111-374), this program creates housing opportunities for extremely low-income individuals with disabilities at nine properties across the state.
Section 29 Waiver Application Update: OADS will be responding to CMS informal requests for additional information for requested clarification and changes for the Section 29 Waiver application to align with CMS technical requirements, along with continued work towards aligning requirements of the Lifespan waiver with the same technical requirements that Section 29 must follow. The Section 29 waiver is to be renewed for January 2026.
Other Updates: OADS also successfully hosted the State of the States in Brain Injury conference for the National Association of State Head Injury Administrators, bringing national experts, state leaders, and providers together to advance services for people with brain injury.
Over the past month, OADS district quality teams addressed complaints regarding agency services, advanced case resolutions, and initiated corrective action where appropriate. Referrals were received from Adult Protective Services (APS). Caseworkers maintained quarterly meetings with agencies and triaged Reportable Events as needed. The team finalized plans to implement event triage in the Evergreen system—a key step toward certification by the Centers for Medicare & Medicaid Services (CMS)—and participated in Tableau training to support the forthcoming Events Dashboard being developed by Passerelle, targeted for July 1, 2026. The Crisis Services team is also delivering START Coordinator training, with the START model which will be embedded within OADS Crisis operations and extended to agencies supporting individuals with complex behavioral needs.
-A self-advocate thanked OADS for all of its work. She thanked OADS for helping people in the community about reporting dangerous situations. She stated that the best way for people in the community to report concerns regarding Home and Community Based Providers is through the Department’s online complaint form. She stated that having people understand that these agency homes are people’s homes is important. She asked what was going on with transportation.
Derek: Thank you for all of your communication with community members etc. It really does take a village. OADS continues to work with our quality framework and compliance with the Access Rule, which requires states to collect and then report around certain things like complaints and grievances, with particular attention to abuse, neglect, and exploitation. I’m not the best person to speak about transportation. What I do know is that the broker that is currently going through bankruptcy court continues to provide rides and support transportation. I’m not aware of any significant disruption currently, but that’s not to say there won’t be an impact in the future.
-A self-advocate asked about the Section 811 Project Rental Assistance Program and its waitlist.
Sara Fleurant: One of the things that’s unique about Section 811 Project Rental Assistance is that there’s no application. If someone is interested in getting on the waitlist they would reach out to our team at OADS and get them on the waitlist in real-time. At the time when someone receives an offer letter for an apartment, that’s when they do the application for that specific property. You can feel free to reach out directly to me: [email protected].
Cullen: Thank you for both being here and for all of this information!
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: I have spoken about our Pathways 2 Partnership (P2P) grant here previously. We included Benefits Counseling Services to young people and their families as part of that project. We are dedicated to ensuring that young people and their families have access to this information early so they can make informed decisions. Under our grant we're going to be piloting allowing people to get benefits counseling services without already receiving Social Security benefits. This is a small subset of people, but we’re hoping that getting the information out earlier might help with trajectories of what people are thinking about for employment.
The Bureau of Rehabilitation Services houses the state ADA Accessibility Coordinator. Jason Angel, in our office, is out and about meeting with all different state agencies, and their ADA coordinators. He also provides training and technical assistance and answers questions from the public about access to state services and programs. He's a fantastic resource and a person with lived experience who has been a tremendous addition to our team here. He can be reached via email: [email protected] it's a generic email, but it goes to him.
As a follow-up to last month, we continue to have no VR waitlist and are able to provide services statewide, both virtually and in-person.
Cullen: Thank you very much, Libby!
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM)
Lucas Cuellar: The big news I have is a personal update: I will be transitioning to a different role, so there will be a different DRM representative at these meetings, likely Staci Converse. I will be transitioning to the Brain Injury Advocacy Role, so I may pop into these meetings from time to time.
October is the end of the fiscal year, and we’ve done a lot throughout the year. We’ve made a concerted effort to get out into the community, monitoring homes, and seeing what’s going well for people, what could be improved upon, etc.
-A self-advocate asked about the future of their funding that could be in jeopardy.
Lucas: My understanding is that with the One Big Beautiful Bill Act there could be cuts not just for the disability rights organizations, but in several other areas including Head Start programs.
Cullen: It has been wonderful having you here, Lucas, and we wish you luck in your new role. I hope we continue to see you here!
Federal & Housing Updates:
Cullen: The biggest update is around the federal government shutdown, which is in its 41st day – the longest in history. There is a renewed effort to pass a short-term CR and reopen the government. After much negotiation, on 11/9 the Senate advanced a funding bill with a procedural vote. The bill now faces votes for passage and must be taken up by the House to reopen the government. The bill includes three full-year appropriations bills to fund some federal departments through the end of the fiscal year, money to fully fund SNAP, and reverses the Administration’s shutdown layoffs. The CR does not include extending Affordable Care Act (ACA) subsidies, but a promise to vote on doing so once the government reopens. The Senate is preparing to advance FY 26 spending bills, including T-HUD, once the shutdown concludes.
We have been following the current shutdown’s potential effect on SNAP closely. 169,812 households in Maine receive SNAP benefits: with more than half of these households including a person with a disability, 43% including an older adult, and more than 1/3 including children. There were two Federal court rulings on 10/31 which directed the US Department of Agriculture to release emergency contingency funds for SNAP. The Administration stated on Monday 11/3 that it would authorize partial (half) SNAP payments using contingency funds. The plaintiffs in the lawsuits went back to court inquiring if partial SNAP payments complied with the Court’s ruling and the Judge found it did not and that full SNAP payments must go out during the shutdown. On 11/7 the Administration announced it would appeal the ruling. Later that same day USDA announced they will be issuing full SNAP payments and Governor Mills announced full SNAP benefits would go out 11/10-11/14 as scheduled. Then the Supreme Court granted a temporary stay and subsequently USDA ordered states to immediately reverse all actions to provide full SNAP benefits. Maine did not reverse this, and full benefits went out as scheduled.
As this group knows from last month, the Administration also began laying off federal workers during the shutdown. However, a judge has issued a temporary restraining order regarding this practice and the Senate’s CR would reverse these layoffs.
We are closely following everything going on at the federal level 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 regular updates and action alerts.
Previous updates that we’re still following:
Medicaid cuts remain a large threat, specifically and most recently in the Budget Reconciliation Bill (HR 1, One Big Beautiful Act) which was signed by the President on 7/4 (see below for more information). The entire Maine Delegation attempted to thwart efforts to include cuts to Medicaid in this reconciliation bill by voting against it. The cuts to Medicaid and SNAP will take effect in the fall of 2026, right around the Mid-Term Elections.
Previous Item Reconciliation Bill, HR 1, One Big Beautiful Bill Act: On 7/4 President Trump signed HR 1 into law. The bill cuts over $1 trillion in funding for safety net programs, including Medicaid and the Supplemental Nutrition Assistance Program (SNAP). Even with these cuts, the nonpartisan Congressional Budget Office (CBO) estimates the bill will add over $3.9 trillion to the federal deficit over the next decade.
-Includes portions of the AHCIA: The bill does include key pieces of the Affordable Housing Credit Improvement Act (AHCIA) (S 1515 / HR 2725) that would expand and reform the LIHTC program.
- Low-Income Housing Tax Credit (LIHTC) Expansion: The act permanently increases LIHTC allocations and reduces the bond financing requirement for certain properties. These changes are anticipated to support the creation of over a million additional affordable homes over the next decade.
- Opportunity Zone (OZ) Program: The Reconciliation Bill makes the OZ program permanent with changes to eligibility and a requirement for a percentage of zones to be in rural areas.
- Other Relevant Provisions: The bill includes extensions of the New Markets Tax Credit and bonus depreciation, along with a phase-down of certain green energy tax credits.
- Cuts Medicaid by more than $1 trillion – the largest cut in history.
- Work Requirements: The bill expands the provision taking away Medicaid from people who don’t meet a work requirement so that it would apply to parents enrolled through the Medicaid expansion who have children older than 13.
- Severely limits how some states finance their Medicaid programs.
- Per capita cap/block granting
- Cuts eligibility across all major health coverage programs for most categories of immigrants living lawfully in the U.S.
- $430 million to $522 million per year in Medicaid costs could be shifted to the State.
- 4,300 state jobs could be lost.
- $700 million in potential lost hospital revenue annually.
- The changes could lead to tens of thousands of Mainers losing health coverage altogether.
-SNAP:
- SNAP would be cut by $186 billion through 2034, according to the Congressional Budget Office (CBO) (about a 20% cut). This is the largest SNAP cut in history, which could lead some states to end their program entirely.
- Most states would be required to pay 5 to 15 percent of food benefits. If a state can’t make up for these massive federal cuts with tax increases or spending cuts elsewhere in its budget, it would have to cut its SNAP program (such as by restricting eligibility or making it harder for people to enroll) or it could opt out of the program altogether.
- Work Requirements: Under current SNAP rules, most non-elderly, non-disabled adults without children in their homes can’t receive benefits for more than three months out of every three years if they don’t document they are working at least 20 hours per week or prove they qualify for an exemption. The Bill expands this restriction to older adults aged 55-64 and to parents whose youngest child is at least 14 years old, while also significantly limiting waivers for areas with poor economic conditions. The final version of this bill strips current exemptions from the work requirement for veterans, people experiencing homelessness, and former foster youth.
- Cut food benefits by an average of $100 per month for about 600,000 low-income households by eliminating an administrative simplification for calculating utility expenses for many households.
- Up to 30,000 people on SNAP in Maine who were previously exempt from work requirements will likely now have to meet them.
- Approximately 2,000 New Mainers are expected to lose SNAP eligibility.
- As many as 31,000 residents are at risk of losing some or all of their SNAP benefits.
Executive Orders: No new updates. Previous update:
President Trump initiated a series of Executive Orders (EOs) which, if implemented/upheld by the courts, could make it 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.
House & Senate FY 26 Budgets (including T-HUD): Updates: The Senate is preparing to advance FY 26 spending bills, including T-HUD, once the shutdown concludes.
Senate THUD Budget: No new updates. Previous updates: The Senate passed its FY 26 THUD spending bill that would provide $73.3 billion for HUD, significantly more than the $67.8 billion provided for HUD in the House’s draft FY26 spending bill. Per NLIHC, like the House’s FY26 THUD spending proposal, the Senate’s proposal rejects the funding cuts and policy proposals in the Trump administration’s FY26 appropriations request, which would have overhauled and cut funding for rental and homelessness assistance programs. The bill includes:
- Section 8: $37.4 billion, an increase from $36.04 billion in FY 25. This includes an additional $1.82 billion to renew existing Tenant-Based Rental Assistance (TBRA) contracts, totaling $33.97 billion for contract renewals in FY26.
- Project-Based Section 8: $17.8 billion for PBS8, an increase from $16.8 billion in FY 2025.
- FedHOME: $1.25 billion in funding for the HOME Investment Partnership program, which was zeroed out in the President’s proposal and the House’s draft FY26 THUD spending bill.
House FY 26 THUD Budget: No new updates. Previous updates: On 7/17 the full House Appropriations Committee passed the FY 26 THUD spending bill. After accounting for housing revenues, $96.8 billion is provided for federal transportation and housing programs, a cut of nearly $6 billion, or 6%, from 2025. The proposal would fund HUD at $67.8 billion, a decrease of $939 million from the $74.6 billion provided for HUD programs in FY25. Though this level of funding is not sufficient to maintain investments in affordable housing programs, the bill also largely rejects many of the cuts the President called for in his FY 26 spending request for HUD. Per NLIHC the bill provides the following:
- Section 8: $35.26 billion – a $773 million decrease vs FY 25 this includes level funding, $32.14 billion, to renew existing HCV contracts. Because the cost of rent increases from year to year, flat funding acts as a cut to rental assistance programs. Per CBPP this would result in more than 400,000 fewer people receiving assistance to help them afford housing.
- Project-Based Section 8: $17.12 billion – a $237 million increase vs FY 25, which is at least $500 million short of what is needed to prevent the eviction of nearly 45,000 very low- and low-income households.
- FedHOME: Eliminates HOME completely.
Federal Bills: No new updates. Previous updates:
- 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.
- S 1234 / HR 2540 SSI Savings Penalty Elimination Act: This is a bipartisan, 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.
State Legislature Update
Laura Cordes – MACSP (Maine Association of Community Service Providers): I would be happy to go over the list of bills carried over, that made it through Legislative Council, etc. in February when we will know more, and continue to keep you all updated throughout the Session.
Cullen: Thank you, Laura. That would be great!
Laura: The Second Session, or the “short session”, is scheduled to start 1/7/26, and the statutory adjournment date (the 3rd Wednesday of April) is scheduled for 4/15/26. Cloture occurred September 26, 2025. Only bills deemed to be “emergency bills” and bills put forth by the Governor can be considered, along with bills that were carried over from the previous session. The Legislative Council met to determine what bills will move forward and be considered in the Second Session. The bills considered and their outcomes is available online.
As this group knows, there are a whole host of bills that either didn’t move through the House and Senate for votes for enactment or didn’t get funded off the Table. The vast majority of these bills were carried over into the next Legislative Session. And there are some bills that were enacted and sent to the Governor, but since the Legislature adjourned Sine Die, they were held by the Governor and will become law when the Legislature next convenes for at least three days. This will likely happen in January. We are expecting a Supplemental Budget, which the Governor is expected to release, also in January.
Cullen: Thank you, Laura! This is a really good time to reach out to Legislators, especially ones in your district, to tell your story and advocate for necessary resources to meet the needs of people with ID/DD in Maine. Thank you all for your time, effort, and advocacy for people with ID/DD in Maine. I hope you will continue to advocate and raise your voice in the Second Session.
Other Business:
-A self-advocate stated that she went to her polling place with her husband who is legally blind. They forgot to give him the second ballot, and he almost left without voting on the second ballot. That was just one complication, and they will be reporting their experience to the Secretary of State.
Cullen: I want to acknowledge Peter Stuckey who’s in attendance today. He was instrumental in the development of the Section 29 Waiver. He really listened to us and the needs of people with disabilities in Maine and was a fantastic legislator. Thank you for being here, Peter, and for all you have done for people with disabilities in Maine!
-A parent who recently lost her daughter and described herself as a “former parent”, who is also a long-time member of the Coalition, stated that with her own medical issues she’s going through similar experiences that many loved ones have gone through, and the frustration and isolation is real. She stated that the general population is feeling the same pressures we have been for years, so in some ways that’s helpful to our cause. In many ways we’ve made progress, but in many ways we have not. She stated she’s not sure how much longer she can stay in the state and doesn’t feel like she has the resource she used to have, the ones needed for parents and family members.
Cullen: I’m sorry to hear that and I hope you stay in Maine! I want to urge you to stay involved and connected with this group. You are a fierce advocate, and we are all better for you being here and are grateful for your decades of advocacy.
Cullen: We do slowly move the needle by coming together, sharing with each other, learning to trust one another, and hearing from all parts of the whole system through direct conversations. I appreciate you all taking time each month to do that and bring our state closer together and pointed in the right direction. I want to wish everyone a happy and joyful Thanksgiving. I hope everybody gets some time with family. Thank you all for what you do.
Cullen: If you know people who could benefit from being here, I encourage you to reach out and have them forward their email to Vickey [email protected] or join by going on the website.
The next meeting will be on Monday, December 8, 2025, 12-2:00pm, via Zoom*
Featured Speaker: Roger Bondeson, Associate Director, Division of Operations, DHHS-Office of MaineCare Services.
Topic: An Update on Non-Emergency Transportation.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2026 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].