December 9, 2024
Minutes
Minutes
Attendees via Zoom: Aydan Rudolph, Betsy Hopkins, Brenda Smith, Carol Snyder, Craig Patterson, David Cowing, J Richardson Collins, Janet DiBiase, Jennifer Frey, Julianne Zaharis, Kate Turpin, Keri Lopes, Kile Pelletier, Kim Humphrey, Kristin Overton, Laura Cordes, Liz Burgess, Lorraine DeFreitas, Lucas Cuellar, Margaret Cardoza, Paula Bush, Sandy Flacke, Sara Fleurant, Shane Ashe, Shelley Zielinski, Stacy Lamontagne, Teague Morris, Titus O’Rourke, Vickey Merrill, Cullen Ryan, 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: Kate Turpin, Youth Self-Advocacy Project Director, Disability Rights Maine. drme.org Topic: Youth Self Advocacy: The Key to Long-Term Success.
Cullen: I am pleased to welcome Kate Turpin, Youth Self-Advocacy Project Director with Disability Rights Maine presenting on Youth Self Advocacy: The Key to Long-Term Success. This will be a really neat presentation pertaining to empowering people with disabling conditions to assert and advocate for themselves and know their rights. Thank you for being here today!
Kate Turpin: Thank you for having me, it’s a pleasure to be here today! Disability Right Maine’s Youth Self Advocacy Project had a mighty task ahead of them in Spring 2023 – mentoring and training as many young Mainers (labeled with intellectual/developmental disabilities) to advocate for themselves as possible before our grant ended in December 2024. In this presentation, you will learn about the perseverance the YSAP team mustered to have trained more than 1,000 young Mainers and roughly 1,000 staff in a year and a half. Trainings covered a range of topics from Alternatives to Guardianship, Supported Decision Making, Employment, and Voting Access, to Healthy Relationships, Body Rights, and Abuse Prevention. Today I will share unexpected learning outcomes and what appear to be state-wide gaps in the education of our students with disabilities.
Begin Presentation (click here for the presentation)
Aydan Rudolph and Kile Pelletier, the self-advocacy trainers in attendance, introduced themselves.
Kate: We were able to connect with a few school districts identifying skills that advocates have – identifying problems and solutions, how to ask for help, how to identify goals and take steps towards goals. We did this through interactive activities.
Aydan and Kile both stated that providers responded most to the Self-Advocacy 101, Disability and Identity, and Supported Decision-Making trainings.
Kate: We also have train-the-trainer trainings.
Aydan provided an overview of their presence in southern Maine, included in the presentation.
Kate: A few high schools have reached out regarding professional development training for their staff.
Kile provided an overview of their presence in Aroostook County, included in the presentation.
Kate: One of the most unexpected outcomes was connecting with Mad Hatter Wellness. We’re looking at train-the-trainers on Mad Hatter Wellness for professionals and adults with disabilities to co-teach with professionals. If you’re interested, please feel free to reach out to me: [email protected]
Discussion:
Betsy Hopkins – DHHS-OADS: We had the opportunity to fund a lot of innovative projects, and this is one of them. I’m so pleased with the work you’ve been doing! I want to thank you all for your work on this – you exceeded our expectations around it, and I appreciate DRM, and all of the self-advocates involved.
-A parent stated that there were a lot of really touching comments. The project had a great reach and it’s a really great project.
-It was asked if there’s an opportunity for this work/project to continue.
Kate: From my understanding, our innovation grant ends at the end of December. DRM is internally funding the program from December through June, after which time we’ll be applying for other grant opportunities.
-A parent asked if agencies will be outreached regarding the Mad Hatter Wellness trainings.
Kate: Yes! We’re currently doing work with Creative Trails and Woodfords. We have temporarily stopped outreaching about these trainings, but we will start this again soon. We can do these trainings virtually and in-person.
Lucas Cuellar - DRM: Part of this is training others who can provide these trainings – that could be an option as well.
Kate: The Mad Hatter Wellness curriculum Empowered Together is co-taught by a professional, me, and a person with disabilities. There are two training options – one is for us to provide the training, and the other is for us to train you to assist with providing these trainings (which is a paid opportunity).
Kile: The train-the-trainer trainings help with building public speaking skills as well.
-A self-advocate stated that it appears the smallest audience for these trainings was parents. There are a lot of parents in attendance today – they could be drawn from for future parent trainings. All parts of the community need to be connected – individuals, providers, educators, and parents/family members. Targeting parents and family members would be advantageous. A parent agreed with this and that the target audiences could be broader.
Kate: We say that self-advocates and self-advocacy is only one piece of the puzzle – it definitely takes everyone working together!
-A self-advocate stated that regarding the survey results for bodily autonomy – this is a sensitive subject and if there is a history of abuse it’s important that resources for support be available.
Kate: I appreciate you mentioning the resource piece. SUFU (Speaking Up For Us) coordinated with people at Planned Parenthood, MECASA (Maine Coalition Against Sexual Assault) etc. Their challenge was they didn’t have enough people to do the trainings – they had one holder of the knowledge. So, there are a few professionals at organizations that have this training but they’re not currently providing it. We’re working on addressing this through collaborations. There is a comprehensive sexual wellness conference in Bangor in April – I was invited to be on the Advisory Board of that and we’re inviting someone to provide a presentation on this curriculum. I have a background as a guidance counselor so with that background we ensured that when we did this, we had parents involved as well for transparency which helped to decrease stigma around these topics.
Cullen: Thank you very much, this was a great presentation. I also want to thank Kile and Aydan and all of the team involved. If 2,000 self-advocates are trained to raise their voice, I believe it will truly help to move the needle. Thank you all again – well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins:
Lifespan Waiver Application: We are still drafting the application. We hope to be able to post this for public comment soon.
Licensing Rule: This is still under review by our Attorney General’s Office.
OADS Celebrates Conclusion of Innovative HCBS Projects and Looks Ahead to 2025 Innovation Summit: This month, the Office of Aging and Disability Services (OADS) proudly announces the successful conclusion of our Innovation Projects funded by FMAP/ARPA to enhance service delivery for Home and Community-Based Services (HCBS) waivers. Over the past year and a half, OADS has spearheaded 19 innovative pilot sub-projects across MaineCare sections 18 (Brain Injury), 19 (Aging), 21 (Comprehensive Intellectual and Developmental Disabilities (IDD) and Autism), and 29 (Community IDD and Autism).
These pilots have fostered creativity, collaboration, and tangible improvements in service delivery. Supported by our partner, the National Disability Institute (NDI), the initiative encompassed diverse solutions to address the unique needs of waiver participants. As the initiative wraps up in December 2024, NDI will deliver a comprehensive final report, complete with an evaluation of outcomes. Here are a few standout examples of the innovative sub-projects:
For a full list of the funded projects and their objectives, please visit our Innovation Pilot website.
Looking Ahead: OADS Innovation Summit
Building on the success of these projects, OADS is looking forward to our Innovation Summit, a national and regional conference set to take place in Portland, Maine, on May 19–20, 2025. This event will bring together thought leaders, practitioners, and stakeholders to explore cutting-edge advancements in service delivery.
Key Features of the Innovation Summit:
For more information about registration, speakers, and schedules you can visit our Innovation Summit website.
-A self-advocate asked if the Tech Expo is inclusive of tech for people who are blind/visually impaired. She stated that the Division for the Blind and Visually Impaired falls under the Department of Labor and worried there might be a disconnect between the two Departments in planning for this.
Betsy: That’s a great question. We’re seeking presenters for the Innovation Summit, so if you know of someone, please have them go to the website and apply to present. We’re partnering with the Voc Rehab side of DOL, so I’ll make sure that Libby Stone-Sterling includes the Division for the Blind and Visually Impaired as well.
-A parent asked about the public comment period for the Lifespan Waiver application.
Betsy: We haven’t submitted the application to CMS yet – the day we submit it to them is when it will be posted for public comment.
Cullen: Thank you for being here and for providing all of this information, Betsy, and thank you for funding these innovative projects!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/obh/support-services/childrens-behavioral-health - No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling could not attend today’s meeting but sent the following update via email:
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: We’re really hoping that the youth self-advocacy work can be entrenched in all of our work at DRM. It really helps to bridge the children’s world and the adult world. Aside from that I wanted to circle back to our Lee Residential follow-up. We did an initial triage response following the Lee case – at this point we have completed that initial step of connecting with everyone living in that agency and connected with outside supporters, family members, friends, etc. Through this we’ve been able to help several people with their issues and concerns. We’re looking at expanding our capacity to do more outreach and be a better more ubiquitous resource. And we’re looking at ways we can be more effective and systemic in our efforts.
-A self-advocate stated that a report or recommendations for improvement regarding the Lee case would be helpful. She congratulated the thoughtful, compassionate approach to the healing process.
Craig Patterson – DHHS-OADS: I just want to thank DRM again for their work. I’m hoping we’ll see some of this work play out in the PCP (Person-Centered Planning) process – which we’ve said for some time that we don’t have a lot of confidence in currently. One of the components of this innovative design had to do with helping individuals understand their role in the PCP process and how they could push that power forward.
Lucas: We do have an individual (Brian) who has developed a curriculum and has been working on meeting with people who want to be trainers – to train people with disabilities who most likely have a PCP themselves on how to train other people related to self-advocacy with the PCP process. I know Brian has been successful in these endeavors where he’s been able to – the Bangor area specifically. This project will come to a close in December and at that point we’ll be assessing next steps. I attend PCP meetings and there’s a lot of acceptance of “this is how it’s always gone, so this is how it goes”. The PCP process doesn’t appear to have truly turned the corner of centering the person’s voice.
Cullen: Thank you for being here, Lucas, and I want to echo Craig’s praise!
Federal & Housing Updates:
Cullen: If the next Administration is similar to when Trump was President previously, Medicaid could be the target of cuts – we will be watching this closely. Our Delegation has been great and has been advocating for all the right bills and for housing and quality services for people in Maine, including people with ID/DD. Additionally, Maine is still under a Section 8 freeze – complicating efforts to find affordable housing for populations that need it.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): The First Regular Session of the 132nd Legislature got underway last week when Legislators were sworn in. Democrats retained majorities in both chambers, though by smaller margins. Committees have not been assigned yet; I’m hearing this may happen as early as this week. The First Session is the longer of the two sessions. Any lawmaker can file any bill – meaning there will be more bills to contend with. Cloture, which is when bills must be filed, has been set for January 10th. Cloture normally occurs in December; it has been pushed to January because there is an effort this year to prevent legislators from filing placeholders (concept drafts) and instead requiring full bills to be submitted. The idea is that this allows more transparency not only for Legislators but the public as well and will make for a better start of the Session.
We all care about sustaining access to services, which is reliant on workforce which is reliant on the ability to pay a professional wage. We’ve worked hard on a new rate-setting system, which includes COLAs ( cost of living adjustments) and ensuring 125% of minimum wage. The way this has happened over the past few years is when the minimum wage goes up in January, the Department applies COLAs and increased rates based on 125% of minimum wage. There is a budget-deficit projected of close to a billion dollars (General Fund & Highway Fund combined). The Legislature will be looking at the Biennial Budget and will likely be looking at the Governor’s Supplemental Budget. There has been concern with being able to fund/sustain the new rates being proposed as well as the existing codified rates system. On Monday last week, a MaineCare notice came out that was quite surprising – the Department said they would not be adjusting rates with a COLA January 1st, and it will be reliant on additional appropriations through the Supplemental Budget. This comes very late in the game for providers that have done their budgets based on statute and accounted for COLAs happening in January. This means we will have to advocate for these COLAs in the Supplemental Budget process. The deficit situation still has many unknowns, as such it’s unknown if there will be funding for cost-of-living adjustments, rate adjustments, wage increase, waitlists, etc. in the next budget year.
We simply don’t have sufficient information on the shortfall. If the Department is seeing a shortfall, what is it? How can we help advocate for sufficient funding in the Supplemental Budget? We’re looking into this.
-A self-advocate stated that it’s concerning hearing about disregard to current law as it pertains to COLAs. She stated that the way this will affect agencies and the people they serve is very concerning.
Cullen: Please continue to raise your voice and tell your stories so that when the 132nd Legislature begins considering bills, including the Supplemental and Biennial Budgets, Legislators are educated on the needs of people with disabilities in Maine and well-poised to make good decisions. Sharing personal stories is the most effective form of advocacy and is essential to ensure we move the needle forward. Thank you, Laura, for this information, for all you do, and for all you will do as the Legislative Session gets underway!
Thank you all – I appreciate all of you and I hope you all have a wonderful holiday season and a happy New Year!
The next meeting will be on Monday, January 13, 2025, 12-2:00pm, via Zoom*.
Featured Speakers: Catherine Thibedeau, Executive Director, and Nora Eskin, Assistive Technology Manager, Independence Advocates of Maine. Topic: An overview of Tech-First Service Delivery (Assistive Technology, Remote and Virtual Supports, use of Just-In-Time staff vs. Just-In-Case staff) and what is available here in Maine at this time and what the future may hold.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2025 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Kate Turpin, Youth Self-Advocacy Project Director, Disability Rights Maine. drme.org Topic: Youth Self Advocacy: The Key to Long-Term Success.
Cullen: I am pleased to welcome Kate Turpin, Youth Self-Advocacy Project Director with Disability Rights Maine presenting on Youth Self Advocacy: The Key to Long-Term Success. This will be a really neat presentation pertaining to empowering people with disabling conditions to assert and advocate for themselves and know their rights. Thank you for being here today!
Kate Turpin: Thank you for having me, it’s a pleasure to be here today! Disability Right Maine’s Youth Self Advocacy Project had a mighty task ahead of them in Spring 2023 – mentoring and training as many young Mainers (labeled with intellectual/developmental disabilities) to advocate for themselves as possible before our grant ended in December 2024. In this presentation, you will learn about the perseverance the YSAP team mustered to have trained more than 1,000 young Mainers and roughly 1,000 staff in a year and a half. Trainings covered a range of topics from Alternatives to Guardianship, Supported Decision Making, Employment, and Voting Access, to Healthy Relationships, Body Rights, and Abuse Prevention. Today I will share unexpected learning outcomes and what appear to be state-wide gaps in the education of our students with disabilities.
Begin Presentation (click here for the presentation)
Aydan Rudolph and Kile Pelletier, the self-advocacy trainers in attendance, introduced themselves.
Kate: We were able to connect with a few school districts identifying skills that advocates have – identifying problems and solutions, how to ask for help, how to identify goals and take steps towards goals. We did this through interactive activities.
Aydan and Kile both stated that providers responded most to the Self-Advocacy 101, Disability and Identity, and Supported Decision-Making trainings.
Kate: We also have train-the-trainer trainings.
Aydan provided an overview of their presence in southern Maine, included in the presentation.
Kate: A few high schools have reached out regarding professional development training for their staff.
Kile provided an overview of their presence in Aroostook County, included in the presentation.
Kate: One of the most unexpected outcomes was connecting with Mad Hatter Wellness. We’re looking at train-the-trainers on Mad Hatter Wellness for professionals and adults with disabilities to co-teach with professionals. If you’re interested, please feel free to reach out to me: [email protected]
Discussion:
Betsy Hopkins – DHHS-OADS: We had the opportunity to fund a lot of innovative projects, and this is one of them. I’m so pleased with the work you’ve been doing! I want to thank you all for your work on this – you exceeded our expectations around it, and I appreciate DRM, and all of the self-advocates involved.
-A parent stated that there were a lot of really touching comments. The project had a great reach and it’s a really great project.
-It was asked if there’s an opportunity for this work/project to continue.
Kate: From my understanding, our innovation grant ends at the end of December. DRM is internally funding the program from December through June, after which time we’ll be applying for other grant opportunities.
-A parent asked if agencies will be outreached regarding the Mad Hatter Wellness trainings.
Kate: Yes! We’re currently doing work with Creative Trails and Woodfords. We have temporarily stopped outreaching about these trainings, but we will start this again soon. We can do these trainings virtually and in-person.
Lucas Cuellar - DRM: Part of this is training others who can provide these trainings – that could be an option as well.
Kate: The Mad Hatter Wellness curriculum Empowered Together is co-taught by a professional, me, and a person with disabilities. There are two training options – one is for us to provide the training, and the other is for us to train you to assist with providing these trainings (which is a paid opportunity).
Kile: The train-the-trainer trainings help with building public speaking skills as well.
-A self-advocate stated that it appears the smallest audience for these trainings was parents. There are a lot of parents in attendance today – they could be drawn from for future parent trainings. All parts of the community need to be connected – individuals, providers, educators, and parents/family members. Targeting parents and family members would be advantageous. A parent agreed with this and that the target audiences could be broader.
Kate: We say that self-advocates and self-advocacy is only one piece of the puzzle – it definitely takes everyone working together!
-A self-advocate stated that regarding the survey results for bodily autonomy – this is a sensitive subject and if there is a history of abuse it’s important that resources for support be available.
Kate: I appreciate you mentioning the resource piece. SUFU (Speaking Up For Us) coordinated with people at Planned Parenthood, MECASA (Maine Coalition Against Sexual Assault) etc. Their challenge was they didn’t have enough people to do the trainings – they had one holder of the knowledge. So, there are a few professionals at organizations that have this training but they’re not currently providing it. We’re working on addressing this through collaborations. There is a comprehensive sexual wellness conference in Bangor in April – I was invited to be on the Advisory Board of that and we’re inviting someone to provide a presentation on this curriculum. I have a background as a guidance counselor so with that background we ensured that when we did this, we had parents involved as well for transparency which helped to decrease stigma around these topics.
Cullen: Thank you very much, this was a great presentation. I also want to thank Kile and Aydan and all of the team involved. If 2,000 self-advocates are trained to raise their voice, I believe it will truly help to move the needle. Thank you all again – well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins:
Lifespan Waiver Application: We are still drafting the application. We hope to be able to post this for public comment soon.
Licensing Rule: This is still under review by our Attorney General’s Office.
OADS Celebrates Conclusion of Innovative HCBS Projects and Looks Ahead to 2025 Innovation Summit: This month, the Office of Aging and Disability Services (OADS) proudly announces the successful conclusion of our Innovation Projects funded by FMAP/ARPA to enhance service delivery for Home and Community-Based Services (HCBS) waivers. Over the past year and a half, OADS has spearheaded 19 innovative pilot sub-projects across MaineCare sections 18 (Brain Injury), 19 (Aging), 21 (Comprehensive Intellectual and Developmental Disabilities (IDD) and Autism), and 29 (Community IDD and Autism).
These pilots have fostered creativity, collaboration, and tangible improvements in service delivery. Supported by our partner, the National Disability Institute (NDI), the initiative encompassed diverse solutions to address the unique needs of waiver participants. As the initiative wraps up in December 2024, NDI will deliver a comprehensive final report, complete with an evaluation of outcomes. Here are a few standout examples of the innovative sub-projects:
- Youth Self-Advocacy Growth: (This is the program that DRM is presented on today) - Programs empowering youth with intellectual and developmental disabilities to advocate for themselves and actively participate in their communities.
- Remote Medical Services for IDD and Autism: Effective, cost-saving telehealth solutions designed specifically for individuals with IDD and autism, enhancing access to care while reducing barriers.
- Community Connection Mobile App: A user-friendly tool connecting HCBS waiver participants to essential community services and resources.
- Rapid Interventions for Traumatic Brain Injury (TBI): An in-state service model providing swift and specialized treatment for individuals with TBI.
For a full list of the funded projects and their objectives, please visit our Innovation Pilot website.
Looking Ahead: OADS Innovation Summit
Building on the success of these projects, OADS is looking forward to our Innovation Summit, a national and regional conference set to take place in Portland, Maine, on May 19–20, 2025. This event will bring together thought leaders, practitioners, and stakeholders to explore cutting-edge advancements in service delivery.
Key Features of the Innovation Summit:
- Expert Panels and Presentations: Featuring leaders in aging, disability services, and healthcare innovation.
- Tech Expo: A hands-on showcase of the latest tools, services, and assistive technologies that are shaping the future of HCBS.
- Networking Opportunities: Facilitating connections among participants to share insights and foster collaboration.
For more information about registration, speakers, and schedules you can visit our Innovation Summit website.
-A self-advocate asked if the Tech Expo is inclusive of tech for people who are blind/visually impaired. She stated that the Division for the Blind and Visually Impaired falls under the Department of Labor and worried there might be a disconnect between the two Departments in planning for this.
Betsy: That’s a great question. We’re seeking presenters for the Innovation Summit, so if you know of someone, please have them go to the website and apply to present. We’re partnering with the Voc Rehab side of DOL, so I’ll make sure that Libby Stone-Sterling includes the Division for the Blind and Visually Impaired as well.
-A parent asked about the public comment period for the Lifespan Waiver application.
Betsy: We haven’t submitted the application to CMS yet – the day we submit it to them is when it will be posted for public comment.
Cullen: Thank you for being here and for providing all of this information, Betsy, and thank you for funding these innovative projects!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/obh/support-services/childrens-behavioral-health - No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling could not attend today’s meeting but sent the following update via email:
- The Pathways to Partnerships Grant that was awarded to Maine Division of Vocational Rehabilitation, in partnership with the Maine Department of Education, and Alpha One – Maine’s Center for Independent Living will begin enrolling children and youth participants in January 2025. The innovative grant is exploring how offering model services to children as young as 10 can improve post-secondary employment and education goals for students with disabilities.
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: We’re really hoping that the youth self-advocacy work can be entrenched in all of our work at DRM. It really helps to bridge the children’s world and the adult world. Aside from that I wanted to circle back to our Lee Residential follow-up. We did an initial triage response following the Lee case – at this point we have completed that initial step of connecting with everyone living in that agency and connected with outside supporters, family members, friends, etc. Through this we’ve been able to help several people with their issues and concerns. We’re looking at expanding our capacity to do more outreach and be a better more ubiquitous resource. And we’re looking at ways we can be more effective and systemic in our efforts.
-A self-advocate stated that a report or recommendations for improvement regarding the Lee case would be helpful. She congratulated the thoughtful, compassionate approach to the healing process.
Craig Patterson – DHHS-OADS: I just want to thank DRM again for their work. I’m hoping we’ll see some of this work play out in the PCP (Person-Centered Planning) process – which we’ve said for some time that we don’t have a lot of confidence in currently. One of the components of this innovative design had to do with helping individuals understand their role in the PCP process and how they could push that power forward.
Lucas: We do have an individual (Brian) who has developed a curriculum and has been working on meeting with people who want to be trainers – to train people with disabilities who most likely have a PCP themselves on how to train other people related to self-advocacy with the PCP process. I know Brian has been successful in these endeavors where he’s been able to – the Bangor area specifically. This project will come to a close in December and at that point we’ll be assessing next steps. I attend PCP meetings and there’s a lot of acceptance of “this is how it’s always gone, so this is how it goes”. The PCP process doesn’t appear to have truly turned the corner of centering the person’s voice.
Cullen: Thank you for being here, Lucas, and I want to echo Craig’s praise!
Federal & Housing Updates:
Cullen: If the next Administration is similar to when Trump was President previously, Medicaid could be the target of cuts – we will be watching this closely. Our Delegation has been great and has been advocating for all the right bills and for housing and quality services for people in Maine, including people with ID/DD. Additionally, Maine is still under a Section 8 freeze – complicating efforts to find affordable housing for populations that need it.
- FY 25 Budget – Congress passed, and the President signed a bipartisan continuing resolution (CR) that extends funding for the federal government until 12/20 and includes minimal needed spending adjustments for certain programs to ensure they receive adequate funding to operate for the duration of the CR (known as “anomalies”). Congress will have to negotiate final FY 25 spending prior to the expiration of this CR. Advocates are requesting the highest funding increases possible for programs related to housing. With the outcomes of the election, it is very likely that Congress will pass another CR prior to the current one expiring to delay final FY 25 spending until the new Congress. Maine is currently under a Section 8 freeze which is very troubling and unprecedented. Out Delegation is aware and we’re hopeful there will be a fix – time will tell.
- House T-HUD Bill: On 7/10 the House Appropriations Committee passed its proposal to cut funding for HUD programs in FY 25 spending bill. Overall, the proposal would fund HUD at $73.2 billion – $2.3 billion, or about 3%, less than the FY 24 funding level. No housing-related amendments were passed.
- Senate T-HUD Bill: In August, the Senate’s THUD Appropriations Committee approved its FY 25 draft spending bill. Overall, the bill provides $78.2 billion for HUD’s affordable housing, homelessness, and community development programs, an increase of $8.2 billion – or more than 10% – over FY24-enacted levels. The bill proposes:
- $35.3B for $2.9B increase for Tenant-Based Rental Assistance (TBRA) program ($2.9B increase vs FY 24 and $3 billion more than the funding proposed in the House THUD bill). The funding provided may be sufficient to cover the full cost of renewing existing TBRA voucher contracts.
- Increased funding for: Project-Based Rental Assistance (PBRA), the HOME Investment Partnership Program (HOME), and Section 202 Housing for the Elderly.
- HR 7024 The Tax Relief for American Families and Workers Act – On 8/1, the Tax Relief for American Families and Workers Act (formerly S 1557/ HR 3238 The Affordable Housing Credit Improvement Act – see below for more info. On this bill which is included in HR 7024) was brought to the Senate floor for a vote, and it failed to pass. The legislation passed the House of Representatives earlier this year by a wide bipartisan vote of 357 to 70. The provisions in H.R. 7024 would finance the construction of over 200,000 new affordable homes nationwide. As a result, these provisions would finance 1,500 new rental homes in Maine generating new jobs throughout Maine.
- The American Housing and Economic Mobility (AHEM) Act of 2024 – Senators Elizabeth Warren (D-MA) and Raphael Warnock (D-GA) and Representative Emanuel Cleaver (D-MO) reintroduced the American Housing and Economic Mobility (AHEM) Act in the Senate and House on 7/9. The bill would provide the large-scale investments required to construct nearly 3 million new units of affordable housing. If enacted, the AHEM Act would provide:
- More than $44 billion dollars in the national Housing Trust Fund (HTF) annually for 10 years, resulting in $445 billion in total investments to build, repair, and operate nearly 2 million homes for households with low incomes.
- More than $1 billion in the construction of new rental housing and homeownership opportunities in rural communities.
- S 570/H.R. 1342, Medicaid Dental Benefit Act of 2023 – Introduced by Senator Cardin, this bill requires state Medicaid programs to cover dental and oral health services for adults. It also increases the Federal Medical Assistance Percentage (i.e., federal matching rate) for such services. The Centers for Medicare & Medicaid Services (CMS) must develop oral health quality and equity measures and conduct outreach relating to such coverage. Additionally, the Medicaid and Children's Health Insurance Program (CHIP) Payment and Access Commission must report on specified information relating to adult oral health care.
- S 2767/HR 5408 SSI Savings Penalty Elimination Act – This bipartisan, bicameral bill was reintroduced in the Senate and House. The bill will update SSI’s asset limits for the first time since the 1980s to ensure people with disabilities and seniors are able to prepare themselves for a financial emergency without putting the benefits that they rely on to live at risk. After advocacy from Maine Senator Collins signed on to this bill.
- HR 7055 The Eliminating the Marriage Penalty in SSI Act (EMPSA) – This bill excludes a spouse's income and resources when determining eligibility for Supplemental Security Income (SSI), and disregards marital status when calculating the SSI benefit amount, for an adult who has a diagnosed intellectual or developmental disability. (SSI is a federal income supplement program designed to help aged, blind, and disabled individuals with limited income and resources meet basic needs.).
- S 1557/ HR 3238 The Affordable Housing Credit Improvement Act – Senator Angus King cosponsored bipartisan legislation to create nearly two million new affordable homes across the country – including thousands in Maine. The Affordable Housing Credit Improvement Act would expand the Low-Income Housing Tax Credit (LIHTC) to provide more homes for low-income people, support small businesses trying to attract workers, and fill the state’s gap of more than 20,000 affordable housing units. It appears this bill has strong bipartisan support, increasing its likelihood for passage.
- S 1332 / HR 2941 The Recognizing the Role of Direct Support Professionals Act – The Recognizing the Role of Direct Support Professionals Act would give a standard occupational classification to Direct Support Professionals, an important first step toward professionalizing this career and improving salaries and training. The Senate passed this bill the week of 5/6. The House has yet to approve its companion bill.
- S4120 / HR 7994 The Long-term Care Workforce Support Act – This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Disability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.
- HR 7267 Disability Community Act of 2023 – This bill would amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental disabilities.
- S 7302 The Credit for Caregiving Act of 2024 (Sen. Michael Bennett (D-CO)) – This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit does not exceed $5,000 per year.
- HR 3380 - HEADs UP Act of 2023 (Rep. Seth Moulton (D-MA)) – This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities, as necessary.
- HR 553 Workplace Choice and Flexibility for Individuals with Disabilities Act (Rep. Glenn Grothman (R-WI-6)) – This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.
- HR 1296 Restoration of Employment Choice for Adults with Disabilities Act (Rep. Glenn Grothman (R-WI-6)) – To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): The First Regular Session of the 132nd Legislature got underway last week when Legislators were sworn in. Democrats retained majorities in both chambers, though by smaller margins. Committees have not been assigned yet; I’m hearing this may happen as early as this week. The First Session is the longer of the two sessions. Any lawmaker can file any bill – meaning there will be more bills to contend with. Cloture, which is when bills must be filed, has been set for January 10th. Cloture normally occurs in December; it has been pushed to January because there is an effort this year to prevent legislators from filing placeholders (concept drafts) and instead requiring full bills to be submitted. The idea is that this allows more transparency not only for Legislators but the public as well and will make for a better start of the Session.
We all care about sustaining access to services, which is reliant on workforce which is reliant on the ability to pay a professional wage. We’ve worked hard on a new rate-setting system, which includes COLAs ( cost of living adjustments) and ensuring 125% of minimum wage. The way this has happened over the past few years is when the minimum wage goes up in January, the Department applies COLAs and increased rates based on 125% of minimum wage. There is a budget-deficit projected of close to a billion dollars (General Fund & Highway Fund combined). The Legislature will be looking at the Biennial Budget and will likely be looking at the Governor’s Supplemental Budget. There has been concern with being able to fund/sustain the new rates being proposed as well as the existing codified rates system. On Monday last week, a MaineCare notice came out that was quite surprising – the Department said they would not be adjusting rates with a COLA January 1st, and it will be reliant on additional appropriations through the Supplemental Budget. This comes very late in the game for providers that have done their budgets based on statute and accounted for COLAs happening in January. This means we will have to advocate for these COLAs in the Supplemental Budget process. The deficit situation still has many unknowns, as such it’s unknown if there will be funding for cost-of-living adjustments, rate adjustments, wage increase, waitlists, etc. in the next budget year.
We simply don’t have sufficient information on the shortfall. If the Department is seeing a shortfall, what is it? How can we help advocate for sufficient funding in the Supplemental Budget? We’re looking into this.
-A self-advocate stated that it’s concerning hearing about disregard to current law as it pertains to COLAs. She stated that the way this will affect agencies and the people they serve is very concerning.
Cullen: Please continue to raise your voice and tell your stories so that when the 132nd Legislature begins considering bills, including the Supplemental and Biennial Budgets, Legislators are educated on the needs of people with disabilities in Maine and well-poised to make good decisions. Sharing personal stories is the most effective form of advocacy and is essential to ensure we move the needle forward. Thank you, Laura, for this information, for all you do, and for all you will do as the Legislative Session gets underway!
Thank you all – I appreciate all of you and I hope you all have a wonderful holiday season and a happy New Year!
The next meeting will be on Monday, January 13, 2025, 12-2:00pm, via Zoom*.
Featured Speakers: Catherine Thibedeau, Executive Director, and Nora Eskin, Assistive Technology Manager, Independence Advocates of Maine. Topic: An overview of Tech-First Service Delivery (Assistive Technology, Remote and Virtual Supports, use of Just-In-Time staff vs. Just-In-Case staff) and what is available here in Maine at this time and what the future may hold.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2025 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].