August 12, 2024
Minutes
Minutes
Attendees via Zoom: Bonnie-Jean Brooks, Angela Cushman, Anna McDougal, Bernie, Brenda Smith, Carol Snyder, Cathy Dionne, Cindy Pease, Craig Patterson, David Cowing, Elizabeth Hansen Burgess, Hanna Daigle, Ilea Sangillo, Julianne Zaharis, K Berry, Keri Lopes, Laura Cordes, Libby Stone Sterling, Lisa Wesel, Lucas Cuellar, Margaret Cardoza, Mark Kemmerle, Melissa Bliss, Sammy-Ellie MacKinnon, Sara Fleurant, Shelley Zielinski, Stacy Lamontagne, Wendi Odonovan, Lily, Cindy’s iPhone, Vickey Merrill, Cullen Ryan, a few people who didn’t identify themselves and/or left prior to the conclusion of the meeting.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: 2024 MDSOAB Annual Forum.
Cullen: Each year the MDSOAB holds community forum(s) to pull people familiar with and/or receiving services together to provide input on how well services are working, how they might be improved, and to provide general feedback. Today we are joined by Bonnie Jean Brooks, Executive Director of the MDSOAB to do just that. This forum is designed to start a dialogue. This is one of the primary reasons this Coalition exists – to disseminate information, solicit feedback, and work to optimize the system of care for people with intellectual/developmental disabilities (ID/DD) in Maine. This year will be similar to the past few years’ MDSOAB annual forums. All feedback will be anonymous so please feel free to be very candid. We want you all have Bonnie’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well. She will continue to welcome it as she puts a report together. Thank you, Bonnie, for being here today and for your extensive career, expertise, and leadership!
Bonnie-Jean Brooks: Thank you so much for your kind words and for having me! I don’t consider being the Executive Director of the MDSOAB work. I continue doing what I hope is the right thing, listening to people – their concerns and their needs. We had two forums last week as well, which some of you attended. I’m very grateful for everyone who has attended!
The role of the MDSOAB is described in state statute Title 34-B in Chapter 1. In order to carry out its oversight and advisory functions, the board has several powers and duties. One of our roles is “to hold at least one hearing or other forum each year that is open to the public in order to gather information about the availability, accessibility and quality of services available to persons with intellectual disabilities or autism and their families.” The MDSOAB is responsible for overseeing and advising the Maine Department of Health and Human Services (DHHS) and other relevant state departments about challenges, issues, and successes in the system of care for adults with intellectual and developmental disabilities (IDD) and autism spectrum disorder (ASD) in Maine. The MDSOAB advises the state and makes recommendations for improvement. Each year the MDSOAB spends time listening to Mainers as they share their thoughts, insights, and recommendations about the current system of care. The MDSOAB has been holding annual forums here for more than seven years. This year we are holding a forums at today’s meeting of the Maine Coalition for Housing and Quality Services, as well as additional opportunities to participate (click here for more information). We will also be pleased to accept written comments ([email protected]). Feedback collected about services for people with ID/DD from these forums will be written into a report and presented to DHHS, as well other State agencies.
The MDOAB has a positive working relationship with our state partners and others. We hope to strengthen our collective systems of support by working together. We will listen to your feedback and share it with those partners. We’re in the midst of a lot of systems change and a lot of excitement – not just in Maine but in states all over the country. There are a lot of pretty significant Federal laws that have passed that will affect the entire system of care. We really are in a very challenging period because there are so many things coming at stakeholders at the same time. The workforce problems are also posing challenges. These are interesting times for sure, but we’re hoping to come out of these times with a better way of supporting people and part of that includes listening to honest feedback.
Forum Discussion: The following includes a numbered list of questions to solicit feedback. The direct feedback generated from attendees follows each prompt, and is italicized, with any responses to questions/comments indented, bulleted, and identified by the speaker, as relevant.
1. What’s working well?
-Reorganizing and developing leadership in the MDSOAB have been wonderful.
-The State has been great at including voices/feedback of and creating opportunities for self-advocates; true inclusion is paramount, and this has been amazing. There has been a real feeling of everyone working together.
-State agencies/offices have worked very collaboratively. They have attended so many meetings and stakeholder groups, including regularly attending these Coalition meetings and being invested. They’re truly invested in the system. Everyone has been very responsive to requests – for information, data, more user-friendly ways to get resources from the website, etc.
-My daughter’s transportation through Midcoast has gotten much more reliable. They have created a system where if they change the time of her pickup, they always call beforehand, even if it’s only a 15-minute change. They never used to do that; this has been a major improvement.
-My friend with disabilities was able to become a homeowner – a major accomplishment that perhaps wouldn’t have been possible previously.
-The Department gave attention and support to New Mainers over the last year to build bridges between the Department and the provider community workforce. This was fantastic.
-Having PCP (Person Centered Planning) meetings be more person-directed has been a really good, nice change. Even being able to choose who is in the room and not having to invite people who the person feels might not be helpful to the process has been helpful.
2. What could be improved?
-When Lifespan hits there will be changes, and whether it works or not will depend on established relationships and true partnerships with all stakeholders continuing. There is worry about Lifespan truly addressing the continuum of abilities and needs.
-Transportation remains an issue, though there have been some areas of improvement. Some transportation providers could be better at answering the phone when consumers try to make contact.
-People with disabilities don’t always handle change well and need time to prepare/adjust – educating people on this would be helpful.
-Self-directed services could be improved. People who have chosen that model have been struggling – one person has been waiting for eight months to receive a payment for something that they’re entitled to/eligible for. When something is submitted it’s submitted to the State first, the State comes back and says it’s not covered, but then there’s no way to appeal etc. because it’s just an email. It’s not going as smoothly as it could and people are waiting for something like a payment on their phone that they’ve been approved for and then they go into default, etc.
-My son has Section 21 and I realized last week that his agency has not received payment since June 20 and coordination between my son’s case manager and the agency hasn’t occurred. I keep asking who I contact to fix this because it is approved, and he’s entitled to it.
-In the past people used to be able to implement their own stuff. Now, no one can add anything until the Case Manager gets approval. This holds up the PCP process.
3. If you were in charge, what would you do/what changes would you make?
-Address the mortality rate.
Cullen: I want to thank everyone for their comments, and Bonnie for collecting this feedback. We will be sure that all of feedback provided today is incorporated into the minutes and given to her for the MDSOAB. If people have additional comments on how things are working and how things could be improved, please email Bonnie ([email protected]). Thank you, Bonnie, for being here today!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Craig Patterson: I first want to thank Bonnie for that very productive discussion! I took extensive notes, and all the feedback has been very valuable information. One of our newest developments is our work with the Division of Licensing to develop a new HCBS Agency Licensing Rule. For a long time, we have had a hard time working to resolve issues that may be related to actual license, who holds the license, and who holds oversight for the license, etc. This Licensing Rule applies to residential settings, and for the first time will also apply to community support and employment programs. We will implement this Rule for all waiver-funded HCBS serving people with ID/DD, Autism, or Brain Injury, to actually cover licensing rules related to all of that. In the past we could not take corrective actions that were really needed. We’re working with a consultant agency that is well-known nationally to help us implement this Rule, which I believe will be very productive for us.
Bonnie: A question that has come up a lot: If a person is living in a one- or two-person home, will the new Licensing Rule apply?
Craig: That’s the million-dollar question that we’re trying to answer. We hope we’re going to be able to have it apply to everyone across the board, but there are a lot of other implications to that which we’re trying to sort through. We’ll be providing our draft for public comment this fall.
Craig: We will also be submitting our Lifespan plan to CMS (Centers for Medicare and Medicaid Services) sometime this fall. We’re taking multiple actions across the board to support Lifespan and make it a workable program.
Bonnie: Will there be an opportunity for public comment prior to the Plan being submitted to CMS?
Craig: I believe so, but I’d have to double check. I know that we will continue to solicit stakeholder input because it has been absolutely essential. Members, family members, providers, and other stakeholders have been very candid in sharing their experiences with us and what will help. We hope that CMS agrees.
-It was asked how soon prior to submission will the Plan be made available and how soon prior to submission would the opportunity for public comment take place?
Craig: I’m not sure, I’ll have to take that question back to management.
Laura Cordes – MACSP: There isn’t a specific timeframe. There is a 30-day public comment period. The Department is required to take those comments and document their responses in their final application to CMS. The time between this process and submission is an unknown. Throughout this whole process I know the State wanted to avoid a Demonstration Waiver (1115). My latest understanding is that CMS settled with the State on the 1915c.
Craig: We think that CMS will go along with that plan now, but further discussion is ongoing. They haven’t given us a final answer. We’re hoping to have this figured out fairly soon.
Sara Fleurant: We are seeking responses from individuals receiving waiver services, family members of individuals receiving waiver services, and providers. Your valuable feedback will inform us of ways to support individuals receiving waiver services more effectively in maintaining housing that best meets their needs. This survey should take about 5 minutes to complete and will be open for responses until August 30th, 2024. Please feel free to share this survey with individuals receiving waiver services and family members of individuals receiving waiver services. https://forms.office.com/g/0Dr3SmnDTq
Craig: We also continue to work on rate setting. We hope to provide an update on that fairly soon.
-It was asked if when the rates come out if they will be in draft form or if they’ll be implemented.
Craig: I’m not certain. I suspect we’ll have to go through some type of announcement phase, which might involve a public hearing but I’m not entirely sure.
Cullen: Thank you both for being here and for providing all of this information!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/ocfs -No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling had to leave the meeting early but sent the following update via email:
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Sammy-Ellie MacKinnon: I wanted to remind the group that ThriveTogether Maine, a collaboration between Disability Rights Maine, The Maine Coalition Against Sexual Assault, Speaking Up For Us, & The Maine Association For Community Service Providers is conducting focus groups this August. We are connecting with people across our state to discuss how to improve services for survivors of sexual violence and how to make those services more accessible to all.
We are hosting two opportunities for parents, guardians, and family members of adults with intellectual and developmental disabilities to join us in focus groups to discuss services and potential improvements.
The first opportunity is being held tomorrow, August 13th online by Zoom from 3pm to 5pm. We are also offering an in person group on August 20th at the Curtis Memorial Library Merrill Meeting Room in Brunswick from 4:30-6:30pm.
If you are interested in participating or getting more information, please reach out to me at 207-626-2774 extension 260, or by email at [email protected]. You can also register online here.
(Click here for the minutes which feature a presentation on ThriveTogether Maine.)
Cullen: Thank you for raising awareness and disseminating this survey. It’s a very important topic that disproportionally affects people with ID/DD who can be quite vulnerable. Thank you again and thank you for being here!
Federal & Housing Updates:
Cullen:
State Legislature Update:
Cullen: The whole 132nd Legislature will be elected in November. Every seat in the Legislature is up for election/re-election this fall, with about 1/3 of seats expected to turn over. Committees will change. There are Legislators terming out. There are contested elections. Please reach out to candidates running for office, educate them on the needs of people with disabilities in Maine, and continue to raise your voice and tell your stories so that people elected to the Legislature are well-poised to make good decisions in the 132nd Legislature. Sharing personal stories is the most effective form of advocacy and is essential to ensure we move the needle forward. Thank you all!
Other Business: None
The next meeting will be on Monday, September 9, 2024, 12-2:00pm, via Zoom*
Featured Speaker and Topic: TBD
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2024 the October and November meetings will be the 3rd Monday due to the holidays)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Bonnie Jean Brooks, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: 2024 MDSOAB Annual Forum.
Cullen: Each year the MDSOAB holds community forum(s) to pull people familiar with and/or receiving services together to provide input on how well services are working, how they might be improved, and to provide general feedback. Today we are joined by Bonnie Jean Brooks, Executive Director of the MDSOAB to do just that. This forum is designed to start a dialogue. This is one of the primary reasons this Coalition exists – to disseminate information, solicit feedback, and work to optimize the system of care for people with intellectual/developmental disabilities (ID/DD) in Maine. This year will be similar to the past few years’ MDSOAB annual forums. All feedback will be anonymous so please feel free to be very candid. We want you all have Bonnie’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well. She will continue to welcome it as she puts a report together. Thank you, Bonnie, for being here today and for your extensive career, expertise, and leadership!
Bonnie-Jean Brooks: Thank you so much for your kind words and for having me! I don’t consider being the Executive Director of the MDSOAB work. I continue doing what I hope is the right thing, listening to people – their concerns and their needs. We had two forums last week as well, which some of you attended. I’m very grateful for everyone who has attended!
The role of the MDSOAB is described in state statute Title 34-B in Chapter 1. In order to carry out its oversight and advisory functions, the board has several powers and duties. One of our roles is “to hold at least one hearing or other forum each year that is open to the public in order to gather information about the availability, accessibility and quality of services available to persons with intellectual disabilities or autism and their families.” The MDSOAB is responsible for overseeing and advising the Maine Department of Health and Human Services (DHHS) and other relevant state departments about challenges, issues, and successes in the system of care for adults with intellectual and developmental disabilities (IDD) and autism spectrum disorder (ASD) in Maine. The MDSOAB advises the state and makes recommendations for improvement. Each year the MDSOAB spends time listening to Mainers as they share their thoughts, insights, and recommendations about the current system of care. The MDSOAB has been holding annual forums here for more than seven years. This year we are holding a forums at today’s meeting of the Maine Coalition for Housing and Quality Services, as well as additional opportunities to participate (click here for more information). We will also be pleased to accept written comments ([email protected]). Feedback collected about services for people with ID/DD from these forums will be written into a report and presented to DHHS, as well other State agencies.
The MDOAB has a positive working relationship with our state partners and others. We hope to strengthen our collective systems of support by working together. We will listen to your feedback and share it with those partners. We’re in the midst of a lot of systems change and a lot of excitement – not just in Maine but in states all over the country. There are a lot of pretty significant Federal laws that have passed that will affect the entire system of care. We really are in a very challenging period because there are so many things coming at stakeholders at the same time. The workforce problems are also posing challenges. These are interesting times for sure, but we’re hoping to come out of these times with a better way of supporting people and part of that includes listening to honest feedback.
Forum Discussion: The following includes a numbered list of questions to solicit feedback. The direct feedback generated from attendees follows each prompt, and is italicized, with any responses to questions/comments indented, bulleted, and identified by the speaker, as relevant.
1. What’s working well?
-Reorganizing and developing leadership in the MDSOAB have been wonderful.
-The State has been great at including voices/feedback of and creating opportunities for self-advocates; true inclusion is paramount, and this has been amazing. There has been a real feeling of everyone working together.
-State agencies/offices have worked very collaboratively. They have attended so many meetings and stakeholder groups, including regularly attending these Coalition meetings and being invested. They’re truly invested in the system. Everyone has been very responsive to requests – for information, data, more user-friendly ways to get resources from the website, etc.
-My daughter’s transportation through Midcoast has gotten much more reliable. They have created a system where if they change the time of her pickup, they always call beforehand, even if it’s only a 15-minute change. They never used to do that; this has been a major improvement.
-My friend with disabilities was able to become a homeowner – a major accomplishment that perhaps wouldn’t have been possible previously.
-The Department gave attention and support to New Mainers over the last year to build bridges between the Department and the provider community workforce. This was fantastic.
-Having PCP (Person Centered Planning) meetings be more person-directed has been a really good, nice change. Even being able to choose who is in the room and not having to invite people who the person feels might not be helpful to the process has been helpful.
2. What could be improved?
-When Lifespan hits there will be changes, and whether it works or not will depend on established relationships and true partnerships with all stakeholders continuing. There is worry about Lifespan truly addressing the continuum of abilities and needs.
-Transportation remains an issue, though there have been some areas of improvement. Some transportation providers could be better at answering the phone when consumers try to make contact.
-People with disabilities don’t always handle change well and need time to prepare/adjust – educating people on this would be helpful.
-Self-directed services could be improved. People who have chosen that model have been struggling – one person has been waiting for eight months to receive a payment for something that they’re entitled to/eligible for. When something is submitted it’s submitted to the State first, the State comes back and says it’s not covered, but then there’s no way to appeal etc. because it’s just an email. It’s not going as smoothly as it could and people are waiting for something like a payment on their phone that they’ve been approved for and then they go into default, etc.
-My son has Section 21 and I realized last week that his agency has not received payment since June 20 and coordination between my son’s case manager and the agency hasn’t occurred. I keep asking who I contact to fix this because it is approved, and he’s entitled to it.
- Craig Patterson, DHHS-OADS: I want you to know this is affecting many people as a result of our conversion to Evergreen. There are a whole bunch of requirements that go along with submitting for payment and part of that has to do with the PCP documents. Receiving the PCP in a timely and a quality manner has been a barrier to us being able to provide the funding. I don’t know the specifics of your particular issue, but this could be part of it. Please feel free to email me directly ([email protected]) and I can look into this. We’ve also provided direct support to provider agencies, which involve our Resource Coordinators.
- MACSP (Maine Association for Community Service Providers) has encouraged its members to let their Executive Directors know about issues with Evergreen as MACSP is meeting with the State to work to improve these issues.
-In the past people used to be able to implement their own stuff. Now, no one can add anything until the Case Manager gets approval. This holds up the PCP process.
- Craig: We have started down the road of refocusing on the PCP process because we had drifted away from that. What Members told us was that the Plans were not theirs – that the Plans were all about the agency etc. That’s what led us down this road and why others can’t make changes to the Plan – we don’t want things added into the Plan without the individual’s prior knowledge. The Federal government has put this requirement in front of us and we need to really work to make our system as responsive as we possibly can during this time, then focus on resolving the underlying Evergreen issues. Which we are doing. When EIS was originally released years ago there were constant issues. Anytime you take a huge information system and make dramatic changes and ask for things it was not providing previously, there’s a whole lot of risk and I think we’ve run into some of the realities of that risk but we’re working to make it better. I hope people will give us a little bit of time to work through these challenges.
- Craig: The PCP will be at the center of all of our operations. People can make their own decisions, and if someone wants to engage in the PCP or an alternative to the PCP process, I can’t say that we would rule that out but the primary mechanism we’re looking at for planning is the PCP.
3. If you were in charge, what would you do/what changes would you make?
-Address the mortality rate.
- Bonnie: When the OIG (Office of Inspector General) came to Maine a few years ago, they stated that Maine wasn’t doing a mortality review in compliance with Federal requirements. The MDSOAB engaged in legislative advocacy that resulted in a Mortality Review Panel. It’s required to meet at least quarterly and collect data about the deaths of people with disabilities as well as people who are aging. It analyzes that data for any trends. The 2023 Annual Report was completed and is available online. The MDSOAB has reviewed that, and a member of the MDSOAB is on that Panel and has kept us informed. We’re very excited this data is being reviewed. One thing that emerged was the challenge of older Mainers with disabilities who are on waiting lists and perhaps are aging faster than if they had been receiving the services that they needed. This is an area of concern for us and that we’re taking a look at.
- Bonnie: We have not been as involved in that as perhaps we should be – we don’t have a lot of data around that. We know that there will be more information available and more systems in place for this transition when the Lifespan Waiver is implemented. There’s a lot of activity going on now to prepare for that transition.
- Bonnie: This isn’t my area of expertise. I know that the Department has been very forthcoming about the challenges with Evergreen.
- Craig: It is a difficult subject, but we are putting a variety of auditing mechanisms in place with Evergreen, but I don’t have specifics right now related to particular Evergreen tools that would help to prevent financial exploitation. I suspect that in terms of actual client accounts where there is actual money being held, that’s not directly related to Evergreen. You have perhaps pointed out a gap that I’m happy to take back.
- Bonnie: An MDSOAB Board Member and I attended the all-day Aging Summit in Augusta. As we listened to the presentations, we were recognizing that there weren’t conversations specifically about people with disabilities who are aging. We began to ask ourselves if the presenters and organizers recognize that there are some really unique needs of people with disabilities and who are aging, and specifically people with ID/DD who are aging? We asked that more information be provided next year on this. We passed this information on the MACSP as well. There are resources out there that we believe aren’t widely known about that would be great to disseminate information on.
- Bonnie: One of the Innovation Grants pertains to this. If there’s a medical situation that arises, instead of having to go to the hospital they’re able to call an agency that’s doing work all over the country that’s owned and run by doctors. The doctors act as middle-people and make contact with the hospital or the primary care provider. With this, people are going to the hospital less often and if they do, they’re not going and waiting for hours because this middleman set of doctors is paving the way on the hospital end of the equation. There will be a showcase of the Innovation projects in the spring of 2025, and I suspect this might be one because it’s phenomenal.
- Bonnie: We have a statutory obligation to point out to OADS what they’re required to do etc. While we’re very sensitive to this system redesign and the stress on OADS and other stakeholders, the MDSOAB cannot ignore its duty to continue to remind the Department of its responsibility. We have a very positive relationship with the Department and will continue to as we press forward.
Cullen: I want to thank everyone for their comments, and Bonnie for collecting this feedback. We will be sure that all of feedback provided today is incorporated into the minutes and given to her for the MDSOAB. If people have additional comments on how things are working and how things could be improved, please email Bonnie ([email protected]). Thank you, Bonnie, for being here today!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Craig Patterson: I first want to thank Bonnie for that very productive discussion! I took extensive notes, and all the feedback has been very valuable information. One of our newest developments is our work with the Division of Licensing to develop a new HCBS Agency Licensing Rule. For a long time, we have had a hard time working to resolve issues that may be related to actual license, who holds the license, and who holds oversight for the license, etc. This Licensing Rule applies to residential settings, and for the first time will also apply to community support and employment programs. We will implement this Rule for all waiver-funded HCBS serving people with ID/DD, Autism, or Brain Injury, to actually cover licensing rules related to all of that. In the past we could not take corrective actions that were really needed. We’re working with a consultant agency that is well-known nationally to help us implement this Rule, which I believe will be very productive for us.
Bonnie: A question that has come up a lot: If a person is living in a one- or two-person home, will the new Licensing Rule apply?
Craig: That’s the million-dollar question that we’re trying to answer. We hope we’re going to be able to have it apply to everyone across the board, but there are a lot of other implications to that which we’re trying to sort through. We’ll be providing our draft for public comment this fall.
Craig: We will also be submitting our Lifespan plan to CMS (Centers for Medicare and Medicaid Services) sometime this fall. We’re taking multiple actions across the board to support Lifespan and make it a workable program.
Bonnie: Will there be an opportunity for public comment prior to the Plan being submitted to CMS?
Craig: I believe so, but I’d have to double check. I know that we will continue to solicit stakeholder input because it has been absolutely essential. Members, family members, providers, and other stakeholders have been very candid in sharing their experiences with us and what will help. We hope that CMS agrees.
-It was asked how soon prior to submission will the Plan be made available and how soon prior to submission would the opportunity for public comment take place?
Craig: I’m not sure, I’ll have to take that question back to management.
Laura Cordes – MACSP: There isn’t a specific timeframe. There is a 30-day public comment period. The Department is required to take those comments and document their responses in their final application to CMS. The time between this process and submission is an unknown. Throughout this whole process I know the State wanted to avoid a Demonstration Waiver (1115). My latest understanding is that CMS settled with the State on the 1915c.
Craig: We think that CMS will go along with that plan now, but further discussion is ongoing. They haven’t given us a final answer. We’re hoping to have this figured out fairly soon.
Sara Fleurant: We are seeking responses from individuals receiving waiver services, family members of individuals receiving waiver services, and providers. Your valuable feedback will inform us of ways to support individuals receiving waiver services more effectively in maintaining housing that best meets their needs. This survey should take about 5 minutes to complete and will be open for responses until August 30th, 2024. Please feel free to share this survey with individuals receiving waiver services and family members of individuals receiving waiver services. https://forms.office.com/g/0Dr3SmnDTq
Craig: We also continue to work on rate setting. We hope to provide an update on that fairly soon.
-It was asked if when the rates come out if they will be in draft form or if they’ll be implemented.
Craig: I’m not certain. I suspect we’ll have to go through some type of announcement phase, which might involve a public hearing but I’m not entirely sure.
Cullen: Thank you both for being here and for providing all of this information!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/ocfs -No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling had to leave the meeting early but sent the following update via email:
- DVR’s four new I/DD targeted VR Counselors are in place and working closely with OADS to support coordinated service delivery.
- OADS and Bureau of Rehabilitation Services (BRS) have issued some new staff guidance concerning young adults who receive VR supported employment and the transition to OADS LTS.
- DVR has a new Assistant Director – Sean Keegan – formerly the regional manager for Lewiston/Augusta.
- The Division for the Blind and Visually Impaired (DBVI) is hiring a new Assistant Director to replace Peter Diplock, who retired. DBVI is also repurposing a position to serve as a Rehabilitation Consultant for Youth and Family Services for clients who are blind or visually impaired.
- Lots happening with summer work experience, employer tours, and Career Exploration bus trips for youth!
- Maine Association of People Supporting Employment First (APSE) is planning a fall conference in Bangor on November 13th.
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Sammy-Ellie MacKinnon: I wanted to remind the group that ThriveTogether Maine, a collaboration between Disability Rights Maine, The Maine Coalition Against Sexual Assault, Speaking Up For Us, & The Maine Association For Community Service Providers is conducting focus groups this August. We are connecting with people across our state to discuss how to improve services for survivors of sexual violence and how to make those services more accessible to all.
We are hosting two opportunities for parents, guardians, and family members of adults with intellectual and developmental disabilities to join us in focus groups to discuss services and potential improvements.
The first opportunity is being held tomorrow, August 13th online by Zoom from 3pm to 5pm. We are also offering an in person group on August 20th at the Curtis Memorial Library Merrill Meeting Room in Brunswick from 4:30-6:30pm.
If you are interested in participating or getting more information, please reach out to me at 207-626-2774 extension 260, or by email at [email protected]. You can also register online here.
(Click here for the minutes which feature a presentation on ThriveTogether Maine.)
Cullen: Thank you for raising awareness and disseminating this survey. It’s a very important topic that disproportionally affects people with ID/DD who can be quite vulnerable. Thank you again and thank you for being here!
Federal & Housing Updates:
Cullen:
- 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) 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.
- FY 25 Budget – Congress is in the midst of FY 25 budget negotiations. Advocates are requesting the highest funding increases possible for programs related to housing and homelessness, though the FY 25 budget will have to remain within the tight budget caps of the “Fiscal Responsibility Act of 2023,” which allows for a spending increase of only 1% in FY25 compared to FY24.
- 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: Two weeks ago, 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.
- 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:
Cullen: The whole 132nd Legislature will be elected in November. Every seat in the Legislature is up for election/re-election this fall, with about 1/3 of seats expected to turn over. Committees will change. There are Legislators terming out. There are contested elections. Please reach out to candidates running for office, educate them on the needs of people with disabilities in Maine, and continue to raise your voice and tell your stories so that people elected to the Legislature are well-poised to make good decisions in the 132nd Legislature. Sharing personal stories is the most effective form of advocacy and is essential to ensure we move the needle forward. Thank you all!
Other Business: None
The next meeting will be on Monday, September 9, 2024, 12-2:00pm, via Zoom*
Featured Speaker and Topic: TBD
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2024 the October and November meetings will be the 3rd Monday due to the holidays)
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].