May 8, 2023
Minutes
Minutes
Attendees via Zoom: Abby Stivers, Amanda Parker, Andrew Taranko, Ann-Marie Mayberry, Betsy Hopkins, Brenda Smith, Bryan Gordon, Carol Snyder, Carrie Hobbs Guiden, Chris Call, Catherine Thibedeau, Cathy Bustin, Darcy Milburn, Darla Chafin, David Cowing, Debbie Dionne, Heidi Mansir, Helen Hemminger, Jamie Whitehouse, Janet DiBiase, Julianne Zaharis, Kim Humphrey, Kristin Overton, Lane Simsarian, Laura Cordes, Lily Lin, Liz Hansen, Lorraine DeFreitas, Luc Nya, LyAnn Grogan, Margaret Cardoza, Michaela York, Misty Marston, Rachel Dyer, RJ Adler, Scott McKeough, Shelly Zielinski, Staci Converse, Susan Farwell, Mark Kemmerle, Teresa Barrows, Titus O’Rourke, Vickey Merrill, Cullen Ryan, and 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. For the sake of time, Cullen read the names of participants.
Featured Speaker: Carrie Hobbs Guiden, SEO of Chapters and Community at The Arc thearc.org. Topic: An overview of federal policy, storytelling as a tool for advocacy, and supported decision-making.
Cullen: I am pleased to welcome Carrie Hobbs Guiden, SEO of Chapters and Community at The Arc who will be presenting an overview of federal policy, storytelling as a tool for advocacy, and supported decision-making. Thank you for being with us today, Carrie!
Carrie Hobbs Guiden: Thank you for having me, it’s great to be here. Tomorrow will mark my being with The Arc national office for one year, but I’ve been involved with The Arc for many years. Maine’s interest in The Arc is very exciting!
Darcy Milburn: It’s wonderful to join you all and to see some folks that I’ve corresponded with! The Arc has a very strong reputation on Capitol Hill, known for its grassroots advocacy efforts. I’m going to give an overview of policy priorities, some more in-depth information on a few key bills, and some more generalized information. I also want to thank everyone for all of their fierce advocacy efforts on numerous federal initiatives.
Begin presentation (Click here for the presentation):
Darcy: The Arc's Priority Federal Policy Issues – There are two proposed Rules CMS (Centers for Medicare and Medicaid Services) is putting out to work to improve Home and Community-Based Services (HCBS) and Medicaid. It’s highly technical administrative and regulatory work that we’ll be providing comments on to ensure the voices and needs of people with intellectual/developmental disabilities (ID/DD) are included in CMS’ plans.
We work to be proactive and introduce legislation that will solve long-standing issues. One of these long-standing issues is the SSI Asset Test. One key bill we’re working with Senate staff to reintroduce is the bipartisan SSI Savings Penalty Elimination Act. Senator Collins heard from the disability community in Maine, and thanks in part to this Coalition’s advocacy she did and agreed to sign on to the bill. We’re also working on bills that would address the long-standing issue of the marriage penalty for Disabled Adult Child (DAC) beneficiaries if they marry. We’re working on a number of health policy priorities and related legislation.
Carrie: Supported Decision-Making – I know that Maine is fairly ahead of the curve with SDM, so I apologize in advance if this information is already known to the group. We’ve stayed away from the language that SDM is an alternative to guardianship. We didn’t want people under guardianship to think that they couldn’t work with their guardian to learn about SDM and receive support with making decisions. There are common threads with SDM across the board:
There are also some common misconceptions about SDM, all of which are not true:
Maine has codified SDM as a less restrictive alternative to guardianship and conservatorship. Statutes require that courts first find that the adult cannot make or communicate decisions, even with the use of supported decision-making and other supportive services, before appointing a guardian or conservator.
Darcy: Storytelling & Advocacy – We organize The Arc’s network –people with disabilities, family members, staff, friends –to take action to support the full inclusion and rights of people with disabilities. Stories and storytelling are very powerful tools to accomplish this. Stories educate, motivate, make policy real and human, and are helpful in gaining media attention. Advocacy stories explain how policies impact your life and why legislators should make a policy change.
Darcy: When we’re using storytelling for advocacy purposes, it is most successful when they’re short and focused on one specific issue. It’s also important to be accurate, precise, concise, and nice! This takes practice, but it’s a very effective advocacy tool. You can visit Thearc.org/action to take action on specific policy initiatives and sign up for our email list.
Discussion:
-It was stated that there was a bill in the previous Congress, HR 7676, the Home Modifications for Accessibility Act, that offered a tax break for people making accessible home modifications. It was not introduced in the Senate, and it did not pass. It was asked if the reintroduction of this bill in the current Congress is something that The Arc would support.
Darcy: Last year I worked for the Chair of the House Ways and Means Committee on Health. I would want to check with our policy person who works most closely on housing before giving a definitive answer on the work she may be doing to support the bill. I know recently she’s been working on a tax credit to support building new accessible housing.
Carrie: I remember that legislation from last year and I do think we supported it. We can follow up with our housing person.
Kim Humphrey – Community Connect Maine: One of our main focuses is storytelling. I truly believe it’s the best advocacy tool to effect policy change. Right now, we’re focusing on digital stories, but there are so many different ways to tell stories.
Carrie: How is SDM working in Maine?
Staci Converse – Disability Rights Maine (DRM): I can help answer that. I want to thank Margaret Cardoza who brought SDM to Maine years ago. It’s in the Probate Code that it must be an alternative. People know about it. People are talking about it. However, it’s hard to know how it’s affecting Probate judges. But it’s amazing to have codified in Maine’s Probate Code.
-A self-advocate stated that with any change it takes a long time to see the fruits of that change. It’s been a slow process to have an entire system adjust to SDM, so that there’s comfort for all of the parties involved.
Carrie: SDM was a really difficult thing for judges to wrap their brains around at first. They saw guardians and conservators as protectors, when that may not always be the case and there are better ways to accomplish that goal. It took a long time for that mindset to change.
-A parent stated that she supports SDM, it’s an extension of good parental practices. However, she stated that her son falls into a category (with a specific disability) that isn’t covered here and requires more thought because for her son oversight is required to keep him alive. She expressed concerns that Disability Rights Maine may not have used the most thoughtful approach for her son and people like him, for whom guardianship is essential.
Carrie: I can’t speak to specifics in Maine, but when we started this process in Tennessee, we came out of the gate too strong and had to step back. SDM is just what you said – it’s an extension of good parenting. At first it appeared that we didn’t support guardianship at all, which wasn’t the case. We shifted our messaging accordingly and is one of the reasons we don’t use the language “alternative to guardianship.” We slowed things down, really listened to everyone, to ensure we weren’t hurting one group etc.
Staci: You’re always welcome to reach out to me. I’m always glad to speak with you. We are very much a client-driven advocacy organization and take the responsibility to advocate for the individual very seriously. This sometimes can create conflict, but we work hard to work with families. I agree with Carrie, you can always modify guardianships etc. Someone might need some help with some things but not all. What had been in place prior to SDM is that people were under full guardianship, not just for the areas that they need assistance with making decisions but for every decision.
-The parent who had previously commented stated that this information was helpful.
Cullen: Thank you Carrie and Darcy for taking the time to be here today, for giving us so much information, and underscoring the effectiveness and power of our voices. I also want to ensure that this forum is inclusive of everyone and gives a voice to everyone, so I want to commend the parent who took the risk of raising her voice and expressing concerns. That’s hard to do, but it’s imperative that it happens. Thank you all again, well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Bonnie Jean Brooks, Interim Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB) mainedsoab.org. Topic: 2023 MDSOAB Annual Forum (part 1 of 2).
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, Interim 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 make the system of care better for people with intellectual/developmental disabilities (ID/DD) in Maine. This year will be similar to the past few years’ MDSOAB annual forums, with a handful of identified questions/prompts on which the group will focus and comment. We want you all have Bonnie’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well.
Bonnie-Jean Brooks: The MDSOAB has been holding annual forums here for more than six years. 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.” This year we are holding 1-hour Forums at the May 16th and June 20th meetings of the Maine Coalition for Housing and Quality Services. We will also be pleased to accept written comments. Also, we plan to reach out to individuals receiving services in ways and places that are convenient for them. 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.
Forum Discussion: The following includes a numbered/bulleted list of initiatives and questions for consideration. The direct feedback generated from attendees follows each prompt, and is italicized, with any responses to questions/comments indented and identified by the speaker, as relevant. Please respond to the following prompts concerning the performance of the provider community and ANY state agency in the past year and share your goals and priorities for the future.
1. What things have gone well and deserve our acknowledgement? – The Department’s current outreach to stakeholders and responsiveness to comments/feedback is the strongest it’s ever been. The emphasis on employment has been great. The response to the pandemic was pretty extraordinary. The formation of specialized committees/workgroups so stakeholders and the provider community can have input before decisions are made. The use of FMAP funds for retention/recruitment bonuses and the innovation grants. The reframing of the language around behavior to be more communication focused. The work that was done with START. The Department’s willingness to look at what services are needed and look at where the system’s gaps might be. Transparency and collaboration have been phenomenal over the past couple of years. Ease of accessing information through the quarterly updates and various specific webpages for initiatives. The inter-agency collaboration and removing silos, working towards dedicated and formalized places at the table so that we’re not continuing silos but moving towards common goals, not just in the area of transition but in every capacity to support students with ID/DD. A long-standing issue has been the transition from youth to adult services and DHHS (OADS/OCFS) Department of Education have really tackled that in a very big way. The transition from OCFS to OADs was flawless for my daughter, and she was moving back to Maine from out of state – this is outstanding. There has been some very open and transparent communication between the Department and the MDSOAB over the last few years, which has been very positive and beneficial – leading to some very positive outcomes. The Division for the Deaf, Hard of Hearing and Late Deafened has been doing great work.
2. Have any new issues arisen this year that have gone unaddressed or under-addressed due to unusual demands on the system? – Transportation is under addressed. Crisis Services are under addressed – specifically knowing what they can and can’t do and how they interact with the hospitals. Dental services remain very difficult to access/receive – especially for people who need sedation dentistry. We also lack adult day programs for people with high needs requiring 2-to-1 staffing. Unmet needs on Person Centered Plans (PCP) have been an on-going issue for many people – they’re not being tracked and there’s been no forward movement on addressing them. There needs to be more mainstream and fluid communication regarding the PCP process. A major biller (Saddleback) has given notice so many people need to navigate or find another billing agent. It’s hard to onboard new agencies. The silo between ID/DD services and mental health remains and ought to be addressed – people with ID/DD experience mental health needs just like anyone else and we haven’t had best-practice approaches deployed to address that. A focus on youth in transition out of high schools, specifically regarding providing kids with disabilities the same opportunities as their peers, i.e., attending job fairs like other students not just how to apply for SSI etc. The term “special needs” has started to be used on the mental health side as well as OADS which has been confusing. My daughter has lost a lot due to staffing issues – she’s had a complete turnover of staff. The waitlists have gone under addressed for years. There is a silo between people with ID/DD and high medical needs and how HCBS can support them.
3. Many issues come up year after year at the Listening Sessions such as:
4. Do you have a specific recommendation that, if implemented, would dramatically improve an area of service? –
5. Do you have any specific recommendations related to the recruitment and retention of Direct Support Professionals? –
6. Do you have other comments or recommendations? –
Bonnie: You can email ([email protected]) or call me (207-944-9093) to provide feedback/comments on any of the topics/questions and I will incorporate those into the final report.
-It was asked if the MDSOAB would be willing to put the questions into a Survey Monkey to facilitate feedback in that manner.
Bonnie: Yes, we can do that!
-A self-advocate stated that attending these meetings and not being a parent can be challenging. Working on communication so that speaking up feels safe is imperative.
Bonnie: Thank you for this comment. The MDSOAB will be finding a way to reach out to people receiving services so that we can receive feedback from self-advocates when and how they feel most comfortable.
Cullen: I want to thank you for raising that. I welcome everyone’s voice and speaking their truth, even if the expression is imperfect. We will work together to find the meaning in what people express. Thank you for speaking up and modeling that so routinely and thoughtfully.
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. This is part one of two; we’ll feature Bonnie again next month. If people have additional comments on how things are working and how things could be improved, please come to the June meeting for part two of this forum, and/or email Bonnie ([email protected]). Thank you, Bonnie, for being here today!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: For up to date information on the work that is going on regarding our Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov)
For updates regarding OADS’ Innovation Pilots that are underway you can go to: HCBS Innovation Pilot Grants | Department of Health and Human Services (maine.gov). We’re putting together webinars to highlight the proposals we received for the Innovation Pilots. Be on the lookout for those dates.
There are also links to the public notices for Sections 21, 29, and 18 waiver amendments. We will accept comments through 11:59pm May 14th.
The Section 20 waiver amendment notice period has passed and the comment period is closed. Please let me know if you have additional questions.
Cullen: Thank you for this update and for being here today, Betsy!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows could not stay for the entire meeting, so Betsy Hopkins provided the update.
Betsy: We’ve hired a director and four (4) transition liaisons. That work is underway, which is fantastic. It would be great in a few months to give a more formal update on the Transition Project.
Cullen: That would be fantastic, thank you!
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed –
Titus O’Rourke: We applied for and received a $750,000 grant for Regional Transition Interagency Collaborations to create a seamless system of support by region. We’re really trying to work towards the system of seamless transition services and a continuum of support post-secondary – including people understanding what those systems are and how to access them.
SMACT (Southern Maine Advisory Council on Transition):
The last meeting of the school year was on 5/5 and featured Diane Luce with Maine Medical Center presenting on benefits counseling. This year the meetings were held quarterly – it is unknown if meetings will continue to be quarterly next year or not. The SMACT website and the Coalition website are cross-linked for convenience and broader information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy ([email protected]).
Disability Rights Maine (DRM) Update:
Cathy Bustin: A little of my background, I am a person with a disability which is what brought me into the work. This is my third go-around with DRM. I’m currently working on special projects, specifically pertaining to voting access, including voter rights, education, and training. I have three projects going on now. One is the REV UP Maine Coalition. REV UP is a national program affiliated with the American Association for People with Disabilities (AAPD). REV UP was started by AAPD in 2016 and stands for “Register, Educate, Vote, Use your Power!” REV UP’s mission is to build the power of the disability vote. People with disabilities can be in situations, sometimes life-long, when they haven’t had a chance to express their own voice or exert their own agency. This makes it hard to engage people with disabilities about the importance of voting. This is where advocacy and education around voting is critical. I’m very excited to initiate REV UP in Maine!
Cullen: Thank you for all of this information, and for all of your work! It would be fantastic to have you present on this at the future meeting.
LD 924 Task Force Update: No Update.
Federal & Housing Updates:
Cullen:
State Legislature Update
Laura Cordes – Maine Association for Community Service Providers (MACSP) had to leave the meeting early. The following is updated information from last month’s update/presentation:
As this group knows, there is a Google doc to support the MCHQS' interest in monitoring and engaging in bills of interest in the 131st Legislature. The doc contains updated lists of key committees and their members, and a table for Coalition members to track bills (click here for more information). It is open to all members to edit and update. Laura will continue to add to and update the bill list and update this group as we move forward throughout the session.
Bills continue to make their way through the Revisor’s Office and are being posted on the Legislature’s website (click here for the new Bill Tracking site).
For specific information on the bills below, along with others, please see the MCHQS Bills of Interest Page:
There are a lot of very helpful links in the Google Doc, including the Legislature’s webpage and the Testimony Submission webpage. Please feel free to add things to the Google Doc. or reach out to Laura with any questions!
Cullen: This is obviously a very busy Legislative Session. We will continue to keep this group apprised as bills continue to make their way through the Legislature, so please be on the lookout for action alerts. We will continue to be called upon over the next couple of months for our expertise so please raise your voice when the opportunity arises. I would encourage everyone in this group to keep raising their voices and telling their stories as it is that exact type of advocacy is very powerful and truly helps Legislators make good decisions for the system of care for people with ID/DD in Maine.
The next meeting will be on Monday, June 12, 2023, 12-2pm, via Zoom*.
Featured Speakers: Shea Bouchard, Accessible Housing Advisor, WheelPad. Topic: An overview of WheelPad and how it is expanding options for accessibility in housing for people with disabilities. And Bonnie Jean Brooks, Interim Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: 2023 MDSOAB Annual Forum (part 2 of 2).
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2023 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. For the sake of time, Cullen read the names of participants.
Featured Speaker: Carrie Hobbs Guiden, SEO of Chapters and Community at The Arc thearc.org. Topic: An overview of federal policy, storytelling as a tool for advocacy, and supported decision-making.
Cullen: I am pleased to welcome Carrie Hobbs Guiden, SEO of Chapters and Community at The Arc who will be presenting an overview of federal policy, storytelling as a tool for advocacy, and supported decision-making. Thank you for being with us today, Carrie!
Carrie Hobbs Guiden: Thank you for having me, it’s great to be here. Tomorrow will mark my being with The Arc national office for one year, but I’ve been involved with The Arc for many years. Maine’s interest in The Arc is very exciting!
Darcy Milburn: It’s wonderful to join you all and to see some folks that I’ve corresponded with! The Arc has a very strong reputation on Capitol Hill, known for its grassroots advocacy efforts. I’m going to give an overview of policy priorities, some more in-depth information on a few key bills, and some more generalized information. I also want to thank everyone for all of their fierce advocacy efforts on numerous federal initiatives.
Begin presentation (Click here for the presentation):
Darcy: The Arc's Priority Federal Policy Issues – There are two proposed Rules CMS (Centers for Medicare and Medicaid Services) is putting out to work to improve Home and Community-Based Services (HCBS) and Medicaid. It’s highly technical administrative and regulatory work that we’ll be providing comments on to ensure the voices and needs of people with intellectual/developmental disabilities (ID/DD) are included in CMS’ plans.
We work to be proactive and introduce legislation that will solve long-standing issues. One of these long-standing issues is the SSI Asset Test. One key bill we’re working with Senate staff to reintroduce is the bipartisan SSI Savings Penalty Elimination Act. Senator Collins heard from the disability community in Maine, and thanks in part to this Coalition’s advocacy she did and agreed to sign on to the bill. We’re also working on bills that would address the long-standing issue of the marriage penalty for Disabled Adult Child (DAC) beneficiaries if they marry. We’re working on a number of health policy priorities and related legislation.
Carrie: Supported Decision-Making – I know that Maine is fairly ahead of the curve with SDM, so I apologize in advance if this information is already known to the group. We’ve stayed away from the language that SDM is an alternative to guardianship. We didn’t want people under guardianship to think that they couldn’t work with their guardian to learn about SDM and receive support with making decisions. There are common threads with SDM across the board:
- Preserving one’s right to make choices.
- Everyone needs support at some point in their lives to make decisions –level of support and frequency vary.
- Informed choice.
- May be formal or informal.
There are also some common misconceptions about SDM, all of which are not true:
- People with ID/DD must have guardians appointed by the age of 18.
- People with ID/DD can’t make informed decisions.
- SDM requires legislation to be used.
- SDM must be formalized in a written agreement.
Maine has codified SDM as a less restrictive alternative to guardianship and conservatorship. Statutes require that courts first find that the adult cannot make or communicate decisions, even with the use of supported decision-making and other supportive services, before appointing a guardian or conservator.
Darcy: Storytelling & Advocacy – We organize The Arc’s network –people with disabilities, family members, staff, friends –to take action to support the full inclusion and rights of people with disabilities. Stories and storytelling are very powerful tools to accomplish this. Stories educate, motivate, make policy real and human, and are helpful in gaining media attention. Advocacy stories explain how policies impact your life and why legislators should make a policy change.
Darcy: When we’re using storytelling for advocacy purposes, it is most successful when they’re short and focused on one specific issue. It’s also important to be accurate, precise, concise, and nice! This takes practice, but it’s a very effective advocacy tool. You can visit Thearc.org/action to take action on specific policy initiatives and sign up for our email list.
Discussion:
-It was stated that there was a bill in the previous Congress, HR 7676, the Home Modifications for Accessibility Act, that offered a tax break for people making accessible home modifications. It was not introduced in the Senate, and it did not pass. It was asked if the reintroduction of this bill in the current Congress is something that The Arc would support.
Darcy: Last year I worked for the Chair of the House Ways and Means Committee on Health. I would want to check with our policy person who works most closely on housing before giving a definitive answer on the work she may be doing to support the bill. I know recently she’s been working on a tax credit to support building new accessible housing.
Carrie: I remember that legislation from last year and I do think we supported it. We can follow up with our housing person.
Kim Humphrey – Community Connect Maine: One of our main focuses is storytelling. I truly believe it’s the best advocacy tool to effect policy change. Right now, we’re focusing on digital stories, but there are so many different ways to tell stories.
Carrie: How is SDM working in Maine?
Staci Converse – Disability Rights Maine (DRM): I can help answer that. I want to thank Margaret Cardoza who brought SDM to Maine years ago. It’s in the Probate Code that it must be an alternative. People know about it. People are talking about it. However, it’s hard to know how it’s affecting Probate judges. But it’s amazing to have codified in Maine’s Probate Code.
-A self-advocate stated that with any change it takes a long time to see the fruits of that change. It’s been a slow process to have an entire system adjust to SDM, so that there’s comfort for all of the parties involved.
Carrie: SDM was a really difficult thing for judges to wrap their brains around at first. They saw guardians and conservators as protectors, when that may not always be the case and there are better ways to accomplish that goal. It took a long time for that mindset to change.
-A parent stated that she supports SDM, it’s an extension of good parental practices. However, she stated that her son falls into a category (with a specific disability) that isn’t covered here and requires more thought because for her son oversight is required to keep him alive. She expressed concerns that Disability Rights Maine may not have used the most thoughtful approach for her son and people like him, for whom guardianship is essential.
Carrie: I can’t speak to specifics in Maine, but when we started this process in Tennessee, we came out of the gate too strong and had to step back. SDM is just what you said – it’s an extension of good parenting. At first it appeared that we didn’t support guardianship at all, which wasn’t the case. We shifted our messaging accordingly and is one of the reasons we don’t use the language “alternative to guardianship.” We slowed things down, really listened to everyone, to ensure we weren’t hurting one group etc.
Staci: You’re always welcome to reach out to me. I’m always glad to speak with you. We are very much a client-driven advocacy organization and take the responsibility to advocate for the individual very seriously. This sometimes can create conflict, but we work hard to work with families. I agree with Carrie, you can always modify guardianships etc. Someone might need some help with some things but not all. What had been in place prior to SDM is that people were under full guardianship, not just for the areas that they need assistance with making decisions but for every decision.
-The parent who had previously commented stated that this information was helpful.
Cullen: Thank you Carrie and Darcy for taking the time to be here today, for giving us so much information, and underscoring the effectiveness and power of our voices. I also want to ensure that this forum is inclusive of everyone and gives a voice to everyone, so I want to commend the parent who took the risk of raising her voice and expressing concerns. That’s hard to do, but it’s imperative that it happens. Thank you all again, well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Bonnie Jean Brooks, Interim Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB) mainedsoab.org. Topic: 2023 MDSOAB Annual Forum (part 1 of 2).
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, Interim 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 make the system of care better for people with intellectual/developmental disabilities (ID/DD) in Maine. This year will be similar to the past few years’ MDSOAB annual forums, with a handful of identified questions/prompts on which the group will focus and comment. We want you all have Bonnie’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well.
Bonnie-Jean Brooks: The MDSOAB has been holding annual forums here for more than six years. 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.” This year we are holding 1-hour Forums at the May 16th and June 20th meetings of the Maine Coalition for Housing and Quality Services. We will also be pleased to accept written comments. Also, we plan to reach out to individuals receiving services in ways and places that are convenient for them. 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.
Forum Discussion: The following includes a numbered/bulleted list of initiatives and questions for consideration. The direct feedback generated from attendees follows each prompt, and is italicized, with any responses to questions/comments indented and identified by the speaker, as relevant. Please respond to the following prompts concerning the performance of the provider community and ANY state agency in the past year and share your goals and priorities for the future.
1. What things have gone well and deserve our acknowledgement? – The Department’s current outreach to stakeholders and responsiveness to comments/feedback is the strongest it’s ever been. The emphasis on employment has been great. The response to the pandemic was pretty extraordinary. The formation of specialized committees/workgroups so stakeholders and the provider community can have input before decisions are made. The use of FMAP funds for retention/recruitment bonuses and the innovation grants. The reframing of the language around behavior to be more communication focused. The work that was done with START. The Department’s willingness to look at what services are needed and look at where the system’s gaps might be. Transparency and collaboration have been phenomenal over the past couple of years. Ease of accessing information through the quarterly updates and various specific webpages for initiatives. The inter-agency collaboration and removing silos, working towards dedicated and formalized places at the table so that we’re not continuing silos but moving towards common goals, not just in the area of transition but in every capacity to support students with ID/DD. A long-standing issue has been the transition from youth to adult services and DHHS (OADS/OCFS) Department of Education have really tackled that in a very big way. The transition from OCFS to OADs was flawless for my daughter, and she was moving back to Maine from out of state – this is outstanding. There has been some very open and transparent communication between the Department and the MDSOAB over the last few years, which has been very positive and beneficial – leading to some very positive outcomes. The Division for the Deaf, Hard of Hearing and Late Deafened has been doing great work.
2. Have any new issues arisen this year that have gone unaddressed or under-addressed due to unusual demands on the system? – Transportation is under addressed. Crisis Services are under addressed – specifically knowing what they can and can’t do and how they interact with the hospitals. Dental services remain very difficult to access/receive – especially for people who need sedation dentistry. We also lack adult day programs for people with high needs requiring 2-to-1 staffing. Unmet needs on Person Centered Plans (PCP) have been an on-going issue for many people – they’re not being tracked and there’s been no forward movement on addressing them. There needs to be more mainstream and fluid communication regarding the PCP process. A major biller (Saddleback) has given notice so many people need to navigate or find another billing agent. It’s hard to onboard new agencies. The silo between ID/DD services and mental health remains and ought to be addressed – people with ID/DD experience mental health needs just like anyone else and we haven’t had best-practice approaches deployed to address that. A focus on youth in transition out of high schools, specifically regarding providing kids with disabilities the same opportunities as their peers, i.e., attending job fairs like other students not just how to apply for SSI etc. The term “special needs” has started to be used on the mental health side as well as OADS which has been confusing. My daughter has lost a lot due to staffing issues – she’s had a complete turnover of staff. The waitlists have gone under addressed for years. There is a silo between people with ID/DD and high medical needs and how HCBS can support them.
3. Many issues come up year after year at the Listening Sessions such as:
- Stabilizing the workforce – Still a major issue. A lot of staff turnover. My daughter has lost a lot due to staffing issues – she’s had a complete turnover of staff.
- Transportation – Still a major issue.
- Crisis services – Crisis Services are under addressed – specifically knowing what they can and can’t do and how they interact with the hospitals.
- Transition from child to adult services – A lot of progress, but work remains. A focus on youth in transition out of high schools, specifically regarding providing kids with disabilities the same opportunities as their peers, i.e., attending job fairs like other students not just how to apply for SSI etc.
- Communication –
- Navigating the system -
4. Do you have a specific recommendation that, if implemented, would dramatically improve an area of service? –
5. Do you have any specific recommendations related to the recruitment and retention of Direct Support Professionals? –
6. Do you have other comments or recommendations? –
Bonnie: You can email ([email protected]) or call me (207-944-9093) to provide feedback/comments on any of the topics/questions and I will incorporate those into the final report.
-It was asked if the MDSOAB would be willing to put the questions into a Survey Monkey to facilitate feedback in that manner.
Bonnie: Yes, we can do that!
-A self-advocate stated that attending these meetings and not being a parent can be challenging. Working on communication so that speaking up feels safe is imperative.
Bonnie: Thank you for this comment. The MDSOAB will be finding a way to reach out to people receiving services so that we can receive feedback from self-advocates when and how they feel most comfortable.
Cullen: I want to thank you for raising that. I welcome everyone’s voice and speaking their truth, even if the expression is imperfect. We will work together to find the meaning in what people express. Thank you for speaking up and modeling that so routinely and thoughtfully.
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. This is part one of two; we’ll feature Bonnie again next month. If people have additional comments on how things are working and how things could be improved, please come to the June meeting for part two of this forum, and/or email Bonnie ([email protected]). Thank you, Bonnie, for being here today!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: For up to date information on the work that is going on regarding our Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov)
For updates regarding OADS’ Innovation Pilots that are underway you can go to: HCBS Innovation Pilot Grants | Department of Health and Human Services (maine.gov). We’re putting together webinars to highlight the proposals we received for the Innovation Pilots. Be on the lookout for those dates.
There are also links to the public notices for Sections 21, 29, and 18 waiver amendments. We will accept comments through 11:59pm May 14th.
- MaineCare Notice of Agency Waiver Amendment-ME.1082: Home and Community Based Services for Members with Brain Injury | Department of Health and Human Services (Section 18)
- MaineCare Notice of Agency Waiver Amendment-ME.0159, Intellectual Disabilities or Autism Spectrum Disorder Waiver | Department of Health and Human Services (Section 21)
- MaineCare Notice of Agency Waiver Amendment-ME.0467, Support Services for Adults with Intellectual Disabilities or Autism Spectrum Disorder Waiver | Department of Health and Human Services (Section 29)
The Section 20 waiver amendment notice period has passed and the comment period is closed. Please let me know if you have additional questions.
Cullen: Thank you for this update and for being here today, Betsy!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows could not stay for the entire meeting, so Betsy Hopkins provided the update.
Betsy: We’ve hired a director and four (4) transition liaisons. That work is underway, which is fantastic. It would be great in a few months to give a more formal update on the Transition Project.
Cullen: That would be fantastic, thank you!
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed –
Titus O’Rourke: We applied for and received a $750,000 grant for Regional Transition Interagency Collaborations to create a seamless system of support by region. We’re really trying to work towards the system of seamless transition services and a continuum of support post-secondary – including people understanding what those systems are and how to access them.
SMACT (Southern Maine Advisory Council on Transition):
The last meeting of the school year was on 5/5 and featured Diane Luce with Maine Medical Center presenting on benefits counseling. This year the meetings were held quarterly – it is unknown if meetings will continue to be quarterly next year or not. The SMACT website and the Coalition website are cross-linked for convenience and broader information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy ([email protected]).
Disability Rights Maine (DRM) Update:
Cathy Bustin: A little of my background, I am a person with a disability which is what brought me into the work. This is my third go-around with DRM. I’m currently working on special projects, specifically pertaining to voting access, including voter rights, education, and training. I have three projects going on now. One is the REV UP Maine Coalition. REV UP is a national program affiliated with the American Association for People with Disabilities (AAPD). REV UP was started by AAPD in 2016 and stands for “Register, Educate, Vote, Use your Power!” REV UP’s mission is to build the power of the disability vote. People with disabilities can be in situations, sometimes life-long, when they haven’t had a chance to express their own voice or exert their own agency. This makes it hard to engage people with disabilities about the importance of voting. This is where advocacy and education around voting is critical. I’m very excited to initiate REV UP in Maine!
Cullen: Thank you for all of this information, and for all of your work! It would be fantastic to have you present on this at the future meeting.
LD 924 Task Force Update: No Update.
Federal & Housing Updates:
Cullen:
- Senate Appropriations Committee Begins work on FY 24 budget process: The Senate Committee on Appropriations, led by Chair Patty Murray (D-WA) and Ranking Member Susan Collins (R-ME), has begun planning a path towards a fiscal year (FY) 2024 budget agreement.
- Debt ceiling & Proposed Federal Budget Cuts: On 4/26, House Republicans passed a budget proposal that would lift the debt ceiling in exchange for dramatic cuts to domestic spending, including funding for affordable housing and homelessness programs. Per NLIHC: the Republican proposal known as the “Limit, Save, and Grow Act,” would cut federal domestic spending for FY 24 to FY 22 levels, resulting in at least a 23% reduction in funding for key programs, depending on how cuts are designed. The proposal would also limit future spending increases to 1% annually for 10 years, rescind unspent COVID-19 relief funds, and put in place rigid work requirements for some anti-poverty programs, among other harmful provisions. While the Republican budget proposal will not pass the Democratic-controlled Senate, its passage in the House could give more leverage to Republicans in budget negotiations, which could lead to steep spending cuts for affordable housing and homelessness programs.
State Legislature Update
Laura Cordes – Maine Association for Community Service Providers (MACSP) had to leave the meeting early. The following is updated information from last month’s update/presentation:
As this group knows, there is a Google doc to support the MCHQS' interest in monitoring and engaging in bills of interest in the 131st Legislature. The doc contains updated lists of key committees and their members, and a table for Coalition members to track bills (click here for more information). It is open to all members to edit and update. Laura will continue to add to and update the bill list and update this group as we move forward throughout the session.
Bills continue to make their way through the Revisor’s Office and are being posted on the Legislature’s website (click here for the new Bill Tracking site).
For specific information on the bills below, along with others, please see the MCHQS Bills of Interest Page:
- LD 886, An Act to Allow Clerks to Issue Absentee Ballots After the 3rd Business Day Before Election Day to Voters Who Have a Nonphysical Disability and Voters Who Support a Person with a Disability – The Committee issued a Divided Report.
- LD 35, An Act to Establish Adult Protective Services Training Requirements for Professionals Mandated to Report Suspected Abuse, Neglect or Exploitation to Enhance Protection of Incapacitated and Dependent Adults –It was signed into public law.
- LD 449 An Act to Authorize the Department of Health and Human Services to License Home-based and Community-based Services for Persons with an Intellectual Disability, Autism Spectrum Disorder or a Related Condition or an Acquired Brain Injury and Define Autism Spectrum Disorder – This bill was Passed to be Engrossed in both chambers. Now faces votes for enactment.
- LD 1250, An Act Regarding Paying Providers Sufficiently, Maintaining Short Waiting Lists and Creating a Cause of Action for Aggrieved Persons in the System of Care for Clients with Intellectual Disabilities or Autism – This bill is now dead.
- LD 1238, An Act to Require Reporting on the Percentage of Approved Care Being Delivered to Individuals – This bill is now dead.
- LD 659, An Act to Promote Seamless and Flexible Home and Community Supports Across the Lifespan for Individuals with Intellectual and Developmental Disabilities or Autism. This bill was reported out of Committee Ought to Pass as Amended.
- LD 464, An Act to Eliminate Waiting Lists for Community-based Services for People with Autism Spectrum Disorder, Intellectual Disability, Brain Injury or Other Related Conditions – This bill is now dead.
- LD 473, Resolve, to Expand the Eligibility for and Increase the Number of Applied Behavioral Analysis Services Authorized by the MaineCare Program – This bill was reported out of Committee Ought to Pass as Amended.
- LD 346, An Act to Clarify the Requirements for Family Caregivers – A Public Hearing was held on 3/29 in front of the Health and Human Services Committee. This bill was reported out of Committee Ought to Pass as Amended.
- LD 874, An Act to Address the Shortage of Direct Care Workers for Children with Disabilities in Maine – The Committee issued a Divided Report.
- LD 744, Resolve, to Direct the Department of Health and Human Services to Perform Rate Studies and Rate Determinations for Providers of Certain Services for Adults with Intellectual Disabilities or Autism Spectrum Disorder – This bill was tabled at the 4/27 Work Session.
- LD 825, An Act Relating to Transportation Services for MaineCare Members with Multiple Disabilities – This bill was tabled at the 4/26 Work Session.
- LD 1106, An Act to Improve the Transition to Adult Services for Children with Intellectual Disabilities – This bill was reported out of Committee Ought to Pass as Amended.
- LD 1041, An Act to Ensure Dental Insurance Coverage for Certain Adults with Disabilities – This bill is now dead.
- LD 1037, An Act to Fund Competitive Wages for Direct Support Professionals for Persons with Disabilities – This bill is now dead.
- LD 1003, An Act to Increase Access to Behavioral Health Services for Children and Individuals with Intellectual Disabilities or Autism – This bill was reported out of Committee Ought to Pass as Amended.
- LD 1339, Resolve, to Establish the Task Force to Study Forming the Maine Commission on Disabilities – This bill is scheduled for a Public Hearing on 5/11 at 1pm in front of the Health Coverage, Insurance and Financial Services Committee.
- LD 393, Resolve, Regarding Legislative Review of Portions of Chapter 33: Rules Governing Physical Restraint and Seclusion, a Major Substantive Rule of the Department of Education – This bill was reported out of Committee Ought to Pass as Amended.
- LD 948, An Act to Create a Liaison Position Between the Department of Education and the Department of Health and Human Services on Early Childhood Education Matters – The Committee issued a Divided Report.
- LD 1309, An Act to Clarify Requirements for Payment of Tuition for Children with Disabilities by the Department of Education's Child Development Services System – This bill was reported out of Committee Ought to Pass as Amended.
- LD 1528, Resolve, to Establish a Pilot Program and Convene a Work Group Regarding the Provision of Services by the Child Development Services System – This bill had a Public Hearing on 5/1 in front of the Education and Cultural Affairs Committee.
- LD 1466, An Act to Fund Adult Intellectual Disability and Autism Spectrum Disorder Services by Eliminating Certain Tax Funding from the Maine Clean Election Fund – The Committee issued a Divided Report.
- LD 1521, An Act to Support the Essential Support Workforce by Promoting Enhanced Reimbursement and Benefits and Encouraging Information Sharing – This bill had a Public Hearing on 4/20 in front of the HHS Committee.
There are a lot of very helpful links in the Google Doc, including the Legislature’s webpage and the Testimony Submission webpage. Please feel free to add things to the Google Doc. or reach out to Laura with any questions!
Cullen: This is obviously a very busy Legislative Session. We will continue to keep this group apprised as bills continue to make their way through the Legislature, so please be on the lookout for action alerts. We will continue to be called upon over the next couple of months for our expertise so please raise your voice when the opportunity arises. I would encourage everyone in this group to keep raising their voices and telling their stories as it is that exact type of advocacy is very powerful and truly helps Legislators make good decisions for the system of care for people with ID/DD in Maine.
The next meeting will be on Monday, June 12, 2023, 12-2pm, via Zoom*.
Featured Speakers: Shea Bouchard, Accessible Housing Advisor, WheelPad. Topic: An overview of WheelPad and how it is expanding options for accessibility in housing for people with disabilities. And Bonnie Jean Brooks, Interim Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: 2023 MDSOAB Annual Forum (part 2 of 2).
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2023 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].