June 12, 2023
Minutes
Minutes
Attendees via Zoom: Alina Smith, Amanda Parker, Bonnie-Jean Brooks, Bryan Gordon, Carol Snyder, David Cowing, Derek Fales, Elizabeth Gowell, J Richardson Collins, Jamie Whitehouse, Jennifer Frey, Julianne Zaharis, Lane Simsarian, Liz Hansen, Lorraine DeFreitas, Margaret Cardoza, Mark Kemmerle, Michaela York, Olivia Rowe, Robin Levesque, Rory Robb, Scott McKeough, Shaelyn Bouchard, Shane Ashe, Shelly King, Staci Converse, Teresa Barrows, Titus O’Rourke, Todd Goodwin, Independence Association, 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: Shea Bouchard, Accessible Housing Advisor, WheelPad. www.wheelpad.com Topic: An overview of WheelPad and how it is expanding options for accessibility in housing for people with disabilities.
Cullen: I am pleased to welcome Shea Bouchard, Accessible Housing Advisor with WheelPad who will be presenting an overview of WheelPad and how it is expanding options for accessibility in housing for people with disabilities. Thank you for being with us today, Shea!
Shea Bouchard: Thank you for having me, we’re always excited to share WheelPad’s mission!
Begin presentation (Click here for the presentation):
Shea: WheelPad’s units can be standalone, or they can be connected to an existing home. (Shea reviewed the different floorplans and visuals of the interiors, all of which is included in the presentation.) Maine has the Maine AELP Loan program which provides flexible loan terms and low interest rates for borrowers which would assist people in financing not only a WheelPad unit but other accessible home modifications as well.
Discussion:
-It was asked if they have any additional standalone options.
Shae: We are designing what we’re calling Cottage Pad, which would be wider and longer to have more living space in the pad. We’re hoping to have those designs done by the end of the year.
-It was stated that it might be advantageous to connect with the tiny home community in Maine as this would appear to dovetail nicely with that.
Shae: We are considering a unit that would just be an accessible bathroom. Is that something that would fill a need in the community? I’m seeing a lot of head nods so that’s helpful. We’re soliciting feedback to decide on our next big project, so I appreciate that feedback. The designs are 6.5 feet wide and approximately 24 feet long for the smaller of the two current designs.
Cullen: I’m wondering how you winterize the bathrooms, specifically for cold winter temperatures?
Shae: They were designed in Vermont to withstand the Vermont winters. I have a spec sheet that has all of the ratings that can be shared. You can feel good knowing we’ve had several of these that have withstood the cold Vermont winters.
Cullen: Thank you Shea for giving us so much information, this looks like a very innovative option for many families; 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 2 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 held a 1-hour Forum at the May 16th meeting as well as today’s meeting 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. We will be putting together a Survey Monkey as well to solicit feedback. 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.
– Part 2 Feedback: LD 2003 being signed into law last year allows for accessory dwelling units to be added to almost any property without a lot of hurdles to jump over which will be a game changer for housing options for people in communities across the state. The flexibility in the K Waiver, specifically staffing flexibility, has been a huge benefit to many organizations that have challenges recruiting and retaining staff. This flexibility has been critical for provider organizations to maintain financial stability. The rate for shared living providers has gone up as the number of group homes has gone down.
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.
– Part 2 Feedback: Transportation remains a major issue for people that has been under-addressed for years. Lack of transportation and difficulty with scheduling transportation affects community support programs and work support programs. Transportation options may not accommodate people’s specific disability, such as if someone is in a wheelchair. The broker system is not working and it’s not safe; the individual needs to know who the driver is without going through the broker. The individual needs to be more empowered to have a real say in who their driver is.
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 (DSPs)? – Part 2 Feedback: A police department in a town in Maine made a lot of changes such as flexible hours etc. to recruit new police officers. Providers/MACSP could look to recruitment efforts in other sectors to see what could be applied to the ID/DD provider sector. Having Laura present to the Coalition on MACSP’s recruitment/retention efforts and suggestions for the Department would be advantageous. There has been information circulating regarding doing away with the vaccination mandate. This has worsened workforce recruitment efforts; providers are turning away willing and able potential staff due to lack of vaccination. Lifting this requirement at this point in time seems to make sense and would greatly help with the workforce crisis.
6. Do you have other comments or recommendations? – Part 2 Feedback: There is a distinct lack of dental services, especially appropriate dental services. Too many people are on behavior plans due to pain associated with dental issues. People are also waiting to have dental work done which is exacerbating pain and making the entire situation worse. More sedation dentistry is a huge need. There should be more discussion of caps/crowns vs just pulling teeth. Contracts with local surgeons for sedation dentistry would be advantageous. Respite services are nonexistent in many areas of the state, especially for adults and higher needs adults. Who is in charge of respite services for adults? (Derek Fales did not know, but this information will be brought back to the group). The increase in shared living is a big plus; many family members are becoming shared living providers which is increasing housing options. However, we’re living in the age of an aging demographic and the question in my mind for my own son and for shared living providers is what happens when family members age and have health issues of their own and can no longer provide the care that their family members require?
-It was asked what accomplishments the MDSOAB has made over the past year based on last year’s forum.
Bonnie: Not as much as we’re hoping to achieve in the next year or two! We are hoping that there will be vast changes coming up based on review committee participation. OADS has included an MDSOAB representative on some of the stakeholder groups that will be addressing important aspects of the system, such as the Lifespan Workgroup and the Behavior Plan Workgroup. We’re also working on data collection efforts between OADS and the MDSOAB. We’re excited that OADs is providing quarterly data reports and responding to our requests for more information so we can make recommendations. I also met with someone this month who is developing a format for regional representatives to develop data around how many support plans there are, how many behavioral plans there are, how many have been rejected and why, etc. so we can have a better idea of what’s going on in the state.
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. For the purposes of this year’s MDSOAB report comments can be submitted through 6/30, but even after that please still send comments/feedback to me!
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]) or respond to the forthcoming Survey Monkey. 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
Derek Fales: We continue to partner with the National Disability Institute and providers who have applied for Innovation Grants to see how they’re going and look forward to looking at those outcomes and how they can inform the future of the system.
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’ve put together webinars to highlight the proposals we received for the Innovation Pilots:
We continue working on our Lifespan Project. 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)
Work continues on implementing the Supports Intensity Scale (SIS) in Maine, and we recently had listening sessions/webinars on that in which we gathered feedback.
Cullen: Thank you for this update and for being here today, Derek!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Alina Smith: Our work on the Transition Project is still underway. We look forward to providing a more in-depth update at a future meeting.
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 have 60 schools registered so far for the Read to Ride Summer Reading Challenge, which is fantastic. The Higher Literacy Faculty group had its first meeting last week with the Maine Association for Improving Literacy (MAIL), a network, open to all educators and those interested in improving literacy education efforts to benefit students, developed to strengthen statewide literacy practices, offering input to develop literacy supports for Maine educators to implement high quality literacy studies for all Maine students. We also had 18 ASUs (Administrative School Units) that have submitted applications for new dyslexia screeners and were awarded money. The Math4ME cohort for the 2023-2024 school year has been selected. As this group knows, we applied for and received a $750,000 grant for Regional Transition Interagency Collaborations to create a seamless system of support by region to develop regional transition councils. 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:
Staci Converse: The DD Council (Maine Developmental Disabilities Council) and SUFU (Speaking Up for Us) have partnered with Mad Hatter for the Health Relationships and Sexual Health for All Abilities Curriculum Training on 6/22. Professionals and self-advocates are invited to attend this full day curriculum training. This 10-lesson curriculum about healthy relationships and sexual health was designed for people with intellectual and developmental disabilities. The lessons were created to be co-led by a Professional and a Self-Advocate Peer Educator. There is also a Mindfulness and Healthy Relationships Full Day Retreat on 6/23. This full day retreat is for self-advocates and support staff to gain skills on healthy relationships with themselves, others, and the community. The day will include workshops on different health and relationship topics, as well as incorporate mindful movement, community building, and other mindfulness activities. (Click here for more information including how to register.) We would love to see people come to Disability Pride on 7/21 from 11am to 3pm in Mill Park in Augusta. We are really refocusing on outreach on our DD team. Staff are out meeting people, hearing from them, and sharing information about our services.
Lane Simsarian: As this group knows, DRM, with funding from the Maine Health Access Foundation, has been conducting a research project to identify the barriers to accessing health care that Maine people with disabilities experience every day. Our goal is to improve the health care system by collecting data and stories directly from people with disabilities. I’m going to invite our Healthy Equity Coordinator to a future meeting to go over some of those findings.
Cullen: Thank you both!
LD 924 Task Force Update: No Update.
Federal & Housing Updates:
Cullen:
State Legislature Update
Laura Cordes – Maine Association for Community Service Providers (MACSP) could not attend today’s meeting but sent the following update via email:
On a separate note, 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, is a bill that will provide equitable funding for special purpose preschool programs in Maine and allow more 3-5 year olds with disabilities to access federally required education throughout our state. The bill passed out of the Education Committee with unanimous bipartisan support. We expect that the full Legislature will be voting on LD 1309 this week.
Action Alert from Laura Cordes:
Take Action: Include Equitable Funding for Preschool Programs for Children with Disabilities in the Budget!
Please use this link to send a message to your State Representative and Senator to ask them to pass and fund LD 1309 in the budget. When you enter your address, the form will automatically go to your specific legislators. You can personalize the proposed message in the link. You can also share this action alert with your network through email with this link https://www.votervoice.net/MEACSP/Campaigns/105770/Respond
Bill Tracking Updates: 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. I want to thank everyone in this group for raising their voices and telling their stories; I would encourage everyone in this group to keep doing so 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.
Other Business:
The next meeting will be on Monday, July 10, 2023, 12-2pm, via Zoom*.
Featured Speakers: Featured Speaker: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (MDDC). Topic: Overview of the new history of website: Shadows of Pineland. And Helen Hemminger, Research and KIDS COUNT Associate, Maine Children’s Alliance. Topic: 2023 Maine KIDS COUNT Data Book.
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: Shea Bouchard, Accessible Housing Advisor, WheelPad. www.wheelpad.com Topic: An overview of WheelPad and how it is expanding options for accessibility in housing for people with disabilities.
Cullen: I am pleased to welcome Shea Bouchard, Accessible Housing Advisor with WheelPad who will be presenting an overview of WheelPad and how it is expanding options for accessibility in housing for people with disabilities. Thank you for being with us today, Shea!
Shea Bouchard: Thank you for having me, we’re always excited to share WheelPad’s mission!
Begin presentation (Click here for the presentation):
Shea: WheelPad’s units can be standalone, or they can be connected to an existing home. (Shea reviewed the different floorplans and visuals of the interiors, all of which is included in the presentation.) Maine has the Maine AELP Loan program which provides flexible loan terms and low interest rates for borrowers which would assist people in financing not only a WheelPad unit but other accessible home modifications as well.
Discussion:
-It was asked if they have any additional standalone options.
Shae: We are designing what we’re calling Cottage Pad, which would be wider and longer to have more living space in the pad. We’re hoping to have those designs done by the end of the year.
-It was stated that it might be advantageous to connect with the tiny home community in Maine as this would appear to dovetail nicely with that.
Shae: We are considering a unit that would just be an accessible bathroom. Is that something that would fill a need in the community? I’m seeing a lot of head nods so that’s helpful. We’re soliciting feedback to decide on our next big project, so I appreciate that feedback. The designs are 6.5 feet wide and approximately 24 feet long for the smaller of the two current designs.
Cullen: I’m wondering how you winterize the bathrooms, specifically for cold winter temperatures?
Shae: They were designed in Vermont to withstand the Vermont winters. I have a spec sheet that has all of the ratings that can be shared. You can feel good knowing we’ve had several of these that have withstood the cold Vermont winters.
Cullen: Thank you Shea for giving us so much information, this looks like a very innovative option for many families; 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 2 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 held a 1-hour Forum at the May 16th meeting as well as today’s meeting 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. We will be putting together a Survey Monkey as well to solicit feedback. 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.
– Part 2 Feedback: LD 2003 being signed into law last year allows for accessory dwelling units to be added to almost any property without a lot of hurdles to jump over which will be a game changer for housing options for people in communities across the state. The flexibility in the K Waiver, specifically staffing flexibility, has been a huge benefit to many organizations that have challenges recruiting and retaining staff. This flexibility has been critical for provider organizations to maintain financial stability. The rate for shared living providers has gone up as the number of group homes has gone down.
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.
– Part 2 Feedback: Transportation remains a major issue for people that has been under-addressed for years. Lack of transportation and difficulty with scheduling transportation affects community support programs and work support programs. Transportation options may not accommodate people’s specific disability, such as if someone is in a wheelchair. The broker system is not working and it’s not safe; the individual needs to know who the driver is without going through the broker. The individual needs to be more empowered to have a real say in who their driver is.
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 – Part 2 Feedback: Transportation remains a major issue for people that has been under-addressed for years. Lack of transportation and difficulty with scheduling transportation affects community support programs and work support programs. Transportation options may not accommodate people’s specific disability, such as if someone is in a wheelchair. The broker system is not working and it’s not safe; the individual needs to know who the driver is without going through the broker. The individual needs to be more empowered to have a real say in who their driver is.
- 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 – Part 2 Feedback: 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 (DSPs)? – Part 2 Feedback: A police department in a town in Maine made a lot of changes such as flexible hours etc. to recruit new police officers. Providers/MACSP could look to recruitment efforts in other sectors to see what could be applied to the ID/DD provider sector. Having Laura present to the Coalition on MACSP’s recruitment/retention efforts and suggestions for the Department would be advantageous. There has been information circulating regarding doing away with the vaccination mandate. This has worsened workforce recruitment efforts; providers are turning away willing and able potential staff due to lack of vaccination. Lifting this requirement at this point in time seems to make sense and would greatly help with the workforce crisis.
6. Do you have other comments or recommendations? – Part 2 Feedback: There is a distinct lack of dental services, especially appropriate dental services. Too many people are on behavior plans due to pain associated with dental issues. People are also waiting to have dental work done which is exacerbating pain and making the entire situation worse. More sedation dentistry is a huge need. There should be more discussion of caps/crowns vs just pulling teeth. Contracts with local surgeons for sedation dentistry would be advantageous. Respite services are nonexistent in many areas of the state, especially for adults and higher needs adults. Who is in charge of respite services for adults? (Derek Fales did not know, but this information will be brought back to the group). The increase in shared living is a big plus; many family members are becoming shared living providers which is increasing housing options. However, we’re living in the age of an aging demographic and the question in my mind for my own son and for shared living providers is what happens when family members age and have health issues of their own and can no longer provide the care that their family members require?
-It was asked what accomplishments the MDSOAB has made over the past year based on last year’s forum.
Bonnie: Not as much as we’re hoping to achieve in the next year or two! We are hoping that there will be vast changes coming up based on review committee participation. OADS has included an MDSOAB representative on some of the stakeholder groups that will be addressing important aspects of the system, such as the Lifespan Workgroup and the Behavior Plan Workgroup. We’re also working on data collection efforts between OADS and the MDSOAB. We’re excited that OADs is providing quarterly data reports and responding to our requests for more information so we can make recommendations. I also met with someone this month who is developing a format for regional representatives to develop data around how many support plans there are, how many behavioral plans there are, how many have been rejected and why, etc. so we can have a better idea of what’s going on in the state.
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. For the purposes of this year’s MDSOAB report comments can be submitted through 6/30, but even after that please still send comments/feedback to me!
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]) or respond to the forthcoming Survey Monkey. 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
Derek Fales: We continue to partner with the National Disability Institute and providers who have applied for Innovation Grants to see how they’re going and look forward to looking at those outcomes and how they can inform the future of the system.
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’ve put together webinars to highlight the proposals we received for the Innovation Pilots:
- DHHS OADS HCBS Innovation Grant Webinars – Summer 2023: Please join the Office of Aging and Disability Services (OADS) as we offer three webinars during the summer of 2023. The webinars will explain the 19 projects awarded to 14 provider awardees. The sessions are organized in three groupings by type of project – Technology, Employment and Training and Community Inclusion. We invite you to attend these sessions to learn about the innovative projects that have begun in Maine and will continue through December 2024. The links below will allow you to register for the events and to receive a link to the Webinar. All sessions are from 3PM to 4:30PM
June 27 – Technology: https://mainestate.zoom.us/webinar/register/WN_WBgQH5nxS4-JfiRkVZW4Zg
July 18 – Employment and Training: https://mainestate.zoom.us/webinar/register/WN_PQB9wKBhR76JVzocIyOuKw
August 14 – Community Inclusion: https://mainestate.zoom.us/webinar/register/WN_faTPJB9jQG6J2ntfbgjegA
If you need an accommodation, such as real time transcription and captioning (CART) or American Sign Language (ASL) or other language interpretation, please contact Miranda Whalen at [email protected].
We continue working on our Lifespan Project. 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)
Work continues on implementing the Supports Intensity Scale (SIS) in Maine, and we recently had listening sessions/webinars on that in which we gathered feedback.
- Person-Centered Planning Training Series: Please join the Department of Health and Human Services’ Office of Aging and Disability Services (OADS) for a four (4) part series of the Person-Centered Planning (PCP) Process. This training series will thoroughly examine the core principles and values of Person-Centered Planning and equip participants with tools and skills to use with the people they support. The PCP process emphasizes the importance of empowering the person to control their plan. (Click here for more information, including links to register for the training series.)
Cullen: Thank you for this update and for being here today, Derek!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Alina Smith: Our work on the Transition Project is still underway. We look forward to providing a more in-depth update at a future meeting.
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 have 60 schools registered so far for the Read to Ride Summer Reading Challenge, which is fantastic. The Higher Literacy Faculty group had its first meeting last week with the Maine Association for Improving Literacy (MAIL), a network, open to all educators and those interested in improving literacy education efforts to benefit students, developed to strengthen statewide literacy practices, offering input to develop literacy supports for Maine educators to implement high quality literacy studies for all Maine students. We also had 18 ASUs (Administrative School Units) that have submitted applications for new dyslexia screeners and were awarded money. The Math4ME cohort for the 2023-2024 school year has been selected. As this group knows, we applied for and received a $750,000 grant for Regional Transition Interagency Collaborations to create a seamless system of support by region to develop regional transition councils. 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:
Staci Converse: The DD Council (Maine Developmental Disabilities Council) and SUFU (Speaking Up for Us) have partnered with Mad Hatter for the Health Relationships and Sexual Health for All Abilities Curriculum Training on 6/22. Professionals and self-advocates are invited to attend this full day curriculum training. This 10-lesson curriculum about healthy relationships and sexual health was designed for people with intellectual and developmental disabilities. The lessons were created to be co-led by a Professional and a Self-Advocate Peer Educator. There is also a Mindfulness and Healthy Relationships Full Day Retreat on 6/23. This full day retreat is for self-advocates and support staff to gain skills on healthy relationships with themselves, others, and the community. The day will include workshops on different health and relationship topics, as well as incorporate mindful movement, community building, and other mindfulness activities. (Click here for more information including how to register.) We would love to see people come to Disability Pride on 7/21 from 11am to 3pm in Mill Park in Augusta. We are really refocusing on outreach on our DD team. Staff are out meeting people, hearing from them, and sharing information about our services.
Lane Simsarian: As this group knows, DRM, with funding from the Maine Health Access Foundation, has been conducting a research project to identify the barriers to accessing health care that Maine people with disabilities experience every day. Our goal is to improve the health care system by collecting data and stories directly from people with disabilities. I’m going to invite our Healthy Equity Coordinator to a future meeting to go over some of those findings.
Cullen: Thank you both!
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: Congress passed, and President Joe Biden signed into law the “Fiscal Responsibility Act,” an agreement to lift the federal debt ceiling until 2025 in exchange for capping federal spending programs at FY 23 levels in FY 24 and allowing an only 1% increase in spending in FY25. The bill also rescinds unspent COVID-19 relief funds, imposes more work requirements on Supplemental Nutrition Assistance Program (SNAP) and Temporary Assistance for Needy Families (TANF) recipients, and reallocates funding previously provided to help the IRS audit higher-income households for other purposes. Because some HUD programs require additional funding annually, the debt ceiling agreement acts as a cut to affordable housing and homelessness assistance. In FY 24 alone, HUD needs an estimated $13 billion to $16 billion in additional funding just to maintain current levels of assistance.
- S 570, 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 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. The bill would:
- Increase the number of credits available to states by 50 percent for the next two years and make the temporary 12.5 percent increase secured in 2018 permanent—which has already helped build more than 59,000 additional affordable housing units nationwide.
- Stabilize financing for workforce housing projects built using private activity bonds by decreasing the amount of private activity bonds needed to secure Housing Credit funding. As a result, projects would have to carry less debt, and more projects would be eligible to receive funding.
State Legislature Update
Laura Cordes – Maine Association for Community Service Providers (MACSP) could not attend today’s meeting but sent the following update via email:
- The session may end next Wednesday (6/21) as previously scheduled or there are now rumors that it may run into the last week of the month.
- Negotiations continue among AFA members, both parties and the Administration to finalize the Change Package - budget for FY24/FY25.
- Committees have wrapped up but with so many bills, amendments and fiscal notes are still being developed and the House and Senate have many bills to move.
- While many bills will pass both chambers, the overwhelming majority of those with fiscal notes will be left "on the table" in the appropriations committee and will not be included in the final budget.
On a separate note, 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, is a bill that will provide equitable funding for special purpose preschool programs in Maine and allow more 3-5 year olds with disabilities to access federally required education throughout our state. The bill passed out of the Education Committee with unanimous bipartisan support. We expect that the full Legislature will be voting on LD 1309 this week.
Action Alert from Laura Cordes:
Take Action: Include Equitable Funding for Preschool Programs for Children with Disabilities in the Budget!
Please use this link to send a message to your State Representative and Senator to ask them to pass and fund LD 1309 in the budget. When you enter your address, the form will automatically go to your specific legislators. You can personalize the proposed message in the link. You can also share this action alert with your network through email with this link https://www.votervoice.net/MEACSP/Campaigns/105770/Respond
Bill Tracking Updates: 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 – This bill is now Public law.
- 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 This bill is now 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 is now Public law.
- 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 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 5/18 Work Session and a Carry Over was requested.
- LD 825, An Act Relating to Transportation Services for MaineCare Members with Multiple Disabilities – This bill was tabled at the 5/24 Work Session and a Carry Over was requested.
- 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 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 now dead.
- 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 Passed to be Engrossed as Amended in both Chambers on 6/8. The bill now faces votes for enactment.
- 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 – ONTP/OTP-AM.
- 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 was reported out of Committee Ought to Pass as Amended.
- 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 is now dead.
- LD 1964, An Act to Implement the Recommendations of the Commission to Develop a Paid Family and Medical Leave Benefits Program – The Committee issued a Divided Report.
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. I want to thank everyone in this group for raising their voices and telling their stories; I would encourage everyone in this group to keep doing so 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.
Other Business:
- It was asked that Samantha Hogan’s article published in the Maine Monitor, Calls to overhaul Maine probate courts have stalled for half a century. The most vulnerable people may be at risk, be shared with the group.
The next meeting will be on Monday, July 10, 2023, 12-2pm, via Zoom*.
Featured Speakers: Featured Speaker: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (MDDC). Topic: Overview of the new history of website: Shadows of Pineland. And Helen Hemminger, Research and KIDS COUNT Associate, Maine Children’s Alliance. Topic: 2023 Maine KIDS COUNT Data Book.
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].