May 13, 2024
Minutes
Minutes
Attendees via Zoom: Amanda Parker, Annmarie Mayberry, Carol Snyder, Cherie Cormier, Christina Millette, Craig Patterson, Darla Chafin, David Cowing, Debbie Dionne, Grayson Lookner, Hanna Daigle, Heidi Mansir, J Richardson Collins, Jennifer Frey, Jennifer McCann, Julianne Zaharis, Keri Lopes, Laura Cordes, Laurie Coldwell, Libby Stone-Sterling, Lisa Ravar, Lucas Cuellar, Maine CITE, Margaret Cardoza, Michaela York, Monique Stairs, Quinn Gormley, Rachel Dyer, RJ Adler, Rob, Robin Levesque, Sammie-Ellie MacKinnon, Shelley Zielinski, Vickey Merrill, Cullen Ryan, a few people who didn’t identify themselves and/or left prior to the conclusion of the meeting.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Sammy-Ellie MacKinnon, Thrive Together Project Director, Disability Rights Maine. www.drme.org Topic: ThriveTogether Maine is the name of a collaboration between DRM, SUFU, MACSP, & MECASA. DRM received a "Disability Grant" from the Department of Justice, Office on Violence Against Women, which is designed to support agencies to improve their systems to help survivors of sexual violence with disabilities. In order to make system improvements, there is a need to look at what the current system looks like through a needs assessment. Join members of the ThriveTogether Collaboration to learn about how to be a part of the assessment process.
Cullen: Today I’m pleased to welcome Sammy-Ellie MacKinnon, Thrive Together Project Director with Disability Rights Maine who will be presenting on Thrive Together Maine Collaboration, including how people can be part of a systems improvement needs assessment. This is a very important discussion. We’ve been discussing the history of the system of care for people with intellectual/developmental disabilities in Maine for quite some time, including how the original concept of institutionalization in the 1800’s had the noble intent of protecting people who were vulnerable from the rest of us. We know that proper investment did not follow, making institutions ultimately a disaster, but the concept of keeping people safe still rings true. Today’s presentation is going to put front and center that people can be vulnerable, and that our system of care has to ensure that people are not taken advantage of, preyed upon, victimized, violated, and/or traumatized. Thank you for being here for this important discussion!
Sammy-Ellie MacKinnon: Thank you for having me! I am the Director of ThriveTogether Maine. ThriveTogether Maine is the name of a collaboration between DRM, Speaking Up for Us (SUFU), Maine Association for Community Service Providers (MACSP), and Maine Coalition Against Sexual Assault (MECASA). We received a "Disability Grant" from the Department of Justice, Office on Violence Against Women, which is designed to support agencies to improve their systems to help survivors of sexual violence with disabilities. In order to make system improvements, we need to look at what the current system looks like through a needs assessment.
Begin Presentation (Click here for the presentation):
Sammie-Ellie: ThriveTogether wants to know what intersecting needs are for survivors of sexual violence and people with DD in the state of Maine. In order to find this out we will be talking to survivors of sexual violence, survivors of sexual violence with DD, people with DD, people who support people with DD, and staff and leaders of our member agencies. This is exactly why we were thrilled to be invited to present here today. We’ll be looking to accomplish this through small focus groups, individual interviews, and online surveys. The topic is difficult so we wanted to have a variety of ways in which people could participate based on comfort level. We have a lot of documents to send people if they want more information. If folks are interested, please feel free to reach out to me [email protected] or via phone 207-626-2774 ext. 260. We also have flyers that could be posted as well (click here for the ThriveTogether focus groups flyer; click here for the ThriveTogether Info Sheet flyer). Thank you so much for your time!
Cullen: Thank you for this, Sammie-Ellie, this is such an important topic, and thank you to everyone involved in this collaboration.
Discussion:
Craig Patterson: I’m wondering if the DD Council was involved. I know the DD Council did some significant work around this a year or so ago.
Sammie-Ellie: Thank you, that’s very helpful. I’m working on reaching out to other agencies, so I’d be more than happy to connect with the DD Council.
Lisa Ravar – MECASA: We were fortunate to be able to work with the DD Council on the Community of Practice they put out last year.
Craig: This is a needed service, and I’m hoping that this group will be able to get us to a place that’s much better than where we are currently.
-A self-advocate stated that this collaboration is fantastic. She stated that providers and self-advocates are involved, but it might be advantageous to include parents, siblings, and other family members in this discussion. She stated that when connecting to other self-advocates who have been victimized one of their barriers was parents. Family members want to protect their loved ones, and when they discover something has happened to their loved ones there is incredible pain. She added that outreach to therapists would be helpful, specifically therapists who have experience working with people with ID/DD who are survivors of sexual violence.
Cullen: Sexual trauma is something that people retreat from, and a large component is shame and secrecy, so people trend towards not speaking about these things. There’s a good reason for that. Having parents there to offer perspectives would be very valuable, as would therapists who think about how trauma unfolds and how people heal from it. This is not an easy topic. I want to thank everyone involved in this collaboration for having this at the forefront.
Craig: We often hear from therapists that they’re not skilled at working with the population we serve on these topics. If we could develop a way to educate therapists on how to do this work with this population, it would be very beneficial.
Jennifer McCann: I’m part of this collaboration and also a therapist. I think what everyone has already said is very important. Prevention is also something that we ought to mention in this group. The goal of the grant is not specifically prevention, but it’s something we need to think about and weave it into everything we do so people can speak with trusted people in their lives about it. I would welcome a chance to speak to any parents or provide training to other therapists etc.
Lucas Cuellar: My primary work at DRM is working with people with ID/DD. Something I run into is clients disclosing something in their history and the wraparound services/reaction be minimizing that or sometimes even disbelieving that experience. I have no doubt that this grant and then needs assessment will take that possibility into account, but I wonder if sometimes those blinders end up causing more harm.
Sammie-Ellie: For those who don’t know I have a Master’s of Social Worker and have experience in that world. Part of the needs assessment is asking for that kind of information. We want to hear what people have to say – no matter what that is. The report that is created after this process would detail those types of barriers, and really look at what it means to support people with ID/DD who are survivors of sexual assault. When we get to strategic planning there’s always the opportunity to apply for more funding to continue this work.
Monique Stairs – SUFU: Though prevention isn’t covered in this grant, we are very mindful of the importance of prevention. One of the projects that the DD Council has funded is bringing a curriculum to Maine around sex education. I will be working on organizing a statewide stakeholder meeting on this topic because I’ve learned that a lot of people with ID/DD were excused from that conversation when they were in school.
Lisa: We want people to know that sexual assault advocacy for people with ID/DD is one of the services offered at local sexual support response centers.
-It was stated that even for people who are more informed, there’s still a gap in understanding that someone’s behavior might be related to their trauma. The veil of invisibility can cause a resurgence and re-traumatization.
-It was asked if the bill in the Legislature pertaining to sexual assault kit tracking was enacted.
Quinn: The bill being referenced is the Safe Kit tracking bill. When people go to the hospital for a forensic exam following a sexual assault the kits are not always processed, etc. This provides a way to track where your kit is in the process via an app – which is a common practice in other states.
Rep. Grayson Lookner: My understanding is that that bill was not funded as it currently stands off the Special Appropriations Table, but that could have changed as it was a very long night!
Cullen: I wanted to take a moment to thank you, Representative Lookner, for being a champion in the Legislature to improve the lives of vulnerable populations in Maine.
-It was stated that LD 2129, An Act to Establish a Statewide Sexual Assault Forensic Examination Kit Tracking System and Conduct an Inventory of Existing Forensic Examination Kits in the Possession of Law Enforcement, passed both the House, was placed on the Special Appropriations Table, and then on 5/10 the Senate voted to take it from the Special Appropriations Table and passed to be enacted.
Cullen: Thank you for this informative presentation, Sammie-Ellie, for everyone else who contributed to this discussion, having the courage to do so, and for starting this dialogue. Thank you again!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Craig Patterson: Betsy couldn’t attend today’s meeting because she’s on the road with Dr. Mills but passed along information via email to be included in the minutes. We’re trying to share as much information about Lifespan as possible and welcome everyone’s feedback!
-Provider Readiness Surveys: We received the information back from our provider readiness surveys in advance of our plan to offer an opportunity for providers to apply for grants and technical assistance to be prepared to offer the new services in Lifespan. Our goal is to open up the process for application to these grants in the summer 2024.
-DHHS-OADS Informational Tour for the Proposed Lifespan Waiver: -Lisa Mills and Betsy are on their tour around the state to provide some updates about the Lifespan waiver and gather further input (see below for more information). In addition, we have updated the FAQ Lifespan-FAQ-5th-Edition.pdf (maine.gov) which outlines many of these updates.
Please join the Office of Aging and Disability Services (OADS) as we offer six (6) in-person presentations and discussions on the proposed Lifespan Waiver. These sessions are for youth and adults with intellectual/developmental disabilities, autism, or other related conditions, as well as their families, interested service providers, and any other interested parties, to learn more about updates to the proposed waiver. There will be an opportunity to share comments and ask questions.
We especially invite those with intellectual/developmental disabilities, autism, or other related conditions under 18 and/or on a waiting list and not yet receiving any waiver services. These groups will be among the first to access the Lifespan waiver.
We also encourage providers who may not yet be providing waiver services to individuals with intellectual/developmental disabilities, autism, or other related conditions to join us to learn more about the opportunity to become providers for the Lifespan Waiver.
We will begin each session with a brief high-level review of the Lifespan Waiver design and updates based on feedback from the input received after the July 2023 Concept Paper was released for comment.
Who should attend?
OADS is offering an in-person events across the state with Providers, Waiver Members, their Family Members, and other interested parties such as:
Providers will be asked to attend the provider-specific sessions to promote active interaction with content oriented toward their interests.
To ensure we have enough space for everyone who wants to attend, please complete the registration form below. If the meeting location changes, we will notify you through the email submitted on the form. Registration Form for In-Person Events: https://forms.office.com/g/b1ebjFgbSn
In-Person Events:
Maine Department of Health and Human Services Administrative Bldg.
109 Capitol Street
Augusta
Monday, May 13, 2024
9:00 AM - 10:30 AM: Providers
11:00 AM - 12:30 PM: Families and Members and interested parties
Conference Rooms Maine A and B – to the right as you enter the building
DHHS Lewiston District Office
200 Main Street
Lewiston
Tuesday, May 14, 2024
9:30 AM – 11:00 AM: Providers
11:30 AM – 1:00 PM: Families and Members and interested parties
Conference Rooms C and D
Brunswick Martin’s Point Health Center
114 Bath Rd
Brunswick
Tuesday, May 14, 2024
4:00 PM - 6:00 PM: Families and Members and interested parties
Martin's Point Community Room
DHHS Bangor District Office
19 Maine Avenue
Bangor
Wednesday, May 15, 2024
9:00 AM -10:30 AM: Providers
11:00 AM - 12:30 PM: Families and Members and interested parties
Room CR 2
DHHS Caribou District Office
30 Skyway Drive, Unit 100
Caribou
Thursday, May 16, 2024
8:30 AM - 10:00 AM: Providers
10:30 AM - 12:00 PM: Families and Members and interested parties
Conference Rooms A and B
DHHS Portland District Office
151 Jetport Boulevard
South Portland
Friday, May 17, 2024
8:30 AM – 10:00 AM: Providers
10:30 AM - 12:00 PM: Families and Members and interested parties
Rooms CR 139 A and B
If you need accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please get in touch with Miranda Whalen at [email protected] by Friday, May 3rd.
-DHHS-OADS Disability Services Reportable Events Training Sections 21 and 29: The Office of Aging and Disability Services (OADS) Reportable Events trainings for 2024 are now open for registration. The OADS Quality Assurance team is hosting this monthly Zoom training. Goals of the session include reporting requirements, best practices, and answers to questions. This training is for Providers and Case Managers of individuals receiving Section 21 and 29 services.
2024 Schedule of Dates:
After the event, attendees will receive a certificate of attendance. A copy of the PowerPoint presentation is available on the OADS website at: https://www.maine.gov/dhhs/oads/providers/adults-with-intellectual-disability-and-autism/reportable-events
Note: Each attendee must register and use their unique link to join the sessions to receive a certificate of attendance. Using another attendee’s unique login link will result in your attendance not being recorded.
Please register at this link:
https://mainestate.zoom.us/meeting/register/tZEpd-uvpjsvGtc6D_ntbMkkWyR7ceqBl1wH
If you require accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please contact Miranda Whalen by email [email protected] at least two weeks before the session you plan to attend.
Please contact [email protected] with any questions about Reportable Events training.
-Maine SIS-A info & Meet the Team
-A parent stated that she just returned from the first in-person Lifespan meeting, and she was very impressed. She stated there were about 26 people in attendance. Others commented similarly.
-It was asked how the Transition Liaison Project is going.
Craig: We’ve found it to be incredibly helpful. One issue we struggled with for a long time in our intake/eligibility process was involving the right people. We thought that if we could start the process earlier, and bring together the right internal staff, that it might make more sense. And I think it does. We’ll be bringing in people as young as 14 ½. We brought Transition Liaisons in who can assist people directly.
-It was asked if the capacity built into the pilot will meet the needs as youth are able to enroll in Lifespan.
Craig: The Transition Liaisons are doing a fantastic job currently. Through the pilot we identified 20 individuals who otherwise would have fallen through the cracks. The Community Resource Coordinators will also play a critical role in this process.
Cullen: Thank you for being here and providing all of this information, Craig, and thank you for the Department’s efforts to communicate all of the important information around Lifespan and solicit feedback!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/ocfs - No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling:
Cullen: Thank you, Libby!
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: We have a few projects going on that are really exciting. The Vaccine Hesitancy Project is still ongoing (click here for a related flyer). We also have the Youth Self-Advocacy Project, and they’re really doing some amazing things (click here for the Youth Self-Advocacy flyer)! We’re also working on training people to train others on self-advocacy during Person Centered Planning (PCP) meetings (click here for the PCP Train the Trainer flyer). We’re looking for people across the state who would be interested in becoming PCP self-advocacy trainers.
-There was discussion regarding a digital storytelling video that included a very rare side effect of the COVID-19 vaccine. The intent of the video is to demonstrate the importance of self-advocacy and the importance of being heard when people raise their voices.
Cullen: Thank you for being here, Lucas!
Federal & Housing Updates:
Cullen:
State Legislature Update –
Laura Cordes: The Legislature adjourned Friday 5/10, after the veto session. Bills (except for emergency bills) go into effect 90 days after adjournment. I’m happy to update the Google Doc and do a longer summary at the next meeting. But there was an unconventional moment this Session in the April when the Legislature was supposed to adjourn, they had run out of time to address bills on the Special Appropriations Table. Last Tuesday the Appropriations and Financial Affairs (AFA) Committee moved 80 bills off the Table. The Senate voted on them on Friday, but the House did not. There are a whole host of bills that didn’t get funded off the Table.
Rep. Lookner: It’s very confusing where bills stand now that were taken up by the Senate on 5/10, but not in the House. I was excited that the Supplemental Budget included $18 million for a rent relief program, as well as the funding included for affordable housing.
Cullen: I want to commend you again, Representative Lookner, for all of your work on the Housing Committee. It’s really important that people have access to affordable housing, and you were a fierce advocate for this in the 131st Legislature!
-The group echoed their appreciation for Representative Lookner as well as Laura.
Rep. Lookner: Thank you, and I’m hopeful that this will become a Standing Committee of the Legislature.
As this group knows, Laura Cordes created a Google doc for the Second Regular Session of the 131st Legislature to support the MCHQS' interest in monitoring and engaging in bills of interest. The doc contains an updated list of bills of interest.
For more information please refer to the Google Doc.
Governor’s Supplemental Budget - The Budget has been signed by the Governor.
This bill reorganizes oversight and updates practices for serving infants, toddlers, and children with disabilities from birth to 6 years of age. The bill:
Bills of Interest: To look up any bill click on this link and enter the bill number:
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted.
Featured Speaker: Sammy-Ellie MacKinnon, Thrive Together Project Director, Disability Rights Maine. www.drme.org Topic: ThriveTogether Maine is the name of a collaboration between DRM, SUFU, MACSP, & MECASA. DRM received a "Disability Grant" from the Department of Justice, Office on Violence Against Women, which is designed to support agencies to improve their systems to help survivors of sexual violence with disabilities. In order to make system improvements, there is a need to look at what the current system looks like through a needs assessment. Join members of the ThriveTogether Collaboration to learn about how to be a part of the assessment process.
Cullen: Today I’m pleased to welcome Sammy-Ellie MacKinnon, Thrive Together Project Director with Disability Rights Maine who will be presenting on Thrive Together Maine Collaboration, including how people can be part of a systems improvement needs assessment. This is a very important discussion. We’ve been discussing the history of the system of care for people with intellectual/developmental disabilities in Maine for quite some time, including how the original concept of institutionalization in the 1800’s had the noble intent of protecting people who were vulnerable from the rest of us. We know that proper investment did not follow, making institutions ultimately a disaster, but the concept of keeping people safe still rings true. Today’s presentation is going to put front and center that people can be vulnerable, and that our system of care has to ensure that people are not taken advantage of, preyed upon, victimized, violated, and/or traumatized. Thank you for being here for this important discussion!
Sammy-Ellie MacKinnon: Thank you for having me! I am the Director of ThriveTogether Maine. ThriveTogether Maine is the name of a collaboration between DRM, Speaking Up for Us (SUFU), Maine Association for Community Service Providers (MACSP), and Maine Coalition Against Sexual Assault (MECASA). We received a "Disability Grant" from the Department of Justice, Office on Violence Against Women, which is designed to support agencies to improve their systems to help survivors of sexual violence with disabilities. In order to make system improvements, we need to look at what the current system looks like through a needs assessment.
Begin Presentation (Click here for the presentation):
Sammie-Ellie: ThriveTogether wants to know what intersecting needs are for survivors of sexual violence and people with DD in the state of Maine. In order to find this out we will be talking to survivors of sexual violence, survivors of sexual violence with DD, people with DD, people who support people with DD, and staff and leaders of our member agencies. This is exactly why we were thrilled to be invited to present here today. We’ll be looking to accomplish this through small focus groups, individual interviews, and online surveys. The topic is difficult so we wanted to have a variety of ways in which people could participate based on comfort level. We have a lot of documents to send people if they want more information. If folks are interested, please feel free to reach out to me [email protected] or via phone 207-626-2774 ext. 260. We also have flyers that could be posted as well (click here for the ThriveTogether focus groups flyer; click here for the ThriveTogether Info Sheet flyer). Thank you so much for your time!
Cullen: Thank you for this, Sammie-Ellie, this is such an important topic, and thank you to everyone involved in this collaboration.
Discussion:
Craig Patterson: I’m wondering if the DD Council was involved. I know the DD Council did some significant work around this a year or so ago.
Sammie-Ellie: Thank you, that’s very helpful. I’m working on reaching out to other agencies, so I’d be more than happy to connect with the DD Council.
Lisa Ravar – MECASA: We were fortunate to be able to work with the DD Council on the Community of Practice they put out last year.
Craig: This is a needed service, and I’m hoping that this group will be able to get us to a place that’s much better than where we are currently.
-A self-advocate stated that this collaboration is fantastic. She stated that providers and self-advocates are involved, but it might be advantageous to include parents, siblings, and other family members in this discussion. She stated that when connecting to other self-advocates who have been victimized one of their barriers was parents. Family members want to protect their loved ones, and when they discover something has happened to their loved ones there is incredible pain. She added that outreach to therapists would be helpful, specifically therapists who have experience working with people with ID/DD who are survivors of sexual violence.
Cullen: Sexual trauma is something that people retreat from, and a large component is shame and secrecy, so people trend towards not speaking about these things. There’s a good reason for that. Having parents there to offer perspectives would be very valuable, as would therapists who think about how trauma unfolds and how people heal from it. This is not an easy topic. I want to thank everyone involved in this collaboration for having this at the forefront.
Craig: We often hear from therapists that they’re not skilled at working with the population we serve on these topics. If we could develop a way to educate therapists on how to do this work with this population, it would be very beneficial.
Jennifer McCann: I’m part of this collaboration and also a therapist. I think what everyone has already said is very important. Prevention is also something that we ought to mention in this group. The goal of the grant is not specifically prevention, but it’s something we need to think about and weave it into everything we do so people can speak with trusted people in their lives about it. I would welcome a chance to speak to any parents or provide training to other therapists etc.
Lucas Cuellar: My primary work at DRM is working with people with ID/DD. Something I run into is clients disclosing something in their history and the wraparound services/reaction be minimizing that or sometimes even disbelieving that experience. I have no doubt that this grant and then needs assessment will take that possibility into account, but I wonder if sometimes those blinders end up causing more harm.
Sammie-Ellie: For those who don’t know I have a Master’s of Social Worker and have experience in that world. Part of the needs assessment is asking for that kind of information. We want to hear what people have to say – no matter what that is. The report that is created after this process would detail those types of barriers, and really look at what it means to support people with ID/DD who are survivors of sexual assault. When we get to strategic planning there’s always the opportunity to apply for more funding to continue this work.
Monique Stairs – SUFU: Though prevention isn’t covered in this grant, we are very mindful of the importance of prevention. One of the projects that the DD Council has funded is bringing a curriculum to Maine around sex education. I will be working on organizing a statewide stakeholder meeting on this topic because I’ve learned that a lot of people with ID/DD were excused from that conversation when they were in school.
Lisa: We want people to know that sexual assault advocacy for people with ID/DD is one of the services offered at local sexual support response centers.
-It was stated that even for people who are more informed, there’s still a gap in understanding that someone’s behavior might be related to their trauma. The veil of invisibility can cause a resurgence and re-traumatization.
-It was asked if the bill in the Legislature pertaining to sexual assault kit tracking was enacted.
Quinn: The bill being referenced is the Safe Kit tracking bill. When people go to the hospital for a forensic exam following a sexual assault the kits are not always processed, etc. This provides a way to track where your kit is in the process via an app – which is a common practice in other states.
Rep. Grayson Lookner: My understanding is that that bill was not funded as it currently stands off the Special Appropriations Table, but that could have changed as it was a very long night!
Cullen: I wanted to take a moment to thank you, Representative Lookner, for being a champion in the Legislature to improve the lives of vulnerable populations in Maine.
-It was stated that LD 2129, An Act to Establish a Statewide Sexual Assault Forensic Examination Kit Tracking System and Conduct an Inventory of Existing Forensic Examination Kits in the Possession of Law Enforcement, passed both the House, was placed on the Special Appropriations Table, and then on 5/10 the Senate voted to take it from the Special Appropriations Table and passed to be enacted.
Cullen: Thank you for this informative presentation, Sammie-Ellie, for everyone else who contributed to this discussion, having the courage to do so, and for starting this dialogue. Thank you again!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Craig Patterson: Betsy couldn’t attend today’s meeting because she’s on the road with Dr. Mills but passed along information via email to be included in the minutes. We’re trying to share as much information about Lifespan as possible and welcome everyone’s feedback!
-Provider Readiness Surveys: We received the information back from our provider readiness surveys in advance of our plan to offer an opportunity for providers to apply for grants and technical assistance to be prepared to offer the new services in Lifespan. Our goal is to open up the process for application to these grants in the summer 2024.
- Over 60 total providers responded.
- Strong provider interest in each service
- At least 1 interested provider in every county in the state
- Many providers identified similar readiness needs:
- Staff competency-based training package to meet training requirements, write SIPs, learn acceptable documentation and associated grant.
- Supervisory plan and training/TA to prepare supervisor or staff delivering new service and associated grant.
- Billing procedures and fiscal staff training/TA on billing procedures and associated grant.
- Program Management grant for time on building service line operating budget based on staffing requirements, rates, and billing rules.
- Service delivery documentation.
-DHHS-OADS Informational Tour for the Proposed Lifespan Waiver: -Lisa Mills and Betsy are on their tour around the state to provide some updates about the Lifespan waiver and gather further input (see below for more information). In addition, we have updated the FAQ Lifespan-FAQ-5th-Edition.pdf (maine.gov) which outlines many of these updates.
Please join the Office of Aging and Disability Services (OADS) as we offer six (6) in-person presentations and discussions on the proposed Lifespan Waiver. These sessions are for youth and adults with intellectual/developmental disabilities, autism, or other related conditions, as well as their families, interested service providers, and any other interested parties, to learn more about updates to the proposed waiver. There will be an opportunity to share comments and ask questions.
We especially invite those with intellectual/developmental disabilities, autism, or other related conditions under 18 and/or on a waiting list and not yet receiving any waiver services. These groups will be among the first to access the Lifespan waiver.
We also encourage providers who may not yet be providing waiver services to individuals with intellectual/developmental disabilities, autism, or other related conditions to join us to learn more about the opportunity to become providers for the Lifespan Waiver.
We will begin each session with a brief high-level review of the Lifespan Waiver design and updates based on feedback from the input received after the July 2023 Concept Paper was released for comment.
Who should attend?
OADS is offering an in-person events across the state with Providers, Waiver Members, their Family Members, and other interested parties such as:
- Those on the waitlists for Sections 21 or 29
- Current waiver participants and self-advocates
- Families of youth and youth ages 14-21 who anticipate applying for adult MaineCare IDD/Autism services.
- Advocates and advocacy groups
- Legislators interested in the progress of Lifespan.
- General Public
Providers will be asked to attend the provider-specific sessions to promote active interaction with content oriented toward their interests.
To ensure we have enough space for everyone who wants to attend, please complete the registration form below. If the meeting location changes, we will notify you through the email submitted on the form. Registration Form for In-Person Events: https://forms.office.com/g/b1ebjFgbSn
In-Person Events:
Maine Department of Health and Human Services Administrative Bldg.
109 Capitol Street
Augusta
Monday, May 13, 2024
9:00 AM - 10:30 AM: Providers
11:00 AM - 12:30 PM: Families and Members and interested parties
Conference Rooms Maine A and B – to the right as you enter the building
DHHS Lewiston District Office
200 Main Street
Lewiston
Tuesday, May 14, 2024
9:30 AM – 11:00 AM: Providers
11:30 AM – 1:00 PM: Families and Members and interested parties
Conference Rooms C and D
Brunswick Martin’s Point Health Center
114 Bath Rd
Brunswick
Tuesday, May 14, 2024
4:00 PM - 6:00 PM: Families and Members and interested parties
Martin's Point Community Room
DHHS Bangor District Office
19 Maine Avenue
Bangor
Wednesday, May 15, 2024
9:00 AM -10:30 AM: Providers
11:00 AM - 12:30 PM: Families and Members and interested parties
Room CR 2
DHHS Caribou District Office
30 Skyway Drive, Unit 100
Caribou
Thursday, May 16, 2024
8:30 AM - 10:00 AM: Providers
10:30 AM - 12:00 PM: Families and Members and interested parties
Conference Rooms A and B
DHHS Portland District Office
151 Jetport Boulevard
South Portland
Friday, May 17, 2024
8:30 AM – 10:00 AM: Providers
10:30 AM - 12:00 PM: Families and Members and interested parties
Rooms CR 139 A and B
If you need accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please get in touch with Miranda Whalen at [email protected] by Friday, May 3rd.
-DHHS-OADS Disability Services Reportable Events Training Sections 21 and 29: The Office of Aging and Disability Services (OADS) Reportable Events trainings for 2024 are now open for registration. The OADS Quality Assurance team is hosting this monthly Zoom training. Goals of the session include reporting requirements, best practices, and answers to questions. This training is for Providers and Case Managers of individuals receiving Section 21 and 29 services.
2024 Schedule of Dates:
- Thursday, May 23rd: 9:00 AM to 10:30 AM
- Monday, June 17th: 1:00 PM to 2:30 PM
- Thursday, July 25th: 9:00 AM to 10:30 AM
- Monday, August 19th: 1:00 PM to 2:30 PM
- Thursday, September 26th: 9:00 AM to 10:30 AM
- Monday, October 21st: 1:00 PM to 2:30 PM
- Thursday, November 21st: 9:00 AM to 10:30 AM
- Monday, December 16th: 1:00 PM to 2:30 PM
After the event, attendees will receive a certificate of attendance. A copy of the PowerPoint presentation is available on the OADS website at: https://www.maine.gov/dhhs/oads/providers/adults-with-intellectual-disability-and-autism/reportable-events
Note: Each attendee must register and use their unique link to join the sessions to receive a certificate of attendance. Using another attendee’s unique login link will result in your attendance not being recorded.
Please register at this link:
https://mainestate.zoom.us/meeting/register/tZEpd-uvpjsvGtc6D_ntbMkkWyR7ceqBl1wH
If you require accommodation, such as real-time transcription and captioning (CART), American Sign Language (ASL), or other language interpretation, please contact Miranda Whalen by email [email protected] at least two weeks before the session you plan to attend.
Please contact [email protected] with any questions about Reportable Events training.
-Maine SIS-A info & Meet the Team
-A parent stated that she just returned from the first in-person Lifespan meeting, and she was very impressed. She stated there were about 26 people in attendance. Others commented similarly.
-It was asked how the Transition Liaison Project is going.
Craig: We’ve found it to be incredibly helpful. One issue we struggled with for a long time in our intake/eligibility process was involving the right people. We thought that if we could start the process earlier, and bring together the right internal staff, that it might make more sense. And I think it does. We’ll be bringing in people as young as 14 ½. We brought Transition Liaisons in who can assist people directly.
-It was asked if the capacity built into the pilot will meet the needs as youth are able to enroll in Lifespan.
Craig: The Transition Liaisons are doing a fantastic job currently. Through the pilot we identified 20 individuals who otherwise would have fallen through the cracks. The Community Resource Coordinators will also play a critical role in this process.
Cullen: Thank you for being here and providing all of this information, Craig, and thank you for the Department’s efforts to communicate all of the important information around Lifespan and solicit feedback!
DHHS – Children’s Behavioral Health Services (CBHS), Office of Behavioral Health (OBH) - www.maine.gov/dhhs/ocfs - No Update
DOL – Division of Vocational Rehabilitation (DVR) - www.maine.gov/rehab/dvr
Libby Stone-Sterling:
- New Targeted Positions - Thanks to additional state funding, the Division of Vocational Rehabilitation has been able to add four new Targeted Caseload – Rehabilitation Counselor IIs. These new VR Counselors will be based in Bangor, Augusta, Lewiston, and Portland and will exclusively serve individuals with I/DD. We are excited to be partnering on training of these new staff with OADS so that we can continue to strengthen how our agencies work together to assist individuals with I/DD to prepare for, find, maintain, and advance in employment. We also will put a focus on strengthening work with families as part of this new initiative. Two of the four positions have been filled (Portland, Lewiston) and we are completing hiring for Augusta and Bangor. We’re excited to see how this level of collaboration could benefit people in a positive way!
- Summer Activities: We have a number of summer activities that will be going on and it’s not too late to get folks connected with VR for the summer. We have college bus tours, employer bus tours, pathways bus tours, a lot happening around career apprenticeship, etc.
- PEERs Curriculum: We have the PEERS curriculum underway currently. We’re about halfway through the current session and another session will start after this concludes.
- Inclusive Post-Secondary Education – BRS is excited to be working on inclusive post-secondary education opportunities.
Cullen: Thank you, Libby!
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No Update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: We have a few projects going on that are really exciting. The Vaccine Hesitancy Project is still ongoing (click here for a related flyer). We also have the Youth Self-Advocacy Project, and they’re really doing some amazing things (click here for the Youth Self-Advocacy flyer)! We’re also working on training people to train others on self-advocacy during Person Centered Planning (PCP) meetings (click here for the PCP Train the Trainer flyer). We’re looking for people across the state who would be interested in becoming PCP self-advocacy trainers.
-There was discussion regarding a digital storytelling video that included a very rare side effect of the COVID-19 vaccine. The intent of the video is to demonstrate the importance of self-advocacy and the importance of being heard when people raise their voices.
Cullen: Thank you for being here, Lucas!
Federal & Housing Updates:
Cullen:
- Tax Package – The House passed its tax package, the Tax Relief for American Families and Workers Act of 2024 (H.R. 7024), at the end of January. The bill now faces a full vote in the Senate. The tax bill includes provisions to expand the Child Tax Credit (CTC), as well as top two top legislative priorities related to affordable housing (also included in the bipartisan Affordable Housing Credit Improvement Act that has widespread bipartisan support). The tax bill would do the following for affordable housing:
- Restore the 12.5% allocation increase for nine percent LIHTCs for 2023 to 2025 (about 25% more housing could be created); and
- Lower the 50% bond financing test to 30% for 2024 to 2025 (streamline the ability to create that housing).
- FY 25 Budget – Congress is in the midst of FY 25 budget negotiations. Advocates are requesting the highest funding increases possible for programs related to housing and homelessness, though the FY 25 budget will have to remain within the tight budget caps of the “Fiscal Responsibility Act of 2023,” which allows for a spending increase of only 1% in FY25 compared to FY24.
- S 570/H.R. 1342, Medicaid Dental Benefit Act of 2023 – Introduced by Senator Cardin, this bill requires state Medicaid programs to cover dental and oral health services for adults. It also increases the Federal Medical Assistance Percentage (i.e., federal matching rate) for such services. The Centers for Medicare & Medicaid Services (CMS) must develop oral health quality and equity measures and conduct outreach relating to such coverage. Additionally, the Medicaid and Children's Health Insurance Program (CHIP) Payment and Access Commission must report on specified information relating to adult oral health care.
- S 2767/HR 5408 SSI Savings Penalty Elimination Act – This bipartisan, bicameral bill was reintroduced in the Senate and House. The bill will update SSI’s asset limits for the first time since the 1980s to ensure people with disabilities and seniors are able to prepare themselves for a financial emergency without putting the benefits that they rely on to live at risk. After advocacy from Maine Senator Collins signed on to this bill.
- HR 7055 The Eliminating the Marriage Penalty in SSI Act (EMPSA) – This bill excludes a spouse's income and resources when determining eligibility for Supplemental Security Income (SSI), and disregards marital status when calculating the SSI benefit amount, for an adult who has a diagnosed intellectual or developmental disability. (SSI is a federal income supplement program designed to help aged, blind, and disabled individuals with limited income and resources meet basic needs.).
- S 1557/ HR 3238 The Affordable Housing Credit Improvement Act – Senator Angus King cosponsored bipartisan legislation to create nearly two million new affordable homes across the country – including thousands in Maine. The Affordable Housing Credit Improvement Act would expand the Low-Income Housing Tax Credit (LIHTC) to provide more homes for low-income people, support small businesses trying to attract workers, and fill the state’s gap of more than 20,000 affordable housing units. It appears this bill has strong bipartisan support, increasing its likelihood for passage.
- S 1332 / HR 2941 The Recognizing the Role of Direct Support Professionals Act – The Recognizing the Role of Direct Support Professionals Act would give a standard occupational classification to Direct Support Professionals, an important first step toward professionalizing this career and improving salaries and training. The Senate passed this bill the week of 5/6. The House has yet to approve its companion bill.
State Legislature Update –
Laura Cordes: The Legislature adjourned Friday 5/10, after the veto session. Bills (except for emergency bills) go into effect 90 days after adjournment. I’m happy to update the Google Doc and do a longer summary at the next meeting. But there was an unconventional moment this Session in the April when the Legislature was supposed to adjourn, they had run out of time to address bills on the Special Appropriations Table. Last Tuesday the Appropriations and Financial Affairs (AFA) Committee moved 80 bills off the Table. The Senate voted on them on Friday, but the House did not. There are a whole host of bills that didn’t get funded off the Table.
Rep. Lookner: It’s very confusing where bills stand now that were taken up by the Senate on 5/10, but not in the House. I was excited that the Supplemental Budget included $18 million for a rent relief program, as well as the funding included for affordable housing.
Cullen: I want to commend you again, Representative Lookner, for all of your work on the Housing Committee. It’s really important that people have access to affordable housing, and you were a fierce advocate for this in the 131st Legislature!
-The group echoed their appreciation for Representative Lookner as well as Laura.
Rep. Lookner: Thank you, and I’m hopeful that this will become a Standing Committee of the Legislature.
As this group knows, Laura Cordes created a Google doc for the Second Regular Session of the 131st Legislature to support the MCHQS' interest in monitoring and engaging in bills of interest. The doc contains an updated list of bills of interest.
For more information please refer to the Google Doc.
Governor’s Supplemental Budget - The Budget has been signed by the Governor.
- The Governor released the Supplemental Budget, LD 2214, in February. (Click here for the enacted Supplemental Budget.)
- These are adjustments to the biennial FY 24 and FY25 budget that was adopted last year.
- A plan that “reforms our approach to educating pre-k children with disabilities, eliminating our status as an outlier among states, and ensuring that our children receive the “free, appropriate, public education” they deserve.” (per the Governor’s State of the State Address) is included in the Supplemental Budget. Part W of the Budget is the Budget initiative pertaining to this. Part W Summary:
This bill reorganizes oversight and updates practices for serving infants, toddlers, and children with disabilities from birth to 6 years of age. The bill:
- Requires organizational improvements within the state intermediate education agency, Child Development Services, including data and financial systems improvements, expansion of eligibility for Part C early intervention services, and allows for extended Part C option to continue IFSPs until the start of the school year when the child is 4 years of age, if the family chooses this.
- Provides that, beginning July 2029, all school administrative units are responsible for child find and ensuring a free, appropriate public education for resident children eligible under IDEA Part B Section 619, whether or not the school administrative units operate public preschool programs, and requires the Department of Education to implement a funding formula to provide funds for school administrative units when they assume responsibility for the Section 619 children.
- Reorganizes the resources and staffing in CDS Part B to support the work of schools through regional service hubs.
- Establishes the Preschool Special Education Fund and authorizes the distribution of funds to school administrative units who have voluntarily assumed the free, appropriate public education for the costs of special education and related services for children aged 3 through 5. Bills on the Special Appropriations Table require funding for passage and would likely need to be pulled from the Table and included in the Supplemental Budget in order to be funded.
- Also included in the enacted Supplemental Budget through the Budget Change Package: $22 million in one-time funding to build more housing in Maine: $11 million to the Rural Affordable Rental Housing Program, created by the Governor and the Legislature, and $11 million to leverage an additional $11 million in Federal low-income housing tax credits. This increase in funding is estimated to create more than 150 new housing units. It also builds on the $10 million the Governor has proposed in her supplemental budget for the Affordable Homeownership Program, which will allow for an estimated 130 new single-family homes in Maine.
Bills of Interest: To look up any bill click on this link and enter the bill number:
Cullen: I want to thank everyone for all of their advocacy throughout the Legislative Session. Thank you for raising your voice and telling your stories! Every seat in the Legislature will be up for election/re-election this fall. Please continue to raise your voice and tell your stories. This Coalition strives to be an informational clearinghouse, and a vehicle for collective grassroots advocacy – striving to make the world a better place for people with disabilities, a world in which they can truly live, be included in their communities, and they can launch and thrive. Sharing personal stories is the most effective form of advocacy and is essential to ensure we move the needle forward. Thank you all!
Other Business:
The next meeting will be on Monday, June 10, 2024, 12-2pm, via Zoom*.
Featured Speakers: Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP). Topic: Wrap-up of the Second Session of the 131st Legislature, including the enacted Supplemental Budget and what bills were enacted pertaining to the continuum of care for people with intellectual/developmental disabilities.
And, Julianne Zaharis, Community Work Incentives Coordinator, Maine Medical Center Dept. of Vocational Services. Topic: Overview of the Benefits Counseling Services Program
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2024 the October and November meetings will be the 3rd Monday due to the holidays)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Other Business:
- Click here for a Flyer for the SUFU Annual Statewide Conference Workshop Proposal Request flyer
- Click here for the SUFU Leadership Development Application
The next meeting will be on Monday, June 10, 2024, 12-2pm, via Zoom*.
Featured Speakers: Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP). Topic: Wrap-up of the Second Session of the 131st Legislature, including the enacted Supplemental Budget and what bills were enacted pertaining to the continuum of care for people with intellectual/developmental disabilities.
And, Julianne Zaharis, Community Work Incentives Coordinator, Maine Medical Center Dept. of Vocational Services. Topic: Overview of the Benefits Counseling Services Program
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2024 the October and November meetings will be the 3rd Monday due to the holidays)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].