October 17, 2022
Minutes
Minutes
Attendees via Zoom: Alli Vercoe, Amanda Parker, Betsy Hopkins, Betsy Morrison, Bonnie Robinson, Brenda Smith, Carol Snyder, Chris Call, Craig Patterson, David Cowing, Elizabeth Hansen, J. Richardson Collins, Jamie Whitehouse, JC Edelberg, Julianne Zaharis, Kim Humphrey, Lane Simsarian, Lauren Wille, Lily Lin, Linda Lee, LyAnn Grogan, Maggie Hoffman, Margaret Cardoza, Mario C, Mark Kemmerle, Nancy Peavy, Rachel Dyer, Robin Levesque, Shelley Zielinski, Susan Farwell, Titus O’Rourke, Vickey Merrill, and Cullen Ryan.
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 Speakers: Teresa Barrows, Children’s Behavioral Health Services Manager, DHHS-OCFS, www.maine.gov/dhhs/ocfs, and Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. www.maine.gov/dhhs/oads. Topic: An update on the transition work between Children’s Behavioral Health Services and the Office of Aging and Disability Services to optimize transitions.
Cullen: Today I’m pleased to welcome Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services with DHHS-OADS. Betsy will be providing an update on the transition work between Children’s Behavioral Health Services and the Office of Aging and Disability Services to optimize transitions. Years ago, this group created the Blueprint for Effective Transition, from which OCFS and OADS built their transition work. Teresa and Betsy presented here a few months ago and Betsy is here to provide an update on their work. Thank you again for being here and keeping us all informed!
Betsy Hopkins: Thank you for having me. I heard from Teresa right before this meeting. Unfortunately, Teresa is unable to be here. If there are specific questions that come up for OCFS, I’ll take notes and she can answer them after the fact.
Begin presentation (Click here for the presentation):
Betsy provided a thorough overview of the “Current State” slide which includes a diagram consisting of: Seven (7) domains; where OCFS, Transition, and OADS fit into each domain; and what the barriers are for each domain.
Betsy provided a review of the Lifespan Project slide, which includes supports beginning earlier in the Lifespan, with children as young as 14 or 16 – the age for which was developed based on significant input from stakeholders.
Betsy: We’re in the early stages of the Lifespan Project. On October 27th there will be an informational session on where we are with the Lifespan Project (see the OADS update later on in the minutes for more information on this).
There are youth who get lost moving from OCFS to OADS; we’re hoping the Transition Liaison positions will remedy this and remove any additional existing barriers youth and their families often encounter. We’re really excited about this work moving forward. We’ve incorporated a lot of people’s feedback, including shared on-going concerns about transitioning from OCFS to OADS services. I’m really hoping that this transition project and the Lifespan Project will help address a lot of the gaps in the system and the challenges people have encountered.
Discussion:
-A self-advocate stated that she hopes Children’s Services has contemplated the birth to three (3) year-old age range because this stage of life is so important for children and families need a lot of consistent help. She added that though the Lifespan Project sounds very promising, people and their unique individuality must be contemplated as well. She stated that there is still a waitlist for services. When people are waiting for services, their needs are not being met and they feel abandoned by everyone including the system. If services are not available, it complicates implementing these promising initiatives. There ought to be alternatives, including alternatives for people when they’re on the waiting list, sometimes for years.
Betsy: I will definitely share the information about the birth to three (3) year-old age range with OCFS. We want the Lifespan Project to provide alternatives to what exists now, including some creative, alternative solutions. We hear that people would like to have different choices to round out what they want to do with their lives, and have it included as part of the PCP (Person-Centered Planning) process. Some things we’re talking about include:
-A parent and former special educator stated that starting early, at age 14 or 16, is very important, but it’s more than just about the bureaucracy or education. He stated it was a journey for him and his wife to realize how much support their son needed and what his needs would be when he was an adult. It’s hard for a parent to conceptualize what their child is going to do for the rest of their lives at age 14 or 16 – society doesn’t ask that of neurotypical kids at that age. It’s a journey for families and parents too, and it can’t happen all at once.
Betsy: I focused a lot on transition as part of the Lifespan Project work, but it truly is about the full lifespan. As we age, grow, and learn we develop different needs and interests. We’re hoping that the Lifespan Project can help adapt to that. So, when the individual or their family age there will be different supports available for that person and they won’t have to move to a different waiver.
-Many people stated that Betsy’s presentation was fantastic, with very easily understandable graphics. A parent stated that she’s a huge proponent of the Lifespan Project but is curious about the assessment process. She asked how the assessment for supports will be initiated, and as one moves through the lifespan and desires and needs change, how this is reassessed. She stated that she’s filled with test anxiety.
Betsy: We will be implementing the Path for ME assessment, which will be the tool that’s used for people as they come into the Lifespan Project. For the first year this assessment will be used as a data collection tool to learn more and look at the needs in our system. After that process we’ll better be able to answer those types of questions.
-Transition is an important tipping point – things can go very well, or they can fail miserably. It was asked if there are policies and/or procedures that need to change to address these gaps in the system.
Betsy: There will definitely be some updates needed to our Rules for this. OADS has never served youth starting at age 14, we don’t have anything in place for that so planning for that policy change will be major. The Lifespan Project will require its own Rule as well. The work that needs to be done around the Rules will provide people more opportunities to provide feedback as well.
-It was asked how monitoring will work for parents as caregivers. It was stated that the needs, wants, and desires of individuals aren’t always considered when parents/family members are at the helm of planning and decision-making.
Betsy: Parents and/or guardians cannot be case managers. There has to be a Case Manager separate from parents, and case managers can absolutely help people advocate for their wants and needs.
Cullen: Back when we were creating the Blueprint for Effective Transition the group kept stressing how important it is for things to happen early. A lot can be left out of the planning processes during that transition from adolescence to adulthood. I wonder if you could elaborate on what you’re optimistic about with the work between OCFS and OADS.
Betsy: The Transition Liaisons, which is a pilot project, won’t change whole systems overnight, but our hope is that by having these additional positions whose only focus is this transition process for youth coming into the adult system the process will be improved. They will be bringing in school systems and Voc Rehab and providing resources and assistance to families. We’ve heard a lot that parents and families who have a lot of connections have learned how to navigate these processes, but there are many family members who don’t have those connections and aren’t able to navigate the system at all let alone with ease. We want the system to be navigated easily, with everyone having equitable access to needed information. We also want the process itself to be streamlined. When we think about the Lifespan Project in addition to the Transition Liaisons it’s even more exciting and promising, providing consistent services throughout the lifespan through transition and beyond.
Cullen: Special Education and school-based services do a great job with setting youth up for success with employment skill development and independent living skills training. They plan for a transition to employment. My son was able to get out into the community, volunteer in work settings, and learn a lot of skills. What I’ve witnessed, through my son’s experience and others, is that when people move into adult services this ball tends to get dropped – there’s a marked difference when school ends and those employment skills fade, and connections and relationships formed dissolve.
-It was stated that the concept of a warm handoff, which is a prevalent model in the medical field, provides a connection between providers as one transitions. This is essential. The providers are very different and the relationship changes. The Lifespan Project supports this model. The Institute for Exceptional Care in Washington, DC, is a fairly new organization working on policy and projects for transformation/innovation in the IDD health care space. They developed the theory of the Three C’s: Smarter Coverage, Stronger Connections, and Better Care. Their work fits nicely with the Lifespan integrated services model as well as the LD 924 Task Force’s work. Parents and former special educators stressed the importance of a warm handoff for continuity for youth. Additionally starting earlier at age 14 or 16 with eligibility assessments is critical to avoid people falling off the cliff of no services. It was stated that supported decision-making and guardianship needs to be considered in all of this as well. These are all intersecting issues.
Betsy: Thank you for bringing all of this up. I would love for the Transition Liaisons to discuss this with you once they’re on board.
-It was stated that it might be helpful for the Transition Liaisons to reach out to agencies that provide both children’s and adult services. It was stated that there is a statewide shortage for adult case management. We need to solve for this and determine how to continue to keep case managers in this field. It was stated that having KEPRO included in all of these conversations is necessary, too.
Betsy: Thank you for bringing this up. I’ll say that we’re really hoping it’s one case management system starting at age 14, and that it mirrors the current adult case management system.
-It was stated that Maine has a community college system that is now free, which could be much more responsive and useful for people with disabilities.
Cullen: There are so many transitions that happen and there a lot of different changing relationships to navigate. In addition to losing steam with employment goals after graduation, people run into issues with the socialization aspect. I’ve heard far too many stories of people who used to be social and included in their communities throughout their school years, who became isolated and experienced a regression in skills once they graduated. Relationships are key for community inclusion and having continuity from as early as age 14 through to adulthood would really be advantageous. I want to commend you and Teresa, who sadly couldn’t be here today, on all of this work. You’ve contemplated a lot of important aspects of the system, have listened to feedback, and are building a system that will help people launch and launch well. Thank you for all of your thoughtful, incredible work on this; well done!
Featured Speaker: Linda Lee and Maggie Hoffman, Parents and Task Force Co-Chairs. Topic: Update on the LD 924 Task Force, including the 2022 Task Force Report.
Cullen: Today we are also joined by Linda Lee and Maggie Hoffman, Parents and LD 924 Task Force Co-Chairs, providing an update on the LD 924 Task Force, including the 2022 LD 924 Task Force Report. Thank you for being here today, Linda and Maggie, and keeping us up to date on the Task Force’s work!
Linda Lee: Thank you for having me and giving Maggie and I the opportunity to discuss LD 924, which ties into Betsy’s presentation beautifully. The Task Force’s 2022 Report sadly highlights many ways in which the system doesn’t work. I’m a living example of this. My son is going to be 24 years old in two weeks. At age 21 he aged out of school and has been home with me ever since. He doesn’t go out on his own, he holds my hand in parking lots because he’s scared, etc. For parents, the biggest weight on our hearts is what’s going to happen to our children when we’re older, when we’re no longer here. A group of parents got together and worked with legislators to introduce and after three years of tireless work finally pass LD 924, Resolve, To Establish a Task Force To Study the Coordination of Services and Expansion of Educational Programs for Young Adults with Intellectual or Developmental Disabilities To Identify Barriers to Full Societal Integration. The resulting Task Force created through this bill examined the system, including data, and the cliff of no services off of which children all too often fall when they age out of school. The Task Force’s membership is broad and inclusive, and its goal was to create concrete recommendations to improve transition in Maine. Due to the silos that exist between offices and systems we weren’t able to properly examine all the data points as we would have liked.
Begin presentation (Click here for the presentation)
Maggie Hoffman: We created a ten-question, one-minute parent survey through which we gathered a lot of important information. We offered families the option to participate in another short survey, from which we gathered even more critical information. The responses from these parent surveys were staggering. Only 12.10% of respondents said that their adult son or daughter were employed in an integrated setting for more than 10 hours per week, earning at least minimum wage.
Linda: Maine became an Employment First state in 2010, yet there has been no significant increase in people with disabilities being meaningfully employed since 2013. One of the recommendations is to create an Employment First Office to better address this. Another recommendation is creating a Transition Hub where people can easily access information on transition online.
Titus O’Rourke: We have submitted the 2022 LD 924 Report and are awaiting feedback.
-The group thanked everyone involved with the Task Force for their work, stating that it is very promising.
Cullen: Thank you both for sharing this information with us and for everyone’s work on the LD 924 Task Force! Systems change is slow, and though work remains it appears that we’ve moving forward in a very promising direction. Thank you all again, well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: I’ll go through a couple of quick updates from OADS:
Registration Link: https://mainestate.zoom.us/meeting/register/tZYof-urrzwtGNyBS2qT8zcMrZu3d8u5Nn2s
If you require 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] by October 17th.
After registering, you will receive a confirmation email containing information about joining the webinar. In addition to these public webinars, we will also be circulating a survey to solicit input in the upcoming weeks. If you have questions, please email [email protected]
Cullen: Thank you for being here, Betsy, and for all this information!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs – No additional updates.
DOL – Division of Vocational Rehabilitation - www.maine.gov/rehab/dvr – No update
Libby Stone-Sterling could not attend today’s meeting, but she passed along the following information on to share with the group:
Special Education
Titus O’Rourke – Office of Special Services and Inclusive Education (OSSIE): Our focus moving forward is on inclusion. As I indicated earlier, we have submitted the LD 924 Report and are awaiting a response. Our office is also information on the shortage of teachers, stemming from LD 138. Many teachers report a major barrier to attaining employment is housing – part of the teacher shortage is that teachers cannot find housing near the school districts in which they’d like to work. This is especially evident in the midcoast area.
Cullen: There is a distinct shortage of housing, specifically so for affordable and workforce housing. In Maine, housing hasn’t been developed at a rate commensurate with need since the 1970’s. I want to commend you on the name change and focus on inclusion, which is wonderful! I also want to thank you for being here and for your work on all of this!
SMACT (Southern Maine Advisory Council on Transition):
Nancy Peavy: This year’s SMACT meetings will be held quarterly. The October meeting featured Elizabeth Newport, Public Affairs Specialist with the Social Security Administration presenting on Social Security benefits for teens and young adults with disabilities and how working affects Social Security benefits and other public benefits. The rest of the year’s meetings will be the first Friday of March and May.
Cullen: The SMACT website and the Coalition website are cross-linked for convenience and 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:
Lane Simsarian: I’m the new Health Communicator at DRM. I wanted to introduce myself, my role, and provide my contact information. My role is related to vaccine hesitancy, specifically related to COVID-19 as well as the flu. I’ll be working on messaging and expanding access to vaccines for people with disabilities. I want this group to know they can use me as a resource, so feel free to reach out (email: [email protected]; telephone: 207.626.2774 x263)!
Lauren Wille: I wanted to briefly share some of our work around voting. We really want to increase our efforts on broadening education on voting and voter registration, to help remove barriers to voting and to educate and train people on voter’s right. We’ve been having a lot of voter’s rights and voter registration fairs, educating people on where you vote, how you vote, etc. (Click here for more information.)
LD 924 Task Force Update: No additional updates.
Federal & Housing Updates:
Cullen:
State Legislature Update
Cullen: There is an election coming up in November; please vote. Voting is extremely important. The results of this election will shape the future of services in Maine for years to come. I also want to encourage you to connect with candidates running for office in your area, educate them about you and your family’s needs – this is a wonderful time to tell your story!
Other Business:
The next meeting will be on Monday, November 14, 2022, 12-2pm, via Zoom*.
Featured Speakers and Topic TBD.
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 Speakers: Teresa Barrows, Children’s Behavioral Health Services Manager, DHHS-OCFS, www.maine.gov/dhhs/ocfs, and Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. www.maine.gov/dhhs/oads. Topic: An update on the transition work between Children’s Behavioral Health Services and the Office of Aging and Disability Services to optimize transitions.
Cullen: Today I’m pleased to welcome Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services with DHHS-OADS. Betsy will be providing an update on the transition work between Children’s Behavioral Health Services and the Office of Aging and Disability Services to optimize transitions. Years ago, this group created the Blueprint for Effective Transition, from which OCFS and OADS built their transition work. Teresa and Betsy presented here a few months ago and Betsy is here to provide an update on their work. Thank you again for being here and keeping us all informed!
Betsy Hopkins: Thank you for having me. I heard from Teresa right before this meeting. Unfortunately, Teresa is unable to be here. If there are specific questions that come up for OCFS, I’ll take notes and she can answer them after the fact.
Begin presentation (Click here for the presentation):
Betsy provided a thorough overview of the “Current State” slide which includes a diagram consisting of: Seven (7) domains; where OCFS, Transition, and OADS fit into each domain; and what the barriers are for each domain.
Betsy provided a review of the Lifespan Project slide, which includes supports beginning earlier in the Lifespan, with children as young as 14 or 16 – the age for which was developed based on significant input from stakeholders.
Betsy: We’re in the early stages of the Lifespan Project. On October 27th there will be an informational session on where we are with the Lifespan Project (see the OADS update later on in the minutes for more information on this).
There are youth who get lost moving from OCFS to OADS; we’re hoping the Transition Liaison positions will remedy this and remove any additional existing barriers youth and their families often encounter. We’re really excited about this work moving forward. We’ve incorporated a lot of people’s feedback, including shared on-going concerns about transitioning from OCFS to OADS services. I’m really hoping that this transition project and the Lifespan Project will help address a lot of the gaps in the system and the challenges people have encountered.
Discussion:
-A self-advocate stated that she hopes Children’s Services has contemplated the birth to three (3) year-old age range because this stage of life is so important for children and families need a lot of consistent help. She added that though the Lifespan Project sounds very promising, people and their unique individuality must be contemplated as well. She stated that there is still a waitlist for services. When people are waiting for services, their needs are not being met and they feel abandoned by everyone including the system. If services are not available, it complicates implementing these promising initiatives. There ought to be alternatives, including alternatives for people when they’re on the waiting list, sometimes for years.
Betsy: I will definitely share the information about the birth to three (3) year-old age range with OCFS. We want the Lifespan Project to provide alternatives to what exists now, including some creative, alternative solutions. We hear that people would like to have different choices to round out what they want to do with their lives, and have it included as part of the PCP (Person-Centered Planning) process. Some things we’re talking about include:
- Self-directed options for families and youth starting as young as age 14 so if they can’t find the services they want or need through an agency they can find it through different avenues.
- Tiered shared living so that support needs are covered in the rate for what people might need, including additional behavioral supports etc.
- Different living options, as we hear from people that they want to live on their own or with a roommate, but they need supports to do so.
-A parent and former special educator stated that starting early, at age 14 or 16, is very important, but it’s more than just about the bureaucracy or education. He stated it was a journey for him and his wife to realize how much support their son needed and what his needs would be when he was an adult. It’s hard for a parent to conceptualize what their child is going to do for the rest of their lives at age 14 or 16 – society doesn’t ask that of neurotypical kids at that age. It’s a journey for families and parents too, and it can’t happen all at once.
Betsy: I focused a lot on transition as part of the Lifespan Project work, but it truly is about the full lifespan. As we age, grow, and learn we develop different needs and interests. We’re hoping that the Lifespan Project can help adapt to that. So, when the individual or their family age there will be different supports available for that person and they won’t have to move to a different waiver.
-Many people stated that Betsy’s presentation was fantastic, with very easily understandable graphics. A parent stated that she’s a huge proponent of the Lifespan Project but is curious about the assessment process. She asked how the assessment for supports will be initiated, and as one moves through the lifespan and desires and needs change, how this is reassessed. She stated that she’s filled with test anxiety.
Betsy: We will be implementing the Path for ME assessment, which will be the tool that’s used for people as they come into the Lifespan Project. For the first year this assessment will be used as a data collection tool to learn more and look at the needs in our system. After that process we’ll better be able to answer those types of questions.
-Transition is an important tipping point – things can go very well, or they can fail miserably. It was asked if there are policies and/or procedures that need to change to address these gaps in the system.
Betsy: There will definitely be some updates needed to our Rules for this. OADS has never served youth starting at age 14, we don’t have anything in place for that so planning for that policy change will be major. The Lifespan Project will require its own Rule as well. The work that needs to be done around the Rules will provide people more opportunities to provide feedback as well.
-It was asked how monitoring will work for parents as caregivers. It was stated that the needs, wants, and desires of individuals aren’t always considered when parents/family members are at the helm of planning and decision-making.
Betsy: Parents and/or guardians cannot be case managers. There has to be a Case Manager separate from parents, and case managers can absolutely help people advocate for their wants and needs.
Cullen: Back when we were creating the Blueprint for Effective Transition the group kept stressing how important it is for things to happen early. A lot can be left out of the planning processes during that transition from adolescence to adulthood. I wonder if you could elaborate on what you’re optimistic about with the work between OCFS and OADS.
Betsy: The Transition Liaisons, which is a pilot project, won’t change whole systems overnight, but our hope is that by having these additional positions whose only focus is this transition process for youth coming into the adult system the process will be improved. They will be bringing in school systems and Voc Rehab and providing resources and assistance to families. We’ve heard a lot that parents and families who have a lot of connections have learned how to navigate these processes, but there are many family members who don’t have those connections and aren’t able to navigate the system at all let alone with ease. We want the system to be navigated easily, with everyone having equitable access to needed information. We also want the process itself to be streamlined. When we think about the Lifespan Project in addition to the Transition Liaisons it’s even more exciting and promising, providing consistent services throughout the lifespan through transition and beyond.
Cullen: Special Education and school-based services do a great job with setting youth up for success with employment skill development and independent living skills training. They plan for a transition to employment. My son was able to get out into the community, volunteer in work settings, and learn a lot of skills. What I’ve witnessed, through my son’s experience and others, is that when people move into adult services this ball tends to get dropped – there’s a marked difference when school ends and those employment skills fade, and connections and relationships formed dissolve.
-It was stated that the concept of a warm handoff, which is a prevalent model in the medical field, provides a connection between providers as one transitions. This is essential. The providers are very different and the relationship changes. The Lifespan Project supports this model. The Institute for Exceptional Care in Washington, DC, is a fairly new organization working on policy and projects for transformation/innovation in the IDD health care space. They developed the theory of the Three C’s: Smarter Coverage, Stronger Connections, and Better Care. Their work fits nicely with the Lifespan integrated services model as well as the LD 924 Task Force’s work. Parents and former special educators stressed the importance of a warm handoff for continuity for youth. Additionally starting earlier at age 14 or 16 with eligibility assessments is critical to avoid people falling off the cliff of no services. It was stated that supported decision-making and guardianship needs to be considered in all of this as well. These are all intersecting issues.
Betsy: Thank you for bringing all of this up. I would love for the Transition Liaisons to discuss this with you once they’re on board.
-It was stated that it might be helpful for the Transition Liaisons to reach out to agencies that provide both children’s and adult services. It was stated that there is a statewide shortage for adult case management. We need to solve for this and determine how to continue to keep case managers in this field. It was stated that having KEPRO included in all of these conversations is necessary, too.
Betsy: Thank you for bringing this up. I’ll say that we’re really hoping it’s one case management system starting at age 14, and that it mirrors the current adult case management system.
-It was stated that Maine has a community college system that is now free, which could be much more responsive and useful for people with disabilities.
Cullen: There are so many transitions that happen and there a lot of different changing relationships to navigate. In addition to losing steam with employment goals after graduation, people run into issues with the socialization aspect. I’ve heard far too many stories of people who used to be social and included in their communities throughout their school years, who became isolated and experienced a regression in skills once they graduated. Relationships are key for community inclusion and having continuity from as early as age 14 through to adulthood would really be advantageous. I want to commend you and Teresa, who sadly couldn’t be here today, on all of this work. You’ve contemplated a lot of important aspects of the system, have listened to feedback, and are building a system that will help people launch and launch well. Thank you for all of your thoughtful, incredible work on this; well done!
Featured Speaker: Linda Lee and Maggie Hoffman, Parents and Task Force Co-Chairs. Topic: Update on the LD 924 Task Force, including the 2022 Task Force Report.
Cullen: Today we are also joined by Linda Lee and Maggie Hoffman, Parents and LD 924 Task Force Co-Chairs, providing an update on the LD 924 Task Force, including the 2022 LD 924 Task Force Report. Thank you for being here today, Linda and Maggie, and keeping us up to date on the Task Force’s work!
Linda Lee: Thank you for having me and giving Maggie and I the opportunity to discuss LD 924, which ties into Betsy’s presentation beautifully. The Task Force’s 2022 Report sadly highlights many ways in which the system doesn’t work. I’m a living example of this. My son is going to be 24 years old in two weeks. At age 21 he aged out of school and has been home with me ever since. He doesn’t go out on his own, he holds my hand in parking lots because he’s scared, etc. For parents, the biggest weight on our hearts is what’s going to happen to our children when we’re older, when we’re no longer here. A group of parents got together and worked with legislators to introduce and after three years of tireless work finally pass LD 924, Resolve, To Establish a Task Force To Study the Coordination of Services and Expansion of Educational Programs for Young Adults with Intellectual or Developmental Disabilities To Identify Barriers to Full Societal Integration. The resulting Task Force created through this bill examined the system, including data, and the cliff of no services off of which children all too often fall when they age out of school. The Task Force’s membership is broad and inclusive, and its goal was to create concrete recommendations to improve transition in Maine. Due to the silos that exist between offices and systems we weren’t able to properly examine all the data points as we would have liked.
Begin presentation (Click here for the presentation)
Maggie Hoffman: We created a ten-question, one-minute parent survey through which we gathered a lot of important information. We offered families the option to participate in another short survey, from which we gathered even more critical information. The responses from these parent surveys were staggering. Only 12.10% of respondents said that their adult son or daughter were employed in an integrated setting for more than 10 hours per week, earning at least minimum wage.
Linda: Maine became an Employment First state in 2010, yet there has been no significant increase in people with disabilities being meaningfully employed since 2013. One of the recommendations is to create an Employment First Office to better address this. Another recommendation is creating a Transition Hub where people can easily access information on transition online.
Titus O’Rourke: We have submitted the 2022 LD 924 Report and are awaiting feedback.
-The group thanked everyone involved with the Task Force for their work, stating that it is very promising.
Cullen: Thank you both for sharing this information with us and for everyone’s work on the LD 924 Task Force! Systems change is slow, and though work remains it appears that we’ve moving forward in a very promising direction. Thank you all again, well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: I’ll go through a couple of quick updates from OADS:
- Home and Community Based Settings (HCBS) Lifespan Project State-Wide Listening Session – Please join the Department of Health and Human Services’ Offices of Aging and Disability Services (OADS), Child and Family Services (OCFS), and MaineCare Services (OMS) on October 27th at 4 p.m. for a presentation and listening session on a proposed Lifespan Project for individuals with Intellectual and Developmental Disabilities (IDD). Maine is pleased to announce we have hired Dr. Lisa Mills to assist with this exciting project. Dr. Mills has worked with and for people with IDD for more than 30 years, including work with state Medicaid and IDD agencies on innovations in services, supports, funding strategies, and other solutions to better and more seamlessly meet the needs and goals of individuals with IDD across their lifespans. Dr. Mills will facilitate this session and provide a summary of feedback on the Lifespan project previously gathered at three regional sessions with waiver members and families and three sessions with MaineCare providers. This session will also provide an opportunity for participants to share their initial reactions to the feedback gathered from around the state as well as hear about next steps and a proposed timeline of the project.
- Greater Flexibility to Address Goals and Needs that Naturally Change Across the Lifespan – The Lifespan project will consider the changing goals and needs of Individuals with IDD and Autism, such as those based on age.
- Improved Transition and In-Home Services – The Lifespan project will strengthen current efforts to support successful transition from childhood to adulthood by including children starting at either 14 or 16 (to be determined). In-home supports, including supports for learning skills for community living, and employment services could begin at transition-age (when they are most effective for ensuring successful employment in adulthood) and could continue seamlessly into adulthood.
- Innovation – The Lifespan project will be a vehicle for innovations for waiver members and their families, such as tiered shared living services, enhanced medical and behavioral health supports, self-direction, innovative employment supports, and more independent and supported living options. In different ways, these innovations offer strategies that can be part of the solution to the workforce shortages currently faced across the state and nation.
Registration Link: https://mainestate.zoom.us/meeting/register/tZYof-urrzwtGNyBS2qT8zcMrZu3d8u5Nn2s
If you require 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] by October 17th.
- Innovation Grants – We are still accepting applications for Innovation Grants; these are due on 11/8. We had two rounds of questions to which we’ve responded. (Click here for those questions and OADS’ responses, which are located about 1/3 down the page.) (Click here for the Q&A Summary & Amendment #1 download; click here for the Q&A Summary #2 download.)
- Public Stakeholder Sessions: Statewide Strategic Plan To Serve Maine People with Behavioral Health Needs throughout Their Lifespans – The Maine Department of Health and Human Services is pleased to invite you to provide input on a comprehensive statewide strategic plan to serve people in the State with behavioral health needs throughout their lifespans (LD 1262).
You are invited to participate in the development of this strategic plan by attending a public stakeholder session on either October 28 or November 4, 2022. Both sessions will be identical. Please click the corresponding link below to register for one of the dates and feel free to share this invitation with other interested organizations who may wish to be represented.- Friday, October 28, 2022 – 12:00-1:30pm
- Friday, November 4, 2022 – 12:00-1:30pm
After registering, you will receive a confirmation email containing information about joining the webinar. In addition to these public webinars, we will also be circulating a survey to solicit input in the upcoming weeks. If you have questions, please email [email protected]
- DHHS-Cutler Institute Autism Services Satisfaction Survey – On behalf of the Department of Health and Human Services, the Cutler Institute at the University of Southern Maine is conducting a survey of individuals with autism spectrum disorder and their families to find out how you feel about the services you receive in Maine’s system of care for people with autism.
Autism Services Satisfaction Survey
Participation in this survey is completely voluntary and will not impact any services and benefits you or your family member are entitled to and/or receiving now. Your name or other identifying information will not be collected. Your responses will be combined with the responses from everyone else who takes the survey.
Cullen: Thank you for being here, Betsy, and for all this information!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs – No additional updates.
DOL – Division of Vocational Rehabilitation - www.maine.gov/rehab/dvr – No update
Libby Stone-Sterling could not attend today’s meeting, but she passed along the following information on to share with the group:
- Maine Working Together Workforce Development System – The Maine Departments of Labor, Education and Health and Human Services are pleased to announce the new Employment Workforce Development System which began in July 2022. The Maine Working Together Workforce Development System focuses on providing training and education for employment services providers and for human services providers and educators supporting individuals with disabilities on the pathway to employment. The Maine Departments of Labor, Education and Health & Human Services utilize the Employment First Maine Statute to set direction which ensures a competitive first and preferred outcome employment for individuals with disabilities supported by these agencies. The Institute for Community Inclusion at UMass has been awarded the contract for this workforce development system. Together with the three (3) State Departments and a Maine advisory group, they will be developing and implementing a comprehensive system of training and support in Maine to educators and school assigned transition coordinators, case managers, employment specialists and state agency staff with the goal of creating a strong, well-trained and knowledgeable employment service workforce statewide. The Maine Working Together project will provide training, resources, and assistance to Employment Services providers, teachers, case managers, and other professionals to support quality employment outcomes in Maine. An Advisory Committee will be developed soon and will be seeking members to assist in the oversight and guidance of the Workforce system- stay tuned! The new Website can be found at www.maineworkingtogether.org. (Click here for more information.)
- Maine Working Together Workforce Development System Training – We are holding an ACRE basic Employment Certificate Training. The training will include the latest techniques for job development and supports, information on increasing placement and retention rates, and an opportunity to earn the ACRE nationally recognized certificate. (Click here for more information and to register.)
- Maine State Rehabilitation Council Annual Meeting – The Maine State Rehabilitation Council that is always looking for additional members. The Council has its annual meeting in October and meets bi-monthly throughout the year (click here for information on the annual meeting including how to attend via Zoom). The Council is really hoping for additional voices from consumers – it would be great to have people from this group on the Council.
Special Education
Titus O’Rourke – Office of Special Services and Inclusive Education (OSSIE): Our focus moving forward is on inclusion. As I indicated earlier, we have submitted the LD 924 Report and are awaiting a response. Our office is also information on the shortage of teachers, stemming from LD 138. Many teachers report a major barrier to attaining employment is housing – part of the teacher shortage is that teachers cannot find housing near the school districts in which they’d like to work. This is especially evident in the midcoast area.
Cullen: There is a distinct shortage of housing, specifically so for affordable and workforce housing. In Maine, housing hasn’t been developed at a rate commensurate with need since the 1970’s. I want to commend you on the name change and focus on inclusion, which is wonderful! I also want to thank you for being here and for your work on all of this!
SMACT (Southern Maine Advisory Council on Transition):
Nancy Peavy: This year’s SMACT meetings will be held quarterly. The October meeting featured Elizabeth Newport, Public Affairs Specialist with the Social Security Administration presenting on Social Security benefits for teens and young adults with disabilities and how working affects Social Security benefits and other public benefits. The rest of the year’s meetings will be the first Friday of March and May.
Cullen: The SMACT website and the Coalition website are cross-linked for convenience and 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:
Lane Simsarian: I’m the new Health Communicator at DRM. I wanted to introduce myself, my role, and provide my contact information. My role is related to vaccine hesitancy, specifically related to COVID-19 as well as the flu. I’ll be working on messaging and expanding access to vaccines for people with disabilities. I want this group to know they can use me as a resource, so feel free to reach out (email: [email protected]; telephone: 207.626.2774 x263)!
Lauren Wille: I wanted to briefly share some of our work around voting. We really want to increase our efforts on broadening education on voting and voter registration, to help remove barriers to voting and to educate and train people on voter’s right. We’ve been having a lot of voter’s rights and voter registration fairs, educating people on where you vote, how you vote, etc. (Click here for more information.)
LD 924 Task Force Update: No additional updates.
Federal & Housing Updates:
Cullen:
- FY 23 Budget: The President signed a short-term Continuing Resolution (CR) on 9/30, averting a government shutdown. The CR funds the federal government at FY 22 levels through 12/16, when Congress would have to either pass an Omnibus spending bill for FY 23 or another CR. Staff in DC have stated that the current top line asks in each chamber’s appropriations bills don’t account for the other chamber’s congressional earmarks, nor do they account for the anticipated need for increased Defense spending. This likely means that the topline figures will be decreased, and the final T-HUD budget could be lower than what the House and Senate have proposed.
- National Housing Trust Fund: There are various efforts in Congress to increase the National Housing Trust Fund, including the Homes for All Act which would invest $200 billion over 10 years into the National Housing Trust Fund. And, the Housing for All Act of 2022, which would invest $45 billion into the National Housing Trust Fund. In Maine, resources from the HTF are the primary funding mechanism for supportive housing development.
State Legislature Update
Cullen: There is an election coming up in November; please vote. Voting is extremely important. The results of this election will shape the future of services in Maine for years to come. I also want to encourage you to connect with candidates running for office in your area, educate them about you and your family’s needs – this is a wonderful time to tell your story!
Other Business:
The next meeting will be on Monday, November 14, 2022, 12-2pm, via Zoom*.
Featured Speakers and Topic TBD.
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].