December 11, 2023
Minutes
Minutes
Attendees via Zoom: Amanda Parker, Ann Marie Mayberry, Bonnie-Jean Brooks, Carol Snyder, Christine Walker, Craig Patterson, David Cowing, Derek Fales, Elizabeth Hansen, Hanna Daigle, Helen Hemminger, J Richardson Collins, Jamie Whitehouse, Jen Greslick, Jennifer, Jessica Cavanaugh, Josh, Julianne Zaharis, Kim Humphrey, Lane Simsarian, Laura Sarnie, Lorraine DeFreitas, Lucas Cuellar, LyAnn Grogan, Margaret Cardoza, Michaela York, RJ Adler, Robin Levesque, Robyn Thom, Shane Ashe, Shelley Zielinski, Todd Goodwin, Vickey Merrill, Cullen Ryan, and a few people who didn’t identify themselves and/or left prior to the conclusion of the meeting.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Jen Greslick, Program Manager, Integrated Studies, Saint Joseph’s College of Maine. www.sjcme.edu/integrated-studies-program Topic: Integrated Studies Program.
Cullen: I am pleased to welcome Jen Greslick, Program Manager, Integrated Studies at Saint Joseph’s College of Maine presenting on the Integrated Studies Program. Thank you for being here, Jen!
Jen Greslick: Thank you for having me!
Begin presentation (Click here for the presentation).
Jen: I started working at St. Joseph’s College about five years ago. The campus is beautiful, and it is small. All of the classes are in one centralized building (except science labs are held in another building) and the campus is very easy to navigate due to its size. This is helpful for an inclusive, immersive post-secondary education experience. We’re finishing the first semester of our pilot year of this program – we had one student enroll for the fall and she did wonderfully.
Information on the Integrated Studies (IS) Program at Saint Joseph’s College of Maine (additional information, including admissions criteria, core curriculum, concentration areas, and internships is available in the presentation and on the website):
The Integrated Studies (IS) Program at Saint Joseph’s College of Maine launched a one-year pilot program beginning in the fall of 2023. The program aims to meet students where they are on their academic journey. The IS Program is a non-credit certificate created as an alternative pathway for students with intellectual disability. Students who are at least 18 years old and have completed their secondary schooling by earning a high school diploma and/or certificate are eligible to apply. The IS Program is a fully inclusive experiential learning opportunity at the postsecondary level. The long-term goal is to develop the Integrated Studies Program into a two or four-year non-credit certificate program.
Students with intellectual disability who are enrolled in Saint Joseph’s IS Program will progressively develop skills each semester. Skill development will be achieved through academic exploration, meaningful employment opportunities on and off campus, and the development of effective communication skills. Additionally, students will develop their ability to live independently on campus and enhance their technological skills. The long-term goals of the IS program include increasing students’ independence both academically and personally, expanding their employment experience through meaningful community employment opportunities, and exploring the potential of deepening their own self-awareness.
Students enrolled in the program work collaboratively with their peer partners, academic advisor, program staff, as well as professional support both on and off campus to establish a person-centered academic path. The student-centered plan includes auditing courses, participating in internships, developing individual interests, and establishing future employment goals. At the end of a student’s experience, they will earn a non-credit certificate in Integrated Studies. As part of their academic experience, students will develop a portfolio which will be a culmination of their highlighted work. Additionally, they will leave SJC with a college transcript outlining their academic courses and internship experiences.
During their enrollment at SJC, students in the IS Program will have the support to fully embrace the college experience. They will have meals with peers in Pearson’s Café, actively engage in clubs/activities based on their interests, and gain independence by participating in our Resident Living experience.
Jen: Students enrolled in the IS Program complete learning agreements for audited classes. Students work towards their individualized learning goals – setting achievable goals and creating action steps to achieve them. The goals include soft skills needed to be successful in an employment environment.
Cullen: Thank you, Jen, this appears to be a wonderful program that offers true inclusion!
Discussion:
-A self-advocate asked if the student needs to have an SAT score for admission and if SJC is an accredited college.
Jen: No, the SAT is not required. SJC is an accredited college. The Program itself is not yet as three years of data is required. However, we designed the program to meet accreditation requirements so we’re hoping as soon as we’re able to apply for accreditation for this program we’ll receive it.
- It was asked if the program counts towards an actual degree.
Jen: Because the curriculum is modified credits are not earned. If it’s found the student can do the coursework without modification, then yes. If this is the case for students, perhaps they just needed a semester under their belt, we would transfer them out of the program and into a degree program.
-It was asked if a young person who may be funded under a waiver can reside on campus and maintain waiver funding.
Jen: We’ve had conversations on this subject with OADS, but I don’t have an answer. Sections 21 and 29 can’t be used for the tuition piece of this program. There are three categories of costs – tuition (modified from the standard SJC tuition), the program support fee which could potentially be covered by waiver fees in the future, and the room and board fee.
-It was asked if the “grading” is consistent and explained to the student or if this is still being worked out.
Jen: It’s still in development. Each Department at the college is slightly different. We want to be cognizant of what Departments are already doing. We’re having those conversations individually with the student and the Professor – “a 1 in this class means this”. This is easy with one student. That’s obviously not sustainable with ten to fifteen students. But we are working towards consistency globally within the program.
-It was asked if SJC can support someone who is physically disabled.
Jen: Again, this is very individualized. We do have students on campus with disabilities, including students in wheelchairs. Some people may have needs that are too significant for SJC to meet. A modification for this could be not living on campus if someone lives within commuting distance.
-It was asked if the Certificate of Completion will be helpful for students in attaining employment after program completion.
Jen: My understanding is that this is perceived as similar to graduate-level certificates in the community. We still need to raise awareness of the program within the business community. The student will also be able to provide a portfolio of work, a transcript stating which classes were audited, a resume including internships, etc., and access to the SJC career office.
-It was stated that this was a great presentation and offers so much hope. It was asked if the school provides ASL interpreters.
Jen: That’s a very good question! We haven’t had that need arise in the time that I’ve been here, so I don’t know. As this would be needed by a student, I would imagine it would be an accommodation provided for anyone who may need it – separate from my office.
Jen: We’ve been working with various groups and put forward legislation in this Legislative Session (LR 2791) to have funding for colleges to have pilot programs and funding for students to participate in them. We’re also building a State of Maine Alliance with Think College. All in the hopes of expanding inclusive, integrated options for students.
Cullen: Thank you for your work on this and for pioneering this program in Maine, this is wonderful!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Laura Sarnie, MPH, Clinical Research Coordinator, and Robyn Thom, MD, Psychiatrist and Co-Director, MGH Williams Syndrome Program, Massachusetts General Hospital Lurie Center for Autism. rally.massgeneralbrigham.org/study/down_syndrome_depression Topic: Depression and Down syndrome study.
Cullen: Today we also have Laura Sarnie, MPH, Clinical Research Coordinator, and Robyn Thom, MD, Psychiatrist and Co-Director, MGH Williams Syndrome Program, with the Massachusetts General Hospital Lurie Center for Autism presenting on their Depression and Down syndrome study. There’s room for people to participate in this, which could open up opportunities for people from Maine. The study has very promising results so far and I’m thrilled to have Laura and Robyn here. Thank you both for presenting today!
Dr. Robyn Thom: Thank you for having us!
Begin presentation (Click here for the presentation).
Robyn: Adults with Down syndrome have a four-to-five times increased risk of developing depression compared to the general population. Despite this, no studies on the use of modern antidepressants in people who have Down syndrome have been published. The information that we do have on how antidepressants work in the general population may not be applicable to people with Down syndrome.
We did a 12-week retrospective study with 11 adults with Down syndrome. Based on the data from this study we thought it would be advantageous to do an actual trial, which Laura will speak about. Before that, I wanted to talk a little about Dementia vs depression. If it’s a younger person under 40 it’s much more likely it’s depression. For people with cognitive decline, if depressive symptoms accompany or precede the cognitive decline it’s likely depression.
Laura Sarnie: The Massachusetts General Hospital at the Lurie Center is recruiting for a new clinical trial that will evaluate the effectiveness and safety of the treatment of depression in adults with Down syndrome. We are studying how to treat depression in adults with Down syndrome. Specifically, we are investigating whether a medication (fluoxetine) that is commonly used to treat depression in the general population is helpful and safe for adults with Down syndrome. Individuals between the ages of 18 and 45 years who have Down syndrome and depression symptoms can participate in the study. For study participants, the first visit would be in-person at the Lurie Center in Lexington, MA, for an initial evaluation where we will gather a developmental, medical, and psychiatric history, conduct a mental status exam, take vital signs, and prescribe the drug fluoxetine for participants who meet eligibility criteria for the study. Fluoxetine will be prescribed to the participants' local pharmacy. After that, there would be brief, biweekly follow-up visits over a four-month period via Zoom/telephone.
Discussion:
-A self-advocate asked if this is treating chronic depression or acute.
Robyn: The study treats both. Depression is so often missed and under-diagnosed in individuals with Down syndrome people often have had symptoms for a long period of time.
-It was asked if they had found any information regarding the suicide rate for people with cognitive disabilities.
Robyn: I don’t believe we have specific data on suicide rates for adults with ID/DD. We have unpublished research on the rates of suicidal ideation for adults with autism. The results are staggering – adults with autism have had thoughts of suicide at least once in their lives.
-It was asked what the therapeutic accommodations are in addition to the medication.
Robyn: Generally speaking, the most evidenced-based treatment is cognitive behavioral therapy. People get the best results when this is combined with antidepressant medication. Therapeutic approaches always need to be modified/adapted for this population. We have seen these modifications for the treatment of anxiety but unfortunately, I’m not aware of anything like this for depression at this point in time.
-It was asked when the results of the clinical trial would be available and where they would appear.
Robyn: That’s a great question. Our study will continue to work with research participants through the end of the summer. After that, you wouldn’t believe how long it takes to clean data, analyze it, and draft a report. Best case scenario that process can take one to two years. At that point in time, we’ll send it out to journals that may be interested in publishing it.
Cullen: We’d love to have you back in the future to discuss the results of this important study!
-It was stated that dementia can come with symptoms of depression as well. It was asked if it could be the case where someone has both depression and dementia.
Robyn: For our clinical trial, if someone has a known, documented diagnosis of dementia they would not be permitted into the trial. If it’s not clear if it’s depression or dementia we would invite them in, see if it’s depression and if it is, or if it’s not clear we would proceed.
-It was stated that doses are often standardized. It was asked if the dosage is the same for a person with Down syndrome.
Robyn: In the paper we published previously, we learned that generally much smaller doses work much better for adults with Down syndrome. The average most effective dose is 15mgs per day for adults with Down syndrome and depression, while the standard typical starting dose for an adult is 20mgs. The trial includes flexible dosing – we start smaller and increase as needed/desired.
-It was stated that this is great to hear.
Cullen: Thank you both, it was excellent to have you both here. This Coalition exists to be an information clearing house for some 4000 people, but also because people here really believe we should have community inclusion for everyone. Your work here reminds me of how our medical field seems to have missed this population with research and studies. This means we’re missing key information on how dosages work for this population. Thank you for pioneering this research and working to see that the playing field is level for people with ID/DD in need of medical care/intervention. You’re on the cutting edge of helping people heal and be well. 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 - No update
Derek Fales: Betsy couldn’t join you all today so I’m here to provide updates for OADS. Following attending the WheelPad presentation at this meeting, we started our WheelPad initiative and received approval from CMS to purchase 10 WheelPad units. We also have approval from CMS for the Provider Readiness Grant Initiative as part of the Lifespan Project. This will be administered through the National Disability Institute. These grants would help providers achieve goals related to the Lifespan waiver. Rate surveys should be going out to providers very soon regarding Sections 21 and 29. This will collect cost data which will help inform the rate models for Sections 21 and 29 and will be the basis for the Lifespan rate development.
Cullen: Thank you for being here and for this information, Derek! It’s wonderful to hear about the WheelPad initiative!
-A self-advocate stated that the WheelPad initiative could open up housing arrangements and that this is great news.
RJ Adler, WheelPad: I talk to a lot of different states and people, and this is the first time where I saw real movement from the Federal government on something innovative. It’s very cool, but I’d like to pass the congratulations on to Derek!
Bonnie-Jean Brooks: This is just one example of why this Coalition is so important! On an unrelated note, I received an email from someone saying she’s working with OADS on an initiative I had never heard about regarding quality for day and community services.
Derek: Lisa Sturtevant had sent a number of emails to providers and stakeholders – we have ARPA (American Rescue Plan Act) funds to create a quality management structure and plan for Maine around meaningful day and community supports. They’re working with us on the HCBS Settings Rule and establishing quality benchmarks for day and community services.
-A self-advocate asked how the decisions about the WheelPad units will be made and if it will include self-advocates.
Derek: When we think about those policy decisions, internally we have to think about ADUs and issues that could surround them (zoning, ordinances, legal issues, etc.), then we think about who the right people are to make these decisions. However, there will definitely be work with stakeholders on this.
-It was suggested that the Department bring the SIS-A as an option to Section 21, versus just using it for Lifespan.
Derek: That’s great feedback that I’ll bring back to the team. The SIS-A is the tool we’re asking Members to take voluntarily. This isn’t a tool that will tell you what services you’re eligible for or how to enroll in Lifespan. It’s really a tool that if someone is looking at shared living or residential supports, the SIS-A would ensure there’s a tiered payment structure within that service, so the provider has a way to deliver services specific to people’s needs. This is about how you look at those services where there may be needs that require a different level of support, and how we can pay for that.
-It was asked if the waivers would be able to house someone with ID/DD and a physical disability in the new apartment development in the Downs at Scarborough.
Cullen: What I do know about this is that the entire building is designed for people with disabilities. I will note that all Low-Income Housing Tax Credit (LIHTC) buildings, which this is, must be set up to have a dedicated percentage of units that are handicapped accessible.
Derek: We are having discussions about waiver members having access to those units. There will be more information coming out regarding who’s eligible for that housing opportunity.
More information from OADS:
For up to date information on the work that is going on regarding the Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov)
-Community Resource Coordinator Recruiting – The Office of Aging and Disability Services (OADS) is piloting an enhanced case management role for the newly proposed Lifespan waiver. We are seeking an experienced leader with case management and supervision experience to help OADS build a new team of Community Resource Coordinators to support individuals with IDD/ASD in their community. Click here for more information.
-Proposed HCBS Lifespan Waiver: Stakeholder Informational and Listening Session for Self-Advocates – Please join the Office of Aging and Disability Services as we host an informational listening session. This session is focused on individuals who are self-advocates for services related to Intellectual Disabilities or Autism. We would like to hear about the challenges this group faces with the current waivers and get input on how the proposed Lifespan Waiver could offer resources to improve this experience.
We will include a brief high-level review of the Lifespan Waiver design and updates based on feedback from the Concept Paper comment period and the Fall 2023 presentations. Please use the link below to register for the Zoom session.
Wednesday, December 13, 2023, from 1:00 AM to 2:30 PM. Zoom Registration:
https://mainestate.zoom.us/meeting/register/tZIod-uhqjkpG9Jzhtfp_LXY1wv3CfrRK2Sj
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].
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs - No update
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: We are doing a lot around youth advocacy (ages 14 to 25). DRM has a new Youth Self-Advocacy Project – and we
We are hosting a Youth Self-Advocacy Group. It is for 14 to 25-year-olds with intellectual/developmental disabilities. In this group, the aim is to have fun together, make friends, and learn skills for speaking up. We continue to have weekly Youth Self-Advocate Virtual Info Sessions that anyone can join on Wednesdays at 10:30am. We have also been doing a lot of work on voting access. Anecdotally it appears that voting appears to be more accessible, which is great.
Cullen: Thank you for being here, and for these updates, Lucas!
LD 924 Task Force Update: - No update
Federal & Housing Updates:
Cullen:
State Legislature Update –
Cullen: We’re in between sessions, so this is an excellent time to reach out to your legislators and educate them about what you’re encountering, offering your expertise, and helping them understand the needs of people with ID/DD, so that they can make good decisions. Sharing your personal stories is very effective, and we’re all better for it. Thank you for raising your voice!
There are a number of carry-over bills that will be considered in the Second Session of the 131st Legislature. Many of these have already had public hearings and as such will not receive additional public hearings. The list of bills submitted for consideration as emergency legislation in the Second Session has been posted on the Legislature’s website. As has the list of Department bills. In order to be considered in the Second Session, bills have to pass the Legislative Council, and decisions have been made for this session.
From previous meetings: Laura Cordes – Maine Association for Community Service Providers (MACSP): Over the past few years, I’ve built a Google doc to support the MCHQS' interest in monitoring and engaging in bills of interest in the 131st Legislature. The doc contains an updated list of bills of interest, links on how to testify in person, by zoom, and/or how to submit testimony, as well as a list of Committee members (click here for more information). The Second Session is the “Short Session” and only emergency bills, Governor’s bills, and bills carried over from the previous session will be heard. All new bills must pass the Legislative Council in order to move forward.
Other Business: None.
The next meeting will be on Monday, January 8, 2024, 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 2024 the October and November meetings will be the 3rd Monday due to the holidays)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Jen Greslick, Program Manager, Integrated Studies, Saint Joseph’s College of Maine. www.sjcme.edu/integrated-studies-program Topic: Integrated Studies Program.
Cullen: I am pleased to welcome Jen Greslick, Program Manager, Integrated Studies at Saint Joseph’s College of Maine presenting on the Integrated Studies Program. Thank you for being here, Jen!
Jen Greslick: Thank you for having me!
Begin presentation (Click here for the presentation).
Jen: I started working at St. Joseph’s College about five years ago. The campus is beautiful, and it is small. All of the classes are in one centralized building (except science labs are held in another building) and the campus is very easy to navigate due to its size. This is helpful for an inclusive, immersive post-secondary education experience. We’re finishing the first semester of our pilot year of this program – we had one student enroll for the fall and she did wonderfully.
Information on the Integrated Studies (IS) Program at Saint Joseph’s College of Maine (additional information, including admissions criteria, core curriculum, concentration areas, and internships is available in the presentation and on the website):
The Integrated Studies (IS) Program at Saint Joseph’s College of Maine launched a one-year pilot program beginning in the fall of 2023. The program aims to meet students where they are on their academic journey. The IS Program is a non-credit certificate created as an alternative pathway for students with intellectual disability. Students who are at least 18 years old and have completed their secondary schooling by earning a high school diploma and/or certificate are eligible to apply. The IS Program is a fully inclusive experiential learning opportunity at the postsecondary level. The long-term goal is to develop the Integrated Studies Program into a two or four-year non-credit certificate program.
Students with intellectual disability who are enrolled in Saint Joseph’s IS Program will progressively develop skills each semester. Skill development will be achieved through academic exploration, meaningful employment opportunities on and off campus, and the development of effective communication skills. Additionally, students will develop their ability to live independently on campus and enhance their technological skills. The long-term goals of the IS program include increasing students’ independence both academically and personally, expanding their employment experience through meaningful community employment opportunities, and exploring the potential of deepening their own self-awareness.
Students enrolled in the program work collaboratively with their peer partners, academic advisor, program staff, as well as professional support both on and off campus to establish a person-centered academic path. The student-centered plan includes auditing courses, participating in internships, developing individual interests, and establishing future employment goals. At the end of a student’s experience, they will earn a non-credit certificate in Integrated Studies. As part of their academic experience, students will develop a portfolio which will be a culmination of their highlighted work. Additionally, they will leave SJC with a college transcript outlining their academic courses and internship experiences.
During their enrollment at SJC, students in the IS Program will have the support to fully embrace the college experience. They will have meals with peers in Pearson’s Café, actively engage in clubs/activities based on their interests, and gain independence by participating in our Resident Living experience.
Jen: Students enrolled in the IS Program complete learning agreements for audited classes. Students work towards their individualized learning goals – setting achievable goals and creating action steps to achieve them. The goals include soft skills needed to be successful in an employment environment.
Cullen: Thank you, Jen, this appears to be a wonderful program that offers true inclusion!
Discussion:
-A self-advocate asked if the student needs to have an SAT score for admission and if SJC is an accredited college.
Jen: No, the SAT is not required. SJC is an accredited college. The Program itself is not yet as three years of data is required. However, we designed the program to meet accreditation requirements so we’re hoping as soon as we’re able to apply for accreditation for this program we’ll receive it.
- It was asked if the program counts towards an actual degree.
Jen: Because the curriculum is modified credits are not earned. If it’s found the student can do the coursework without modification, then yes. If this is the case for students, perhaps they just needed a semester under their belt, we would transfer them out of the program and into a degree program.
-It was asked if a young person who may be funded under a waiver can reside on campus and maintain waiver funding.
Jen: We’ve had conversations on this subject with OADS, but I don’t have an answer. Sections 21 and 29 can’t be used for the tuition piece of this program. There are three categories of costs – tuition (modified from the standard SJC tuition), the program support fee which could potentially be covered by waiver fees in the future, and the room and board fee.
-It was asked if the “grading” is consistent and explained to the student or if this is still being worked out.
Jen: It’s still in development. Each Department at the college is slightly different. We want to be cognizant of what Departments are already doing. We’re having those conversations individually with the student and the Professor – “a 1 in this class means this”. This is easy with one student. That’s obviously not sustainable with ten to fifteen students. But we are working towards consistency globally within the program.
-It was asked if SJC can support someone who is physically disabled.
Jen: Again, this is very individualized. We do have students on campus with disabilities, including students in wheelchairs. Some people may have needs that are too significant for SJC to meet. A modification for this could be not living on campus if someone lives within commuting distance.
-It was asked if the Certificate of Completion will be helpful for students in attaining employment after program completion.
Jen: My understanding is that this is perceived as similar to graduate-level certificates in the community. We still need to raise awareness of the program within the business community. The student will also be able to provide a portfolio of work, a transcript stating which classes were audited, a resume including internships, etc., and access to the SJC career office.
-It was stated that this was a great presentation and offers so much hope. It was asked if the school provides ASL interpreters.
Jen: That’s a very good question! We haven’t had that need arise in the time that I’ve been here, so I don’t know. As this would be needed by a student, I would imagine it would be an accommodation provided for anyone who may need it – separate from my office.
Jen: We’ve been working with various groups and put forward legislation in this Legislative Session (LR 2791) to have funding for colleges to have pilot programs and funding for students to participate in them. We’re also building a State of Maine Alliance with Think College. All in the hopes of expanding inclusive, integrated options for students.
Cullen: Thank you for your work on this and for pioneering this program in Maine, this is wonderful!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speaker: Laura Sarnie, MPH, Clinical Research Coordinator, and Robyn Thom, MD, Psychiatrist and Co-Director, MGH Williams Syndrome Program, Massachusetts General Hospital Lurie Center for Autism. rally.massgeneralbrigham.org/study/down_syndrome_depression Topic: Depression and Down syndrome study.
Cullen: Today we also have Laura Sarnie, MPH, Clinical Research Coordinator, and Robyn Thom, MD, Psychiatrist and Co-Director, MGH Williams Syndrome Program, with the Massachusetts General Hospital Lurie Center for Autism presenting on their Depression and Down syndrome study. There’s room for people to participate in this, which could open up opportunities for people from Maine. The study has very promising results so far and I’m thrilled to have Laura and Robyn here. Thank you both for presenting today!
Dr. Robyn Thom: Thank you for having us!
Begin presentation (Click here for the presentation).
Robyn: Adults with Down syndrome have a four-to-five times increased risk of developing depression compared to the general population. Despite this, no studies on the use of modern antidepressants in people who have Down syndrome have been published. The information that we do have on how antidepressants work in the general population may not be applicable to people with Down syndrome.
We did a 12-week retrospective study with 11 adults with Down syndrome. Based on the data from this study we thought it would be advantageous to do an actual trial, which Laura will speak about. Before that, I wanted to talk a little about Dementia vs depression. If it’s a younger person under 40 it’s much more likely it’s depression. For people with cognitive decline, if depressive symptoms accompany or precede the cognitive decline it’s likely depression.
Laura Sarnie: The Massachusetts General Hospital at the Lurie Center is recruiting for a new clinical trial that will evaluate the effectiveness and safety of the treatment of depression in adults with Down syndrome. We are studying how to treat depression in adults with Down syndrome. Specifically, we are investigating whether a medication (fluoxetine) that is commonly used to treat depression in the general population is helpful and safe for adults with Down syndrome. Individuals between the ages of 18 and 45 years who have Down syndrome and depression symptoms can participate in the study. For study participants, the first visit would be in-person at the Lurie Center in Lexington, MA, for an initial evaluation where we will gather a developmental, medical, and psychiatric history, conduct a mental status exam, take vital signs, and prescribe the drug fluoxetine for participants who meet eligibility criteria for the study. Fluoxetine will be prescribed to the participants' local pharmacy. After that, there would be brief, biweekly follow-up visits over a four-month period via Zoom/telephone.
Discussion:
-A self-advocate asked if this is treating chronic depression or acute.
Robyn: The study treats both. Depression is so often missed and under-diagnosed in individuals with Down syndrome people often have had symptoms for a long period of time.
-It was asked if they had found any information regarding the suicide rate for people with cognitive disabilities.
Robyn: I don’t believe we have specific data on suicide rates for adults with ID/DD. We have unpublished research on the rates of suicidal ideation for adults with autism. The results are staggering – adults with autism have had thoughts of suicide at least once in their lives.
-It was asked what the therapeutic accommodations are in addition to the medication.
Robyn: Generally speaking, the most evidenced-based treatment is cognitive behavioral therapy. People get the best results when this is combined with antidepressant medication. Therapeutic approaches always need to be modified/adapted for this population. We have seen these modifications for the treatment of anxiety but unfortunately, I’m not aware of anything like this for depression at this point in time.
-It was asked when the results of the clinical trial would be available and where they would appear.
Robyn: That’s a great question. Our study will continue to work with research participants through the end of the summer. After that, you wouldn’t believe how long it takes to clean data, analyze it, and draft a report. Best case scenario that process can take one to two years. At that point in time, we’ll send it out to journals that may be interested in publishing it.
Cullen: We’d love to have you back in the future to discuss the results of this important study!
-It was stated that dementia can come with symptoms of depression as well. It was asked if it could be the case where someone has both depression and dementia.
Robyn: For our clinical trial, if someone has a known, documented diagnosis of dementia they would not be permitted into the trial. If it’s not clear if it’s depression or dementia we would invite them in, see if it’s depression and if it is, or if it’s not clear we would proceed.
-It was stated that doses are often standardized. It was asked if the dosage is the same for a person with Down syndrome.
Robyn: In the paper we published previously, we learned that generally much smaller doses work much better for adults with Down syndrome. The average most effective dose is 15mgs per day for adults with Down syndrome and depression, while the standard typical starting dose for an adult is 20mgs. The trial includes flexible dosing – we start smaller and increase as needed/desired.
-It was stated that this is great to hear.
Cullen: Thank you both, it was excellent to have you both here. This Coalition exists to be an information clearing house for some 4000 people, but also because people here really believe we should have community inclusion for everyone. Your work here reminds me of how our medical field seems to have missed this population with research and studies. This means we’re missing key information on how dosages work for this population. Thank you for pioneering this research and working to see that the playing field is level for people with ID/DD in need of medical care/intervention. You’re on the cutting edge of helping people heal and be well. 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 - No update
Derek Fales: Betsy couldn’t join you all today so I’m here to provide updates for OADS. Following attending the WheelPad presentation at this meeting, we started our WheelPad initiative and received approval from CMS to purchase 10 WheelPad units. We also have approval from CMS for the Provider Readiness Grant Initiative as part of the Lifespan Project. This will be administered through the National Disability Institute. These grants would help providers achieve goals related to the Lifespan waiver. Rate surveys should be going out to providers very soon regarding Sections 21 and 29. This will collect cost data which will help inform the rate models for Sections 21 and 29 and will be the basis for the Lifespan rate development.
Cullen: Thank you for being here and for this information, Derek! It’s wonderful to hear about the WheelPad initiative!
-A self-advocate stated that the WheelPad initiative could open up housing arrangements and that this is great news.
RJ Adler, WheelPad: I talk to a lot of different states and people, and this is the first time where I saw real movement from the Federal government on something innovative. It’s very cool, but I’d like to pass the congratulations on to Derek!
Bonnie-Jean Brooks: This is just one example of why this Coalition is so important! On an unrelated note, I received an email from someone saying she’s working with OADS on an initiative I had never heard about regarding quality for day and community services.
Derek: Lisa Sturtevant had sent a number of emails to providers and stakeholders – we have ARPA (American Rescue Plan Act) funds to create a quality management structure and plan for Maine around meaningful day and community supports. They’re working with us on the HCBS Settings Rule and establishing quality benchmarks for day and community services.
-A self-advocate asked how the decisions about the WheelPad units will be made and if it will include self-advocates.
Derek: When we think about those policy decisions, internally we have to think about ADUs and issues that could surround them (zoning, ordinances, legal issues, etc.), then we think about who the right people are to make these decisions. However, there will definitely be work with stakeholders on this.
-It was suggested that the Department bring the SIS-A as an option to Section 21, versus just using it for Lifespan.
Derek: That’s great feedback that I’ll bring back to the team. The SIS-A is the tool we’re asking Members to take voluntarily. This isn’t a tool that will tell you what services you’re eligible for or how to enroll in Lifespan. It’s really a tool that if someone is looking at shared living or residential supports, the SIS-A would ensure there’s a tiered payment structure within that service, so the provider has a way to deliver services specific to people’s needs. This is about how you look at those services where there may be needs that require a different level of support, and how we can pay for that.
-It was asked if the waivers would be able to house someone with ID/DD and a physical disability in the new apartment development in the Downs at Scarborough.
Cullen: What I do know about this is that the entire building is designed for people with disabilities. I will note that all Low-Income Housing Tax Credit (LIHTC) buildings, which this is, must be set up to have a dedicated percentage of units that are handicapped accessible.
Derek: We are having discussions about waiver members having access to those units. There will be more information coming out regarding who’s eligible for that housing opportunity.
More information from OADS:
For up to date information on the work that is going on regarding the Lifespan Project, you can go to our website: HCBS Lifespan Project | Department of Health and Human Services (maine.gov)
-Community Resource Coordinator Recruiting – The Office of Aging and Disability Services (OADS) is piloting an enhanced case management role for the newly proposed Lifespan waiver. We are seeking an experienced leader with case management and supervision experience to help OADS build a new team of Community Resource Coordinators to support individuals with IDD/ASD in their community. Click here for more information.
-Proposed HCBS Lifespan Waiver: Stakeholder Informational and Listening Session for Self-Advocates – Please join the Office of Aging and Disability Services as we host an informational listening session. This session is focused on individuals who are self-advocates for services related to Intellectual Disabilities or Autism. We would like to hear about the challenges this group faces with the current waivers and get input on how the proposed Lifespan Waiver could offer resources to improve this experience.
We will include a brief high-level review of the Lifespan Waiver design and updates based on feedback from the Concept Paper comment period and the Fall 2023 presentations. Please use the link below to register for the Zoom session.
Wednesday, December 13, 2023, from 1:00 AM to 2:30 PM. Zoom Registration:
https://mainestate.zoom.us/meeting/register/tZIod-uhqjkpG9Jzhtfp_LXY1wv3CfrRK2Sj
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].
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs - No update
DOL – Division of Vocational Rehabilitation (VR) - www.maine.gov/rehab/dvr - No update
Office of Special Services and Inclusive Education (OSSIE) - www.maine.gov/doe/learning/specialed - No update
Disability Rights Maine (DRM) Update:
Lucas Cuellar: We are doing a lot around youth advocacy (ages 14 to 25). DRM has a new Youth Self-Advocacy Project – and we
We are hosting a Youth Self-Advocacy Group. It is for 14 to 25-year-olds with intellectual/developmental disabilities. In this group, the aim is to have fun together, make friends, and learn skills for speaking up. We continue to have weekly Youth Self-Advocate Virtual Info Sessions that anyone can join on Wednesdays at 10:30am. We have also been doing a lot of work on voting access. Anecdotally it appears that voting appears to be more accessible, which is great.
Cullen: Thank you for being here, and for these updates, Lucas!
LD 924 Task Force Update: - No update
Federal & Housing Updates:
Cullen:
- End of the Year Tax Bill – Congressional leaders are working quickly to reach a bipartisan agreement before the end of the year to expand the Child Tax Credit and revive several expired business tax incentives. If a deal is reached, the tax package could also include resources to expand and reform the Low-Income Housing Tax Credit (LIHTC).
- FY 24 Budget – Congress passed, and the President signed a two-step continuing resolution (CR) bill extending appropriations dealing with veteran’s programs, transportation, housing, agriculture, and energy until 1/19/24. Funding for eight other appropriations bills, including defense, would be extended until 2/2/24. This is intended to give Congress more time to reach a final agreement on FY 24 spending bills.
- Senate FY 24 T HUD Appropriation Bill: On 7/20 the Senate T-HUD Appropriations Committee released its FY 24 spending bill. Overall, the bill provides $70.06 billion for HUD’s affordable housing, homelessness, and community development programs, an increase of $8.26 billion (or slightly more than 13%) over FY23-enacted levels. However, HUD needs to increase funding by approximately $13 billion just to maintain existing levels of assistance. Though, the Senate draft proposes $1.86 billion more in funding for HUD’s vital affordable housing and homelessness programs than the draft spending bill released by the U.S. House of Representatives on 7/11. The Senate THUD bill provides increased funding for key HUD programs, particularly those vital to getting or keeping people with the lowest incomes housed.
- House FY 24 Appropriation Bills (including HUD): The House is scheduled to vote soon on its FY24 THUD spending bill. The bill proposes funding HUD at $68.2 billion, a $6.4 billion (or roughly 10%) increase to HUD programs over previously enacted levels. HUD needs an approximately $13 billion increase in funding over current levels just to maintain existing assistance. The spending bill proposes deep cuts to or even elimination of some HUD programs but appears to adequately fund most rental assistance programs.
- S 570, Medicaid Dental Benefit Act of 2023 – Introduced by Senator Cardin, this bill requires state Medicaid programs to cover dental and oral health services for adults. It also increases the Federal Medical Assistance Percentage (i.e., federal matching rate) for such services. The Centers for Medicare & Medicaid Services (CMS) must develop oral health quality and equity measures and conduct outreach relating to such coverage. Additionally, the Medicaid and Children's Health Insurance Program (CHIP) Payment and Access Commission must report on specified information relating to adult oral health care.
- S 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.
- 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.
State Legislature Update –
Cullen: We’re in between sessions, so this is an excellent time to reach out to your legislators and educate them about what you’re encountering, offering your expertise, and helping them understand the needs of people with ID/DD, so that they can make good decisions. Sharing your personal stories is very effective, and we’re all better for it. Thank you for raising your voice!
There are a number of carry-over bills that will be considered in the Second Session of the 131st Legislature. Many of these have already had public hearings and as such will not receive additional public hearings. The list of bills submitted for consideration as emergency legislation in the Second Session has been posted on the Legislature’s website. As has the list of Department bills. In order to be considered in the Second Session, bills have to pass the Legislative Council, and decisions have been made for this session.
From previous meetings: Laura Cordes – Maine Association for Community Service Providers (MACSP): Over the past few years, I’ve built a Google doc to support the MCHQS' interest in monitoring and engaging in bills of interest in the 131st Legislature. The doc contains an updated list of bills of interest, links on how to testify in person, by zoom, and/or how to submit testimony, as well as a list of Committee members (click here for more information). The Second Session is the “Short Session” and only emergency bills, Governor’s bills, and bills carried over from the previous session will be heard. All new bills must pass the Legislative Council in order to move forward.
Other Business: None.
The next meeting will be on Monday, January 8, 2024, 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 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].