September 14, 2020
Minutes
Minutes
Attendees via Zoom: Abby Silsby, Alli Vercoe, Annmarie Mayberry, Andy Taranko, Ben, Beth Morse, Betsy Hopkins, Betsy Mohoney, Betsy Morrison, Bonnie Robinson, Brenda Smith, Bryan Gorgon, Cathy Dionne, Chris DeFeo, Christine Walker, Christopher Call, Cindy, Craig Patterson, David Cowing, Debbie Dionne, Diane Boas, Ed & Suellen Doggett, Emily M, Helen Hemminger, Holly Randall, J Richardson Collins, Jamie Whitehouse, Janet Hamel, Julie Brennan, Kathy Adams, Kim Humphrey, Kristin McPherson, Laura Cordes, Lorraine DeFreitas, Maggie Hoffman, Mark Kemmerle, Mary Chris Semrow, Megan Salvin, Natalie Childs, Pamela Bird, Paula Bush, Paula Schrank, Robin Levesque, Ryan Gallant, Sharlene Adams, Staci Converse, Stacy Lamontagne, Teague Morris, Teresa Barrows, Vickey Rand, Cullen Ryan, and a few callers who did not identify themselves.
Cullen Ryan introduced himself and welcomed the group. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted (it was noted there were a few typos, which will be corrected).
Featured Speaker: Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. www.maine.gov/dhhs/oads Topic: OADS Update and related discussion.
Cullen: Today we have Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services with OADS to continue the Department’s transparency by sharing information and providing an update on what’s going on at OADS. Thank you for being here Betsy!
Betsy Hopkins: Thank you for having me. I am going to give just a few COVID-19 updates and ask if you have any questions, and then talk about some other work we’re trying to move forward.
(Click here for the presentation)
-It was asked if all of the people who have recovered from COVID-19 are included in the recovered data.
Betsy: That’s a great question. The number who have recovered is higher, but what we’ve been able to capture fully is in the data. Regarding outbreaks, people who have recovered aren’t counted in the data until everyone associated with the outbreak has recovered. We only have one outbreak in an agency that’s still ongoing. So, the recovered data includes most of the people except for that one agency.
Betsy: We were able to engage in some technical assistance through the Medicaid IAP (Innovation Accelerator Program) to create a Value-Based Payment strategy regarding employment. We started the work by developing an “aim statement,” what we’re aiming to achieve. The aim statement is very robust, which was intentional: “Seventy-five percent (75% ) of transition age (18 to 21-year-old) waiver-eligible citizens will be on a pathway to be employed at least 20 hours a week in jobs paying at least minimum wage and with comparable benefits when they enter HCBS waiver services upon graduation from school.” We will be talking about this work, this aim statement, as part of our reform work as well. I’m engaging in this work in collaboration with Lisa Sturtevant (Employment Services Coordinator for OADS), and two staff from Office of MaineCare Services. We also have people helping to provide technical assistance. Developing the aim statement took a few meetings, and we incorporated feedback we had already received from stakeholders, specifically the numerous comments we had received about really wanting to improve outcomes for people transitioning to adult services. We wanted employment to be considered and really be an option for people ages 18 to 25 years old. This is often a group of individuals who gets lost when we’re discussing employment.
We hear from individuals, from youth especially, that they get to 17 years old and no one has really discussed employment with them, or that they didn’t have the opportunity to try employment while they were still in high school. So, we really want to talk about and establish those expectations earlier. Maine DOL (Department of Labor) has a number of programs that help people with employment, including Voc Rehab, and we want to ensure we’re connected to and using those services as well as the services we’re providing through OADS.
We also know that the PCP (Person-Centered Planning) process and manual are both outdated, and definitely not up-to-date date with meeting the HCBS (Home and Community-Based Services) Settings Rule. That work is underway now and we’ll be continuing to engage with stakeholders around that.
We’ve discussed a Maine-specific lifespan waiver with this group, and that continues to be part of our planning, with this Value-Based Payment strategy for employment as well as our long-term systems change work. We want a system that meets people where they are and provides the services and supports individually according to where people are, recognizing that people’s wants, and needs are very different at age 18 versus age 40.
-It was asked if this project could reinvigorate and reinvent the regional Transition Councils to work closely with high school students and families, stakeholders etc.
Betsy: Could you provide more information on this?
-It was stated that there used to be regional transition councils across the state. The only surviving one is in southern Maine (the Southern Maine Advisory Council on Transition or SMACT). These were great ways in which transition work moved forward. SMACT meets monthly during the school year and is a great source of information.
Betsy Morrison: I was the regional director of one of the regional transition councils, the one still in existence in southern Maine. SMACT continues, but it is now entirely volunteer-based. Originally, it was primarily funded through the Department of Education. We did have a federal grant as well. It was all about improving transition outcomes for anyone on an IEP. There were six regional councils, all of which provided technical assistance and information to anyone needing it. It was wonderful to have an objective entity to help people walk through the process and help improve transition outcomes.
Betsy: That’s good to know. We will be discussing our reform work more. It sounds like these were very beneficial with transition so it’s something into which we could look.
-A parent stated that she still attends the SMACT meetings. They have been invaluable; they were especially invaluable early on when her daughter was younger. There was discussion and comments regarding how helpful the transition councils were.
-A parent stated some of the system changes, such as the changes to the probate code regarding guardianship, seem to be one-size fits all, and it would be a shame to have things blanketly ruled out. It was stated that keeping an open mind for the full spectrum of capabilities is needed.
Betsy: You speak to the larger needs to the system, which is to look at people on an individual level – looking at where they are and raise expectations about where they can go. OADS needs to support that as much as possible, whether it’s funding, staff resources, support to family members, etc. I really appreciate your comments.
-A parent and former special educator spoke to his experience with looking at students and opportunities in the community or job opportunities. It seemed that for students with ID/DD, there was an immediate assumption that people would be slotted into something they would do for the rest of their lives. It’s easy to get locked into the assumption that someone is going to work at, for instance, McDonalds and that’s it. Perhaps people don’t want to work at McDonalds; perhaps there are other, bigger, different opportunities for them. It’s important to keep an open mind to avoid missed opportunities.
Betsy: I totally agree with you. How many of us have had numerous different types of jobs before we landed somewhere? When I talk about being open, I mean that our service has to be open to allowing that to happen for people.
-It was asked if there is any wording or leeway for older "retired" folks or folks with dangerous behaviors who cannot interface with the community safely for longer than a few minutes, even with a 3 to 1 staffing ratio.
Betsy: For this specific project we chose to focus on youth who are transitioning. In our larger reform work we’re following the Employment First law and that is definitely something that we would want to have in mind with that work. The purpose of this Value-Based Payment project is focusing on youth in part because our hope is that if we can work on some of those systems when a youth is still in school it will assist them as age. This doesn’t mean we won’t consider employment supports and outcomes for everyone we serve in our programs.
-It was asked if there will be a pathway for people who may be able to work a few hours but not as many as 20 as included in the aim statement.
Betsy: Of course, not everyone can work 20 hours. We wanted to have an aim statement that aims high. Our current data says that we have individuals with ID/DD working three to ten hours per week. Our information tells us that people want to work more, but there isn’t opportunity for a variety of reasons. That’s why we have 20 hours as the aim in the driver diagram.
-It was stated that transportation to work ought to be supported even if people do not receive paid work supports. The ability to work without support is a great goal.
Betsy: Yes, I agree. We know that this is a very real need. When we talk about incentivizing employment and aligning programs and processes that’s something we’re really trying to adjust.
-It was stated that micro employment provides boosts to confidence, competence, and community inclusion. We don’t know the limits of people once they receive opportunities, as what may seem impossible isn’t always the case. Sometimes starting small is the way to discover potential, but even if it doesn’t lead to that, providing opportunity for everyone is worthwhile.
Betsy: Yes, we have a number of people around the state who have their own small businesses which we support, so that’s an option for people. It doesn’t have to be the traditional career path; we can talk about anything that will work for individuals around employment work. And yes, starting small is important.
-It was stated that removing the “firewall” that prevents day hab and residential services from helping individuals reach employment goals would be advantageous. It was stated that currently services are too compartmentalized.
Betsy: We’re looking at a lot of different things around employment. We’ve heard that people would love to have dual roles. It’s something we’re considering and something to which we are open.
-It was stated that having services be siloed feels restrictive. As people get ready for their day, go out to work, eat a meal, take a walk, go shopping for groceries, etc. support staff should be freed up to move seamlessly between activities to build on that. A family member stated that her loved one got to go to a job at a retailer, but he only worked four to five hours a week.
Betsy: Those are the types of examples and feedback that we’re looking for as we move forward with this work.
Betsy: I also wanted to mention that we submitted our report to the Legislature pursuant to LD 1486: Study of Services for Persons with Intellectual Disabilities or Autism and Adequacy of MaineCare Reimbursement, in Relation to Challenging Behavior (click here for the full report). Jane Gallivan worked with us on this report. The report found that the rate structure is not conducive to effectively delivering support services, specifically people with behavioral health needs. The Department is recommending a Value-Based Payment strategy as a support intervention for people with challenging behaviors.
-A parent stated that this is very much needed. Providing behavioral supports needed for people with ID/DD with challenging behaviors requires a great deal of training and requires additional support. Working with local colleges would be advantageous for this training and support as well.
Laura Cordes – MACSP (Maine Association for Community Service Providers): I appreciate you mentioning the report and I want to thank the Department for all of its work on it. Is there anything you can say in terms of the next steps for the Department? We can’t support folks the way we need to in Maine, we’re sending people out of state, and this isn’t good for anyone.
Betsy: We’re looking at tiers of credentials; we’re starting those conversations. As we move forward, we will seek input from stakeholders. We got derailed a little with COVID, but we are working with our partners. We’re also looking at the rates piece, which we know is critical.
Betsy: It seems like a long time ago now, but I previously came to this group to talk about our reform work. I wanted to let people know that we’re very excited to begin this work, move it forward, and come up with a plan to address the gaps in our service system. I’m happy to come and give updates and seek feedback on a regular basis moving forward.
-A parent stated that finding employers open to hiring people with ID/DD has been difficult and a source of great frustration. She stated that some kind of public service announcement and/or greater efforts to get employers interested would be helpful. This is work that Lisa Sturtevant does, but more would also be helpful. This is such a large part of people being able to be part of their communities.
Betsy: You bring up a great point. The driver diagram talks about the supply side but not the demand side, which consists of employers. When we talk about raising expectations and a targeted educational campaign, we’re talking about employers too, informing them of this untapped workforce, etc. And, it may not be a traditional employer/employee model. We’re open to different models and thinking about a broad-spectrum regarding employment.
Cullen: This might come off as controversial, but I did want to mention the barrier of minimum wage payments and that sometimes the benefits people receive from employment would be gained with volunteer experience as well. Being connected to the workforce, doing work that people are proud of, being connected to other employees, having a sense of purpose, all of those things transcend the reimbursement aspect of it. I wonder if there could be a parallel process for volunteer opportunities. So instead of just looking at folks who are looking to be gainfully employed and those who are not, there could be a range of opportunities. People have worked hard for parity and payment, and I appreciate that and would never want to diminish that as it’s vitally important. However, it’s important to keep in mind the aspects of employment that transcend the financial part of it.
Betsy: When we think about the community membership reform group as part of the larger system reform, we’re talking about all aspects of community not just employment. Being employed is a huge connection to people’s communities, but it’s not the only one. There will definitely be opportunities to discuss volunteering and other aspects of being part of the community. Though, we have to be careful that people aren’t doing work that someone else is getting paid for and calling it volunteering. We have run into that. But if it’s something that helps people feel connected to their communities it definitely needs to be supported.
-A parent seconded the idea of volunteering. It’s a spectrum. Life after school years is about quality of life. The umbrella under which everything falls should be quality of life – what kind of meaning can we create so people can blossom? That is key. Another parent stated that her daughter worked for more than two decades and many of those jobs involved cleaning offices etc. However, her daughter also did a lot of volunteer work as well. The expanse of paid opportunities available to her daughter are very limited, but the opportunities to do meaningful work and contribute to her community are interesting and she learns more, and she connects more with people. For a lifetime career she wants more for her daughter than cleaning toilets. People can do a greater variety of things for their community if their employer isn’t required to pay them.
Betsy: We can certainly discuss expanding opportunities for volunteering, especially if it helps with connections in the community and self-esteem and confidence building. We’re not trying to say one is better than the other. Being included in people’s communities is important and how people do that varies.
-A parent stated that a paycheck means very little to her daughter at her job. She likes to dress up and be a "working woman" and be productive. She stated that she works at Maine Medical Center Voc rehab as a second job and one thing they are really focusing on is meaningful employment – not just getting people jobs but real career outlooks.
-A parent stated that years ago her son had a great offer for a volunteer opportunity, which he wasn’t able to do because of that rule about not having volunteers do work for which other staff would be paid. Without the opportunity to volunteer and learn he never would have been able to get that job. If there could be pathways around that, it could help people who need a lot of training to accomplish things but could eventually get there with training acquired through volunteering etc.
Betsy: You bring up a great point. A lot of the folks we’re talking about may not necessarily be able to move into a paid job right after high school. That’s why we’re doing this in conjunction with our partners in DOL, who have supported services for folks including on-the-job training. It’s about using all of our services together, not siloed. And a lot of people don’t know what’s out there for options – that’s something we definitely need to improve.
-It was stated that SUFU (Speaking Up For Us) is another way in which people can be included in their communities and begin to conceptualize employment and self-advocacy. This provides an opportunity to contribute from the civic side too.
Betsy: I want to echo what you’re saying about SUFU. We’ve worked with them quite a bit. They’ve helped us develop ideas and tools, especially now during COVID. They’ve really been doing some great work. I appreciate everyone’s questions and feedback. This is just the first conversation we’ll be having on many levels.
Cullen: I appreciate you taking the time to present this today, being transparent and sharing what your thoughts are, and engaging us in a dialogue with your plans so they can be enriched with inclusive input. Thank you for using this venue for that, I believe we’re all better for it!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: There aren’t really any other updates apart from what I presented. However, we’re still doing our stakeholder meetings every other week, which we will continue at least through September.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: I’ve mentioned a few times with this group that I have been asked to be the lead for our transition strategy. It’s a long-term project, but I want to give an update. We have met with Betsy and the Office of Behavioral Health and the Department of Education and developed a preliminary outline. The work is in progress, but I will definitely be bringing it to this group for input.
Cullen: Betsy’s presentation focused a lot on transition. And, as you know this group developed the Blueprint for Effective Transition, which contemplates the variety of transition’s throughout a person’s life, especially the transition from children’s services to the adult system. This group is very invested in bettering transition for people with ID/DD and I would love to invite you to present at next month’s Coalition meeting!
Teresa: We have put the Blueprint for Effective Transition in the forefront of all of this; it just made sense.
Cullen: It’s exciting to be talking about putting that to work and ensuring that continuity for people so that they can experience smooth transitions throughout the lifespan.
Teresa: It is a long-term project, but there are some aspects that could move quicker. Input from parents regarding what could have helped to make things easier would be advantageous. It seems no matter what has been tried in the past there’s always a gap, so we’re looking at what we can do to make that better.
SMACT (Southern Maine Advisory Council on Transition)
Kathy Adams: As we discussed earlier, SMACT meets monthly from October to May, on the first Friday of the month from 1pm-3pm. Right now, meetings are being held through Zoom. The next meeting is October 2nd, and we’re kicking things off with a presentation from DOE Special Education on transition. November’s meeting will feature Heather Shields, an Occupational Therapist who will be presenting on adaptive driving. SMACT also has a Facebook Page, where you can get up-to-date information.
Special Education:
-It was stated that there are a lot of concerns about how children in Special Education are being supported through remote learning. This is something people will continue to monitor.
Disability Rights Maine (DRM) Update:
Staci Converse: There are a number of resources and trainings about Special Education on our website. In addition to that, there’s a training on Reasonable Accommodations during COVID. This includes a very simple one-page “how to ask for a reasonable accommodation” form. It’s designed for COVID, but it’s applicable to any reasonable accommodation someone might need. We’ve had two clients successfully use it, so I encourage people to take a look at that. DRM partnered with OADS and SUFU to develop a “Person-Centered Discussion Tool for Assessing the Risks of Having Visitors and Accessing the Community”. This is a tool for people receiving services and the people supporting them to assist with making decisions about accessing the community. We’ve been hearing a lot more from people who are limited in their ability to go into the community and left out of those conversations. This presentation and guide are designed to assist with that. This was also presented nationally. If you know people experiencing that and would like some assistance with advocacy, please have them reach out to us. We continue to outreach people at home, right now primarily about voting and the census and any resources they might need. This week we have two voting 101 trainings, the first on Tuesday at 4 and the second on Friday at 7 via Zoom. We’re not posting Zoom information, but I’m happy to share that with you if you reach out: [email protected]. We still continue to do a lot around voting. We’ve been partnering with the local SUFU groups and if anyone wants a training, we’d be happy to arrange them. You can find additional upcoming trainings on our website (scroll down and events are listed at the bottom of the page on the right).
Federal & Housing Updates:
Cullen: On the federal level everything is on hold as we wait to see if Congress passes another stimulus package. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing stability. Congress is currently in negotiations on a fourth stimulus package. There have been competing proposals, the House’s Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act and the Senate’s Health, Economic Assistance, Liability Protection and Schools (HEALS) Act. There is a push from advocates across the country for stimulus funding to include robust funding for $100B of rental assistance, and a large investment in sorely needed affordable housing through the passage of the Affordable Housing Credit Improvement Act of 2019 (S 1703/HR 3077). However, Congress hasn’t been able to come to agreement. It appears that any additional stimulus funding may come after the election.
On 9/1 the White House and the CDC issued a national moratorium on most evictions for nonpayment of rent. This took effect on 9/4 and is in effect through December 31. It applies to covered tenants facing eviction for nonpayment of rent who present a signed declaration to their landlords that they meet certain income and hardship criteria. Additionally, the House passed a package of six spending bills, including T-HUD, for FY 21. This bill would provide a significant increase in funding for housing programs that serve low-income people and communities, and the bill includes two amendments which would block implementation of harmful HUD proposals. However, the Senate has not addressed a T-HUD bill for FY 21. It remains to be seen whether Congress will pass FY 21 funding bills or a continuing resolution in order to keep the government open beyond 9/30 when FY 20 funding ends.
State Legislature Update:
Cullen: Many of the Committees went back to finish work on bills hanging in the balance – many of which passed with large bipartisan majorities and were awaiting funding and/or amendment details and on the Special Appropriations Table when the Legislature adjourned. However, there’s no consensus among the parties to reconvene. Currently it seems unlikely there will be a Special Session, especially as the election gets closer. It remains up to the Governor to call the Legislature back, which she may not do.
Laura Cordes – MACSP (Maine Association for Community Service Providers): I’ll add that it’s highly unlikely that the Legislature will reconvene. MACSP put out an action alert asking people to contact Governor Mills requesting that she utilize CARES Act funds to keep direct support professionals (DSPs) on the frontlines caring for Mainers with ID/DD. As Governor Mills considers where to direct the last of the CARES Act funds, it’s important that she hears from all of us, people who understand the vital role that DSPs have in keeping vulnerable and high-risk Mainers safe through the pandemic. I want to thank folks who responded to the action alert. It would be wonderful if the Governor came through with that request during national DSP week, which just started. Earlier today the Governor released a statement regarding the previously predicted budget shortfall for this fiscal year. It appears that by using unspent funds from last year, CARES Act funding, and unexpected increased revenue from alcohol sales, that they will be able to balance the budget without using the Rainy-Day Fund. However, when the new Legislature convenes and they begin work on the next biennial budget, they will be looking at about $100 million in revenue losses.
Cullen: It’s welcome news that Departments won’t be looking at the 10% across-the-board cuts that the Governor had anticipated. Can you talk about bills of note that were on the Table when the Legislature adjourned?
Laura: The bill to eliminate the waitlists, the bill addressing the recommendations from the Long Term Care Workforce Commission, and the bill that would have provided a $2 per hour rate increase for DSPs were all in flux when the Legislature adjourned – and all had broad support. These bills will have to be reintroduced in the new Legislature.
Cullen: Would it help if people reached out to Legislators expressing their disappointment in having so many important bills left in limbo?
Laura: Sharing disappointment in the Legislature not reconvening can’t hurt, but it’s still highly unlikely to happen. It’s a good time for people to talk to candidates running for office though. Discuss the needs of people with ID/DD and start to build or deepen those relationships.
Cullen: In the past we’ve highlighted that when people in the Legislature hear from three or more people on an issue it helps to raise the alarm as to the issue’s importance. Now is the ideal time to reach out to candidates, tell your story and educate them on the issues that affect you and your family. If they hear from a lot of families, it will help impress upon them the importance of quality services and housing options for people with ID/DD and they will be better equipped to tackle it if/when elected.
Laura: With the pandemic, there are new opportunities and sometimes easier ways in which you can connect with candidates now that things are happening remotely online.
Other Business:
Helen Hemminger: There’s a lot of concern nationally regarding the Census. We were one of three states to start enumeration early. Maine is further along in the process and we went from 47th place to 6th in enumeration nationally. We’re concerned about the undercount of children in general. Unless the Administration decides to reverse its decision to end the Census count early, we have until September 30th to complete the Census. (Click here for information regarding service provider enumeration for the Census.)
Cullen: Thank you for this information Helen. The Census count being accurate is extremely important as it drives federal funding for Maine. Thank you for all of your work to ensure that Maine has an accurate count!
-It was stated that the differences between MaineCare, Medicare, Medicaid, and WellCare can be quite confusing. It was suggested that a future Coalition meeting topic provide information on these and how they pertain to people with ID/DD. It was stated that Legal Services for the Elderly may be a great resource for Medicare and MaineCare benefits information and how they interface together.
Announcements:
The next meeting will be on Monday, October 19, 2020, 12-2pm, via Zoom.
**Please note this is the third Monday of the month due to the holiday**
Featured Speaker: Teresa Barrows, CBHS Manager, Office of Child and Family Services-DHHS.
Topic: OCFS Update on Transition.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
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. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted (it was noted there were a few typos, which will be corrected).
Featured Speaker: Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. www.maine.gov/dhhs/oads Topic: OADS Update and related discussion.
Cullen: Today we have Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services with OADS to continue the Department’s transparency by sharing information and providing an update on what’s going on at OADS. Thank you for being here Betsy!
Betsy Hopkins: Thank you for having me. I am going to give just a few COVID-19 updates and ask if you have any questions, and then talk about some other work we’re trying to move forward.
(Click here for the presentation)
-It was asked if all of the people who have recovered from COVID-19 are included in the recovered data.
Betsy: That’s a great question. The number who have recovered is higher, but what we’ve been able to capture fully is in the data. Regarding outbreaks, people who have recovered aren’t counted in the data until everyone associated with the outbreak has recovered. We only have one outbreak in an agency that’s still ongoing. So, the recovered data includes most of the people except for that one agency.
Betsy: We were able to engage in some technical assistance through the Medicaid IAP (Innovation Accelerator Program) to create a Value-Based Payment strategy regarding employment. We started the work by developing an “aim statement,” what we’re aiming to achieve. The aim statement is very robust, which was intentional: “Seventy-five percent (75% ) of transition age (18 to 21-year-old) waiver-eligible citizens will be on a pathway to be employed at least 20 hours a week in jobs paying at least minimum wage and with comparable benefits when they enter HCBS waiver services upon graduation from school.” We will be talking about this work, this aim statement, as part of our reform work as well. I’m engaging in this work in collaboration with Lisa Sturtevant (Employment Services Coordinator for OADS), and two staff from Office of MaineCare Services. We also have people helping to provide technical assistance. Developing the aim statement took a few meetings, and we incorporated feedback we had already received from stakeholders, specifically the numerous comments we had received about really wanting to improve outcomes for people transitioning to adult services. We wanted employment to be considered and really be an option for people ages 18 to 25 years old. This is often a group of individuals who gets lost when we’re discussing employment.
We hear from individuals, from youth especially, that they get to 17 years old and no one has really discussed employment with them, or that they didn’t have the opportunity to try employment while they were still in high school. So, we really want to talk about and establish those expectations earlier. Maine DOL (Department of Labor) has a number of programs that help people with employment, including Voc Rehab, and we want to ensure we’re connected to and using those services as well as the services we’re providing through OADS.
We also know that the PCP (Person-Centered Planning) process and manual are both outdated, and definitely not up-to-date date with meeting the HCBS (Home and Community-Based Services) Settings Rule. That work is underway now and we’ll be continuing to engage with stakeholders around that.
We’ve discussed a Maine-specific lifespan waiver with this group, and that continues to be part of our planning, with this Value-Based Payment strategy for employment as well as our long-term systems change work. We want a system that meets people where they are and provides the services and supports individually according to where people are, recognizing that people’s wants, and needs are very different at age 18 versus age 40.
-It was asked if this project could reinvigorate and reinvent the regional Transition Councils to work closely with high school students and families, stakeholders etc.
Betsy: Could you provide more information on this?
-It was stated that there used to be regional transition councils across the state. The only surviving one is in southern Maine (the Southern Maine Advisory Council on Transition or SMACT). These were great ways in which transition work moved forward. SMACT meets monthly during the school year and is a great source of information.
Betsy Morrison: I was the regional director of one of the regional transition councils, the one still in existence in southern Maine. SMACT continues, but it is now entirely volunteer-based. Originally, it was primarily funded through the Department of Education. We did have a federal grant as well. It was all about improving transition outcomes for anyone on an IEP. There were six regional councils, all of which provided technical assistance and information to anyone needing it. It was wonderful to have an objective entity to help people walk through the process and help improve transition outcomes.
Betsy: That’s good to know. We will be discussing our reform work more. It sounds like these were very beneficial with transition so it’s something into which we could look.
-A parent stated that she still attends the SMACT meetings. They have been invaluable; they were especially invaluable early on when her daughter was younger. There was discussion and comments regarding how helpful the transition councils were.
-A parent stated some of the system changes, such as the changes to the probate code regarding guardianship, seem to be one-size fits all, and it would be a shame to have things blanketly ruled out. It was stated that keeping an open mind for the full spectrum of capabilities is needed.
Betsy: You speak to the larger needs to the system, which is to look at people on an individual level – looking at where they are and raise expectations about where they can go. OADS needs to support that as much as possible, whether it’s funding, staff resources, support to family members, etc. I really appreciate your comments.
-A parent and former special educator spoke to his experience with looking at students and opportunities in the community or job opportunities. It seemed that for students with ID/DD, there was an immediate assumption that people would be slotted into something they would do for the rest of their lives. It’s easy to get locked into the assumption that someone is going to work at, for instance, McDonalds and that’s it. Perhaps people don’t want to work at McDonalds; perhaps there are other, bigger, different opportunities for them. It’s important to keep an open mind to avoid missed opportunities.
Betsy: I totally agree with you. How many of us have had numerous different types of jobs before we landed somewhere? When I talk about being open, I mean that our service has to be open to allowing that to happen for people.
-It was asked if there is any wording or leeway for older "retired" folks or folks with dangerous behaviors who cannot interface with the community safely for longer than a few minutes, even with a 3 to 1 staffing ratio.
Betsy: For this specific project we chose to focus on youth who are transitioning. In our larger reform work we’re following the Employment First law and that is definitely something that we would want to have in mind with that work. The purpose of this Value-Based Payment project is focusing on youth in part because our hope is that if we can work on some of those systems when a youth is still in school it will assist them as age. This doesn’t mean we won’t consider employment supports and outcomes for everyone we serve in our programs.
-It was asked if there will be a pathway for people who may be able to work a few hours but not as many as 20 as included in the aim statement.
Betsy: Of course, not everyone can work 20 hours. We wanted to have an aim statement that aims high. Our current data says that we have individuals with ID/DD working three to ten hours per week. Our information tells us that people want to work more, but there isn’t opportunity for a variety of reasons. That’s why we have 20 hours as the aim in the driver diagram.
-It was stated that transportation to work ought to be supported even if people do not receive paid work supports. The ability to work without support is a great goal.
Betsy: Yes, I agree. We know that this is a very real need. When we talk about incentivizing employment and aligning programs and processes that’s something we’re really trying to adjust.
-It was stated that micro employment provides boosts to confidence, competence, and community inclusion. We don’t know the limits of people once they receive opportunities, as what may seem impossible isn’t always the case. Sometimes starting small is the way to discover potential, but even if it doesn’t lead to that, providing opportunity for everyone is worthwhile.
Betsy: Yes, we have a number of people around the state who have their own small businesses which we support, so that’s an option for people. It doesn’t have to be the traditional career path; we can talk about anything that will work for individuals around employment work. And yes, starting small is important.
-It was stated that removing the “firewall” that prevents day hab and residential services from helping individuals reach employment goals would be advantageous. It was stated that currently services are too compartmentalized.
Betsy: We’re looking at a lot of different things around employment. We’ve heard that people would love to have dual roles. It’s something we’re considering and something to which we are open.
-It was stated that having services be siloed feels restrictive. As people get ready for their day, go out to work, eat a meal, take a walk, go shopping for groceries, etc. support staff should be freed up to move seamlessly between activities to build on that. A family member stated that her loved one got to go to a job at a retailer, but he only worked four to five hours a week.
Betsy: Those are the types of examples and feedback that we’re looking for as we move forward with this work.
Betsy: I also wanted to mention that we submitted our report to the Legislature pursuant to LD 1486: Study of Services for Persons with Intellectual Disabilities or Autism and Adequacy of MaineCare Reimbursement, in Relation to Challenging Behavior (click here for the full report). Jane Gallivan worked with us on this report. The report found that the rate structure is not conducive to effectively delivering support services, specifically people with behavioral health needs. The Department is recommending a Value-Based Payment strategy as a support intervention for people with challenging behaviors.
-A parent stated that this is very much needed. Providing behavioral supports needed for people with ID/DD with challenging behaviors requires a great deal of training and requires additional support. Working with local colleges would be advantageous for this training and support as well.
Laura Cordes – MACSP (Maine Association for Community Service Providers): I appreciate you mentioning the report and I want to thank the Department for all of its work on it. Is there anything you can say in terms of the next steps for the Department? We can’t support folks the way we need to in Maine, we’re sending people out of state, and this isn’t good for anyone.
Betsy: We’re looking at tiers of credentials; we’re starting those conversations. As we move forward, we will seek input from stakeholders. We got derailed a little with COVID, but we are working with our partners. We’re also looking at the rates piece, which we know is critical.
Betsy: It seems like a long time ago now, but I previously came to this group to talk about our reform work. I wanted to let people know that we’re very excited to begin this work, move it forward, and come up with a plan to address the gaps in our service system. I’m happy to come and give updates and seek feedback on a regular basis moving forward.
-A parent stated that finding employers open to hiring people with ID/DD has been difficult and a source of great frustration. She stated that some kind of public service announcement and/or greater efforts to get employers interested would be helpful. This is work that Lisa Sturtevant does, but more would also be helpful. This is such a large part of people being able to be part of their communities.
Betsy: You bring up a great point. The driver diagram talks about the supply side but not the demand side, which consists of employers. When we talk about raising expectations and a targeted educational campaign, we’re talking about employers too, informing them of this untapped workforce, etc. And, it may not be a traditional employer/employee model. We’re open to different models and thinking about a broad-spectrum regarding employment.
Cullen: This might come off as controversial, but I did want to mention the barrier of minimum wage payments and that sometimes the benefits people receive from employment would be gained with volunteer experience as well. Being connected to the workforce, doing work that people are proud of, being connected to other employees, having a sense of purpose, all of those things transcend the reimbursement aspect of it. I wonder if there could be a parallel process for volunteer opportunities. So instead of just looking at folks who are looking to be gainfully employed and those who are not, there could be a range of opportunities. People have worked hard for parity and payment, and I appreciate that and would never want to diminish that as it’s vitally important. However, it’s important to keep in mind the aspects of employment that transcend the financial part of it.
Betsy: When we think about the community membership reform group as part of the larger system reform, we’re talking about all aspects of community not just employment. Being employed is a huge connection to people’s communities, but it’s not the only one. There will definitely be opportunities to discuss volunteering and other aspects of being part of the community. Though, we have to be careful that people aren’t doing work that someone else is getting paid for and calling it volunteering. We have run into that. But if it’s something that helps people feel connected to their communities it definitely needs to be supported.
-A parent seconded the idea of volunteering. It’s a spectrum. Life after school years is about quality of life. The umbrella under which everything falls should be quality of life – what kind of meaning can we create so people can blossom? That is key. Another parent stated that her daughter worked for more than two decades and many of those jobs involved cleaning offices etc. However, her daughter also did a lot of volunteer work as well. The expanse of paid opportunities available to her daughter are very limited, but the opportunities to do meaningful work and contribute to her community are interesting and she learns more, and she connects more with people. For a lifetime career she wants more for her daughter than cleaning toilets. People can do a greater variety of things for their community if their employer isn’t required to pay them.
Betsy: We can certainly discuss expanding opportunities for volunteering, especially if it helps with connections in the community and self-esteem and confidence building. We’re not trying to say one is better than the other. Being included in people’s communities is important and how people do that varies.
-A parent stated that a paycheck means very little to her daughter at her job. She likes to dress up and be a "working woman" and be productive. She stated that she works at Maine Medical Center Voc rehab as a second job and one thing they are really focusing on is meaningful employment – not just getting people jobs but real career outlooks.
-A parent stated that years ago her son had a great offer for a volunteer opportunity, which he wasn’t able to do because of that rule about not having volunteers do work for which other staff would be paid. Without the opportunity to volunteer and learn he never would have been able to get that job. If there could be pathways around that, it could help people who need a lot of training to accomplish things but could eventually get there with training acquired through volunteering etc.
Betsy: You bring up a great point. A lot of the folks we’re talking about may not necessarily be able to move into a paid job right after high school. That’s why we’re doing this in conjunction with our partners in DOL, who have supported services for folks including on-the-job training. It’s about using all of our services together, not siloed. And a lot of people don’t know what’s out there for options – that’s something we definitely need to improve.
-It was stated that SUFU (Speaking Up For Us) is another way in which people can be included in their communities and begin to conceptualize employment and self-advocacy. This provides an opportunity to contribute from the civic side too.
Betsy: I want to echo what you’re saying about SUFU. We’ve worked with them quite a bit. They’ve helped us develop ideas and tools, especially now during COVID. They’ve really been doing some great work. I appreciate everyone’s questions and feedback. This is just the first conversation we’ll be having on many levels.
Cullen: I appreciate you taking the time to present this today, being transparent and sharing what your thoughts are, and engaging us in a dialogue with your plans so they can be enriched with inclusive input. Thank you for using this venue for that, I believe we’re all better for it!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: There aren’t really any other updates apart from what I presented. However, we’re still doing our stakeholder meetings every other week, which we will continue at least through September.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: I’ve mentioned a few times with this group that I have been asked to be the lead for our transition strategy. It’s a long-term project, but I want to give an update. We have met with Betsy and the Office of Behavioral Health and the Department of Education and developed a preliminary outline. The work is in progress, but I will definitely be bringing it to this group for input.
Cullen: Betsy’s presentation focused a lot on transition. And, as you know this group developed the Blueprint for Effective Transition, which contemplates the variety of transition’s throughout a person’s life, especially the transition from children’s services to the adult system. This group is very invested in bettering transition for people with ID/DD and I would love to invite you to present at next month’s Coalition meeting!
Teresa: We have put the Blueprint for Effective Transition in the forefront of all of this; it just made sense.
Cullen: It’s exciting to be talking about putting that to work and ensuring that continuity for people so that they can experience smooth transitions throughout the lifespan.
Teresa: It is a long-term project, but there are some aspects that could move quicker. Input from parents regarding what could have helped to make things easier would be advantageous. It seems no matter what has been tried in the past there’s always a gap, so we’re looking at what we can do to make that better.
SMACT (Southern Maine Advisory Council on Transition)
Kathy Adams: As we discussed earlier, SMACT meets monthly from October to May, on the first Friday of the month from 1pm-3pm. Right now, meetings are being held through Zoom. The next meeting is October 2nd, and we’re kicking things off with a presentation from DOE Special Education on transition. November’s meeting will feature Heather Shields, an Occupational Therapist who will be presenting on adaptive driving. SMACT also has a Facebook Page, where you can get up-to-date information.
Special Education:
-It was stated that there are a lot of concerns about how children in Special Education are being supported through remote learning. This is something people will continue to monitor.
Disability Rights Maine (DRM) Update:
Staci Converse: There are a number of resources and trainings about Special Education on our website. In addition to that, there’s a training on Reasonable Accommodations during COVID. This includes a very simple one-page “how to ask for a reasonable accommodation” form. It’s designed for COVID, but it’s applicable to any reasonable accommodation someone might need. We’ve had two clients successfully use it, so I encourage people to take a look at that. DRM partnered with OADS and SUFU to develop a “Person-Centered Discussion Tool for Assessing the Risks of Having Visitors and Accessing the Community”. This is a tool for people receiving services and the people supporting them to assist with making decisions about accessing the community. We’ve been hearing a lot more from people who are limited in their ability to go into the community and left out of those conversations. This presentation and guide are designed to assist with that. This was also presented nationally. If you know people experiencing that and would like some assistance with advocacy, please have them reach out to us. We continue to outreach people at home, right now primarily about voting and the census and any resources they might need. This week we have two voting 101 trainings, the first on Tuesday at 4 and the second on Friday at 7 via Zoom. We’re not posting Zoom information, but I’m happy to share that with you if you reach out: [email protected]. We still continue to do a lot around voting. We’ve been partnering with the local SUFU groups and if anyone wants a training, we’d be happy to arrange them. You can find additional upcoming trainings on our website (scroll down and events are listed at the bottom of the page on the right).
Federal & Housing Updates:
Cullen: On the federal level everything is on hold as we wait to see if Congress passes another stimulus package. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing stability. Congress is currently in negotiations on a fourth stimulus package. There have been competing proposals, the House’s Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act and the Senate’s Health, Economic Assistance, Liability Protection and Schools (HEALS) Act. There is a push from advocates across the country for stimulus funding to include robust funding for $100B of rental assistance, and a large investment in sorely needed affordable housing through the passage of the Affordable Housing Credit Improvement Act of 2019 (S 1703/HR 3077). However, Congress hasn’t been able to come to agreement. It appears that any additional stimulus funding may come after the election.
On 9/1 the White House and the CDC issued a national moratorium on most evictions for nonpayment of rent. This took effect on 9/4 and is in effect through December 31. It applies to covered tenants facing eviction for nonpayment of rent who present a signed declaration to their landlords that they meet certain income and hardship criteria. Additionally, the House passed a package of six spending bills, including T-HUD, for FY 21. This bill would provide a significant increase in funding for housing programs that serve low-income people and communities, and the bill includes two amendments which would block implementation of harmful HUD proposals. However, the Senate has not addressed a T-HUD bill for FY 21. It remains to be seen whether Congress will pass FY 21 funding bills or a continuing resolution in order to keep the government open beyond 9/30 when FY 20 funding ends.
State Legislature Update:
Cullen: Many of the Committees went back to finish work on bills hanging in the balance – many of which passed with large bipartisan majorities and were awaiting funding and/or amendment details and on the Special Appropriations Table when the Legislature adjourned. However, there’s no consensus among the parties to reconvene. Currently it seems unlikely there will be a Special Session, especially as the election gets closer. It remains up to the Governor to call the Legislature back, which she may not do.
Laura Cordes – MACSP (Maine Association for Community Service Providers): I’ll add that it’s highly unlikely that the Legislature will reconvene. MACSP put out an action alert asking people to contact Governor Mills requesting that she utilize CARES Act funds to keep direct support professionals (DSPs) on the frontlines caring for Mainers with ID/DD. As Governor Mills considers where to direct the last of the CARES Act funds, it’s important that she hears from all of us, people who understand the vital role that DSPs have in keeping vulnerable and high-risk Mainers safe through the pandemic. I want to thank folks who responded to the action alert. It would be wonderful if the Governor came through with that request during national DSP week, which just started. Earlier today the Governor released a statement regarding the previously predicted budget shortfall for this fiscal year. It appears that by using unspent funds from last year, CARES Act funding, and unexpected increased revenue from alcohol sales, that they will be able to balance the budget without using the Rainy-Day Fund. However, when the new Legislature convenes and they begin work on the next biennial budget, they will be looking at about $100 million in revenue losses.
Cullen: It’s welcome news that Departments won’t be looking at the 10% across-the-board cuts that the Governor had anticipated. Can you talk about bills of note that were on the Table when the Legislature adjourned?
Laura: The bill to eliminate the waitlists, the bill addressing the recommendations from the Long Term Care Workforce Commission, and the bill that would have provided a $2 per hour rate increase for DSPs were all in flux when the Legislature adjourned – and all had broad support. These bills will have to be reintroduced in the new Legislature.
Cullen: Would it help if people reached out to Legislators expressing their disappointment in having so many important bills left in limbo?
Laura: Sharing disappointment in the Legislature not reconvening can’t hurt, but it’s still highly unlikely to happen. It’s a good time for people to talk to candidates running for office though. Discuss the needs of people with ID/DD and start to build or deepen those relationships.
Cullen: In the past we’ve highlighted that when people in the Legislature hear from three or more people on an issue it helps to raise the alarm as to the issue’s importance. Now is the ideal time to reach out to candidates, tell your story and educate them on the issues that affect you and your family. If they hear from a lot of families, it will help impress upon them the importance of quality services and housing options for people with ID/DD and they will be better equipped to tackle it if/when elected.
Laura: With the pandemic, there are new opportunities and sometimes easier ways in which you can connect with candidates now that things are happening remotely online.
Other Business:
Helen Hemminger: There’s a lot of concern nationally regarding the Census. We were one of three states to start enumeration early. Maine is further along in the process and we went from 47th place to 6th in enumeration nationally. We’re concerned about the undercount of children in general. Unless the Administration decides to reverse its decision to end the Census count early, we have until September 30th to complete the Census. (Click here for information regarding service provider enumeration for the Census.)
Cullen: Thank you for this information Helen. The Census count being accurate is extremely important as it drives federal funding for Maine. Thank you for all of your work to ensure that Maine has an accurate count!
-It was stated that the differences between MaineCare, Medicare, Medicaid, and WellCare can be quite confusing. It was suggested that a future Coalition meeting topic provide information on these and how they pertain to people with ID/DD. It was stated that Legal Services for the Elderly may be a great resource for Medicare and MaineCare benefits information and how they interface together.
Announcements:
- Click here for information on the Mental Health and Developmental Disabilities National Training Center Webinar: Preventing Suicide through Empowerment of Youth with Disabilities on Thursday, 9/17, 2-3 PM ET.
- Click here for a Save the Date for the virtual event Celebrating Employment First in Maine on 10/13.
- Click here for information on the Maine Parent Federation Webinar on 9/21 featuring Trista Collins, Maine’s Medicaid Educational Liaison.
The next meeting will be on Monday, October 19, 2020, 12-2pm, via Zoom.
**Please note this is the third Monday of the month due to the holiday**
Featured Speaker: Teresa Barrows, CBHS Manager, Office of Child and Family Services-DHHS.
Topic: OCFS Update on Transition.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
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].