May 13, 2019
Minutes
Minutes
Present: Paul Saucier, Derek Fales, Mark Kemmerle, Rachel Dyer, Mary Chris Semrow, David Cowing, Debbie Dionne, Margaret Cardoza, Staci Converse, Foxfire Buck, Mana Abdi, John Regan, Erin Rowan, Diane Boas, Laurie Raymond, Kathy Adams, Jamie Whitehouse, Jennifer Putnam, Andy Taranko, Lydia Dawson, Frances Ryan, Misty Niman, Abbie Tanguay, Matt Hickey, Julie Brennan, Barry Schklair, Betsy Mahoney, Dan Bonner, Patrick Moore, Kathy Son, Cullen Ryan, and Vickey Rand. Via Zoom – (Brunswick): Teague Morris, Ray Nagel, Lisa Wesel, Colleen Gilliam. (Auburn): Ann Bentley. (Winthrop): Cathy Dionne. (Sanford): Brenda Smith. (Orono): Alan Kurtz, Bonnie Robinson, and Janet Hamel. (Bangor): Andrew Cassidy and two other attendees. Misc. sites: Helen Hemminger and Bryan Gordon.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Featured Speaker: Paul Saucier, Director, DHHS-Office of Aging and Disability Services (OADS). www.maine.gov/dhhs/oads Topic: OADS Update and related discussion.
Cullen: Our featured speakers today are Paul Saucier and Derek Fales from OADS. It’s wonderful to have the Department firmly around the table, thank you both for presenting today and for being committed to being part of this group moving forward! This Coalition has been around since 2006, and truly began as a grassroots effort to get people to the table to get the system to work better. We began talking about the ways in which services could be streamlined. My original concern was that my son had a lot of people who came in and out of his life very quickly; it seemed to make sense to examine the system and devise ways in which it could be improved to have people working with people like him be paid a professional wage and avoid this. Many people around the table had similar experiences, but also noted that housing was a large concern as well. As such, we determined that housing and services were both key and focused on ways they could be improved for our children. Though the Coalition began as a group of parents, it expanded to welcome and be inclusive of everyone, including self-advocates, providers, the Department, Special Education, transition specialists, other advocates, and stakeholders across the state. The Coalition is designed to be an information clearinghouse. I’m particularly excited that OADS is represented here. Those of you who have not yet met Paul, the best description I’ve heard is that he is a breath of fresh air. We’re fortunate to have a presentation from you today, updating the group on what’s going on at OADS and what we have in store moving forward. Thank you both for being here!
Paul Saucier – Director, OADS: Thank you all for having us around the table and inviting us to present today! I’ve been in this position for a little more than two months now, and I’m starting to get a sense of what needs to be done right away, and what needs to be figured out longer term; that will be the theme you hear from us today. One of the first directives I received from the Commissioner when I started in this position was to go forth and talk to people. That’s my style anyway, but it’s great to be part of an Administration that’s trying to reconnect with the community and repair frayed relationships. It’s been delightful to find that there is a large community of people in the ID/DD world, and that groups exists that want to engage with us! We’re looking forward to that. One of the early commitments we made is we that would participate in this meeting going forward. We’re also attending MDSOAB meetings. We find that it’s really necessary to talk with people and reestablish those ties with the community. We will do other things in terms of engagement going forward, but it’s been great to find a productive and broad group of people willing to engage with us. Thank you for having us. We’d like to spend some time telling you about some of our near-term priorities. Our assessment is there’s a lot to do, but we’re trying to triage and prioritize. It seems one of the things that’s happened over the past few years is that the system lost its way a little – we have the post-Pineland system, and it’s time to move on to the post-post-Pineland system. We’re assessing what’s working well, what needs to be changed, and developing clear, guiding principles for our collective selves.
Begin presentation (Click here to view the Presentation)
Paul: This presentation focuses on our near-term priorities, our Self-Advocacy Request for Proposals (RFP), and upcoming stakeholder engagement opportunities.
Derek Fales: I am happy to be in the role of Acting Associate Director of Developmental Disabilities and Brain Injury Services. Within our office we have been working on reviewing the Section 21 waiver and looking at what this waiver needs to do to be renewed with CMS (Centers for Medicare and Medicaid Services). There are some requirements we need to meet for CMS to approve our waiver. Over the summer, we’ll be doing a lot of listening tours, participating in continued discussions, and examining what we need to address to get the waiver renewal approved. Ideally, we want to go out to public comment this fall. We’re not looking at significant changes, we’re looking at what we can do to move us a little bit forward to meet the HCBS Settings Rule – the new rules published by CMS (Centers and Medicare and Medicaid Services) in 2014. Those rules essentially change the way in which some services can be delivered within the community. There is a deadline of March of 2022 for Maine’s settings to be in compliance. Settings refer to places where waiver services are provided to the member, and those settings must be reviewed to ensure they’re meeting the HCBS settings requirement. We’re looking at borrowing from other states that have already gone through this process – taking from the best of the best in the nation and bringing it to Maine. We’re also hiring a coordinator to bring everyone together and be the point person for this process. This will be a lot of work; we have to look at every type of setting. We can’t get this done unless we work together in a collaborative fashion. We’re also looking at our crisis system – looking at what needs to happen so that we can respond and provide prevention services, because prevention is key.
Paul: You’ll hear a legislative update later about crisis services; there may be some incremental improvements made to the system, but that’s still up in the air. MACSP put in a bill that would have made many changes to crisis services, but we are particularly interested in a centralized intake system. This would help us do more preventative work on the front end, collect better data, and relieve crisis workers in the field. Again, this is all yet to be determined. Also, we’re arguing to put out an RFP for more clinical services for people coming into the system. It won’t be enough, but it will be more than we’re doing today. With clinical services it’s not just paying for the service, but it’s finding someone to provide it. With this RFP, we’d be contracting with someone to ensure they are there and available when needed.
Derek: We’re also looking at licensing one- and two-bedroom residential group homes. We’re looking at making sure all of the group homes have one set of standards and values. I can’t say much more on this as we’re in the process of reviewing all of the public comments and will respond shortly. We’ve also contracted with Jane Gallivan for a whole developmental services system review – what the system looks like today, and where we need to go, including examining the crisis system, our waiver renewal, meeting the HCBS Settings Rule, etc. Jane knows Maine, she knows the system, and she also has done work with other states, helping to push their systems forward. We’re very fortunate to work with Jane on this initiative, as she will be able to position us to talk about different ways of doing things and where the system needs to go during our engagement and conversations with you all this summer. We already know some parts that have to change, so we want to talk about those details, bring them to you for your input and feedback. Even if your ideas aren’t things that can be implemented right away, as we triage what needs to be addressed in the system we can take those ideas and use them for future waiver amendments. We’re excited to look at the whole system and engage with all of you – especially people receiving services because the voice that needs to be at the heart of services is that of the people receiving them.
Paul: Regarding our Self-Advocacy RFP – our plan is to bridge the existing self-advocacy services we fund until the end of the year, and then this summer we’ll put out the Self-Advocacy RFP, with services that would begin in early 2020. The goal of this RFP is to stimulate new ideas about self-advocacy and strengthen it in Maine. There are concerns in Maine about self-advocacy, and this is something to which we’re strongly committed. We’re looking for a self-advocacy network that aligns with national best practices, that really continues the movement in Maine for individuals. I definitely view self-advocates as the key constituency group – we need to strengthen this in Maine because we need to have that voice in the conversation.
Derek: Regarding our 2019 stakeholder engagement opportunities – we’re gearing up for quite a busy summer! We’ll be going out across the state and hearing from all of you. We’re looking to have a DD Advisory Group, comprised of 12-15 members. There will be listening sessions across the state, where we will be listening to what you all have to say, including self-advocates, and collecting all of that information. We want to hear what everyone wants and needs from these services, what’s working well, and what isn’t working. The DD Advisory Group will provide a report and recommendations based on feedback received. The self-advocacy input is imperative, and CMS is very keen on knowing what individuals in Maine are saying about the services they’re receiving.
Paul: Just looking at the near-term work, there’s a ton of work to be done. I want to make sure people’s expectations are where they ought to be relative to what we can and cannot do in the near-term; we need to figure out what’s doable. We amend the Section 21 waiver pretty much every year. Once we know more, we can figure out what can be done. The key is coming up with a reasonable scope of work. We’re hoping to develop a standard set of questions on which all of those groups will comment. We’ll then triage all of the input received to determine what we can do now and what will have to go on the list for the future.
Lydia Dawson – MACSP: I’m wondering if you’re staying connected with the other aspects of DHHS, for instance Voc Rehab., which just announced their regional awards, with no awards for regions IV and V, and the redistribution of regions I-III between only two providers. I’m wondering if OADS is staying attuned to these types of things, so that they’re accounted for in the planning for developmental services, as it’s all interrelated.
Paul: Last week we had a big convening of aging stakeholders. We’re just re-establishing all of these ties. The employment group that had previously convened will be reconvening in the very near future. We’re just getting started on all of this. With Director Landry’s arrival to OCFS, we want to reinvigorate the transition workgroup as well. All of these structures were there, but they hadn’t been well utilized so things didn’t move forward – we’re looking forward to restarting these initiatives and working with the other offices within the Department.
-It was stated that having the Department create an atmosphere conducive to feedback and saying, “what can we do better?” is refreshing.
Paul: We may disagree on things from time to time, but there should never be a fear of speaking up. If people don’t tell us what the issues are we’ll have no way of knowing them. We may not be able to fix everything, but we want to know, we want to have a good dialogue, and continue to move the system forward bit by bit. We’re happy to take any questions you have. What are some additional near-term priorities of which we ought to be aware?
Discussion:
-It was stated that some people in the room had been involved in the MaineCare Advisory Committee (MAC), which is being reinvigorated. It was asked if OADS will be kept apprised of this group’s work.
Paul: Michelle Probert, Director of the Office of MaineCare Services (OMS) and I meet regularly, and all Office Directors meet with the Commissioner weekly. I’m confident that we’ll go down this path together with OMS, and if there are places on which we disagree, we have mechanisms to address them. All of these near-term goals are interrelated. A big fear of mine is despite all of my rhetoric about trying to have a more planful and comprehensive approach to things, because of the demands of the waiver renewal we’ll end up fragmenting our own policy-making. We anticipate groups working on each of those, but we’ll have a cross-departmental steering committee to ensure we keep those different pieces integrated and focused on the same policy goals to avoid any fragmentation.
Derek: Because of the nature of the work, we meet weekly with OMS staff, including the Policy Writer and Director, to discuss what needs to be addressed, what progress has been made, and map out a workplan. These meetings are key.
-A parent stated that her daughter receives Section 29 but has been waiting for years for Section 21 services. She stated that the parental voice is very important to have around the table as well, including how parents can and cannot support their children.
Paul: That’s why we have multiple engagement strategies and opportunities. We want at least one parent representative on the DD Advisory Group for this very reason. We tend to look to organized groups because they have a far better reach. Parents can help get the word out about the listening sessions to ensure their voices are heard. Also, organized parent meetings offer unique opportunities for all involved. We had a request from the Hampden area to meet with a few parents. By the time we went there to meet, there were 18 families that had convened. This was quite effective and efficient for us, as they were all there at one time, providing different perspectives, with a range of different needs. I would encourage you to continue networking and help us get the word out. I would also say in terms of the Legislature; the Appropriations and HHS Committees really pay attention and acutely listen to parents when they tell their stories.
Lydia: I was hoping you could talk more about Adult Protective Services (APS). The last time we received a comprehensive response regarding APS was the Department’s response to the OIG report. The OIG report stated that APS was only investigating 5% of cases reported to them. What percentage is monitored? Has this improved since the OIG report’s findings?
Paul: Yes, we do monitor what’s investigated versus what comes in; there is a triage system. The caseloads have crept up in recent years, we’re not sure to what that can be attributed. If you want to hear more about what’s happening with APS I’d suggest you have Erin Salvo, Derek’s counterpart in APS, come to a future meeting. Is it better? I don’t have any concerns that we are buried in APS cases about which we can’t do anything; I think we have a good handle on that workload. The increase in demand is partly due to effective outreach, especially on financial exploitation – we’re receiving more referrals because this outreach worked.
Mark Kemmerle – MDSOAB (Maine Developmental Services Oversight and Advisory Board): If asked, would APS be able to provide information on how many calls they receive, how many investigators they have, and how they triage the system?
Paul: Yes.
-A self-advocate stated that there was some incredible information in the presentation, and thanked OADS for all of the updates. She asked Paul to clarify if when he referred to parents, if he meant of children under 18 years of age or parents in general.
Paul: It’s all of the above. Some parents continue to support their children forever, at increasing or decreasing levels. I’m not into the distinction between parents of children and adults – parents are parents forever. Hearing from parents as well as self-advocates is extremely important.
-A self-advocate stated that the transportation brokerage system, specifically LogistiCare’s performance, has been abysmal.
Paul: Transportation is a big problem, and it always has been. Can it be better? Yes. The Commissioner has heard from every constituent group and has convened a group within the Department with an eye towards what improvements can be made as the re-procurement of transportation is on the horizon. Then, within our program, how transportation is funded in the waivers is very unclear. We’re trying to clarify that – that might be one of the things we might try to tweak in the Section 21 waiver renewal. The transportation agencies working under LogistiCare are having similar workforce shortages that service providers are having. My key message is the Department definitely knows this is a big issue and we’re trying to come up with some holistic improvements that would affect all of the offices within the Department.
Derek: Transportation is a problem nationally as well. In my conversations with other states I’ve seen that they have similar problems. We’re having ongoing conversations about what is working in other states regarding transportation. This is an ongoing conversation in Maine and other states as well.
-It was stated that self-directed services for this population would be very advantageous.
Paul: I’m a big fan of self-directed services. There are some nuances to this and I want to ensure that if we do it we get it right. As such, this is likely out of the scope of the Section 21 waiver renewal application this time around, but it’s definitely on our radar.
-A parent stated that Maine’s Delegation ought to work on Money Follows the Person on the federal level.
Teague Morris – Senator King’s Office: So noted!
-It was stated that having career centers hold job fairs would be helpful for the workforce shortage. It was stated that this ought to be part of the crisis services conversation, because when agencies don’t have adequate staffing it pushes people into the crisis system. It was asked if there could be a temporary stay in the staff ratio rule. Staffing issues are drastically affecting people’s ability to be included in their communities. It was stated that assistive technology could be useful here as well. A parent stated that 25 years ago it was realistic to dream one day her daughter would be able to own her own home and direct her own services. Now, that’s not really attainable. She stated that the system has moved away from authentic person-centered planning (PCP), and this is one area in which we could improve. She stated that her daughter’s Case Manager hadn’t heard of person-centered planning. She stated that she is 64 and not going to live forever – many young people, her daughter included, need an eclectic mode of supports for their needs.
-It was stated that a few years ago the PCP went into EIS, and this was one of the major changes which eroded the PCP process because it didn’t allow for any creativity. It was asked if there was an update on Evergreen, specifically how it pertains to the PCP.
Derek: We applied for a technical assistance grant to help us with this, which we did not receive. However, we are participating in collaborative planning for person-centered planning, as part of the HCBS Settings Rule. Person-centered means different things for different people. We’re looking to have conversations about this and bringing back PCP training statewide. Yes, we have this new Evergreen system, in which we are required to report on some technical things. However, we want the actual PCP process to be outside of that, and not just be a checklist. How do we redefine the PCP process so it’s not just a checklist in a system? It’s through trainings, in which self-advocates should participate. We’re looking at how we can partner with self-advocacy networks to talk about person-centered practices. This will occur this summer as well, because it also ties in with the HCBS Settings Rule.
-It was stated that if we don’t do something soon where those systems are married we’re going to end up with more segregation – if there isn’t enough staff, people can’t get out into the community. It was stated that as Paul mentioned earlier, we’re in the post-Pineland system currently, but the danger is that we could go back to the Pineland days.
Derek: Remote monitoring and the ability to use assistive technology has to be an option in the settings rule. These are conversations that we must have, to determine what must be changed in policy to allow for more flexibility and creativity. We’re always talking about the dignity of risk, informed risk – what someone’s life could be like with paid-staff, assistive technology, and natural supports combined. The waivers are intended to support natural supports and networks. People don’t want to have to rely on a paid staff person, who will stay for who knows how long. It’s about asking how do we support that person and build that network for them?
Cullen: To hear you speak of dignity of risk so matter-of-factly is spectacular, as that is a concept that evolved from this group’s DD CoC.
-A provider stated that all of the planning is valid and relevant, however, every single industry in Maine is being affected by a major workforce crisis. It was stated that if agencies don’t have staff none of these plans will work. Staffing is critical. It was stated that part of the equation are behavioral challenges. Crisis beds are designed to be used for actual crises, not for when agencies don’t have sufficient staffing ratios. Most people are too afraid to mention the frank truth – that is the truth. He stated that until staffing is addressed, nothing else matters. We must find a way to bring people into the state of Maine to fill these vacancies. Without staff, the system can’t function.
Paul: We hear the same thing throughout other services, it’s definitely an issue.
Cullen: It’s been wonderful to have you here. Thank you for being that breath of fresh air, for listening, and for engaging in an interactive dialogue with us. I hope you’ll keep coming back. Thank you!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Click here for the most recent OADS update (posted on its website on 5/2).
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Click here for the most recent OCFS update (posted on its website on 5/9).
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT finished up last week; meetings will begin again in October!
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group, which met earlier this morning, is back to fulfilling its original purpose acting as a thinktank for OADS. The stated purpose of the group is: “A strategic resource for comprehensive system change, and being a resource for consultation, optimizing, advising, path finding, and streamlining.” This group is rejuvenated and it looks forward to working with OADS, re-examining the Developmental Services Lifelong CoC (DD CoC), and finding a way to boil down the DD CoC to a few key points that will allow it to become something to guide the Legislature, which wants to help but doesn’t know where to begin. More to follow next month!
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): So much is going on that it’s hard to summarize, but here is some information on a few large areas of interest we’re following:
Federal & Housing Updates:
Cullen: Congress is working on the FY 20 allocations and budget, which begins 10/1/19. If Congress does not lift the Budget Control Act federal spending caps, sequestration would occur, as the previous agreement to lift the caps only included FY 18 & 19. Our Delegation is on board with raising the caps and avoiding sequestration, especially thanks to Senators Collins and King for their steadfast support. Additionally, Freddie, Fannie, and Ginnie Mae are all down on receipts, which will affect available funding for HUD unless Congress authorizes additional funding. Just to keep housing where it is currently, there is a $7-8 billion gap which will need to be addressed in addition to raising the caps.
Teague Morris – Senator King’s Office: Senator King is co-sponsoring S.260, The Transformation to Competitive Employment Act, and S.427, the Autism CARES Act of 2019 (also co-sponsored by Senator Collins). The Transformation to Competitive Employment Act, per Senator King’s May 2nd press release is “bicameral legislation that would provide states, service providers, subminimum wage certificate holders, and other entities with the resources to help workers with disabilities transition into competitive, integrated employment.” (Click here for the press release.) The Autism CARES Act of 2019 would amend the Public Health Service Act to enhance activities of the National Institutes of Health with respect to research on autism spectrum disorder and enhance programs relating to autism.
Cullen: Many thanks to Senator King for his advocacy on these bills, well done!
Disability Rights Maine (DRM) Update:
Staci Converse: We’ve had a lot going on! We’ve been doing a lot of outreach to get more information about settings, and we continue to do a lot of work around SDM. We’re also going to increase the number of rights trainings we hold. We currently hold these trainings with the Department in conjunction with other trainings and it ends up being three hours altogether, which likely affects direct service providers being able to attend. We’re going to do a more condensed rights training to potentially remedy this. There are several young people who receive nursing services in their home. It’s always been a problem when they transition to adult services because of Medicaid law. These children are going from receiving 24/7 services, to the adult services system where their services dramatically decline. This group of individuals often get left out of the conversation, though they represent a much smaller group, but this transition is particularly hard for them and their families – the cliff of no services is much steeper.
The next meeting will be on June 10, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker: Doug Malcolm, Founder/Director, Portland Wheelers. Topic: An overview of the Portland Wheelers program and how it works to create community inclusion for people with disabilities by providing opportunities for people to get outdoors for therapeutic recreation, adventure, and fun through bicycling and adaptive-tricycling.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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 introduced themselves. Minutes from the last meeting were accepted.
Featured Speaker: Paul Saucier, Director, DHHS-Office of Aging and Disability Services (OADS). www.maine.gov/dhhs/oads Topic: OADS Update and related discussion.
Cullen: Our featured speakers today are Paul Saucier and Derek Fales from OADS. It’s wonderful to have the Department firmly around the table, thank you both for presenting today and for being committed to being part of this group moving forward! This Coalition has been around since 2006, and truly began as a grassroots effort to get people to the table to get the system to work better. We began talking about the ways in which services could be streamlined. My original concern was that my son had a lot of people who came in and out of his life very quickly; it seemed to make sense to examine the system and devise ways in which it could be improved to have people working with people like him be paid a professional wage and avoid this. Many people around the table had similar experiences, but also noted that housing was a large concern as well. As such, we determined that housing and services were both key and focused on ways they could be improved for our children. Though the Coalition began as a group of parents, it expanded to welcome and be inclusive of everyone, including self-advocates, providers, the Department, Special Education, transition specialists, other advocates, and stakeholders across the state. The Coalition is designed to be an information clearinghouse. I’m particularly excited that OADS is represented here. Those of you who have not yet met Paul, the best description I’ve heard is that he is a breath of fresh air. We’re fortunate to have a presentation from you today, updating the group on what’s going on at OADS and what we have in store moving forward. Thank you both for being here!
Paul Saucier – Director, OADS: Thank you all for having us around the table and inviting us to present today! I’ve been in this position for a little more than two months now, and I’m starting to get a sense of what needs to be done right away, and what needs to be figured out longer term; that will be the theme you hear from us today. One of the first directives I received from the Commissioner when I started in this position was to go forth and talk to people. That’s my style anyway, but it’s great to be part of an Administration that’s trying to reconnect with the community and repair frayed relationships. It’s been delightful to find that there is a large community of people in the ID/DD world, and that groups exists that want to engage with us! We’re looking forward to that. One of the early commitments we made is we that would participate in this meeting going forward. We’re also attending MDSOAB meetings. We find that it’s really necessary to talk with people and reestablish those ties with the community. We will do other things in terms of engagement going forward, but it’s been great to find a productive and broad group of people willing to engage with us. Thank you for having us. We’d like to spend some time telling you about some of our near-term priorities. Our assessment is there’s a lot to do, but we’re trying to triage and prioritize. It seems one of the things that’s happened over the past few years is that the system lost its way a little – we have the post-Pineland system, and it’s time to move on to the post-post-Pineland system. We’re assessing what’s working well, what needs to be changed, and developing clear, guiding principles for our collective selves.
Begin presentation (Click here to view the Presentation)
Paul: This presentation focuses on our near-term priorities, our Self-Advocacy Request for Proposals (RFP), and upcoming stakeholder engagement opportunities.
Derek Fales: I am happy to be in the role of Acting Associate Director of Developmental Disabilities and Brain Injury Services. Within our office we have been working on reviewing the Section 21 waiver and looking at what this waiver needs to do to be renewed with CMS (Centers for Medicare and Medicaid Services). There are some requirements we need to meet for CMS to approve our waiver. Over the summer, we’ll be doing a lot of listening tours, participating in continued discussions, and examining what we need to address to get the waiver renewal approved. Ideally, we want to go out to public comment this fall. We’re not looking at significant changes, we’re looking at what we can do to move us a little bit forward to meet the HCBS Settings Rule – the new rules published by CMS (Centers and Medicare and Medicaid Services) in 2014. Those rules essentially change the way in which some services can be delivered within the community. There is a deadline of March of 2022 for Maine’s settings to be in compliance. Settings refer to places where waiver services are provided to the member, and those settings must be reviewed to ensure they’re meeting the HCBS settings requirement. We’re looking at borrowing from other states that have already gone through this process – taking from the best of the best in the nation and bringing it to Maine. We’re also hiring a coordinator to bring everyone together and be the point person for this process. This will be a lot of work; we have to look at every type of setting. We can’t get this done unless we work together in a collaborative fashion. We’re also looking at our crisis system – looking at what needs to happen so that we can respond and provide prevention services, because prevention is key.
Paul: You’ll hear a legislative update later about crisis services; there may be some incremental improvements made to the system, but that’s still up in the air. MACSP put in a bill that would have made many changes to crisis services, but we are particularly interested in a centralized intake system. This would help us do more preventative work on the front end, collect better data, and relieve crisis workers in the field. Again, this is all yet to be determined. Also, we’re arguing to put out an RFP for more clinical services for people coming into the system. It won’t be enough, but it will be more than we’re doing today. With clinical services it’s not just paying for the service, but it’s finding someone to provide it. With this RFP, we’d be contracting with someone to ensure they are there and available when needed.
Derek: We’re also looking at licensing one- and two-bedroom residential group homes. We’re looking at making sure all of the group homes have one set of standards and values. I can’t say much more on this as we’re in the process of reviewing all of the public comments and will respond shortly. We’ve also contracted with Jane Gallivan for a whole developmental services system review – what the system looks like today, and where we need to go, including examining the crisis system, our waiver renewal, meeting the HCBS Settings Rule, etc. Jane knows Maine, she knows the system, and she also has done work with other states, helping to push their systems forward. We’re very fortunate to work with Jane on this initiative, as she will be able to position us to talk about different ways of doing things and where the system needs to go during our engagement and conversations with you all this summer. We already know some parts that have to change, so we want to talk about those details, bring them to you for your input and feedback. Even if your ideas aren’t things that can be implemented right away, as we triage what needs to be addressed in the system we can take those ideas and use them for future waiver amendments. We’re excited to look at the whole system and engage with all of you – especially people receiving services because the voice that needs to be at the heart of services is that of the people receiving them.
Paul: Regarding our Self-Advocacy RFP – our plan is to bridge the existing self-advocacy services we fund until the end of the year, and then this summer we’ll put out the Self-Advocacy RFP, with services that would begin in early 2020. The goal of this RFP is to stimulate new ideas about self-advocacy and strengthen it in Maine. There are concerns in Maine about self-advocacy, and this is something to which we’re strongly committed. We’re looking for a self-advocacy network that aligns with national best practices, that really continues the movement in Maine for individuals. I definitely view self-advocates as the key constituency group – we need to strengthen this in Maine because we need to have that voice in the conversation.
Derek: Regarding our 2019 stakeholder engagement opportunities – we’re gearing up for quite a busy summer! We’ll be going out across the state and hearing from all of you. We’re looking to have a DD Advisory Group, comprised of 12-15 members. There will be listening sessions across the state, where we will be listening to what you all have to say, including self-advocates, and collecting all of that information. We want to hear what everyone wants and needs from these services, what’s working well, and what isn’t working. The DD Advisory Group will provide a report and recommendations based on feedback received. The self-advocacy input is imperative, and CMS is very keen on knowing what individuals in Maine are saying about the services they’re receiving.
Paul: Just looking at the near-term work, there’s a ton of work to be done. I want to make sure people’s expectations are where they ought to be relative to what we can and cannot do in the near-term; we need to figure out what’s doable. We amend the Section 21 waiver pretty much every year. Once we know more, we can figure out what can be done. The key is coming up with a reasonable scope of work. We’re hoping to develop a standard set of questions on which all of those groups will comment. We’ll then triage all of the input received to determine what we can do now and what will have to go on the list for the future.
Lydia Dawson – MACSP: I’m wondering if you’re staying connected with the other aspects of DHHS, for instance Voc Rehab., which just announced their regional awards, with no awards for regions IV and V, and the redistribution of regions I-III between only two providers. I’m wondering if OADS is staying attuned to these types of things, so that they’re accounted for in the planning for developmental services, as it’s all interrelated.
Paul: Last week we had a big convening of aging stakeholders. We’re just re-establishing all of these ties. The employment group that had previously convened will be reconvening in the very near future. We’re just getting started on all of this. With Director Landry’s arrival to OCFS, we want to reinvigorate the transition workgroup as well. All of these structures were there, but they hadn’t been well utilized so things didn’t move forward – we’re looking forward to restarting these initiatives and working with the other offices within the Department.
-It was stated that having the Department create an atmosphere conducive to feedback and saying, “what can we do better?” is refreshing.
Paul: We may disagree on things from time to time, but there should never be a fear of speaking up. If people don’t tell us what the issues are we’ll have no way of knowing them. We may not be able to fix everything, but we want to know, we want to have a good dialogue, and continue to move the system forward bit by bit. We’re happy to take any questions you have. What are some additional near-term priorities of which we ought to be aware?
Discussion:
-It was stated that some people in the room had been involved in the MaineCare Advisory Committee (MAC), which is being reinvigorated. It was asked if OADS will be kept apprised of this group’s work.
Paul: Michelle Probert, Director of the Office of MaineCare Services (OMS) and I meet regularly, and all Office Directors meet with the Commissioner weekly. I’m confident that we’ll go down this path together with OMS, and if there are places on which we disagree, we have mechanisms to address them. All of these near-term goals are interrelated. A big fear of mine is despite all of my rhetoric about trying to have a more planful and comprehensive approach to things, because of the demands of the waiver renewal we’ll end up fragmenting our own policy-making. We anticipate groups working on each of those, but we’ll have a cross-departmental steering committee to ensure we keep those different pieces integrated and focused on the same policy goals to avoid any fragmentation.
Derek: Because of the nature of the work, we meet weekly with OMS staff, including the Policy Writer and Director, to discuss what needs to be addressed, what progress has been made, and map out a workplan. These meetings are key.
-A parent stated that her daughter receives Section 29 but has been waiting for years for Section 21 services. She stated that the parental voice is very important to have around the table as well, including how parents can and cannot support their children.
Paul: That’s why we have multiple engagement strategies and opportunities. We want at least one parent representative on the DD Advisory Group for this very reason. We tend to look to organized groups because they have a far better reach. Parents can help get the word out about the listening sessions to ensure their voices are heard. Also, organized parent meetings offer unique opportunities for all involved. We had a request from the Hampden area to meet with a few parents. By the time we went there to meet, there were 18 families that had convened. This was quite effective and efficient for us, as they were all there at one time, providing different perspectives, with a range of different needs. I would encourage you to continue networking and help us get the word out. I would also say in terms of the Legislature; the Appropriations and HHS Committees really pay attention and acutely listen to parents when they tell their stories.
Lydia: I was hoping you could talk more about Adult Protective Services (APS). The last time we received a comprehensive response regarding APS was the Department’s response to the OIG report. The OIG report stated that APS was only investigating 5% of cases reported to them. What percentage is monitored? Has this improved since the OIG report’s findings?
Paul: Yes, we do monitor what’s investigated versus what comes in; there is a triage system. The caseloads have crept up in recent years, we’re not sure to what that can be attributed. If you want to hear more about what’s happening with APS I’d suggest you have Erin Salvo, Derek’s counterpart in APS, come to a future meeting. Is it better? I don’t have any concerns that we are buried in APS cases about which we can’t do anything; I think we have a good handle on that workload. The increase in demand is partly due to effective outreach, especially on financial exploitation – we’re receiving more referrals because this outreach worked.
Mark Kemmerle – MDSOAB (Maine Developmental Services Oversight and Advisory Board): If asked, would APS be able to provide information on how many calls they receive, how many investigators they have, and how they triage the system?
Paul: Yes.
-A self-advocate stated that there was some incredible information in the presentation, and thanked OADS for all of the updates. She asked Paul to clarify if when he referred to parents, if he meant of children under 18 years of age or parents in general.
Paul: It’s all of the above. Some parents continue to support their children forever, at increasing or decreasing levels. I’m not into the distinction between parents of children and adults – parents are parents forever. Hearing from parents as well as self-advocates is extremely important.
-A self-advocate stated that the transportation brokerage system, specifically LogistiCare’s performance, has been abysmal.
Paul: Transportation is a big problem, and it always has been. Can it be better? Yes. The Commissioner has heard from every constituent group and has convened a group within the Department with an eye towards what improvements can be made as the re-procurement of transportation is on the horizon. Then, within our program, how transportation is funded in the waivers is very unclear. We’re trying to clarify that – that might be one of the things we might try to tweak in the Section 21 waiver renewal. The transportation agencies working under LogistiCare are having similar workforce shortages that service providers are having. My key message is the Department definitely knows this is a big issue and we’re trying to come up with some holistic improvements that would affect all of the offices within the Department.
Derek: Transportation is a problem nationally as well. In my conversations with other states I’ve seen that they have similar problems. We’re having ongoing conversations about what is working in other states regarding transportation. This is an ongoing conversation in Maine and other states as well.
-It was stated that self-directed services for this population would be very advantageous.
Paul: I’m a big fan of self-directed services. There are some nuances to this and I want to ensure that if we do it we get it right. As such, this is likely out of the scope of the Section 21 waiver renewal application this time around, but it’s definitely on our radar.
-A parent stated that Maine’s Delegation ought to work on Money Follows the Person on the federal level.
Teague Morris – Senator King’s Office: So noted!
-It was stated that having career centers hold job fairs would be helpful for the workforce shortage. It was stated that this ought to be part of the crisis services conversation, because when agencies don’t have adequate staffing it pushes people into the crisis system. It was asked if there could be a temporary stay in the staff ratio rule. Staffing issues are drastically affecting people’s ability to be included in their communities. It was stated that assistive technology could be useful here as well. A parent stated that 25 years ago it was realistic to dream one day her daughter would be able to own her own home and direct her own services. Now, that’s not really attainable. She stated that the system has moved away from authentic person-centered planning (PCP), and this is one area in which we could improve. She stated that her daughter’s Case Manager hadn’t heard of person-centered planning. She stated that she is 64 and not going to live forever – many young people, her daughter included, need an eclectic mode of supports for their needs.
-It was stated that a few years ago the PCP went into EIS, and this was one of the major changes which eroded the PCP process because it didn’t allow for any creativity. It was asked if there was an update on Evergreen, specifically how it pertains to the PCP.
Derek: We applied for a technical assistance grant to help us with this, which we did not receive. However, we are participating in collaborative planning for person-centered planning, as part of the HCBS Settings Rule. Person-centered means different things for different people. We’re looking to have conversations about this and bringing back PCP training statewide. Yes, we have this new Evergreen system, in which we are required to report on some technical things. However, we want the actual PCP process to be outside of that, and not just be a checklist. How do we redefine the PCP process so it’s not just a checklist in a system? It’s through trainings, in which self-advocates should participate. We’re looking at how we can partner with self-advocacy networks to talk about person-centered practices. This will occur this summer as well, because it also ties in with the HCBS Settings Rule.
-It was stated that if we don’t do something soon where those systems are married we’re going to end up with more segregation – if there isn’t enough staff, people can’t get out into the community. It was stated that as Paul mentioned earlier, we’re in the post-Pineland system currently, but the danger is that we could go back to the Pineland days.
Derek: Remote monitoring and the ability to use assistive technology has to be an option in the settings rule. These are conversations that we must have, to determine what must be changed in policy to allow for more flexibility and creativity. We’re always talking about the dignity of risk, informed risk – what someone’s life could be like with paid-staff, assistive technology, and natural supports combined. The waivers are intended to support natural supports and networks. People don’t want to have to rely on a paid staff person, who will stay for who knows how long. It’s about asking how do we support that person and build that network for them?
Cullen: To hear you speak of dignity of risk so matter-of-factly is spectacular, as that is a concept that evolved from this group’s DD CoC.
-A provider stated that all of the planning is valid and relevant, however, every single industry in Maine is being affected by a major workforce crisis. It was stated that if agencies don’t have staff none of these plans will work. Staffing is critical. It was stated that part of the equation are behavioral challenges. Crisis beds are designed to be used for actual crises, not for when agencies don’t have sufficient staffing ratios. Most people are too afraid to mention the frank truth – that is the truth. He stated that until staffing is addressed, nothing else matters. We must find a way to bring people into the state of Maine to fill these vacancies. Without staff, the system can’t function.
Paul: We hear the same thing throughout other services, it’s definitely an issue.
Cullen: It’s been wonderful to have you here. Thank you for being that breath of fresh air, for listening, and for engaging in an interactive dialogue with us. I hope you’ll keep coming back. Thank you!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Click here for the most recent OADS update (posted on its website on 5/2).
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Click here for the most recent OCFS update (posted on its website on 5/9).
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT finished up last week; meetings will begin again in October!
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group, which met earlier this morning, is back to fulfilling its original purpose acting as a thinktank for OADS. The stated purpose of the group is: “A strategic resource for comprehensive system change, and being a resource for consultation, optimizing, advising, path finding, and streamlining.” This group is rejuvenated and it looks forward to working with OADS, re-examining the Developmental Services Lifelong CoC (DD CoC), and finding a way to boil down the DD CoC to a few key points that will allow it to become something to guide the Legislature, which wants to help but doesn’t know where to begin. More to follow next month!
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): So much is going on that it’s hard to summarize, but here is some information on a few large areas of interest we’re following:
- The Health and Human Services Committee (HHS) Committee recently unanimously passed one of the bills we were monitoring pertaining to Children’s Services, which would require the Department to create brand new services for kids with ID/DD. We’re working with the Department to flesh out what the services would look like.
- We’re hoping to get more information regarding the crisis services central intake system that Paul mentioned in his presentation, which is included in a broader crisis services bill in the Legislature. The Department has stated that it’s willing to take on some aspects of the bill, which would avoid having to go through the legislative process. The HHS Committee is reviewing this next week. We’re hoping for broad support for this bill from the Committee, but the Committee wants to hear what the Department is willing to do before they take a prescriptive approach for how the Department provides services.
- The HHS Committee and the Department is taking a similar approach with the bill pertaining to a mortality review panel, a bill submitted by the MDSOAB. This bill would create a panel that would review deaths of individuals receiving services and provide information about trends. The bill has been tabled until Wednesday, to allow the Department to inform the Committee what it is willing to move forward on without legislative intervention, and what would require legislative approval before being adopted.
- LD 1535, An Act to Correct Errors and Inconsistencies Related to the Maine Uniform Probate Code and To Make Other Substantive Changes is also in progress in the Legislature. There was a Public Hearing in front of the Judiciary Committee on 4/29. There are aspects of this bill that look specifically at the changes to the Probate Code that are supposed to go into effect in July regarding guardianship and supported decision-making (SDM). There are various amendments to this bill, some of which would provide more protections to the individual receiving services by allowing the judge to monitor the chosen decision-makers, require background checks, require specific reporting, etc. The main subject of these amendments is SDM and whether there should be additional checks within the SDM process. A Work Session has yet to be scheduled, so the amendments being considered haven’t been released publicly.
- There are also bills that include new labor mandates – such as the bill which would require pick sick leave, and a bill regarding minimum wage, both of which would affect service providers. There is a big push in the MaineCare provider community, not just providers of developmental services, to get rates to match the new labor costs.
- We’re keeping an eye on the Governor’s bills around CDS (Child Development Services) and preschools –which would present large changes to how services are currently delivered.
- The provider community also remains concerned about rates. We’re waiting to see if the Department will put forward a plan about addressing rates, or if the Legislature will push them to do so. This is yet to be determined.
Federal & Housing Updates:
Cullen: Congress is working on the FY 20 allocations and budget, which begins 10/1/19. If Congress does not lift the Budget Control Act federal spending caps, sequestration would occur, as the previous agreement to lift the caps only included FY 18 & 19. Our Delegation is on board with raising the caps and avoiding sequestration, especially thanks to Senators Collins and King for their steadfast support. Additionally, Freddie, Fannie, and Ginnie Mae are all down on receipts, which will affect available funding for HUD unless Congress authorizes additional funding. Just to keep housing where it is currently, there is a $7-8 billion gap which will need to be addressed in addition to raising the caps.
Teague Morris – Senator King’s Office: Senator King is co-sponsoring S.260, The Transformation to Competitive Employment Act, and S.427, the Autism CARES Act of 2019 (also co-sponsored by Senator Collins). The Transformation to Competitive Employment Act, per Senator King’s May 2nd press release is “bicameral legislation that would provide states, service providers, subminimum wage certificate holders, and other entities with the resources to help workers with disabilities transition into competitive, integrated employment.” (Click here for the press release.) The Autism CARES Act of 2019 would amend the Public Health Service Act to enhance activities of the National Institutes of Health with respect to research on autism spectrum disorder and enhance programs relating to autism.
Cullen: Many thanks to Senator King for his advocacy on these bills, well done!
Disability Rights Maine (DRM) Update:
Staci Converse: We’ve had a lot going on! We’ve been doing a lot of outreach to get more information about settings, and we continue to do a lot of work around SDM. We’re also going to increase the number of rights trainings we hold. We currently hold these trainings with the Department in conjunction with other trainings and it ends up being three hours altogether, which likely affects direct service providers being able to attend. We’re going to do a more condensed rights training to potentially remedy this. There are several young people who receive nursing services in their home. It’s always been a problem when they transition to adult services because of Medicaid law. These children are going from receiving 24/7 services, to the adult services system where their services dramatically decline. This group of individuals often get left out of the conversation, though they represent a much smaller group, but this transition is particularly hard for them and their families – the cliff of no services is much steeper.
The next meeting will be on June 10, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker: Doug Malcolm, Founder/Director, Portland Wheelers. Topic: An overview of the Portland Wheelers program and how it works to create community inclusion for people with disabilities by providing opportunities for people to get outdoors for therapeutic recreation, adventure, and fun through bicycling and adaptive-tricycling.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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].