June 8, 2020
Minutes
Minutes
Attendees via Zoom: The Honorable Senator Angus King Jr., Jennifer Putnam, Kim Humphrey, Alli Vercoe, Amanda Parker, Amy Moller, Andy Taranko, Angela Duff, Ann Bentley, Ann Russell, Anne Bourque, Barry, Ben, Beth Morse, Betsy Hopkins, Betsy Mahoney, Betsy Morrison, Bonnie Robinson, Brenda Smith, Brendan Hogan, Brian Day, Carrie Woodcock, Catherine Thibedeau, C Call, Craig Patterson, C Warren, Darla Chafin, David Cowing, D Bonner, Deanna Wilson, Debbie Dionne, Diane Johanson, Diane Boas, Dylan Campbell, Ed and Suellen Doggett, Heidi Mansir, Helen Hemminger, Hillary Steinau, H Randall, Jaime Edwards, Jamie Whitehouse, Janet Hammel, Jayne Vandussen, Julie Brennan, Jenn Brooking, Jennifer Kinnelly, Karen Groat, Karri Bennett, Kenneth Faulkner, L Doughty, Luann, Joanna Bulger, Jodi Benvie, Jodie Hall, Johanna Reppucci, Johanna, Karen Wheelock, Karissa G, Laura Cordes, Kerri and Steve McKenna, Maria Cameron, Marlene, Mark Kemmerle, Michael, Maureen, Mary Chris Semrow, Megan DesCamps, Michael Drouin, Misty Niman, Natalie Childs, Ned Claxton, Paula Bush, Pete Plummer, Rachel Dyer, Ray Nagel, Rebecca Millett, Robin Levesque, Rory Robb, Shannon Burns, Sierra Hillebrand, Simonne Maline, Stacy Lamontagne, Steve Richard, Tammy Hatch, Tara Hembree, Teague Morris, Teresa Barrows, Todd Goodwin, Todd McKenna, Victoria McCarty, Wanda Lindsay, William Guindon, Zoe Sweet, 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.
Special guest: The Honorable Senator Angus King Jr. (Senator King graciously and thoughtfully reached out with the desire to check in with families of children with special needs, especially during this pandemic).
Cullen: Welcome and thank you very much for taking time to meet with us Senator King; this is a truly wonderful opportunity! You have a group of people here who are mostly parents, but also some providers of services, advocates, family members, people who are involved in Special Education, people who assist people with intellectual and developmental disabilities (ID/DD) transition from youth to adulthood, folks from the Maine Parent Federation, and numerous other advocates including Disability Rights Maine and the Maine Developmental Disabilities Council. This coalition provides a great opportunity for all of us to come together and see what’s going on in the world for people with ID/DD, help improve the system, and provide a clearinghouse of information for individuals and family members. It’s a pleasure to have you here, Senator King. In May of 2017, you gave a floor speech in the Senate regarding proposed cuts to Medicaid and how these cuts would have a devasting effect on people with ID/DD in Maine. One thing you said specifically stuck with me: “What happens when we make these cuts? What happens to Lidia? What happens to Dan? Who will speak for them? I will – and I hope this body will." You have stood by these words, and to this day this speech fills us all with pride, hearing you very eloquently and articulately state the needs of people with ID/DD, and why those needs are extremely important to address. Throughout your time in the Senate we’ve appealed to you for on a variety of issues, including ensuring Medicaid stays adequately funded so that people with ID/DD can receive adequate services to remain safe and be included in their communities. And, we’ve discussed the importance of Section 8 and housing development, so people have safe, affordable places to live in their communities. I want to thank you for all of your leadership in the Senate. You have been a voice and a steadfast champion for this population, and we are extremely grateful. Thank you for coming to speak and listen to this group!
Senator King: Thank you for having me. Truly, I’m here to listen to you all. There’s a lot of knowledge and expertise in the people around the table. I really do want to listen. You know how I feel, where my commitment lies. I worry a little bit, although it’s not being overtly discussed, that Medicaid is always a target. That some people in Congress and the Administration will think that we’ve spent too much on Coronavirus and we need to cut back, which may provide an excuse for some to target Medicaid. I’m not predicting it or trying to scare people, but there are always people wanting to cut back on people’s healthcare coverage. It strikes me that parents of people with disabilities have experienced unprecedented challenges recently. This winter and spring have to have been extremely difficult because of the lockdown, the fact that the schools weren’t open, the whole idea of distance learning which works for many people but not for others, the limitations on childcare, all amid a pandemic. All of the problems of the last several months I’m sure have fallen particularly hard on parents of people with ID/DD. I understand that may be the case and am interested in seeing if I’m right about that, and if so, what we can do. The big question is what’s going to happen in the fall – will schools re-open, or will people still be practicing distance learning? Will there by shifts at schools, will teachers wear mask, etc.? In Maine, it’s a local decision. The Maine DOE (Department of Education) is trying to provide the best guidance it can and is actively working on what they will do in the fall. It will ultimately be up to people in the state in how they handle this and what they decide to do. I want to hear what the experience has been, where the barriers have been in the federal government’s response, and where we might look to provide some additional help.
Discussion:
-A parent stated that she hasn’t seen her son, who is non-verbal and lives in a group home, since the pandemic started. One of her son’s housemates and staff have recently tested positive for COVID-19, adding an additional layer of stress, concern, and fear for her son’s safety. On top of the pandemic, there was already a workforce crisis in Maine, with the rates paid to the Direct Support Professionals (DSPs) who provide direct care to people with ID/DD not close to commensurate with the expertise and skills needed to perform the job, which is essential to quality of life for this population. There has been some support from the State regarding recognizing the need to increase DSP rates, and including a rate increase in its recently approved Appendix K Waiver. However, it does not come close to covering the costs associated with a professional wage and the increased PPE (personal protective equipment) needed to safely perform the job amid the pandemic. People with ID/DD often quickly lose the skills that they have worked for years to build when they lose their staff and/or there are large changes to their daily routines. What will happen to people’s skill sets when this pandemic concludes? People will likely need increased services in order to gain the ground lost during the pandemic. People with ID/DD ought to be a priority population for both state and federal funding. These are critical services people depend upon to lead their daily lives in the best of times, let alone during a pandemic.
-Many parents spoke of their experiences during the pandemic – specifically the extreme challenges associated with many home and community-based services not being available, with parents and family members having to become their loved ones’ complete caregivers – overnight. Not only is it challenging, it is also all-encompassing and exceptionally tiring. Many stated that everyone is doing the best they can to get by in this time and look forward to provider agencies being able to be provide services again. Many expressed their concerns that some agencies won’t be able to come through the pandemic on the other side, due to the extreme financial hardships faced, on top of their loss of staff due to low wages. This loss of staff translates to loss of expertise as well.
Senator King: The loss of staff is very concerning. You all have touched on something important: Medicaid reimbursement rates. The State is being hammered right now by COVID-19’s effect on revenues. Communities all over Maine are starting to have to lay off or furlough staff, they’re building in vacancies for their next fiscal year budgets. My urging to you: Please, in the next few days be in touch with your friends and colleagues in other states, to tell them to be in touch with their Senators expressing that aid to the states is an urgent problem. Right now in the Senate, Majority Leader McConnell doesn’t think it's urgent, therefore we’re not addressing it. The State of Maine is in fairly decent shape through the end of the fiscal year, which ends in three weeks. However, next year doesn’t look good at all; the State must balance its budget and if revenues collapse the only recourse is budget cuts. The two biggest spending programs in Maine are general purpose aid for education and Medicaid. Cuts in those areas would be tragic. There needs to be another round of COVID-19 assistance. I’m a little afraid people will say the pandemic is over, let’s move on, we don’t have to do anything further. But we do. That’s my strong urging today. You don’t need to call me, I’m already with you, but we do need some serious advocacy around the country around this critical issue.
-Parents of younger, school-aged children with ID/DD provided insight into the challenges they are facing during the pandemic. Maine Parent Federation, Autism Society of Maine, and the Maine Developmental Disabilities Council recently conducted a survey regarding families’ experiences with virtual learning and their hopes for the fall. Parents and families responded stating they would like their children to receive more one-on-one time with educators, whether that occurs in-person or via Zoom meetings. There is a population of children with ID/DD who were completely unable to access distance learning, even with all the efforts made by the school departments. When the pandemic hit, many school-aged children with disabilities lost connections to education, as well as their in-home and community-based supports. Those families were left with trying to provide an education for their children, their home and community support services, on top of working themselves. With distance learning, computers became triggers for children, behaviors increased, and some families felt they were at risk, especially families with more than one child. Trying to navigate the circumstances without supports became increasingly difficult. If virtual learning is continued in the fall, it will be important to analyze how it can be better, and specifically ensure access for those who couldn’t engage at all. It’s concerning because families are regressing.
-Some parents supporting their children, sometimes more than one child, with ID/DD have been home, receiving limited remote learning from the schools, and no Section 28 services at all – neither in-home nor remotely. It has been difficult to put it mildly. Many parents are concerned about continuing in this manner through the summer and into fall, with their mental health suffering – both the children and their families. Funds for services need to increase to ensure that when things open, individuals and their families can get the services they need immediately and appropriately. School districts need increased funding as well to help students in Special Education far better than the efforts made. The school districts have done an incredible job with their efforts with the resources they have; however, many kids need one-on-one support and that’s hard to provide through remote learning. There needs to be more creative ideas.
Senator King: That’s very helpful. Let me give you some thoughts. I know DOE Commissioner Pender Makin is deeply engaged in this issue. This hit so fast, everyone was scrambling. Maine led the country in getting online education access for students who didn’t have access to broadband. It was quite an achievement. But I think clearly you ought to share your survey with her and her office. Maine is a local control state, Maine DOE can provide resources and guidance, but the ultimate decision about re-opening will be made at the district level. I know Pender personally; she’s dedicated and good-hearted. This is an area to which attention needs to be paid. We don’t know what the fall holds, whether schools will be able to open, or if kids will still be learning virtually, and what accommodations can be made for kids with special needs. We’re lucky to be in a state with a Governor and DOE Commissioner so attuned to the needs of young people. You have all highlighted one of the major challenges – you want one-on-one support and direct contact, but you don’t want to spread the disease. That’s the conundrum we’re facing especially in the fall. I’m worried about the fall. Many people across the country have moved on and are acting as if the virus is over, and it isn’t. Twenty-three (23) states are seeing a serious up-tick; there were twenty (20) states that have seen double digit increases over the past week alone. It’s not over. As the summer moves on and more people visit, we’re at risk. We have half the number of cases as New Hampshire has, but that could change. This is a tough, complicated situation. Maybe there could be individual Zoom calls or Facetime at the end of the normal school day. I know DOE is thinking about it and many districts have done a remarkable job.
-Parents with adult children living in group homes/independent care facilities (ICFs) shared their experiences amid the pandemic. Parents expressed their serious concerns about their children being exposed to the virus, specifically from staff from multiple agencies coming in who are also working in multiple homes. Concerns were expressed regarding the potential for an increase in cases, and specifically outbreaks in congregate settings. Support staff for these homes are titled “Direct Support Professionals”, but they do not make a professional wage. They have to have advanced skills to work with people with disabilities. This presents many different layers of concern.
Senator King: I understand that and there are a lot of things about which we need to contemplate. Please don’t forget my message about putting pressure on Senators across the country; if we don’t, those wages and rates won’t go up. That’s the fiscal reality for the next twelve (12) months. What really bothers me is that the federal government let us down in terms of preparing for what’s coming next. We gave up three (3) months in good faith to control the spread of the disease, the economy collapsed, and that time should have been used by the Administration to develop a fantastic plan for reopening. Instead, it was punted to the Governors who were told they have to handle this and fly blind. The key to reopening safely is massive testing, amounting to two to three million tests per day; we’re nowhere near that currently. I feel like we had a contract with the Administration, and they didn’t follow through. And now here we are, places are reopening while twenty-three states have increased rates of positive tests. I hope it starts to decline this summer, but the indications I’ve seen are that’s not the case and it would be tragic to have to shut everything down again in the fall.
-Parents and providers stressed the difficulties with staff retention and hiring. Some providers had numerous vacancies prior to the pandemic; COVID-19 drastically exacerbated an existing workforce crisis, greatly increasing the challenges maintaining these critical services. Many expressed concerns about whether provider agencies will be able to withstand the financial hardships imposed by the pandemic.
Senator King: There is still about $100 billion of CARES Act money yet to be allocated. One issue is that it’s been difficult for us to tell how the Administration has been distributing the funding. We know they’ve been trying to hit the hot spots, but where the money is going or what their plans are remains vague. I would urge you to stay in touch with my office. And if ICFs aren’t getting that money, they should be. Perhaps it’s a question of making DHHS aware. That’s an important message for us to take back because there is money that hasn’t been allocated. I appreciate what’s going on here and the work that all of you are doing.
Cullen: Thank you very much for your time, Senator King, this was a treat. Thank you for listening to these stories. But more than anything, thank you for all of your advocacy on behalf of people with ID/DD. The HEROES Act, passed in the House, has a lot of important funding requests that would dramatically change the lives of people with ID/DD for the better. It would provide additional funding for states which as you stated would assist Maine to weather revenue shortfalls. It would also include substantial funding for Section 8 rental assistance and funding for affordable housing development which are imperative for people with ID/DD to have access to housing so they can be included as part of their communities.
Senator King: The most important thing you call can do right now is contact friends and family in other states to advocate for something akin to the HEROES Act in the Senate, because it’s not happening and I’m very worried my colleagues will say this is over, we can’t spend more money, let’s move on. This would be both a human tragedy and economic tragedy. I want to thank all of you; what you’re doing for your children is remarkable. It’s been great to be with you this afternoon. Please keep in touch. Keep in touch with Teague, and Megan, and me. We need to know what’s happening on the ground. It’s wonderful to have this time with you and appreciate it greatly.
Cullen: Thank you very much Senator King, for being here and for all you do. I want to thank everyone who took time to share your stories as well.
End Presentation (round of applause)
Featured Speaker: Mark Kemmerle, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: MDSOAB Annual Forum – feedback for DHHS, including feedback on the availability, accessibility, and quality of services for persons with intellectual disabilities or autism and their families.
Cullen: Each year the MDSOAB holds community forums across the state to pull people familiar with and/or receiving services together to provide input on how services are working well, how they could be improved, and provide general feedback. Today we have Mark Kemmerle, Executive Director of the MDSOAB. I want to welcome you and thank you for being here. This forum is designed to start a dialogue. This year will very similar to last year’s MDSOAB annual forum, with a handful of identified questions/prompts on which the group will focus and comment. We want you all have Mark’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well.
Mark Kemmerle: OADS submitted a Reform Grid to the Legislature along with their comments on LD 1984 (“An Act To Eliminate Waiting Lists for Home and Community-based Services for Adults with Intellectual Disabilities, Autism, Brain Injury and Other Related Conditions”). The Reform Grid was divided into four (4) sectors. Also, OADS kindly shared with the MDSOAB a draft of their 2020 Annual Report to the Legislature, which is somewhat similarly organized. I’d like to use these documents to provide a framework for this year’s MDSOAB Listening Session, specifically the four (4) initiatives discussed by OADS for FY21/22.
Forum Discussion: The following includes a numbered/bulleted list of initiatives and questions for consideration. The direct feedback generated from attendees follows each prompt, and is italicized, with any responses to questions/comments indented and identified by the speaker, as relevant.
OADS Reform Grid
1. Community Membership
a. Implement HCBS settings rule – How familiar are you with the home and community-based services (HCBS) settings rule? Are you aware of the changes likely to come from this? The nature of the transition is concerning. It appears there will be some significant guidelines that might be difficult to meet. There are concerns about how that transition is going to play out. As Maine is paddling as quickly as it can to make it to the shores of compliance, in order to preserve the Federal match money, many of the details are flying by. The HCBS Settings Rule provides a terrific opportunity to discuss what we want services to look like in the future. Before we transition to the HCBS settings rules, Maine needs to address the services or lack of services to individuals who have significant behavioral issues. Providers serving people with behavioral challenges are paid less than other providers for the same service. We also need to address the 40 or more people who reside out of state receiving behavioral services that we cannot provide in Maine. Most families don’t know what’s going on with the settings rules. It would be great if there was an on-going public forum to discuss this process with families because it will impact so many of us. It will make the transition more successful if more people are aware of how it is evolving.
b. Focus on better transition to adult services – If your family member has recently transitioned to adult services: How did that go? What, if anything, would help create a better transition to adult services? When my son transitioned to adult services, there was about a year after high school with no services. Then, when he received an offer from the waitlist, staff couldn’t be found to provide the services. It was a time of high anxiety, it was incredibly challenging, and it speaks to the lack of funding and the challenges about finding staff. It was honestly the worst time in our lives. Agencies couldn’t find and/or retain staff because there were higher-paying jobs in the tourist industry on the mid-coast. Having worked in public schools, transition for students with significant disabilities to adult services, effective communication between school-based case management, children’s case management, and adult case management was usually sorely lacking. It’s very important for effective case management in all those areas to happen, and that the communication between those case managers happen to guide families through the process. True care coordination for people with ID/DD doesn’t exist, and it could really help with the transition from children to adult services. This year with COVID-19, families aging out are the families that were forgotten about, transition plans dropped, there was no follow-through, etc. When people are transitioning and they’re getting some services, it would be helpful to keep track of how they’re doing. For some people, just having some services might be okay, but for others this might put them in dire circumstances. It’s important not to think of numbers because these are people’s lives, and their daily needs aren’t being met. Matching people’s needs to services is essential; services ought to be driven by the need. We struggled with the lack of transition support from our school. I needed to find a good case manager and honestly, I often felt that I knew more than the case managers we were working with. I think there are many situations where others will not have any idea where to turn for their adult child and if the case managers are not well versed in the rules and constant changes, then everybody is lost. Effective transition from school-based to adult services for individuals with ID/DD is highly dependent on good communication, detailed planning, and effective collaboration among school personnel, children and adult case managers, Voc Rehab, local agencies and service providers, as well as various community members. Individuals, parents, and families require good information and effective facilitation throughout this confusing and overwhelming transition period.
c. Improve opportunities for employment – Voc Rehab kept dropping the ball, and everything has been reliant on families doing employment outreach. This area needs a lot of focus. When people are exploring employment, it seems the service system is very rigid. Communication between the different services would be wonderful. I was a job coach at Maine Med Voc Rehab services; it was hard for us as an agency to get the Department to send the referrals and do what we needed in order to help our individuals. The State pushes employment first, but it doesn’t feel that way in practice. Outreach to employers would be advantageous. Quicker transitions from school to adulthood will help opportunities for employment. Basic needs have to be met before the rest can be figured out. More education needs to be disseminated to businesses about the capabilities of these individuals. Many hear "disability" and shut down. An educational campaign is a great idea.
d. Address longstanding issues in transportation – Have you thought about solutions to the problems that have been encountered with transportation? Transportation will become an even larger barrier as we transition with the HCBS Settings Rule. We serve a lot of people in wheelchairs and people with behavioral challenges. Behavioral services are not reimbursed in Maine, and there’s a very limited number of vehicles that transport people in wheelchairs that allows them to access the community. There ought to be a separate transportation committee that looks at this as part of the HCBS Settings Rule. You can’t get people into the community if there isn’t transportation and there isn’t funding for it. LogistiCare has lost many of the transportation providers that it had, however inadequate they were, before COVID-19 happened. There will be very few chances for people to get transportation when they need it.
2. Quality Assurance (QA) and Quality Improvement (QI)
a. New QA positions to monitor outcomes
Betsy Hopkins: I just wanted to highlight that we did not get new QA positions; we repurposed other positions to take on the role of QA. We want to hear what makes quality programs. The QA positions have been very important to us, in trying to provide support to agencies in various ways. Currently they are working very closely with the CDC on pandemic-related issues. We would like them to be able to transition into doing regular QA supports post-pandemic.
b. More quality monitoring of providers
c. Develop metrics for value-based payment – What do you think makes up a quality program of community-based services? What do you think are the benchmarks of quality services? When we talk about quality assurance, the basic rough layout of services from childhood, to school, to adult is a person-centered process. That concept is wonderful and should be used. The problem is, the system currently falls back into the old square peg, round hole scenario – that is not going to translate to quality services. The clients, guardians, and families are provided a grievance process to ensure quality services. However, that grievance process is fraught with problems. Grievances ought to be heard by a private third-party, not DHHS. What defines quality services is dependent upon the individual. I’d like to see quality supports for individuals as opposed to the agencies. Employing people who have their heart in the work and paying them enough will aid in providing quality services. People are happy and feel like they’re connected with their community are measures of quality services. Safety is important too. QA positions contacting family members as well as individuals would be helpful – a commitment that QA positions will gather information from families to determine quality, in addition to service providers. Maybe putting out the success stories they’re finding would be helpful to everyone. Valued outcomes that focus on the person’s aspirations. Stop treating guardians as people who need to be watched. People need opportunities in the community to try new things, to learn and grow. There needs to be resources, flexibility, and lack of stigma so those opportunities exist. Quality services need committed staff members who take pride in their work, and person- and family-centered plans that are individualized. Flexibility in the rules is key to meet people’s needs. Allow guardians to be hired. Training that helps people have the skills they need to learn, grow, and enjoy active lives within their communities. Consistent, well trained, dedicated staff helps people have quality lives.
3. Innovation
a. Crisis services – increased focus on prevention – Have you ever needed crisis services, and if so, what was your experience with crisis services?
Mark: OADS has talked about moving to preventing crises. We’ve focused on the number of crisis beds, and how there are no longer anywhere near 24 crisis beds in the system. The Department has made every effort to provide emergency transitional housing, while using crisis staff to prevent crises. This seems to be a reasonable approach.
The system would better serve folks if they didn’t need to spend time in the emergency room. LD 1486 (“An Act To Strengthen Supports for Adults with Intellectual Disabilities or Autism in Crisis”), was a bill that took a good look at crisis services. Unfortunately, that legislation got watered down. Originally the bill looked at a step-up, step-down approach, which would have provided a continuum of crisis services commensurate with need. There are still many gaps in crisis services, and we could stand to revisit some of those things that were important in that piece of legislation. The system was supposed to deescalate individuals and place people back into their residential settings, and there were supposed to be behavioral add-on rates attached to that. Crisis services have had some attention, but nothing has been done with the behavioral add-on, and the lack thereof continues to be an issue. There are more than forty (40) people receiving out-of-state services between Massachusetts, Florida, and Rhode Island that Maine pays for because Maine does not have the capacity to serve them, predominantly due to behavioral challenges. It might be prudent to look into what’s being paid for this. It would be advantageous to reinvest this into Maine as a behavioral add-on. Crisis prevention is critical, because people without relationships with the person struggling can't come into a crisis situation and be effective in diffusing it. Waiting lists for Section 21 and 29 waiver services are forcing clients, guardians, and families into crisis. Case managers are encouraging reportable events and crisis services as the path to funded services (getting a waiver offer). Perhaps begin with a survey of waiting list clients on what services they each need immediately to avoid crisis.
b. More kinds of support for families
c. Increased options for shared living – My wife and I are both certified DSPs, co-own our home, contracted with an oversight agency to provide shared living, and have done everything we’re supposed to do. Our sons want to live here, in the only home they’ve ever known. The Department denied our request to be their shared living provider. This request was in line with the HCBS Settings Rule, two years before it was on the radar. I heard the K waiver was going to open shared living to two or three members. What does expanding shared living truly mean? I would like to see more ideas brought to the table regarding expanding the shared living box. The expansion of shared living is not paying fairly, and neither is respite. Perhaps the self-directed waiver might open the door for more shared living options/settings, many of which might be less expensive. There are many ways to support people in the home.
d. Promoting self-direction
e. Selection of a standard assessment tool
f. Innovation – alternative to money – Many people with ID/DD interacted and developed relationships with other kids at their high schools. Some type of high school mentorship program might be a creative way to support people well, while utilizing naturally formed relationships. It could be helpful to get high schools to do more of that. Maine has a new chapter of Best Buddies, which does this. Our school department has a similar buddy program, which starts earlier in their schooling. However, this premise depends on the kids; as the kids get older, they develop their own interests and go other ways.
4. Communication.
a. Establish strong working relationships with external stakeholders
b. Improve data reporting and data sharing
c. Provide redundant channels of communications to better serve all – Do you feel like OCFS and OADS communicates well with you? What, if anything could be improved? Both children’s and adult case managers, who have any degree of experience in those roles, bring a lot to the table in terms of being on the front lines of seeing what is and is not working for individuals and families. I would advocate for them being more involved in the MDSOAB, and other venues allowing them to communicate where they see the system working, the challenges, and feedback for how things could work better. Letters from DHHS – the correspondence is repetitive and hard to understand. Communication from and with the Department has been more open in recent years, but it could definitely improve. As a guardian, I have had many conversations with OADS. I brought many issues to their attention a year and a half ago which I was told would be reported to program integrity. I’ve never heard anything more from them. I will say the communication needs to be better. When you call and ask one question to three different people, you may get three different answers. We get overwhelmed with state, SS, SSI, MaineCare, etc., mailings every week—many of which are hard to understand. Updated information on DHHS’ and OADS’ websites would be helpful. The calling process could be far improved. When you call you can expect to wait an hour, and then sometimes get disconnected. If the letters were clearer, there would be less need for people to call and get questions answered over the phone (more staff time). Transparency would be nice. Communicate what services are available in a clear and simple document, including the pros and cons of each. Open question: Is there anything you would like to bring up to inform the discussion of how things are going in the service system? I am very concerned with ICF oversight.
-It was asked if the MDSOAB would be holding additional listening sessions, such as with SUFU.
Mark: Last year we had three listening sessions and could travel across the state. We’ll figure out how to reach out to include other voices as well, including SUFU.
Cullen: We will be sure that all of feedback provided today, both spoken and in the chat box, is incorporated into the minutes and given to Mark for the MDSOAB. If people have additional feedback on how things are working and how things could be improved please email Mark ([email protected]). Thank you, Mark, for being here today!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services: We are still holding our weekly stakeholder meetings, every Tuesday from 3-4pm through Zoom; there is a link on our website for more information. As of Friday, we had 75 individuals we serve who have tested positive for COVID-19, and very sadly we have had three people pass away. As many have read, there have been some changes around testing in congregate settings. We expanded testing to include universal testing when there was one test within a facility to come back positive. However, there have been a few challenges with that. The plan was to start universal testing in nursing facilities, then expand to other congregate settings. We’ll share more information as that moves forward. We support that practice, but it’s important to remember that when we move to universal testing more staff will test positive, which will lead to more challenges with staffing capacity. As we move forward with our prevention and control plan, we do have our QA staff reaching out and providing support to agencies as COVID-19 cases are found. The Appendix K Operational Guidance for HCBS Waivers document is online, and outlines everything approved in the Appendix K Waiver. More OADS COVID-19 updates and related information can also be found on our website. CMS (Centers for Medicare and Medicaid Services) did approve our Initial Statewide Transition Plan, so that was a big piece of news for us, about which we’re excited. We do want to reengage in our reform plan work. There will be more communication coming out about the workgroups as well.
[Governor Mills released an update about additional capacity for testing while the meeting was in progress: Today, DHHS is issuing a standing order allowing most people in Maine with elevated risk to get a COVID-19 test without the need for a separate order from a health care provider. This means individuals can seek testing even if they don't have a primary care provider or a written order from a clinician if they face a higher risk of exposure, with or without experiencing symptoms. This could include: Health care workers and first responders, seasonal and migrant farm workers, people experiencing homelessness, visitors from other states with a higher prevalence of the virus, and employees of congregate living facilities such as nursing homes, lodging establishments, grocery stores, and other businesses who have direct, daily contact with the public.]
Disability Rights Maine (DRM) Update:
Staci Converse: We are moving a lot of our trainings online, including voting training, general advocacy training, and assistive technology training. We continue to do telephone outreach with people and many people continue to struggle with restrictions due to COVID-19.
Federal & Housing Updates:
Cullen: Congress and the Administration have taken measures regarding the COVID-19 pandemic. Three stimulus packages have been signed into law, with Congress currently in negotiations on a fourth stimulus package, the timing of which remains up in the air – some are saying that a fourth package may not be voted upon until after the election – even early winter. The Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, that Senator King spoke to earlier, would provide nearly $1 trillion to state and local governments to avert layoffs and $200 billion in hazard pay for essential workers. It also includes $1,200 direct payments to individuals. The legislation includes $100 billion in emergency rental assistance and more than $24 billion in other HUD funding, stressing the importance of Section 8 especially at this time. The Senate also released its phase four stimulus package, the “SMART” Act. Senator Collins along with Senators Bob Menendez, Bill Cassidy, Joe Manchin, Cory Booker, and Cindy Hyde Smith, introduced the State and Municipal Assistance for Recovery and Transition (SMART) Act, which would provide $500 billion in direct aid to state and local governments impacted by the pandemic. This would provide at least $2 billion to state, county, and municipal governments in Maine for coronavirus relief. In addition, the $1.25 billion already allocated to Maine through the CARES Act would become more flexible. There is a push from advocates across the country for the fourth stimulus package 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). We’ve been in contact with Maine’s Delegation advocating for these critical resources, which would have a substantial positive effect on Maine’s affordable housing capacity. I want to offer my continued thanks to Maine’s Congressional Delegation because they continue to be champions for what Maine needs amid the COVID-19 pandemic.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): The Joint Standing Committee on Appropriations and Financial Affairs met on 5/29 and 6/5 to review items related to the pandemic and its effect on Maine, specifically its economy and different business sectors. Several other committees now have plans to meet, including the Health and Human Services (HHS) Committee, which will meet on Friday 6/12 at 9:30am, where it will receive a full briefing from DHHS Commissioner Lambrew.
The next meeting will be on Monday, August 10, 2020, 12-2pm, via Zoom.
Featured Speaker and Topic: TBD
**Please note there will not be a meeting on 7/13**
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.
Special guest: The Honorable Senator Angus King Jr. (Senator King graciously and thoughtfully reached out with the desire to check in with families of children with special needs, especially during this pandemic).
Cullen: Welcome and thank you very much for taking time to meet with us Senator King; this is a truly wonderful opportunity! You have a group of people here who are mostly parents, but also some providers of services, advocates, family members, people who are involved in Special Education, people who assist people with intellectual and developmental disabilities (ID/DD) transition from youth to adulthood, folks from the Maine Parent Federation, and numerous other advocates including Disability Rights Maine and the Maine Developmental Disabilities Council. This coalition provides a great opportunity for all of us to come together and see what’s going on in the world for people with ID/DD, help improve the system, and provide a clearinghouse of information for individuals and family members. It’s a pleasure to have you here, Senator King. In May of 2017, you gave a floor speech in the Senate regarding proposed cuts to Medicaid and how these cuts would have a devasting effect on people with ID/DD in Maine. One thing you said specifically stuck with me: “What happens when we make these cuts? What happens to Lidia? What happens to Dan? Who will speak for them? I will – and I hope this body will." You have stood by these words, and to this day this speech fills us all with pride, hearing you very eloquently and articulately state the needs of people with ID/DD, and why those needs are extremely important to address. Throughout your time in the Senate we’ve appealed to you for on a variety of issues, including ensuring Medicaid stays adequately funded so that people with ID/DD can receive adequate services to remain safe and be included in their communities. And, we’ve discussed the importance of Section 8 and housing development, so people have safe, affordable places to live in their communities. I want to thank you for all of your leadership in the Senate. You have been a voice and a steadfast champion for this population, and we are extremely grateful. Thank you for coming to speak and listen to this group!
Senator King: Thank you for having me. Truly, I’m here to listen to you all. There’s a lot of knowledge and expertise in the people around the table. I really do want to listen. You know how I feel, where my commitment lies. I worry a little bit, although it’s not being overtly discussed, that Medicaid is always a target. That some people in Congress and the Administration will think that we’ve spent too much on Coronavirus and we need to cut back, which may provide an excuse for some to target Medicaid. I’m not predicting it or trying to scare people, but there are always people wanting to cut back on people’s healthcare coverage. It strikes me that parents of people with disabilities have experienced unprecedented challenges recently. This winter and spring have to have been extremely difficult because of the lockdown, the fact that the schools weren’t open, the whole idea of distance learning which works for many people but not for others, the limitations on childcare, all amid a pandemic. All of the problems of the last several months I’m sure have fallen particularly hard on parents of people with ID/DD. I understand that may be the case and am interested in seeing if I’m right about that, and if so, what we can do. The big question is what’s going to happen in the fall – will schools re-open, or will people still be practicing distance learning? Will there by shifts at schools, will teachers wear mask, etc.? In Maine, it’s a local decision. The Maine DOE (Department of Education) is trying to provide the best guidance it can and is actively working on what they will do in the fall. It will ultimately be up to people in the state in how they handle this and what they decide to do. I want to hear what the experience has been, where the barriers have been in the federal government’s response, and where we might look to provide some additional help.
Discussion:
-A parent stated that she hasn’t seen her son, who is non-verbal and lives in a group home, since the pandemic started. One of her son’s housemates and staff have recently tested positive for COVID-19, adding an additional layer of stress, concern, and fear for her son’s safety. On top of the pandemic, there was already a workforce crisis in Maine, with the rates paid to the Direct Support Professionals (DSPs) who provide direct care to people with ID/DD not close to commensurate with the expertise and skills needed to perform the job, which is essential to quality of life for this population. There has been some support from the State regarding recognizing the need to increase DSP rates, and including a rate increase in its recently approved Appendix K Waiver. However, it does not come close to covering the costs associated with a professional wage and the increased PPE (personal protective equipment) needed to safely perform the job amid the pandemic. People with ID/DD often quickly lose the skills that they have worked for years to build when they lose their staff and/or there are large changes to their daily routines. What will happen to people’s skill sets when this pandemic concludes? People will likely need increased services in order to gain the ground lost during the pandemic. People with ID/DD ought to be a priority population for both state and federal funding. These are critical services people depend upon to lead their daily lives in the best of times, let alone during a pandemic.
-Many parents spoke of their experiences during the pandemic – specifically the extreme challenges associated with many home and community-based services not being available, with parents and family members having to become their loved ones’ complete caregivers – overnight. Not only is it challenging, it is also all-encompassing and exceptionally tiring. Many stated that everyone is doing the best they can to get by in this time and look forward to provider agencies being able to be provide services again. Many expressed their concerns that some agencies won’t be able to come through the pandemic on the other side, due to the extreme financial hardships faced, on top of their loss of staff due to low wages. This loss of staff translates to loss of expertise as well.
Senator King: The loss of staff is very concerning. You all have touched on something important: Medicaid reimbursement rates. The State is being hammered right now by COVID-19’s effect on revenues. Communities all over Maine are starting to have to lay off or furlough staff, they’re building in vacancies for their next fiscal year budgets. My urging to you: Please, in the next few days be in touch with your friends and colleagues in other states, to tell them to be in touch with their Senators expressing that aid to the states is an urgent problem. Right now in the Senate, Majority Leader McConnell doesn’t think it's urgent, therefore we’re not addressing it. The State of Maine is in fairly decent shape through the end of the fiscal year, which ends in three weeks. However, next year doesn’t look good at all; the State must balance its budget and if revenues collapse the only recourse is budget cuts. The two biggest spending programs in Maine are general purpose aid for education and Medicaid. Cuts in those areas would be tragic. There needs to be another round of COVID-19 assistance. I’m a little afraid people will say the pandemic is over, let’s move on, we don’t have to do anything further. But we do. That’s my strong urging today. You don’t need to call me, I’m already with you, but we do need some serious advocacy around the country around this critical issue.
-Parents of younger, school-aged children with ID/DD provided insight into the challenges they are facing during the pandemic. Maine Parent Federation, Autism Society of Maine, and the Maine Developmental Disabilities Council recently conducted a survey regarding families’ experiences with virtual learning and their hopes for the fall. Parents and families responded stating they would like their children to receive more one-on-one time with educators, whether that occurs in-person or via Zoom meetings. There is a population of children with ID/DD who were completely unable to access distance learning, even with all the efforts made by the school departments. When the pandemic hit, many school-aged children with disabilities lost connections to education, as well as their in-home and community-based supports. Those families were left with trying to provide an education for their children, their home and community support services, on top of working themselves. With distance learning, computers became triggers for children, behaviors increased, and some families felt they were at risk, especially families with more than one child. Trying to navigate the circumstances without supports became increasingly difficult. If virtual learning is continued in the fall, it will be important to analyze how it can be better, and specifically ensure access for those who couldn’t engage at all. It’s concerning because families are regressing.
-Some parents supporting their children, sometimes more than one child, with ID/DD have been home, receiving limited remote learning from the schools, and no Section 28 services at all – neither in-home nor remotely. It has been difficult to put it mildly. Many parents are concerned about continuing in this manner through the summer and into fall, with their mental health suffering – both the children and their families. Funds for services need to increase to ensure that when things open, individuals and their families can get the services they need immediately and appropriately. School districts need increased funding as well to help students in Special Education far better than the efforts made. The school districts have done an incredible job with their efforts with the resources they have; however, many kids need one-on-one support and that’s hard to provide through remote learning. There needs to be more creative ideas.
Senator King: That’s very helpful. Let me give you some thoughts. I know DOE Commissioner Pender Makin is deeply engaged in this issue. This hit so fast, everyone was scrambling. Maine led the country in getting online education access for students who didn’t have access to broadband. It was quite an achievement. But I think clearly you ought to share your survey with her and her office. Maine is a local control state, Maine DOE can provide resources and guidance, but the ultimate decision about re-opening will be made at the district level. I know Pender personally; she’s dedicated and good-hearted. This is an area to which attention needs to be paid. We don’t know what the fall holds, whether schools will be able to open, or if kids will still be learning virtually, and what accommodations can be made for kids with special needs. We’re lucky to be in a state with a Governor and DOE Commissioner so attuned to the needs of young people. You have all highlighted one of the major challenges – you want one-on-one support and direct contact, but you don’t want to spread the disease. That’s the conundrum we’re facing especially in the fall. I’m worried about the fall. Many people across the country have moved on and are acting as if the virus is over, and it isn’t. Twenty-three (23) states are seeing a serious up-tick; there were twenty (20) states that have seen double digit increases over the past week alone. It’s not over. As the summer moves on and more people visit, we’re at risk. We have half the number of cases as New Hampshire has, but that could change. This is a tough, complicated situation. Maybe there could be individual Zoom calls or Facetime at the end of the normal school day. I know DOE is thinking about it and many districts have done a remarkable job.
-Parents with adult children living in group homes/independent care facilities (ICFs) shared their experiences amid the pandemic. Parents expressed their serious concerns about their children being exposed to the virus, specifically from staff from multiple agencies coming in who are also working in multiple homes. Concerns were expressed regarding the potential for an increase in cases, and specifically outbreaks in congregate settings. Support staff for these homes are titled “Direct Support Professionals”, but they do not make a professional wage. They have to have advanced skills to work with people with disabilities. This presents many different layers of concern.
Senator King: I understand that and there are a lot of things about which we need to contemplate. Please don’t forget my message about putting pressure on Senators across the country; if we don’t, those wages and rates won’t go up. That’s the fiscal reality for the next twelve (12) months. What really bothers me is that the federal government let us down in terms of preparing for what’s coming next. We gave up three (3) months in good faith to control the spread of the disease, the economy collapsed, and that time should have been used by the Administration to develop a fantastic plan for reopening. Instead, it was punted to the Governors who were told they have to handle this and fly blind. The key to reopening safely is massive testing, amounting to two to three million tests per day; we’re nowhere near that currently. I feel like we had a contract with the Administration, and they didn’t follow through. And now here we are, places are reopening while twenty-three states have increased rates of positive tests. I hope it starts to decline this summer, but the indications I’ve seen are that’s not the case and it would be tragic to have to shut everything down again in the fall.
-Parents and providers stressed the difficulties with staff retention and hiring. Some providers had numerous vacancies prior to the pandemic; COVID-19 drastically exacerbated an existing workforce crisis, greatly increasing the challenges maintaining these critical services. Many expressed concerns about whether provider agencies will be able to withstand the financial hardships imposed by the pandemic.
Senator King: There is still about $100 billion of CARES Act money yet to be allocated. One issue is that it’s been difficult for us to tell how the Administration has been distributing the funding. We know they’ve been trying to hit the hot spots, but where the money is going or what their plans are remains vague. I would urge you to stay in touch with my office. And if ICFs aren’t getting that money, they should be. Perhaps it’s a question of making DHHS aware. That’s an important message for us to take back because there is money that hasn’t been allocated. I appreciate what’s going on here and the work that all of you are doing.
Cullen: Thank you very much for your time, Senator King, this was a treat. Thank you for listening to these stories. But more than anything, thank you for all of your advocacy on behalf of people with ID/DD. The HEROES Act, passed in the House, has a lot of important funding requests that would dramatically change the lives of people with ID/DD for the better. It would provide additional funding for states which as you stated would assist Maine to weather revenue shortfalls. It would also include substantial funding for Section 8 rental assistance and funding for affordable housing development which are imperative for people with ID/DD to have access to housing so they can be included as part of their communities.
Senator King: The most important thing you call can do right now is contact friends and family in other states to advocate for something akin to the HEROES Act in the Senate, because it’s not happening and I’m very worried my colleagues will say this is over, we can’t spend more money, let’s move on. This would be both a human tragedy and economic tragedy. I want to thank all of you; what you’re doing for your children is remarkable. It’s been great to be with you this afternoon. Please keep in touch. Keep in touch with Teague, and Megan, and me. We need to know what’s happening on the ground. It’s wonderful to have this time with you and appreciate it greatly.
Cullen: Thank you very much Senator King, for being here and for all you do. I want to thank everyone who took time to share your stories as well.
End Presentation (round of applause)
Featured Speaker: Mark Kemmerle, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: MDSOAB Annual Forum – feedback for DHHS, including feedback on the availability, accessibility, and quality of services for persons with intellectual disabilities or autism and their families.
Cullen: Each year the MDSOAB holds community forums across the state to pull people familiar with and/or receiving services together to provide input on how services are working well, how they could be improved, and provide general feedback. Today we have Mark Kemmerle, Executive Director of the MDSOAB. I want to welcome you and thank you for being here. This forum is designed to start a dialogue. This year will very similar to last year’s MDSOAB annual forum, with a handful of identified questions/prompts on which the group will focus and comment. We want you all have Mark’s contact information ([email protected]) so that you can continue to provide feedback after the meeting as well.
Mark Kemmerle: OADS submitted a Reform Grid to the Legislature along with their comments on LD 1984 (“An Act To Eliminate Waiting Lists for Home and Community-based Services for Adults with Intellectual Disabilities, Autism, Brain Injury and Other Related Conditions”). The Reform Grid was divided into four (4) sectors. Also, OADS kindly shared with the MDSOAB a draft of their 2020 Annual Report to the Legislature, which is somewhat similarly organized. I’d like to use these documents to provide a framework for this year’s MDSOAB Listening Session, specifically the four (4) initiatives discussed by OADS for FY21/22.
Forum Discussion: The following includes a numbered/bulleted list of initiatives and questions for consideration. The direct feedback generated from attendees follows each prompt, and is italicized, with any responses to questions/comments indented and identified by the speaker, as relevant.
OADS Reform Grid
1. Community Membership
a. Implement HCBS settings rule – How familiar are you with the home and community-based services (HCBS) settings rule? Are you aware of the changes likely to come from this? The nature of the transition is concerning. It appears there will be some significant guidelines that might be difficult to meet. There are concerns about how that transition is going to play out. As Maine is paddling as quickly as it can to make it to the shores of compliance, in order to preserve the Federal match money, many of the details are flying by. The HCBS Settings Rule provides a terrific opportunity to discuss what we want services to look like in the future. Before we transition to the HCBS settings rules, Maine needs to address the services or lack of services to individuals who have significant behavioral issues. Providers serving people with behavioral challenges are paid less than other providers for the same service. We also need to address the 40 or more people who reside out of state receiving behavioral services that we cannot provide in Maine. Most families don’t know what’s going on with the settings rules. It would be great if there was an on-going public forum to discuss this process with families because it will impact so many of us. It will make the transition more successful if more people are aware of how it is evolving.
b. Focus on better transition to adult services – If your family member has recently transitioned to adult services: How did that go? What, if anything, would help create a better transition to adult services? When my son transitioned to adult services, there was about a year after high school with no services. Then, when he received an offer from the waitlist, staff couldn’t be found to provide the services. It was a time of high anxiety, it was incredibly challenging, and it speaks to the lack of funding and the challenges about finding staff. It was honestly the worst time in our lives. Agencies couldn’t find and/or retain staff because there were higher-paying jobs in the tourist industry on the mid-coast. Having worked in public schools, transition for students with significant disabilities to adult services, effective communication between school-based case management, children’s case management, and adult case management was usually sorely lacking. It’s very important for effective case management in all those areas to happen, and that the communication between those case managers happen to guide families through the process. True care coordination for people with ID/DD doesn’t exist, and it could really help with the transition from children to adult services. This year with COVID-19, families aging out are the families that were forgotten about, transition plans dropped, there was no follow-through, etc. When people are transitioning and they’re getting some services, it would be helpful to keep track of how they’re doing. For some people, just having some services might be okay, but for others this might put them in dire circumstances. It’s important not to think of numbers because these are people’s lives, and their daily needs aren’t being met. Matching people’s needs to services is essential; services ought to be driven by the need. We struggled with the lack of transition support from our school. I needed to find a good case manager and honestly, I often felt that I knew more than the case managers we were working with. I think there are many situations where others will not have any idea where to turn for their adult child and if the case managers are not well versed in the rules and constant changes, then everybody is lost. Effective transition from school-based to adult services for individuals with ID/DD is highly dependent on good communication, detailed planning, and effective collaboration among school personnel, children and adult case managers, Voc Rehab, local agencies and service providers, as well as various community members. Individuals, parents, and families require good information and effective facilitation throughout this confusing and overwhelming transition period.
c. Improve opportunities for employment – Voc Rehab kept dropping the ball, and everything has been reliant on families doing employment outreach. This area needs a lot of focus. When people are exploring employment, it seems the service system is very rigid. Communication between the different services would be wonderful. I was a job coach at Maine Med Voc Rehab services; it was hard for us as an agency to get the Department to send the referrals and do what we needed in order to help our individuals. The State pushes employment first, but it doesn’t feel that way in practice. Outreach to employers would be advantageous. Quicker transitions from school to adulthood will help opportunities for employment. Basic needs have to be met before the rest can be figured out. More education needs to be disseminated to businesses about the capabilities of these individuals. Many hear "disability" and shut down. An educational campaign is a great idea.
d. Address longstanding issues in transportation – Have you thought about solutions to the problems that have been encountered with transportation? Transportation will become an even larger barrier as we transition with the HCBS Settings Rule. We serve a lot of people in wheelchairs and people with behavioral challenges. Behavioral services are not reimbursed in Maine, and there’s a very limited number of vehicles that transport people in wheelchairs that allows them to access the community. There ought to be a separate transportation committee that looks at this as part of the HCBS Settings Rule. You can’t get people into the community if there isn’t transportation and there isn’t funding for it. LogistiCare has lost many of the transportation providers that it had, however inadequate they were, before COVID-19 happened. There will be very few chances for people to get transportation when they need it.
2. Quality Assurance (QA) and Quality Improvement (QI)
a. New QA positions to monitor outcomes
Betsy Hopkins: I just wanted to highlight that we did not get new QA positions; we repurposed other positions to take on the role of QA. We want to hear what makes quality programs. The QA positions have been very important to us, in trying to provide support to agencies in various ways. Currently they are working very closely with the CDC on pandemic-related issues. We would like them to be able to transition into doing regular QA supports post-pandemic.
b. More quality monitoring of providers
c. Develop metrics for value-based payment – What do you think makes up a quality program of community-based services? What do you think are the benchmarks of quality services? When we talk about quality assurance, the basic rough layout of services from childhood, to school, to adult is a person-centered process. That concept is wonderful and should be used. The problem is, the system currently falls back into the old square peg, round hole scenario – that is not going to translate to quality services. The clients, guardians, and families are provided a grievance process to ensure quality services. However, that grievance process is fraught with problems. Grievances ought to be heard by a private third-party, not DHHS. What defines quality services is dependent upon the individual. I’d like to see quality supports for individuals as opposed to the agencies. Employing people who have their heart in the work and paying them enough will aid in providing quality services. People are happy and feel like they’re connected with their community are measures of quality services. Safety is important too. QA positions contacting family members as well as individuals would be helpful – a commitment that QA positions will gather information from families to determine quality, in addition to service providers. Maybe putting out the success stories they’re finding would be helpful to everyone. Valued outcomes that focus on the person’s aspirations. Stop treating guardians as people who need to be watched. People need opportunities in the community to try new things, to learn and grow. There needs to be resources, flexibility, and lack of stigma so those opportunities exist. Quality services need committed staff members who take pride in their work, and person- and family-centered plans that are individualized. Flexibility in the rules is key to meet people’s needs. Allow guardians to be hired. Training that helps people have the skills they need to learn, grow, and enjoy active lives within their communities. Consistent, well trained, dedicated staff helps people have quality lives.
3. Innovation
a. Crisis services – increased focus on prevention – Have you ever needed crisis services, and if so, what was your experience with crisis services?
Mark: OADS has talked about moving to preventing crises. We’ve focused on the number of crisis beds, and how there are no longer anywhere near 24 crisis beds in the system. The Department has made every effort to provide emergency transitional housing, while using crisis staff to prevent crises. This seems to be a reasonable approach.
The system would better serve folks if they didn’t need to spend time in the emergency room. LD 1486 (“An Act To Strengthen Supports for Adults with Intellectual Disabilities or Autism in Crisis”), was a bill that took a good look at crisis services. Unfortunately, that legislation got watered down. Originally the bill looked at a step-up, step-down approach, which would have provided a continuum of crisis services commensurate with need. There are still many gaps in crisis services, and we could stand to revisit some of those things that were important in that piece of legislation. The system was supposed to deescalate individuals and place people back into their residential settings, and there were supposed to be behavioral add-on rates attached to that. Crisis services have had some attention, but nothing has been done with the behavioral add-on, and the lack thereof continues to be an issue. There are more than forty (40) people receiving out-of-state services between Massachusetts, Florida, and Rhode Island that Maine pays for because Maine does not have the capacity to serve them, predominantly due to behavioral challenges. It might be prudent to look into what’s being paid for this. It would be advantageous to reinvest this into Maine as a behavioral add-on. Crisis prevention is critical, because people without relationships with the person struggling can't come into a crisis situation and be effective in diffusing it. Waiting lists for Section 21 and 29 waiver services are forcing clients, guardians, and families into crisis. Case managers are encouraging reportable events and crisis services as the path to funded services (getting a waiver offer). Perhaps begin with a survey of waiting list clients on what services they each need immediately to avoid crisis.
b. More kinds of support for families
c. Increased options for shared living – My wife and I are both certified DSPs, co-own our home, contracted with an oversight agency to provide shared living, and have done everything we’re supposed to do. Our sons want to live here, in the only home they’ve ever known. The Department denied our request to be their shared living provider. This request was in line with the HCBS Settings Rule, two years before it was on the radar. I heard the K waiver was going to open shared living to two or three members. What does expanding shared living truly mean? I would like to see more ideas brought to the table regarding expanding the shared living box. The expansion of shared living is not paying fairly, and neither is respite. Perhaps the self-directed waiver might open the door for more shared living options/settings, many of which might be less expensive. There are many ways to support people in the home.
d. Promoting self-direction
e. Selection of a standard assessment tool
f. Innovation – alternative to money – Many people with ID/DD interacted and developed relationships with other kids at their high schools. Some type of high school mentorship program might be a creative way to support people well, while utilizing naturally formed relationships. It could be helpful to get high schools to do more of that. Maine has a new chapter of Best Buddies, which does this. Our school department has a similar buddy program, which starts earlier in their schooling. However, this premise depends on the kids; as the kids get older, they develop their own interests and go other ways.
4. Communication.
a. Establish strong working relationships with external stakeholders
b. Improve data reporting and data sharing
c. Provide redundant channels of communications to better serve all – Do you feel like OCFS and OADS communicates well with you? What, if anything could be improved? Both children’s and adult case managers, who have any degree of experience in those roles, bring a lot to the table in terms of being on the front lines of seeing what is and is not working for individuals and families. I would advocate for them being more involved in the MDSOAB, and other venues allowing them to communicate where they see the system working, the challenges, and feedback for how things could work better. Letters from DHHS – the correspondence is repetitive and hard to understand. Communication from and with the Department has been more open in recent years, but it could definitely improve. As a guardian, I have had many conversations with OADS. I brought many issues to their attention a year and a half ago which I was told would be reported to program integrity. I’ve never heard anything more from them. I will say the communication needs to be better. When you call and ask one question to three different people, you may get three different answers. We get overwhelmed with state, SS, SSI, MaineCare, etc., mailings every week—many of which are hard to understand. Updated information on DHHS’ and OADS’ websites would be helpful. The calling process could be far improved. When you call you can expect to wait an hour, and then sometimes get disconnected. If the letters were clearer, there would be less need for people to call and get questions answered over the phone (more staff time). Transparency would be nice. Communicate what services are available in a clear and simple document, including the pros and cons of each. Open question: Is there anything you would like to bring up to inform the discussion of how things are going in the service system? I am very concerned with ICF oversight.
-It was asked if the MDSOAB would be holding additional listening sessions, such as with SUFU.
Mark: Last year we had three listening sessions and could travel across the state. We’ll figure out how to reach out to include other voices as well, including SUFU.
Cullen: We will be sure that all of feedback provided today, both spoken and in the chat box, is incorporated into the minutes and given to Mark for the MDSOAB. If people have additional feedback on how things are working and how things could be improved please email Mark ([email protected]). Thank you, Mark, for being here today!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services: We are still holding our weekly stakeholder meetings, every Tuesday from 3-4pm through Zoom; there is a link on our website for more information. As of Friday, we had 75 individuals we serve who have tested positive for COVID-19, and very sadly we have had three people pass away. As many have read, there have been some changes around testing in congregate settings. We expanded testing to include universal testing when there was one test within a facility to come back positive. However, there have been a few challenges with that. The plan was to start universal testing in nursing facilities, then expand to other congregate settings. We’ll share more information as that moves forward. We support that practice, but it’s important to remember that when we move to universal testing more staff will test positive, which will lead to more challenges with staffing capacity. As we move forward with our prevention and control plan, we do have our QA staff reaching out and providing support to agencies as COVID-19 cases are found. The Appendix K Operational Guidance for HCBS Waivers document is online, and outlines everything approved in the Appendix K Waiver. More OADS COVID-19 updates and related information can also be found on our website. CMS (Centers for Medicare and Medicaid Services) did approve our Initial Statewide Transition Plan, so that was a big piece of news for us, about which we’re excited. We do want to reengage in our reform plan work. There will be more communication coming out about the workgroups as well.
[Governor Mills released an update about additional capacity for testing while the meeting was in progress: Today, DHHS is issuing a standing order allowing most people in Maine with elevated risk to get a COVID-19 test without the need for a separate order from a health care provider. This means individuals can seek testing even if they don't have a primary care provider or a written order from a clinician if they face a higher risk of exposure, with or without experiencing symptoms. This could include: Health care workers and first responders, seasonal and migrant farm workers, people experiencing homelessness, visitors from other states with a higher prevalence of the virus, and employees of congregate living facilities such as nursing homes, lodging establishments, grocery stores, and other businesses who have direct, daily contact with the public.]
Disability Rights Maine (DRM) Update:
Staci Converse: We are moving a lot of our trainings online, including voting training, general advocacy training, and assistive technology training. We continue to do telephone outreach with people and many people continue to struggle with restrictions due to COVID-19.
Federal & Housing Updates:
Cullen: Congress and the Administration have taken measures regarding the COVID-19 pandemic. Three stimulus packages have been signed into law, with Congress currently in negotiations on a fourth stimulus package, the timing of which remains up in the air – some are saying that a fourth package may not be voted upon until after the election – even early winter. The Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, that Senator King spoke to earlier, would provide nearly $1 trillion to state and local governments to avert layoffs and $200 billion in hazard pay for essential workers. It also includes $1,200 direct payments to individuals. The legislation includes $100 billion in emergency rental assistance and more than $24 billion in other HUD funding, stressing the importance of Section 8 especially at this time. The Senate also released its phase four stimulus package, the “SMART” Act. Senator Collins along with Senators Bob Menendez, Bill Cassidy, Joe Manchin, Cory Booker, and Cindy Hyde Smith, introduced the State and Municipal Assistance for Recovery and Transition (SMART) Act, which would provide $500 billion in direct aid to state and local governments impacted by the pandemic. This would provide at least $2 billion to state, county, and municipal governments in Maine for coronavirus relief. In addition, the $1.25 billion already allocated to Maine through the CARES Act would become more flexible. There is a push from advocates across the country for the fourth stimulus package 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). We’ve been in contact with Maine’s Delegation advocating for these critical resources, which would have a substantial positive effect on Maine’s affordable housing capacity. I want to offer my continued thanks to Maine’s Congressional Delegation because they continue to be champions for what Maine needs amid the COVID-19 pandemic.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): The Joint Standing Committee on Appropriations and Financial Affairs met on 5/29 and 6/5 to review items related to the pandemic and its effect on Maine, specifically its economy and different business sectors. Several other committees now have plans to meet, including the Health and Human Services (HHS) Committee, which will meet on Friday 6/12 at 9:30am, where it will receive a full briefing from DHHS Commissioner Lambrew.
The next meeting will be on Monday, August 10, 2020, 12-2pm, via Zoom.
Featured Speaker and Topic: TBD
**Please note there will not be a meeting on 7/13**
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].