April 8, 2019
Minutes
Minutes
Present: Jennifer Putnam, Kevin Joyce, Bob Carpenter, Margaret Cardoza, Staci Converse, Foxfire Buck, Kim Humphrey, Betsy Mahoney, Beth MyLroie, Mark Kemmerle, Jennifer Karod, Helen Hemminger, Frances Ryan, Misty Niman, Matt Brown, Paul Linet, Kathy Son, Ann-Marie Mayberry, Luc Nya, and Vickey Rand. Via Zoom – (Brunswick): Teague Morris, David Cowing, Ray Nagel, Debbie Dionne, Ali Vercoe, Colleen Gilliam. (Winthrop): Cathy Dionne. (Orono): Catherine Thibedeau. (Bangor): Misc. sites: Paul Saucier, Derek Fales, Robin Levesque, and Kathy Adams.
Jennifer Putnam introduced herself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Paul Saucier stated that unfortunately he and Derek Fales could not attend the meeting in person or stay for the meeting’s entirety due to scheduling conflicts with the Legislature. They did, however, want to ensure they attended the meeting and provided the group with an update from OADS. As such, the agenda was arranged to have this update before the featured speaker, and they arranged to attend this portion of the meeting remotely. Next month Paul will be the featured speaker, attending the meeting in person in Portland.
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Paul Saucier – Director, OADS: Thanks everyone for having us today. I want to thank the Coalition for inviting us to participate in this forum, and we intend to do that going forward. Today we have just a little bit of time for me to introduce myself to you and provide a couple brief OADS highlights. I also want to direct you to an update we posted on the website today that will provide more information.
I’ve been with OADS for a month now; I’m starting to feel settled and that I understand the scope of work that we have in front of us to make the whole system more person-centered – there’s a number of things we’re looking to do in that regard. I have a 35 plus-year history in services and supports policy across all population groups - older people, people with physical disabilities, people with ID/DD, etc. For my first job, I worked providing direct care to individuals with ID/DD in New York. This really helped to provide a strong background for my future career. When I came back to Maine, I worked for the Consumer Advisory Board, a precursor to the MDSOAB (Maine Developmental Services Oversight and Advisory Board), at which time Pineland was still open with about 300 individuals still there. My work with the Board provided me with a look at developmental services in Maine from a systems perspective. Later, I worked at the Muskie school doing a number of things, all of which was primarily policy-oriented, but included work pertaining to individuals with ID/DD. I feel pretty comfortable in my position with the background I’ve had, and I’m glad to be here. I’m looking forward to working on some of the big challenges that we all recognize that we have before us.
I wanted to formally announce that Derek Fales has agreed, on an acting basis, to fill the Associate Director of Developmental Disabilities and Brain Injury Services. We’ve been working on the position description and we expect we’ll be able to post that later this month and engage in a national search. Thank you, Derek, for agreeing to take this on in an acting capacity. Derek will talk more about the Home and Community-Based Services (HCBS) settings rule. But I want to tell you about one thing – the State has proposed to license one and two-bed homes. The proposed rule was posted last week, and comments are due May 2nd. If you’re interested or directly affected I wanted to make sure you knew about it. Under the proposed rule, one and two-bedroom homes would need to be licensed by 7/1/2020, providing a one-year transition period. However, right now it’s just a proposal. If you want to learn more about this, information is included in the OADS update posted today, including a link to the proposed rule and the ways in which you can submit public comments. (Click here for more information on the proposed licensing rule.) We’re hoping to get updates posted on the website every couple of weeks. You can sign up for email updates as well (click here for the OADS website main page, where you can enter your email address to receive news and updates from OADS).
Derek Fales: I’ve very excited to talk about the HCBS settings rule – the new rules were 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 to ensure Maine’s settings are compliant. 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. Things such as ensuring people living in a residential home have access to visitors, have access to food, etc. – essentially the settings rule ensures that people with disabilities receiving waiver services are treated like anyone else without disabilities. Part of the effort in Maine is to engage collaboratively with CMS. We’re in the early stages of seeking national expertise on the state’s HCBS transition plan to help us look at the ways in which we can review our system to make it come into compliance. We’re still in the beginning phases to make sure our team is ready, that we fully understand CMS’ expectations, and that we have the expertise from our national counterparts to make this run smoothly. Part of this process includes posting a provider guide on our website. Hopefully you’ll find this a useful tool – you can look at this guide and know if you have to make changes to the way services are delivered. This really outlines the expectations for how people with ID/DD will be supported in the community. We’re excited about that. We also have an email address for questions related to this: [email protected]. We look forward to working on this and providing additional updates as the process moves forward.
Jennifer: There was a survey of sorts in process about a year and a half to two years ago for people to look at their own services and complete a checklist about what they thought could be gaps and needs. Is that still available as well?
Derek: We’re looking at those tools. We’re engaging with a couple of national experts to ensure those tools are going to answer what CMS requires. If you follow the steps in the guide it will be very beneficial, so once the survey is released the guide will hopefully do a majority of the work, allowing you to go through the survey tool and complete it more easily.
Discussion:
-There was a question regarding the proposed licensing rules and whether or not this includes an individual’s own home, such as living with parents or privately renting.
Derek: The licensing rule would affect agency per diem, it would not affect shared living or independently rented homes.
-It was asked what Paul saw for the bigger picture for OADS, where he would like to see the Department go in the future.
Paul: The overall goal for me is to make the system more person-centered than it is currently. We have a system that responds to events rather than focusing on the needs of individuals. There are lots of challenges that are more specific – we know our crisis system doesn’t have sufficient capacity and it may not have the right kind of capacity. We know no work was done on the HCBS settings rule, so we’re years behind. On both of those, I think if we approach the work by asking “how do we make this more person-centered?” I think we’re going to come out with something better in the end.
-It was stated that there had been talk about replacing EIS (Enterprise Information System). It was asked if the work on the HCBS rule would slow that process down. It was stated that EIS is not very person-centered.
Paul: I could not agree with you more! EIS and other electronic systems used within the Department, because there are a few, are being replaced by Evergreen over a period of time, with the first of a phased roll out occurring in May. This is included in the update on our website. We’ll be working with the community as we look to populate different parts of the system. Because of more urgent needs we had, meeting waiver assurances etc., its early capabilities will allow us to track critical incidents. It will become a pretty comprehensive system for everyone.
-It was mentioned that it is fantastic to have Paul in the role of Director of OADS and around this table.
Paul: Thank you, it’s great to be here!
Featured Speaker: Kevin Joyce, Cumberland County Sheriff & President of the Maine Sheriff’s Association. Topic: The use of police intervention as a means of deescalating behaviors and crisis intervention.
Kevin Joyce: Thank you for inviting me today. And, it’s great to have Matt Brown in attendance as well. Matt has done various classes for law enforcement pertaining to people with Autism. I took this class a few years ago and it was fascinating. The Academy does not provide a lot of education about crisis intervention for people with ID/DD, people with mental health issues, and so on. The system is moving in the right direction regarding training, but it’s not sufficient. Yet, law enforcement is the default social services entity available to deal with people in crisis at 3:00 am on a Sunday. In these circumstances, you’re sending someone in who knows a lot of things, but whose expertise in dealing with these behaviors is lacking. Often times we’re going in trying to do the best we can with very little tools in our tool bag. I really think we should have more of the classes similar to Matt’s.
I often say I run the largest mental health facility and the largest detox facility in the state of Maine. I’m always banging the drum that these are people who should not be in jail, but somehow, it’s the only place available. The general public thinks when someone goes to jail that somehow their issues have been resolved upon release; that’s not the case. The average stay for the Cumberland County Jail (CCJ) is 27 days – we don’t have folks long enough to work on some of the issues that ought to be addressed. That said, we do have the ability to stabilize people for a few days or so. It’s a struggle for us. At 3:00 am, if someone has committed a crime taking care of the problem, usually an arrest, is unfortunately what happens. We need to decriminalize substance use disorder (SUD), mental health, and behavioral challenges as much as possible. Believe it or not, there are people who end up in jail because of their medical conditions. Regarding group homes, out of the 15 towns we patrol, there are a bunch of them, I think my only issue has been that sometimes we don’t know about them until there’s a call. Generally, my experience is we don’t spend a lot of time at group homes, the staff are well educated and trained. When we’re going there it’s because a crime is taking place, we’re not going there day after day. Often times it’s a “Not in my backyard” issue. I stand ready to try to help out as much as possible. If someone ends up in jail, the system has failed and we need to spend more money on services instead – there’s a better, more economical and socially responsible way of handing things.
Jennifer: Can you elaborate a little bit on what we, or anyone who is in a crisis situation, should be saying to alert the dispatcher or the police to the certain challenges faced by the individual in crisis, to keep that person out of jail and safe once the police arrive?
Kevin: Often times we’re seeing instances in which kids have locked themselves in a bedroom, and their parents are making that call to police; believe it or not we’re responding to those situations. My goal for law enforcement and corrections is Crisis Intervention Team (CIT) training. For police officers responding to these situations it’s like arriving to the scene when a plumber is needed – we’re not plumbers. You need someone who’s well-trained.
Matt Brown: This is like asking a social worker to go to a bank robbery. That’s not in our wheelhouse. Do we try to prepare ourselves for these situations? Of course, but it’s often not enough. When I was at the Academy years ago the word “mental health” wasn’t mentioned once, when it’s the vast majority of what we deal with. The police would be the last call I would make for this very reason – if you have an imminent fear that the individual is hurting themselves or others, obviously call the police, but anything short of that I would always advise asking if there are other avenues that could be taken. Because, once you introduce law enforcement into the picture it’s incredibly unpredictable. If a police officer stated that they’re being called for a parenting issue, it then sets people up to hate the police or be terrified of them. A terrified person reacts – they take off, they get combative, it’s not a good situation. We want people with ID/DD to feel safe and relieved when they see a police officer, not feel terrified. People have called police stations saying that their child is terrified of the police and asked if officers could help their child get a different viewpoint on law enforcement. This helps.
Regarding group homes, my advice to group homes was always to let the police know you’re there and facilitate those conversations. We’d have CIT trainings where we would go into the group homes for conversations with people, out of uniform, person-to-person. Police don’t have time in an emergency to contemplate someone’s perspective, but when you take the time to do that relationship work ahead of time, before a crisis, it’s unbelievable what happens. This costs nothing but time, however that is a cost for departments. Facilitating conversations where we’re listening to one another is incomparable. We had a panel discussion, and then we went to this gentleman’s group home; two weeks later I saw him and he told me that he had a crisis and the responding officer was one of the officers who was at the panel. It turns out that because he had that positive experience he went with the officer instead of being combative. I did a class in Oxford County where we went to a group home, and the staff told us about one of their local officers. The officer came to the home, met the residents, one of whom can be aggressive and self-injurious. The officer made a point to spend time with him, and now even when this individual is in a full-blown crisis, when he sees it’s that officer responding, it immediately deescalates the situation. Unfortunately, the CIT grant is very small. My hope is that DHHS will expand CIT training to allow for more classes, more instructors, and more funding so that law enforcement has the ability to pay their staff overtime to attend.
Kevin: Public events offer another venue in which this relationship work can occur. A lot of police departments across the state participate in National Night Out, which occurs on the first Tuesday in August. This is a good opportunity to bring someone who’s afraid of law enforcement to meet with officers face-to-face, where they can get on the person’s level and develop those relationships. Coffee with a Cop is another example.
Discussion:
-It was stated that there was a 60 Minutes episode which recently aired that featured the Connecticut prison, known as “the Rock,” which borrowed from a prison reform model in Germany, emphasizing rehabilitation. It was stated that this was a maximum-security prison that treated people humanely, with dignity and respect, with amazing results. It was stated that there was also a connection to Maine, as one of the inmates featured in the story was assisted while in prison to pursue basketball at the University of Maine at Presque Isle. It was a touching and eye-opening story about the ways in which prison reform can positively affect people, especially young people.
Kevin: My wife told me about this; I’m sorry I missed it. Again, that’s a transformational shift. We’ve done a pretty good job recognizing SUD, mental health, and behavioral challenges. My staff are responding primarily to behavioral challenges. We’re trying to shift that way too. We’re offering a lot of programs in the jail to try to help people as best we can. There’s a stigma that goes along with not only having mental health issues or behavioral challenges, but also being in jail – we’re trying to give people a second or third chance. In my belief, that is addressing the societal problem we have. We’re not perfect, by any means, but we’re trying.
-A self-advocate stated that she lives in a small town, where you know every person, and everyone kept pointing at this one house where there tended to be a heavy police presence. The neighbors thought it was inhabited by people recently released from jail. She stated that come to find out, they were her peers – it was a group home. She stated that the police were getting called frequently for issues which were not criminal, to the frustration of the responding officers. The neighbors began to complain about the police presence, specifically due to the provider being the one to initiate the calls. The neighbors were on the verge of contacting the media to publicly shame the provider because it was such a frustrating situation.
Kevin: Dispatchers are in a tough spot. Dispatchers relay information to police officers who then respond to the call. One of the things that come to mind as we’re talking about this is about 15 years ago we had our first School Resource Officer (SRO) at Gray-New Gloucester High School. At first, parents were horrified that a police car was parked outside of the school. Now it’s common place. Sometimes we don’t know the details of a call until the officers respond. You’re correct, if you have an agency that’s hiring people who aren’t trained well, we’ll probably be there more. It’s about the relationships and communication all around. In my career I can’t tell you how many times I went to a call because there was a bat in the house. That’s not a criminal call, but the motto is “protect and serve;” and that’s the serve part. It can be frustrating, but it’s not for us to choose the calls to which we respond. We’ll be there.
-A parent stated that her son went to Greely High School, which had an excellent SRO, whom her son really liked. She stated that her son had behavior challenges and was in and out of Spring Harbor quite frequently at the time. When he returned home he would refuse to go to school. There was such a strong relationship with the SRO, that he was actually called to see if he could assist in motivating her son to return to school. She stated that years after graduation her son still talks about this SRO. SROs are another way in which kids can be exposed to positive relationships with law enforcement.
Kevin: It’s about building that rapport, building positive relationships with law enforcement. It’s about safety and security. This is one of the more important positions, especially in regards to working with kids with ID/DD and/or mental health issues. These are people who have a profound impact on kids’ lives, as they come to that fork in the road aging into adulthood, determining what kind of person they’re going to become.
-A parent stated that when her son was in elementary school, she received a flyer saying that if they couldn’t control their child’s behavior that the school would call the police. This was very stigmatizing. She stated that her son, after running off, was brought home on many occasions in a police cruiser by kind officers. However, all too often the police are used as threats which only makes matters worse and establishes that distrust and fear of law enforcement.
Staci Converse – Disability Rights Maine: I was hoping that Paul and Derek would be able to stay for this portion of the meeting because under Maine’s regulations for people with behavior plans, it allows for the planned use of police intervention. As a community we ought to take a look at that. This might be undermining this important relationship work.
Mark Kemmerle – MDSOAB: One of the things that we’re looking at is how many behavior plans have law enforcement listed as a planned intervention. At the very least, one would think that listing this as a planned intervention ought to be done in conjunction with and through discussions with law enforcement.
Staci: Are you finding anything in what you’re reviewing about if law enforcement has been contacted per these plans?
Mark: We’re tracking whether this is a planned option for intervention. I’ve only seen three or maybe four, but I know it’s in the matrix of things we’re tracking. When we get deeper into it, it’s got to be a last resort, but for certain individuals it may be warranted, I don’t know.
Staci: I’ve also heard of instances when someone calls 911 they’re told that their phone will be taken away from them or they’ll be arrested for misusing emergency services. This might be something the MDSOAB, DRM, providers, and everyone can look at to see if there’s a better way to build those relationships, so law enforcement isn’t used as a threat.
-An educator stated that Cape Elizabeth finally hired a full-time SRO. She stated that it’s about breaking down the barriers for the SRO as well as for the students. She stated that over the years they’ve worked on creating relationships with police, fire, and EMTs, so there’s a name and face recognition, creating these lifelong relationships. They also work on students getting to know the other communities in which they might live post-graduation as well. She asked if officers have access to whether or not people have some kind of behavioral plan or some way of obtaining critical information about people to bridge that informational gap.
Kevin: Generally bringing someone to the station, which would be an arrest, happens as a last resort. It’s a lot easier going to a group home because there are staff who can provide some information, whether it’s true, accurate, etc., you make your decision based on “is the need to arrest more important than needing to mitigate this situation?” There have been cases were a staff person has been assaulted, so to resolve the problem for the time being, bringing the individual to the station might be the only option. Is this the best way? Probably not, but if you don’t have a lot of education in crisis intervention it’s one of very few options. Most of our work is trying to deescalate behaviors and look for other resolutions. As President of the Maine Sheriffs’ Association I work a lot with the Legislature. I was just up there to testify about assessment centers. At 3:00 am, the police have three viable options: Resolve the situation and hope it doesn’t become a larger problem; if a crime has been committed arrest the individual; or if a crime hasn’t been committed using the emergency room. The emergency rooms and jails – those are extremes and sometimes what you really need is something in the middle. The public hearing was about assessment centers, but it turned into a discussion about revitalizing the ACT (Assertive Community Treatment) teams. There’s a lot of demand and not a lot of supply, and when there is supply it’s not coordinated. From a law enforcement perspective, we’re struggling with what choice is right often times.
Matt: At Autism Society of Maine, we started a voluntary registration program. We try to encourage parents to give police departments information on their children and their needs. If we have that information it can be put into our system, so an officer would have the information when responding to a crisis and be equipped with the best tools for a better resolution. Knowing people’s triggers and/or calming techniques can be very helpful in deescalating a crisis. We’re asking the responding officer to diagnose the situation which is too much to ask, but some information could mitigate and deescalate the situation. I like to use the example of an officer who responded to a crisis call – he had information in advance because it was on file, so he knew the individual in crisis loved potato chips. It seems like such a small detail, but when he arrived he was able to ask the individual if he liked potato chips and it immediately deescalated the situation – they began talking about potato chips! When a crisis team arrived, they were shocked because the situation had deescalated so significantly it was no longer a crisis. A tiny piece of information can be unbelievably helpful to an officer. I tell parents that, in my opinion, police need this kind of information, because even with adequate training they’ve navigating so much in those moments. Also, training dispatchers to know what to ask to prompt people making the call is crucial too. People calling the police in the middle of a crisis have a lot going on, having dispatchers have information on file and know what to ask to prompt informational responses – such as is the individual verbal or non-verbal – is essential. (Click here for more information on Autism Society of Maine’s safety page.)
Kevin: Having this information, in a prearranged way – that’s intelligence, and we need intelligence. We also have Project Lifesaver. With this program, parents can buy a wristband for their child so if they wander off we have a way to track them. We have this tool, but it is far underutilized – I would guess that we have two people signed up for that and a maybe a handful of people who have provided information like Matt described. These are very underutilized tools.
-There was discussion regarding the lack of crisis services in Maine, specifically a lack of developmental services crisis services. It was stated that years ago there was a better system in place. Providers don’t want to call the police, but with the lack of crisis services it’s unfortunately sometimes the only option.
Jennifer: Maine also lacks stabilization beds for this population.
Kevin: When did this train leave the track?
Jennifer: Two years ago an organization who had a contract for 16 crisis beds in Maine decided they couldn’t afford to provide that service, so that contract just dropped off. That’s when things really got bad.
-It was stated that prior to the loss of those crisis beds, crisis services was still woefully inadequate – it had been much more robust years ago.
-A parent stated that long waiting lists for daily supports doesn’t help matters either, escalating situations to a crisis level.
-A self-advocate specifically asked that the minutes include a message for Paul and Derek, since they had to leave the meeting early, stating the inclusion of police intervention as a planned intervention in behavior plans, without the knowledge of or collaboration with law enforcement, is cause for further discussion. She stated that she is concerned that DHHS perhaps hasn’t communicated to the police departments that they’re part of behavior plans. Utilizing an information system such as that which has been described in this meeting, as well as prompts for dispatchers, could be very effective ways of having law enforcement be in the best possible position to assist and deescalate when called upon. She stated that funding for crisis services or police training would be advantageous.
Jennifer: Thank you for being here, Sheriff Joyce, and Matt as well, this has been a great discussion!
End of presentation.
(Round of applause)
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Luc Nya (OCFS): There isn’t much more to report since last month, but OCFS has a new Director, Dr. Todd A. Landry, starting on April 29th, which is very exciting. (Click here for the most recent OCFS update.)
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT meetings are held in Portland on the first Friday of each month. The most recent meeting was on Friday, 4/5, and featured Nell Brimmer presenting on supported decision-making (SDM). The next meeting is Friday, 5/3, and will feature John Dolan, the Director of the Apprenticeship and Strategic Partnership with the Maine Department of Labor, presenting on the Maine Apprenticeship Program.
State Legislature Update:
-There was discussion regarding the public hearing held on 3/29 for LD 984, Resolve, To Increase Funding for Children's Behavioral Health Issues in Order To Return to the State Children Who Are Currently Housed in Residential Treatment Systems outside of the State and To Suspend Certain Contracts Related to Psychiatric Residential Treatment Facilities. This bill would address the 54 kids who are in out-of-state placements.
Jennifer Putnam: There was a public hearing on 3/29 for LD 1178, An Act To Address the Needs of Children with Intellectual Disabilities and Pervasive Developmental Disorders, which would create a waiver program for children with ID/DD. The Department and the Office of MaineCare Services had a list of questions they wanted to present to the Health and Human Services (HHS) Committee; however, we met with them the evening before and they decided to hold back on expression of doubt which was promising. I received an email this morning that the children’s non-specialized services waitlist currently has 403 kids on it. This doesn’t include kids waiting for specialized services or kids getting just a fraction of what they need. We’re also watching LD 1377, An Act To Enhance and Improve the Maine Developmental Services Oversight and Advisory Board and To Establish an Independent Oversight Panel To Review Deaths of and Serious Injuries to Persons with Intellectual Disabilities or Autism, for which a public hearing has yet to be scheduled. The Department also has a bill in that would create a mortality review panel, for which an LD number is not yet available. The HHS Committee is waiting for this bill to be finalized so that the public hearings for these bills can be heard on the same day. LD 1486, An Act To Strengthen Supports for Adults with Intellectual Disabilities or Autism in Crisis, is a bill submitted by MACSP (Maine Association of Community Service Providers). This bill would direct the Department to promulgate rules around crisis services, because they’ve never been promulgated despite being statutorily mandated. Another aspect of the bill includes developing services and corresponding rates to meet the higher behavior needs of folks coming into crisis services in an appropriate fashion – allowing for services to angle up to include more intensive supports before someone gets to crisis, as well as angle down as they’re stepping down out of crisis services. All told there are about 45 bills we’re monitoring. There are so many bills out there that pertain to and would affect people with ID/DD – I have a list of bills we’re tracking, and I would encourage you all to take a look. The list includes links directly to the bills if you’d like more information as well. (Click here for the Excel version of the list of bills, click here for the PDF version of the list of bills.)
Disability Rights Maine (DRM) Update:
Stacy Converse: Our DD Advocacy program is launching a more concerted efforts at monitoring and reaching out to individuals in their homes, providing information about DRM and how we can be of assistance. Our Children’s team continues to monitor the results of the Public Consulting Group (PCG) Report, and it appears that the State is looking to contract with PCG to put together an implementation plan.
Other Business:
-A parent provided information on his experience in Texas interfacing with school districts and regional education centers, which he detailed as being positive. He stated that it would be great if the Coalition and Autism Society of Maine collaborated and advocated for funding from DHHS for an annual state Autism conference.
Cathy Dionne – Autism Society of Maine: Autism Society of Maine hosts two free conferences for families in Maine each year. The next conference will be held on November 2, 2019, in Orono. (Click here for the conference flyer.)
Handouts/Announcements/Upcoming Events
The next meeting will be on May 13, 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: Paul Saucier, Director, DHHS-Office of Aging and Disability Services (OADS). Topic: OADS Update and related discussion.
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].
Jennifer Putnam introduced herself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Paul Saucier stated that unfortunately he and Derek Fales could not attend the meeting in person or stay for the meeting’s entirety due to scheduling conflicts with the Legislature. They did, however, want to ensure they attended the meeting and provided the group with an update from OADS. As such, the agenda was arranged to have this update before the featured speaker, and they arranged to attend this portion of the meeting remotely. Next month Paul will be the featured speaker, attending the meeting in person in Portland.
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Paul Saucier – Director, OADS: Thanks everyone for having us today. I want to thank the Coalition for inviting us to participate in this forum, and we intend to do that going forward. Today we have just a little bit of time for me to introduce myself to you and provide a couple brief OADS highlights. I also want to direct you to an update we posted on the website today that will provide more information.
I’ve been with OADS for a month now; I’m starting to feel settled and that I understand the scope of work that we have in front of us to make the whole system more person-centered – there’s a number of things we’re looking to do in that regard. I have a 35 plus-year history in services and supports policy across all population groups - older people, people with physical disabilities, people with ID/DD, etc. For my first job, I worked providing direct care to individuals with ID/DD in New York. This really helped to provide a strong background for my future career. When I came back to Maine, I worked for the Consumer Advisory Board, a precursor to the MDSOAB (Maine Developmental Services Oversight and Advisory Board), at which time Pineland was still open with about 300 individuals still there. My work with the Board provided me with a look at developmental services in Maine from a systems perspective. Later, I worked at the Muskie school doing a number of things, all of which was primarily policy-oriented, but included work pertaining to individuals with ID/DD. I feel pretty comfortable in my position with the background I’ve had, and I’m glad to be here. I’m looking forward to working on some of the big challenges that we all recognize that we have before us.
I wanted to formally announce that Derek Fales has agreed, on an acting basis, to fill the Associate Director of Developmental Disabilities and Brain Injury Services. We’ve been working on the position description and we expect we’ll be able to post that later this month and engage in a national search. Thank you, Derek, for agreeing to take this on in an acting capacity. Derek will talk more about the Home and Community-Based Services (HCBS) settings rule. But I want to tell you about one thing – the State has proposed to license one and two-bed homes. The proposed rule was posted last week, and comments are due May 2nd. If you’re interested or directly affected I wanted to make sure you knew about it. Under the proposed rule, one and two-bedroom homes would need to be licensed by 7/1/2020, providing a one-year transition period. However, right now it’s just a proposal. If you want to learn more about this, information is included in the OADS update posted today, including a link to the proposed rule and the ways in which you can submit public comments. (Click here for more information on the proposed licensing rule.) We’re hoping to get updates posted on the website every couple of weeks. You can sign up for email updates as well (click here for the OADS website main page, where you can enter your email address to receive news and updates from OADS).
Derek Fales: I’ve very excited to talk about the HCBS settings rule – the new rules were 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 to ensure Maine’s settings are compliant. 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. Things such as ensuring people living in a residential home have access to visitors, have access to food, etc. – essentially the settings rule ensures that people with disabilities receiving waiver services are treated like anyone else without disabilities. Part of the effort in Maine is to engage collaboratively with CMS. We’re in the early stages of seeking national expertise on the state’s HCBS transition plan to help us look at the ways in which we can review our system to make it come into compliance. We’re still in the beginning phases to make sure our team is ready, that we fully understand CMS’ expectations, and that we have the expertise from our national counterparts to make this run smoothly. Part of this process includes posting a provider guide on our website. Hopefully you’ll find this a useful tool – you can look at this guide and know if you have to make changes to the way services are delivered. This really outlines the expectations for how people with ID/DD will be supported in the community. We’re excited about that. We also have an email address for questions related to this: [email protected]. We look forward to working on this and providing additional updates as the process moves forward.
Jennifer: There was a survey of sorts in process about a year and a half to two years ago for people to look at their own services and complete a checklist about what they thought could be gaps and needs. Is that still available as well?
Derek: We’re looking at those tools. We’re engaging with a couple of national experts to ensure those tools are going to answer what CMS requires. If you follow the steps in the guide it will be very beneficial, so once the survey is released the guide will hopefully do a majority of the work, allowing you to go through the survey tool and complete it more easily.
Discussion:
-There was a question regarding the proposed licensing rules and whether or not this includes an individual’s own home, such as living with parents or privately renting.
Derek: The licensing rule would affect agency per diem, it would not affect shared living or independently rented homes.
-It was asked what Paul saw for the bigger picture for OADS, where he would like to see the Department go in the future.
Paul: The overall goal for me is to make the system more person-centered than it is currently. We have a system that responds to events rather than focusing on the needs of individuals. There are lots of challenges that are more specific – we know our crisis system doesn’t have sufficient capacity and it may not have the right kind of capacity. We know no work was done on the HCBS settings rule, so we’re years behind. On both of those, I think if we approach the work by asking “how do we make this more person-centered?” I think we’re going to come out with something better in the end.
-It was stated that there had been talk about replacing EIS (Enterprise Information System). It was asked if the work on the HCBS rule would slow that process down. It was stated that EIS is not very person-centered.
Paul: I could not agree with you more! EIS and other electronic systems used within the Department, because there are a few, are being replaced by Evergreen over a period of time, with the first of a phased roll out occurring in May. This is included in the update on our website. We’ll be working with the community as we look to populate different parts of the system. Because of more urgent needs we had, meeting waiver assurances etc., its early capabilities will allow us to track critical incidents. It will become a pretty comprehensive system for everyone.
-It was mentioned that it is fantastic to have Paul in the role of Director of OADS and around this table.
Paul: Thank you, it’s great to be here!
Featured Speaker: Kevin Joyce, Cumberland County Sheriff & President of the Maine Sheriff’s Association. Topic: The use of police intervention as a means of deescalating behaviors and crisis intervention.
Kevin Joyce: Thank you for inviting me today. And, it’s great to have Matt Brown in attendance as well. Matt has done various classes for law enforcement pertaining to people with Autism. I took this class a few years ago and it was fascinating. The Academy does not provide a lot of education about crisis intervention for people with ID/DD, people with mental health issues, and so on. The system is moving in the right direction regarding training, but it’s not sufficient. Yet, law enforcement is the default social services entity available to deal with people in crisis at 3:00 am on a Sunday. In these circumstances, you’re sending someone in who knows a lot of things, but whose expertise in dealing with these behaviors is lacking. Often times we’re going in trying to do the best we can with very little tools in our tool bag. I really think we should have more of the classes similar to Matt’s.
I often say I run the largest mental health facility and the largest detox facility in the state of Maine. I’m always banging the drum that these are people who should not be in jail, but somehow, it’s the only place available. The general public thinks when someone goes to jail that somehow their issues have been resolved upon release; that’s not the case. The average stay for the Cumberland County Jail (CCJ) is 27 days – we don’t have folks long enough to work on some of the issues that ought to be addressed. That said, we do have the ability to stabilize people for a few days or so. It’s a struggle for us. At 3:00 am, if someone has committed a crime taking care of the problem, usually an arrest, is unfortunately what happens. We need to decriminalize substance use disorder (SUD), mental health, and behavioral challenges as much as possible. Believe it or not, there are people who end up in jail because of their medical conditions. Regarding group homes, out of the 15 towns we patrol, there are a bunch of them, I think my only issue has been that sometimes we don’t know about them until there’s a call. Generally, my experience is we don’t spend a lot of time at group homes, the staff are well educated and trained. When we’re going there it’s because a crime is taking place, we’re not going there day after day. Often times it’s a “Not in my backyard” issue. I stand ready to try to help out as much as possible. If someone ends up in jail, the system has failed and we need to spend more money on services instead – there’s a better, more economical and socially responsible way of handing things.
Jennifer: Can you elaborate a little bit on what we, or anyone who is in a crisis situation, should be saying to alert the dispatcher or the police to the certain challenges faced by the individual in crisis, to keep that person out of jail and safe once the police arrive?
Kevin: Often times we’re seeing instances in which kids have locked themselves in a bedroom, and their parents are making that call to police; believe it or not we’re responding to those situations. My goal for law enforcement and corrections is Crisis Intervention Team (CIT) training. For police officers responding to these situations it’s like arriving to the scene when a plumber is needed – we’re not plumbers. You need someone who’s well-trained.
Matt Brown: This is like asking a social worker to go to a bank robbery. That’s not in our wheelhouse. Do we try to prepare ourselves for these situations? Of course, but it’s often not enough. When I was at the Academy years ago the word “mental health” wasn’t mentioned once, when it’s the vast majority of what we deal with. The police would be the last call I would make for this very reason – if you have an imminent fear that the individual is hurting themselves or others, obviously call the police, but anything short of that I would always advise asking if there are other avenues that could be taken. Because, once you introduce law enforcement into the picture it’s incredibly unpredictable. If a police officer stated that they’re being called for a parenting issue, it then sets people up to hate the police or be terrified of them. A terrified person reacts – they take off, they get combative, it’s not a good situation. We want people with ID/DD to feel safe and relieved when they see a police officer, not feel terrified. People have called police stations saying that their child is terrified of the police and asked if officers could help their child get a different viewpoint on law enforcement. This helps.
Regarding group homes, my advice to group homes was always to let the police know you’re there and facilitate those conversations. We’d have CIT trainings where we would go into the group homes for conversations with people, out of uniform, person-to-person. Police don’t have time in an emergency to contemplate someone’s perspective, but when you take the time to do that relationship work ahead of time, before a crisis, it’s unbelievable what happens. This costs nothing but time, however that is a cost for departments. Facilitating conversations where we’re listening to one another is incomparable. We had a panel discussion, and then we went to this gentleman’s group home; two weeks later I saw him and he told me that he had a crisis and the responding officer was one of the officers who was at the panel. It turns out that because he had that positive experience he went with the officer instead of being combative. I did a class in Oxford County where we went to a group home, and the staff told us about one of their local officers. The officer came to the home, met the residents, one of whom can be aggressive and self-injurious. The officer made a point to spend time with him, and now even when this individual is in a full-blown crisis, when he sees it’s that officer responding, it immediately deescalates the situation. Unfortunately, the CIT grant is very small. My hope is that DHHS will expand CIT training to allow for more classes, more instructors, and more funding so that law enforcement has the ability to pay their staff overtime to attend.
Kevin: Public events offer another venue in which this relationship work can occur. A lot of police departments across the state participate in National Night Out, which occurs on the first Tuesday in August. This is a good opportunity to bring someone who’s afraid of law enforcement to meet with officers face-to-face, where they can get on the person’s level and develop those relationships. Coffee with a Cop is another example.
Discussion:
-It was stated that there was a 60 Minutes episode which recently aired that featured the Connecticut prison, known as “the Rock,” which borrowed from a prison reform model in Germany, emphasizing rehabilitation. It was stated that this was a maximum-security prison that treated people humanely, with dignity and respect, with amazing results. It was stated that there was also a connection to Maine, as one of the inmates featured in the story was assisted while in prison to pursue basketball at the University of Maine at Presque Isle. It was a touching and eye-opening story about the ways in which prison reform can positively affect people, especially young people.
Kevin: My wife told me about this; I’m sorry I missed it. Again, that’s a transformational shift. We’ve done a pretty good job recognizing SUD, mental health, and behavioral challenges. My staff are responding primarily to behavioral challenges. We’re trying to shift that way too. We’re offering a lot of programs in the jail to try to help people as best we can. There’s a stigma that goes along with not only having mental health issues or behavioral challenges, but also being in jail – we’re trying to give people a second or third chance. In my belief, that is addressing the societal problem we have. We’re not perfect, by any means, but we’re trying.
-A self-advocate stated that she lives in a small town, where you know every person, and everyone kept pointing at this one house where there tended to be a heavy police presence. The neighbors thought it was inhabited by people recently released from jail. She stated that come to find out, they were her peers – it was a group home. She stated that the police were getting called frequently for issues which were not criminal, to the frustration of the responding officers. The neighbors began to complain about the police presence, specifically due to the provider being the one to initiate the calls. The neighbors were on the verge of contacting the media to publicly shame the provider because it was such a frustrating situation.
Kevin: Dispatchers are in a tough spot. Dispatchers relay information to police officers who then respond to the call. One of the things that come to mind as we’re talking about this is about 15 years ago we had our first School Resource Officer (SRO) at Gray-New Gloucester High School. At first, parents were horrified that a police car was parked outside of the school. Now it’s common place. Sometimes we don’t know the details of a call until the officers respond. You’re correct, if you have an agency that’s hiring people who aren’t trained well, we’ll probably be there more. It’s about the relationships and communication all around. In my career I can’t tell you how many times I went to a call because there was a bat in the house. That’s not a criminal call, but the motto is “protect and serve;” and that’s the serve part. It can be frustrating, but it’s not for us to choose the calls to which we respond. We’ll be there.
-A parent stated that her son went to Greely High School, which had an excellent SRO, whom her son really liked. She stated that her son had behavior challenges and was in and out of Spring Harbor quite frequently at the time. When he returned home he would refuse to go to school. There was such a strong relationship with the SRO, that he was actually called to see if he could assist in motivating her son to return to school. She stated that years after graduation her son still talks about this SRO. SROs are another way in which kids can be exposed to positive relationships with law enforcement.
Kevin: It’s about building that rapport, building positive relationships with law enforcement. It’s about safety and security. This is one of the more important positions, especially in regards to working with kids with ID/DD and/or mental health issues. These are people who have a profound impact on kids’ lives, as they come to that fork in the road aging into adulthood, determining what kind of person they’re going to become.
-A parent stated that when her son was in elementary school, she received a flyer saying that if they couldn’t control their child’s behavior that the school would call the police. This was very stigmatizing. She stated that her son, after running off, was brought home on many occasions in a police cruiser by kind officers. However, all too often the police are used as threats which only makes matters worse and establishes that distrust and fear of law enforcement.
Staci Converse – Disability Rights Maine: I was hoping that Paul and Derek would be able to stay for this portion of the meeting because under Maine’s regulations for people with behavior plans, it allows for the planned use of police intervention. As a community we ought to take a look at that. This might be undermining this important relationship work.
Mark Kemmerle – MDSOAB: One of the things that we’re looking at is how many behavior plans have law enforcement listed as a planned intervention. At the very least, one would think that listing this as a planned intervention ought to be done in conjunction with and through discussions with law enforcement.
Staci: Are you finding anything in what you’re reviewing about if law enforcement has been contacted per these plans?
Mark: We’re tracking whether this is a planned option for intervention. I’ve only seen three or maybe four, but I know it’s in the matrix of things we’re tracking. When we get deeper into it, it’s got to be a last resort, but for certain individuals it may be warranted, I don’t know.
Staci: I’ve also heard of instances when someone calls 911 they’re told that their phone will be taken away from them or they’ll be arrested for misusing emergency services. This might be something the MDSOAB, DRM, providers, and everyone can look at to see if there’s a better way to build those relationships, so law enforcement isn’t used as a threat.
-An educator stated that Cape Elizabeth finally hired a full-time SRO. She stated that it’s about breaking down the barriers for the SRO as well as for the students. She stated that over the years they’ve worked on creating relationships with police, fire, and EMTs, so there’s a name and face recognition, creating these lifelong relationships. They also work on students getting to know the other communities in which they might live post-graduation as well. She asked if officers have access to whether or not people have some kind of behavioral plan or some way of obtaining critical information about people to bridge that informational gap.
Kevin: Generally bringing someone to the station, which would be an arrest, happens as a last resort. It’s a lot easier going to a group home because there are staff who can provide some information, whether it’s true, accurate, etc., you make your decision based on “is the need to arrest more important than needing to mitigate this situation?” There have been cases were a staff person has been assaulted, so to resolve the problem for the time being, bringing the individual to the station might be the only option. Is this the best way? Probably not, but if you don’t have a lot of education in crisis intervention it’s one of very few options. Most of our work is trying to deescalate behaviors and look for other resolutions. As President of the Maine Sheriffs’ Association I work a lot with the Legislature. I was just up there to testify about assessment centers. At 3:00 am, the police have three viable options: Resolve the situation and hope it doesn’t become a larger problem; if a crime has been committed arrest the individual; or if a crime hasn’t been committed using the emergency room. The emergency rooms and jails – those are extremes and sometimes what you really need is something in the middle. The public hearing was about assessment centers, but it turned into a discussion about revitalizing the ACT (Assertive Community Treatment) teams. There’s a lot of demand and not a lot of supply, and when there is supply it’s not coordinated. From a law enforcement perspective, we’re struggling with what choice is right often times.
Matt: At Autism Society of Maine, we started a voluntary registration program. We try to encourage parents to give police departments information on their children and their needs. If we have that information it can be put into our system, so an officer would have the information when responding to a crisis and be equipped with the best tools for a better resolution. Knowing people’s triggers and/or calming techniques can be very helpful in deescalating a crisis. We’re asking the responding officer to diagnose the situation which is too much to ask, but some information could mitigate and deescalate the situation. I like to use the example of an officer who responded to a crisis call – he had information in advance because it was on file, so he knew the individual in crisis loved potato chips. It seems like such a small detail, but when he arrived he was able to ask the individual if he liked potato chips and it immediately deescalated the situation – they began talking about potato chips! When a crisis team arrived, they were shocked because the situation had deescalated so significantly it was no longer a crisis. A tiny piece of information can be unbelievably helpful to an officer. I tell parents that, in my opinion, police need this kind of information, because even with adequate training they’ve navigating so much in those moments. Also, training dispatchers to know what to ask to prompt people making the call is crucial too. People calling the police in the middle of a crisis have a lot going on, having dispatchers have information on file and know what to ask to prompt informational responses – such as is the individual verbal or non-verbal – is essential. (Click here for more information on Autism Society of Maine’s safety page.)
Kevin: Having this information, in a prearranged way – that’s intelligence, and we need intelligence. We also have Project Lifesaver. With this program, parents can buy a wristband for their child so if they wander off we have a way to track them. We have this tool, but it is far underutilized – I would guess that we have two people signed up for that and a maybe a handful of people who have provided information like Matt described. These are very underutilized tools.
-There was discussion regarding the lack of crisis services in Maine, specifically a lack of developmental services crisis services. It was stated that years ago there was a better system in place. Providers don’t want to call the police, but with the lack of crisis services it’s unfortunately sometimes the only option.
Jennifer: Maine also lacks stabilization beds for this population.
Kevin: When did this train leave the track?
Jennifer: Two years ago an organization who had a contract for 16 crisis beds in Maine decided they couldn’t afford to provide that service, so that contract just dropped off. That’s when things really got bad.
-It was stated that prior to the loss of those crisis beds, crisis services was still woefully inadequate – it had been much more robust years ago.
-A parent stated that long waiting lists for daily supports doesn’t help matters either, escalating situations to a crisis level.
-A self-advocate specifically asked that the minutes include a message for Paul and Derek, since they had to leave the meeting early, stating the inclusion of police intervention as a planned intervention in behavior plans, without the knowledge of or collaboration with law enforcement, is cause for further discussion. She stated that she is concerned that DHHS perhaps hasn’t communicated to the police departments that they’re part of behavior plans. Utilizing an information system such as that which has been described in this meeting, as well as prompts for dispatchers, could be very effective ways of having law enforcement be in the best possible position to assist and deescalate when called upon. She stated that funding for crisis services or police training would be advantageous.
Jennifer: Thank you for being here, Sheriff Joyce, and Matt as well, this has been a great discussion!
End of presentation.
(Round of applause)
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Luc Nya (OCFS): There isn’t much more to report since last month, but OCFS has a new Director, Dr. Todd A. Landry, starting on April 29th, which is very exciting. (Click here for the most recent OCFS update.)
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT meetings are held in Portland on the first Friday of each month. The most recent meeting was on Friday, 4/5, and featured Nell Brimmer presenting on supported decision-making (SDM). The next meeting is Friday, 5/3, and will feature John Dolan, the Director of the Apprenticeship and Strategic Partnership with the Maine Department of Labor, presenting on the Maine Apprenticeship Program.
State Legislature Update:
-There was discussion regarding the public hearing held on 3/29 for LD 984, Resolve, To Increase Funding for Children's Behavioral Health Issues in Order To Return to the State Children Who Are Currently Housed in Residential Treatment Systems outside of the State and To Suspend Certain Contracts Related to Psychiatric Residential Treatment Facilities. This bill would address the 54 kids who are in out-of-state placements.
Jennifer Putnam: There was a public hearing on 3/29 for LD 1178, An Act To Address the Needs of Children with Intellectual Disabilities and Pervasive Developmental Disorders, which would create a waiver program for children with ID/DD. The Department and the Office of MaineCare Services had a list of questions they wanted to present to the Health and Human Services (HHS) Committee; however, we met with them the evening before and they decided to hold back on expression of doubt which was promising. I received an email this morning that the children’s non-specialized services waitlist currently has 403 kids on it. This doesn’t include kids waiting for specialized services or kids getting just a fraction of what they need. We’re also watching LD 1377, An Act To Enhance and Improve the Maine Developmental Services Oversight and Advisory Board and To Establish an Independent Oversight Panel To Review Deaths of and Serious Injuries to Persons with Intellectual Disabilities or Autism, for which a public hearing has yet to be scheduled. The Department also has a bill in that would create a mortality review panel, for which an LD number is not yet available. The HHS Committee is waiting for this bill to be finalized so that the public hearings for these bills can be heard on the same day. LD 1486, An Act To Strengthen Supports for Adults with Intellectual Disabilities or Autism in Crisis, is a bill submitted by MACSP (Maine Association of Community Service Providers). This bill would direct the Department to promulgate rules around crisis services, because they’ve never been promulgated despite being statutorily mandated. Another aspect of the bill includes developing services and corresponding rates to meet the higher behavior needs of folks coming into crisis services in an appropriate fashion – allowing for services to angle up to include more intensive supports before someone gets to crisis, as well as angle down as they’re stepping down out of crisis services. All told there are about 45 bills we’re monitoring. There are so many bills out there that pertain to and would affect people with ID/DD – I have a list of bills we’re tracking, and I would encourage you all to take a look. The list includes links directly to the bills if you’d like more information as well. (Click here for the Excel version of the list of bills, click here for the PDF version of the list of bills.)
Disability Rights Maine (DRM) Update:
Stacy Converse: Our DD Advocacy program is launching a more concerted efforts at monitoring and reaching out to individuals in their homes, providing information about DRM and how we can be of assistance. Our Children’s team continues to monitor the results of the Public Consulting Group (PCG) Report, and it appears that the State is looking to contract with PCG to put together an implementation plan.
Other Business:
-A parent provided information on his experience in Texas interfacing with school districts and regional education centers, which he detailed as being positive. He stated that it would be great if the Coalition and Autism Society of Maine collaborated and advocated for funding from DHHS for an annual state Autism conference.
Cathy Dionne – Autism Society of Maine: Autism Society of Maine hosts two free conferences for families in Maine each year. The next conference will be held on November 2, 2019, in Orono. (Click here for the conference flyer.)
Handouts/Announcements/Upcoming Events
- There is a presentation and Q&A with Derek and Dylan Volk on 4/9/19 in Bath. Click here for more information.
- There is a free screenings of Extraordinary People - A New Documentary About Adults with Autism & Employment, in Biddeford on 4/10. Click here for the flyers and more information.
- Waiting for Section 29 or 21 services? There is a self-Advocate & Parent Forum in Hampden 4/11. Click here for more information.
- There is a Maine Parent Federation Navigator Training on 5/3/19. Click here for more information.
- Click here for the 2019 Maine Kids Count Book.
The next meeting will be on May 13, 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: Paul Saucier, Director, DHHS-Office of Aging and Disability Services (OADS). Topic: OADS Update and related discussion.
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].