September 10, 2018
Minutes
Minutes
Present: Ed & Suellen Doggett, Skip McGowan, Elizabeth Sullivan, Paul Henton, Jenn Brooking, Brian Sites, Terry Baldwin, David Cowing, Mark Kemmerle, Matt Stone, Julie Brennan, Erin Rowan, Rachel Dyer, Patrick Moore, Abbie Tanguay, Sarah Robinson, Luc Nya, Julian Baer, Bonnie-Jean Brooks, Margaret Longsworth, Lydia Dawson, Linda Sanborn, Peter Stuckey, Foxfire Buck, Lauren Wille, Jennifer Putnam, Margaret Cardoza, Annmarie Mayberry, Wendi DuBois, Mary Chris Semrow, Beth Mylroie, Scott Miller, Betsy Mahoney, Cullen Ryan, and Vickey Rand. Via Zoom – (Bangor): (Sanford): Brenda Smith. (Brunswick): Teague Morris, Ray Nagel, and Colleen Gilliam. (Farmington): Darryl Wood and Kristin McPherson. (Winthrop): Cathy Dionne, Darla Chafin, and Ann Long. (Waterville): Pam Cairnie and Cheryl. Misc. sites: Kathy Adams and Stacy Lamontagne.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Featured Speaker: Matthew Stone, Writer, Maine Focus Team, Bangor Daily News, bangordailynews.com Topic: The last resort: Life in Maine’s Emergency Rooms. As a follow-up to his recent article in the Bangor Daily News, Matthew will present his research on Maine’s crisis services system for people with intellectual/developmental disabilities, including unmet needs, and what happens when crisis services don’t meet needs.
Cullen: Crisis services is one of the topics that came up when we had the Maine Developmental Services Oversight and Advisory Board (MDSOAB) forums here in June and July. Today’s presentation offers a great opportunity to follow up on that discussion. Matt Stone recently wrote an article in the Bangor Daily News about the crisis services system in Maine for people with ID/DD. Today, Matt is going to be discussing his research for that article, his findings, and engaging in an open dialogue with this group. Matt, I’m very pleased to have you here today, welcome!
Matt Stone: I’m very happy to be here today. You asked me to talk about what I’ve found in my research. I think a lot of the people in this room probably knew my findings, before the article was even published. I think the story I’m about to talk about put a lot of those different pieces of information into a context to which a lot of people around the table can relate. The response to the article has been pretty tremendous.
Begin Presentation (Click here to view the presentation):
Matt: Today I’m here to mostly talk about two young men – Robbie and Kyle - whose stories involved long stays in emergency rooms (ERs). These ER stays were related to the state of crisis services in Maine. It’s difficult to just talk about one element of the system without considering how it interacts with every other part of the system. The story we ran on August 22nd attracted tremendous interest – it was the second most read piece for the month of August on the Bangor Daily News site. The story focused on these two young men, who both have Autism. After the story ran, a reader, the parent of an adult with ID/DD, contacted me and said the story illustrated a lot of dead ends in the system. I think this is well said.
Robbie – he loves to swim and spend time outside. He talks a mile a minute about everything in his imagination. He usually wants to be the peacemaker in situations. He can sometimes act aggressively. He has had two extended stays in Maine ERs. Last winter Robbie spent 39 days at Houlton Regional Hospital after his group home discharged him due to violent behavior. He spent Christmas and New Year’s in the ER. Then, he moved into a group home in New Gloucester. In July, he spent 21 days in the ER at St. Mary’s in Lewiston, which has a behavioral emergency department. I heard from his mother when the story was published that Robbie was in a transition bed awaiting a permanent placement. He was still in limbo, but not in the ER any longer.
Kyle is even farther away. His mom lives in Ellsworth, and his Aunt lives in Carmel. Kyle has been just outside of Tampa Florida for more than a year now. Kyle is non-verbal and communicates using a picture book, and enjoys watching movies and listening to music on his tablet. When APS (Adult Protective Services) first took Kyle and his twin brother Colby from his father’s house in 2015, his first stop was a crisis bed in Monmouth. He spent seven months there, while a permanent placement was worked out.
The idea behind a crisis bed is that it is a temporary place where someone can stabilize. The few crisis beds we have in Maine have become longer-term placements for people who are difficult to place. This leaves no capacity for others who need crisis beds. I lacked hard data on any of these phenomenon, but the stories from my reporting have become increasingly common. Kyle moved from a crisis bed to another group home – but this didn’t last long. He ended up in the Eastern Maine Medical Center (EMMC) ER for 45 days. The hospital assigned extra security for him, anticipating the next behavioral outburst, and a common response for these outbursts was using medication. His aunt Margaret, who’s here today and is also his co-guardian, shared just about everything with me – MaineCare bills and daily notes from nurses and doctors detailing his stay in the ER. Just about every day those notes detailed a team meeting about options – and just about every day the notes detailed nonresponse to a pending vendor call. There was no space at Spring Harbor, or Hampstead Hospital in New Hampshire. His team started talking about an out of state placement in Florida. A few weeks and tens of thousands of dollars later, he was in Florida. He Skypes almost every day with his mother, but she’s only been able to go visit him a couple times. He hasn’t seen his brother Colby in more than two years.
I worked on this story for most of the summer, but I looked back and realized I had been building up to it since last October, when I received an anonymous tip about Kyle’s story. I didn’t know it was Kyle at the time. This past winter, I heard that a group home had a client who it had to discharge due to similar circumstances – this was Robbie’s story. I knew the contours of the story but had no idea it was Robbie’s story. This past February I did a story which included general information, but didn’t identify Robbie or Kyle. However, there were enough details that their families and service providers knew about whom I wrote. I got a call in early July from a service provider, who stated that they had contact information for Robbie’s mother, and she was ready to tell her son’s story. I met with her two days later. I connected with Kyle through OHI, where his co-guardian works. I speak somewhat regularly with Bonnie-Jean Brooks about services and the history of the system of care so I was familiar with OHI. I connected with Kyle’s co-guardian, and she was ready to share his story as well. It was the willingness of Robbie and Kyle’s families to share their stories which made this truly come alive.
Cullen: Thank you, Matt, for sharing this with the group. In your article you did some research on the expenses undertaken. Do you want to talk about that?
Matt: The research involved Margaret passing along all of Kyle’s MaineCare bills. Kyle’s ER stay at EMMC was roughly $60,000. Since there was no in-state option, the only option was an air ambulance which airlifted him to Florida. That air ambulance cost about $19,000. The daily rate for his placement in Florida is $1,700. In all, the cost came to around $600,000. You can look at that as the cost of not providing services close to home. Margaret also provided billing information for Kyle’s brother Colby. The cost for Colby’s group home placement, at the standard rate over the same time period, was about $145,000.
-It was stated that discussing the cost differences between Kyle and Colby might not be comparing apples and oranges. It was asked if Kyle and Colby exhibit similar behaviors and have similar capacity.
Matt: I know that they are both prone to aggressive outbursts. Colby is a bit more higher functioning than Kyle. He also has some verbal capabilities. He is prone to some aggression towards staff and roommates, and also destructive behavior in his environment. What is not included in the $145,000 are the environmental modifications that OHI had to make and absorb in order to keep Colby safe.
Margaret: They are both very challenged, with very limited safety skills. In a lot of ways Colby has more challenges than his brother. His mother and I became his co-guardians two weeks before he went to Florida. The guardianship process was very drawn out, and one of the reasons they got stuck in the crisis system – there was no legal decision-maker. While we went through this process, Kyle had two impacted wisdom teeth, gingivitis, cavities, and other dental issues which caused him extreme pain – pain he didn’t know how to express. No one did anything about it. Within two weeks of being placed in a group home locally, he headbutted his roommate and blackened both his roommate’s eyes. He couldn’t communicate he was in excruciating pain. This landed him in the ER. Unless your teeth are obstructing your breathing, no one in the ER is going to do anything about dental work – it’s not viewed as an emergency. For Kyle, it was an emergency. He spent more than a month in excruciating pain. All of this money was spent almost entirely because he didn’t get timely dental services. Since being in the placement in Florida, and receiving the dental care he desperately needed, he’s improved and has been ready to come home for a while now; but now we can’t get him back because he has this history, and we don’t have the resources in Maine to effectively care for people who are challenging. The two brothers have very different needs, but they’re both very significant, both exacerbated by years of not getting what they needed in their childhood. This shines a light on CPS (Child Protective Services). CPS was involved multiple times throughout their childhoods – CPS didn’t intervene. And, there was nowhere for them to go if they did.
Cullen: Your article also discussed closings of group homes. What did you find were the causes of those closures?
Matt: From everyone I’ve spoken with, it all comes down to the MaineCare reimbursement rate. I haven’t seen the breakdown from the most recently passed legislation, but the rate equated to not much more than minimum wage. It’s difficult to attract and retain qualified, dedicated staff with such a low rate. It’s hard for agencies to keep their doors open. The State is required to conduct a MaineCare rate review, which isn’t a simple, straightforward task. The law says it’s supposed to be done annually. The MDSOAB pointed out that hadn’t been done. And, until recently, the MaineCare reimbursement rate for group home care was lower than it was in 2007. Without legislative intervention this would have continued.
Lydia Dawson (MACSP): People keep coming to me asking whether or not that’s gotten better with the recently enacted rate increases. In order to access any of that funding, the Department needs to promulgate rules, which they haven’t done yet. We haven’t seen any of the legislative allocation yet. We haven’t seen an increase, but providers are simultaneously dealing with the 10% cut that came in July. Also, it’s a great point about comparing apples and oranges; however, we’re all our very own unique fruit. What we’ve done is created a system of care that’s so standardized and so underfunded it gives you x amount of care – and that’s the bare minimum. If you’re a person that requires more than that, then we have no real system for you. It costs so much money because we’re trying to create a nonexistent system. We’ve minimized our system to where if you’re not the most standardized apple you’re not getting anything.
-It was stated that on top of this, there are people who are waiting for service offers, who have nothing.
-It was stated that using people-first language is imperative. The headline for the article did not included people-first language.
Cullen: In your article you spoke about a system in disarray, speaking to both crisis services and group homes. What’s your conclusion?
Matt: That language came from a quote in the article. As a reporter, I try to document the facts and leave the colorful language to the quotes. It’s an assessment that relates to multiple factors. The story is one about crisis services, because theoretically if a crisis bed was available the ER wouldn’t have been utilized. The hospital stays lasted longer than they needed to because of the lack of capacity in the system. This lack of capacity is partly due to the MaineCare rates, and partly due to other changes over the past decade or more that have made it difficult for providers to provide the services that are needed.
-It was stated that we’re able to look at what has been provided to this young man in Florida through this story. It was asked what’s in place there, that isn’t in place in Maine, so we don’t have to reinvent the wheel.
Matt: I think, and Margaret might want to chime in, the key was the dental care in Kyle’s case. For Kyle, he had been relatively stable in Florida after having his dental care finally addressed. In the Bangor area there’s one dentist that can provide IV sedation dentistry. I think that’s the first thing. Neurorestorative, the program in Florida, has programs in 25 states, including in Maine; however, this specific program in Florida takes people in from all over the country because it’s specialized, with a higher degree of medical training, specialists, etc. MaineCare is paying for Kyle. It’s a similar situation for someone from any other state who ends up at that facility in Florida. The rate that MaineCare is paying Neurorestorative in Florida is about three times what his brother Colby is getting, which is obviously not a standardized situation.
Margaret: The service Kyle receives in Florida is comprehensive, and includes monitoring by primary care, nursing, med management, psychiatry, occupational therapy, speech therapy, and so on – whatever he would need is included in that rate. Whereas for his brother in Maine, most of those services are outside of the rate. It is a comparison of an apple to an orange, because we don’t have that comprehensive service in Maine. When Kyle went to Florida, he was so far gone I don’t know if he could’ve safely gone into a crisis house. There are a whole lot of “ifs” there. This comes down to a lot of system breakdowns. Luckily there was a place for him to go. It’s not community integrated services because his community isn’t in Florida, it’s here.
Lydia: Florida isn’t the only place that can grow “oranges”. We have the ability to create that service here. Currently, we are prohibited by creating that exact same thing due to regulations. It’s a systems issue that doesn’t allow us to cultivate that here.
Matt: Thanks for clarifying that Neurorestorative includes a whole package, but I think that’s the key. Those specialized services were there in a package. Florida has a tremendously long waiting list – residents of Florida are waiting for services. Neurorestorative isn’t part of the same system where the state is placing people there because it’s more specialized.
Lauren Wille (DRM): We’ve been talking a lot about crisis services. I also want to point out that there’s a wide array of crisis services that should be available in Maine, and that doesn’t just include crisis beds, though those are certainly lacking. DHHS recently started a crisis stakeholders group to get input from people on how to improve crisis services. At a recent meeting the theme that kept coming up again and again for people was the lack of preventative and early-intervention crisis services, a lack of respite beds, a lack of mobile crisis units, and a lack of crisis workers calling people back in a timely manner. The umbrella of “crisis services” includes a lot of preventative crisis services to avoid this happening in the first place, which are also very inadequate currently.
Matt: The state of crisis services in Maine – we used to have 24 crisis beds, but now we effectively have four. Crisis services staff have all of these other responsibilities – training group home staff, working on preventative services, responding over the phone, etc. Crisis services was in all of those team meetings with Kyle. They were still working to try to get him out of the ER. The crisis stakeholder group put together a presentation, which noted there were 44 crisis staff. This is 44 crisis staff for a system that serves 6,000 people or so. That’s the same number from a similar presentation in 2005 – 13 years ago when there were fewer people who were receiving and in need of crisis services. It’s another example I have seen where we’re operating using this structure we haven’t changed or adapted all that well over the past decade or more.
Bonnie-Jean Brooks (OHI): I look around the room and see a lot of young people, relative to my time having served people here in Maine. I’ve been in my job for 39 years – it was created by the State of Maine during the Consent Decree years to specifically address people dually diagnosed with ID/DD and mental illness. There were times in our system that pale in comparison to the state we find ourselves in now. Things began to change just before the Community Consent Decree was closed in 2010. There were some resources in place that are no longer in place that created the condition where very, very few people, less than a handful, were being placed out of state on the adult side. I would point at – trying to be very factual – that change having made the difference. In those days, if someone was referred to OHI we would find out who they were as an individual and what their needs were, and we would quantify that to the best of our ability. We would determine what it would take to serve this person. We would negotiate with the State using hard facts. One of the resources available was an opportunity to environmentally alter the property so the person and housemates would be safe. If you had to recess all of the lights in the room, replace the windows, have hardboard walls, money was available to alter that environment so everyone was safe. And then, you could begin to become less restrictive as people were supported and you gained their trust. Another thing that was available was the behavioral add-on. If the person demonstrated a certain level of inappropriate behavior, you knew you were going to need more resources to support the person and more resources were available through the behavioral add-on. Also, there was money in the contingency fund, which is still available but few people know about it. In the case of Colby, if he kicks out a wall, etc., there are resources there. Of course that wouldn’t happen in the days where you could alter the environment to begin with. That’s not there anymore. There wasn’t a person who was turned away in those days – not a single person who was turned away and sent to an institution, and that has changed.
Comment: It’s hard to divorce this from politics. This Coalition developed a plan which it shared with DHHS, overhauling the system we have now. We need a comprehensive structure that we currently do not have. The system used to work, in that there were a number of people in a number of agencies who knew the stakeholders, the providers, the gaps in between, and they individually had some capacity to make decisions about how to close those gaps. During the first year of Commissioner Mary Mayhew’s administration, she had a meeting with 40 to 45 individuals, in which they were all fired. They’re gone. That institutional knowledge was lost. The whole notion of written rules and regulations became the standard. Now, often times you can’t fill those gaps at all. There’s no doubt we have a budget surplus right now, but we also have all of these needs not getting addressed. I don’t think we have the capacity in State government to look at this comprehensively, in conjunction with executive and legislative branches which will allow you to try things out. I remember 15 years ago the Department started a wraparound project all over the state; as soon as this administration took over that was disbanded almost overnight. The capacity of local providers to see a unique situation and apply funds to help address that situation just isn’t there anymore. It’s not that it was a failure – in the minds of some it was unmanageable. Until there’s some sort of recognition that there needs to be a long-term commitment from administration and leadership at the state government level, as well as at the regional and local levels, that can work and talk with each other, these issues will not be solved. There is a lot of talent in Maine, what Maine doesn’t have is organization to take this all in under a comprehensive umbrella model like the Coalition’s Developmental Services Lifelong Continuum of Care, where you can use resources collaboratively to address the gaps in the system. Also, there is never going to be enough money. So, the need to send someone to Florida in a micro-comprehensive system might not have been necessary if we had all of those systems working together here. It’s really a sad state of affairs. The way out of it is ensuring the people we put in office get it and care.
Lydia: Something I constantly struggle with is being reactive versus proactive. Regardless of the next administration, we have the time now. I think we have to be really selective and proactive with the things we push for as a community, and the thing that gets lost in these conversations oftentimes is the next generation to come into the system. The waitlists for children’s services continues to grow. Every year we don’t put into early intervention is the rest of someone’s life. I worry about that a lot. At some point we must look at that as a community; we have to look at what’s happening in children’s services. While we mourn what’s happened with adults services, children’s services is breaking down. Our children are being failed now; we’re not seeing the effect on adult services yet, because we’re a generation behind. We have an opportunity to be really effective in children’s services.
-It was stated that the Coalition holding a brainstorming session for ideas on which the group can focus with the Department would be advantageous.
Mark Kemmerle (MDSOAB): Regarding the MDSOAB year-end report, linked at the end of Matt’s article – I was asked to file a copy with the Law Library. They asked me if there were previous years’ reports because they didn’t have them on file. I sent them what I had. In doing this, I realized that each report included all the same observations, the same shortcomings, the same recommendations. It occurs to me that this isn’t working. It comes across as complaining. I’m worried that it’s not helpful. What I’m going to propose to my Board is to figure out where we can make a difference very narrowly. It’s very easy to generate a list of shortcomings or recommendations for change, but they seem to be falling on deaf ears. The priority of last two administrations has been not to spend – not “spend wisely,” but plainly not to spend. Part of this time included the Great Recession, yes, but also any new revenues are tax revenues. We have to recognize that spending money on this is necessary. We all ought to look very seriously where we think we can have the biggest effect.
-It was stated that when Baldacci became Governor, and years before that, it was the tendency of the State to pass costs along to the local school districts, and local tax payers. It was stated that with this you end up with a system that has wealth and a system that doesn’t; local governments willing and not willing to allocate funding to certain areas – as opposed to a more uniform application through the State. It was mentioned that there has been a very clear effort on the part of the State to pass costs along and thereby reduce its expenditures.
Peter Stuckey: We have plenty of money in the state of Maine. We just don’t collect it from the right people, in the right amounts, and put it in the right places. The other thing I’m going to put out there, and I hope this group can help me understand what happened – several years ago there was a clinic in Portland that could’ve helped with Kyle’s dental work. It seemingly closed overnight. Some of us worked on trying to get that restored. I thought that Community Dental was going to try to re-establish that surgical capacity in this community. I really thought that we had created a path to bring that back, so people didn’t have to travel to Bangor, further exacerbating the crisis, for IV sedation dentistry. What happened to those services? Did the money get redirected? Is that capacity there, and this was an unfortunate miss?
Margaret: In Kyle’s case, one of the women searched through his entire MaineCare record and couldn’t find any evidence of any payment to any dentist throughout his entire life. It wasn’t missed once, it was missed repeatedly. There was a lot of falling down on the job.
-It was stated that Community Dental in Portland does not do IV sedation dentistry. They have a contract to provide this service through the Maine Med campus in Scarborough. The State contracts with clinics, which are paid 100% with state dollars. That is a reimbursable service under Medicaid.
-A parent stated that his son received IV sedation services through Community Dental. He has dental insurance. The parent hand-carried his son’s medical records to multiple appointments at Community Dental, and took them to the Maine Med Scarborough campus where his son received sedation services. This took an inordinate amount of work and money to accomplish. This parent stated that it appears that if you have a middle class or well-to-do, intact family, you get one kind of service. If you don’t have that, you don’t get it.
Cullen: It sounds like this group would greatly benefit from spending some time on dental services. As we wrap up I wanted to ask you, Matt, do you have any closing thoughts, perhaps thoughts that have come to you between when this was published and now?
Matt: I keep going back to all of this information. I had one follow-up article after I published this story about the Department’s response. Last March I had asked for information regarding how many people are in Robbie and Kyle’s situation. The response I received was essentially that they didn’t have the information to provide. I would think the information lies in MaineCare billing, it’s somewhere, but it’s obviously not available to the general public who could then use it to problem-solve, or bring these situation to light. That’s what I was trying to do with the story. I didn’t have all of the information I needed to make a numerical case, but that would be of help to the Maine public.
Cullen: I want to thank you, Matt, for all your research for that story. You painted a great picture in your article, which generated a healthy dialogue today. Thank you for your work, on this article, and others. I hope you will continue to explore this topic. We’re working to better determine where those pinch points are, and someone looking at the system neutrally will better help us get there. Thank you!
[Large round of applause]
End of presentation.
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Cullen: It’s great to have representation from DHHS around the table; thank you for being here today!
Julian Baer: I don’t have any prepared remarks for today. I just wanted to attend, to be here, and to listen. It’s easy when you don’t hear things from the Department to think that nothing is going on. I want you all to know that crisis services is a significant issue we’re working on.
Cullen: Julian, thank you for being here. I’m glad you were here to attend and listen – that’s great. I hope you continue to attend. DHHS and OADS is a vital source of information on which parents around this table depend. Having Department representation at these meetings is important in ensuring an inclusive dialogue, from which everyone benefits. Thank you again for being here. Does anyone have any updates related to OADS they would like to share?
-It was stated that there is movement on self-directed services.
Bonnie-Jean: Self-directed services is part of a reauthorization bill being considered in Congress. Last time it was reauthorized for five years; the discussion in Congress now is whether there is the will to reauthorize for five years, or perhaps a shorter period of time. One of the entities that did research about self-directed services is a group called Mathematica. They did extensive research about how that money has been used in different states, including Maine. Very little in Maine has been applied to the ID/DD area. We’ve just provided that information to our Delegation and are asking for their advocacy around passing the bill. My hope is that it will be reauthorized and we can advocate in Maine to have some of that money follow people with ID/DD; that’s where we’ll have to put our thinking hats on in this group. It’s the EMPOWER Care Act (there are versions of this bill in both the Senate and House). Senator Collins is a co-sponsor of the Senate bill, and is currently the only member of Maine’s delegation who has signed onto the bill.
-Teague Morris with Senator King’s office stated that he was taking notes and would pass them along to Senator King.
Lydia: This week is DSP (Direct Support Professional) recognition week. I hope everyone has the opportunity to thank their DSPs for all of their hard work. I can also provide an update about where we are with regulatory changes. There are three sets of regulations that are still pending. We provided comments but haven’t seen the Department’s response. One was Targeted Case Management rule changes, which removed certain covered activities including financial consulting, data entry, any time spent recording or providing documentation, prepping things, among others. We’ve talked here before about the Maine Background Check Center – we have concerns about that process, but the regulations pertaining to how that is supposed to work are still in limbo. The children’s psychiatric residential treatment facility regulations haven’t come out either. There are also some changes to Section 21 that are coming down the line, including the rate increases, for which everyone is eagerly waiting. Once the rules are promulgated, they will be retroactive to 7/1/18. There are other changes to Section 21 that have been sent to the Attorney General’s office before being posted for public comment. One of the major changes included in those rules is that all homes will have to be licensed by 1/1/2020. Right now, one and two-bed homes are not required to be licensed. This would also include people who own their own home. There are some positive things as well, including a process for requesting single person placements, increases to the cap on community and work supports, and a direct process to appeal your priority status. We have some concerns about the changes, but this is another opportunity to be proactive. We know it’s coming, so it’s a good opportunity to get aligned about the things on which we all agree, in order to speak with one unified voice.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: Thank you for being here, Luc! It’s wonderful to have OCFS around the table. Do you have any updates for the group?
Luc Nya: I’m with OCFS Children’s Behavioral Health Services. OCFS has engaged Public Consulting Group to assist us in doing a thorough assessment of Children’s Services, including the whole continuum of Children’s Behavioral Health. I have a handout for folks, because we’re welcoming input from everyone. Anyone interested in being part of this process, can include their information on the sheet going around the table. I will also send this to Cullen for inclusion in the minutes (click here).
Lydia: Does this include Child Development Services (CDS)?
Luc: I didn’t go into that level of detail, but that’s something you can definitely ask Public Consulting Group.
SMACT (Southern Maine Advisory Council on Transition) –
Kathy Adams: October 5th is the first SMACT meeting of the year. Bob and Pam from Group Mainstream are coming to speak with the group about shared living. The meeting will be held at the Martin’s Point Community Room.
Disability Rights Maine (DRM) - drme.org
Lauren Wille: I wanted to introduce our new Portland Advocate.
Foxfire Buck: I just got started, but I’m excited to get to work advocating for people in the southern Maine area.
Lauren: We still continue to meet with OADS and OMS (Office of MaineCare Services) about continuing issues involving transportation, specifically around issues like that lack of notice for cancellations, appeal rights, and escort attendant issues. We continue to meet with the Department to raise these concerns. If anyone has any issues they would like us to address regarding transportation, please let us know. The Department sent out a letter to transportation brokers, reminding them of the responsibility they have to provide written notification to people about changes or cancellation of transportation, including the right to appeal.
Lydia: Are you only assessing individual cases, or would you consider looking at a class, a group of people?
Lauren: It’s definitely something we’re considering. We have a lot of general issues that affect more people. It’s a constant discussion at DRM about the best way to consider this.
Cullen: We have been trying for a while to get LogistiCare here to present. Transportation continues to be an issue for people and I’m hopeful that they can present at a meeting in the very near future.
State Legislature Update:
Lydia Dawson – Maine Association for Community Service Providers (MACSP): We’re still hoping to meet with the gubernatorial candidates. On 9/24, the Maine Association for Nonprofits (MANP) is holding a Nonprofit and Philanthropic Gubernatorial Forum, in Bangor. I encourage you to reach out to MANP with questions for the candidates.
Federal Update:
Cullen: As I’ve mentioned at previous meetings, both the House and Senate FY 19 T-HUD bills are favorable, include significant appropriations above the President’s budget request, and provide increases to HUD programs versus FY 18 enacted funding. However, the House bill would not provide enough funding to fund all Section 8 renewals, whereas the Senate bill, which it passed in early August, would.
Announcements:
The next meeting will be on **October 15, 2018**
**Please note this is the third Monday of the month due to the holiday on our regular meeting date**
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 Speakers and Topic TBD.
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).
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Featured Speaker: Matthew Stone, Writer, Maine Focus Team, Bangor Daily News, bangordailynews.com Topic: The last resort: Life in Maine’s Emergency Rooms. As a follow-up to his recent article in the Bangor Daily News, Matthew will present his research on Maine’s crisis services system for people with intellectual/developmental disabilities, including unmet needs, and what happens when crisis services don’t meet needs.
Cullen: Crisis services is one of the topics that came up when we had the Maine Developmental Services Oversight and Advisory Board (MDSOAB) forums here in June and July. Today’s presentation offers a great opportunity to follow up on that discussion. Matt Stone recently wrote an article in the Bangor Daily News about the crisis services system in Maine for people with ID/DD. Today, Matt is going to be discussing his research for that article, his findings, and engaging in an open dialogue with this group. Matt, I’m very pleased to have you here today, welcome!
Matt Stone: I’m very happy to be here today. You asked me to talk about what I’ve found in my research. I think a lot of the people in this room probably knew my findings, before the article was even published. I think the story I’m about to talk about put a lot of those different pieces of information into a context to which a lot of people around the table can relate. The response to the article has been pretty tremendous.
Begin Presentation (Click here to view the presentation):
Matt: Today I’m here to mostly talk about two young men – Robbie and Kyle - whose stories involved long stays in emergency rooms (ERs). These ER stays were related to the state of crisis services in Maine. It’s difficult to just talk about one element of the system without considering how it interacts with every other part of the system. The story we ran on August 22nd attracted tremendous interest – it was the second most read piece for the month of August on the Bangor Daily News site. The story focused on these two young men, who both have Autism. After the story ran, a reader, the parent of an adult with ID/DD, contacted me and said the story illustrated a lot of dead ends in the system. I think this is well said.
Robbie – he loves to swim and spend time outside. He talks a mile a minute about everything in his imagination. He usually wants to be the peacemaker in situations. He can sometimes act aggressively. He has had two extended stays in Maine ERs. Last winter Robbie spent 39 days at Houlton Regional Hospital after his group home discharged him due to violent behavior. He spent Christmas and New Year’s in the ER. Then, he moved into a group home in New Gloucester. In July, he spent 21 days in the ER at St. Mary’s in Lewiston, which has a behavioral emergency department. I heard from his mother when the story was published that Robbie was in a transition bed awaiting a permanent placement. He was still in limbo, but not in the ER any longer.
Kyle is even farther away. His mom lives in Ellsworth, and his Aunt lives in Carmel. Kyle has been just outside of Tampa Florida for more than a year now. Kyle is non-verbal and communicates using a picture book, and enjoys watching movies and listening to music on his tablet. When APS (Adult Protective Services) first took Kyle and his twin brother Colby from his father’s house in 2015, his first stop was a crisis bed in Monmouth. He spent seven months there, while a permanent placement was worked out.
The idea behind a crisis bed is that it is a temporary place where someone can stabilize. The few crisis beds we have in Maine have become longer-term placements for people who are difficult to place. This leaves no capacity for others who need crisis beds. I lacked hard data on any of these phenomenon, but the stories from my reporting have become increasingly common. Kyle moved from a crisis bed to another group home – but this didn’t last long. He ended up in the Eastern Maine Medical Center (EMMC) ER for 45 days. The hospital assigned extra security for him, anticipating the next behavioral outburst, and a common response for these outbursts was using medication. His aunt Margaret, who’s here today and is also his co-guardian, shared just about everything with me – MaineCare bills and daily notes from nurses and doctors detailing his stay in the ER. Just about every day those notes detailed a team meeting about options – and just about every day the notes detailed nonresponse to a pending vendor call. There was no space at Spring Harbor, or Hampstead Hospital in New Hampshire. His team started talking about an out of state placement in Florida. A few weeks and tens of thousands of dollars later, he was in Florida. He Skypes almost every day with his mother, but she’s only been able to go visit him a couple times. He hasn’t seen his brother Colby in more than two years.
I worked on this story for most of the summer, but I looked back and realized I had been building up to it since last October, when I received an anonymous tip about Kyle’s story. I didn’t know it was Kyle at the time. This past winter, I heard that a group home had a client who it had to discharge due to similar circumstances – this was Robbie’s story. I knew the contours of the story but had no idea it was Robbie’s story. This past February I did a story which included general information, but didn’t identify Robbie or Kyle. However, there were enough details that their families and service providers knew about whom I wrote. I got a call in early July from a service provider, who stated that they had contact information for Robbie’s mother, and she was ready to tell her son’s story. I met with her two days later. I connected with Kyle through OHI, where his co-guardian works. I speak somewhat regularly with Bonnie-Jean Brooks about services and the history of the system of care so I was familiar with OHI. I connected with Kyle’s co-guardian, and she was ready to share his story as well. It was the willingness of Robbie and Kyle’s families to share their stories which made this truly come alive.
Cullen: Thank you, Matt, for sharing this with the group. In your article you did some research on the expenses undertaken. Do you want to talk about that?
Matt: The research involved Margaret passing along all of Kyle’s MaineCare bills. Kyle’s ER stay at EMMC was roughly $60,000. Since there was no in-state option, the only option was an air ambulance which airlifted him to Florida. That air ambulance cost about $19,000. The daily rate for his placement in Florida is $1,700. In all, the cost came to around $600,000. You can look at that as the cost of not providing services close to home. Margaret also provided billing information for Kyle’s brother Colby. The cost for Colby’s group home placement, at the standard rate over the same time period, was about $145,000.
-It was stated that discussing the cost differences between Kyle and Colby might not be comparing apples and oranges. It was asked if Kyle and Colby exhibit similar behaviors and have similar capacity.
Matt: I know that they are both prone to aggressive outbursts. Colby is a bit more higher functioning than Kyle. He also has some verbal capabilities. He is prone to some aggression towards staff and roommates, and also destructive behavior in his environment. What is not included in the $145,000 are the environmental modifications that OHI had to make and absorb in order to keep Colby safe.
Margaret: They are both very challenged, with very limited safety skills. In a lot of ways Colby has more challenges than his brother. His mother and I became his co-guardians two weeks before he went to Florida. The guardianship process was very drawn out, and one of the reasons they got stuck in the crisis system – there was no legal decision-maker. While we went through this process, Kyle had two impacted wisdom teeth, gingivitis, cavities, and other dental issues which caused him extreme pain – pain he didn’t know how to express. No one did anything about it. Within two weeks of being placed in a group home locally, he headbutted his roommate and blackened both his roommate’s eyes. He couldn’t communicate he was in excruciating pain. This landed him in the ER. Unless your teeth are obstructing your breathing, no one in the ER is going to do anything about dental work – it’s not viewed as an emergency. For Kyle, it was an emergency. He spent more than a month in excruciating pain. All of this money was spent almost entirely because he didn’t get timely dental services. Since being in the placement in Florida, and receiving the dental care he desperately needed, he’s improved and has been ready to come home for a while now; but now we can’t get him back because he has this history, and we don’t have the resources in Maine to effectively care for people who are challenging. The two brothers have very different needs, but they’re both very significant, both exacerbated by years of not getting what they needed in their childhood. This shines a light on CPS (Child Protective Services). CPS was involved multiple times throughout their childhoods – CPS didn’t intervene. And, there was nowhere for them to go if they did.
Cullen: Your article also discussed closings of group homes. What did you find were the causes of those closures?
Matt: From everyone I’ve spoken with, it all comes down to the MaineCare reimbursement rate. I haven’t seen the breakdown from the most recently passed legislation, but the rate equated to not much more than minimum wage. It’s difficult to attract and retain qualified, dedicated staff with such a low rate. It’s hard for agencies to keep their doors open. The State is required to conduct a MaineCare rate review, which isn’t a simple, straightforward task. The law says it’s supposed to be done annually. The MDSOAB pointed out that hadn’t been done. And, until recently, the MaineCare reimbursement rate for group home care was lower than it was in 2007. Without legislative intervention this would have continued.
Lydia Dawson (MACSP): People keep coming to me asking whether or not that’s gotten better with the recently enacted rate increases. In order to access any of that funding, the Department needs to promulgate rules, which they haven’t done yet. We haven’t seen any of the legislative allocation yet. We haven’t seen an increase, but providers are simultaneously dealing with the 10% cut that came in July. Also, it’s a great point about comparing apples and oranges; however, we’re all our very own unique fruit. What we’ve done is created a system of care that’s so standardized and so underfunded it gives you x amount of care – and that’s the bare minimum. If you’re a person that requires more than that, then we have no real system for you. It costs so much money because we’re trying to create a nonexistent system. We’ve minimized our system to where if you’re not the most standardized apple you’re not getting anything.
-It was stated that on top of this, there are people who are waiting for service offers, who have nothing.
-It was stated that using people-first language is imperative. The headline for the article did not included people-first language.
Cullen: In your article you spoke about a system in disarray, speaking to both crisis services and group homes. What’s your conclusion?
Matt: That language came from a quote in the article. As a reporter, I try to document the facts and leave the colorful language to the quotes. It’s an assessment that relates to multiple factors. The story is one about crisis services, because theoretically if a crisis bed was available the ER wouldn’t have been utilized. The hospital stays lasted longer than they needed to because of the lack of capacity in the system. This lack of capacity is partly due to the MaineCare rates, and partly due to other changes over the past decade or more that have made it difficult for providers to provide the services that are needed.
-It was stated that we’re able to look at what has been provided to this young man in Florida through this story. It was asked what’s in place there, that isn’t in place in Maine, so we don’t have to reinvent the wheel.
Matt: I think, and Margaret might want to chime in, the key was the dental care in Kyle’s case. For Kyle, he had been relatively stable in Florida after having his dental care finally addressed. In the Bangor area there’s one dentist that can provide IV sedation dentistry. I think that’s the first thing. Neurorestorative, the program in Florida, has programs in 25 states, including in Maine; however, this specific program in Florida takes people in from all over the country because it’s specialized, with a higher degree of medical training, specialists, etc. MaineCare is paying for Kyle. It’s a similar situation for someone from any other state who ends up at that facility in Florida. The rate that MaineCare is paying Neurorestorative in Florida is about three times what his brother Colby is getting, which is obviously not a standardized situation.
Margaret: The service Kyle receives in Florida is comprehensive, and includes monitoring by primary care, nursing, med management, psychiatry, occupational therapy, speech therapy, and so on – whatever he would need is included in that rate. Whereas for his brother in Maine, most of those services are outside of the rate. It is a comparison of an apple to an orange, because we don’t have that comprehensive service in Maine. When Kyle went to Florida, he was so far gone I don’t know if he could’ve safely gone into a crisis house. There are a whole lot of “ifs” there. This comes down to a lot of system breakdowns. Luckily there was a place for him to go. It’s not community integrated services because his community isn’t in Florida, it’s here.
Lydia: Florida isn’t the only place that can grow “oranges”. We have the ability to create that service here. Currently, we are prohibited by creating that exact same thing due to regulations. It’s a systems issue that doesn’t allow us to cultivate that here.
Matt: Thanks for clarifying that Neurorestorative includes a whole package, but I think that’s the key. Those specialized services were there in a package. Florida has a tremendously long waiting list – residents of Florida are waiting for services. Neurorestorative isn’t part of the same system where the state is placing people there because it’s more specialized.
Lauren Wille (DRM): We’ve been talking a lot about crisis services. I also want to point out that there’s a wide array of crisis services that should be available in Maine, and that doesn’t just include crisis beds, though those are certainly lacking. DHHS recently started a crisis stakeholders group to get input from people on how to improve crisis services. At a recent meeting the theme that kept coming up again and again for people was the lack of preventative and early-intervention crisis services, a lack of respite beds, a lack of mobile crisis units, and a lack of crisis workers calling people back in a timely manner. The umbrella of “crisis services” includes a lot of preventative crisis services to avoid this happening in the first place, which are also very inadequate currently.
Matt: The state of crisis services in Maine – we used to have 24 crisis beds, but now we effectively have four. Crisis services staff have all of these other responsibilities – training group home staff, working on preventative services, responding over the phone, etc. Crisis services was in all of those team meetings with Kyle. They were still working to try to get him out of the ER. The crisis stakeholder group put together a presentation, which noted there were 44 crisis staff. This is 44 crisis staff for a system that serves 6,000 people or so. That’s the same number from a similar presentation in 2005 – 13 years ago when there were fewer people who were receiving and in need of crisis services. It’s another example I have seen where we’re operating using this structure we haven’t changed or adapted all that well over the past decade or more.
Bonnie-Jean Brooks (OHI): I look around the room and see a lot of young people, relative to my time having served people here in Maine. I’ve been in my job for 39 years – it was created by the State of Maine during the Consent Decree years to specifically address people dually diagnosed with ID/DD and mental illness. There were times in our system that pale in comparison to the state we find ourselves in now. Things began to change just before the Community Consent Decree was closed in 2010. There were some resources in place that are no longer in place that created the condition where very, very few people, less than a handful, were being placed out of state on the adult side. I would point at – trying to be very factual – that change having made the difference. In those days, if someone was referred to OHI we would find out who they were as an individual and what their needs were, and we would quantify that to the best of our ability. We would determine what it would take to serve this person. We would negotiate with the State using hard facts. One of the resources available was an opportunity to environmentally alter the property so the person and housemates would be safe. If you had to recess all of the lights in the room, replace the windows, have hardboard walls, money was available to alter that environment so everyone was safe. And then, you could begin to become less restrictive as people were supported and you gained their trust. Another thing that was available was the behavioral add-on. If the person demonstrated a certain level of inappropriate behavior, you knew you were going to need more resources to support the person and more resources were available through the behavioral add-on. Also, there was money in the contingency fund, which is still available but few people know about it. In the case of Colby, if he kicks out a wall, etc., there are resources there. Of course that wouldn’t happen in the days where you could alter the environment to begin with. That’s not there anymore. There wasn’t a person who was turned away in those days – not a single person who was turned away and sent to an institution, and that has changed.
Comment: It’s hard to divorce this from politics. This Coalition developed a plan which it shared with DHHS, overhauling the system we have now. We need a comprehensive structure that we currently do not have. The system used to work, in that there were a number of people in a number of agencies who knew the stakeholders, the providers, the gaps in between, and they individually had some capacity to make decisions about how to close those gaps. During the first year of Commissioner Mary Mayhew’s administration, she had a meeting with 40 to 45 individuals, in which they were all fired. They’re gone. That institutional knowledge was lost. The whole notion of written rules and regulations became the standard. Now, often times you can’t fill those gaps at all. There’s no doubt we have a budget surplus right now, but we also have all of these needs not getting addressed. I don’t think we have the capacity in State government to look at this comprehensively, in conjunction with executive and legislative branches which will allow you to try things out. I remember 15 years ago the Department started a wraparound project all over the state; as soon as this administration took over that was disbanded almost overnight. The capacity of local providers to see a unique situation and apply funds to help address that situation just isn’t there anymore. It’s not that it was a failure – in the minds of some it was unmanageable. Until there’s some sort of recognition that there needs to be a long-term commitment from administration and leadership at the state government level, as well as at the regional and local levels, that can work and talk with each other, these issues will not be solved. There is a lot of talent in Maine, what Maine doesn’t have is organization to take this all in under a comprehensive umbrella model like the Coalition’s Developmental Services Lifelong Continuum of Care, where you can use resources collaboratively to address the gaps in the system. Also, there is never going to be enough money. So, the need to send someone to Florida in a micro-comprehensive system might not have been necessary if we had all of those systems working together here. It’s really a sad state of affairs. The way out of it is ensuring the people we put in office get it and care.
Lydia: Something I constantly struggle with is being reactive versus proactive. Regardless of the next administration, we have the time now. I think we have to be really selective and proactive with the things we push for as a community, and the thing that gets lost in these conversations oftentimes is the next generation to come into the system. The waitlists for children’s services continues to grow. Every year we don’t put into early intervention is the rest of someone’s life. I worry about that a lot. At some point we must look at that as a community; we have to look at what’s happening in children’s services. While we mourn what’s happened with adults services, children’s services is breaking down. Our children are being failed now; we’re not seeing the effect on adult services yet, because we’re a generation behind. We have an opportunity to be really effective in children’s services.
-It was stated that the Coalition holding a brainstorming session for ideas on which the group can focus with the Department would be advantageous.
Mark Kemmerle (MDSOAB): Regarding the MDSOAB year-end report, linked at the end of Matt’s article – I was asked to file a copy with the Law Library. They asked me if there were previous years’ reports because they didn’t have them on file. I sent them what I had. In doing this, I realized that each report included all the same observations, the same shortcomings, the same recommendations. It occurs to me that this isn’t working. It comes across as complaining. I’m worried that it’s not helpful. What I’m going to propose to my Board is to figure out where we can make a difference very narrowly. It’s very easy to generate a list of shortcomings or recommendations for change, but they seem to be falling on deaf ears. The priority of last two administrations has been not to spend – not “spend wisely,” but plainly not to spend. Part of this time included the Great Recession, yes, but also any new revenues are tax revenues. We have to recognize that spending money on this is necessary. We all ought to look very seriously where we think we can have the biggest effect.
-It was stated that when Baldacci became Governor, and years before that, it was the tendency of the State to pass costs along to the local school districts, and local tax payers. It was stated that with this you end up with a system that has wealth and a system that doesn’t; local governments willing and not willing to allocate funding to certain areas – as opposed to a more uniform application through the State. It was mentioned that there has been a very clear effort on the part of the State to pass costs along and thereby reduce its expenditures.
Peter Stuckey: We have plenty of money in the state of Maine. We just don’t collect it from the right people, in the right amounts, and put it in the right places. The other thing I’m going to put out there, and I hope this group can help me understand what happened – several years ago there was a clinic in Portland that could’ve helped with Kyle’s dental work. It seemingly closed overnight. Some of us worked on trying to get that restored. I thought that Community Dental was going to try to re-establish that surgical capacity in this community. I really thought that we had created a path to bring that back, so people didn’t have to travel to Bangor, further exacerbating the crisis, for IV sedation dentistry. What happened to those services? Did the money get redirected? Is that capacity there, and this was an unfortunate miss?
Margaret: In Kyle’s case, one of the women searched through his entire MaineCare record and couldn’t find any evidence of any payment to any dentist throughout his entire life. It wasn’t missed once, it was missed repeatedly. There was a lot of falling down on the job.
-It was stated that Community Dental in Portland does not do IV sedation dentistry. They have a contract to provide this service through the Maine Med campus in Scarborough. The State contracts with clinics, which are paid 100% with state dollars. That is a reimbursable service under Medicaid.
-A parent stated that his son received IV sedation services through Community Dental. He has dental insurance. The parent hand-carried his son’s medical records to multiple appointments at Community Dental, and took them to the Maine Med Scarborough campus where his son received sedation services. This took an inordinate amount of work and money to accomplish. This parent stated that it appears that if you have a middle class or well-to-do, intact family, you get one kind of service. If you don’t have that, you don’t get it.
Cullen: It sounds like this group would greatly benefit from spending some time on dental services. As we wrap up I wanted to ask you, Matt, do you have any closing thoughts, perhaps thoughts that have come to you between when this was published and now?
Matt: I keep going back to all of this information. I had one follow-up article after I published this story about the Department’s response. Last March I had asked for information regarding how many people are in Robbie and Kyle’s situation. The response I received was essentially that they didn’t have the information to provide. I would think the information lies in MaineCare billing, it’s somewhere, but it’s obviously not available to the general public who could then use it to problem-solve, or bring these situation to light. That’s what I was trying to do with the story. I didn’t have all of the information I needed to make a numerical case, but that would be of help to the Maine public.
Cullen: I want to thank you, Matt, for all your research for that story. You painted a great picture in your article, which generated a healthy dialogue today. Thank you for your work, on this article, and others. I hope you will continue to explore this topic. We’re working to better determine where those pinch points are, and someone looking at the system neutrally will better help us get there. Thank you!
[Large round of applause]
End of presentation.
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Cullen: It’s great to have representation from DHHS around the table; thank you for being here today!
Julian Baer: I don’t have any prepared remarks for today. I just wanted to attend, to be here, and to listen. It’s easy when you don’t hear things from the Department to think that nothing is going on. I want you all to know that crisis services is a significant issue we’re working on.
Cullen: Julian, thank you for being here. I’m glad you were here to attend and listen – that’s great. I hope you continue to attend. DHHS and OADS is a vital source of information on which parents around this table depend. Having Department representation at these meetings is important in ensuring an inclusive dialogue, from which everyone benefits. Thank you again for being here. Does anyone have any updates related to OADS they would like to share?
-It was stated that there is movement on self-directed services.
Bonnie-Jean: Self-directed services is part of a reauthorization bill being considered in Congress. Last time it was reauthorized for five years; the discussion in Congress now is whether there is the will to reauthorize for five years, or perhaps a shorter period of time. One of the entities that did research about self-directed services is a group called Mathematica. They did extensive research about how that money has been used in different states, including Maine. Very little in Maine has been applied to the ID/DD area. We’ve just provided that information to our Delegation and are asking for their advocacy around passing the bill. My hope is that it will be reauthorized and we can advocate in Maine to have some of that money follow people with ID/DD; that’s where we’ll have to put our thinking hats on in this group. It’s the EMPOWER Care Act (there are versions of this bill in both the Senate and House). Senator Collins is a co-sponsor of the Senate bill, and is currently the only member of Maine’s delegation who has signed onto the bill.
-Teague Morris with Senator King’s office stated that he was taking notes and would pass them along to Senator King.
Lydia: This week is DSP (Direct Support Professional) recognition week. I hope everyone has the opportunity to thank their DSPs for all of their hard work. I can also provide an update about where we are with regulatory changes. There are three sets of regulations that are still pending. We provided comments but haven’t seen the Department’s response. One was Targeted Case Management rule changes, which removed certain covered activities including financial consulting, data entry, any time spent recording or providing documentation, prepping things, among others. We’ve talked here before about the Maine Background Check Center – we have concerns about that process, but the regulations pertaining to how that is supposed to work are still in limbo. The children’s psychiatric residential treatment facility regulations haven’t come out either. There are also some changes to Section 21 that are coming down the line, including the rate increases, for which everyone is eagerly waiting. Once the rules are promulgated, they will be retroactive to 7/1/18. There are other changes to Section 21 that have been sent to the Attorney General’s office before being posted for public comment. One of the major changes included in those rules is that all homes will have to be licensed by 1/1/2020. Right now, one and two-bed homes are not required to be licensed. This would also include people who own their own home. There are some positive things as well, including a process for requesting single person placements, increases to the cap on community and work supports, and a direct process to appeal your priority status. We have some concerns about the changes, but this is another opportunity to be proactive. We know it’s coming, so it’s a good opportunity to get aligned about the things on which we all agree, in order to speak with one unified voice.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: Thank you for being here, Luc! It’s wonderful to have OCFS around the table. Do you have any updates for the group?
Luc Nya: I’m with OCFS Children’s Behavioral Health Services. OCFS has engaged Public Consulting Group to assist us in doing a thorough assessment of Children’s Services, including the whole continuum of Children’s Behavioral Health. I have a handout for folks, because we’re welcoming input from everyone. Anyone interested in being part of this process, can include their information on the sheet going around the table. I will also send this to Cullen for inclusion in the minutes (click here).
Lydia: Does this include Child Development Services (CDS)?
Luc: I didn’t go into that level of detail, but that’s something you can definitely ask Public Consulting Group.
SMACT (Southern Maine Advisory Council on Transition) –
Kathy Adams: October 5th is the first SMACT meeting of the year. Bob and Pam from Group Mainstream are coming to speak with the group about shared living. The meeting will be held at the Martin’s Point Community Room.
Disability Rights Maine (DRM) - drme.org
Lauren Wille: I wanted to introduce our new Portland Advocate.
Foxfire Buck: I just got started, but I’m excited to get to work advocating for people in the southern Maine area.
Lauren: We still continue to meet with OADS and OMS (Office of MaineCare Services) about continuing issues involving transportation, specifically around issues like that lack of notice for cancellations, appeal rights, and escort attendant issues. We continue to meet with the Department to raise these concerns. If anyone has any issues they would like us to address regarding transportation, please let us know. The Department sent out a letter to transportation brokers, reminding them of the responsibility they have to provide written notification to people about changes or cancellation of transportation, including the right to appeal.
Lydia: Are you only assessing individual cases, or would you consider looking at a class, a group of people?
Lauren: It’s definitely something we’re considering. We have a lot of general issues that affect more people. It’s a constant discussion at DRM about the best way to consider this.
Cullen: We have been trying for a while to get LogistiCare here to present. Transportation continues to be an issue for people and I’m hopeful that they can present at a meeting in the very near future.
State Legislature Update:
Lydia Dawson – Maine Association for Community Service Providers (MACSP): We’re still hoping to meet with the gubernatorial candidates. On 9/24, the Maine Association for Nonprofits (MANP) is holding a Nonprofit and Philanthropic Gubernatorial Forum, in Bangor. I encourage you to reach out to MANP with questions for the candidates.
Federal Update:
Cullen: As I’ve mentioned at previous meetings, both the House and Senate FY 19 T-HUD bills are favorable, include significant appropriations above the President’s budget request, and provide increases to HUD programs versus FY 18 enacted funding. However, the House bill would not provide enough funding to fund all Section 8 renewals, whereas the Senate bill, which it passed in early August, would.
Announcements:
- The 2018 MACSP Conference, Technology for Inclusiveness and Excellence, is occurring on 10/24 and 10/25 in Portland.
The next meeting will be on **October 15, 2018**
**Please note this is the third Monday of the month due to the holiday on our regular meeting date**
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 Speakers and Topic TBD.
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).