November 19, 2018
Minutes
Minutes
Present: Lydia Dawson, Mark Kemmerle, Peter Stuckey, David Cowing, Patrick Moore, Kim Humphrey, Andy Taranko, Sarah Dion, Diane Boas, Katrina Ringrose, Luc Nya, Erin Rowan, Margaret Cardoza, Pater Stuckey, Ariel Linet, Bob Carpenter, Ed and Suellen Doggett, Cullen Ryan, Vickey Rand. Via Zoom – (Bangor): Andrew Cassidy. (Brunswick): Colleen Gilliam, Ray Nagel, Alli Vercoe, and Teague Morris. (Winthrop): Cathy Dionne and Cheryl Stalilonis. (Auburn): Ann Bentley. Misc. sites: Helen Hemminger, Kathy Adams, and two interpreters (Paula and David).
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: Lydia Dawson, Executive Director, Maine Association for Community Service Providers (MACSP). meacsp.org Topic: Due Process – Parent Grievance and Appeals Training.
Lydia Dawson: Today I’m here to present on due process. Oftentimes when parents and family members receive decisions for their loved ones that they don’t agree with they don’t know what to do, or what tools they might be able to utilize to push back on those decisions. The Due Process Toolkit I’m presenting today provides information and tools that you can use, including information on grievances, member appeals, and reasonable accommodations, and the differences between them.
Begin Presentation (Click here to view the presentation):
-It was asked who employs the officer that oversees an administrative hearing.
Lydia: This person is considered third-party neutral, and is employed by DHHS to be a third-party, neutral entity. I’ve attended many of these hearings and even when I did not agree with the decision I never felt like they were biased.
Member Appeals: It’s important to know you have member appeals in your tool box. If you don’t know who to contact regarding a member appeal you can contact MaineCare Member Services (1-800-977-6740 or via email). This is your first tool in your toolbox. They will then schedule you for an administrative hearing.
Grievances: Also, sometimes people forget that grievances belong to the member – it can’t be about something that was said or done to parents, family members, etc. However, grievances are very broad. It’s essentially “I don’t like what’s happening.” Because grievances are so broad they have a lot of procedural steps related to them. Grievances can get lost, it’s really important to engage in dialogue, ask the members how they’re feeling, what the concerns are, etc. If you’re not able to resolve it then you want to document it as a grievance. The Department’s General Grievance form can be used as a template, but it doesn’t have to be used. Grievances can be made orally too.
Reasonable Accommodations/Modifications: – Per federal law, if you are being discriminated against because you can’t access/utilize a benefit due to your disability, the person creating the benefit has to make a reasonable accommodation, so you can access it. For instance, libraries are a public benefit. If the library has stairs and you’re in a wheelchair, you can’t access the library the way other people can so you’re being discriminated against. A reasonable accommodation for this would be a ramp. It works the same for intellectual/developmental disabilities (ID/DD). If the Department were to send out correspondence explaining benefit changes or restrictions, but they’re written using jargon that’s hard to understand, you could ask for a reasonable accommodation for it to be put in plain language, and/or have an extension to any timeframe due to not being able to fully understand the document.
-A parent stated that his daughter disconnected her seatbelt 10-15 seconds before her ride ended. A complaint was made to DHHS on a Monday or Tuesday, and by Friday of the same week her services were terminated. He stated that it was an extremely adverse court trial. He stated that because of his daughter’s behaviors, and limiting command of language, she has to be supervised because she’s a danger to herself or others. He stated that during the Administrative Hearing the Director of the transportation company didn’t want to provide someone to assist her and used very derogatory language regarding his daughter. He got in contact with DRM and Staci Converse contacted him, researched the complaint, and suggested that a reasonable accommodation for this situation would be an attendant. During the second hearing everything was going well, though he felt the bigotry of the Director of the transportation company was still very apparent. He stated that they won the case because of the reasonable accommodation they presented.
Lydia: I think of due process of being a road, a specific path to get to a decision. Sometimes you can get off the path. That’s why this toolkit is so important – knowing your options, the timeframes, and who you’re supposed to contact. We can have different points of view, but what’s important is getting everyone back on the same path. Getting in contact with advocacy groups and people who can help you get back on that path when you’ve been pushed off of it, or you wander off of it, is very important. If you’re reviewing the materials and have any questions, please don’t hesitate to contact me or Disability Rights Maine.
Cullen: We’ll include all of this information with the minutes. Lydia, thank you very much. This was a very clear, crisp presentation; thanks for putting this together, well done!
End of presentation.
(Round of applause)
Featured Speaker: Katrina Ringrose, Children’s Advocate, Disability Rights Maine. drme.org Topic: Children’s Psychiatric Residential Treatment Facility (PRTF) and licensing regulations update.
Katrina Ringrose: I came prepared to talk about the licensing regulations. I can also talk a bit about Maine’s proposed creation of a children’s Psychiatric Residential Treatment Facility (PRTF). I’m interested in what the group wants to hear.
-The group offered the following topics about which they’d like to hear: Information on where Children’s services end and adult services begin. Clarity on what’s final, and for what can we still advocate. Missed opportunities in children’s services (early intervention, etc.) that can lead to extremely challenging behaviors when someone transitions to adult services. Information on ways in which challenging behaviors in children can be addressed. Over prescribing and overuse of edibles in reinforcement plans. Information on Public Consulting Group (PCG) and the work it is doing assessing Children’s Behavioral Health services.
Katrina: Children’s Behavioral Health services in Maine needs a lot of attention, and very little attention has been paid to these services in a very long time. There are many knowledgeable, passionate people in state government, but that whole department has been dismantled and doesn’t have the tools it needs to create a functioning system. We entered into negotiations with the State of Maine a while ago now regarding the huge waitlists for Home and Community Based Services (HCBS), which for children, are Section 28 and Section 65 services. We heard so many stories from people who shared our concerns that it took years to access these services at all. Then, we heard that when some people finally receive services the services didn’t match their needs. This is an issue that doesn’t get talked about a lot – when you finally get off the waitlist, meet the agency, develop a plan, and then they say they have 10 hours to offer you. You accept because something is better than nothing, but it’s not what’s going to meet the need. You should be able to make the informed decision to accept the 10 hours of services while still waiting for what is really needed. We don’t have a clear understanding of kids who are connected with providers but still have very high unmet needs, many of whom are accessing emergency care in the interim. We agreed after discussions that we need an expert, someone to help us really assess our system, including access to it. CMS (Centers for Medicare and Medicaid Services) says you have a right as a child to services with reasonable promptness (defined as 120 days). Kids were not getting access to services with reasonable promptness, and there were issues with the quantity of services, quality of services, and staff turnover in services. We hear from families that they want their children to be with them in their homes and in the community accessing the services they need. Public Consulting Group (PCG) has a contract with DHHS to do this assessment and identify short and long-term goals to improve the system. There were multiple ways in which PCG received feedback including individual interviews with stakeholders. They also had multiple iterations of a web-based survey, and in the end, there were almost 1,000 surveys analyzed. There were a series of town hall meetings that were hosted by PCG, and in these meetings they presented some initial findings and twenty of their initial recommendations. Generally, we feel the findings are pretty accurate and that the recommendations seem to be a good fit. However, much work is left to be done with those recommendations to make them more clear. We’re excited to see how this report is finalized and how we work together with all stakeholders to push these recommendations forward. We’re looking at a new incoming administration so it’s the perfect time for change. The final report is due to OCFS (Office of Child and Family Services) by the end of the year; however, how OCFS chooses to release that report is still unclear.
-It was asked what role the Department of Education (DOE) plays in PCG’s work.
Katrina: They play a huge role in the overall system, but this is not an area into which PCG specifically looked.
-It was asked if PCG’s work examined the proposal to move CDS (Child Development Services) from the Department into the school system.
Katrina: No, they did not address that. PCG’s work is one tool, but not the only tool we have or the only one we should use. This should give us a good foundation, and as a state we’ll have to decide what makes the most sense. We’ll want to ensure we’re working with all of our stakeholders and you throughout this process.
Lydia: The town halls painted a very accurate picture about the feeling in the community. Though, I was hoping there would be more in-depth data and information shared. Are they looking at other information?
Katrina: The findings they shared aren’t representative of the entire report and their findings. I think you’ll find that there is information about the unmet needs of people receiving services and recommendations pertaining to that.
I want to point out a few things – Maine statues for children are spread across many different areas. It’s hard to understand when regulations are walked back, or changes are made which regulations apply to which statute(s). We would have preferred the State look at proposing a comprehensive children’s statute before proposing new rules. We hope that will move forward this legislative session – the work has already been done.
Lydia: Where could people access that comprehensive children’s statute?
Katrina: We worked collaboratively with the Department on this years ago. It’s a document that should be fluid and have lots of stakeholder input, and we want it to be transparent. I can connect with you about this.
Katrina: We have some new licensing rules for children’s residential treatment services, which contain some good things including more protections for kids. There are also a few concerning things, and areas in which they’re not as consistent with the Rights of Recipients for children. The licensing rules, which are now final, are around behavior management in residential treatment settings. There are about 300 residential treatment beds for children in the state. There are core principles that apply to all residential services, then there are special modules that apply to special programs – there are special modules for mental health programs, substance use disorder treatment programs, and for secure capacity.
Looking at the core principals around behavior management – for many years there’s been confusion regarding what is considered isolation and what is considered seclusion regarding emergency interventions. These rules do a good job clarifying isolation and under what conditions it can be used. With isolation, egress must be allowed. There are some residential treatment programs that would use isolation and also use seclusion, and not refer to it as seclusion. If you have an isolation room but you hold the door shut that’s actually seclusion. Seclusion is very well defined in the rule as locked isolation - holding a door shut, a staff person standing in front of a door, so a person can’t leave the room, etc., are all considered seclusion. Having a locked door isn’t seclusion, but anytime you’re denying egress it is. Seclusion is prohibited in residential treatment facilities except for psychiatric residential treatment facilities (PRTFs). There is a lot of good language in the rules around positive behavior support plans, and specific requirements around crisis plans and interventions – requiring residential providers to have policies that address these that are reviewed with the child and parents at intake. The other thing that’s good is it requires parent and guardian notification when restraint is used. Previously, the licensing rules themselves didn’t explicitly state parents and guardians had to be informed when their children were restrained. The other piece is that debriefing needs to occur with the child who was subject to an emergency intervention, as well as with the staff and the family/guardian.
The licensing rules also include language regarding secure capacity – when a child is locked in and not able to leave the program. We haven’t had one of these programs in Maine for many years. The new rules talk about secure capacity, with Level 1 being very similar to what used to be in the rule in terms of having an increased staffing ratio, the requirement for there to be a nurse, and a school onsite. Level 2 secure capacity is the Psychiatric Residential Treatment Facility (PRTF). That has all the same requirements as Level 1, but also requires the agency delivering the services to be nationally accredited. I don’t believe any agencies in Maine are nationally accredited currently.
Lydia: Where did delayed egress fall in the licensing rules? Delayed egress would include the doors where you press the bar on the door to get out, an alarm sounds, and the door remains locked for a minute or two before it unlatches.
Katrina: In my opinion delayed egress means it’s locked. We commented that the Department needed to add language about delayed egress and in what situations it could be used. Unfortunately, they responded that it’s not mentioned elsewhere in the rule (which was the reason DRM commented on it), and the Department stated that a definition of delayed egress would not add further clarity to the rule so no changes were made. There are multiple programs that have delayed egress doors, but there’s no definition or explanation regarding when they can be used. We will continue to say that this means locked and they must meet Level 1 secure capacity requirements.
-It was asked if Level 1 and Level 2 are both considered institutional settings.
Katrina: Yes. I think that residential treatment programs are generally institutional settings, because people are not receiving services in home and community settings.
-It was asked how mental health is defined pertaining to these rules, and whether it is inclusive of ID/DD.
Katrina: In many other states there are a series of residential treatment programs with various specialties, and they’re laid out in the rules. In Maine, the way they’re licensed and managed they aren’t defined that way. There are two primary residential treatment facility providers that serve children with ID/DD – Spurwink and KidsPeace, but they don’t solely serve children with ID/DD.
Ariel Linet (DRM): I don’t think there are any residential treatment providers who serve kids with ID/DD that don’t also serve kids with mental health diagnoses. On the adult side, DHHS has SAMHS (Substance Abuse and Mental Health Services) and OADS (Office of Aging and Disability Services) so services are split, for children everything is under OCFS. There are plenty of kids who have needs in both categories.
-It was asked if there is coordination with medical providers to ensure that the behaviors being exhibited aren’t solely related to a medical condition.
Katrina: It’s certainly spelled out in the Rights of Recipients and the licensing rules that you have to fully assess children, and that includes a medical assessment. However, we’ve been involved in situations in which medical issues have been playing a role in behaviors. In the adult world you have the behavior regulations. In the children’s world there’s a requirement that there be some type of behavior regulations for children with ID/DD, but this hasn’t been actualized – the Department proposed them but didn’t proceed with promulgating them. This is an unregulated area for behavioral supports for children, both in residential facilities and in the community. Section 28 and 65 services aren’t supposed to use any emergency behavioral interventions because there are no regulations in place. There are circumstances in which they occur, and they are reported to the Department, but there aren’t rules governing them which is problematic. Reportable events requirements were also added to the licensing rule, adding clarity around those and what they look like. PRNs have also been an area in which there has been confusion, specifically the thought that residential programs couldn’t administer them. This rule answers questions around that and provides guidance about how PRNs could be used.
-It was asked if there is overlap between the IDEA (Individuals with Disabilities Education Act) regulations through the DOE and the requirements to which Katrina referred.
Katrina: There isn’t, but there ought to be. This is where we need to back up and address this in a comprehensive statute.
Ariel: In settings such as a special purpose private school on a residential campus, all of those rules and statues would apply. Often providers would try to say they’ll keep things separate, but these programs are so intertwined there is a lot of overlap. We’ve done a lot of work with providers on this. Seclusion is permitted in educational settings, whereas it’s prohibited in residential settings. It can be tricky.
-It was asked if there was any more information about the meetings with OCFS in which they stated the PRFT would include 20 beds.
Katrina: All of the details such as these are very unclear. OCFS based the rate off of a 20-bed facility, which is very concerning. We’re in 2018 and looking at building more institutions, when our focus needs to be on ensuring access to community-based services. We’re hoping to know more as it moves forward as well.
Lydia: MACSP wouldn’t represent an institutional provider, but I attended one of these meetings and discovered that not only was the rate built off of 20 beds, the rate is also structured with incentive to keep the facility full.
-It was stated that it’s important to understand that these new rules opened up the possibility of this category, but providers would be creating and running PRTFs not the State. Unless a provider steps up to create and run one, it won’t exist.
Katrina: There is still a lot of room for advocating against the creations of PRTFs. We want to send a strong message to the new administration that this is not good for Maine children and we need to focus on HCBS.
Peter Stuckey: Is there anything in the licensing regulations about transition?
Katrina: The regulations include language about discharge planning but not transition specifically. There are some specific recommendations in the PCG report around transitions and how to try to make them more effective.
Peter: Is there precedent for that to be in licensing?
Katrina: Not necessarily for these licensing rules because they serve all children, but I don’t know.
Peter: I’m just thinking of ways to provide some incentive. It appears there’s this incredible disconnect even though things are under the same roof.
Katrina: It’s a huge problem, one we’re constantly addressing.
-It was stated that this is a delicate conversation because there are lots of parents whose children are out of state due to Maine’s capacity issues who may want these facilities.
Katrina: There are kids placed in residential treatment facilities out of state. However, creating PRTFs will not solve the problem we’re trying to solve.
-It was stated that the system is stuck at every point. If more kids could be served in their homes and communities it would free up residential placements for kids out of state. This would create a least-restrictive system, for which we’re striving.
Katrina: There are 55 Maine children in out-of-state placements. A few years ago, these children would be placed in New England, now they’re in Utah, Arizona, etc. It’s a matter of where there are programs with openings.
-It was asked how much of this is this reflective of what’s happening in the school system.
Katrina: It’s all interrelated.
Lydia: That’s why it’s hard to feel confident with PCG’s report, if they’re not taking all of this into account.
Ariel: The PCG report, as Katrina was saying, isn’t intended to be a cure-all. It will say “here’s an area that needs more exploration.” Everything is very interrelated. It’s going to take an interdisciplinary approach. We’re hopeful the recommendations will be valuable, but they won’t be all encompassing.
Katrina: That report is one tool, and then we have a bunch of other tools and experts who will really need to move it forward.
Cullen: The whole point of the Coalition is to get these good conversations going. We’re almost out of time but it appears there is interest in continuing this great discussion. Katrina, are you available for our next meeting on December 10th to continue this dialogue?
Katrina: That should work, yes.
Cullen: Thank you very much, you got to a lot of the issues that this group expressed, and this was a very engaging topic. Well done!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads and the Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: Amy MacMillan, Acting Director of OADS, reached out to me and is interested in presenting an update on dental services at the January 14th, 2019 meeting. This is wonderful - it will be great to have OADS in attendance and hear updates, specifically regarding dental services which has been an area of interest for the Coalition for quite some time. I hope to have great attendance at that meeting.
Election Results & State Legislature Update:
Cullen: As you know the mid-term elections took place on November 6th. Senator King and Congresswoman Pingree both won reelection handily. It was announced last week that Jared Golden won his race for Maine’s second congressional district, defeating incumbent Bruce Poliquin. Jared was at last month’s meeting and expressed his desire to listen to the needs of people with ID/DD and work to ensure people with disabilities have a seat at the table. We are also looking at an new incoming administration, with Janet Mills winning her gubernatorial election and having democratic control in both the Maine House and Senate. This presents opportunities to think together about how we can inform the incoming Administration and the new Legislature regarding what they can do to prioritize these issues and strategies to address them. I’m hoping to review our DD CoC model and the Blueprint for Effective Transition with Governor-elect Mills’ transition team. I want you to take a good look at those over the next couple of weeks and provide feedback regarding any areas in need of updating.
Lydia Dawson – Maine Association for Community Service Providers (MACSP): I’ll add that it’s a great idea in these early months to reach out to your legislators to begin developing those relationships and starting the education process.
As I did for the last meeting, I’ve included rule change information and plain language updates in a one-page handout. (Click here for Lydia’s information on rule changes). Due to time I’ll just highlight that the Department has proposed non-emergency transportation regulations which include some pretty dramatic changes: Section 113 (Non-Emergency Transportation) have proposed rule changes to require the person, their parent or guardian, or their residential provider to provide an “Escort” when the Broker decides the person needs someone to ride with them. It also limits transportation to school for children with IEPs, removes transportation for families to see their children in residential placements, and allows the Broker to deny transportation to providers they decide are too far away. The public hearing is this Monday, November 26, 2018 at 9am at the Augusta Armory (179 Western Ave, Augusta, ME 04330). Written comments are due by December 6, 2018 to Trista Collins: [email protected]. These proposed changes are unacceptable, and potentially discriminatory as we discussed earlier regarding reasonable accommodations. I really hope people will attend the public hearing on Monday and speak out.
Cullen: Thank you for this information, Lydia. We will send out an action alert to the Coalition.
Lydia: I can put together some talking points as well.
Cullen: Thank you that would be very helpful!
Other Business:
The next meeting will be on December 10, 2018, 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: Katrina Ringrose, Children’s Advocate, Disability Rights Maine. Topic: A continuation of the discussion regarding children’s services, including regulations and Children’s Psychiatric Residential Treatment Facilities (PRTFs). And Kim Humphrey, Community Connect Maine. Topic: The Postcard Project.
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. Auxiliary aids and services are available to individuals with disabilities on request: [email protected] or (207) 879-0347. Please provide at least one business day’s advance notice prior to meetings so we can arrange accommodations.
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: Lydia Dawson, Executive Director, Maine Association for Community Service Providers (MACSP). meacsp.org Topic: Due Process – Parent Grievance and Appeals Training.
Lydia Dawson: Today I’m here to present on due process. Oftentimes when parents and family members receive decisions for their loved ones that they don’t agree with they don’t know what to do, or what tools they might be able to utilize to push back on those decisions. The Due Process Toolkit I’m presenting today provides information and tools that you can use, including information on grievances, member appeals, and reasonable accommodations, and the differences between them.
Begin Presentation (Click here to view the presentation):
-It was asked who employs the officer that oversees an administrative hearing.
Lydia: This person is considered third-party neutral, and is employed by DHHS to be a third-party, neutral entity. I’ve attended many of these hearings and even when I did not agree with the decision I never felt like they were biased.
Member Appeals: It’s important to know you have member appeals in your tool box. If you don’t know who to contact regarding a member appeal you can contact MaineCare Member Services (1-800-977-6740 or via email). This is your first tool in your toolbox. They will then schedule you for an administrative hearing.
Grievances: Also, sometimes people forget that grievances belong to the member – it can’t be about something that was said or done to parents, family members, etc. However, grievances are very broad. It’s essentially “I don’t like what’s happening.” Because grievances are so broad they have a lot of procedural steps related to them. Grievances can get lost, it’s really important to engage in dialogue, ask the members how they’re feeling, what the concerns are, etc. If you’re not able to resolve it then you want to document it as a grievance. The Department’s General Grievance form can be used as a template, but it doesn’t have to be used. Grievances can be made orally too.
Reasonable Accommodations/Modifications: – Per federal law, if you are being discriminated against because you can’t access/utilize a benefit due to your disability, the person creating the benefit has to make a reasonable accommodation, so you can access it. For instance, libraries are a public benefit. If the library has stairs and you’re in a wheelchair, you can’t access the library the way other people can so you’re being discriminated against. A reasonable accommodation for this would be a ramp. It works the same for intellectual/developmental disabilities (ID/DD). If the Department were to send out correspondence explaining benefit changes or restrictions, but they’re written using jargon that’s hard to understand, you could ask for a reasonable accommodation for it to be put in plain language, and/or have an extension to any timeframe due to not being able to fully understand the document.
-A parent stated that his daughter disconnected her seatbelt 10-15 seconds before her ride ended. A complaint was made to DHHS on a Monday or Tuesday, and by Friday of the same week her services were terminated. He stated that it was an extremely adverse court trial. He stated that because of his daughter’s behaviors, and limiting command of language, she has to be supervised because she’s a danger to herself or others. He stated that during the Administrative Hearing the Director of the transportation company didn’t want to provide someone to assist her and used very derogatory language regarding his daughter. He got in contact with DRM and Staci Converse contacted him, researched the complaint, and suggested that a reasonable accommodation for this situation would be an attendant. During the second hearing everything was going well, though he felt the bigotry of the Director of the transportation company was still very apparent. He stated that they won the case because of the reasonable accommodation they presented.
Lydia: I think of due process of being a road, a specific path to get to a decision. Sometimes you can get off the path. That’s why this toolkit is so important – knowing your options, the timeframes, and who you’re supposed to contact. We can have different points of view, but what’s important is getting everyone back on the same path. Getting in contact with advocacy groups and people who can help you get back on that path when you’ve been pushed off of it, or you wander off of it, is very important. If you’re reviewing the materials and have any questions, please don’t hesitate to contact me or Disability Rights Maine.
Cullen: We’ll include all of this information with the minutes. Lydia, thank you very much. This was a very clear, crisp presentation; thanks for putting this together, well done!
End of presentation.
(Round of applause)
Featured Speaker: Katrina Ringrose, Children’s Advocate, Disability Rights Maine. drme.org Topic: Children’s Psychiatric Residential Treatment Facility (PRTF) and licensing regulations update.
Katrina Ringrose: I came prepared to talk about the licensing regulations. I can also talk a bit about Maine’s proposed creation of a children’s Psychiatric Residential Treatment Facility (PRTF). I’m interested in what the group wants to hear.
-The group offered the following topics about which they’d like to hear: Information on where Children’s services end and adult services begin. Clarity on what’s final, and for what can we still advocate. Missed opportunities in children’s services (early intervention, etc.) that can lead to extremely challenging behaviors when someone transitions to adult services. Information on ways in which challenging behaviors in children can be addressed. Over prescribing and overuse of edibles in reinforcement plans. Information on Public Consulting Group (PCG) and the work it is doing assessing Children’s Behavioral Health services.
Katrina: Children’s Behavioral Health services in Maine needs a lot of attention, and very little attention has been paid to these services in a very long time. There are many knowledgeable, passionate people in state government, but that whole department has been dismantled and doesn’t have the tools it needs to create a functioning system. We entered into negotiations with the State of Maine a while ago now regarding the huge waitlists for Home and Community Based Services (HCBS), which for children, are Section 28 and Section 65 services. We heard so many stories from people who shared our concerns that it took years to access these services at all. Then, we heard that when some people finally receive services the services didn’t match their needs. This is an issue that doesn’t get talked about a lot – when you finally get off the waitlist, meet the agency, develop a plan, and then they say they have 10 hours to offer you. You accept because something is better than nothing, but it’s not what’s going to meet the need. You should be able to make the informed decision to accept the 10 hours of services while still waiting for what is really needed. We don’t have a clear understanding of kids who are connected with providers but still have very high unmet needs, many of whom are accessing emergency care in the interim. We agreed after discussions that we need an expert, someone to help us really assess our system, including access to it. CMS (Centers for Medicare and Medicaid Services) says you have a right as a child to services with reasonable promptness (defined as 120 days). Kids were not getting access to services with reasonable promptness, and there were issues with the quantity of services, quality of services, and staff turnover in services. We hear from families that they want their children to be with them in their homes and in the community accessing the services they need. Public Consulting Group (PCG) has a contract with DHHS to do this assessment and identify short and long-term goals to improve the system. There were multiple ways in which PCG received feedback including individual interviews with stakeholders. They also had multiple iterations of a web-based survey, and in the end, there were almost 1,000 surveys analyzed. There were a series of town hall meetings that were hosted by PCG, and in these meetings they presented some initial findings and twenty of their initial recommendations. Generally, we feel the findings are pretty accurate and that the recommendations seem to be a good fit. However, much work is left to be done with those recommendations to make them more clear. We’re excited to see how this report is finalized and how we work together with all stakeholders to push these recommendations forward. We’re looking at a new incoming administration so it’s the perfect time for change. The final report is due to OCFS (Office of Child and Family Services) by the end of the year; however, how OCFS chooses to release that report is still unclear.
-It was asked what role the Department of Education (DOE) plays in PCG’s work.
Katrina: They play a huge role in the overall system, but this is not an area into which PCG specifically looked.
-It was asked if PCG’s work examined the proposal to move CDS (Child Development Services) from the Department into the school system.
Katrina: No, they did not address that. PCG’s work is one tool, but not the only tool we have or the only one we should use. This should give us a good foundation, and as a state we’ll have to decide what makes the most sense. We’ll want to ensure we’re working with all of our stakeholders and you throughout this process.
Lydia: The town halls painted a very accurate picture about the feeling in the community. Though, I was hoping there would be more in-depth data and information shared. Are they looking at other information?
Katrina: The findings they shared aren’t representative of the entire report and their findings. I think you’ll find that there is information about the unmet needs of people receiving services and recommendations pertaining to that.
I want to point out a few things – Maine statues for children are spread across many different areas. It’s hard to understand when regulations are walked back, or changes are made which regulations apply to which statute(s). We would have preferred the State look at proposing a comprehensive children’s statute before proposing new rules. We hope that will move forward this legislative session – the work has already been done.
Lydia: Where could people access that comprehensive children’s statute?
Katrina: We worked collaboratively with the Department on this years ago. It’s a document that should be fluid and have lots of stakeholder input, and we want it to be transparent. I can connect with you about this.
Katrina: We have some new licensing rules for children’s residential treatment services, which contain some good things including more protections for kids. There are also a few concerning things, and areas in which they’re not as consistent with the Rights of Recipients for children. The licensing rules, which are now final, are around behavior management in residential treatment settings. There are about 300 residential treatment beds for children in the state. There are core principles that apply to all residential services, then there are special modules that apply to special programs – there are special modules for mental health programs, substance use disorder treatment programs, and for secure capacity.
Looking at the core principals around behavior management – for many years there’s been confusion regarding what is considered isolation and what is considered seclusion regarding emergency interventions. These rules do a good job clarifying isolation and under what conditions it can be used. With isolation, egress must be allowed. There are some residential treatment programs that would use isolation and also use seclusion, and not refer to it as seclusion. If you have an isolation room but you hold the door shut that’s actually seclusion. Seclusion is very well defined in the rule as locked isolation - holding a door shut, a staff person standing in front of a door, so a person can’t leave the room, etc., are all considered seclusion. Having a locked door isn’t seclusion, but anytime you’re denying egress it is. Seclusion is prohibited in residential treatment facilities except for psychiatric residential treatment facilities (PRTFs). There is a lot of good language in the rules around positive behavior support plans, and specific requirements around crisis plans and interventions – requiring residential providers to have policies that address these that are reviewed with the child and parents at intake. The other thing that’s good is it requires parent and guardian notification when restraint is used. Previously, the licensing rules themselves didn’t explicitly state parents and guardians had to be informed when their children were restrained. The other piece is that debriefing needs to occur with the child who was subject to an emergency intervention, as well as with the staff and the family/guardian.
The licensing rules also include language regarding secure capacity – when a child is locked in and not able to leave the program. We haven’t had one of these programs in Maine for many years. The new rules talk about secure capacity, with Level 1 being very similar to what used to be in the rule in terms of having an increased staffing ratio, the requirement for there to be a nurse, and a school onsite. Level 2 secure capacity is the Psychiatric Residential Treatment Facility (PRTF). That has all the same requirements as Level 1, but also requires the agency delivering the services to be nationally accredited. I don’t believe any agencies in Maine are nationally accredited currently.
Lydia: Where did delayed egress fall in the licensing rules? Delayed egress would include the doors where you press the bar on the door to get out, an alarm sounds, and the door remains locked for a minute or two before it unlatches.
Katrina: In my opinion delayed egress means it’s locked. We commented that the Department needed to add language about delayed egress and in what situations it could be used. Unfortunately, they responded that it’s not mentioned elsewhere in the rule (which was the reason DRM commented on it), and the Department stated that a definition of delayed egress would not add further clarity to the rule so no changes were made. There are multiple programs that have delayed egress doors, but there’s no definition or explanation regarding when they can be used. We will continue to say that this means locked and they must meet Level 1 secure capacity requirements.
-It was asked if Level 1 and Level 2 are both considered institutional settings.
Katrina: Yes. I think that residential treatment programs are generally institutional settings, because people are not receiving services in home and community settings.
-It was asked how mental health is defined pertaining to these rules, and whether it is inclusive of ID/DD.
Katrina: In many other states there are a series of residential treatment programs with various specialties, and they’re laid out in the rules. In Maine, the way they’re licensed and managed they aren’t defined that way. There are two primary residential treatment facility providers that serve children with ID/DD – Spurwink and KidsPeace, but they don’t solely serve children with ID/DD.
Ariel Linet (DRM): I don’t think there are any residential treatment providers who serve kids with ID/DD that don’t also serve kids with mental health diagnoses. On the adult side, DHHS has SAMHS (Substance Abuse and Mental Health Services) and OADS (Office of Aging and Disability Services) so services are split, for children everything is under OCFS. There are plenty of kids who have needs in both categories.
-It was asked if there is coordination with medical providers to ensure that the behaviors being exhibited aren’t solely related to a medical condition.
Katrina: It’s certainly spelled out in the Rights of Recipients and the licensing rules that you have to fully assess children, and that includes a medical assessment. However, we’ve been involved in situations in which medical issues have been playing a role in behaviors. In the adult world you have the behavior regulations. In the children’s world there’s a requirement that there be some type of behavior regulations for children with ID/DD, but this hasn’t been actualized – the Department proposed them but didn’t proceed with promulgating them. This is an unregulated area for behavioral supports for children, both in residential facilities and in the community. Section 28 and 65 services aren’t supposed to use any emergency behavioral interventions because there are no regulations in place. There are circumstances in which they occur, and they are reported to the Department, but there aren’t rules governing them which is problematic. Reportable events requirements were also added to the licensing rule, adding clarity around those and what they look like. PRNs have also been an area in which there has been confusion, specifically the thought that residential programs couldn’t administer them. This rule answers questions around that and provides guidance about how PRNs could be used.
-It was asked if there is overlap between the IDEA (Individuals with Disabilities Education Act) regulations through the DOE and the requirements to which Katrina referred.
Katrina: There isn’t, but there ought to be. This is where we need to back up and address this in a comprehensive statute.
Ariel: In settings such as a special purpose private school on a residential campus, all of those rules and statues would apply. Often providers would try to say they’ll keep things separate, but these programs are so intertwined there is a lot of overlap. We’ve done a lot of work with providers on this. Seclusion is permitted in educational settings, whereas it’s prohibited in residential settings. It can be tricky.
-It was asked if there was any more information about the meetings with OCFS in which they stated the PRFT would include 20 beds.
Katrina: All of the details such as these are very unclear. OCFS based the rate off of a 20-bed facility, which is very concerning. We’re in 2018 and looking at building more institutions, when our focus needs to be on ensuring access to community-based services. We’re hoping to know more as it moves forward as well.
Lydia: MACSP wouldn’t represent an institutional provider, but I attended one of these meetings and discovered that not only was the rate built off of 20 beds, the rate is also structured with incentive to keep the facility full.
-It was stated that it’s important to understand that these new rules opened up the possibility of this category, but providers would be creating and running PRTFs not the State. Unless a provider steps up to create and run one, it won’t exist.
Katrina: There is still a lot of room for advocating against the creations of PRTFs. We want to send a strong message to the new administration that this is not good for Maine children and we need to focus on HCBS.
Peter Stuckey: Is there anything in the licensing regulations about transition?
Katrina: The regulations include language about discharge planning but not transition specifically. There are some specific recommendations in the PCG report around transitions and how to try to make them more effective.
Peter: Is there precedent for that to be in licensing?
Katrina: Not necessarily for these licensing rules because they serve all children, but I don’t know.
Peter: I’m just thinking of ways to provide some incentive. It appears there’s this incredible disconnect even though things are under the same roof.
Katrina: It’s a huge problem, one we’re constantly addressing.
-It was stated that this is a delicate conversation because there are lots of parents whose children are out of state due to Maine’s capacity issues who may want these facilities.
Katrina: There are kids placed in residential treatment facilities out of state. However, creating PRTFs will not solve the problem we’re trying to solve.
-It was stated that the system is stuck at every point. If more kids could be served in their homes and communities it would free up residential placements for kids out of state. This would create a least-restrictive system, for which we’re striving.
Katrina: There are 55 Maine children in out-of-state placements. A few years ago, these children would be placed in New England, now they’re in Utah, Arizona, etc. It’s a matter of where there are programs with openings.
-It was asked how much of this is this reflective of what’s happening in the school system.
Katrina: It’s all interrelated.
Lydia: That’s why it’s hard to feel confident with PCG’s report, if they’re not taking all of this into account.
Ariel: The PCG report, as Katrina was saying, isn’t intended to be a cure-all. It will say “here’s an area that needs more exploration.” Everything is very interrelated. It’s going to take an interdisciplinary approach. We’re hopeful the recommendations will be valuable, but they won’t be all encompassing.
Katrina: That report is one tool, and then we have a bunch of other tools and experts who will really need to move it forward.
Cullen: The whole point of the Coalition is to get these good conversations going. We’re almost out of time but it appears there is interest in continuing this great discussion. Katrina, are you available for our next meeting on December 10th to continue this dialogue?
Katrina: That should work, yes.
Cullen: Thank you very much, you got to a lot of the issues that this group expressed, and this was a very engaging topic. Well done!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads and the Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: Amy MacMillan, Acting Director of OADS, reached out to me and is interested in presenting an update on dental services at the January 14th, 2019 meeting. This is wonderful - it will be great to have OADS in attendance and hear updates, specifically regarding dental services which has been an area of interest for the Coalition for quite some time. I hope to have great attendance at that meeting.
Election Results & State Legislature Update:
Cullen: As you know the mid-term elections took place on November 6th. Senator King and Congresswoman Pingree both won reelection handily. It was announced last week that Jared Golden won his race for Maine’s second congressional district, defeating incumbent Bruce Poliquin. Jared was at last month’s meeting and expressed his desire to listen to the needs of people with ID/DD and work to ensure people with disabilities have a seat at the table. We are also looking at an new incoming administration, with Janet Mills winning her gubernatorial election and having democratic control in both the Maine House and Senate. This presents opportunities to think together about how we can inform the incoming Administration and the new Legislature regarding what they can do to prioritize these issues and strategies to address them. I’m hoping to review our DD CoC model and the Blueprint for Effective Transition with Governor-elect Mills’ transition team. I want you to take a good look at those over the next couple of weeks and provide feedback regarding any areas in need of updating.
Lydia Dawson – Maine Association for Community Service Providers (MACSP): I’ll add that it’s a great idea in these early months to reach out to your legislators to begin developing those relationships and starting the education process.
As I did for the last meeting, I’ve included rule change information and plain language updates in a one-page handout. (Click here for Lydia’s information on rule changes). Due to time I’ll just highlight that the Department has proposed non-emergency transportation regulations which include some pretty dramatic changes: Section 113 (Non-Emergency Transportation) have proposed rule changes to require the person, their parent or guardian, or their residential provider to provide an “Escort” when the Broker decides the person needs someone to ride with them. It also limits transportation to school for children with IEPs, removes transportation for families to see their children in residential placements, and allows the Broker to deny transportation to providers they decide are too far away. The public hearing is this Monday, November 26, 2018 at 9am at the Augusta Armory (179 Western Ave, Augusta, ME 04330). Written comments are due by December 6, 2018 to Trista Collins: [email protected]. These proposed changes are unacceptable, and potentially discriminatory as we discussed earlier regarding reasonable accommodations. I really hope people will attend the public hearing on Monday and speak out.
Cullen: Thank you for this information, Lydia. We will send out an action alert to the Coalition.
Lydia: I can put together some talking points as well.
Cullen: Thank you that would be very helpful!
Other Business:
- Click here for the flyer for the Maine Organization of Storytelling Enthusiasts (MOOSE) event on 12/12/18
- Aucocisco School and Learning Center Young Adult Social Activities Group Winter Session flyer – this is a new program designed to help people young adults with disabilities through drama and movement.
- It was stated that Maine Parent Federation is holding an upcoming training on supported decision making.
The next meeting will be on December 10, 2018, 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: Katrina Ringrose, Children’s Advocate, Disability Rights Maine. Topic: A continuation of the discussion regarding children’s services, including regulations and Children’s Psychiatric Residential Treatment Facilities (PRTFs). And Kim Humphrey, Community Connect Maine. Topic: The Postcard Project.
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. Auxiliary aids and services are available to individuals with disabilities on request: [email protected] or (207) 879-0347. Please provide at least one business day’s advance notice prior to meetings so we can arrange accommodations.