December 10, 2018
Minutes
Minutes
Present: Bob Carpenter, Mark Kemmerle, David Cowing, Dan Bonner, Ariel Linet, Kim Humphrey, Betsy Mahoney, Scot MacDonald, Beth MyLroie, Lydia Dawson, Olivia Blom, Margaret Cardoza, Peter Stuckey, Jamie Whitehouse, Erin Rowan, Rachel Dyer, Kathy Adams, Cullen Ryan, Vickey Rand. Via Zoom – (Brunswick): Colleen Gilliam, Ray Nagel, and Teague Morris. (Winthrop): Cathy Dionne, Ann Long, and Jean Coltart. Sanford (Brenda Smith), (Auburn): Ann Bentley. Misc. sites: Helen Hemminger, Hillary Steinau, and Staci Lamontagne.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted. The new transcription program was discussed.
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: Kim Humphrey, Community Connect Maine. CommunityConnectME.Org Topic: The Postcard Project.
Kim Humphrey: The Postcard Project is an initiative through Community Connect ME, sponsored by the Maine Developmental Disabilities Council (MDDC). We have created a website dedicated to it: CommunityConnectME.Org
Begin Presentation (Click here to view the presentation):
Kim: The idea of this project is that it will help build relationships. This also provides an opportunity to connect with other people, so you can find what you need more quickly. You can get involved with Community Connect through Facebook and/or our email distribution list. The issues about which we care are often not the top priority for policy making; we’d like to change that. Sending postcards to legislators is one way of raising awareness and education about people with intellectual/developmental disabilities, and the issues that affect them. You can spend all of your time in this field and still not know everything. People are resources. It is a very steep learning curve to understand this system. With everyone reaching out we can reduce this learning curve for our elected officials. These postcards allow people to tailor their messages to their communities and their individual needs. There is also an email template. I welcome your feedback. This has potential to grow so we want to know what works, what doesn’t, and areas that could be improved.
-It was stated that it’s phenomenal that Community Connect put something like this together. This appears to be a great resource for people to connect with and educate legislators – whether it’s for a disability-related issue or another issue. It was stated that this is something that could really grow, even beyond the target population.
-A member of the group stated that she sent postcards to her legislators, opening the door to what will hopefully be a communicative relationship.
-A parent stated that this project has evolved from its first incarnation. People keep thinking of ways that would make it more effective for their purposes. It was stated that this is a great concept and provides a very easy way in which relationships can be fostered and leveraged.
Cullen: Thank you very much, Kim. The more we can reach out to legislators and educate them about people with ID/DD and the issues about which we care the better. Thank you, very well done!
End of presentation.
(Round of applause)
Featured Speaker: Ariel Linet, Staff Attorney, Disability Rights Maine. drme.org Topic: A continuation of the discussion regarding children’s services, including regulations and children’s Psychiatric Residential Treatment Facilities (PRTFs).
Ariel Linet: At the last meeting we had a healthy discussion about Children’s Services. We discussed the assessment that the Office of Child and Family Services (OCFS) has commissioned by Public Consulting Group (PCG), which is scheduled to be finalized by the end of this month, which will hopefully be released to the public soon. This will be a good tool to push for change. There will be opportunities to advocate for change in the new year, working with Governor-Elect Mills and the new Administration. We also talked about the new regulations both through the Division of Licensing and the Office of MaineCare Services, including the regulations pertaining to children’s Psychiatric Residential Treatment Facilities (PRTFs) and the new licensing rules for residential facilities. I’d love to open the floor up for more discussion.
Lydia Dawson, Maine Association for Community Service Providers (MACSP): We talk a lot about the children’s behavioral health system. The PCG recommendations appear very broad. What has PCG reviewed for its report?
Ariel: My sense is that they looked at any services kids receive that are MaineCare-funded. It seems like is it’s driven by the funding stream.
Lydia: Did they include anything on PRTFs? And, if PRTFs are included in the report, did PCG include any recommendations regarding whether they’re appropriate or not?
Ariel: They can’t review PRFTs themselves because they don’t exist currently in Maine. PCG took into consideration that PRFTs could exist in Maine and spoke about how they could fit into a continuum of services offered. My assumption is that they did include recommendations regarding PRTFs. We didn’t get to direct the content of this report. The regulations created an opening for this option, whether it comes to fruition is yet to be seen.
Lydia: How closely do the recommendations align with what they discussed in the town halls?
Ariel: The town halls simply listed broad recommendations. They diminished some things and increased others. The report is much more detailed than what they introduced at the town hall meetings.
Lydia: The one I have questions about is the consolidation of case management, and making a conflict-free, regional system. Concerns were raised regarding this at the town halls.
Ariel: A lot of concerns were raised at the town halls. What we hear from kids and families is that the system doesn’t work as they would like it to. I always give the caveat that people don’t come to DRM when they’re happy with the services they’re receiving. Some of the recommendations about case management have to do with how an assessment is done, what services the child needs, if the child is receiving the services through the same agency as their case manager as this can create conflicts, what hours are needed, what hours are filled, etc. The town halls were mostly populated by providers because, I assume at least, they can get paid to go to these types of events, whereas parents are at their jobs or taking care of kids. Though, there was a virtual town hall as well. I wish that it had been more feasible for youth and families to participate; they were a relatively small percentage of attendees. The concerns raised in the town halls are factored into how PCG fleshed out their recommendations.
-It was asked if Ariel could clarify the consolidation of case management, and whether this included children’s and adult services.
Ariel: The report doesn’t have anything to do with adult services, with the exception of transition.
-It was asked if there are cheat-sheets for services, for instance what services could hypothetically be offered under speech and language services, or community access, etc.
Ariel: To my knowledge something like this doesn’t exist. The report is mapping what’s available and where. I would say what you’re referring to is most likely the expertise of the providers. The people who provide the services are best equipped to have those conversations.
-It was asked how the Department responded to feedback regarding the PRTF regulations, including comments that people made pertaining to children being only partially served, or on a waitlist not receiving services at all.
Ariel: It feels short-sighted and frustrating that they’re looking at a very flawed system and investing in the deep end (with PRTFs) rather than assisting children and families in the home. The Department is required to release their responses publicly. Has anyone reviewed those? (Click here to read the comments, and the Department’s responses to the comments). DRM commented, along with many others, and the response from the Department was essentially that DHHS makes no assertion that this will fix the whole system, but it’s one part of an appropriate continuum of services. It was a very unsatisfying non-answer, in my opinion.
Lydia: I have one more quick question – how related are PCG’s recommendations to the waitlists for children’s services? For a lot of us, if you asked, “what’s your primary concern?” it would be the waitlists. There are a sea of children getting nothing looking at kids receiving partial services wishing they could have something, anything at all.
Ariel: Definitely. All of these things are very inter-related; hopefully fixing waitlist issues will positively affect the other services as well. And, it wouldn’t make sense to address this in a vacuum. I don’t think there is a way to meaningfully distinguish minimally served versus not served at all. There are geographic issues and workforce development issues at play too. I’m not sure I remember in detail what the draft reports says, and they’re still considering feedback, but the waitlist is a key aspect. The hope is that the report will drive significant change. This is just one tool. We’re doing our best to make it as effective, specific, and concrete as possible. But, we’ll have to keep going to the new Administration to push for change. This is definitely something into which the new Administration can and should look.
-It was asked if Ariel has any sense of how many children are on the waitlists, as well as children being partially served.
Ariel: That’s a good question, that unfortunately I can’t recall the answer to off-hand. I can see if I can get you information on that. I do know that there are hundreds and hundreds of kids are waiting. I think the PCG report will likely not include detailed data such as this. Though, they used a lot of data to formulate their report.
-It was stated that it would be nice to see what’s happening to the skill levels of people not being served.
Ariel: Yes. We can surmise that it’s not good. We know that people are being pushed into high levels of care in the interim and it’s not good.
Lydia: How many kids are on multiple waitlists? One kid might be on all four of the children’s services waitlists. Last I saw each of those four separate lists were around 450, though we know there is duplication amongst the lists.
-It was stated that it’s interesting that the most knowledgeable people in the state on these issues are around this table and still we’re confused about how the system works. It was speculated whether PCG looked at case management and Direct Service Professional (DSP) turnover. It was stated that families are overwhelmed or threatened, neither of which inspires use of the system. A former educator stated that families he worked with would come back to him and say they had three or four case managers, none of whom helped them, and they didn’t have time to break in another case manager.
Ariel: I think you’re exactly right. We hear this all the time – some case managers are great, some not so much. This is true of any service you could receive. The report is aimed at these two broad areas – access to care and quality of care. Case management is a very important gateway to everything else.
-It was asked if the funding increase for case management was the result of the deaths of those two young girls.
Lydia: No, this is a different animal. It’s confusing because we talk about case management in an informal sense. People use the term case manager to refer to multiple things.
-It was stated that at a Special Education Administrators conference a few years back, there was a session where they discussed kids in the judicial system, kids in schools, kids receiving services from DHHS, agencies that provide case management – it was discovered that at an given time a child could have six to eight case managers.
Lydia: We have case management manuals that provide a summary of what services are available in each section of MaineCare which makes it easier to understand.
-A former educator stated that there appeared to be a lot of duels between DHHS and the school system regarding kids with challenging behaviors. A lot of time and energy was spent figuring out who would pay for what service.
-It was asked what the group should anticipate with the new incoming Administration. It was also asked what the hope is regarding the result of the report in terms of action.
Ariel: In terms of what you can say to new legislators, some key points: A lot of effort has gone into the children’s behavioral health system of care, it’s broken, the PCG report should be looked at, and the recommendations are good. A new Administration could bring back the Children’s Cabinet, bringing stakeholders together to advise DHHS and the Legislature and move things forward. There will be opportunities for folks like you to become involved in more official ways. Push the new Administration to really look at this. I’m hoping we’ll know more once the report comes out. There will be concrete strategizing about how to move the recommendations forward. This will be an on-going conversation.
Cullen: Ariel, thank you very much for continuing this discussion with us. It was great to have you here!
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 [No one from DHHS was present at the meeting]
Cullen: As I reported last month, Amy MacMillan, Acting Director of OADS, reached out to me and will be presenting an update on dental services at next month’s 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.
Special Education Update:
Beth MyLroie: I’ve been in the Cape Elizabeth School system for quite some time, and I always encourage conversations between outside case management and staff case management, and that they meet regularly so they can provide wraparound support. The more people around the table, the better the conversation. It’s about supporting the student who has the need, as well as supporting the parents.
-It was asked if the State has provided support regarding transition efforts.
Beth: The State provided training on transition planning. This year the State’s focus is looking to get the terminology in place; sometimes it’s a matter of semantics. I’m always advocating for student-led meetings. There are some case managers who are in the process of learning their roles. It’s still important for families to be the most knowledgeable about the process.
-It was asked if there is training for students, so they can learn how to lead these meetings. It was stated that rehearsal and understanding what the meeting is all about is very important. It was stated that a meeting run by the student increases the quality of the meeting.
Beth: I do this training for people on my caseload.
Lydia: The concept of self-advocacy in general is so important – you learn as a child that your voice matters. There are studies that link these skill sets to decreased instances of sexual assault, increased autonomy. Teaching these skills early for children has a profound affect.
Beth: The IEP has a transition section that doesn’t play out until kids are in high school. But transition is any change in someone’s life. Transition should happen when the child arrives in the school district. How children will demonstrate participation varies over time. For the child to build that confidence and learn they have a voice, and for the parents to hear their children advocating for themselves is important. It’s a process. It’s also about teaching kids and parents that change is good, asking what has worked well, what are their hopes, etc., and building on that year after year. One thing that the State says is that transition starts in 9th grade. However, transition plans simply build and progress, so you see a progression of the entire high school experience. This paints a really cool narrative that becomes part of this awesome conversation when you sit with adult case management.
Margaret: There is going to be a significant change on 7/1/19 for transition. In the transition planning process, there’s a section that discusses guardianship. Currently the school systems recommend the student be put under full guardianship when they turn 18. That will be changing under the new Probate Code with the inclusion of supported decision-making. I highly recommend the school systems contact DRM, which is leading supported decision-making trainings across the state. One important aspect in the transition plan is how the student is learning to connect with others to expand his or her relationships. Supported decision-making depends on having relationships.
Olivia Blom – DRM: DRM is offering upcoming trainings that will provide information about supported decision-making and how it and other less restrictive alternatives are incorporated into the new Probate Code, which goes into effect in July 2019. Additionally, these workshops provide practical information related to the use of self-determination goals (self-advocacy, goal setting, decision-making, and self-awareness) as part of the planning process for youth. (Click here for the dates and locations of the trainings). Also, we’re close to finalizing an actual handbook that we can give to families and other stakeholders. It spells out examples of steps you can take for more support in certain areas. DRM is also having lots of conversations with people who work in the court system on supported decision-making and self-determination.
Margaret: Supported decision-making is the least restrictive on someone’s rights. I would encourage more relationship building and making friends in the school setting, as supported decision-making depends upon this.
Cullen: Speaking of transition, one of the things you said, that was striking was that transitions happen whenever there is change. The Coalition created the Blueprint for Effective Transition, which was built on this premise, and maps out how the system can best support people in making each and every transition. The new Administration may want to draw from this more and may want to examine all of the things we’ve worked on as a Coalition, including the Blueprint for Effective Transition. The new Administration may find some treasures that may help the system work better. We’ll bring this conversation to the new administration in early 2019. Some aspects of the Developmental Services Lifelong Continuum of Care were adopted by the current Administration, but the Blueprint has not been implemented by OCFS or OADS. The incoming Administration may offer an opportunity to implement systems change.
Beth: Years ago, I remember having a meeting where there were representatives from the Department of Education (DOE) and the Department of Labor (DOL), talking about the need to communicate more closely and it was inspirational. But then life happened. We need to support whoever the new leaders are to begin having those conversations again.
Erin Rowan: In a recent webinar there was discussion regarding the Every Student Succeeds Act. We’ll see if the new Administration will make changes to the State accountability measures. The Office of Inspector General for Education will be reviewing state plans for compliance – a lot of plans are not in compliance. They will be reviewing waivers for compliance as well. Maine is giving alternative assessments to more children than is allowable. This is an example of other things we can discuss in the future and how to advocate with the new Administration.
Cullen: This Coalition has worked to have everyone at the table and to eliminate siloes; this was a key focus of the Blueprint for Effective Transition. It would be wonderful to have fresh eyes on this. Thank you, Beth, for your insight. I’m glad that you continue to be here and help us breakdown those siloes!
Federal Update:
Cullen: In part due to the passing of President George H. W. Bush, Congress quickly passed, and the President signed, another short-term Continuing Resolution (CR) prior to the 12/7 deadline, keeping the government open. The CR runs through 12/21. HUD still awaits FY 19 funding, as it was not among departments funded through minibus spending bills months ago. As such, HUD is operating at FY 18 funding levels until FY 19 funding is agreed upon. There is close agreement between the House and the Senate for the FY 19 HUD budget. It will depend on Congress’ appetite to pass full FY 19 funding prior to the new incoming Congress in January, which will have a democratic majority in the House. Additionally, we have not had reports on the HUD 811 program for quite some time. I’m hoping with the new Administration we will be able to receive updates again with regularity.
State Legislature Update:
Lydia Dawson – Maine Association for Community Service Providers (MACSP): Often when the Department must amend rules due to legislatively mandated changes, such as the recent rate increases, it appears as if they think “as long as we’re opening these rules up to make these mandated changes we could make these changes too.” The Non-Emergency Transportation (NET) changes were not mandated by the Legislature. Some of the proposed changes were not from the federal government whatsoever, and others came from the State exhibiting an abundance of caution.
Cullen: Alan Cobo-Lewis wanted to thank folks who commented on the proposed DOE Chapter 101 regulations, which were just withdrawn; it appears as if we were effective in raising our collective voices.
Lydia: I’m hoping for the same outcome for the NET proposed rule changes. There was great turnout at the recent public hearing.
-It was stated that the timing of these proposed rule changes is confusing due to the upcoming Administration change. It was stated that there must be a better way of updating rules.
-A parent, who shared his story at last month’s meeting regarding his daughter and issues with their transportation broker, stated that the State’s rationale was that his daughter had alternative transportation – him. At the second administrative hearing the officer noted that this was a burden for him and finally concluded that his daughter does not have alternative transportation. It was stated that there are many people in situations similar to his daughter.
Lydia: I’m partially convinced that your case may have been what spurred these regulations, with the State going “how did he win that case? Let’s change the regulations.”
-It was asked what the status is of the NET proposed rule changes. It was stated that there is concern that it appears the regulations have decisions coming from the broker and not the Department.
Lydia: The Department’s proposed rule changes pretty much would make it so they won’t pay for transportation for anyone who can’t be bussed. They wouldn’t be able to pay for escorts. Brokers would be able to deny transportation on the basis that someone needs an escort. The individual, the parents, the guardian, or the residential provider would be responsible for paying for the needed escort. The written comment period has concluded. We may see the Department issue an amended final rule that takes into account the feedback received, or they could withdraw the rule. We’ll have to wait and see.
Peter Stuckey: When are the broker contracts up?
Lydia: They are already. The Department put out a Request for Proposals (RFP) for the contracts. What they included in the RFP were things you couldn’t do unless you’ve been providing the service, which was concerning.
-It was asked if there is a way to provide comments on this, because the broker system has not worked since day one.
Lydia: The comment period is closed but they’re supposed to have advisory committee meetings for members of the public to advise the regional brokers about what the service should look like. They don’t publicly distribute information about where and when these occur, so I would highly suggest you inquire about them.
Peter: When the State first proposed the broker system, Commissioner Mayhew stated that it would cost several million dollars more to retain the system that had been in place, because Medicaid didn’t want their funds comingled in the way it had been in Maine’s regional transportation system – a system that had been established for more than four decades. What they didn’t say was if they had shifted reimbursement from the Federal government paying two-thirds, and the State paying one-third, and went to Administrative Reimbursement, which would have been 50/50, the system in place would not have been in violation of the regulations. In order to save a small amount of money, the change got made that put these profiteers in charge of the system and look transportation out of the hands of regional transportation providers that had built a network that allowed DOE money to be mixed with Medicaid and DOT (Department of Transportation) funds. The original system worked, and for a little money we walked away from it. It happened in a heartbeat behind the scenes. I’m wondering if it’s possible for us to approach the new Administration, say that the system we’ve had for years isn’t working, it’s not an improvement over what had been in place, and ask if we can go back to the old system. This would be an interesting question to pose to the new Commissioner of Health and Human Services, whoever that might be. Chances are whoever the new HHS Commissioner is, he or she will know exactly what you’re talking about and be apprised of the immense problems with the broker system.
Lydia: As I have done for the last few meetings, I’ve included rule change information and plain language updates in a one-page handout. (Click here for Lydia’s information on rule changes).
Here is information on upcoming public hearings and written comment periods for the proposed rule changes referenced:
Cullen: Also, before we conclude I want to remind everyone that this is an ideal time to connect with newly elected officials to educate them about important issues related to people with ID/DD. Legislators will very soon by busied with committee meetings and the biennial budget process, so connecting with them now is advantageous.
The next meeting will be on January 14, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker: Amy MacMillan, Acting Director, Office of Aging and Disability Services (OADS), DHHS. Topic: Update on dental services.
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 two business days’ 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. The new transcription program was discussed.
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: Kim Humphrey, Community Connect Maine. CommunityConnectME.Org Topic: The Postcard Project.
Kim Humphrey: The Postcard Project is an initiative through Community Connect ME, sponsored by the Maine Developmental Disabilities Council (MDDC). We have created a website dedicated to it: CommunityConnectME.Org
Begin Presentation (Click here to view the presentation):
Kim: The idea of this project is that it will help build relationships. This also provides an opportunity to connect with other people, so you can find what you need more quickly. You can get involved with Community Connect through Facebook and/or our email distribution list. The issues about which we care are often not the top priority for policy making; we’d like to change that. Sending postcards to legislators is one way of raising awareness and education about people with intellectual/developmental disabilities, and the issues that affect them. You can spend all of your time in this field and still not know everything. People are resources. It is a very steep learning curve to understand this system. With everyone reaching out we can reduce this learning curve for our elected officials. These postcards allow people to tailor their messages to their communities and their individual needs. There is also an email template. I welcome your feedback. This has potential to grow so we want to know what works, what doesn’t, and areas that could be improved.
-It was stated that it’s phenomenal that Community Connect put something like this together. This appears to be a great resource for people to connect with and educate legislators – whether it’s for a disability-related issue or another issue. It was stated that this is something that could really grow, even beyond the target population.
-A member of the group stated that she sent postcards to her legislators, opening the door to what will hopefully be a communicative relationship.
-A parent stated that this project has evolved from its first incarnation. People keep thinking of ways that would make it more effective for their purposes. It was stated that this is a great concept and provides a very easy way in which relationships can be fostered and leveraged.
Cullen: Thank you very much, Kim. The more we can reach out to legislators and educate them about people with ID/DD and the issues about which we care the better. Thank you, very well done!
End of presentation.
(Round of applause)
Featured Speaker: Ariel Linet, Staff Attorney, Disability Rights Maine. drme.org Topic: A continuation of the discussion regarding children’s services, including regulations and children’s Psychiatric Residential Treatment Facilities (PRTFs).
Ariel Linet: At the last meeting we had a healthy discussion about Children’s Services. We discussed the assessment that the Office of Child and Family Services (OCFS) has commissioned by Public Consulting Group (PCG), which is scheduled to be finalized by the end of this month, which will hopefully be released to the public soon. This will be a good tool to push for change. There will be opportunities to advocate for change in the new year, working with Governor-Elect Mills and the new Administration. We also talked about the new regulations both through the Division of Licensing and the Office of MaineCare Services, including the regulations pertaining to children’s Psychiatric Residential Treatment Facilities (PRTFs) and the new licensing rules for residential facilities. I’d love to open the floor up for more discussion.
Lydia Dawson, Maine Association for Community Service Providers (MACSP): We talk a lot about the children’s behavioral health system. The PCG recommendations appear very broad. What has PCG reviewed for its report?
Ariel: My sense is that they looked at any services kids receive that are MaineCare-funded. It seems like is it’s driven by the funding stream.
Lydia: Did they include anything on PRTFs? And, if PRTFs are included in the report, did PCG include any recommendations regarding whether they’re appropriate or not?
Ariel: They can’t review PRFTs themselves because they don’t exist currently in Maine. PCG took into consideration that PRFTs could exist in Maine and spoke about how they could fit into a continuum of services offered. My assumption is that they did include recommendations regarding PRTFs. We didn’t get to direct the content of this report. The regulations created an opening for this option, whether it comes to fruition is yet to be seen.
Lydia: How closely do the recommendations align with what they discussed in the town halls?
Ariel: The town halls simply listed broad recommendations. They diminished some things and increased others. The report is much more detailed than what they introduced at the town hall meetings.
Lydia: The one I have questions about is the consolidation of case management, and making a conflict-free, regional system. Concerns were raised regarding this at the town halls.
Ariel: A lot of concerns were raised at the town halls. What we hear from kids and families is that the system doesn’t work as they would like it to. I always give the caveat that people don’t come to DRM when they’re happy with the services they’re receiving. Some of the recommendations about case management have to do with how an assessment is done, what services the child needs, if the child is receiving the services through the same agency as their case manager as this can create conflicts, what hours are needed, what hours are filled, etc. The town halls were mostly populated by providers because, I assume at least, they can get paid to go to these types of events, whereas parents are at their jobs or taking care of kids. Though, there was a virtual town hall as well. I wish that it had been more feasible for youth and families to participate; they were a relatively small percentage of attendees. The concerns raised in the town halls are factored into how PCG fleshed out their recommendations.
-It was asked if Ariel could clarify the consolidation of case management, and whether this included children’s and adult services.
Ariel: The report doesn’t have anything to do with adult services, with the exception of transition.
-It was asked if there are cheat-sheets for services, for instance what services could hypothetically be offered under speech and language services, or community access, etc.
Ariel: To my knowledge something like this doesn’t exist. The report is mapping what’s available and where. I would say what you’re referring to is most likely the expertise of the providers. The people who provide the services are best equipped to have those conversations.
-It was asked how the Department responded to feedback regarding the PRTF regulations, including comments that people made pertaining to children being only partially served, or on a waitlist not receiving services at all.
Ariel: It feels short-sighted and frustrating that they’re looking at a very flawed system and investing in the deep end (with PRTFs) rather than assisting children and families in the home. The Department is required to release their responses publicly. Has anyone reviewed those? (Click here to read the comments, and the Department’s responses to the comments). DRM commented, along with many others, and the response from the Department was essentially that DHHS makes no assertion that this will fix the whole system, but it’s one part of an appropriate continuum of services. It was a very unsatisfying non-answer, in my opinion.
Lydia: I have one more quick question – how related are PCG’s recommendations to the waitlists for children’s services? For a lot of us, if you asked, “what’s your primary concern?” it would be the waitlists. There are a sea of children getting nothing looking at kids receiving partial services wishing they could have something, anything at all.
Ariel: Definitely. All of these things are very inter-related; hopefully fixing waitlist issues will positively affect the other services as well. And, it wouldn’t make sense to address this in a vacuum. I don’t think there is a way to meaningfully distinguish minimally served versus not served at all. There are geographic issues and workforce development issues at play too. I’m not sure I remember in detail what the draft reports says, and they’re still considering feedback, but the waitlist is a key aspect. The hope is that the report will drive significant change. This is just one tool. We’re doing our best to make it as effective, specific, and concrete as possible. But, we’ll have to keep going to the new Administration to push for change. This is definitely something into which the new Administration can and should look.
-It was asked if Ariel has any sense of how many children are on the waitlists, as well as children being partially served.
Ariel: That’s a good question, that unfortunately I can’t recall the answer to off-hand. I can see if I can get you information on that. I do know that there are hundreds and hundreds of kids are waiting. I think the PCG report will likely not include detailed data such as this. Though, they used a lot of data to formulate their report.
-It was stated that it would be nice to see what’s happening to the skill levels of people not being served.
Ariel: Yes. We can surmise that it’s not good. We know that people are being pushed into high levels of care in the interim and it’s not good.
Lydia: How many kids are on multiple waitlists? One kid might be on all four of the children’s services waitlists. Last I saw each of those four separate lists were around 450, though we know there is duplication amongst the lists.
-It was stated that it’s interesting that the most knowledgeable people in the state on these issues are around this table and still we’re confused about how the system works. It was speculated whether PCG looked at case management and Direct Service Professional (DSP) turnover. It was stated that families are overwhelmed or threatened, neither of which inspires use of the system. A former educator stated that families he worked with would come back to him and say they had three or four case managers, none of whom helped them, and they didn’t have time to break in another case manager.
Ariel: I think you’re exactly right. We hear this all the time – some case managers are great, some not so much. This is true of any service you could receive. The report is aimed at these two broad areas – access to care and quality of care. Case management is a very important gateway to everything else.
-It was asked if the funding increase for case management was the result of the deaths of those two young girls.
Lydia: No, this is a different animal. It’s confusing because we talk about case management in an informal sense. People use the term case manager to refer to multiple things.
-It was stated that at a Special Education Administrators conference a few years back, there was a session where they discussed kids in the judicial system, kids in schools, kids receiving services from DHHS, agencies that provide case management – it was discovered that at an given time a child could have six to eight case managers.
Lydia: We have case management manuals that provide a summary of what services are available in each section of MaineCare which makes it easier to understand.
-A former educator stated that there appeared to be a lot of duels between DHHS and the school system regarding kids with challenging behaviors. A lot of time and energy was spent figuring out who would pay for what service.
-It was asked what the group should anticipate with the new incoming Administration. It was also asked what the hope is regarding the result of the report in terms of action.
Ariel: In terms of what you can say to new legislators, some key points: A lot of effort has gone into the children’s behavioral health system of care, it’s broken, the PCG report should be looked at, and the recommendations are good. A new Administration could bring back the Children’s Cabinet, bringing stakeholders together to advise DHHS and the Legislature and move things forward. There will be opportunities for folks like you to become involved in more official ways. Push the new Administration to really look at this. I’m hoping we’ll know more once the report comes out. There will be concrete strategizing about how to move the recommendations forward. This will be an on-going conversation.
Cullen: Ariel, thank you very much for continuing this discussion with us. It was great to have you here!
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 [No one from DHHS was present at the meeting]
Cullen: As I reported last month, Amy MacMillan, Acting Director of OADS, reached out to me and will be presenting an update on dental services at next month’s 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.
Special Education Update:
Beth MyLroie: I’ve been in the Cape Elizabeth School system for quite some time, and I always encourage conversations between outside case management and staff case management, and that they meet regularly so they can provide wraparound support. The more people around the table, the better the conversation. It’s about supporting the student who has the need, as well as supporting the parents.
-It was asked if the State has provided support regarding transition efforts.
Beth: The State provided training on transition planning. This year the State’s focus is looking to get the terminology in place; sometimes it’s a matter of semantics. I’m always advocating for student-led meetings. There are some case managers who are in the process of learning their roles. It’s still important for families to be the most knowledgeable about the process.
-It was asked if there is training for students, so they can learn how to lead these meetings. It was stated that rehearsal and understanding what the meeting is all about is very important. It was stated that a meeting run by the student increases the quality of the meeting.
Beth: I do this training for people on my caseload.
Lydia: The concept of self-advocacy in general is so important – you learn as a child that your voice matters. There are studies that link these skill sets to decreased instances of sexual assault, increased autonomy. Teaching these skills early for children has a profound affect.
Beth: The IEP has a transition section that doesn’t play out until kids are in high school. But transition is any change in someone’s life. Transition should happen when the child arrives in the school district. How children will demonstrate participation varies over time. For the child to build that confidence and learn they have a voice, and for the parents to hear their children advocating for themselves is important. It’s a process. It’s also about teaching kids and parents that change is good, asking what has worked well, what are their hopes, etc., and building on that year after year. One thing that the State says is that transition starts in 9th grade. However, transition plans simply build and progress, so you see a progression of the entire high school experience. This paints a really cool narrative that becomes part of this awesome conversation when you sit with adult case management.
Margaret: There is going to be a significant change on 7/1/19 for transition. In the transition planning process, there’s a section that discusses guardianship. Currently the school systems recommend the student be put under full guardianship when they turn 18. That will be changing under the new Probate Code with the inclusion of supported decision-making. I highly recommend the school systems contact DRM, which is leading supported decision-making trainings across the state. One important aspect in the transition plan is how the student is learning to connect with others to expand his or her relationships. Supported decision-making depends on having relationships.
Olivia Blom – DRM: DRM is offering upcoming trainings that will provide information about supported decision-making and how it and other less restrictive alternatives are incorporated into the new Probate Code, which goes into effect in July 2019. Additionally, these workshops provide practical information related to the use of self-determination goals (self-advocacy, goal setting, decision-making, and self-awareness) as part of the planning process for youth. (Click here for the dates and locations of the trainings). Also, we’re close to finalizing an actual handbook that we can give to families and other stakeholders. It spells out examples of steps you can take for more support in certain areas. DRM is also having lots of conversations with people who work in the court system on supported decision-making and self-determination.
Margaret: Supported decision-making is the least restrictive on someone’s rights. I would encourage more relationship building and making friends in the school setting, as supported decision-making depends upon this.
Cullen: Speaking of transition, one of the things you said, that was striking was that transitions happen whenever there is change. The Coalition created the Blueprint for Effective Transition, which was built on this premise, and maps out how the system can best support people in making each and every transition. The new Administration may want to draw from this more and may want to examine all of the things we’ve worked on as a Coalition, including the Blueprint for Effective Transition. The new Administration may find some treasures that may help the system work better. We’ll bring this conversation to the new administration in early 2019. Some aspects of the Developmental Services Lifelong Continuum of Care were adopted by the current Administration, but the Blueprint has not been implemented by OCFS or OADS. The incoming Administration may offer an opportunity to implement systems change.
Beth: Years ago, I remember having a meeting where there were representatives from the Department of Education (DOE) and the Department of Labor (DOL), talking about the need to communicate more closely and it was inspirational. But then life happened. We need to support whoever the new leaders are to begin having those conversations again.
Erin Rowan: In a recent webinar there was discussion regarding the Every Student Succeeds Act. We’ll see if the new Administration will make changes to the State accountability measures. The Office of Inspector General for Education will be reviewing state plans for compliance – a lot of plans are not in compliance. They will be reviewing waivers for compliance as well. Maine is giving alternative assessments to more children than is allowable. This is an example of other things we can discuss in the future and how to advocate with the new Administration.
Cullen: This Coalition has worked to have everyone at the table and to eliminate siloes; this was a key focus of the Blueprint for Effective Transition. It would be wonderful to have fresh eyes on this. Thank you, Beth, for your insight. I’m glad that you continue to be here and help us breakdown those siloes!
Federal Update:
Cullen: In part due to the passing of President George H. W. Bush, Congress quickly passed, and the President signed, another short-term Continuing Resolution (CR) prior to the 12/7 deadline, keeping the government open. The CR runs through 12/21. HUD still awaits FY 19 funding, as it was not among departments funded through minibus spending bills months ago. As such, HUD is operating at FY 18 funding levels until FY 19 funding is agreed upon. There is close agreement between the House and the Senate for the FY 19 HUD budget. It will depend on Congress’ appetite to pass full FY 19 funding prior to the new incoming Congress in January, which will have a democratic majority in the House. Additionally, we have not had reports on the HUD 811 program for quite some time. I’m hoping with the new Administration we will be able to receive updates again with regularity.
State Legislature Update:
Lydia Dawson – Maine Association for Community Service Providers (MACSP): Often when the Department must amend rules due to legislatively mandated changes, such as the recent rate increases, it appears as if they think “as long as we’re opening these rules up to make these mandated changes we could make these changes too.” The Non-Emergency Transportation (NET) changes were not mandated by the Legislature. Some of the proposed changes were not from the federal government whatsoever, and others came from the State exhibiting an abundance of caution.
Cullen: Alan Cobo-Lewis wanted to thank folks who commented on the proposed DOE Chapter 101 regulations, which were just withdrawn; it appears as if we were effective in raising our collective voices.
Lydia: I’m hoping for the same outcome for the NET proposed rule changes. There was great turnout at the recent public hearing.
-It was stated that the timing of these proposed rule changes is confusing due to the upcoming Administration change. It was stated that there must be a better way of updating rules.
-A parent, who shared his story at last month’s meeting regarding his daughter and issues with their transportation broker, stated that the State’s rationale was that his daughter had alternative transportation – him. At the second administrative hearing the officer noted that this was a burden for him and finally concluded that his daughter does not have alternative transportation. It was stated that there are many people in situations similar to his daughter.
Lydia: I’m partially convinced that your case may have been what spurred these regulations, with the State going “how did he win that case? Let’s change the regulations.”
-It was asked what the status is of the NET proposed rule changes. It was stated that there is concern that it appears the regulations have decisions coming from the broker and not the Department.
Lydia: The Department’s proposed rule changes pretty much would make it so they won’t pay for transportation for anyone who can’t be bussed. They wouldn’t be able to pay for escorts. Brokers would be able to deny transportation on the basis that someone needs an escort. The individual, the parents, the guardian, or the residential provider would be responsible for paying for the needed escort. The written comment period has concluded. We may see the Department issue an amended final rule that takes into account the feedback received, or they could withdraw the rule. We’ll have to wait and see.
Peter Stuckey: When are the broker contracts up?
Lydia: They are already. The Department put out a Request for Proposals (RFP) for the contracts. What they included in the RFP were things you couldn’t do unless you’ve been providing the service, which was concerning.
-It was asked if there is a way to provide comments on this, because the broker system has not worked since day one.
Lydia: The comment period is closed but they’re supposed to have advisory committee meetings for members of the public to advise the regional brokers about what the service should look like. They don’t publicly distribute information about where and when these occur, so I would highly suggest you inquire about them.
Peter: When the State first proposed the broker system, Commissioner Mayhew stated that it would cost several million dollars more to retain the system that had been in place, because Medicaid didn’t want their funds comingled in the way it had been in Maine’s regional transportation system – a system that had been established for more than four decades. What they didn’t say was if they had shifted reimbursement from the Federal government paying two-thirds, and the State paying one-third, and went to Administrative Reimbursement, which would have been 50/50, the system in place would not have been in violation of the regulations. In order to save a small amount of money, the change got made that put these profiteers in charge of the system and look transportation out of the hands of regional transportation providers that had built a network that allowed DOE money to be mixed with Medicaid and DOT (Department of Transportation) funds. The original system worked, and for a little money we walked away from it. It happened in a heartbeat behind the scenes. I’m wondering if it’s possible for us to approach the new Administration, say that the system we’ve had for years isn’t working, it’s not an improvement over what had been in place, and ask if we can go back to the old system. This would be an interesting question to pose to the new Commissioner of Health and Human Services, whoever that might be. Chances are whoever the new HHS Commissioner is, he or she will know exactly what you’re talking about and be apprised of the immense problems with the broker system.
Lydia: As I have done for the last few meetings, I’ve included rule change information and plain language updates in a one-page handout. (Click here for Lydia’s information on rule changes).
Here is information on upcoming public hearings and written comment periods for the proposed rule changes referenced:
- Section 29, Chapter II: Written comment: Dec 14 to Rachel Posner at [email protected]
- Section 28, Chapter III: Public hearing: Dec 10 at 9am (32 Blossom Ln, Marquardt Building, D7, Augusta); Written comment: Dec 20 to Dean Bugaj at [email protected]
- Section 65, Chapter II and III: Public hearing: Dec 10 at 12pm (32 Blossom Ln, Marquardt Building, D7, Augusta); Written Comment: Dec 20 to Dean Bugaj at [email protected]
- Section 97, Chapter III: Public hearing: Dec 17 at 10am (Cross Building, Room 400, 111 Sewall St, Augusta); Written comment: Dec 27 to Heidi Bechard at [email protected]
- Section 13, Chapter III: Public hearing: Dec 18 at 9am (32 Blossom Ln, Marquardt Building, D7, Augusta); Written comment: Dec 28 to Dean Bugaj at [email protected]
Cullen: Also, before we conclude I want to remind everyone that this is an ideal time to connect with newly elected officials to educate them about important issues related to people with ID/DD. Legislators will very soon by busied with committee meetings and the biennial budget process, so connecting with them now is advantageous.
The next meeting will be on January 14, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker: Amy MacMillan, Acting Director, Office of Aging and Disability Services (OADS), DHHS. Topic: Update on dental services.
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 two business days’ advance notice prior to meetings so we can arrange accommodations.