July 8, 2019
Minutes
Minutes
Present: Frances Ryan, Terry Baldwin, David Cowing, Debbie Dionne, Kim Humphrey, Betsy Mahoney, Mark Kemmerle, Bonnie-Jean Brooks, Ann-Marie Mayberry, Julie Brennan, Tabatha Boulier, Jennifer Karod, Staci Converse, Olivia Blom, Janet Hamel, Jamie Whitehouse, Matt Hickey, Lydia Dawson, Cullen Ryan, Vickey Rand, and a few others who did not sign the attendance list. Via Zoom – (Auburn): Ann Bentley. (Winthrop): Cathy Dionne and Emily Kalafarski. (Sanford): Emily Spencer. (Orono): Maria Cameron. Misc. sites: Stacy Lamontagne and Helen Hemminger.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Featured Speakers: Mark Kemmerle, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: MDSOAB Annual Forum – feedback for DHHS.
Cullen: Each year the MDSOAB holds community forums across the state to pull people familiar with and/or receiving services together to provide input on how services could be improved, point out issues, and provide general feedback. Today we have Mark Kemmerle, Executive Director of the MDSOAB. I want to welcome you and thank you for being here. This forum is designed to start a dialogue. This year will be a little different from MDSOAB annual forums in years past. Instead of a freeform discussion, there are a handful of identified prompts/principles on which the group will focus and comment. The DD CoC is being reworked to become a more linear presentation, featuring a series of one-pagers, and the group will be focusing on these principles as well. We want to ensure that you all have Mark’s contact information ([email protected]) so that you can continue to provide feedback, even after the meeting.
Mark Kemmerle: Last year at this time, I had just taken my job a few months prior and was fairly new to the process. I started with the input from the 2017 Annual Forum to look at what had been addressed and what we needed to continue to discuss. The same list of concerns had been populated year after year. Paul Saucier, the new Director of OADS, has attended a number of these meetings as well as meetings of the MDSOAB – which is such a refreshing change from the previous administration. OADS is listening and they want to know our concerns, and they recognize that the list of concerns previously generated in these annual forums are all important issues that need attention and have already included them in their planning.
This year, I’d like to ask this group if the identified principles that were sent with the meeting materials, and slightly revised in the DD CoC meeting immediately before this, are accurate, complete, or if they need to be improved, revised, etc. More importantly, does the system of care in Maine live up to these values? And, do services line up the way we think they ought to? The system has to be adequately financed to address these needs. Where does our current system exhibit these characteristics, and where is it falling short? Both the MDSOAB and OADS would be very interested to hear your perspective. (Click here for the Prompts for the 2019 MDSOAB/OADS Listening Sessions)
Forum Discussion: The following bulleted list is the direct feedback generated from attendees, with any responses to questions/comments indented and identified by the speaker, as relevant.
Mark: We’re going to try to do two more of these listening sessions – one in August in the Bangor area in the evening at OHI, and one in September in the Lewiston area.
Cullen: If you have any additional feedback please attend one of the upcoming forums or reach out to Mark directly via email: [email protected].
Mark: Also, regarding community inclusion, the Home and Community-Based Services (HCBS) Settings Rule will tell us pretty definitively what community inclusion is, if we’re meeting it, and provide guidance on how we can get there.
Cullen: Mark, thank you for being here. This generated a great discussion!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Click here for the most recent OADS update (posted on its website on 7/16).
Emily Kalafarski – Resource and Development Manager, OADS: I’m pleased to be here today to listen to the conversation. These listening sessions are part of a multi-mode strategy for collecting feedback this year, including regular attendance at these meetings, the HCBS Advisory Committee, and we’re specifically seeking input from self-advocates.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Click here for the most recent OCFS update (posted on its website on 7/2).
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group, which met earlier this morning, is back to fulfilling its original purpose acting as a thinktank for OADS. This group is rejuvenated and is working with OADS, re-examining the Developmental Services Lifelong CoC (DD CoC), with the goal of making it more user-friendly for the Legislature. We’re looking to invite Todd Landry, OCFS Director, to speak at the September meeting to start to look at the Blueprint for Effective Transition.
Disability Rights Maine (DRM) Update:
Staci Converse: There is a film screening of The Kids We Lose at Hannaford Hall tomorrow (click here for more information). There’s a Disability Pride Maine event on 7/19 in Augusta (click here for more information). We continue to have ongoing supported decision-making across the state; there is one in Bangor on 7/10, South Portland on 7/24, and Lewiston on 7/30 (others are scheduled and listed in the events section of the DRM website) The SDM Handbook is also available online on the Support My Decision website. Our DSA program continues to do a lot of outreaching and monitoring in people’s home.
Federal & Housing Updates:
Cullen: Congress is working on the FY 20 allocations and budget, which begins 10/1/19. If Congress does not lift the Budget Control Act federal spending caps, sequestration would occur, as the previous agreement to lift the caps only included FY 18 and 19. Our Delegation is on board with raising the caps and avoiding sequestration, especially thanks to Senators Collins and King for their steadfast support. A lot is currently hanging in the balance. I will be in DC in two weeks, along with eleven other advocates from Maine, meeting face-to-face with all four members of our Delegation advocating for resources, including housing and services.
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): There were a few big things that came out of this Legislative session, which ended at the end of June.
Also, I wanted to announce that I’m moving out of state to Idaho at the end of next month; as such MACSP will be looking for a new Executive Director. I hope to stay on with MACSP remotely for as long as possible until a new Executive Director is hired, who will hopefully be a value add to this table and many others. I hope people continue to reach out to me and I hope to stay in contact!
Cullen: I want to thank a moment to say thank you, Lydia. You have been a tireless advocate in all of your roles, you are incredibly articulate, and you have eloquently educated not only this group but also the Legislature. I can’t imagine what Maine will be like without you and your fierce advocacy. I want to thank you for all the hours and energy you’ve put in, helping to improve Maine’s system of care. Thank you! (Large round of applause.)
Other Business:
The next meeting will be on August 12, 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: Helen Hemminger, Research and KIDS COUNT Associate, Maine Children’s Alliance. Topic: Maine KIDS COUNT and the 2020 Census.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Featured Speakers: Mark Kemmerle, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: MDSOAB Annual Forum – feedback for DHHS.
Cullen: Each year the MDSOAB holds community forums across the state to pull people familiar with and/or receiving services together to provide input on how services could be improved, point out issues, and provide general feedback. Today we have Mark Kemmerle, Executive Director of the MDSOAB. I want to welcome you and thank you for being here. This forum is designed to start a dialogue. This year will be a little different from MDSOAB annual forums in years past. Instead of a freeform discussion, there are a handful of identified prompts/principles on which the group will focus and comment. The DD CoC is being reworked to become a more linear presentation, featuring a series of one-pagers, and the group will be focusing on these principles as well. We want to ensure that you all have Mark’s contact information ([email protected]) so that you can continue to provide feedback, even after the meeting.
Mark Kemmerle: Last year at this time, I had just taken my job a few months prior and was fairly new to the process. I started with the input from the 2017 Annual Forum to look at what had been addressed and what we needed to continue to discuss. The same list of concerns had been populated year after year. Paul Saucier, the new Director of OADS, has attended a number of these meetings as well as meetings of the MDSOAB – which is such a refreshing change from the previous administration. OADS is listening and they want to know our concerns, and they recognize that the list of concerns previously generated in these annual forums are all important issues that need attention and have already included them in their planning.
This year, I’d like to ask this group if the identified principles that were sent with the meeting materials, and slightly revised in the DD CoC meeting immediately before this, are accurate, complete, or if they need to be improved, revised, etc. More importantly, does the system of care in Maine live up to these values? And, do services line up the way we think they ought to? The system has to be adequately financed to address these needs. Where does our current system exhibit these characteristics, and where is it falling short? Both the MDSOAB and OADS would be very interested to hear your perspective. (Click here for the Prompts for the 2019 MDSOAB/OADS Listening Sessions)
Forum Discussion: The following bulleted list is the direct feedback generated from attendees, with any responses to questions/comments indented and identified by the speaker, as relevant.
- More accountability across divisions within the Department, which is siloed. When there’s an issue people tend to get sent to numerous different places within the Department with no one person or office taking accountability. Part of this is communication, but it’s also about accountability.
- There should be more service providers across the state, so choice isn’t limited across Maine’s large geography.
- We can address the problems in a way that creates a better system for everyone. Working in Special Education, I saw that a lot of the effort was about improving the classroom environment for everyone. Communicating both that this is such a significant need, whatever that need might be for instance transportation, as well as possible ways of addressing it while thinking about having a more robust system for everyone.
- There isn’t enough of a knowledge base in general. We’re not teaching children and other people what it means for someone to have disabilities. To increase natural supports we need to educate people and reduce the fear and stigma around people with ID/DD.
- There’s a lack of knowledge and educational materials for parents and consumers. We talk about choice, but we don’t adequately educate people what those choices are and what it really means for people and their families to have their needs met.
- Providers need to work together. Providers all want what’s best for people, but we tend to work in a very siloed way. Perhaps working across provider agencies would help with this.
- There is a distinct lack of choice for services, specifically for people who need one-on-one support, as well as day programs. The overall lack of capacity limits choice as well, including where people can live, etc.
- It’s hard to say what would make transportation better until we know what it looks like when it’s functional. All of us coming together to work on a couple big issues that we know are the Department’s priority issues, so we can make progress, would help. Things tend to get pushed towards the bottom of the pile, so we need to really tackle that pile, and point out the very dysfunctional aspects of the system so that we can get some functionality.
- We see that the Section 21 waitlist has 1600 or so names on it, but that can be misleading. Every case manager gets everyone eligible for Section 21 services on the waitlist, and everyone is eligible for both Section 21 and 29. We have a misleading number of people who are currently in need of Section 21 agency home supports – one of the differentiators between Section 21 and Section 29. The Department finding a way to differentiate what those needs are and how many people are actually in need of Section 21 services, and being transparent about it, is important. How many people are on the Section 21 waitlist who are also not receiving Section 29 services – people who are receiving nothing right now except perhaps case management?
- Maine hasn’t been in compliance with many of the elements of Maine Statute Title 34b, which came about in preparation for the closing of the Consent Decree. One of those elements speaks to the importance of identifying unmet needs, who has them, how many, and in what categories. This is supposed to inform the budgeting process. Taking a fresh look at 34b would be advantageous.
- Communication from the Department has deteriorated in general over the years. There was a time when we knew more about what services were out there when we had a DHHS website that was user friendly and could be easily navigated. Also, the Department used to send emails with more regularity.
- One requirement which came from the Consent Decree was the Department maintaining a current resources directory, published every year. Providers used to be able to list the services they offered, and have it published on the DHHS website. This has fallen by the wayside.
- The current system is extremely confusing for families.
- I have child who had to move out of the state and was finally able to come back to Maine. When I think lifespan, I think that I want to be able to die in peace and that my daughter’s life won’t come to a halt when I can no longer care for her. Families make ongoing efforts to see that their children can live as independently as possible. Moving from the family home into whatever residential option is chosen is better for everyone. Helping someone become more independent from childhood throughout the lifespan – it all comes down to money, having support available for the individual and family. My daughter lived a very rich life on paper – she did all of these activities which she loved, but they ended after she left that scheduled activity. What she really needed was peers; peer relationships are essential and is larger than what a family can do.
- The Blueprint for Effective Transition really contemplated personal relationships, which is one of those more elusive things to write on paper, yet is pivotal to someone leading a fulfilling life.
- Many people don’t feel that the supports they receive are supporting the goal of independence. This is an essential goal about which everyone ought to care.
- As a provider I have seen that a lot of DSPs (direct support professionals) aren’t truly independent – they live with their parents, they don’t know how to cook meals, etc. Many DSPs aren’t included as part of their own communities. How are they supposed to be able to foster independence and community inclusion when they don’t have it themselves?
- There appears to be a real problem with lack of community awareness – for instance a DSP in Biddeford trying to navigate the Brunswick-area community.
- Social media has drastically changed the landscape for community inclusion; this is where social connections are made now. This is a barrier to community access because there’s a stigma and fear of predatory behavior when it comes to people with ID/DD using social media.
- The workforce landscape is changing in general.
- There is a workforce crisis. There are people who want to work but lack a high school diploma or GED; this requirement has been a barrier to hiring very qualified people.
- As a former DSP, I was getting paid less than a cashier at Hannaford to do this very intense work, and at the same time I wasn’t able to pay the bills. DSP pay needs to be commensurate with the work people are being asked to do.
- A resource directory for DSPs, with things that staff have found out in the community that are inclusive etc., would also be very helpful. DSPs want to do more but often don’t know what to do out in the community; often times they’re new to this too.
- Some states have gone with a standardized software system to document services. The ability to go in and look across a similar playing field at agencies and develop those quality outcomes and the ability to desk audit those does not exist in Maine. It may exist within case management, but as far as the other provision of services that’s the first step – developing quality measures and finding a way to consistently review those.
- Years ago, OADS had created its Roadmap to Services, which was very helpful.
- There needs to be flexibility within the system as people grow and evolve – as service wants/needs ebb and flow.
- There’s not enough outreach to the up-and-coming social workers while they’re in school, before they enter the workforce – both on the part of the Department and providers. Perhaps creating partnerships between the schools, providers, and the Department.
- Every year you have to ask people about their choice of provider – it feels more like a false choice because people don’t really know about other agencies and what they offer. It’s one thing to tell someone they have a choice, but if they don’t know what their options really are, it’s not true choice. Additionally, if there is only one provider in your area is that choice? No, it’s not. Building resource binders with the agencies, their missions, and the services offered for informed decision-making, so people don’t “choose” what they’re being given would greatly help. Some of this might depend upon the program and service type – people often tour day programs for instance, but this is probably a lot less common for residential programs.
- There are still issues with community case managers and how well they provide the service. This affects every aspect of service delivery for people.
- Choice unfortunately boils down to availability and capacity in within the system.
- Not being able to receive other services from the same agency at which their case manager works drastically affects a person’s choice.
- There’s a lack of clinicians who are specialized in this field, specifically communication consults.
- There’s a need for more opportunities for staff training so that people can achieve their goals.
- Generally, families have a huge investment, knowledge base, and presence in the community. The system as it currently exists has a heavy reliance on parents and guardians subsidizing the state. There are also ways the system discourages this as well. When my son went through transition planning I didn’t know what a group home was, what a waiver was, etc., but I knew my son, I knew what he needed for modes of support, and could share that with someone if someone would have listened.
- : I think this is what is meant in the partnership and lifespan principles. If natural supports were extended in a partnership with formal supports it might produce better outcomes, as you could weave that into the lifespan.
- Being nationally connected (ANCOR – American Network of Community Options and Resources), these types of conversations are happening in every state across the country. There are some leading practices in other states around certain topics. If we could develop a way to have some of these leading practice ideas it would be helpful.
- : Perhaps ANCOR would be able to disseminate some of these leading practices at a future Coalition meeting through one or more of its members.
- Age-friendly communities are disability-friendly communities – there is an immense overlap between the issues, barriers, and needs of these populations, and there are ways in which we can work together for a mutually beneficial partnership.
- Person-centered planning (PCP) meetings are not person-centered, it’s a checklist for the case managers. Even when people have goals they’re not being followed through.
- Prevention is also important and is largely overlooked.
Mark: We’re going to try to do two more of these listening sessions – one in August in the Bangor area in the evening at OHI, and one in September in the Lewiston area.
Cullen: If you have any additional feedback please attend one of the upcoming forums or reach out to Mark directly via email: [email protected].
Mark: Also, regarding community inclusion, the Home and Community-Based Services (HCBS) Settings Rule will tell us pretty definitively what community inclusion is, if we’re meeting it, and provide guidance on how we can get there.
Cullen: Mark, thank you for being here. This generated a great discussion!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Click here for the most recent OADS update (posted on its website on 7/16).
Emily Kalafarski – Resource and Development Manager, OADS: I’m pleased to be here today to listen to the conversation. These listening sessions are part of a multi-mode strategy for collecting feedback this year, including regular attendance at these meetings, the HCBS Advisory Committee, and we’re specifically seeking input from self-advocates.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Click here for the most recent OCFS update (posted on its website on 7/2).
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group, which met earlier this morning, is back to fulfilling its original purpose acting as a thinktank for OADS. This group is rejuvenated and is working with OADS, re-examining the Developmental Services Lifelong CoC (DD CoC), with the goal of making it more user-friendly for the Legislature. We’re looking to invite Todd Landry, OCFS Director, to speak at the September meeting to start to look at the Blueprint for Effective Transition.
Disability Rights Maine (DRM) Update:
Staci Converse: There is a film screening of The Kids We Lose at Hannaford Hall tomorrow (click here for more information). There’s a Disability Pride Maine event on 7/19 in Augusta (click here for more information). We continue to have ongoing supported decision-making across the state; there is one in Bangor on 7/10, South Portland on 7/24, and Lewiston on 7/30 (others are scheduled and listed in the events section of the DRM website) The SDM Handbook is also available online on the Support My Decision website. Our DSA program continues to do a lot of outreaching and monitoring in people’s home.
Federal & Housing Updates:
Cullen: Congress is working on the FY 20 allocations and budget, which begins 10/1/19. If Congress does not lift the Budget Control Act federal spending caps, sequestration would occur, as the previous agreement to lift the caps only included FY 18 and 19. Our Delegation is on board with raising the caps and avoiding sequestration, especially thanks to Senators Collins and King for their steadfast support. A lot is currently hanging in the balance. I will be in DC in two weeks, along with eleven other advocates from Maine, meeting face-to-face with all four members of our Delegation advocating for resources, including housing and services.
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): There were a few big things that came out of this Legislative session, which ended at the end of June.
- One of the major things was a central crisis intake system for the ID/D population. The Department hired eight full-time positions for this central crisis intake system specifically for people with ID/DD.
- The Department will also have to promulgate rules regarding crisis services, which will provide an opportunity for public input.
- There was a lot of discussion regarding labor mandates this legislative session. MaineCare providers across the board said if there are requirements to pay more or to allow for more paid leave, then rates need to be addressed so services aren’t downgraded. The Health and Human Services (HHS) Committee asked OMS (Office of MaineCare Services) to come back and provide presentations on this early in the next session, likely in February. The Department will have to discuss those affects – did these labor mandates affect MaineCare services, and if so how can it be addressed?
- The HHS Committee also requested a response regarding how we’re doing rate methodology as a system; the Department will come back with an answer to that as well.
- The HHS Committee also wants information on how we are supporting individuals with ID/DD with high behavioral needs – are we properly supporting them? If not, where are those gaps and how do we address them?
- There are also a lot of bills that were carried over into the next session, either because they need funding which wasn’t available, or they included amendments which necessitated further discussion. Bills that were carried over include the children’s services bill and the MDSOAB bill.
- The Probate Code bill passed which pertained to supported decision-making (SDM); SDM going into effect was pushed back until September 1st instead of July 1st.
- Section 28 has emergency and proposed rule changes, currently out for comment. These rules make BCBA services available under Section 28, which is a big deal! Since the Department proposed it as an emergency rule it is in effect now, and the Department simultaneously released it as a proposed rule so we can offer written comments (which are due 8/2 and can be submitted by clicking this link).
Also, I wanted to announce that I’m moving out of state to Idaho at the end of next month; as such MACSP will be looking for a new Executive Director. I hope to stay on with MACSP remotely for as long as possible until a new Executive Director is hired, who will hopefully be a value add to this table and many others. I hope people continue to reach out to me and I hope to stay in contact!
Cullen: I want to thank a moment to say thank you, Lydia. You have been a tireless advocate in all of your roles, you are incredibly articulate, and you have eloquently educated not only this group but also the Legislature. I can’t imagine what Maine will be like without you and your fierce advocacy. I want to thank you for all the hours and energy you’ve put in, helping to improve Maine’s system of care. Thank you! (Large round of applause.)
Other Business:
- The week of September 9th is National DSP recognition week!
- Click here for the 2019 Kids Count Data Book in advance of the August presentation! Email Helen Hemminger if you would like a hard copy of the book.
The next meeting will be on August 12, 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: Helen Hemminger, Research and KIDS COUNT Associate, Maine Children’s Alliance. Topic: Maine KIDS COUNT and the 2020 Census.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].