January 13, 2020
Minutes
Minutes
Present: Andy Taranko, Mary Chris Semrow, Mark Kemmerle, David Cowing, Debbie Dionne, Kim Humphrey, Rachel Dyer, Staci Converse, Barrett Littlefield, Julie Brennan, Sally Mileson, Foxfire Buck, Peter Stuckey, Margaret Cardoza, Tracey Webb, Ashleigh Barker, Cullen Ryan, and Vickey Rand. Via Zoom – (Orono): Bonnie Robinson. (Brunswick): Teague Morris. (Bangor-OHI): Maria Cameron, Dixie Redmond, Bonnie-Jean Brooks, Vickie Labelle, and Maggie Hoffman. (Belfast): Linda Lee. (Gardiner): Heidi Mansir. (Wilton): Kristin McPherson. Misc. sites: Craig Patterson, Betsy Hopkins, Alan Cobo-Lewis, Alli Vercoe, Shelley Zielinkski, and Helen Hemminger.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen noted with sadness that Arthur Clum passed away within the last month. Arthur was praised for the significant accomplishments he has made to improve the lives of people with intellectual and developmental disabilities in Maine. The group held a moment of silence for Arthur’s decades-long dedication and key advocacy efforts.
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: It’s great to be back here. Paul and I spent a fair amount of time with you all last month and shared a lot of information about where we’re thinking of going. We appreciated the conversation and the feedback we received at that meeting. Right now, we’re very busy now that the Legislative Session is in full swing. We also have a fairly significant legislative report due at the end of the month. A lot is happening around the HCBS Settings Rule. Now that the provider self-assessments have been completed, we’re working on the validation aspect of that, which will include in-person site visits and remote desk-level reviews.
Craig Patterson: We have a variety of other internal updates and things we’re working on around systemic change; however, most of that is internal and not something in which this group would be interested. We’re continuing to add various personnel to meet a variety of requirements. We’re also working through possible adjustments to the PCP process.
Alan Cobo-Lewis – Director, Center for Community Inclusion and Disability Studies: In the minutes from the last meeting, I saw that there was a question raised about how long people spend on the waitlists (From last month’s minutes: How long are people waiting for Section 29, from when the application is complete to when an offer is made?). The response was along the lines of that being difficult for the Department to determine (Paul’s response from the minutes: Paul: We can’t literally answer that question because we start measuring from when a person is found eligible. It’s one of the many data issues we have with this. We feel quite certain that, though the terminology was different, and the word waitlist wasn’t used in the previous Administration, a waitlist started developing a little more than a year ago. We assume there are people who have been waiting a year or more. We receive approximately 30 applications for Section 29 each month. So, it’s reasonable to assume people have been waiting more than a year, with one caveat – we’ve looked at the turnover data and we’ve had about an 11% turnover for Section 29 between October 2018 and October 2019, and we did back fill those slots. Though there has been a waitlist, the people at the very front have been served as we’ve replaced those slots.) For the 4 waivers – Sections 21, 29, 18, and 20 – what is the Department thinking about in terms of determining how long people are waiting on the waitlists?
Betsy: I don’t have that information. This question was asked previously, and I think Paul answered it to the extent possible in the last meeting.
Alan: The question was also asked of the Commissioner in the November debrief meeting with the Health and Human Services (HHS) Committee, and her response was that the Department included this information in its October Quarterly Update; however this specific data wasn’t included in that update. I would ask the Department to provide that information in its next Quarterly Update. My second question is regarding behavioral consultation. Section 21 includes behavioral consultation, whereas Section 29 does not. The anecdote I’ve heard is that no one actually provides it because of the rates. To what extent will rate setting look at that service? And, what about including behavioral consultation in Section 29? Per statute, Section 29 could include this service.
Betsy: What I can tell you about the behavioral consultation service right now is it’s something we’re looking at in general across the waivers. We’re looking into how to approach that both with the rates and the service. Regarding what that would look like, I don’t have specifics, but it’s definitely something into which we’re looking and there will be more information coming out as we proceed with that.
Bonnie-Jean Brooks – OHI: Regarding the implementation of the HCBS Settings Rule and its various stages – I know there will be a validation process that community case managers are involved with, part of which includes a site visit. There will also be training involved with this. And, as a result of the site visit, there will also be a requirement of documentation of the visit. I haven’t seen anything in writing regarding whether any one of those three functions are reimbursable under the case management rates.
Betsy: I’ll check on that and let the group know for sure, I believe it is, but I want to double check. Also, any day now we’ll be sending out an email about a webinar with updated information for any or all who would like to join. This will include next steps as well as information about the training you mentioned. In the meantime, I’ll double check about reimbursement for case management.
Cullen: Thank you, Betsy and Craig, for being here and for providing an update on what’s going on at OADS.
Featured Speakers: Kim Humphrey, Founder of Community Connect. communityconnectme.org Topic: Planning for the Legislative Session and beyond, and ways in which you can connect with your Legislators.
Cullen: Today we have Kim Humphrey presenting on Community Connect and the ways in which you can plan for this legislative session and beyond. Thanks for presenting today, Kim!
Kim Humphrey: Feedback is essential when it comes to advocacy efforts over time, and since we’re looking not only at the current Legislative Session, but legislative races etc., I’m passing out notecards and asking that you write one comment about today’s topic (Kim’s email and cell phone number were provided to the remote sites). Your comment can be based on something you hear in the presentation, something about your own legislative interactions, your experience if you sent a postcard as part of the Postcard Project, etc.
Begin Presentation (Click here for the presentation)
Kim: People benefit from connecting with each other. There are diverse voices in the ID/DD world, so one uniformed message is difficult, but one aim is to make disability more visible. When you connect you start to build relationships, and these relationships open the door for more involvement and being invited around various tables because you’re a known resource. Then, the ID/DD voice is around that table, something from which everyone benefits. This is what happened with the Long-Term Care Workforce Commission – the ID/DD voice was around the table because of connections forged.
Discussion:
-It was stated that there were a few bills that were not included Kim’s presentation, specifically:
Kim: Also, you can still continue to send postcards as part of the Postcard Project. More information is available on the Community Connect website.
Cullen: Thank you, Kim, it is apparent that a lot of time and effort went into this presentation, which will be very helpful for connecting with legislators this session, and other advocacy efforts both now and in the future. Well done!
End Presentation (round of applause)
Featured Speakers: Rachel Dyer, Associate Director, Maine Developmental Disabilities Council. www.maineddc.org Topic: Results of National Core Indicators Survey.
Cullen: Each year Rachel leads Maine’s National Core Indicators (NCI) Adult Consumer Survey efforts. When I read through Rachel’s presentation, Maine stands out with getting wide participation, allowing for a more accurate picture of what’s going on with the system. Thank you, Rachel, for your work on this over the years and for presenting today!
Rachel Dyer: One thing I like about data, specifically data that’s reliable and valid as with the NCI data, is that it tells you a story and gives you some places for comparison; though the interpretation of it is entirely up to you. It gives you something beyond stories – it tells you an aggregate of stories.
Begin Presentation (Click here for the presentation)
Discussion:
-It was stated that if you compare the voting indicator result to the overall population that votes it’s a great percentage. It was stated that in states that aren’t as deinstitutionalized as Maine, the results are likely lower. It was stated that Maine has a law that providers must offer people supported the opportunity to vote. If the person doesn’t want to vote they must fill out a form stating so for their file. Some agencies may not know that, and we ought to have more education about this.
-A self-advocate stated that asking about if someone has friends would play a role in if they can see friends. A parent stated that she was thrown off about the question regarding if her daughter had a say in choosing her case manager. It was stated that sometimes the people answering the questions aren’t ideal narrators.
Rachel: The part of survey that the individual answers is designed to be valid and reliable based upon the individual’s answers.
Mark Kemmerle – Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB): If you have a good relationship with your direct care workers, you might think of them as friends. However, the survey wants to make a distinction between paid support workers and friends.
-It was asked if there could be a correlation between Maine’s aging population and having such a higher level of full guardianship and state guardianship versus other states.
Rachel: That’s a good point. You can get insight into some of this when you dig into the data itself. Regarding the employment-related indicators, this is a great example of a place where it would be really great to see some attention paid. Why isn’t employment getting into people’s PCPs? Employment likely won’t be a successful endeavor if it’s not in the plan. I’m pretty excited to be working with a Department that would like to make some changes in these areas. The NCI data offers real potential for us to say, “we’re making a difference”, or “here is where we could make a difference”.
-It was asked how the NCI information is disseminated within the state.
Rachel: That’s part of why I’m here today. This would be good to know. I like data, but I would like it to be useful and used!
-It was stated that NCI also conducts Staff Stability Surveys. There are 26 states now participating in that survey; Maine has not been participating. It was stated that as this group continues open dialogue with OADS, encouraging them to support Maine in participating in this survey in order to gather needed data would be advantageous.
-It was asked if the selection of participants is truly random, considering there are some people who have participated numerous times. It was stated that the case managers play a large role in this, as they get notified of participant selection in the survey; certain case managers may feel like that’s extra work and decline.
Rachel: The names are selected randomly from everyone who is eligible to participate in the process. Then, the case managers are informed that this person has been selected to participate, and their role is to ascertain whether the person wants to participate, get permission if they say yes, and to gather certain information needed. The participation rate varies greatly between agencies, and this level of participation I think is perhaps why some of the same people keep getting selected. Also, the number selected in order to get enough participants is very large, but it is true random selection from the outset. However, relying upon someone to facilitate the process of participating is probably a weakness. Over the past several years there have been changes in the case management system. The first year a third of the people receiving services had case managers who were state employees, and the overall participation rate was much higher. Workforce definitely plays a role in this.
-Alan Cobo-Lewis emailed HSRI (Human Services Research Institute) with questions regarding this aspect of the NCI Survey. A summary of the questions asked (in black italic font) and HSRI responses (in red italic font) is below:
Cullen: Thank you, Rachel, for this informative presentation!
End Presentation (round of applause)
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group has been working on a more user-friendly diagram for the Developmental Services Lifelong CoC (DD CoC), which was finalized in our meeting earlier this morning. It has been designed to be a simple overview and an effective tool for the Legislature. The layout is much more linear and illustrates the entire lifespan, and the Principles for Developing a Continuum of Support, which was also finalized this morning, is designed to accompany the diagram.
Disability Rights Maine (DRM) Update:
Foxfire Buck: Barrett Littlefield is our new attorney in the Rockland office, and we’re very happy to have him on board!
Federal & Housing Updates:
Cullen: The President signed a minibus budget package for FY 20, which included favorable funding for HUD. Having HUD receive the vital funding necessary for housing is fantastic.
State Legislature Update:
Andy Taranko: There are a bunch of bill titles that do not have LD numbers or bill text yet but will be coming out of the Revisor’s office within the next few weeks. There are about 400 bills in consideration in the Second Session of the 129th Legislature. The Governor will give her State of the State address on January 21st, which is around when we are hoping the Supplemental Budget will be released.
Announcements/Handouts:
Helen Hemminger – Maine Children’s Alliance: Regarding the Census, any group that wishes to have guidance or training please do not hesitate to reach out. People will start to get Census mailings the 3rd week in March.
The next meeting will be on Monday, February 10, 2020, 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 and Topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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.
Cullen noted with sadness that Arthur Clum passed away within the last month. Arthur was praised for the significant accomplishments he has made to improve the lives of people with intellectual and developmental disabilities in Maine. The group held a moment of silence for Arthur’s decades-long dedication and key advocacy efforts.
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: It’s great to be back here. Paul and I spent a fair amount of time with you all last month and shared a lot of information about where we’re thinking of going. We appreciated the conversation and the feedback we received at that meeting. Right now, we’re very busy now that the Legislative Session is in full swing. We also have a fairly significant legislative report due at the end of the month. A lot is happening around the HCBS Settings Rule. Now that the provider self-assessments have been completed, we’re working on the validation aspect of that, which will include in-person site visits and remote desk-level reviews.
Craig Patterson: We have a variety of other internal updates and things we’re working on around systemic change; however, most of that is internal and not something in which this group would be interested. We’re continuing to add various personnel to meet a variety of requirements. We’re also working through possible adjustments to the PCP process.
Alan Cobo-Lewis – Director, Center for Community Inclusion and Disability Studies: In the minutes from the last meeting, I saw that there was a question raised about how long people spend on the waitlists (From last month’s minutes: How long are people waiting for Section 29, from when the application is complete to when an offer is made?). The response was along the lines of that being difficult for the Department to determine (Paul’s response from the minutes: Paul: We can’t literally answer that question because we start measuring from when a person is found eligible. It’s one of the many data issues we have with this. We feel quite certain that, though the terminology was different, and the word waitlist wasn’t used in the previous Administration, a waitlist started developing a little more than a year ago. We assume there are people who have been waiting a year or more. We receive approximately 30 applications for Section 29 each month. So, it’s reasonable to assume people have been waiting more than a year, with one caveat – we’ve looked at the turnover data and we’ve had about an 11% turnover for Section 29 between October 2018 and October 2019, and we did back fill those slots. Though there has been a waitlist, the people at the very front have been served as we’ve replaced those slots.) For the 4 waivers – Sections 21, 29, 18, and 20 – what is the Department thinking about in terms of determining how long people are waiting on the waitlists?
Betsy: I don’t have that information. This question was asked previously, and I think Paul answered it to the extent possible in the last meeting.
Alan: The question was also asked of the Commissioner in the November debrief meeting with the Health and Human Services (HHS) Committee, and her response was that the Department included this information in its October Quarterly Update; however this specific data wasn’t included in that update. I would ask the Department to provide that information in its next Quarterly Update. My second question is regarding behavioral consultation. Section 21 includes behavioral consultation, whereas Section 29 does not. The anecdote I’ve heard is that no one actually provides it because of the rates. To what extent will rate setting look at that service? And, what about including behavioral consultation in Section 29? Per statute, Section 29 could include this service.
Betsy: What I can tell you about the behavioral consultation service right now is it’s something we’re looking at in general across the waivers. We’re looking into how to approach that both with the rates and the service. Regarding what that would look like, I don’t have specifics, but it’s definitely something into which we’re looking and there will be more information coming out as we proceed with that.
Bonnie-Jean Brooks – OHI: Regarding the implementation of the HCBS Settings Rule and its various stages – I know there will be a validation process that community case managers are involved with, part of which includes a site visit. There will also be training involved with this. And, as a result of the site visit, there will also be a requirement of documentation of the visit. I haven’t seen anything in writing regarding whether any one of those three functions are reimbursable under the case management rates.
Betsy: I’ll check on that and let the group know for sure, I believe it is, but I want to double check. Also, any day now we’ll be sending out an email about a webinar with updated information for any or all who would like to join. This will include next steps as well as information about the training you mentioned. In the meantime, I’ll double check about reimbursement for case management.
Cullen: Thank you, Betsy and Craig, for being here and for providing an update on what’s going on at OADS.
Featured Speakers: Kim Humphrey, Founder of Community Connect. communityconnectme.org Topic: Planning for the Legislative Session and beyond, and ways in which you can connect with your Legislators.
Cullen: Today we have Kim Humphrey presenting on Community Connect and the ways in which you can plan for this legislative session and beyond. Thanks for presenting today, Kim!
Kim Humphrey: Feedback is essential when it comes to advocacy efforts over time, and since we’re looking not only at the current Legislative Session, but legislative races etc., I’m passing out notecards and asking that you write one comment about today’s topic (Kim’s email and cell phone number were provided to the remote sites). Your comment can be based on something you hear in the presentation, something about your own legislative interactions, your experience if you sent a postcard as part of the Postcard Project, etc.
Begin Presentation (Click here for the presentation)
Kim: People benefit from connecting with each other. There are diverse voices in the ID/DD world, so one uniformed message is difficult, but one aim is to make disability more visible. When you connect you start to build relationships, and these relationships open the door for more involvement and being invited around various tables because you’re a known resource. Then, the ID/DD voice is around that table, something from which everyone benefits. This is what happened with the Long-Term Care Workforce Commission – the ID/DD voice was around the table because of connections forged.
Discussion:
-It was stated that there were a few bills that were not included Kim’s presentation, specifically:
- LD 1974, which pertains to telehealth and would allow for billing pertaining to case management services delivered via telehealth means (FaceTime, Zoom, etc.). (Click here for more information on that bill.); and
- LD 852, a parent-initiated bill which was discussed at the last meeting, and is up for recall in the Legislature, as it died in between Chambers when the Legislature adjourned last session. (Click here for more information on that bill.)
Kim: Also, you can still continue to send postcards as part of the Postcard Project. More information is available on the Community Connect website.
Cullen: Thank you, Kim, it is apparent that a lot of time and effort went into this presentation, which will be very helpful for connecting with legislators this session, and other advocacy efforts both now and in the future. Well done!
End Presentation (round of applause)
Featured Speakers: Rachel Dyer, Associate Director, Maine Developmental Disabilities Council. www.maineddc.org Topic: Results of National Core Indicators Survey.
Cullen: Each year Rachel leads Maine’s National Core Indicators (NCI) Adult Consumer Survey efforts. When I read through Rachel’s presentation, Maine stands out with getting wide participation, allowing for a more accurate picture of what’s going on with the system. Thank you, Rachel, for your work on this over the years and for presenting today!
Rachel Dyer: One thing I like about data, specifically data that’s reliable and valid as with the NCI data, is that it tells you a story and gives you some places for comparison; though the interpretation of it is entirely up to you. It gives you something beyond stories – it tells you an aggregate of stories.
Begin Presentation (Click here for the presentation)
Discussion:
-It was stated that if you compare the voting indicator result to the overall population that votes it’s a great percentage. It was stated that in states that aren’t as deinstitutionalized as Maine, the results are likely lower. It was stated that Maine has a law that providers must offer people supported the opportunity to vote. If the person doesn’t want to vote they must fill out a form stating so for their file. Some agencies may not know that, and we ought to have more education about this.
-A self-advocate stated that asking about if someone has friends would play a role in if they can see friends. A parent stated that she was thrown off about the question regarding if her daughter had a say in choosing her case manager. It was stated that sometimes the people answering the questions aren’t ideal narrators.
Rachel: The part of survey that the individual answers is designed to be valid and reliable based upon the individual’s answers.
Mark Kemmerle – Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB): If you have a good relationship with your direct care workers, you might think of them as friends. However, the survey wants to make a distinction between paid support workers and friends.
-It was asked if there could be a correlation between Maine’s aging population and having such a higher level of full guardianship and state guardianship versus other states.
Rachel: That’s a good point. You can get insight into some of this when you dig into the data itself. Regarding the employment-related indicators, this is a great example of a place where it would be really great to see some attention paid. Why isn’t employment getting into people’s PCPs? Employment likely won’t be a successful endeavor if it’s not in the plan. I’m pretty excited to be working with a Department that would like to make some changes in these areas. The NCI data offers real potential for us to say, “we’re making a difference”, or “here is where we could make a difference”.
-It was asked how the NCI information is disseminated within the state.
Rachel: That’s part of why I’m here today. This would be good to know. I like data, but I would like it to be useful and used!
-It was stated that NCI also conducts Staff Stability Surveys. There are 26 states now participating in that survey; Maine has not been participating. It was stated that as this group continues open dialogue with OADS, encouraging them to support Maine in participating in this survey in order to gather needed data would be advantageous.
-It was asked if the selection of participants is truly random, considering there are some people who have participated numerous times. It was stated that the case managers play a large role in this, as they get notified of participant selection in the survey; certain case managers may feel like that’s extra work and decline.
Rachel: The names are selected randomly from everyone who is eligible to participate in the process. Then, the case managers are informed that this person has been selected to participate, and their role is to ascertain whether the person wants to participate, get permission if they say yes, and to gather certain information needed. The participation rate varies greatly between agencies, and this level of participation I think is perhaps why some of the same people keep getting selected. Also, the number selected in order to get enough participants is very large, but it is true random selection from the outset. However, relying upon someone to facilitate the process of participating is probably a weakness. Over the past several years there have been changes in the case management system. The first year a third of the people receiving services had case managers who were state employees, and the overall participation rate was much higher. Workforce definitely plays a role in this.
-Alan Cobo-Lewis emailed HSRI (Human Services Research Institute) with questions regarding this aspect of the NCI Survey. A summary of the questions asked (in black italic font) and HSRI responses (in red italic font) is below:
- It was asked if the same unique codes could be used each year, while still upholding the randomization/anonymization of the selection process. This could allow for analysis over time for people who participate frequently. HSRI responded stating that states generally use different identifying codes each year, though there have been instances where the same codes have been used. This is something into which Maine could look further.
- It was asked if HSRI has any information or best practices regarding the participant selection process and consent collection practices, specifically pertaining to the issue raised in the meeting about case management agency participation rates varying greatly. HSRI responded stating that consent procedures for participants vary from state to state, including not requiring consent, gathering consent at meetings such as the PCP meeting. Some states use case managers for consent gathering procedures, whereas other states use other third parties to collect this, if it’s collected. This is something into which Maine could look further.
Cullen: Thank you, Rachel, for this informative presentation!
End Presentation (round of applause)
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group has been working on a more user-friendly diagram for the Developmental Services Lifelong CoC (DD CoC), which was finalized in our meeting earlier this morning. It has been designed to be a simple overview and an effective tool for the Legislature. The layout is much more linear and illustrates the entire lifespan, and the Principles for Developing a Continuum of Support, which was also finalized this morning, is designed to accompany the diagram.
- There was a motion to approve the revised DD CoC diagram and Principles for Developing a Continuum of Support, which was seconded, and approved unanimously.
- There was a motion to approve the revised Blueprint for Effective Transition diagram and narrative, which was seconded, and approved unanimously.
Disability Rights Maine (DRM) Update:
Foxfire Buck: Barrett Littlefield is our new attorney in the Rockland office, and we’re very happy to have him on board!
Federal & Housing Updates:
Cullen: The President signed a minibus budget package for FY 20, which included favorable funding for HUD. Having HUD receive the vital funding necessary for housing is fantastic.
State Legislature Update:
Andy Taranko: There are a bunch of bill titles that do not have LD numbers or bill text yet but will be coming out of the Revisor’s office within the next few weeks. There are about 400 bills in consideration in the Second Session of the 129th Legislature. The Governor will give her State of the State address on January 21st, which is around when we are hoping the Supplemental Budget will be released.
Announcements/Handouts:
Helen Hemminger – Maine Children’s Alliance: Regarding the Census, any group that wishes to have guidance or training please do not hesitate to reach out. People will start to get Census mailings the 3rd week in March.
The next meeting will be on Monday, February 10, 2020, 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 and Topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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].