May 14, 2018
Minutes
Minutes
Present: Lydia Dawson, Janet Rancourt, Ann-Marie Mayberry, Terry Scoh, Mark Kemmerle, Debbie Dionne, David Cowing, Chip MacGowan, Ed & Suellen Doggett, Sue Murphy, Erin Rowan, Emily Melo, Jenn Brooking, Joanna Bulger, Jerry Silbert, Glenda Wilson, Lisa Klessens, Jamie Whitehouse, Julie Brennan, Staci Converse, Luc Nya, Vicky Shaw, Bryan Gordon, Julie Joyce, Celeste Henriquez, Peter Stuckey, Mary Chris Semrow, Rachel Dyer, Frances Ryan, Misty Niman, Tammy Pike, Margaret Cardoza, Patrick Moore, Tammy Pike, Emily Spencer, Julian Baer, Commissioner Ricker Hamilton, Cullen Ryan, and Vickey Rand. Via Zoom – (Bangor): Paula Matlins, Andrew Cassidy, Steve Johnson. (Sanford): Brenda Smith. (Winthrop): Ann Long and. (Auburn): Ann Bentley and Darla Chafin. (Bridgton): Katie Bennett. (Brunswick): Colleen Gilliam, Ray Nagel, and Holly Randall. (Farmington): Darryl Wood, Kristin McPherson, and Joyce Daggett. (Kittery): Dennis and Debbie Dean. Misc. sites: Stacy Lamontagne, Laurie Raymond, Ann Tobias.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Cullen: We are fortunate to have Commissioner Ricker Hamilton joining us at 1:00 today. I wanted to preface the meeting with some information about the way in which Commissioner Hamilton will be answering questions when he arrives. The Department prefers to receive written questions in advance, and will then answer those questions only. Questions for Commissioner Hamilton were solicited at previous meetings, compiled, and sent to him in advance of today’s meeting. I wanted to prepare you for that because I know this group is more accustomed to an interactive dialogue. If he takes additional questions, that will be great. But he may not. We will have to see.
We’re going to hear about what happened with the Legislature in more detail, but first I wanted to provide a brief overview. The Legislature adjourned Sine Die on 5/3, leaving numerous bills on the Special Appropriations Table (“the Table”), including bills the Coalition has been following. It’s possible the Legislature could convene a Special Session to address the unfinished business – it would take the Governor or legislative leadership to do so. There are many critical bills on the Table and there is a need for the Legislature to go back in session. I will be sending out a letter on behalf of various groups to the Legislature urging them to reconvene to address the bills on the Table, which have broad, bipartisan support, and for which there is money available for funding. One of the bills on the Table, for example, is LD 976, the DSP rate increase bill. If this bill is not enacted the rates will revert back to the previous, lower rates on 7/1/2018. I am wondering if this group would like to vote to send a letter to the Legislative Leadership urging them to reconvene to address this unfinished business.
Federal Update:
Cullen: Congress enacted an FY 18 omnibus budget bill, which was very favorable to HUD programs, including increases to Section 8 in all forms, HOME, CDBG, and the Section 811 program, all of which provide housing to the populations about whom we care. Senator Collins played a key role in this, as she advocated for increased resources as Chair of the Senate T-HUD Committee. This FY 18 omnibus budget bill funds the federal government through 9/30/2018. Congress is now working on the FY 19 budget. The good news is that Congress often builds off of the current fiscal year budget when they craft the next year’s budget. However, the President’s FY 19 budget would severely affect resources, proposing drastic cuts to programs that serve vulnerable populations, including housing and services resources. It appears that Congress is not going to consider the President’s budget, and is instead crafting their own. The House has started this process already, and the Senate will follow suit, though that may not be soon. It also appears that Congress is looking to hold on moving this work forward until after the August recess, which really means after the November election. This provides a window of opportunity to reach out to the Delegation, urging them to protect funding for housing and services, including Medicaid, for the people about whom you care.
State Legislature Update:
Lydia: The only way the Legislature reconvenes to act on all of those bills on the Table is if Leadership or the Governor calls them back into session. The majority of each of the caucuses would have to vote to reconvene. It appears that Medicaid expansion is the lynchpin. A lawsuit has been filed, so it’s thought that the result of that lawsuit will affect the Legislature reconvening. There are a number of timeframes for the bills left on the Table. June 30th is the big one for rate cuts, as the DSP rate increases would sunset on 6/30, and revert back to the old rates, which would represent an approximate 12% cut compared with today’s rates. During the time since the rate increases went into effect, the State minimum wage has also increased, creating an even greater deficit. If the rates sunset on 6/30 we would be looking at widespread closings.
If the Legislature does not reconvene before the next Legislature convenes, then all of the bills not yet enacted as law (bills on the Table, bills sitting between the two chambers, etc.) will die, and everything has to start from the beginning. LD 967 has been two-years in the making and would revert back to square one if not enacted. Bills pertaining to Children’s Services are stuck in this limbo as well, such as LD 1820 (see information on LD 1820 below). There’s a similar problem with DSP rates in Children’s Services. Section 28 essentially has a waitlist after the waitlist because once a funding offer is made it’s hard to find services. Agencies can’t hire and retain staff because the wages are too low. Provider waitlists have increased dramatically as well. The waitlist for in-home, nonspecialized services is well over 300 people currently. At what point is it not an operable service anymore? For us, that point is June 30th. We continue to be very hopeful that the Legislature will address the unfinished business, because that hope is all we have at this point. Everyone says they’re supportive of these bills, there’s no argument, everyone agrees, and yet there is still inaction.
Bill on the Table that this group has been following include:
-A parent stated that she contacted her local Legislator, who replied that this bill should’ve received its full two-year funding in the previous legislative session. He advocated writing House majority leadership, asking why it never came off the Table in January, when they Legislature convened for the second session.
Peter Stuckey: When you call your Legislator and he tells you to call his leader, that’s a problem. The people who we elect need to lead. Everyone in that Legislature is a leader. When you call them up they ought to be doing that; they represent you.
Lydia: Maybe you have a suggestion, because one of the things I struggle with is getting them refocused on this. Getting them to act as a Legislature, and to realize that it’s unhelpful to play the blame game. How do we get the Legislature to work unitedly?
Peter: The leaders try very hard to juggle numerous issues and priorities. If we have people in the Legislature, but not necessarily in leadership, it’s important that they hear from us that we need them to carry the water, they need to be talking to their leaders, and figuring out how to get themselves into their offices with these messages. It needs to be consistent, and there needs to be a few people who are birddogging leadership with the issues we feel are important. The leaders have so much pressure from not only their colleagues, but from lobbyists, their parties, and all kinds of places, that finding people who will find an inside path to leadership is really the key. It doesn’t have to be 40 legislators, it needs to be maybe three of the right people who are ready to fight and won’t let it go. And, that’s a challenge. Someone other than the constituents need to be there fighting this fight too.
-It was asked if a good strategy might be to contact legislators and urge them to ask leadership to call a Special Session.
Peter: Yes, and as far as leadership, the Speaker in the House and the Senate President have the authority to call a Special Session. (Per the Maine Constitution a special session can be convened by the President of the Senate and Speaker of the House, with the consent of a majority of legislators from each political party.)
-A parent stated that it seems like putting a face to the name has a dramatic affect. When she testified at a Public Hearing, it appears Committee members didn’t truly understand the gravity of what was at stake, and the personal, visual touches were extremely helpful. It was suggested that an effective advocacy strategy could be having a collection of pictures of the people who will be affected by the Legislature’s inaction, and disseminate it before the DSP rates sunset on 6/30. This would humanize the effect of their work, or lack thereof.
Lydia: I think that’s incredibly important. I think it’s also important to not allow the Legislature to bifurcate itself. If one side fails, they all fail. Everyone collectively failed together; and if this succeeds everyone will collectively succeed together.
-It was stated that when letters to leadership are sent, it would be advantageous to cc your local legislators.
Cullen: We can create and disseminate a simple template to use when contacting Legislative Leadership.
-It was stated that among the unfinished business in the Legislature is education funding. It was suggested that the Legislature will not be able to avoid convening because this will have to be addressed prior to the start of the next Legislature, likely before the start of the next school year. It was also noted that convening a Special Session doesn’t ensure everything left unfinished will be addressed; there will be an agenda to which they will adhere. It would be advantageous to request that the bills you care about are funded off the Table in a Special Session.
Lydia: I’m not as confident that the education funding piece will compel them to convene. Any deficit in education funding can be carried until it’s eventually funded. We feel confident that if the Legislature reconvenes, there’s no real hurdle in getting those bills passed. The issue is that they won’t come back until there’s a deal in place. I would encourage anyone who hasn’t listened to the Maine Calling segment on this to do so. (Click here for the Maine Calling program).
-It was stated that this Maine Calling piece was eye-opening; it felt like these bills are being held hostage, which is frightening.
Featured Speaker: Ricker Hamilton, Commissioner, DHHS, www.maine.gov/dhhs. Topic: Services for people with ID/DD.
Cullen: Ricker, I want to thank you very much for making the time to be here today. We’re thrilled to have you!
(Participants introduced themselves.)
Cullen: Thank you again for being here. As you know this group has been in existence since 2006. A lot of what we do involves pulling everyone together, in one place, to talk about people with ID/DD, and to determine the ways in which we can make the world better for them. The Coalition also acts as an information clearinghouse. Having the Department around the table is key. I know we gave you some questions in advance to start the dialogue. Folks here are happy to have an interactive dialogue with you at any time. My son and others would not be receiving an adequate level of care but for the expansion of Section 29. The expansion of Section 29 services and the doubling of the cap are initiatives that you personally, and the Department, fully supported, for which we are grateful. Those ideas, the ways in which Section 29 could be transformed to better serve people with ID/DD, started with this group. The Coalition put these ideas forth, the Department enthusiastically agreed, and worked diligently to see that these improvements were implemented. This is a great example of the ways in which we have worked together to change the system of care for people with ID/DD by cultivating a collaborative partnership, and having a consistent, open, interactive dialogue.
Commissioner Hamilton: Thank you very much, I’m happy to be here. It’s great to see so many familiar faces. I look forward to continuing the dialogue. The system works better when there’s collaboration and trust. The waitlist has been a top priority of the administration for seven years; perhaps your voices could assist in helping that come to fruition.
[Commissioner Hamilton read through the list of questions previously submitted to him, and responded. The questions are italicized and underlined below, with his response immediately following each question. Instances in which members of the group provided additional information/more context for the question are in parentheses].
-It was stated that the group can be a voice with him.
Cullen: I’ve spent a lot of time in front of the Legislature speaking about the waitlists, and this group is well informed so it can advocate with you and speak to the magnitude of the issue. The waitlists are a lot different now than in 2008; they’ve grown significantly.
Commissioner Hamilton: Lobbying groups for agencies said funding the waitlists wasn’t necessary. (The group appeared perplexed). Is this your first time hearing that? That’s why you need unfiltered communication with the Department. I couldn’t understand why we were the only ones talking about it. I was perplexed as to why an agency, saying it needed more money to provide the service, was saying “no, we don’t need to fund the waitlist.” Then, when the session was over, within minutes we had phone calls from concerned parents and family members. How can we best reach out to those parents and family members?
-It was stated that currently there are providers who have empty beds and can’t fill them because they can’t pay their staff enough money. It was stated that this is one of many reasons why having waitlist information is helpful. This is an ongoing problem, and the rates are also not sufficient.
Commissioner Hamilton: I’m as frustrated as anyone about the Legislature not completing its job. The rates were not the issue previously. We have a lot of offers out there now. I was the lone voice back in November about the minimum wage increase and the unintended consequences it would have. The other issue is hiring people. I sit on the Workforce Board. They’re saying “give me someone who will show up, I will train them.” That’s why we talk about incentivizing work. There’s more jobs than people to fill them. I’m right there with you.
Cullen: There was one question about the Person-Centered Planning (PCP) process that you didn’t address:
The Person-Centered Planning (PCP) process used to be much more thoughtful and inclusive. Did the Department used to organize the PCP meetings? How can we work together to get back to how the PCP used to work?
Commissioner Hamilton: That question wasn’t included on the list I received. How has the PCP process changed?
-It was stated that its inclusion in EIS has caused various changes, including character limits and goal limits, and it’s now more tied to service delivery. The PCP’s inclusion in EIS has been problematic since its inception, approximately four years ago.
Commissioner Hamilton: This is the first I’m hearing of this. If there’s an issue we ought to be talking about a solution to that issue. I will look into that. Send me the specifics, and we’ll look into this.
-It was stated the PCP requires numerous justifications, to the point that it’s no longer truly about who the individual is as a person; it comes down to every little service being provided. Due to this and the character/goal limits, it’s very piecemealed in order to meet the bare minimum required for medical necessity. And, often times this is still not sufficient.
Commissioner Hamilton: Maybe it would help if a couple of us got together to go over this. I want a better idea of the issue. I have no idea if increasing the character limit is a simple fix, but if it is then let’s do it. If it’s not a simple fix, now’s the time to know.
Cullen: Thank you for taking the time to answer our questions, and for the transparency that represents. I’m happy to make changes if there is anything I can do to help things work better here at the Coalition. What I hear from you is that we haven’t done enough in terms of pushing to get the waitlists funded. We are well-poised to advocate for fully funding the waitlists alongside you and the Department, and will continue to do so.
-It was stated that more than simply funding the waitlists, we ought to be looking at the styles and methods of service delivery within the system. Instead of looking at numbers, looking at quality and how much independence and self-direction people have in terms of their funding and services. It was stated that we ought to be looking to see if there are other, better ways as well.
Commissioner Hamilton: I think your comment speaks to the future. What’s best for people with ID/DD? Is there a happy medium? Those are the kinds of discussions that are really productive to have. Most of my career was in elder abuse. Maine providers, Maine families, Maine people – they have been extraordinary. There are better solutions for us. You work 24-hour days in your own home to provide care. I’m hoping there’s a new beginning here. The door is open, we want to work together. I watch what people do, not what they say. We have to have trust in one another. We can communicate and collaborate, but what you say and do in the public will send a clear message regarding how open the Coalition is to us. Like the spreading of misinformation in the media. This Coalition will disagree with us from time to time, that’s how it works, but we ought to be working collaboratively.
-It was asked how to move forward the concepts of improving communications and social work values in a department as large and as complex as DHHS.
Commissioner Hamilton: All anyone can do is the very best they can. I’ve been blessed with some very great people. We want input. We respond to every question. It can be overwhelming, but they do it because that’s what we need to do. We thought we have it right with opioid health homes, because it was evidenced-based, but we only had it nearly right. “Is this in the best interest of the person we serve?” – the further away we get from that, the more down the rabbit hole we go. Is this the right thing to do? If so, then put your head down and do it.
-It was stated that encouragement and communication can be very difficult sometimes, and sometimes messages can give the perception of nonsupport, when that wasn’t the intention. This will happen from time to time.
Commissioner Hamilton: What’s been very hurtful is to have someone say that I can release information at the highest level, knowing that’s not true. If you don’t hear something from the Department, or from me, there might be legal reasons why. Your connection to the Department exists, regardless of what’s going on.
-It was stated that his compassion and his desire to connect is evident, and apologies were given if there’s been any hard feelings. There’s a lot of moving parts. It was asked if this Coalition could meet with him, provide a list of questions, and have a conversation. A parent stated that this is all about real life, what’s happening to parents right now.
Commissioner Hamilton: Let’s start with submitting questions in writing. We would love to meet with parents. If there’s a parents group, that consists of parents, I would love to talk about that.
-It was asked what the reimbursement rates should be.
Commissioner Hamilton: All I’ll say is ask the legislators to finish their job.
Cullen: It’s really great to have you here; thank you Ricker. As a parent who has a lot of contact with other parents, nothing is more frightening than not knowing what’s going to happen. When we as parents die, we hand the keys over to DHHS to do the driving, and that’s a big deal. We need to have you here to know you’re still working with us and engaging us to get the work done that we as parents can’t do. We’re all in this together. Direct communication is the antidote to everything. The Department has worked very hard to move away from a one-size fits all model. That’s very commendable. I hope you’ll come back to a future meeting.
Commissioner Hamilton: What you just said hits home, because I’m a parent. DHHS doesn’t provide direct services, we contract with agencies who provide services. Absolutely it’s incumbent upon us. You’re handing the person over to a system that includes the Department.
Cullen: That’s why we try to have everyone at the table, because it is a system, and we’re all better for working together towards the same end. Thank you very much, again, for being here. (Large round of applause.)
Handouts/announcements:
The next meeting will be on June 11, 2018
Featured Speakers: Carol A. Snyder, Maine Field Human Resources Manager, and Amy Wilson, Facility Manager, LogistiCare. Topic: LogistiCare 101 – The latest on this important transportation service.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Cullen: We are fortunate to have Commissioner Ricker Hamilton joining us at 1:00 today. I wanted to preface the meeting with some information about the way in which Commissioner Hamilton will be answering questions when he arrives. The Department prefers to receive written questions in advance, and will then answer those questions only. Questions for Commissioner Hamilton were solicited at previous meetings, compiled, and sent to him in advance of today’s meeting. I wanted to prepare you for that because I know this group is more accustomed to an interactive dialogue. If he takes additional questions, that will be great. But he may not. We will have to see.
We’re going to hear about what happened with the Legislature in more detail, but first I wanted to provide a brief overview. The Legislature adjourned Sine Die on 5/3, leaving numerous bills on the Special Appropriations Table (“the Table”), including bills the Coalition has been following. It’s possible the Legislature could convene a Special Session to address the unfinished business – it would take the Governor or legislative leadership to do so. There are many critical bills on the Table and there is a need for the Legislature to go back in session. I will be sending out a letter on behalf of various groups to the Legislature urging them to reconvene to address the bills on the Table, which have broad, bipartisan support, and for which there is money available for funding. One of the bills on the Table, for example, is LD 976, the DSP rate increase bill. If this bill is not enacted the rates will revert back to the previous, lower rates on 7/1/2018. I am wondering if this group would like to vote to send a letter to the Legislative Leadership urging them to reconvene to address this unfinished business.
- There was a motion to send a letter to Legislative Leadership urging them to convene for a Special Session to address the unfinished business on the Table. The motion was seconded.
- Discussion on the motion: It was stated that it would be helpful for individuals to reach out to Legislative leadership with this request as well.
- After discussion, the motion passed unanimously.
Federal Update:
Cullen: Congress enacted an FY 18 omnibus budget bill, which was very favorable to HUD programs, including increases to Section 8 in all forms, HOME, CDBG, and the Section 811 program, all of which provide housing to the populations about whom we care. Senator Collins played a key role in this, as she advocated for increased resources as Chair of the Senate T-HUD Committee. This FY 18 omnibus budget bill funds the federal government through 9/30/2018. Congress is now working on the FY 19 budget. The good news is that Congress often builds off of the current fiscal year budget when they craft the next year’s budget. However, the President’s FY 19 budget would severely affect resources, proposing drastic cuts to programs that serve vulnerable populations, including housing and services resources. It appears that Congress is not going to consider the President’s budget, and is instead crafting their own. The House has started this process already, and the Senate will follow suit, though that may not be soon. It also appears that Congress is looking to hold on moving this work forward until after the August recess, which really means after the November election. This provides a window of opportunity to reach out to the Delegation, urging them to protect funding for housing and services, including Medicaid, for the people about whom you care.
State Legislature Update:
Lydia: The only way the Legislature reconvenes to act on all of those bills on the Table is if Leadership or the Governor calls them back into session. The majority of each of the caucuses would have to vote to reconvene. It appears that Medicaid expansion is the lynchpin. A lawsuit has been filed, so it’s thought that the result of that lawsuit will affect the Legislature reconvening. There are a number of timeframes for the bills left on the Table. June 30th is the big one for rate cuts, as the DSP rate increases would sunset on 6/30, and revert back to the old rates, which would represent an approximate 12% cut compared with today’s rates. During the time since the rate increases went into effect, the State minimum wage has also increased, creating an even greater deficit. If the rates sunset on 6/30 we would be looking at widespread closings.
If the Legislature does not reconvene before the next Legislature convenes, then all of the bills not yet enacted as law (bills on the Table, bills sitting between the two chambers, etc.) will die, and everything has to start from the beginning. LD 967 has been two-years in the making and would revert back to square one if not enacted. Bills pertaining to Children’s Services are stuck in this limbo as well, such as LD 1820 (see information on LD 1820 below). There’s a similar problem with DSP rates in Children’s Services. Section 28 essentially has a waitlist after the waitlist because once a funding offer is made it’s hard to find services. Agencies can’t hire and retain staff because the wages are too low. Provider waitlists have increased dramatically as well. The waitlist for in-home, nonspecialized services is well over 300 people currently. At what point is it not an operable service anymore? For us, that point is June 30th. We continue to be very hopeful that the Legislature will address the unfinished business, because that hope is all we have at this point. Everyone says they’re supportive of these bills, there’s no argument, everyone agrees, and yet there is still inaction.
Bill on the Table that this group has been following include:
- LD 1870, which was originally the bill to move Child Development Services (CDS) from the Department to the schools, passed the education committee with a complete repeal/replace of the text. The bill would now create a stakeholder group to assess CDS. It appears that this bill, if enacted, would halt all of the proposed changes regarding CDS, with the exception of communities that applied for grants for pilot projects, the first two years of which are for research and data collection.
- LD 1820, the bill which would increase the reimbursement rate for Section 28 services, has passed the House and Senate, and is on the Special Appropriations Table (“the Table”) awaiting funding.
- LD 967, the bill which would increase the reimbursement rate for wages for DSPs (currently set to sunset 6/30/18), has passed the House and Senate, and is on the Table awaiting funding.
- LD 1676, which would create a Death and Serious Injury Review Panel, had a divided report out of the Health and Human Services Committee; and
- LD 1709, which would give the Maine Developmental Services Oversight and Advisory Board (MDSOAB) access to reports, to which it is already supposed to have access per existing statute, passed the House and Senate and is currently on the Table.
-A parent stated that she contacted her local Legislator, who replied that this bill should’ve received its full two-year funding in the previous legislative session. He advocated writing House majority leadership, asking why it never came off the Table in January, when they Legislature convened for the second session.
Peter Stuckey: When you call your Legislator and he tells you to call his leader, that’s a problem. The people who we elect need to lead. Everyone in that Legislature is a leader. When you call them up they ought to be doing that; they represent you.
Lydia: Maybe you have a suggestion, because one of the things I struggle with is getting them refocused on this. Getting them to act as a Legislature, and to realize that it’s unhelpful to play the blame game. How do we get the Legislature to work unitedly?
Peter: The leaders try very hard to juggle numerous issues and priorities. If we have people in the Legislature, but not necessarily in leadership, it’s important that they hear from us that we need them to carry the water, they need to be talking to their leaders, and figuring out how to get themselves into their offices with these messages. It needs to be consistent, and there needs to be a few people who are birddogging leadership with the issues we feel are important. The leaders have so much pressure from not only their colleagues, but from lobbyists, their parties, and all kinds of places, that finding people who will find an inside path to leadership is really the key. It doesn’t have to be 40 legislators, it needs to be maybe three of the right people who are ready to fight and won’t let it go. And, that’s a challenge. Someone other than the constituents need to be there fighting this fight too.
-It was asked if a good strategy might be to contact legislators and urge them to ask leadership to call a Special Session.
Peter: Yes, and as far as leadership, the Speaker in the House and the Senate President have the authority to call a Special Session. (Per the Maine Constitution a special session can be convened by the President of the Senate and Speaker of the House, with the consent of a majority of legislators from each political party.)
-A parent stated that it seems like putting a face to the name has a dramatic affect. When she testified at a Public Hearing, it appears Committee members didn’t truly understand the gravity of what was at stake, and the personal, visual touches were extremely helpful. It was suggested that an effective advocacy strategy could be having a collection of pictures of the people who will be affected by the Legislature’s inaction, and disseminate it before the DSP rates sunset on 6/30. This would humanize the effect of their work, or lack thereof.
Lydia: I think that’s incredibly important. I think it’s also important to not allow the Legislature to bifurcate itself. If one side fails, they all fail. Everyone collectively failed together; and if this succeeds everyone will collectively succeed together.
-It was stated that when letters to leadership are sent, it would be advantageous to cc your local legislators.
Cullen: We can create and disseminate a simple template to use when contacting Legislative Leadership.
-It was stated that among the unfinished business in the Legislature is education funding. It was suggested that the Legislature will not be able to avoid convening because this will have to be addressed prior to the start of the next Legislature, likely before the start of the next school year. It was also noted that convening a Special Session doesn’t ensure everything left unfinished will be addressed; there will be an agenda to which they will adhere. It would be advantageous to request that the bills you care about are funded off the Table in a Special Session.
Lydia: I’m not as confident that the education funding piece will compel them to convene. Any deficit in education funding can be carried until it’s eventually funded. We feel confident that if the Legislature reconvenes, there’s no real hurdle in getting those bills passed. The issue is that they won’t come back until there’s a deal in place. I would encourage anyone who hasn’t listened to the Maine Calling segment on this to do so. (Click here for the Maine Calling program).
-It was stated that this Maine Calling piece was eye-opening; it felt like these bills are being held hostage, which is frightening.
Featured Speaker: Ricker Hamilton, Commissioner, DHHS, www.maine.gov/dhhs. Topic: Services for people with ID/DD.
Cullen: Ricker, I want to thank you very much for making the time to be here today. We’re thrilled to have you!
(Participants introduced themselves.)
Cullen: Thank you again for being here. As you know this group has been in existence since 2006. A lot of what we do involves pulling everyone together, in one place, to talk about people with ID/DD, and to determine the ways in which we can make the world better for them. The Coalition also acts as an information clearinghouse. Having the Department around the table is key. I know we gave you some questions in advance to start the dialogue. Folks here are happy to have an interactive dialogue with you at any time. My son and others would not be receiving an adequate level of care but for the expansion of Section 29. The expansion of Section 29 services and the doubling of the cap are initiatives that you personally, and the Department, fully supported, for which we are grateful. Those ideas, the ways in which Section 29 could be transformed to better serve people with ID/DD, started with this group. The Coalition put these ideas forth, the Department enthusiastically agreed, and worked diligently to see that these improvements were implemented. This is a great example of the ways in which we have worked together to change the system of care for people with ID/DD by cultivating a collaborative partnership, and having a consistent, open, interactive dialogue.
Commissioner Hamilton: Thank you very much, I’m happy to be here. It’s great to see so many familiar faces. I look forward to continuing the dialogue. The system works better when there’s collaboration and trust. The waitlist has been a top priority of the administration for seven years; perhaps your voices could assist in helping that come to fruition.
[Commissioner Hamilton read through the list of questions previously submitted to him, and responded. The questions are italicized and underlined below, with his response immediately following each question. Instances in which members of the group provided additional information/more context for the question are in parentheses].
- How can the Coalition be a useful resource for the Department? A lot of the questions are about collaboration. The Department is always open to collaboration and an open dialogue. We are always open to speaking and meeting with you. This is why we have Constituent Services. If you have questions, or if someone is telling you something about the Department, I would encourage you to have direct communication with us. We have a lot of constituent requests. If it’s something specific, something about the system, get ahold of us directly and we’ll tell you exactly what’s happening, and not allow others to give you the information that you need and deserve.
- How can we get a regular, consistent opportunity to have a conversation and interactive dialogue with the Department? The relationship with the Coalition has become dysfunctional for various reasons. Let’s be positive and look forward, but that’s what has happened. We know that the only way the system changes is you tell us what needs to be done, we look at it, and move it forward. I hope I never see another press conference again. Constant finger-pointing and blaming does not build trust. We’re here today to reenergize the collaboration and ask you to speak to us directly. Our sole motivation is to make the system better – it’s what drives us every day. My question to you is, is that yours?
- Parents, providers, and individuals get a lot out of the collaborative information sharing at Coalition meetings; how can we better include the Department in that process? How many have you contacted and have had direct communication with the Department? How many of you found it to be constructive? If you’ve called someone within the Department and your question hasn’t been answered, move it to the next level. It may not be the answer you want, due to statutory or funding limitations, but then you’ll know what the reasons are and can advocate accordingly. You deserve an unfiltered response. If you have a question, contact us directly. If you’re confused by the answer, or don’t like it, ask again. If this still isn’t satisfactory, then contact my office. We’re there to serve you. That way we can track constituent questions, which allows us to see if there are trends. Previously, we would have officers responding directly to questions; now we prefer that they go through Constituent Services. Constituent Services provides a one-stop-shopping approach – you’re talking to one unit. We found that people were calling five to six times and still not getting the answer they needed and deserved. Constituent Services has helped with this.
- The Section 28 waitlist is currently inaccessible, and has been for the past month and a half. There’s already a huge deficit in the ability to provide Section 28 services; this has halted an already difficult process. Any information at all would be helpful. We were concerned that describing a particular situation and disability would allow for the individual to be identified, so we pulled that report. In what ways did that information help inform you? How can we help fill that?
- Does the Department have any ideas as to how we can address affordable housing, and how the system of care can follow that housing? It there’s ever been a strong suit for this group it’s housing. The Department can’t do everything, and we rely on the experts to do what we can’t. This is the group that could help inform the Department about how it can play a role. There are so many out of the box, creative solutions with housing – look at some of the CHOM housing projects, and the E Street housing. Some people may need group homes, but many need something more home-like, and that’s where I look to this group for information.
- Is there a way in which the system can be oriented so people can chose housing and then wrap services around them? We’re doing a lot of that in Section 21 and 29. That’s what we want. That’s the idea of these community-based waivers. The more ideas you have, we’re all ears.
- Can we collaboratively work on transportation alternatives so that it can be accessed safely, effectively, and efficiently? That’s one of the big issues that OADS and OMS (Office of MaineCare Services) is addressing every day. We’re working with our providers. Transportation, like housing, is another area where we need to work together. I hear from SUFU (Speaking Up For Us) that they’re having issues with transportation – they want to have transportation to the places they want to go to, like any one of us would. They’re being told no, or that there are mileage caps. That’s wrong. That’s an area in which this group could play an active role in gathering information. We’re looking at this all the time. One of the things you may not know is that we’re one of the most flexible departments. As an example, for opioid health homes, which were created with evidence-based best practices, we worked with providers and saw that it was slow in picking up. We looked at the rates and the model, and spoke with some of the providers the more rural areas and discovered that the rate’s not going to work there. They identified four or five areas on which to work with us. In doing this, the number of opioid health homes quadrupled, and more are coming. We are flexible. If something is not right in the system, we’ll change it within our ability. Don’t think that we’re inflexible and set in our ways. We do the very best we can. We may miss something – that’s where direct communication is very helpful.
- How could families and providers be more effective partners with the Department? The same as with question number two, through direct communication. I can’t tell you the number of times parents have contacted me saying “my child is on the waitlist what am I going to do?” We deal with specific cases all the time, and we say what we can and can’t do. Have direct communication with us. And don’t take my word for this, if you’re not getting the answer you think you deserve, keep pushing.
- Can you talk about some ways in which the Department is or is looking to measure service effectiveness? We’re looking a lot at employment. We’re hearing how important a job is towards a person’s quality of life. When we begin to think that a group of people can’t perform to a certain level, we think less of them then we do for our own family. When I’m asked, I give the same answer I would as a parent, for my son Sam, I want him to flourish in the community and succeed. That’s what we’re trying to do with employment – it’s a quality of life measure. As a parent, I’d want to know which agency had the best outcomes. We’re looking at outcome measures, improving accountability, and peer-to-peer comparisons.
- How useful is the National Core Indicator (NCI) data that the state receives, and how does it affect services and service delivery planning? The NCI data is very informative. In the last couple of months interviews have been occurring, and I’ve been getting feedback from both the member and agency perspectives. This provides an opportunity for us to compare ourselves to other states. We want Maine to be a leader. We want costs to be about in the middle due to size and population, but cost shouldn’t affect quality.
- Is the Department aware that police intervention is being used as a method to resolve individual problems, specifically in group homes? I want to know right away how police are being used, and look into it because that’s very concerning. (The individual who asked the original question stated that the staff at the home said this method is part of policy, and that the police have conveyed police intervention appears to be inappropriate for the circumstances.) I would definitely want to look into that, as there are ways to deescalate situations.
- Do you think that the recommendation from the OIG report to have a stakeholder group is a good idea? This was not a formal recommendation of the OIG report. We’ve been very transparent about the report. I provided two letters in response to the original OIG report; I wrote them in the way that answered the questions. The third report was written a little differently. It really is about “what are we going to do?” There’s no defensiveness. If you’d like a copy, I can get you an electronic copy. CMS (Centers for Medicare and Medicaid Services) is most interested in how we’re going to hold agencies accountable. Over half of the report was about agencies not reporting reportable events. We’re having follow-up calls and meetings. The OIG report talks about the system. And all of us together can inform the system. That’s one area in which the relationship between the Coalition and the Department became uncomfortable. Communication with us directly works well. We did such a great job with deinstitutionalization. We’ve got to have the waitlist eliminated. We can’t be the only people talking about having the waitlist eliminated. A lot of the money went other places instead of funding the waitlist. None of your children, your loved ones, should be waiting for a single service. If they have a disability that qualifies them, they should have the services coming when they exit Children’s Services. They are the most vulnerable people we serve. We were the only ones advocating funding the waitlist – some agencies even spoke to it not being necessary.
- People with ID/DD have cognitive challenges that make it even more difficult to comprehend complex documents; have you thought about putting your documents into plain-language so that they are more accessible for individuals for whom services are designed and created? I couldn’t agree with you more. Show us examples of documents that need to be in plain language. We must do that; there’s no downside. Any suggestions are welcome; we’re all in.
- Does the Department have upcoming trainings for parents and individuals receiving services? What questions do you have for us? A lot of trainings are conducted through case managers. You should be utilizing case managers as a resource, to give you the lay of the land. As far as overall trainings, let us know what you need. It may be something that providers ought to give. Just like with housing, it’s a collaboration, we can’t be all things to all people. There may be other entities, like the Muskie School, that could do better than us. What are the specific training needs? Time and time again people will say that their case manager said call the Department and complain about needing services. Case managers should know there’s a waitlist. If trainings and communication can help, the Department is all about that.
- We know a lot of work has been done with the DOE, OCFS, and OADS, regarding transition; what work is presently being done on this? This is ongoing. We’re trying to identify children coming out of the system to inform us as to what our budget should look like in future years. We’re looking at the number of people, and what disabilities we are seeing. If you have any ideas, please send them to us directly.
- The Coalition created a Blueprint for Effective Transition involving a lengthy, thoughtful process with a comprehensive group of stakeholders. The Department seemed to embrace this document. Can you tell us how the Department is utilizing that document in its planning? It’s part of the process, we reference it.
- We know in the past the Developmental Services Stakeholder Continuum of Care document was something that at one time you found useful. The Department has implemented some significant portions of this. How do you think currently it could be most useful, and what if any challenges to its full implementation exist? This is a great document; I remember when I first saw it. We use this and refer to it all the time. We want to build on natural supports. We welcome support and continued discussion about this. What the Department pays for, the members receive.
- How could families more effectively have a voice with the Department, to inform them of current challenges, and what the Department is doing well? This was answered in previous questions – direct communication with us.
- Could the Department provide the following information, on a regular basis (monthly or quarterly as indicated):
- Waitlist numbers on a monthly basis – The total number of people on the Section 21 waitlist, including the breakdown of Priority 1, 2, and 3; and the total number of people on the Section 29 waitlist, if applicable, including the number of people in the queue for Section 29.
- The number of people going on and off the Section 21, Priority 1 on a quarterly basis.
-It was stated that the group can be a voice with him.
Cullen: I’ve spent a lot of time in front of the Legislature speaking about the waitlists, and this group is well informed so it can advocate with you and speak to the magnitude of the issue. The waitlists are a lot different now than in 2008; they’ve grown significantly.
Commissioner Hamilton: Lobbying groups for agencies said funding the waitlists wasn’t necessary. (The group appeared perplexed). Is this your first time hearing that? That’s why you need unfiltered communication with the Department. I couldn’t understand why we were the only ones talking about it. I was perplexed as to why an agency, saying it needed more money to provide the service, was saying “no, we don’t need to fund the waitlist.” Then, when the session was over, within minutes we had phone calls from concerned parents and family members. How can we best reach out to those parents and family members?
-It was stated that currently there are providers who have empty beds and can’t fill them because they can’t pay their staff enough money. It was stated that this is one of many reasons why having waitlist information is helpful. This is an ongoing problem, and the rates are also not sufficient.
Commissioner Hamilton: I’m as frustrated as anyone about the Legislature not completing its job. The rates were not the issue previously. We have a lot of offers out there now. I was the lone voice back in November about the minimum wage increase and the unintended consequences it would have. The other issue is hiring people. I sit on the Workforce Board. They’re saying “give me someone who will show up, I will train them.” That’s why we talk about incentivizing work. There’s more jobs than people to fill them. I’m right there with you.
Cullen: There was one question about the Person-Centered Planning (PCP) process that you didn’t address:
The Person-Centered Planning (PCP) process used to be much more thoughtful and inclusive. Did the Department used to organize the PCP meetings? How can we work together to get back to how the PCP used to work?
Commissioner Hamilton: That question wasn’t included on the list I received. How has the PCP process changed?
-It was stated that its inclusion in EIS has caused various changes, including character limits and goal limits, and it’s now more tied to service delivery. The PCP’s inclusion in EIS has been problematic since its inception, approximately four years ago.
Commissioner Hamilton: This is the first I’m hearing of this. If there’s an issue we ought to be talking about a solution to that issue. I will look into that. Send me the specifics, and we’ll look into this.
-It was stated the PCP requires numerous justifications, to the point that it’s no longer truly about who the individual is as a person; it comes down to every little service being provided. Due to this and the character/goal limits, it’s very piecemealed in order to meet the bare minimum required for medical necessity. And, often times this is still not sufficient.
Commissioner Hamilton: Maybe it would help if a couple of us got together to go over this. I want a better idea of the issue. I have no idea if increasing the character limit is a simple fix, but if it is then let’s do it. If it’s not a simple fix, now’s the time to know.
Cullen: Thank you for taking the time to answer our questions, and for the transparency that represents. I’m happy to make changes if there is anything I can do to help things work better here at the Coalition. What I hear from you is that we haven’t done enough in terms of pushing to get the waitlists funded. We are well-poised to advocate for fully funding the waitlists alongside you and the Department, and will continue to do so.
-It was stated that more than simply funding the waitlists, we ought to be looking at the styles and methods of service delivery within the system. Instead of looking at numbers, looking at quality and how much independence and self-direction people have in terms of their funding and services. It was stated that we ought to be looking to see if there are other, better ways as well.
Commissioner Hamilton: I think your comment speaks to the future. What’s best for people with ID/DD? Is there a happy medium? Those are the kinds of discussions that are really productive to have. Most of my career was in elder abuse. Maine providers, Maine families, Maine people – they have been extraordinary. There are better solutions for us. You work 24-hour days in your own home to provide care. I’m hoping there’s a new beginning here. The door is open, we want to work together. I watch what people do, not what they say. We have to have trust in one another. We can communicate and collaborate, but what you say and do in the public will send a clear message regarding how open the Coalition is to us. Like the spreading of misinformation in the media. This Coalition will disagree with us from time to time, that’s how it works, but we ought to be working collaboratively.
-It was asked how to move forward the concepts of improving communications and social work values in a department as large and as complex as DHHS.
Commissioner Hamilton: All anyone can do is the very best they can. I’ve been blessed with some very great people. We want input. We respond to every question. It can be overwhelming, but they do it because that’s what we need to do. We thought we have it right with opioid health homes, because it was evidenced-based, but we only had it nearly right. “Is this in the best interest of the person we serve?” – the further away we get from that, the more down the rabbit hole we go. Is this the right thing to do? If so, then put your head down and do it.
-It was stated that encouragement and communication can be very difficult sometimes, and sometimes messages can give the perception of nonsupport, when that wasn’t the intention. This will happen from time to time.
Commissioner Hamilton: What’s been very hurtful is to have someone say that I can release information at the highest level, knowing that’s not true. If you don’t hear something from the Department, or from me, there might be legal reasons why. Your connection to the Department exists, regardless of what’s going on.
-It was stated that his compassion and his desire to connect is evident, and apologies were given if there’s been any hard feelings. There’s a lot of moving parts. It was asked if this Coalition could meet with him, provide a list of questions, and have a conversation. A parent stated that this is all about real life, what’s happening to parents right now.
Commissioner Hamilton: Let’s start with submitting questions in writing. We would love to meet with parents. If there’s a parents group, that consists of parents, I would love to talk about that.
-It was asked what the reimbursement rates should be.
Commissioner Hamilton: All I’ll say is ask the legislators to finish their job.
Cullen: It’s really great to have you here; thank you Ricker. As a parent who has a lot of contact with other parents, nothing is more frightening than not knowing what’s going to happen. When we as parents die, we hand the keys over to DHHS to do the driving, and that’s a big deal. We need to have you here to know you’re still working with us and engaging us to get the work done that we as parents can’t do. We’re all in this together. Direct communication is the antidote to everything. The Department has worked very hard to move away from a one-size fits all model. That’s very commendable. I hope you’ll come back to a future meeting.
Commissioner Hamilton: What you just said hits home, because I’m a parent. DHHS doesn’t provide direct services, we contract with agencies who provide services. Absolutely it’s incumbent upon us. You’re handing the person over to a system that includes the Department.
Cullen: That’s why we try to have everyone at the table, because it is a system, and we’re all better for working together towards the same end. Thank you very much, again, for being here. (Large round of applause.)
Handouts/announcements:
- A parent is currently seeking a roommate for his son. Click here for more information on this potential roommate opportunity.
- Click here for the flyer for the Information Session about the houses on E Street, South Portland, occurring on 5/31 at 6pm.
The next meeting will be on June 11, 2018
Featured Speakers: Carol A. Snyder, Maine Field Human Resources Manager, and Amy Wilson, Facility Manager, LogistiCare. Topic: LogistiCare 101 – The latest on this important transportation service.
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).