May 9, 2022
Minutes
Minutes
Attendees via Zoom: Abby Stivers, Alli Vercoe, Bonnie Robinson, Bryan Gordon, Debbie Dionne, Dee Karnofsky, Elisha Cicio, Helen Hemminger, Betsy Hopkins, Jamie Whitehouse, Jennifer Putnam, Kim Humphrey, Laura Cordes, Linda Lee, LyAnn Grogan, Margaret Cardoza, Maria Cameron, Mary Chris Semrow, Michaela York, Nancy Peavey, Paula Bush, Rich Chammings, Robin Levesque, Sally Mileson, Shelley Zielinski, Sarah Robinson, Staci Converse, Teague Morris, Teresa Barrows, Titus O’Rourke, Ryan Jackson, Laurie Cavanaugh, Libby-Stone Sterling, Brenda Smith, Ray Nagel, Nancy Cronin, Rachel Dyer, Jodi Benvie, Joyce Daggett, Darla Chafin, Janet Dibiase, Vickey Rand, Cullen Ryan, and a few people who joined the meeting in progress and/or left prior to its conclusion.
Cullen Ryan introduced himself and welcomed the group. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP). meacsp.org. Topic: Second Regular Session of the 130th Legislature Wrap Up.
Cullen: Today I’m pleased to welcome Laura Cordes, Executive Director of MACSP who will be presenting a wrap up of the Second Regular Session of the 130th Legislature. Thank you for being here today, Laura, and for all your work during the Legislative Session!
Laura Cordes: Thank you Cullen. It’s good to be with you all. I’ve had a chance to talk about some of these bills throughout the session with folks. I’ve done my best to capture some of the bills that we’ve discussed as a group along the way. We had created a document early on that we’ve reviewed in various meetings that I’ll reference, and I’ve continued to update. (Click here for the Google Doc for the 2nd Session of the 130th Legislature.) There were carry-over bills, new bills, and of course the Supplemental Budget. The Legislature is meeting today to consider Governor vetoes and very well may adjourn sine die today.
Begin Presentation (Click here for the presentation which includes in depth information about the Supplemental Budget and various bills of interest):
Cullen: I know that people have had many conversations with Legislators throughout the Session and the lack of bills funded in the Appropriations and Financial Affairs Committee was very disappointing. What can we as a group do to move these important initiatives forward?
Laura: We’ve lost 30% of our workforce which has impacted people’s lives and has also led to a collapse and closure of group homes. This is a service that supports more than 1500 adults and an even larger workforce. The rate increase was a tiny bridge as the Department bridges to a rate study; however, there isn’t a rate study in sight for Section 21. Unfortunately, I don’t have the answer for next steps forward.
-A provider stated that they run group homes and a PNMI. The PNMI is sustainable. However, their Section 21 group home is far more difficult. People have higher behavioral and medical needs, and they don’t have the ability to pay the staff what’s needed to support people well. They’re running their group home at a deficit and closure isn’t out of the question. They want to continue to support people, but they must have the ability financially to do so well.
Laura: Regarding LD 1867 – The Department did a rate setting system evaluation and came back and wanted to create a transparent system so people could understand the process and stakeholders could understand how they fit into the process. This was a collaborative effort among providers, the Department, and Legislators who made a good bill even better. At a future meeting it might be advantageous for the group to dive deeper into this bill as it will help us understand how these rates get set and what the Department wants to see, which is very positive for us. I’ve asked the Department to present on this at a MACSP meeting so we can understand it better as well.
Cullen: Having this be a topic in the future sounds like an excellent idea.
Laura: LD 2003 passed and was signed by the Governor and is being celebrated nationwide for its passage. Cullen likely has more information on the specifics of this bill.
Cullen: This is a bill that was put forth by Speaker Fecteau. Last fall there was a gathering of experts to examine zoning and land use and come up with recommendations on how they could be changed to increase housing and affordable housing development. This bill was the result of those recommendations. There was a lot of various groups that opposed the bill, and as a result the bill was amended numerous times. A final, watered-down version of the bill passed the Legislature. One of the largest things to come from this bill passing is the ability to add an Accessory Dwelling Unit (ADU) to an area with an existing single-family residence. It also changes zoning to allow any area zoned for single-family residences to allow for duplexes. And designated growth areas will be able to have three- to four-unit buildings. This will open the door for additional supportive housing development in Maine. The bill will go into effect 90 days after the legislature adjourns sine die.
-A self-advocate stated that neighbors often complain about homes that serve people with disabilities because they view it as a business. She stated that she has tried to educate people that these are homes they are not businesses. She stated that she would encourage developers to meet with the neighbors as part of the development process to better explain this nuance.
Laura: LD 2039 did not pass. I think everyone is disappointed that nothing came out of the Legislature pertaining to the Department’s intention of transitioning Child Development Services (CDS) to the School Administrative Units (SAUs).
-It was stated that there was a lot of frustration on both sides because so much work went into efforts to move this forward. All the players will keep working on this and hopefully all the work won’t have been for naught.
Nancy Cronin – Maine Developmental Disabilities Council: What was very concerning was the desire not to have a Transition Task Force that would provide opportunities for people to have a voice. There’s a concern that things will move forward regardless of this bill not passing. And there’s further concern that there isn’t a venue for stakeholders to be around the table where these decisions will be made because the meetings are all internal. We must change the system, and we must all have a voice in that systems change. Things are happening they’re just happening without us. The only way to move forward is with all of us included, where all of us can provide our input, and come to compromises that might work. Otherwise, it will be a mess.
Laura: What the Legislature will look like next year remains to be seen. I think though Zoom allowed more participation, a lot got lost not being at the State House in person. Hopefully the Legislature will be in-person next year so there’s more transparency and things go more efficiently and effectively.
-A provider stated that tomorrow is the final hearing for the Transition to Compliance Plan for the HCBS Settings Rule. A letter recently went out from CMS (Centers for Medicare and Medicaid Services) stating that they understand workforce issues exist and that states could modify Transition to Compliance Plans due to this and make an alternate plan for things that involve adequate staffing. He stated that he’s unsure how many people are aware of this but it’s quite important.
Cullen: Thank you again, Laura, for all of this information and for all your hard work and efforts to keep us undated!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speakers: A group discussion introduced by Cullen Ryan, parent, and Dee Karnofsky, parent. Topic: The power to do nothing - the dark side of never doing anything you don’t want to do. This will be a discussion regarding how people can benefit from nudges from direct support staff, family members, and other members of the community encouraging better decision-making, including using the concept of dignity of risk, so everyone has the opportunity to live healthy, full lives and be included in their communities.
Cullen: I’m thrilled to be joined by Dee Karnofsky to begin this group discussion, which will focus on how people can benefit from nudges from direct support staff, family members, and other members of the community encouraging good decision-making, helping people follow through with their motivations and desires even if they might be fearful of doing so, to ensure that everyone has the opportunity to live healthy, full lives and be included in their communities. This will be a free-form discussion. I know from my own experience and through what I’ve witnessed other parents experience, people are often better for those small nudges. We can have a system that empowers people and respects their rights and freedoms, while also encouraging people to make good choices and holding them accountable through our relationships so that they can do all of the things that they want to do and feel empowered to do so. I’ll turn it over to Dee, who might be able to illustrate this far better than I.
(Dee’s audio wasn’t working so Cullen provided an overview of what Dee shared with him).
Cullen: When I asked Dee how her son was doing, she said “he’s doing well and I’m happy to have him housed. However, he’s not doing well in some ways.” She was hoping he’d do more. His staff seemed to think if he says he doesn’t want to do something, that’s as far as it goes. She’s watched her son make some very unhealthy choices – sitting around and eating unhealthily versus making more healthy choices and engaging in activities he used to enjoy. In the many years while her son was at home she could nudge and encourage him to make good choices. She struggled with the idea that his staff feels like they don’t have the ability to do that due to the need to respect his personal choices.
(Later in the meeting Dee’s audio began functioning and she was able to tell her story)
Dee Karnofsky: I have a 29-year-old son. I’m his guardian. He lives in a PNMI. The Manager of the house got in touch with Disability Rights Maine. Through this I found out I couldn’t control or help manage his finances or what he does with the money I give him for food. I couldn’t control or help manage his computer use – even though his councilor has stated how detrimental it would be for him to have constant access to his computer. Now, it’s difficult to get him off of the computer. The unintended consequence to him being empowered is that he’s learned he can say no to anything and it’s crossing over into his quality of life. His employment coach has said he’s being more oppositional and is at risk of losing his job. Consequences don’t seem to make a difference to him. All of his money is going to apps and games. What was supposed to empower him has made him more unstable because without routine he’s become more anxious. He even says things to me, like “I can’t sleep anymore because I can’t stop using the computer.” However, when you offer a solution, he says no. I just don’t know what to do.
Discussion: There was very lengthy discussion from various points of view. The overarching themes of the discussion are summarized below:
Dee: What happens when what’s happening has turned into an addiction? I’ve heard from staff that my son’s behavior has changed completely. He’s not doing things he used to. He’s telling me he can’t turn off his computer. His job is saying he’ll get fired if he doesn’t perform. He doesn’t really understand the true reality of the consequences. I also know that I have been overbearing, and I’m working very hard to step back and acknowledge that there are some things I need to let go of as well.
Cullen: This is all very complex. The DSM (Diagnostic and Statistical Manual) definition of addiction is when a pattern of behavior negatively affects aspects of one’s life such as relationships, work, etc. So, you’ve brought up another potential challenge; it is possible that there may be addiction involved.
This was a great conversation and I appreciate the thoughtful, respectful, important dialogue. I hope this conversation continues so that we can continue to talk about these different complexities and can work to get this right. Thank you, Dee for your willingness to share your story, and thank you to everyone for engaging in such an important discussion!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: I wanted to say that from our view the Biennial Budget represented huge progress in funding for ID/DD. In many people’s view it wasn’t enough. I wanted to share a few highlights from the budget. The increased support for ID/DD services is unprecedented.
-In Section 21 alone, PERMANENT rate increases of $115 million over the current biennium.
-In addition, agency home support providers will receive a one-time supplemental payment of $6 million, pending CMS approval (expected this summer).
-In addition, agencies subject to the HCBS settings rule will receive $5 million in one-time remediation payments.
Public Comments: The Department welcomes public comments on Maine’s Final HCBS Statewide Transition Plan. The Public Comment deadline is May 20, 2022 by 11:59 p.m. Comments may be submitted:
-A provider asked if OADS and OMS (Office of MaineCare Services) are discussing the letter regarding the refuge for providers in implementing the full HCBS Settings Rule, looking at areas of the Settings Rules that are really too difficult to implement due to poor staffing.
Betsy: I’m not familiar with that letter and I’m not part of any discussions regarding that. If you’d like to send me a copy of that letter, I’d be happy to look it over.
Cullen: Thank you very much again, Betsy!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows had to leave the meeting early but provided the following update: We are moving forward with your transition work with Betsy that we presented, and this is very exciting!
DOL – Division of Vocational Rehabilitation - www.maine.gov/rehab/dvr
Libby Stone-Sterling: I’ll provide a couple of quick updates. Last week we started having OADS staff co-located in a couple of our offices. We’re looking forward to that as another way to build capacity across our systems.
Special Education
Titus O’Rourke: Last week we were asked to present on transition in conjunction with the National Technical Assistance Center. Maine was identified as one of the few states conducting student-led transition planning. The presentation was conducted by a student, which was wonderful, and highlights Maine’s commitment to have transition planning focused on the student, for the student, and with the student. Additionally, School Administrative Units will be holding office hours beginning on 5/11, which will be held weekly for the rest of the school year and will begin again at the beginning of the next school year.
SMACT (Southern Maine Advisory Council on Transition):
Nancy Peavy: The SMACT website and the Coalition website are cross-linked for convenience and information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy ([email protected]). The May meeting, that last until October, was on Friday, 5/6 and featured a very informative presentation by the Office of Aging and Disability Services. The presenters included Pete Auger, Regional Supervisor York/Cumberland County Office of Aging and Disability Services; Mariah Hadyniak, Intake Coordinator for York County; and Vanessa Clements, Intake Coordinator for Cumberland County. They provided updated information about the referral process and services provided by OADS. Next year SMACT meetings will be held quarterly, beginning on the first Friday of October. We will try to make them as information dense as possible since they won’t be held every month. Our first presenter will be Diane Luce with the MMC Benefits Counseling Program discussing work incentives and addressing confusion regarding how work affects benefits.
Disability Rights Maine (DRM) Update:
Staci Converse: I wanted to add that we regularly provide rights trainings. These trainings are a good way to learn about people’s rights, and it can be much more of a conversation about why rights exist, etc. These provide good opportunities to have the types of conversation we had today.
LD 924 Task Force Update:
Linda Lee: The LD 924 Task Force was created because of people falling off of the cliff. We keep running up against that cliff of no services, and there’s no one at the bottom of that cliff there to see what happens when they do. There’s a complete lack of data around that, which is an obstacle the group continues to face.
Federal & Housing Updates:
Cullen:
State Legislature Update: No additional updates.
Other Business: None.
The next meeting will be on Monday, June 13, 2022, 12-2pm, via Zoom*.
Featured Speakers and Topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2022 the October meeting will be the 3rd Monday due to the holiday)
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. Minutes from the last meeting were accepted. For the sake of time, Cullen read the names of participants.
Featured Speaker: Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP). meacsp.org. Topic: Second Regular Session of the 130th Legislature Wrap Up.
Cullen: Today I’m pleased to welcome Laura Cordes, Executive Director of MACSP who will be presenting a wrap up of the Second Regular Session of the 130th Legislature. Thank you for being here today, Laura, and for all your work during the Legislative Session!
Laura Cordes: Thank you Cullen. It’s good to be with you all. I’ve had a chance to talk about some of these bills throughout the session with folks. I’ve done my best to capture some of the bills that we’ve discussed as a group along the way. We had created a document early on that we’ve reviewed in various meetings that I’ll reference, and I’ve continued to update. (Click here for the Google Doc for the 2nd Session of the 130th Legislature.) There were carry-over bills, new bills, and of course the Supplemental Budget. The Legislature is meeting today to consider Governor vetoes and very well may adjourn sine die today.
Begin Presentation (Click here for the presentation which includes in depth information about the Supplemental Budget and various bills of interest):
Cullen: I know that people have had many conversations with Legislators throughout the Session and the lack of bills funded in the Appropriations and Financial Affairs Committee was very disappointing. What can we as a group do to move these important initiatives forward?
Laura: We’ve lost 30% of our workforce which has impacted people’s lives and has also led to a collapse and closure of group homes. This is a service that supports more than 1500 adults and an even larger workforce. The rate increase was a tiny bridge as the Department bridges to a rate study; however, there isn’t a rate study in sight for Section 21. Unfortunately, I don’t have the answer for next steps forward.
-A provider stated that they run group homes and a PNMI. The PNMI is sustainable. However, their Section 21 group home is far more difficult. People have higher behavioral and medical needs, and they don’t have the ability to pay the staff what’s needed to support people well. They’re running their group home at a deficit and closure isn’t out of the question. They want to continue to support people, but they must have the ability financially to do so well.
Laura: Regarding LD 1867 – The Department did a rate setting system evaluation and came back and wanted to create a transparent system so people could understand the process and stakeholders could understand how they fit into the process. This was a collaborative effort among providers, the Department, and Legislators who made a good bill even better. At a future meeting it might be advantageous for the group to dive deeper into this bill as it will help us understand how these rates get set and what the Department wants to see, which is very positive for us. I’ve asked the Department to present on this at a MACSP meeting so we can understand it better as well.
Cullen: Having this be a topic in the future sounds like an excellent idea.
Laura: LD 2003 passed and was signed by the Governor and is being celebrated nationwide for its passage. Cullen likely has more information on the specifics of this bill.
Cullen: This is a bill that was put forth by Speaker Fecteau. Last fall there was a gathering of experts to examine zoning and land use and come up with recommendations on how they could be changed to increase housing and affordable housing development. This bill was the result of those recommendations. There was a lot of various groups that opposed the bill, and as a result the bill was amended numerous times. A final, watered-down version of the bill passed the Legislature. One of the largest things to come from this bill passing is the ability to add an Accessory Dwelling Unit (ADU) to an area with an existing single-family residence. It also changes zoning to allow any area zoned for single-family residences to allow for duplexes. And designated growth areas will be able to have three- to four-unit buildings. This will open the door for additional supportive housing development in Maine. The bill will go into effect 90 days after the legislature adjourns sine die.
-A self-advocate stated that neighbors often complain about homes that serve people with disabilities because they view it as a business. She stated that she has tried to educate people that these are homes they are not businesses. She stated that she would encourage developers to meet with the neighbors as part of the development process to better explain this nuance.
Laura: LD 2039 did not pass. I think everyone is disappointed that nothing came out of the Legislature pertaining to the Department’s intention of transitioning Child Development Services (CDS) to the School Administrative Units (SAUs).
- Background on LD 2039: Two bills that passed last year (LD 255 An Act To Ensure Student Success that directs the Department of Education to develop a plan for early intervention services through a quasi-independent government agency structure, with the Department of Education providing oversight; and LD 386 An Act To Improve Operations at the Department of Education that ended up in a 'Resolve, Directing the Department of Education To Establish the Process for Transitioning the Provision of Early Childhood Special Education Services for Children with Disabilities from 4 Years of Age to under 6 Years of Age from the Regional Child Development Services System to School Administrative Units') directed DOE to form a stakeholder group report back to the Education Committee this year regarding recommendations for delivering early intervention and preschool special education services. The Education Committee subsequently worked on draft legislation to address this. However, multiple concerns have been raised by advocates regarding the plan transition CDS services to the SAUs – specifically that the plan did not address all of the recommendations the stakeholder group made, that it appeared to be incomplete, lacked sufficient detail, and didn’t include a funding mechanism to implement what was being proposed. The Education Committee was divided on the bill, and the House and Senate could not come to consensus, with the House voting on Report B, which was that the bill Ought Not to Pass (ONTP), and the Senate voting on Report C Ought to Pass As Amended (OTP-AM). With the two chambers being in nonconcurrence the bill died.
-It was stated that there was a lot of frustration on both sides because so much work went into efforts to move this forward. All the players will keep working on this and hopefully all the work won’t have been for naught.
Nancy Cronin – Maine Developmental Disabilities Council: What was very concerning was the desire not to have a Transition Task Force that would provide opportunities for people to have a voice. There’s a concern that things will move forward regardless of this bill not passing. And there’s further concern that there isn’t a venue for stakeholders to be around the table where these decisions will be made because the meetings are all internal. We must change the system, and we must all have a voice in that systems change. Things are happening they’re just happening without us. The only way to move forward is with all of us included, where all of us can provide our input, and come to compromises that might work. Otherwise, it will be a mess.
Laura: What the Legislature will look like next year remains to be seen. I think though Zoom allowed more participation, a lot got lost not being at the State House in person. Hopefully the Legislature will be in-person next year so there’s more transparency and things go more efficiently and effectively.
-A provider stated that tomorrow is the final hearing for the Transition to Compliance Plan for the HCBS Settings Rule. A letter recently went out from CMS (Centers for Medicare and Medicaid Services) stating that they understand workforce issues exist and that states could modify Transition to Compliance Plans due to this and make an alternate plan for things that involve adequate staffing. He stated that he’s unsure how many people are aware of this but it’s quite important.
Cullen: Thank you again, Laura, for all of this information and for all your hard work and efforts to keep us undated!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
Featured Speakers: A group discussion introduced by Cullen Ryan, parent, and Dee Karnofsky, parent. Topic: The power to do nothing - the dark side of never doing anything you don’t want to do. This will be a discussion regarding how people can benefit from nudges from direct support staff, family members, and other members of the community encouraging better decision-making, including using the concept of dignity of risk, so everyone has the opportunity to live healthy, full lives and be included in their communities.
Cullen: I’m thrilled to be joined by Dee Karnofsky to begin this group discussion, which will focus on how people can benefit from nudges from direct support staff, family members, and other members of the community encouraging good decision-making, helping people follow through with their motivations and desires even if they might be fearful of doing so, to ensure that everyone has the opportunity to live healthy, full lives and be included in their communities. This will be a free-form discussion. I know from my own experience and through what I’ve witnessed other parents experience, people are often better for those small nudges. We can have a system that empowers people and respects their rights and freedoms, while also encouraging people to make good choices and holding them accountable through our relationships so that they can do all of the things that they want to do and feel empowered to do so. I’ll turn it over to Dee, who might be able to illustrate this far better than I.
(Dee’s audio wasn’t working so Cullen provided an overview of what Dee shared with him).
Cullen: When I asked Dee how her son was doing, she said “he’s doing well and I’m happy to have him housed. However, he’s not doing well in some ways.” She was hoping he’d do more. His staff seemed to think if he says he doesn’t want to do something, that’s as far as it goes. She’s watched her son make some very unhealthy choices – sitting around and eating unhealthily versus making more healthy choices and engaging in activities he used to enjoy. In the many years while her son was at home she could nudge and encourage him to make good choices. She struggled with the idea that his staff feels like they don’t have the ability to do that due to the need to respect his personal choices.
(Later in the meeting Dee’s audio began functioning and she was able to tell her story)
Dee Karnofsky: I have a 29-year-old son. I’m his guardian. He lives in a PNMI. The Manager of the house got in touch with Disability Rights Maine. Through this I found out I couldn’t control or help manage his finances or what he does with the money I give him for food. I couldn’t control or help manage his computer use – even though his councilor has stated how detrimental it would be for him to have constant access to his computer. Now, it’s difficult to get him off of the computer. The unintended consequence to him being empowered is that he’s learned he can say no to anything and it’s crossing over into his quality of life. His employment coach has said he’s being more oppositional and is at risk of losing his job. Consequences don’t seem to make a difference to him. All of his money is going to apps and games. What was supposed to empower him has made him more unstable because without routine he’s become more anxious. He even says things to me, like “I can’t sleep anymore because I can’t stop using the computer.” However, when you offer a solution, he says no. I just don’t know what to do.
Discussion: There was very lengthy discussion from various points of view. The overarching themes of the discussion are summarized below:
- This is an important, complex topic.
- The permission to nudge is appreciated because it’s not always accepted as a positive approach. Many times, when an activity is suggested, people will say no the first time, but after a little nudging they change their mind.
- Sometimes staff hesitate nudging due to concerns about disability rights and accept the first “no” without further discussion. This can cause people to miss out on opportunities. It’s important not to take the first “no” as the final “no”. Continuing to engage in a dialogue around the subject is beneficial and can be done while respecting someone’s rights and in an empowering way.
- People without disabilities benefit from nudging, and people gain a lot of experiences through that. This opportunity ought to be afforded to people with disabilities as well.
- Staff are in a hard predicament with this. It’s far easier for parents to nudge their children than it is for staff to provide that same encouragement.
- It takes creativity and relationship work to know how to help someone achieve what they want while avoiding triggers (certain language, places, topics, etc.) that would put up a hard wall and end the discussion even though it might mean the person misses out on what they really want to do.
- People continue to learn, change, and grow as a person and the system can help people through various changes in life. The word nudge isn’t concerning; however, there’s a fine line between nudging and coercion which is extremely concerning.
- People with disabilities who have paid staff experience different power dynamics. The general premise of this is trying to encourage people to develop, have more control over their lives, and see all of the different possibilities and opportunities.
- Constant staff turnover does not assist with this situation.
- Parents coming together to talk about this with providers would be beneficial.
- From the experience of a self-advocate, it’s quite the debate. Who is right? The parent? The staff? The person themselves? That’s often the conflict, and the person is in the middle of that conflict. There’s also the opposite situation, where a parent might say someone can’t do something, when the staff are saying they can. That again puts the person in the middle of a tough situation and doesn’t get to what the person wants.
- Having parents sit down and come up with things that their kids like, things that are triggers, etc., so that a brand-new staff person working with their kids would have a tool for understanding from which they could build a relationship has proven to be very beneficial.
- Based on the right to positive supports, providers have the responsibility to dig into these things, to ask why people are saying no to begin with. A lot of the “poor choices” people make are coping mechanisms for anxiety, depression, and other mental health-related issues. The focus is often on someone’s developmental/intellectual disability but so many have mental health challenges as well. Knowing what’s a nudge and what goes beyond that is often difficult to determine. There are things that parents can say and do that staff can’t – like taking something away. But there are a million ways that staff can nudge. That can be part of staff training. Part of the concept of positive supports is creating living documents for people – not just people labeled with behavioral challenges. Including someone’s challenges in that document is important. For instance, if someone struggles with cleaning their apartment and doesn’t care what they look or smell like. The next step is then to ask “why?” Based on the answer to that question staff can then develop ways in which they can be supported and empowered.
- There’s a huge difference between having power over someone and empowering people. For parents it’s far easier to simply do things for their children instead of empowering them to do it themselves. However, when this happens, when their child moves into an apartment and are expected to know how to keep it clean etc., they don’t know how and that’s when the “no’s” might start.
- Sometimes even after nudging, and having the consequences fully explained, people still desire to say “no” or continue to make the same choices. It’s difficult because people have the right to make bad decisions – we do it all the time. Having the conversation is really important so that everyone is on the same page.
- Sometimes that nudging happens, but what staff communicate to parents might be “I asked, and he said no.” This is also why communication between staff, providers, and parents is very important.
Dee: What happens when what’s happening has turned into an addiction? I’ve heard from staff that my son’s behavior has changed completely. He’s not doing things he used to. He’s telling me he can’t turn off his computer. His job is saying he’ll get fired if he doesn’t perform. He doesn’t really understand the true reality of the consequences. I also know that I have been overbearing, and I’m working very hard to step back and acknowledge that there are some things I need to let go of as well.
Cullen: This is all very complex. The DSM (Diagnostic and Statistical Manual) definition of addiction is when a pattern of behavior negatively affects aspects of one’s life such as relationships, work, etc. So, you’ve brought up another potential challenge; it is possible that there may be addiction involved.
This was a great conversation and I appreciate the thoughtful, respectful, important dialogue. I hope this conversation continues so that we can continue to talk about these different complexities and can work to get this right. Thank you, Dee for your willingness to share your story, and thank you to everyone for engaging in such an important discussion!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: I wanted to say that from our view the Biennial Budget represented huge progress in funding for ID/DD. In many people’s view it wasn’t enough. I wanted to share a few highlights from the budget. The increased support for ID/DD services is unprecedented.
-In Section 21 alone, PERMANENT rate increases of $115 million over the current biennium.
- Jan 1, 2022, rate increases represent a 16% increase over June 2021.
- When the minimum wage goes up again in January 2023, so will Section 21 rates, and they will be 22% higher than June, 2021.
- These increases include the general rate increase proposed last year by Gov. Mills, plus 125% of minimum wage in Part AAAA, plus an accelerated cost of living adjustment (COLA)
- Providers were notified that they could bill at the new rates starting May 5. They can back bill now to Jan 1 for all except group home rates. Back billing for group home rates can begin on May 20.
- Not included in the $115 million are increases in Section 29. The same rate increases apply for services, such as community support, that are provided in both waivers.
-In addition, agency home support providers will receive a one-time supplemental payment of $6 million, pending CMS approval (expected this summer).
-In addition, agencies subject to the HCBS settings rule will receive $5 million in one-time remediation payments.
- Notice of Final Statewide Transition Plan (STP) for Home and Community-Based Services (HCBS) Settings: Pursuant to 42 CFR 441.301(c)(6), Home and Community-Based Settings: Compliance and Transition, Maine Department of Health and Human Services gives notice that Maine’s Final HCBS Statewide Transition Plan has been released for a 30-day public comment period. The full public notice and revised Maine HCBS Statewide Transition Plan are available online at http://www.maine.gov/dhhs/oms/rules/transition-plan.shtml. Maine’s Final HCBS Statewide Transition Plan will be submitted to CMS in July 2022 and will be effective upon CMS approval. (Click here for more information, including the Department’s Concise Summary and additional links to more information.)
Public Comments: The Department welcomes public comments on Maine’s Final HCBS Statewide Transition Plan. The Public Comment deadline is May 20, 2022 by 11:59 p.m. Comments may be submitted:
- In writing to the agency contact person listed below; or
- OMS rulemaking mailbox; or
- [email protected]
- Meeting on May 17 to Update Stakeholders on Section 9817 HCBS Improvement Plan - 5/17: All interested stakeholders are invited to a meeting with the Maine Department of Health and Human Services on Tuesday, May 17, 2022, from 1:00 – 2:30 pm. As the department proceeds with the Section 9817 Home and Community Based Services (HCBS) Improvement Plan, this meeting is an opportunity to hear about updates to the plan and the Department’s short-term priorities. This meeting will be held on Tuesday, May 17, 2022, from 1:00 – 2:30 pm. Please register in advance by clicking on this link:
https://mainestate.zoom.us/meeting/register/tZYqd--srjMtH9LMK6lK6FePUwKsRiX3QEZM. After registering, you will receive a confirmation email containing information about joining the meeting. - Long-Term Services and Supports and HCBS Rate Increases (Sections 12, 18, 19, 20, 21, 29, and 96 Services: Part AAAA): The Department will update the rates for MaineCare Benefits Manual Sections 12, 18, 19, 20, 21, 29, and 96 associated with Part AAAA of P.L. 2021, Ch. 398 retroactively to January 1, 2022. Please see our previous announcement for more detail on these rate increases, including a summary rate table with specific codes and rates affected by this change. (Click here for more information.)
- Maine DHHS Cultural Competence and Inclusion Webinar: Intellectual & Developmental Disabilities (I/DD) – 5/11 7:30-8:30am: Please register in advance for this Zoom webinar. Disability as a construct has been defined from multiple perspectives. How people with disabilities have been viewed and served throughout Maine and the United States has shifted and changed from living in institutions to living in the community. Many people with I/DD and their families have experienced trauma by the systems that care for them. One way to mitigate the potential for such trauma is to ensure that professionals understand the concepts of civil rights, self-advocacy, and self-determination in relation to disability inequality. Webinar participants will also gain skills to ensure published materials are in plain language and will be introduced to other commonly used communication strategies. (Click here for more information.)
- Introduction to Self-Direction In Section 29 Home and Community Based Services (HCBS) Support Waiver: Please join the Department of Health and Human Services’ Office of Aging and Disability Services (OADS) and Applied Self Direction for an introduction to Self-Direction. We have heard self-advocates and families’ desire for self-determination and change and are introducing the upcoming implementation of Self Direction in Section 29. This service will allow members to manage their own services, decide who to hire and control their schedule for the following services:
- Home Support- Quarter Hour
- 1:1 Community Membership
- Individual Directed Goods and Services
- Assistive Technology Devices
- Assistive Technology- Transmission
- Home Accessibility Adaptations
-A provider asked if OADS and OMS (Office of MaineCare Services) are discussing the letter regarding the refuge for providers in implementing the full HCBS Settings Rule, looking at areas of the Settings Rules that are really too difficult to implement due to poor staffing.
Betsy: I’m not familiar with that letter and I’m not part of any discussions regarding that. If you’d like to send me a copy of that letter, I’d be happy to look it over.
Cullen: Thank you very much again, Betsy!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows had to leave the meeting early but provided the following update: We are moving forward with your transition work with Betsy that we presented, and this is very exciting!
DOL – Division of Vocational Rehabilitation - www.maine.gov/rehab/dvr
Libby Stone-Sterling: I’ll provide a couple of quick updates. Last week we started having OADS staff co-located in a couple of our offices. We’re looking forward to that as another way to build capacity across our systems.
- BRS Stakeholders Forum: We invite you to join leaders from the Maine Department of Labor’s Bureau of Rehabilitation Services to learn about programming and opportunities for individuals with disabilities through the Division of Vocational Rehabilitation and the Division for the Blind and Visually Impaired. We also look forward to your feedback and input as we strive for continuous improvement in service delivery. ASL and CART will be available.
- STEP UP - College Prep Summer Program for youth with ASD: For the 4th year, the Division of Vocational Rehabilitation is pleased to be partnering with the University of Maine to offer STEP UP – a college prep summer program for upper-level high school students with Autism Spectrum Disorders. We are very excited to be back on campus after two summers of offering the program virtually. STEP UP will run from July 11-August 12. This year we are focusing on a STEM (Science, Technology, Engineering and Mathematics) themed program. (Click here for more information.) As a reminder – there is no cost to youth or families to participate.
Special Education
Titus O’Rourke: Last week we were asked to present on transition in conjunction with the National Technical Assistance Center. Maine was identified as one of the few states conducting student-led transition planning. The presentation was conducted by a student, which was wonderful, and highlights Maine’s commitment to have transition planning focused on the student, for the student, and with the student. Additionally, School Administrative Units will be holding office hours beginning on 5/11, which will be held weekly for the rest of the school year and will begin again at the beginning of the next school year.
SMACT (Southern Maine Advisory Council on Transition):
Nancy Peavy: The SMACT website and the Coalition website are cross-linked for convenience and information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy ([email protected]). The May meeting, that last until October, was on Friday, 5/6 and featured a very informative presentation by the Office of Aging and Disability Services. The presenters included Pete Auger, Regional Supervisor York/Cumberland County Office of Aging and Disability Services; Mariah Hadyniak, Intake Coordinator for York County; and Vanessa Clements, Intake Coordinator for Cumberland County. They provided updated information about the referral process and services provided by OADS. Next year SMACT meetings will be held quarterly, beginning on the first Friday of October. We will try to make them as information dense as possible since they won’t be held every month. Our first presenter will be Diane Luce with the MMC Benefits Counseling Program discussing work incentives and addressing confusion regarding how work affects benefits.
Disability Rights Maine (DRM) Update:
Staci Converse: I wanted to add that we regularly provide rights trainings. These trainings are a good way to learn about people’s rights, and it can be much more of a conversation about why rights exist, etc. These provide good opportunities to have the types of conversation we had today.
LD 924 Task Force Update:
Linda Lee: The LD 924 Task Force was created because of people falling off of the cliff. We keep running up against that cliff of no services, and there’s no one at the bottom of that cliff there to see what happens when they do. There’s a complete lack of data around that, which is an obstacle the group continues to face.
Federal & Housing Updates:
Cullen:
- The President’s FY 23 Budget: On 3/24 President Biden released his FY 23 budget, which acts as a blueprint for the Administration’s priorities. His budget calls for a range of policies that would boost opportunity and reduce poverty, improve health and well-being, and advance widely shared prosperity, funded by proposals to make the nation’s tax system stronger and fairer. Rather than laying out specific proposals for that package in its budget, it calls on Congress to craft an economic package that reduces costs for families, tackles climate change, and raises revenues to pay for these investments and shrink the deficit.
- The President’s FY 23 T-HUD Budget: The President’s proposed budget funds HUD programs at $71.9 billion, $6.2 billion more than the final FY 22 level. Specifically, the President’s Budget would provide:
- $32.1 billion for tenant-based Section 8 vouchers, an increase of $6.4 billion (including emergency funding) over the 2021 enacted level, to maintain services for all currently assisted families and to expand assistance to an additional 200,000 households.
- $86 million in grants to support State and local fair housing enforcement organizations and to further education, outreach, and training on rights and responsibilities under Federal fair housing laws.
- $180 million to support 2,000 units of new permanently affordable housing specifically for the elderly and persons with disabilities. To complement these investments, the Budget contains a total of $50 billion in mandatory funding and additional Low-Income Housing Tax Credits to increase affordable housing development.
- National Housing Trust Fund: There are various efforts in Congress to increase the National Housing Trust Fund, including the Homes for All Act which would invest $200 billion over 10 years into the National Housing Trust Fund. And, the Housing for All Act of 2022, which would invest $45 billion into the National Housing Trust Fund. In Maine, resources from the HTF are the primary funding mechanism for supportive housing development.
- SSI savings Penalty Elimination Act: This bipartisan bill, introduced in the Senate by Senator Sherrod Brown and co-sponsored by Senator Rob Portman, would raise the asset limit from $2,000 to $10,000 and tie the limit to inflation. If enacted, this would be the first change to the asset limit rule since 1989.
- Administration Announces Intent to Amend Regulations Implementing Section 504: U.S. Department of Education Announces Intent to Strengthen and Protect Rights for Students with Disabilities by Amending Regulations Implementing Section 504 of the Rehabilitation Act of 1973. The Department's Office for Civil Rights will solicit public comments to help decide how best to improve current regulations to assist America's students with disabilities As part of the development of the proposed amendments to the Section 504 regulations, the Department is soliciting public input. Interested parties may go to www2.ed.gov/policy/rights/reg/ocr/ to submit comments. The Department will also hold listening sessions in the coming months.
State Legislature Update: No additional updates.
Other Business: None.
The next meeting will be on Monday, June 13, 2022, 12-2pm, via Zoom*.
Featured Speakers and Topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(In 2022 the October meeting will be the 3rd Monday due to the holiday)
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].