February 8, 2021
Minutes
Minutes
Attendees via Zoom: Beth Morse, Mark Kemmerle, Margaret Cardoza, Rachel Dyer, Sierra Hillebrand, Sue Wall, Stacy Lamontagne, Monique Stairs, Debbie Dionne, Kathy Leberge, David Cowing, Staci Converse, Geetika Chaudhary, Anne Marie Riley, Elissa Wynne, Janet Hamel, Kristen Fortier, Betsy Hopkins, Melanie Miller, Nancy Peavy, Ray Nagel, Brenda Smith, S Bunnell, Kim Humphrey, Sharlene Adams, Teresa Barrows, Diane Boas, Ed and Suellen Doggett, Bryan Gordon, Sheril Halvorsen, Betsy Mahoney, Alli Vercoe, Darla Chafin, Julie Brennan, Amanda Hodgkins, Beth Mylroie, J Richardson Collins, Paula Bush, Jenny Gage, Laura Cordes, Susan, Maura McDermott, Lily Lin, Helen Hemminger, Vickey Rand, Cullen Ryan, and a few people who joined the meeting in progress and left prior to its conclusion.
Click here for a link to a recording of this meeting
Cullen Ryan introduced himself and welcomed the group. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted.
Featured Speakers: Rachel Dyer, Associate Director, Maine Developmental Disabilities Council (MDDC), www.maineddc.org and Monique Stairs, Executive Director, Speaking Up For Us (SUFU), sufumaine.org. Topic: Person Centered Planning (PCP).
Cullen: Today we have Rachel Dyer, Associate Director of the Maine Developmental Disabilities Council (Maine DDC), and Monique Stairs, Executive Director of Speaking Up For Us (SUFU), presenting on Person Centered Planning (PCP).
Rachel Dyer: We did not prepare a PowerPoint today because it’s hard to have a PowerPoint on the screen and have a conversation with people. I do have some notes on my screen, so please interrupt if you need to. Monique and I are very happy to be here today. I have been working at the MDDC for more than 10 years and I’ve been hearing about the PCP process in adult developmental services the whole time I’ve worked there. Before I worked at MDDC I worked in the field, so I had firsthand experience. We’ve heard about what is working, what isn’t, and what needs to change due to the HCBS Settings Rule. There have been a lot of forums and stakeholder groups pertaining to this. Most of our members have personal experience with the PCP process for adults. Monique and I are going to talk a little bit about what we’ve experienced in our professional roles and facilitate a conversation which will hopefully assist people in their own PCP process. We’re really here because the issues with the PCP process come up frequently when we talk about what needs to happen in the system, and it’s been a long time since we’ve had a conversation around this. We hope to talk a little bit about the history of the PCP process and the context of it, and some of you will know more about this than we do. We hope you’ll find it useful. We really thought about it in terms of coming out at the end sharing what works for you, your family members, and the people you support. We have extensive documentation about what doesn’t work, but our hope is to see what is working, and what will help the system as it is today.
Monique Stairs: I’m interested in that last part too. It’s important to talk about where we’re at now with PCP, and how we can make that process better for people currently. I’m looking forward to hearing others’ experiences as we continue to collect stories folks have had.
Rachel Dyer: I wanted to talk a little bit about the history of PCP. My own introduction to PCP was around 1990 when I was a DSP, and then went on to become a house manager, in a four-bed intermediate care facility (ICF). It was a great time to be doing that work. We didn’t have an ongoing staffing crisis because wages were good, and the agency I worked for was very progressive. As long as you followed the rules you were allowed to try things out. We learned about PCP from Dave Hingsburger. He did a lot of traveling to train people, and we bought some books to research it and try things out. I was blown away by how cool a thing it was. Here was this process developed for people with very significant challenges; it was not lifted from the medical model; it was made for people with little or no social support at all outside of their paid support. It was developed for people who mostly had very unusual and often traumatic life experiences. This process took all the things I had learned about ID/DD and put it all together. It took all of these clinically based things, but then said here is a way to help approach service provision in a way that betters people’s lives – which is the purpose of the whole thing. It’s the whole reason why we have services – to help people live better lives. PCP was developed in the 1970’s, developed to help someone decide what they wanted their life to look like, and what support was needed to get there. It revolutionized the ID/DD world, and was the first model that didn’t highlight people’s deficits. The questions are who are you, what do you dream, and how do we make that happen? And it worked! I worked with a man with very complex needs, including behavioral issues and he was deaf. He has spent most of his life at the state institution. I recall the day we got the call asking for us to come and get him at the deaf club he attended, and not bring him back. He kept coming back with money, which we did think was odd. He liked coffee and he knew that money was valuable, but he didn’t connect those things. They had a coffee pot and a jar you put your change in for donations. He was filling his cup with coffee, and his pocket with the change. Today, there would be some behavior program to address that. But then, over a period of time he tried returning shopping carts at the local grocery store, and that went well. Ultimately, he ended up working at the Post Office making more money than his DSPs and fitting in great because everyone there wore headphones all day and didn’t talk to one another. He ended up being an actual member at a church. This was all from people reading the book, following the steps in the book, and helping people live better lives. We talk about those kinds of stories as the great outcomes, and for this person it was a really good outcome. But I want to note that it wasn’t like that every time. There was an individual who spent a lot of time trying to hit people with his cane. He certainly had life experiences that would explain why that was going on, but during the time I was there we did not have similar outcomes with him. I say that because we sometimes talk about PCP as if it’s that magic wand and it absolutely is not. It’s a tool and a way of thinking about things. The outcomes depend upon the individuals.
At that time, it was a process we were using because we wanted to – it wasn’t formalized. When it worked, it was because the people who helped make the plans also carried out the plans. In this case it was the direct support staff, but it didn’t have to be. The people who helped make and carry out the plans understood very deeply that this was a process and not simply just a meeting – it didn’t begin and end there. And, it happened one person at a time which is critical at the systems level. It happened because individuals were willing to take risks – the individual served, the staff, the agencies, etc. It was done in a context of a system that supported risk, supported innovation, and was concerned with quality versus just compliance.
When the process didn’t work it was often due to complex issues and traumatic histories, or risk wasn’t tolerated because someone had a health issue, etc. Something that contributed to that was when it was really done from the top down. Thirty years later, we’re in a different state. PCPs have become bureaucratized which is almost inevitable. It’s hard to do something one person at a time on a systems level without having some things happen to it. We know a lot of people aren’t getting what they want in the process. We know that systems continue to be siloed, which is a particular problem for young adults going through the transition process. Also, at the time we had a very progressive Department. Having that energy throughout the system matters. Currently, Maine looks a lot like the rest of the country, and the National Core Indicators (NCI) data indicates that. OADS is committed to addressing these issues and supporting this work. This is wonderful, because without the larger Department investment that can’t really happen.
The context we live in now, there are a lot fewer people who receive services that have had as unusual or traumatic lives then the people with whom I previously worked. Families are engaged and supports are there and helpful. We have a system of people who want things to be better and are invested in making it happen, which we lacked – back then most people didn’t have family members involved or providing support and advocacy for them and their needs.
What we’d like to do now is talk about some of the things we are doing that’s working well, or the things we could be doing but aren’t. For example, I referenced the NCI data. One thing that wasn’t as consistent as some responses was how many people remember what’s in their plan. According to the NCI data, 91% of people reported they understood what went on in the meeting and/or the plan, but only 75% of people said they could remember what was in the plan. This got me thinking how we present information to people. Accessibility is key. Self-advocates reported that they never had a plain language version of their PCP. Some people said it had been explained in plain language, but never on paper that way. Perhaps that would be helpful.
Monique: Being mindful of the person for whom the plan is developed, and their ability to process information, is key. Self-advocates often feel pressure to respond in the moment. They often need time to sit and think without that pressure, and not everyone is comfortable with silence. They would also like to have things explained in language they understand – such as plain language. Some people don’t know how to get a copy of the plan should they want to do so. If we could find a way to make those plans accessible to everyone, it might be a better used tool on a day-to-day basis.
Rachel: It wasn’t reflected in data, but the experiences of the people who did the NCI interviews reported feedback that a surprising number of people didn’t appear to be aware of their PCP. Another piece of feedback that we received from parents as well as self-advocates, is that it would be helpful if people were clearer about various limitations or timelines or requirements – just explicit about it. This was particularly prevalent with the SUFU members, who were frustrated that things weren’t happening. If you were familiar with how the system works you would know that some things take longer, like attaining a Section 21 waiver and housing, so explaining that clearly to self-advocates is important. We’ve also heard, that when it’s done well, turning someone’s wishes or dreams into reality might involve the nitty gritty of writing very specific goals and objectives, and that is a skill that’s helpful if someone has. We’ve heard from some people that they have been asked to write their own goals, and they don’t have the tools to do so. Measurable and objective goals can be difficult. I have helped a few people with that – taking something very broad like “I would like to be involved in a community activity” and figuring out how you break it down for people and keep it person-centered. Sometimes the steps to get there aren’t enjoyable. When goals are hard, like developing relationships or getting a job, how do we help break down those goals into actional, reasonable steps which people are capable of doing? Every single person who has a plan can do part of it, but if the gold standard is they have to do it themselves it’s concerning because that’s how people can end up with plans that aren’t representative of their true wants and desires. The meeting part of it is difficult too. How do you learn how to do things? Often times by observation. How many people have done PCPs? You’ve likely never watched someone facilitate their own plan so knowing how to do so is difficult.
Monique: I would add ensuring there’s flexibility and evaluation in the goal. Self-advocates have reported that they were unable to meet goals because circumstances changed or barriers emerged, and no one checked up on them and adjusted their plans accordingly. Remembering that PCP is a process and not a simply an annual meeting is key. Many people have said their experience is it’s a meeting one time a year, not a continuous process. Self-advocates often hear “if you want to do that put it in your plan.” But they often don’t know how to do that. Being mindful of what the process is like for the individual is extremely important.
Discussion:
Rachel: We were hoping to come back with some helpful feedback for people who ask us questions. What do people do that helps make it work?
-A parent stated that his son had issues with processing information in the PCP meeting, with people with whom he’s unfamiliar. They give him a pre-meeting and agenda-setting process, which acts as a heads-up weeks ahead of his PCP meeting. He stated that he has taught his son that agendas are very useful, asking him to make a list of things important to him and that he wants to talk about, and then has him follow the list at the meeting. They emphasize that it’s his meeting and develop the agenda with him. This helps him prepare and gives him extra time. Sometimes you have to let the silence just happen. He stated that sometimes his son will have a great idea, but it will take him some time to articulate it in the meeting. Time for this has to be allowed and be comfortable with letting the meeting take its course.
-A parent stated that in her son’s meeting, he chooses to join the PCP meeting for just a few minutes. He’s been talking with them and with trusted DSPs and his case manager over the year, and he has indicated what he wants. The rest of the meeting is about everyone else around the table developing how to actualize his wishes.
-A parent stated that when the PCP process first emerged, she was horrible with it. She stated that her daughter is non-verbal and has a very strong will. Dave Hingsburger was helpful coaching her during phone calls. Now, her daughter does not speak but she communicates, with staff understanding her better than some of the other residents in her group home. It’s about patience and taking time to ensure she understands. She doesn’t usually stay for the full meeting, but if she wants to come, she does. Her daughter communicates with her nonverbally when she’s off base in the meeting. It’s a wonderful approach and builds confidence in the process. It’s important to have patience with parents, because they are also under a lot of stress. When she went through sleepless nights with her daughter, she didn’t have time to go through all of the paperwork; simple language, bullet points, lots of white space on the page, would all have been helpful. Parents deserve a lot of praise, if you talk to parents like you talked to this group today it would be wonderful, as it gives such confidence in the work.
-A parent stated that one of the most wonderful lessons she learned in the process of PCP (with self-directed services operating as the delivery system), the self-advocate indicates their causal agency. No one has to communicate verbally, nor does a self-advocate have to show up at a time that a team chooses and stay through an entire meeting that includes anxiety-producing paperwork.
-A parent stated that it’s helpful to highlight the pre-meeting work. Her son is non-verbal too. It would be helpful to get out of the rut and the way things have always been done, and instead come up with the dreams, those things that have never even been thought of, and give self-advocates opportunities and see how they respond. Periodic check-ins on the plan throughout the year would also be very helpful.
Rachel: I worked with a staff person who wanted to do a PCP for himself since he did them with individuals, so he would know how it felt. He said it was the worst, anxiety-provoking experience. It’s definitely eye-opening.
-A self-advocate stated that the best way to sabotage a meeting is by having too many people in it – nothing gets done. Research has shown that meetings with too many people results in confusion, exhaustion, etc. The best PCPs are when it’s a celebration – recognizing accomplishments, celebrating things of which everyone ought to be proud. If you can make a meeting fun, then it reduces that stress and anxiety, and promotes abilities versus disabilities. This creates an environment to which people look forward.
(An aside as a follow-up to the last meeting: It was stated that it has been changed so that you can no longer look up people’s guardianship paperwork online.)
Teresa Barrows: I have a few people here today who have come to listen. As part of our transition strategy, we’re considering adapting the PCP process for children, so we wanted to try to learn more about it through this presentation. For anyone who has shared their experiences, I’m curious if it would have been helpful to have had a similar, consistent process in the Children’s world.
-A parent and former special educator stated that the IEP process was similar to the PCP process, but for his students he tied the two meetings together for transition planning. Unfortunately, a lot of students don’t have a lot of knowledge around the IEP process, but having students create their own agendas and participate as much as possible in the IEP helped them to express their desires and goals in their PCP process. He stated that he found the two processes quite similar in his experience.
Teresa: I was just wondering if consistency between the IEP and the case management plans would be helpful.
-A parent stated that when her daughter was transitioning from elementary school to middle school, and middle school to high school, she made a list of “must-haves” and “would like to haves.” This helped with planning and clarity. Additionally, inviting the kids to the meetings at every level is important.
-It was stated that it would be helpful if the PCP is used for children's services. It would make for an easier transition to adulthood by allowing for a quicker and easier application process for Children's case management.
Rachel: From what I’ve heard, my guess would be that parents would say that it would be helpful. The challenges of getting their non-school services coordinated and getting everyone thinking about those important transitions throughout the lifespan would be very helpful.
- It was stated that it would be helpful to use tools and strategies that make the information visual - gather information that may become goals or could help suggest goals, and then provide visual ways for people to offer input or indicate choices. The visuals need to be more than words on a page - drawings, images, graphics, charts, etc. The use of magazines and picture boards could be helpful. Visuals are helpful for all involved. Many people who use speech, for example, experience gaps between expressive and receptive language. The visual supports processing and may facilitate other ways of seeing the information - by the person and those providing support. People comprehend things is a variety of ways, and solely using words could limit processing and understanding.
Rachel: Visuals tap into a different way of thinking then words alone do. The actual tools within the PCP using visuals could be very helpful.
-A parent stated that in her experience if meetings lead to something then they’re worth it for her. In an ideal world, a PCP that has good objectives and instructions to carry them out can lead to the change for which the person is looking. If the goals are broader, such as having their own place to live for instance, but they’re on a waiting list, then a PCP doesn’t seem as useful or as meaningful. When self-advocates sit through meetings, they have people discuss intimate parts of their life and that’s very difficult. And, the idea of having the people doing so going through that same experience to gain a better understanding of what the self-advocate is experiencing, as the individual Rachel spoke about earlier did, it would be helpful.
-A parent stated that one of her son’s issues has been that he received his waiver a little bit ago, but he hasn’t been able to find any support staff. He has a PCP but there aren’t staff out there to help him carry it through. (In the chat Betsy Hopkins suggested this parent email her [email protected].)
-It was suggested that she get in touch with the case manager to assist with this.
-A parent stated that she also had tremendous difficulty finding a provider with available staff. She recruited five different part-time workers, and none of them made it through the provider training sessions, as so many of the hours of training related to congregate settings. She stated that she looks forward to learning that OADS is encouraging the creation of person-specific trainings, so that more folks can work part-time, just for one person.
-A self-advocate stated that people can create their own systems. Some people do not fit into the molds cast by the system and don’t fit well within agencies’ programs. If people aren’t finding programs that meet their need, there ought to be other, flexible, and creative ways in which the individuals’ needs can be met and the system ought to support this.
-A parent stated that through AmeriCorps, young people have the opportunity to provide a service to the community and get a small stipend. Exploring that would be advantageous. It was stated that there is money coming into the state from HUD, but none of it is going to people with disabilities. People with disabilities who get Social Security qualify for low-income housing. It was asked why this hasn’t this been done for people with ID/DD who are able to live independently.
Staci Converse: Despite us being an Employment First state, it often times seems like just a formality and not a real exploration of employment opportunities. And, too frequently I’m working with folks and finding that the goals aren’t reflective of what the individual wants, but what the team wants – such as “I want to shower more frequently.” That may be related back to a goal the person has, like if the person wants to make friends, but it is certainly not the individual’s goal.
-It was stated that the employment work needs to be started earlier. These behaviors need to be practiced in high school, so people have the opportunity to practice being in community settings. A self-advocate in high school stated that her work goals are around her vocabulary and community service, though that has been affected by the pandemic. She has volunteered with her local Fire Department as well.
Staci: Absolutely. The expectation that people will have jobs when they graduate high school is important. The goal is to get the services you need but also to be employed. In the past employment expectations have been too low.
-A high school special education teacher stated that her students attend their IEP meetings, and beforehand they facilitate and model how they can showcase who they are, what their passions are, who they are as people. It is hoped that as they learn that soft skill, that will carry through to being an active participate guiding their PCP process. The prospect of students aging out when they turn 22 is great as well. Students need a set of skills that needs to be addressed in their freshman or sophomore years, to build a framework so that by the time they become 20 or 21 they are employable. The SMACT meeting last week that Nancy Peavy pulled together included the prospect of having a cross-pollination of these agencies, to brainstorm ways in which to make this better. Transitioning isn’t about transitioning from high school to whatever is next, it starts the moment they arrive in school. People are always transitioning, so using that language as a means to convey change, and what that changes includes, is helpful.
Cullen: There are a lot of exciting things happening pertaining to this, the idea of a lifetime waiver, extending the age-out age, and so on. The Department ought to be commended for listening to feedback around this and working to see it come to fruition. We’re seeing a further emphasis from OCFS to make transition be a very fluid, lifelong process, which fits with the Blueprint for Effective Transition created by the Coalition. With staff from OADS and OCFS being consistent attendees at these meetings, it appears that there’s a conscientious effort to eliminate those silos that we have encountered for many years. It’s very exciting!
Resources related to the presentation:
Cullen: Thank you both for being here and starting such an important discussion. Hopefully this will be the beginning of a longer conversation that allows us to optimize the PCP process so it can work better for everyone.
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 – Associate Director, DHHS-OADS Disability Services: Unfortunately because of the storm the State closed last Tuesday and we weren’t able to talk through new guidance that came out regarding the state deciding to change whether or not community support agencies could open up and provide services. The state decided to use a 14-day lookback instead of a 28-day lookback for COVID cases. We went from most of the state being red, meaning programs could not open up, to most of the state being green. This does not mean that COVID is not a concern, but they decided to open it up because we heard so loudly that people wanted to make the decision to safely return to services, and agencies make the decision to safely reopen and provide services. We’re going to walk through the guidance at our weekly Stakeholder call tomorrow, but I will provide a link to it: https://www.maine.gov/dhhs/sites/maine.gov.dhhs/files/inline-files/covid-19-guidance-in-person-services_2.pdf
Also, we are having a series of listening sessions, in which we will listen to people’s input into the Chapter 5 regulations that govern behavioral support for people with ID/DD in Maine. We’re in the process of opening the rule, as it will need to be amended in order to be in compliance with the HCBS Settings Rule, but we wanted to open the door further to hear about changes people would like to see. We’ll frame those listening sessions at the beginning, and discuss what’s in Chapter 5, but I’ll also share a link to that so people can see when those sessions are and how to register: https://www.maine.gov/tools/whatsnew/index.php?topic=DHHS-OES-Updates&id=4119171&v=details-2020
There’s always a lot going on with COVID with testing and vaccinations, both of which are constant conversations with OADS and across the state. I’ll say that we are working closely with the CDC around all of those topics.
-It was asked what Chapter 5 covers.
Betsy: This is specifically for behavioral services for people with ID/DD and Autism.
Laura Cordes - MACSP: Is this specifically for adults or adults and children?
Betsy: It’s just for adults.
It was asked if young adults are considered adults when they turn 18 or is it the age-out age. It was asked if adult services apply to adults who are no longer in high school.
Betsy: I’m talking about people who want to apply for adult developmental disability services. You can apply as early as 17 ½, and people become eligible at age 18 and on - even if someone is getting services during that time or still in school at that time.
Cullen: Thank you very much, Betsy, for being here!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: As we’ve said many times, we’ve taken your input and put it into our roadmap. Amanda is working hard on a survey that will go out to Children’s case managers regarding their training needs for understanding the adult system. We’re working with OADS and the Office of Behavioral Health on this as well. We’re starting there, it doesn’t mean we won’t expand that survey to parents etc. We’re continuing to work on building our map moving forward. It’s a large project and the more we work on it the more we realize just how large a project it is. We want to slow it down enough to ensure we do it well. We will continue to solicit input and feedback from stakeholders.
Cullen: Thank you, Teresa, for continuing to attend these meetings and solicit feedback from the Coalition. And, thank you for this work – it’s been long overdue and it’s quite exciting to see such investment in bettering the world of transition.
Special Education
Beth Mylroie: Retroactively as of January 1st, the State of Maine has extended this academic year for anyone who would age out, they now have the option of extending until their 22nd birthday.
Nancy Peavy: I’m the Transition Specialist for Portland Public Schools. I think having a couple more years to do transition planning for students will be helpful. This is the age most other states allow people to stay in school, so this is getting Maine caught up and it really needed to happen.
Cullen: My son happens to have a birthday that falls in July, so he had the full benefit of going through that entire last year of school, since the birthday cutoff is October. It seemed like many of his peers didn’t have that same opportunity and had their time cut short. This is a great move and is very exciting.
SMACT (Southern Maine Advisory Council on Transition)
Nancy Peavy: SMACT meetings occur on the first Friday of each month, currently via Zoom, at 1pm. This past Friday we had Theresa Jack from OADS discussing services and the waivers. I’m working on getting the video accessible online for people to view. I’m currently working on SMACT’s website and will let you know when that’s up and running. As a reminder, if you want to be on the email list feel free to email me ([email protected]).
Disability Rights Maine (DRM) Update:
Staci Converse: Some of the cases we’re seeing right now are individuals and families complaining about staff members who refuse to wear masks. We’re also just starting to receive cases where private guardians, based on their beliefs, are refusing vaccinations for people for whom they’re guardians. We’re working through these with families and the guardians, but those are starting to come in. We’re also working with a lot of youth who are getting a lot of nursing services, and when they transition to adult services don’t have the services to meet their needs, as the waiver system doesn’t really accommodate people with severe medical needs. We always have a lot of trainings going on and you can check our website out for more information on those. (Click here for DRM’s website, scroll down and events are on the right.)
Federal & Housing Updates:
Cullen: President Biden has signed numerous executive orders to undo policies put in place in the previous administration. It appears Congress will pass a $1.9 trillion COVID economic relief plan, which is welcome news (available details for which can be found below). Additionally, this administration appears to be dedicated to increasing access to affordable housing, which as many of you know is sorely lacking in Maine and across the country.
Below is the full Federal Budget and Housing Update:
On 1/20/21 President Biden signed an Executive Order extending the CDC’s eviction moratorium through March 2021. The CDC’s original moratorium took effect on 9/4/20. It applies to covered tenants facing eviction for nonpayment of rent who present a signed declaration to their landlords that they meet certain income and hardship criteria. Although the COVID relief package passed in December includes $25 billion in rental assistance, little or none of that money has reached people. An extension of the eviction moratorium will give states and cities more time to set up their programs and help renters pay off rental debt and provide for future payments.
The House and Senate passed a budget resolution for fiscal year 2021, a first step toward enacting much-needed COVID relief using the fast-track “reconciliation” process for high-priority fiscal legislation. Congressional leaders are moving quickly to pass COVID-19 relief legislation in the coming weeks.
President Joe Biden recently unveiled his $1.9 trillion COVID-19 and economic recovery plan. The plan calls for:
A group of 10 Senate Republicans, including Senator Collins, released a $600 billion stimulus plan, as a means to begin bipartisan negotiations with the Administration. However, this plan does not include resources or protections for renters and people without homes. In addition, the plan excludes needed resources for state and local fiscal relief and reduces funding for direct stimulus checks and unemployment benefits.
State Legislature Update:
Cullen: Laura, thank you for your immense work to keep us up to date on what’s going on in the Legislature!
Laura Cordes – MACSP (Maine Association for Community Service Providers): Since we last met the Legislature considered the Supplemental Budget, how lawmakers are addressing the budget under which we’re currently operating. The governor proposes the Supplemental Budget, and then lawmakers negotiate on changes. There aren’t cuts to ID/DD services, which is great, but it doesn’t fully address the workforce crisis and DSP rates.
Supplemental Budget:
Laura: I want to review a set of bills that might be helpful for this group. It’s such a different Legislative Session, doing everything remotely. Bill writing is generally a very in-person process. They’re not physically present to do that so the system has been slower. As such, a lot of the bills we discussed at the last meeting, the Legislative Requests (LRs), have not turned into Legislative Documents (LDs), bills with text. I have culled some of them to include here for our discussion. (Click here for the HHS, AFA, and Education Committee member contact information, and the list of bills Laura reviewed.)-It was stated that there is a new process for public comment. Click here for more information.
LD 221 – Biennial Budget:
Cullen: Thank you, Laura, this is great! If anyone resides in any of the districts of the Committee members Laura included in the document we reviewed, you would be an ideal person to contact those Committee Members regarding the Supplemental Budget, the Biennial Budget, and any bills of interest to the ID/DD world.
Often times we can send out action alerts, and have people take it upon themselves to reach out and submit public comments on bills. The Supplemental Budget includes some targeted resources that will be greatly beneficial in the interim. Sometimes there are issues that are so obviously universally great ideas that we weigh in as a Coalition. This perhaps is one of them.
Action item: There was a motion, which was seconded and approved unanimously, for the Coalition to support advocacy efforts supporting the Supplemental Budget and its amendments.
The next meeting will be on Monday, March 8, 2021, 12-2pm, via Zoom.
Featured Speakers: Topic: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (Maine DDC). Topic: Final Phase II Early Childhood Special Education Independent Evaluation Report to the Legislature, and related legislation and discussion pertaining to Children with ID/DD in Maine and their needs.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(in 2021 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].
Click here for a link to a recording of this meeting
Cullen Ryan introduced himself and welcomed the group. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted.
Featured Speakers: Rachel Dyer, Associate Director, Maine Developmental Disabilities Council (MDDC), www.maineddc.org and Monique Stairs, Executive Director, Speaking Up For Us (SUFU), sufumaine.org. Topic: Person Centered Planning (PCP).
Cullen: Today we have Rachel Dyer, Associate Director of the Maine Developmental Disabilities Council (Maine DDC), and Monique Stairs, Executive Director of Speaking Up For Us (SUFU), presenting on Person Centered Planning (PCP).
Rachel Dyer: We did not prepare a PowerPoint today because it’s hard to have a PowerPoint on the screen and have a conversation with people. I do have some notes on my screen, so please interrupt if you need to. Monique and I are very happy to be here today. I have been working at the MDDC for more than 10 years and I’ve been hearing about the PCP process in adult developmental services the whole time I’ve worked there. Before I worked at MDDC I worked in the field, so I had firsthand experience. We’ve heard about what is working, what isn’t, and what needs to change due to the HCBS Settings Rule. There have been a lot of forums and stakeholder groups pertaining to this. Most of our members have personal experience with the PCP process for adults. Monique and I are going to talk a little bit about what we’ve experienced in our professional roles and facilitate a conversation which will hopefully assist people in their own PCP process. We’re really here because the issues with the PCP process come up frequently when we talk about what needs to happen in the system, and it’s been a long time since we’ve had a conversation around this. We hope to talk a little bit about the history of the PCP process and the context of it, and some of you will know more about this than we do. We hope you’ll find it useful. We really thought about it in terms of coming out at the end sharing what works for you, your family members, and the people you support. We have extensive documentation about what doesn’t work, but our hope is to see what is working, and what will help the system as it is today.
Monique Stairs: I’m interested in that last part too. It’s important to talk about where we’re at now with PCP, and how we can make that process better for people currently. I’m looking forward to hearing others’ experiences as we continue to collect stories folks have had.
Rachel Dyer: I wanted to talk a little bit about the history of PCP. My own introduction to PCP was around 1990 when I was a DSP, and then went on to become a house manager, in a four-bed intermediate care facility (ICF). It was a great time to be doing that work. We didn’t have an ongoing staffing crisis because wages were good, and the agency I worked for was very progressive. As long as you followed the rules you were allowed to try things out. We learned about PCP from Dave Hingsburger. He did a lot of traveling to train people, and we bought some books to research it and try things out. I was blown away by how cool a thing it was. Here was this process developed for people with very significant challenges; it was not lifted from the medical model; it was made for people with little or no social support at all outside of their paid support. It was developed for people who mostly had very unusual and often traumatic life experiences. This process took all the things I had learned about ID/DD and put it all together. It took all of these clinically based things, but then said here is a way to help approach service provision in a way that betters people’s lives – which is the purpose of the whole thing. It’s the whole reason why we have services – to help people live better lives. PCP was developed in the 1970’s, developed to help someone decide what they wanted their life to look like, and what support was needed to get there. It revolutionized the ID/DD world, and was the first model that didn’t highlight people’s deficits. The questions are who are you, what do you dream, and how do we make that happen? And it worked! I worked with a man with very complex needs, including behavioral issues and he was deaf. He has spent most of his life at the state institution. I recall the day we got the call asking for us to come and get him at the deaf club he attended, and not bring him back. He kept coming back with money, which we did think was odd. He liked coffee and he knew that money was valuable, but he didn’t connect those things. They had a coffee pot and a jar you put your change in for donations. He was filling his cup with coffee, and his pocket with the change. Today, there would be some behavior program to address that. But then, over a period of time he tried returning shopping carts at the local grocery store, and that went well. Ultimately, he ended up working at the Post Office making more money than his DSPs and fitting in great because everyone there wore headphones all day and didn’t talk to one another. He ended up being an actual member at a church. This was all from people reading the book, following the steps in the book, and helping people live better lives. We talk about those kinds of stories as the great outcomes, and for this person it was a really good outcome. But I want to note that it wasn’t like that every time. There was an individual who spent a lot of time trying to hit people with his cane. He certainly had life experiences that would explain why that was going on, but during the time I was there we did not have similar outcomes with him. I say that because we sometimes talk about PCP as if it’s that magic wand and it absolutely is not. It’s a tool and a way of thinking about things. The outcomes depend upon the individuals.
At that time, it was a process we were using because we wanted to – it wasn’t formalized. When it worked, it was because the people who helped make the plans also carried out the plans. In this case it was the direct support staff, but it didn’t have to be. The people who helped make and carry out the plans understood very deeply that this was a process and not simply just a meeting – it didn’t begin and end there. And, it happened one person at a time which is critical at the systems level. It happened because individuals were willing to take risks – the individual served, the staff, the agencies, etc. It was done in a context of a system that supported risk, supported innovation, and was concerned with quality versus just compliance.
When the process didn’t work it was often due to complex issues and traumatic histories, or risk wasn’t tolerated because someone had a health issue, etc. Something that contributed to that was when it was really done from the top down. Thirty years later, we’re in a different state. PCPs have become bureaucratized which is almost inevitable. It’s hard to do something one person at a time on a systems level without having some things happen to it. We know a lot of people aren’t getting what they want in the process. We know that systems continue to be siloed, which is a particular problem for young adults going through the transition process. Also, at the time we had a very progressive Department. Having that energy throughout the system matters. Currently, Maine looks a lot like the rest of the country, and the National Core Indicators (NCI) data indicates that. OADS is committed to addressing these issues and supporting this work. This is wonderful, because without the larger Department investment that can’t really happen.
The context we live in now, there are a lot fewer people who receive services that have had as unusual or traumatic lives then the people with whom I previously worked. Families are engaged and supports are there and helpful. We have a system of people who want things to be better and are invested in making it happen, which we lacked – back then most people didn’t have family members involved or providing support and advocacy for them and their needs.
What we’d like to do now is talk about some of the things we are doing that’s working well, or the things we could be doing but aren’t. For example, I referenced the NCI data. One thing that wasn’t as consistent as some responses was how many people remember what’s in their plan. According to the NCI data, 91% of people reported they understood what went on in the meeting and/or the plan, but only 75% of people said they could remember what was in the plan. This got me thinking how we present information to people. Accessibility is key. Self-advocates reported that they never had a plain language version of their PCP. Some people said it had been explained in plain language, but never on paper that way. Perhaps that would be helpful.
Monique: Being mindful of the person for whom the plan is developed, and their ability to process information, is key. Self-advocates often feel pressure to respond in the moment. They often need time to sit and think without that pressure, and not everyone is comfortable with silence. They would also like to have things explained in language they understand – such as plain language. Some people don’t know how to get a copy of the plan should they want to do so. If we could find a way to make those plans accessible to everyone, it might be a better used tool on a day-to-day basis.
Rachel: It wasn’t reflected in data, but the experiences of the people who did the NCI interviews reported feedback that a surprising number of people didn’t appear to be aware of their PCP. Another piece of feedback that we received from parents as well as self-advocates, is that it would be helpful if people were clearer about various limitations or timelines or requirements – just explicit about it. This was particularly prevalent with the SUFU members, who were frustrated that things weren’t happening. If you were familiar with how the system works you would know that some things take longer, like attaining a Section 21 waiver and housing, so explaining that clearly to self-advocates is important. We’ve also heard, that when it’s done well, turning someone’s wishes or dreams into reality might involve the nitty gritty of writing very specific goals and objectives, and that is a skill that’s helpful if someone has. We’ve heard from some people that they have been asked to write their own goals, and they don’t have the tools to do so. Measurable and objective goals can be difficult. I have helped a few people with that – taking something very broad like “I would like to be involved in a community activity” and figuring out how you break it down for people and keep it person-centered. Sometimes the steps to get there aren’t enjoyable. When goals are hard, like developing relationships or getting a job, how do we help break down those goals into actional, reasonable steps which people are capable of doing? Every single person who has a plan can do part of it, but if the gold standard is they have to do it themselves it’s concerning because that’s how people can end up with plans that aren’t representative of their true wants and desires. The meeting part of it is difficult too. How do you learn how to do things? Often times by observation. How many people have done PCPs? You’ve likely never watched someone facilitate their own plan so knowing how to do so is difficult.
Monique: I would add ensuring there’s flexibility and evaluation in the goal. Self-advocates have reported that they were unable to meet goals because circumstances changed or barriers emerged, and no one checked up on them and adjusted their plans accordingly. Remembering that PCP is a process and not a simply an annual meeting is key. Many people have said their experience is it’s a meeting one time a year, not a continuous process. Self-advocates often hear “if you want to do that put it in your plan.” But they often don’t know how to do that. Being mindful of what the process is like for the individual is extremely important.
Discussion:
Rachel: We were hoping to come back with some helpful feedback for people who ask us questions. What do people do that helps make it work?
-A parent stated that his son had issues with processing information in the PCP meeting, with people with whom he’s unfamiliar. They give him a pre-meeting and agenda-setting process, which acts as a heads-up weeks ahead of his PCP meeting. He stated that he has taught his son that agendas are very useful, asking him to make a list of things important to him and that he wants to talk about, and then has him follow the list at the meeting. They emphasize that it’s his meeting and develop the agenda with him. This helps him prepare and gives him extra time. Sometimes you have to let the silence just happen. He stated that sometimes his son will have a great idea, but it will take him some time to articulate it in the meeting. Time for this has to be allowed and be comfortable with letting the meeting take its course.
-A parent stated that in her son’s meeting, he chooses to join the PCP meeting for just a few minutes. He’s been talking with them and with trusted DSPs and his case manager over the year, and he has indicated what he wants. The rest of the meeting is about everyone else around the table developing how to actualize his wishes.
-A parent stated that when the PCP process first emerged, she was horrible with it. She stated that her daughter is non-verbal and has a very strong will. Dave Hingsburger was helpful coaching her during phone calls. Now, her daughter does not speak but she communicates, with staff understanding her better than some of the other residents in her group home. It’s about patience and taking time to ensure she understands. She doesn’t usually stay for the full meeting, but if she wants to come, she does. Her daughter communicates with her nonverbally when she’s off base in the meeting. It’s a wonderful approach and builds confidence in the process. It’s important to have patience with parents, because they are also under a lot of stress. When she went through sleepless nights with her daughter, she didn’t have time to go through all of the paperwork; simple language, bullet points, lots of white space on the page, would all have been helpful. Parents deserve a lot of praise, if you talk to parents like you talked to this group today it would be wonderful, as it gives such confidence in the work.
-A parent stated that one of the most wonderful lessons she learned in the process of PCP (with self-directed services operating as the delivery system), the self-advocate indicates their causal agency. No one has to communicate verbally, nor does a self-advocate have to show up at a time that a team chooses and stay through an entire meeting that includes anxiety-producing paperwork.
-A parent stated that it’s helpful to highlight the pre-meeting work. Her son is non-verbal too. It would be helpful to get out of the rut and the way things have always been done, and instead come up with the dreams, those things that have never even been thought of, and give self-advocates opportunities and see how they respond. Periodic check-ins on the plan throughout the year would also be very helpful.
Rachel: I worked with a staff person who wanted to do a PCP for himself since he did them with individuals, so he would know how it felt. He said it was the worst, anxiety-provoking experience. It’s definitely eye-opening.
-A self-advocate stated that the best way to sabotage a meeting is by having too many people in it – nothing gets done. Research has shown that meetings with too many people results in confusion, exhaustion, etc. The best PCPs are when it’s a celebration – recognizing accomplishments, celebrating things of which everyone ought to be proud. If you can make a meeting fun, then it reduces that stress and anxiety, and promotes abilities versus disabilities. This creates an environment to which people look forward.
(An aside as a follow-up to the last meeting: It was stated that it has been changed so that you can no longer look up people’s guardianship paperwork online.)
Teresa Barrows: I have a few people here today who have come to listen. As part of our transition strategy, we’re considering adapting the PCP process for children, so we wanted to try to learn more about it through this presentation. For anyone who has shared their experiences, I’m curious if it would have been helpful to have had a similar, consistent process in the Children’s world.
-A parent and former special educator stated that the IEP process was similar to the PCP process, but for his students he tied the two meetings together for transition planning. Unfortunately, a lot of students don’t have a lot of knowledge around the IEP process, but having students create their own agendas and participate as much as possible in the IEP helped them to express their desires and goals in their PCP process. He stated that he found the two processes quite similar in his experience.
Teresa: I was just wondering if consistency between the IEP and the case management plans would be helpful.
-A parent stated that when her daughter was transitioning from elementary school to middle school, and middle school to high school, she made a list of “must-haves” and “would like to haves.” This helped with planning and clarity. Additionally, inviting the kids to the meetings at every level is important.
-It was stated that it would be helpful if the PCP is used for children's services. It would make for an easier transition to adulthood by allowing for a quicker and easier application process for Children's case management.
Rachel: From what I’ve heard, my guess would be that parents would say that it would be helpful. The challenges of getting their non-school services coordinated and getting everyone thinking about those important transitions throughout the lifespan would be very helpful.
- It was stated that it would be helpful to use tools and strategies that make the information visual - gather information that may become goals or could help suggest goals, and then provide visual ways for people to offer input or indicate choices. The visuals need to be more than words on a page - drawings, images, graphics, charts, etc. The use of magazines and picture boards could be helpful. Visuals are helpful for all involved. Many people who use speech, for example, experience gaps between expressive and receptive language. The visual supports processing and may facilitate other ways of seeing the information - by the person and those providing support. People comprehend things is a variety of ways, and solely using words could limit processing and understanding.
Rachel: Visuals tap into a different way of thinking then words alone do. The actual tools within the PCP using visuals could be very helpful.
-A parent stated that in her experience if meetings lead to something then they’re worth it for her. In an ideal world, a PCP that has good objectives and instructions to carry them out can lead to the change for which the person is looking. If the goals are broader, such as having their own place to live for instance, but they’re on a waiting list, then a PCP doesn’t seem as useful or as meaningful. When self-advocates sit through meetings, they have people discuss intimate parts of their life and that’s very difficult. And, the idea of having the people doing so going through that same experience to gain a better understanding of what the self-advocate is experiencing, as the individual Rachel spoke about earlier did, it would be helpful.
-A parent stated that one of her son’s issues has been that he received his waiver a little bit ago, but he hasn’t been able to find any support staff. He has a PCP but there aren’t staff out there to help him carry it through. (In the chat Betsy Hopkins suggested this parent email her [email protected].)
-It was suggested that she get in touch with the case manager to assist with this.
-A parent stated that she also had tremendous difficulty finding a provider with available staff. She recruited five different part-time workers, and none of them made it through the provider training sessions, as so many of the hours of training related to congregate settings. She stated that she looks forward to learning that OADS is encouraging the creation of person-specific trainings, so that more folks can work part-time, just for one person.
-A self-advocate stated that people can create their own systems. Some people do not fit into the molds cast by the system and don’t fit well within agencies’ programs. If people aren’t finding programs that meet their need, there ought to be other, flexible, and creative ways in which the individuals’ needs can be met and the system ought to support this.
-A parent stated that through AmeriCorps, young people have the opportunity to provide a service to the community and get a small stipend. Exploring that would be advantageous. It was stated that there is money coming into the state from HUD, but none of it is going to people with disabilities. People with disabilities who get Social Security qualify for low-income housing. It was asked why this hasn’t this been done for people with ID/DD who are able to live independently.
Staci Converse: Despite us being an Employment First state, it often times seems like just a formality and not a real exploration of employment opportunities. And, too frequently I’m working with folks and finding that the goals aren’t reflective of what the individual wants, but what the team wants – such as “I want to shower more frequently.” That may be related back to a goal the person has, like if the person wants to make friends, but it is certainly not the individual’s goal.
-It was stated that the employment work needs to be started earlier. These behaviors need to be practiced in high school, so people have the opportunity to practice being in community settings. A self-advocate in high school stated that her work goals are around her vocabulary and community service, though that has been affected by the pandemic. She has volunteered with her local Fire Department as well.
Staci: Absolutely. The expectation that people will have jobs when they graduate high school is important. The goal is to get the services you need but also to be employed. In the past employment expectations have been too low.
-A high school special education teacher stated that her students attend their IEP meetings, and beforehand they facilitate and model how they can showcase who they are, what their passions are, who they are as people. It is hoped that as they learn that soft skill, that will carry through to being an active participate guiding their PCP process. The prospect of students aging out when they turn 22 is great as well. Students need a set of skills that needs to be addressed in their freshman or sophomore years, to build a framework so that by the time they become 20 or 21 they are employable. The SMACT meeting last week that Nancy Peavy pulled together included the prospect of having a cross-pollination of these agencies, to brainstorm ways in which to make this better. Transitioning isn’t about transitioning from high school to whatever is next, it starts the moment they arrive in school. People are always transitioning, so using that language as a means to convey change, and what that changes includes, is helpful.
Cullen: There are a lot of exciting things happening pertaining to this, the idea of a lifetime waiver, extending the age-out age, and so on. The Department ought to be commended for listening to feedback around this and working to see it come to fruition. We’re seeing a further emphasis from OCFS to make transition be a very fluid, lifelong process, which fits with the Blueprint for Effective Transition created by the Coalition. With staff from OADS and OCFS being consistent attendees at these meetings, it appears that there’s a conscientious effort to eliminate those silos that we have encountered for many years. It’s very exciting!
Resources related to the presentation:
- https://inclusion.com/virtual-toronto-summer-institute-2/
- https://www.lifecoursetools.com/
- Visual
- https://diverse-city.com/online-store-2/books/
Cullen: Thank you both for being here and starting such an important discussion. Hopefully this will be the beginning of a longer conversation that allows us to optimize the PCP process so it can work better for everyone.
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 – Associate Director, DHHS-OADS Disability Services: Unfortunately because of the storm the State closed last Tuesday and we weren’t able to talk through new guidance that came out regarding the state deciding to change whether or not community support agencies could open up and provide services. The state decided to use a 14-day lookback instead of a 28-day lookback for COVID cases. We went from most of the state being red, meaning programs could not open up, to most of the state being green. This does not mean that COVID is not a concern, but they decided to open it up because we heard so loudly that people wanted to make the decision to safely return to services, and agencies make the decision to safely reopen and provide services. We’re going to walk through the guidance at our weekly Stakeholder call tomorrow, but I will provide a link to it: https://www.maine.gov/dhhs/sites/maine.gov.dhhs/files/inline-files/covid-19-guidance-in-person-services_2.pdf
Also, we are having a series of listening sessions, in which we will listen to people’s input into the Chapter 5 regulations that govern behavioral support for people with ID/DD in Maine. We’re in the process of opening the rule, as it will need to be amended in order to be in compliance with the HCBS Settings Rule, but we wanted to open the door further to hear about changes people would like to see. We’ll frame those listening sessions at the beginning, and discuss what’s in Chapter 5, but I’ll also share a link to that so people can see when those sessions are and how to register: https://www.maine.gov/tools/whatsnew/index.php?topic=DHHS-OES-Updates&id=4119171&v=details-2020
There’s always a lot going on with COVID with testing and vaccinations, both of which are constant conversations with OADS and across the state. I’ll say that we are working closely with the CDC around all of those topics.
-It was asked what Chapter 5 covers.
Betsy: This is specifically for behavioral services for people with ID/DD and Autism.
Laura Cordes - MACSP: Is this specifically for adults or adults and children?
Betsy: It’s just for adults.
It was asked if young adults are considered adults when they turn 18 or is it the age-out age. It was asked if adult services apply to adults who are no longer in high school.
Betsy: I’m talking about people who want to apply for adult developmental disability services. You can apply as early as 17 ½, and people become eligible at age 18 and on - even if someone is getting services during that time or still in school at that time.
Cullen: Thank you very much, Betsy, for being here!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: As we’ve said many times, we’ve taken your input and put it into our roadmap. Amanda is working hard on a survey that will go out to Children’s case managers regarding their training needs for understanding the adult system. We’re working with OADS and the Office of Behavioral Health on this as well. We’re starting there, it doesn’t mean we won’t expand that survey to parents etc. We’re continuing to work on building our map moving forward. It’s a large project and the more we work on it the more we realize just how large a project it is. We want to slow it down enough to ensure we do it well. We will continue to solicit input and feedback from stakeholders.
Cullen: Thank you, Teresa, for continuing to attend these meetings and solicit feedback from the Coalition. And, thank you for this work – it’s been long overdue and it’s quite exciting to see such investment in bettering the world of transition.
Special Education
Beth Mylroie: Retroactively as of January 1st, the State of Maine has extended this academic year for anyone who would age out, they now have the option of extending until their 22nd birthday.
Nancy Peavy: I’m the Transition Specialist for Portland Public Schools. I think having a couple more years to do transition planning for students will be helpful. This is the age most other states allow people to stay in school, so this is getting Maine caught up and it really needed to happen.
Cullen: My son happens to have a birthday that falls in July, so he had the full benefit of going through that entire last year of school, since the birthday cutoff is October. It seemed like many of his peers didn’t have that same opportunity and had their time cut short. This is a great move and is very exciting.
SMACT (Southern Maine Advisory Council on Transition)
Nancy Peavy: SMACT meetings occur on the first Friday of each month, currently via Zoom, at 1pm. This past Friday we had Theresa Jack from OADS discussing services and the waivers. I’m working on getting the video accessible online for people to view. I’m currently working on SMACT’s website and will let you know when that’s up and running. As a reminder, if you want to be on the email list feel free to email me ([email protected]).
Disability Rights Maine (DRM) Update:
Staci Converse: Some of the cases we’re seeing right now are individuals and families complaining about staff members who refuse to wear masks. We’re also just starting to receive cases where private guardians, based on their beliefs, are refusing vaccinations for people for whom they’re guardians. We’re working through these with families and the guardians, but those are starting to come in. We’re also working with a lot of youth who are getting a lot of nursing services, and when they transition to adult services don’t have the services to meet their needs, as the waiver system doesn’t really accommodate people with severe medical needs. We always have a lot of trainings going on and you can check our website out for more information on those. (Click here for DRM’s website, scroll down and events are on the right.)
Federal & Housing Updates:
Cullen: President Biden has signed numerous executive orders to undo policies put in place in the previous administration. It appears Congress will pass a $1.9 trillion COVID economic relief plan, which is welcome news (available details for which can be found below). Additionally, this administration appears to be dedicated to increasing access to affordable housing, which as many of you know is sorely lacking in Maine and across the country.
Below is the full Federal Budget and Housing Update:
On 1/20/21 President Biden signed an Executive Order extending the CDC’s eviction moratorium through March 2021. The CDC’s original moratorium took effect on 9/4/20. It applies to covered tenants facing eviction for nonpayment of rent who present a signed declaration to their landlords that they meet certain income and hardship criteria. Although the COVID relief package passed in December includes $25 billion in rental assistance, little or none of that money has reached people. An extension of the eviction moratorium will give states and cities more time to set up their programs and help renters pay off rental debt and provide for future payments.
The House and Senate passed a budget resolution for fiscal year 2021, a first step toward enacting much-needed COVID relief using the fast-track “reconciliation” process for high-priority fiscal legislation. Congressional leaders are moving quickly to pass COVID-19 relief legislation in the coming weeks.
President Joe Biden recently unveiled his $1.9 trillion COVID-19 and economic recovery plan. The plan calls for:
- Expanded unemployment benefits for millions of people through at least September and indicates that provisions should remain in place as long as they are needed.
- An additional $30 billion for rental assistance ($5 billion of which is dedicated to home energy and water costs and arrears).
- $5 billion in emergency assistance to help secure housing for people experiencing or at risk of homelessness.
- Extend the recently enacted 15% increase in SNAP benefits through at least September.
- State and local government fiscal relief, including funds specifically to support schools and public colleges, funding to hire more local public health workers, and aid to help states and localities avoid laying off more people.
- Expands the Child Tax Credit and Earned Income Tax Credit.
- Another round of $1,400 stimulus payments to individuals.
- Expands premium tax credits to help people afford comprehensive health coverage in the Affordable Care Act marketplaces, reducing or eliminating premiums for millions of people while expanding access to many others who are uninsured.
- Extends to CDC’s eviction moratorium until September 30, 2021.
- Increase the federal minimum wage to $15 an hour.
A group of 10 Senate Republicans, including Senator Collins, released a $600 billion stimulus plan, as a means to begin bipartisan negotiations with the Administration. However, this plan does not include resources or protections for renters and people without homes. In addition, the plan excludes needed resources for state and local fiscal relief and reduces funding for direct stimulus checks and unemployment benefits.
State Legislature Update:
Cullen: Laura, thank you for your immense work to keep us up to date on what’s going on in the Legislature!
Laura Cordes – MACSP (Maine Association for Community Service Providers): Since we last met the Legislature considered the Supplemental Budget, how lawmakers are addressing the budget under which we’re currently operating. The governor proposes the Supplemental Budget, and then lawmakers negotiate on changes. There aren’t cuts to ID/DD services, which is great, but it doesn’t fully address the workforce crisis and DSP rates.
Supplemental Budget:
- Amendments to the Supplemental Budget were considered in the Health and Human Services (HHS) Committee last week which passed in Committee along party lines, thanks to the advocacy of many of the people around this table. The amendments include utilizing the Appendix K Waiver which the State applied for to provide a 25% temporary rate increase from January through April 2021, as well as retainer payments for three months for medically necessary community support programs which have been closed since November.
- Other MaineCare providers requested additional dollars as well, such as behavioral health services and elderly services. Combined, this would be about $25 million in General Funds, totaling approximately $90 million in funding including the Federal match.
- The next step is the Appropriations and Financial Affairs (AFA) Committee, the timing of which is currently unclear, but likely over the next month. There appears to be general support for the Supplemental Budget, including these amendments, but there remains work to do.
- Everyone recognizes that the rates have been an issue for years. A permanent rate increase of at least 25% is needed, though the amendments only address the Supplemental Budget.
Laura: I want to review a set of bills that might be helpful for this group. It’s such a different Legislative Session, doing everything remotely. Bill writing is generally a very in-person process. They’re not physically present to do that so the system has been slower. As such, a lot of the bills we discussed at the last meeting, the Legislative Requests (LRs), have not turned into Legislative Documents (LDs), bills with text. I have culled some of them to include here for our discussion. (Click here for the HHS, AFA, and Education Committee member contact information, and the list of bills Laura reviewed.)-It was stated that there is a new process for public comment. Click here for more information.
LD 221 – Biennial Budget:
- The Governor’s Biennial Budget Proposal is quite promising for the ID/DD community. It’s a long road between now and the end of the session when the Legislature will adopt the Biennial Budget, but it is definitely promising.
- The Governor’s Biennial budget includes an additional $30 million in funding for Section 21 and Section 29 rates to be commensurate with minimum wage, as well as an additional $6 million in funding for Section 29, both of which are positive signs of the Administration’s dedication to bettering the system of care for this population.
- The Biennial Budget proposes rate increases, but the actual rate increase is unknown. The current intent is to bring the rate wage component up to minimum wage.
- Public hearings on the Biennial Budget begin next week. The DHHS section concerning ID/DD services will be on Thursday afternoon (2/18 at 1pm).
- Thanking the Department for the funding in the budget is an advantageous thing to do at the public hearing.
- Click here to view the Biennial Budget bill online.
Cullen: Thank you, Laura, this is great! If anyone resides in any of the districts of the Committee members Laura included in the document we reviewed, you would be an ideal person to contact those Committee Members regarding the Supplemental Budget, the Biennial Budget, and any bills of interest to the ID/DD world.
Often times we can send out action alerts, and have people take it upon themselves to reach out and submit public comments on bills. The Supplemental Budget includes some targeted resources that will be greatly beneficial in the interim. Sometimes there are issues that are so obviously universally great ideas that we weigh in as a Coalition. This perhaps is one of them.
Action item: There was a motion, which was seconded and approved unanimously, for the Coalition to support advocacy efforts supporting the Supplemental Budget and its amendments.
The next meeting will be on Monday, March 8, 2021, 12-2pm, via Zoom.
Featured Speakers: Topic: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (Maine DDC). Topic: Final Phase II Early Childhood Special Education Independent Evaluation Report to the Legislature, and related legislation and discussion pertaining to Children with ID/DD in Maine and their needs.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(in 2021 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].