October 19, 2020
Minutes
Minutes
Attendees via Zoom: Amanda Hodgkins, David Cowing, Ann Bentley, Betsy Mahoney, Cathy Dionne, Christopher Call, Geetike Chaudhary, Jessica Cavanaugh, Jessica Chow, John Tabb, Julie Brennan, Karen Tompkins, Kim Humphrey, Kristin McPherson, Laura Wille, Lorraine DeFreitas, Rachel Dyer, Robin Levesque, Ronnianne West, Sarah Robinson, Sheena Bunnell, Teresa Barrows, Mark Kemmerle, Ed & Suellen Doggett, Darla Chafin, Vickey Rand, Cullen Ryan, and a few callers who did not identify themselves.
(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 Speaker: Teresa Barrows, Children’s Behavioral Health Services (CBHS) Manager, Office of Child and Family Services-DHHS. www.maine.gov/dhhs/ocfs Topic: OCFS Update on Transition
Cullen: Today we have Teresa Barrows, CBHS Manager with OCFS to provide an update on their work on transition. As you know this group developed the Blueprint for Effective Transition, which contemplates the variety of transition’s throughout a person’s life, especially the transition from children’s services to the adult system. This group is very invested in bettering transition for people with ID/DD and we’re thrilled that it appears OCFS is using the Blueprint for Effective Transition as its roadmap. Thank you for being here!
Teresa Barrows: Thank you for having me! I wanted to introduce a few people I invited to join me for this presentation. The first is Sheena Bunnell, and I’ll let her introduce herself.
Sheena Bunnell: I’m a professor of economics at the University of Maine at Farmington. I’m also consulting with OCFS to assist Teresa facilitate stakeholder meetings to get a robust conversation going and receive feedback as we engage in this important work.
Teresa: Also in attendance is: Amanda Hodgkins, a case manager in my unit and I’ve asked her to join to take some notes for the feedback we receive; Geetike Chaudhary, who is also helping with our strategy; and Jessica Chow, new to OCFS having moved here from Seattle, who’s here today to get a feel for stakeholder meetings for our strategy and will be overseeing our new system of care grants.
Begin Presentation (Click here for the presentation)
Teresa: There are a lot of times we refer to the children’s world and the adult world, however, there doesn’t seem to be a good transition between them. This has resulted in people falling through the cracks. Our purpose today is to gather feedback from stakeholders as we start to develop the roadmap for transition age youth. Back in 2017 we worked for around 18 months with stakeholders and planned to adapt CBHS with a PCP (person-centered plan) process – we named it the CBHS Planning Process. Our hope was that we would put that into the TCM (Targeted Case Management) Rule and any other case coordination occurring, and it would be a standard process mirroring the adult PCP process. However, with the Administration at the time, this work didn’t move forward. We’re going to resurrect that and that’s where we’re going to incorporate pieces of the Blueprint for Effective Transition.
Discussion: Teresa and Sheena facilitated discussion by posing questions to which the group responded. Questions are in bold, feedback provided by participants are in italics, and responses to questions/comments are identified by name.
Question: What would have been helpful to you and your youth during your transition time?
-Parent/Maine Parent Federation (MPF): Case managers in schools do not have the information needed to assist families. Maine Parent Federation (MPF) receives calls from parents in a panic asking what they need to do. They don’t know how to make that transition from children’s to adult services – and it’s a huge leap. Having the children’s case managers be a little more well-versed in what the adult case managers know, and having the schools know they have to provide that information too would be helpful.
-Parent and former special educator: I have dual experience with transition. A few things stick in my mind, one of which is school personnel tend to be very knowledgeable about school based IEPs and DOE regulations, whereas the adult case managers know about the adult world. They are very siloed. There was a tendency to think that the work that needed to be done was being done by the other party – there wasn’t collaboration. There’s an entitlement of special education services and children’s case management, and the school system is incumbent upon them to identify needs and take a leadership role to ensure services are delivered appropriately. This gets turned on its head in the adult world. You’re floating in a new system, not understanding the system, and you as the parent or family member need to be the expert and advocate. That’s a massive transition for parents and families. Parents often go from depending on school-based case managers to community case managers in the adult world, but they’re not identical. I combined IEP and PCP meetings as soon as people were eligible for adult services. You really need quarterly meetings to stay as up to date as possible, at minimum for the last two years before students age out. I made sure everyone who needed to be around the table attended the meetings. After the IEP meeting, I would immediately call a PCP meeting and transition to that and address transition issues exclusively. It really built a system in which students and families knew the people around the table, so at the time of transition the only difference would be I wouldn’t be at the table, but the structure would be in place. This was very helpful for everyone involved. Getting the various case managers in the same room at the same time with the family was very, very useful. I’ve been a long-term advocate for there being a six to twelve month overlap in children’s and adult case management so that warm handoff can truly happen. At graduation time, one of the last pieces of paper is the Summary of Performance document. I’ve found that I saw the bare minimum included in them – test scores and evaluations, etc. I tried to turn that into a real two- to three-page summary of the student’s abilities, strengths, and needs so that everyone involved had a real snapshot of the individual. I also handed the family all of the various evaluations in a folder so that they had all of the needed documents for eligibility in one place.
-Parent/Autism Society of Maine (ASM): For me it was always around Voc Rehab and the system around that. I had some great Voc Rehab services but it’s not the same across the state. Many parents have stated that Voc Rehab wasn’t attending meetings, etc. Parents across the state aren’t being equitably served in this area and it’s a struggle for many families in transition. Voc Rehab is huge, because kids need skills training while they’re still in school and it’s not happening uniformly across the state. The Summary of Performance for my son was quite detailed, however generally in the public-school system they don’t understand the great importance of this document for people as they transition to life and services beyond high school in the adult world.
-Parent: My son has severe behavioral issues. When he was in children’s services he had been asked to leave and emergency discharged from group homes in Maine and ended up in New Hampshire until age 20. I remember looking at the Blueprint for Effective Transition and it made me realize adult services are not comprehensive. My son is in his fifth group home in four years. He spent a lot of time at Spring Harbor as a child. My son is not unique in these regards. Most of my son’s housemates don’t have family. I worry everyday about what will happen to my son when I’m no longer here. The areas on the Blueprint are not happening for my son. He has lost so much that he gained as a child. The system isn’t prepared for the number of people who will need residential placements. Not all, but some staff at group homes do the bare minimum. My son has a quality of life because of me. I’ve been told that adult services programs can’t hire staff. Children’s services are being cut. There was a bill in the Legislature for parents to be able to be employees of agencies so they can be reimbursed for service provision. This would be huge. I greatly appreciate DHHS asking people for feedback.
-Parent: My son has severe Autism. He’s in a good situation now. I started looking for information early, and it was very hard to find. I remember appreciating the conference on transition, where everything was laid out and I could talk to a bunch of different providers all in one place. Schools need to encourage parents to start looking early. Schools don’t realize how much parents have to do. It’s not easy.
Question: If you were to change one thing in the system in regard to transition what would it be?
-Parent: Some transitions could be better if adult agencies follow through with what children’s services created for support.
-Parent/ASM: If we had a system where children’s case managers could follow the child into the adult system, and the adult case managers start working with the child before they transition into adult services, transition would be far improved. Unless everyone is sitting at the same table, you’re not going to get that information.
-Parent and special educator: The warm handoff between children’s and adult case managers is key. Families establish close relationships with the children’s case manager and it’s hard to go through that change. You have to finesse that relationship piece, and school personnel are key to that. When you make that transition and the school personnel isn’t there and the children’s case manager isn’t there it’s a huge change. Think about one transition at a time. Before you lose school-based and children’s case management, transition to adult services so it’s less of a shock when you leave the school system.
-Parent: My son couldn’t do a good transition without the waiver. The school wanted to assist with that transition, but without having the waiver and knowing what was ahead, it was hard. You can’t set plans for the future without knowing what town your child is going to be in with the waiver. You can do more with the community if you plan ahead.
Question: When your child was transitioning did you have all of the information you needed?
-Parent and former special educator: When people discussed supported employment, I had no idea what that meant. When people discussed group homes, I didn’t know what that would look like, how my son would access the community, etc. I didn’t know what a day program looked like or what activities were involved. I’ve found that parents need very concrete information. As a parent I wanted to see something to have a tangible representation of what the services looked like so I could see how it would fit for my son.
-Parent/ASM: When my son was graduating, though he had a good transition, one thing did come up. We knew he was going to receive Section 29 for day hab. I got to visit the program. What they don’t tell you is that each day hab has its own policies. When he got there, they did an assessment and he was categorized as someone who needed two-on-one care. It’s important for families to understand that they may like a day hab, but their child may not be able to go there, or there may be a waitlist for their children based on their circumstances and needs. These services and policies are not the same across the board.
-Parent: In Portland, I still can’t find any program that’s more than one-to-three, and my son needs one-to-one. If someone can’t go to a day program and is unable to work, what does that mean for their quality of life? Options in the community are too limited.
Question: Was your school helpful in the process of transition? If you were to change one thing in the system in regard to transition what would it be?
-Parent/MPF: Schools want to do the best they can, but they don’t always have the information needed. There are a lot of agencies out there, including MPF, that strive to help parents and providers find the information they need. We get the door slammed in our face a lot in the schools. We’ve lived this experience. Schools and providers and doctors etc. ought to listen to parents and family members with this lived experience. Maine Parent Federation outreaches and provides brochures to pass along to families. The schools know the families that could use the extra support; if they were willing to pass along these flyers to families that would benefit it would be incredibly helpful. It’s telling that no one from DOE is here today; that’s part of the problem.
Cullen: This is an open meeting. We have had people from various school departments attend, but not representation from DOE. The more we can have key decision makers at the table, hearing this dialogue, the better the system will be improved. The system is siloed, and I’m hearing from the feedback today that the system is very fractured. As a parent I can tell you that there isn’t a roadmap that spells out exactly what you have to do and when. The more that people talk to one another, the more the system will be improved.
-Parent/ASM: If there aren’t decision makers around the table it won’t filter down. They need to participate. Transition to adulthood is a huge issue.
-Parent and former special educator: Parents come to the table completely overwhelmed. Having a son or daughter with significant needs is an act of love but it also dominates your entire life. You’re trying to get up to speed with the adult world of supports – it’s like drinking from a fire hose. Special educators are in the same kind of situation at school. You’re trying to mainstream your students, make sure all of the paperwork is done and in compliance. You’re working overtime just to make school happen for these kids. So, to get on a learning curve where you’re knowledgeable about things in the community, and the pros and cons of all the different kinds of support is a real heavy lift. The collaborative piece is essential. No one knows it all, you need to have all of the experts around the table. “I don’t know” is a great starting point for saying “let’s find out.”
-Parent: The hardest issue I’ve had over the past 52 years is trying to figure out 24-hour care. I felt like I was going to a bunch of used car salesmen. All of our kids are so different. No one wanted to admit that they didn’t really want my child, let alone they didn’t know how to take care of her. So, six months later I’d get the response that no one wanted to take care of my child. That long transition of people talking to each other would have helped as all voices would have been heard. No one would be criticized for saying “that’s not my expertise.” If agencies don’t say that and if a solution isn’t found the child loses out, hope and love is lost, and it’s rough. My daughter is confident with communicating with me remotely, even though she’s nonverbal, because of the quality of support she receives.
Teresa: A transition conference was mentioned. I keep thinking if it would be helpful to have transition information somewhere – on a website, or a place where you can go and look at it? Or if it’s more helpful to have people explain things versus just seeing it listed?
-Parent/ASM: There are individuals in place to help families navigate the system. But everyone is so different. A website would be helpful, but there needs to be someone there to help interpret it and apply the resources to people individually. A large packet of information just handed to parents is overwhelming.
-Parent/MPF: When I get a referral, I look at what the family needs. Then, I look at my list of family navigators and match them based on experience and knowledge for each individual situation. Sometimes issues come up and they need assistance with other things that navigator doesn’t feel comfortable helping with, so someone else will step in and assist. Having someone who has been there and lived it and knows their way around the system is imperative. We know these programs, but parents are overwhelmed. Parents don’t know where to look for the information they need. They need someone to say, “I think this would help you, here is a phone number.” We can help these families if we’re given the opportunity.
-Parent and former special educator: I partnered with MPF for trainings for years. We would get speakers around identified subjects and have families come in for trainings after work. The challenge was we had parents coming from Biddeford, Belfast, and Rockland to Brunswick because they were so starved for information. The system ought to contemplate the range of families its dealing with and their individualized needs. Some need face-to-face meetings, some prefer telephone etc. Families face their own challenges as well.
Cullen: We’re so lucky to have MPF, ASM, and Community Connect. One of the things this Coalition has done is create a timeline, which can be continually updated. More is more. Overwhelmed families are starved for information, and the more that’s out there and the easier it is to find the better. Feel free to send information to me so we can post it to the website, which is designed to be an information clearinghouse. Information helps people to settle and feel safer.
Teresa: It appears it would be beneficial if children’s case managers had the information needed to build a PCP. I hope we can follow through and write that into policy. That will take time, but if case managers had more knowledge, and we had more trainings with OADS, then case managers could do some of this work that MPF and ASM are doing.
-Parent: My son’s children’s case manager and adult case manager have both said that sometimes there’s not an answer in social work and human services. I get that. I’m frustrated, worn out, and traumatized from my son’s experience, and so is he. I remember calling Cullen many times saying I have no idea what to do. It’s heartbreaking. OCFS and OADS being more collaborative would be beneficial.
Teresa: We’re going to take your feedback and incorporate it into our strategies. We will continue to work with stakeholders’ groups. This will be a long-term strategy. We’ve worked on transition for years and systems change will not happen overnight. But we will continue to work on it and some things might be able to happen sooner versus later. We were thinking of providing an update to this group in six months. If you think of more feedback, please email Amanda at: [email protected].
Cullen: I will add that OCFS continuing to attend these meetings on a monthly basis, in addition to the six-month follow-up, is imperative. As you’re looking for stakeholder input, we would be able to tee up messages in the minutes or in emails asking for this feedback. In the portion of the agenda that pertains to OCFS, you could continue to poll the group and gather feedback.
Teresa: That’s great. I will bring Amanda with me each month as well to capture feedback provided.
Cullen: I wanted to point out that a warm hand-off is very important but one of the things that really stood out as one of the pertinent aspects of the Blueprint for Effective Transition is that transition can’t start early enough and can’t go late enough. For some reason we think of this one singular transition that happens at a specific age. These transitions start much earlier. And, if we can have that overlap to create a true continuum of care people will avoid the cliff of no services and falling through the cracks. There are a lot of transitions that occur over the course of one’s lifetime, and we need to be thoughtful to ensure that each of those are met with grace and support to ensure individuals and their families have the best experience possible. Parents have been fighting on the sidelines for years, and we have a lot of collective information and experience around the table to contribute.
Cullen: Earlier, a parent inquired about the bill in the Legislature that would have allowed parents to be hired by agencies, allowing them to be paid service providers for their children. The bill to which this parent referred is LD 1936: An Act To Allow Parents of Minors Who Qualify for In-home Personal Care under the MaineCare Program To Be Employed as Caregivers for Those Minors (click here for more information on this bill). This bill was carried over into any Special Session of the Legislature when it adjourned at the beginning of the pandemic. After that, it was reported out of the Health and Human Services Committee ought to pass as amended on 7/22. However, this bill is sitting in limbo, and will likely die since it appears the Governor is not going to reconvene the Legislature. I am curious if OCFS supports this concept of being able to hire and compensate family members for the services they provide to their children, those supports above and beyond that which a parent would generally provide.
Teresa: I will take that question to OCFS Director, Todd Landry, and follow-up so the response can be included in the minutes. (Click here for OCFS’ public testimony on the bill, which Teresa provided after the meeting for inclusion in the minutes.)
Teresa: Thank you so much for your feedback. You have all lived it and it’s so important for us to hear your experiences, concerns, and suggestions for improving transition. Thank you again, very much!
Cullen: Thank you for having this dialogue and for this transparency, it is greatly appreciated. And, thank you for continuing to keep this group updated and soliciting additional feedback as OCFS works to better transition for children moving into the adult system and beyond. Well done!
End Presentation (round of applause)
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: We have a lot of strategies for systems change on which we’re working. As you know we have the Section 28 stakeholders’ group. We’re also working on addressing the waitlists.
Cullen: A parent reached out to me regarding concerns about Section 28. I was hoping you give an update on Section 28 and its availability.
Teresa: There is still a waitlist for Section 28, depending on the area in the state in which you’re located. One of my colleagues is heading that up. There are on-going stakeholder group meetings regarding Section 28, but I don’t think there have been any major changes implemented.
Sheena: We had a stakeholder group gathering feedback regarding specialized Section 28 prior to this meeting.
Teresa: There’s a huge workforce shortage for all services, which affects Section 28 just as it does other waivers.
Sheena: There are virtual OCFS Child Welfare Forums occurring. There are two coming up, information for which can be found on our flyer (click here for more information).
(After the meeting Teresa followed up with additional information on Section 28:
Teresa: We are considering the inclusion of ID-only youth in eligibility for specialized RCS28;
Cullen: That would be terrific, thank you!
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Craig Patterson: There is a lot happening within OADS. Most of the people on this call know we’re going through a whole bunch of changes at the moment. Most importantly, Home and Community-Based Services (HCBS) Settings Rule changes, which really is just a huge amount of work. There is a lot involved, including aspects that potentially affect transition. We’re making quite a bit of progress, but we are struggling with some issues. One of those issues is individual rights and having us be in a place where our regulations and individual rights all line up, because right now they do not. We’re working on various pieces of that simultaneously. We continue with our HCBS stakeholder groups. We are also working through changes to guidance related to COVID, and some documents we’re putting out around that. I encourage folks to keep joining our every-other-Tuesday calls on COVID, at 3pm, there is a link on our website for more information. More OADS COVID-19 updates and related information can also be found on our website. We’re implementing changes with our crisis team. We’ll have more information on this coming out fairly soon, including information on our crisis hotline. We’ll be moving to our own centralized phone system. We’re trying to figure that out using four separate district numbers to eliminate confusion. This will allow us to have a crisis worker respond directly to crisis calls. We’re working through changes to our PCP process, as well as training and a manual connected to that. Folks from DRM and SUFU (Speaking Up For Us) have been directly involved with this process. We will be reaching out to Teresa, Sheena, and Amanda to see how we can work collaboratively with this transition work. I love the idea of having children’s services case managers and adult case managers work together. Transition has been a hot-topic issue. However, it also involves the Legislature, because more funds are needed to make this all work and allow for this collaboration. However, this collaboration if essential if we want to get to a lifelong services perspective, which is where we want to get inevitably.
-It was asked if the Communications Stakeholder Workgroup has started meeting.
Craig: The Communications Stakeholders Workgroup will either start meeting in January or it already started. I’ll get the information to Cullen to include in the minutes. That’s a great point though, we do have four workgroups: Communications; Quality Assurance and Quality Improvement, which will begin meeting in January; Community which has already started its work; and Innovation.
SMACT (Southern Maine Advisory Council on Transition)
Cullen: It has come to my attention that Kathy Adams is retiring at the end of the month. I wanted to wish her well!
Disability Rights Maine (DRM) Update:
Lauren Wille: We’re doing a lot around voting, ensuring people are informed about the election, their right to vote, and about accommodations available. We’ve held a lot of trainings on this, and I would encourage people to check out the voting section of the website, We’re also working on getting information out about the HCBS Settings Rule. We’re in the process of a creating a Zoom webinar, in partnership with SUFU, designed for self-advocates around what the HCBS Settings Rule means, what it requires, and some general information about HCBS. You can find additional upcoming trainings on our website (scroll down and events are listed at the bottom of the page on the right).
State Legislature Update:
Cullen: It is highly unlikely there will be a Special Session, especially with the election fast approaching. It remains up to the Governor to call the Legislature back, which she is very unlikely to do.
Laura Cordes – MACSP (Maine Association for Community Service Providers): (Laura could not attend today’s meeting but sent the following update in her absence: While there may not be significant cuts on the table for this current fiscal year, the incoming 130th Legislature will have an estimated $850 million hole to fill for the two year budget that they will be tasked to build when the session starts in December. So, we will have to be vigilant and organized to stave off cuts to services and supports. Additionally, we may be looking to emergency supplemental budget changes at the start of the session to stabilize the Direct Support Professionals as the state has done nothing to address the residential services wage rate that remains and will fall further below minimum wage when it increases again on January 1, 2021.
Cullen: It sounds like it will be a busy advocacy year for us. Voting is very important, as is educating people running for office and those who are elected on how the system works, what the shortfalls are, what your needs are, etc. so that Legislators have a good picture of priorities for people with ID/DD.
Kim Humphrey – Community Connect Maine: Now is a great time to introduce yourself to candidates running for office. Community Connect Maine now has a link to candidate addresses, an email template, pre-messaged and blank downloadable postcards online at our website (click here). Reach out and let Legislators and legislative candidates know that disability issues are important to members within their own communities. Disability Voters of Maine sent out a Disability Campaign Questionnaire to candidates running for office. (Click here for information on the Disability Voters of Maine, in partnership with Community Connect, Maine Disability Campaign Questionnaire.)
Federal & Housing Updates:
Cullen: On 9/30 Congress passed and the President signed a short-term, stop-gap Continuing Resolution, funding agencies at FY 20 levels through 12/11, averting a government shutdown. In addition to funding agencies at FY 20 levels through 12/11, the bill adds $8 billion in nutrition assistance programs. Everything else at the Federal level is on hold as we wait to see if Congress passes another stimulus package – which will be essential for states facing revenue shortfalls in their upcoming budgets as Maine is. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing instability. Congress is currently in negotiations on a fourth stimulus package, though there is not consensus on what needs to be included. There have been competing proposals, the House’s newly revised Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act and the Senate’s Health, Economic Assistance, Liability Protection and Schools (HEALS) Act. There is a push from advocates across the country for stimulus funding to include robust funding for $100B of rental assistance, and a large investment in sorely needed affordable housing through the passage of the Affordable Housing Credit Improvement Act of 2019 (S 1703/HR 3077). However, since Congress hasn’t been able to come to agreement, it appears that any additional stimulus funding may come after the election. The House passed a package of six spending bills, including T-HUD, for FY 21. This bill would provide a significant increase in funding for housing programs that serve low-income people and communities, and the bill includes two amendments which would block implementation of harmful HUD proposals. However, the Senate has not addressed a T-HUD bill for FY 21. It remains to be seen whether Congress will pass FY 21 funding bills as part of an omnibus funding bill before the current continuing resolution expires on 12/11, or if they will enact another short-term continuing resolution funding the government until the new Congress convenes in January. We will have to be poised to advocate for funding for Medicaid, housing, and services.
Announcements:
The next meeting will be on Monday, November 9, 2020, 12-2pm, via Zoom.
Featured Speaker: Jennifer Putnam, Executive Director, Waban.
Topic: Remote Monitoring – An innovative way to provide services.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
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 Speaker: Teresa Barrows, Children’s Behavioral Health Services (CBHS) Manager, Office of Child and Family Services-DHHS. www.maine.gov/dhhs/ocfs Topic: OCFS Update on Transition
Cullen: Today we have Teresa Barrows, CBHS Manager with OCFS to provide an update on their work on transition. As you know this group developed the Blueprint for Effective Transition, which contemplates the variety of transition’s throughout a person’s life, especially the transition from children’s services to the adult system. This group is very invested in bettering transition for people with ID/DD and we’re thrilled that it appears OCFS is using the Blueprint for Effective Transition as its roadmap. Thank you for being here!
Teresa Barrows: Thank you for having me! I wanted to introduce a few people I invited to join me for this presentation. The first is Sheena Bunnell, and I’ll let her introduce herself.
Sheena Bunnell: I’m a professor of economics at the University of Maine at Farmington. I’m also consulting with OCFS to assist Teresa facilitate stakeholder meetings to get a robust conversation going and receive feedback as we engage in this important work.
Teresa: Also in attendance is: Amanda Hodgkins, a case manager in my unit and I’ve asked her to join to take some notes for the feedback we receive; Geetike Chaudhary, who is also helping with our strategy; and Jessica Chow, new to OCFS having moved here from Seattle, who’s here today to get a feel for stakeholder meetings for our strategy and will be overseeing our new system of care grants.
Begin Presentation (Click here for the presentation)
Teresa: There are a lot of times we refer to the children’s world and the adult world, however, there doesn’t seem to be a good transition between them. This has resulted in people falling through the cracks. Our purpose today is to gather feedback from stakeholders as we start to develop the roadmap for transition age youth. Back in 2017 we worked for around 18 months with stakeholders and planned to adapt CBHS with a PCP (person-centered plan) process – we named it the CBHS Planning Process. Our hope was that we would put that into the TCM (Targeted Case Management) Rule and any other case coordination occurring, and it would be a standard process mirroring the adult PCP process. However, with the Administration at the time, this work didn’t move forward. We’re going to resurrect that and that’s where we’re going to incorporate pieces of the Blueprint for Effective Transition.
Discussion: Teresa and Sheena facilitated discussion by posing questions to which the group responded. Questions are in bold, feedback provided by participants are in italics, and responses to questions/comments are identified by name.
Question: What would have been helpful to you and your youth during your transition time?
-Parent/Maine Parent Federation (MPF): Case managers in schools do not have the information needed to assist families. Maine Parent Federation (MPF) receives calls from parents in a panic asking what they need to do. They don’t know how to make that transition from children’s to adult services – and it’s a huge leap. Having the children’s case managers be a little more well-versed in what the adult case managers know, and having the schools know they have to provide that information too would be helpful.
-Parent and former special educator: I have dual experience with transition. A few things stick in my mind, one of which is school personnel tend to be very knowledgeable about school based IEPs and DOE regulations, whereas the adult case managers know about the adult world. They are very siloed. There was a tendency to think that the work that needed to be done was being done by the other party – there wasn’t collaboration. There’s an entitlement of special education services and children’s case management, and the school system is incumbent upon them to identify needs and take a leadership role to ensure services are delivered appropriately. This gets turned on its head in the adult world. You’re floating in a new system, not understanding the system, and you as the parent or family member need to be the expert and advocate. That’s a massive transition for parents and families. Parents often go from depending on school-based case managers to community case managers in the adult world, but they’re not identical. I combined IEP and PCP meetings as soon as people were eligible for adult services. You really need quarterly meetings to stay as up to date as possible, at minimum for the last two years before students age out. I made sure everyone who needed to be around the table attended the meetings. After the IEP meeting, I would immediately call a PCP meeting and transition to that and address transition issues exclusively. It really built a system in which students and families knew the people around the table, so at the time of transition the only difference would be I wouldn’t be at the table, but the structure would be in place. This was very helpful for everyone involved. Getting the various case managers in the same room at the same time with the family was very, very useful. I’ve been a long-term advocate for there being a six to twelve month overlap in children’s and adult case management so that warm handoff can truly happen. At graduation time, one of the last pieces of paper is the Summary of Performance document. I’ve found that I saw the bare minimum included in them – test scores and evaluations, etc. I tried to turn that into a real two- to three-page summary of the student’s abilities, strengths, and needs so that everyone involved had a real snapshot of the individual. I also handed the family all of the various evaluations in a folder so that they had all of the needed documents for eligibility in one place.
-Parent/Autism Society of Maine (ASM): For me it was always around Voc Rehab and the system around that. I had some great Voc Rehab services but it’s not the same across the state. Many parents have stated that Voc Rehab wasn’t attending meetings, etc. Parents across the state aren’t being equitably served in this area and it’s a struggle for many families in transition. Voc Rehab is huge, because kids need skills training while they’re still in school and it’s not happening uniformly across the state. The Summary of Performance for my son was quite detailed, however generally in the public-school system they don’t understand the great importance of this document for people as they transition to life and services beyond high school in the adult world.
-Parent: My son has severe behavioral issues. When he was in children’s services he had been asked to leave and emergency discharged from group homes in Maine and ended up in New Hampshire until age 20. I remember looking at the Blueprint for Effective Transition and it made me realize adult services are not comprehensive. My son is in his fifth group home in four years. He spent a lot of time at Spring Harbor as a child. My son is not unique in these regards. Most of my son’s housemates don’t have family. I worry everyday about what will happen to my son when I’m no longer here. The areas on the Blueprint are not happening for my son. He has lost so much that he gained as a child. The system isn’t prepared for the number of people who will need residential placements. Not all, but some staff at group homes do the bare minimum. My son has a quality of life because of me. I’ve been told that adult services programs can’t hire staff. Children’s services are being cut. There was a bill in the Legislature for parents to be able to be employees of agencies so they can be reimbursed for service provision. This would be huge. I greatly appreciate DHHS asking people for feedback.
-Parent: My son has severe Autism. He’s in a good situation now. I started looking for information early, and it was very hard to find. I remember appreciating the conference on transition, where everything was laid out and I could talk to a bunch of different providers all in one place. Schools need to encourage parents to start looking early. Schools don’t realize how much parents have to do. It’s not easy.
Question: If you were to change one thing in the system in regard to transition what would it be?
-Parent: Some transitions could be better if adult agencies follow through with what children’s services created for support.
-Parent/ASM: If we had a system where children’s case managers could follow the child into the adult system, and the adult case managers start working with the child before they transition into adult services, transition would be far improved. Unless everyone is sitting at the same table, you’re not going to get that information.
-Parent and special educator: The warm handoff between children’s and adult case managers is key. Families establish close relationships with the children’s case manager and it’s hard to go through that change. You have to finesse that relationship piece, and school personnel are key to that. When you make that transition and the school personnel isn’t there and the children’s case manager isn’t there it’s a huge change. Think about one transition at a time. Before you lose school-based and children’s case management, transition to adult services so it’s less of a shock when you leave the school system.
-Parent: My son couldn’t do a good transition without the waiver. The school wanted to assist with that transition, but without having the waiver and knowing what was ahead, it was hard. You can’t set plans for the future without knowing what town your child is going to be in with the waiver. You can do more with the community if you plan ahead.
Question: When your child was transitioning did you have all of the information you needed?
-Parent and former special educator: When people discussed supported employment, I had no idea what that meant. When people discussed group homes, I didn’t know what that would look like, how my son would access the community, etc. I didn’t know what a day program looked like or what activities were involved. I’ve found that parents need very concrete information. As a parent I wanted to see something to have a tangible representation of what the services looked like so I could see how it would fit for my son.
-Parent/ASM: When my son was graduating, though he had a good transition, one thing did come up. We knew he was going to receive Section 29 for day hab. I got to visit the program. What they don’t tell you is that each day hab has its own policies. When he got there, they did an assessment and he was categorized as someone who needed two-on-one care. It’s important for families to understand that they may like a day hab, but their child may not be able to go there, or there may be a waitlist for their children based on their circumstances and needs. These services and policies are not the same across the board.
-Parent: In Portland, I still can’t find any program that’s more than one-to-three, and my son needs one-to-one. If someone can’t go to a day program and is unable to work, what does that mean for their quality of life? Options in the community are too limited.
Question: Was your school helpful in the process of transition? If you were to change one thing in the system in regard to transition what would it be?
-Parent/MPF: Schools want to do the best they can, but they don’t always have the information needed. There are a lot of agencies out there, including MPF, that strive to help parents and providers find the information they need. We get the door slammed in our face a lot in the schools. We’ve lived this experience. Schools and providers and doctors etc. ought to listen to parents and family members with this lived experience. Maine Parent Federation outreaches and provides brochures to pass along to families. The schools know the families that could use the extra support; if they were willing to pass along these flyers to families that would benefit it would be incredibly helpful. It’s telling that no one from DOE is here today; that’s part of the problem.
Cullen: This is an open meeting. We have had people from various school departments attend, but not representation from DOE. The more we can have key decision makers at the table, hearing this dialogue, the better the system will be improved. The system is siloed, and I’m hearing from the feedback today that the system is very fractured. As a parent I can tell you that there isn’t a roadmap that spells out exactly what you have to do and when. The more that people talk to one another, the more the system will be improved.
-Parent/ASM: If there aren’t decision makers around the table it won’t filter down. They need to participate. Transition to adulthood is a huge issue.
-Parent and former special educator: Parents come to the table completely overwhelmed. Having a son or daughter with significant needs is an act of love but it also dominates your entire life. You’re trying to get up to speed with the adult world of supports – it’s like drinking from a fire hose. Special educators are in the same kind of situation at school. You’re trying to mainstream your students, make sure all of the paperwork is done and in compliance. You’re working overtime just to make school happen for these kids. So, to get on a learning curve where you’re knowledgeable about things in the community, and the pros and cons of all the different kinds of support is a real heavy lift. The collaborative piece is essential. No one knows it all, you need to have all of the experts around the table. “I don’t know” is a great starting point for saying “let’s find out.”
-Parent: The hardest issue I’ve had over the past 52 years is trying to figure out 24-hour care. I felt like I was going to a bunch of used car salesmen. All of our kids are so different. No one wanted to admit that they didn’t really want my child, let alone they didn’t know how to take care of her. So, six months later I’d get the response that no one wanted to take care of my child. That long transition of people talking to each other would have helped as all voices would have been heard. No one would be criticized for saying “that’s not my expertise.” If agencies don’t say that and if a solution isn’t found the child loses out, hope and love is lost, and it’s rough. My daughter is confident with communicating with me remotely, even though she’s nonverbal, because of the quality of support she receives.
Teresa: A transition conference was mentioned. I keep thinking if it would be helpful to have transition information somewhere – on a website, or a place where you can go and look at it? Or if it’s more helpful to have people explain things versus just seeing it listed?
-Parent/ASM: There are individuals in place to help families navigate the system. But everyone is so different. A website would be helpful, but there needs to be someone there to help interpret it and apply the resources to people individually. A large packet of information just handed to parents is overwhelming.
-Parent/MPF: When I get a referral, I look at what the family needs. Then, I look at my list of family navigators and match them based on experience and knowledge for each individual situation. Sometimes issues come up and they need assistance with other things that navigator doesn’t feel comfortable helping with, so someone else will step in and assist. Having someone who has been there and lived it and knows their way around the system is imperative. We know these programs, but parents are overwhelmed. Parents don’t know where to look for the information they need. They need someone to say, “I think this would help you, here is a phone number.” We can help these families if we’re given the opportunity.
-Parent and former special educator: I partnered with MPF for trainings for years. We would get speakers around identified subjects and have families come in for trainings after work. The challenge was we had parents coming from Biddeford, Belfast, and Rockland to Brunswick because they were so starved for information. The system ought to contemplate the range of families its dealing with and their individualized needs. Some need face-to-face meetings, some prefer telephone etc. Families face their own challenges as well.
Cullen: We’re so lucky to have MPF, ASM, and Community Connect. One of the things this Coalition has done is create a timeline, which can be continually updated. More is more. Overwhelmed families are starved for information, and the more that’s out there and the easier it is to find the better. Feel free to send information to me so we can post it to the website, which is designed to be an information clearinghouse. Information helps people to settle and feel safer.
Teresa: It appears it would be beneficial if children’s case managers had the information needed to build a PCP. I hope we can follow through and write that into policy. That will take time, but if case managers had more knowledge, and we had more trainings with OADS, then case managers could do some of this work that MPF and ASM are doing.
-Parent: My son’s children’s case manager and adult case manager have both said that sometimes there’s not an answer in social work and human services. I get that. I’m frustrated, worn out, and traumatized from my son’s experience, and so is he. I remember calling Cullen many times saying I have no idea what to do. It’s heartbreaking. OCFS and OADS being more collaborative would be beneficial.
Teresa: We’re going to take your feedback and incorporate it into our strategies. We will continue to work with stakeholders’ groups. This will be a long-term strategy. We’ve worked on transition for years and systems change will not happen overnight. But we will continue to work on it and some things might be able to happen sooner versus later. We were thinking of providing an update to this group in six months. If you think of more feedback, please email Amanda at: [email protected].
Cullen: I will add that OCFS continuing to attend these meetings on a monthly basis, in addition to the six-month follow-up, is imperative. As you’re looking for stakeholder input, we would be able to tee up messages in the minutes or in emails asking for this feedback. In the portion of the agenda that pertains to OCFS, you could continue to poll the group and gather feedback.
Teresa: That’s great. I will bring Amanda with me each month as well to capture feedback provided.
Cullen: I wanted to point out that a warm hand-off is very important but one of the things that really stood out as one of the pertinent aspects of the Blueprint for Effective Transition is that transition can’t start early enough and can’t go late enough. For some reason we think of this one singular transition that happens at a specific age. These transitions start much earlier. And, if we can have that overlap to create a true continuum of care people will avoid the cliff of no services and falling through the cracks. There are a lot of transitions that occur over the course of one’s lifetime, and we need to be thoughtful to ensure that each of those are met with grace and support to ensure individuals and their families have the best experience possible. Parents have been fighting on the sidelines for years, and we have a lot of collective information and experience around the table to contribute.
Cullen: Earlier, a parent inquired about the bill in the Legislature that would have allowed parents to be hired by agencies, allowing them to be paid service providers for their children. The bill to which this parent referred is LD 1936: An Act To Allow Parents of Minors Who Qualify for In-home Personal Care under the MaineCare Program To Be Employed as Caregivers for Those Minors (click here for more information on this bill). This bill was carried over into any Special Session of the Legislature when it adjourned at the beginning of the pandemic. After that, it was reported out of the Health and Human Services Committee ought to pass as amended on 7/22. However, this bill is sitting in limbo, and will likely die since it appears the Governor is not going to reconvene the Legislature. I am curious if OCFS supports this concept of being able to hire and compensate family members for the services they provide to their children, those supports above and beyond that which a parent would generally provide.
Teresa: I will take that question to OCFS Director, Todd Landry, and follow-up so the response can be included in the minutes. (Click here for OCFS’ public testimony on the bill, which Teresa provided after the meeting for inclusion in the minutes.)
Teresa: Thank you so much for your feedback. You have all lived it and it’s so important for us to hear your experiences, concerns, and suggestions for improving transition. Thank you again, very much!
Cullen: Thank you for having this dialogue and for this transparency, it is greatly appreciated. And, thank you for continuing to keep this group updated and soliciting additional feedback as OCFS works to better transition for children moving into the adult system and beyond. Well done!
End Presentation (round of applause)
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: We have a lot of strategies for systems change on which we’re working. As you know we have the Section 28 stakeholders’ group. We’re also working on addressing the waitlists.
Cullen: A parent reached out to me regarding concerns about Section 28. I was hoping you give an update on Section 28 and its availability.
Teresa: There is still a waitlist for Section 28, depending on the area in the state in which you’re located. One of my colleagues is heading that up. There are on-going stakeholder group meetings regarding Section 28, but I don’t think there have been any major changes implemented.
Sheena: We had a stakeholder group gathering feedback regarding specialized Section 28 prior to this meeting.
Teresa: There’s a huge workforce shortage for all services, which affects Section 28 just as it does other waivers.
Sheena: There are virtual OCFS Child Welfare Forums occurring. There are two coming up, information for which can be found on our flyer (click here for more information).
(After the meeting Teresa followed up with additional information on Section 28:
Teresa: We are considering the inclusion of ID-only youth in eligibility for specialized RCS28;
- We considering adding RUBI Parenting Model/de-escalation techniques for parents of youth with ASD, are searching a comparable model for youth with ID-Only;
- We are considering the eligibility criteria changes to focus on youth with cognitive impairments and functional limitations—and trying to better understand the needs of youth with MH-only diagnoses so that any rule change doesn’t impact youth adversely; just exploring at this point.
- We are starting the weekly meetings this week with the Office of MaineCare to work on policy changes.)
Cullen: That would be terrific, thank you!
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Craig Patterson: There is a lot happening within OADS. Most of the people on this call know we’re going through a whole bunch of changes at the moment. Most importantly, Home and Community-Based Services (HCBS) Settings Rule changes, which really is just a huge amount of work. There is a lot involved, including aspects that potentially affect transition. We’re making quite a bit of progress, but we are struggling with some issues. One of those issues is individual rights and having us be in a place where our regulations and individual rights all line up, because right now they do not. We’re working on various pieces of that simultaneously. We continue with our HCBS stakeholder groups. We are also working through changes to guidance related to COVID, and some documents we’re putting out around that. I encourage folks to keep joining our every-other-Tuesday calls on COVID, at 3pm, there is a link on our website for more information. More OADS COVID-19 updates and related information can also be found on our website. We’re implementing changes with our crisis team. We’ll have more information on this coming out fairly soon, including information on our crisis hotline. We’ll be moving to our own centralized phone system. We’re trying to figure that out using four separate district numbers to eliminate confusion. This will allow us to have a crisis worker respond directly to crisis calls. We’re working through changes to our PCP process, as well as training and a manual connected to that. Folks from DRM and SUFU (Speaking Up For Us) have been directly involved with this process. We will be reaching out to Teresa, Sheena, and Amanda to see how we can work collaboratively with this transition work. I love the idea of having children’s services case managers and adult case managers work together. Transition has been a hot-topic issue. However, it also involves the Legislature, because more funds are needed to make this all work and allow for this collaboration. However, this collaboration if essential if we want to get to a lifelong services perspective, which is where we want to get inevitably.
-It was asked if the Communications Stakeholder Workgroup has started meeting.
Craig: The Communications Stakeholders Workgroup will either start meeting in January or it already started. I’ll get the information to Cullen to include in the minutes. That’s a great point though, we do have four workgroups: Communications; Quality Assurance and Quality Improvement, which will begin meeting in January; Community which has already started its work; and Innovation.
SMACT (Southern Maine Advisory Council on Transition)
Cullen: It has come to my attention that Kathy Adams is retiring at the end of the month. I wanted to wish her well!
Disability Rights Maine (DRM) Update:
Lauren Wille: We’re doing a lot around voting, ensuring people are informed about the election, their right to vote, and about accommodations available. We’ve held a lot of trainings on this, and I would encourage people to check out the voting section of the website, We’re also working on getting information out about the HCBS Settings Rule. We’re in the process of a creating a Zoom webinar, in partnership with SUFU, designed for self-advocates around what the HCBS Settings Rule means, what it requires, and some general information about HCBS. You can find additional upcoming trainings on our website (scroll down and events are listed at the bottom of the page on the right).
State Legislature Update:
Cullen: It is highly unlikely there will be a Special Session, especially with the election fast approaching. It remains up to the Governor to call the Legislature back, which she is very unlikely to do.
Laura Cordes – MACSP (Maine Association for Community Service Providers): (Laura could not attend today’s meeting but sent the following update in her absence: While there may not be significant cuts on the table for this current fiscal year, the incoming 130th Legislature will have an estimated $850 million hole to fill for the two year budget that they will be tasked to build when the session starts in December. So, we will have to be vigilant and organized to stave off cuts to services and supports. Additionally, we may be looking to emergency supplemental budget changes at the start of the session to stabilize the Direct Support Professionals as the state has done nothing to address the residential services wage rate that remains and will fall further below minimum wage when it increases again on January 1, 2021.
Cullen: It sounds like it will be a busy advocacy year for us. Voting is very important, as is educating people running for office and those who are elected on how the system works, what the shortfalls are, what your needs are, etc. so that Legislators have a good picture of priorities for people with ID/DD.
Kim Humphrey – Community Connect Maine: Now is a great time to introduce yourself to candidates running for office. Community Connect Maine now has a link to candidate addresses, an email template, pre-messaged and blank downloadable postcards online at our website (click here). Reach out and let Legislators and legislative candidates know that disability issues are important to members within their own communities. Disability Voters of Maine sent out a Disability Campaign Questionnaire to candidates running for office. (Click here for information on the Disability Voters of Maine, in partnership with Community Connect, Maine Disability Campaign Questionnaire.)
Federal & Housing Updates:
Cullen: On 9/30 Congress passed and the President signed a short-term, stop-gap Continuing Resolution, funding agencies at FY 20 levels through 12/11, averting a government shutdown. In addition to funding agencies at FY 20 levels through 12/11, the bill adds $8 billion in nutrition assistance programs. Everything else at the Federal level is on hold as we wait to see if Congress passes another stimulus package – which will be essential for states facing revenue shortfalls in their upcoming budgets as Maine is. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing instability. Congress is currently in negotiations on a fourth stimulus package, though there is not consensus on what needs to be included. There have been competing proposals, the House’s newly revised Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act and the Senate’s Health, Economic Assistance, Liability Protection and Schools (HEALS) Act. There is a push from advocates across the country for stimulus funding to include robust funding for $100B of rental assistance, and a large investment in sorely needed affordable housing through the passage of the Affordable Housing Credit Improvement Act of 2019 (S 1703/HR 3077). However, since Congress hasn’t been able to come to agreement, it appears that any additional stimulus funding may come after the election. The House passed a package of six spending bills, including T-HUD, for FY 21. This bill would provide a significant increase in funding for housing programs that serve low-income people and communities, and the bill includes two amendments which would block implementation of harmful HUD proposals. However, the Senate has not addressed a T-HUD bill for FY 21. It remains to be seen whether Congress will pass FY 21 funding bills as part of an omnibus funding bill before the current continuing resolution expires on 12/11, or if they will enact another short-term continuing resolution funding the government until the new Congress convenes in January. We will have to be poised to advocate for funding for Medicaid, housing, and services.
Announcements:
- Click here for information on Accessible Absentee Voting for People with Print Disabilities in Maine.
- Click here for information on DHHS’ Beneficiary Transportation Survey.
- Click here for information on Maine Parent Federation’s October 2020 events.
- Click here for information on the ASM Fall Conference.
The next meeting will be on Monday, November 9, 2020, 12-2pm, via Zoom.
Featured Speaker: Jennifer Putnam, Executive Director, Waban.
Topic: Remote Monitoring – An innovative way to provide services.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
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].