August 10, 2020
Minutes
Minutes
Attendees via Zoom: Representative Richard Farnsworth, Representative Patty Hymanson, Alli Vercoe, Angie Potter, Beth Morse, Betsy Mahoney, Betsy Morrison, Brenda Smith, Bryan Gordon, Cathy Dionne, David Cowing, Debbie Dionne, Ed & Suellen Doggett, Helen Hemminger, Holly Randall, J. Richardson Collins, Jamie Whitehouse, John Tabb, Julie Brennan, Jennifer Putnam, Karissa, Kristie Johnson, Laura Cordes, Lorraine DeFreitas, McKenzie Allen, Mark Kemmerle, Matt Hickey, Megan Salvin, Natalie Childs, Pamela Bird, Pete Plummer, Peter Stuckey, Ray Nagel, Robin Levesque, Sharon N, Staci Converse, Stacy Lamontagne, Susan, Teague Morris, Teresa Barrows, Vickey Rand, Cullen Ryan, and a few callers who did not identify themselves.
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: Representative Richard Farnsworth. Topic: Update on the Public Consulting Group (PCG) Study, with a more general discussion on services and housing for people with ID/DD to follow.
Cullen: Today we are going to have an exciting speaker and discussion. For those who don’t know Richard Farnsworth is a six-term Legislator who has been a hero to everyone involved with serving people with ID/DD. Dick has served all over the state, has a doctorate, and has served on many committees and put forth several pieces of legislation that has bettered the lives of people with ID/DD. He has a long career in this field, numerous awards, and is a celebrated member of this Coalition. I’m very excited to have you here, Dick. Your presentation will discuss the Public Consulting Group (PCG) study that has legislative oversight. Our discussion will likely range beyond that as well. Thank you for being here!
Representative Richard Farnsworth: Thank you for having me. In full disclosure I have to admit I don’t have my doctorate, I almost did; unfortunately, the statute of limitations has probably run out on that! Needless to say, Child Development Services (CDS) has been a major focus since 1992 when I came back to Maine, and even before that, and so it really has been one of those challenging issues in terms of, “how do you make a system work for the benefit of children with disabilities and their families?” That’s what the legislation intended to do. With various federal legislation that came along you have two aspects: Part C the 0-3-year old’s, and Part B the 3-5-year old’s. The objective was to take a look at the difference in the kind of services needed with these two age groups; the 0-3 population has much more family involvement, whereas the 3-5 group can be much more independent. But how do we do that in Maine? That’s been an issue that’s gone back and forth numerous times through multiple reorganizations.
Maine chose to make this happen through an Independent Education Unit (IEU), so essentially CDS is like a separate school district, which makes it challenging, and historically the Department of Education (DOE) has had very limited control. As a result, things have happened sometimes that they wouldn’t have been pleased about, but nonetheless they happened. For years we muddled through, always with the question of “how do we pay for the services?” The funding from the federal government doesn’t begin to come close to covering the demand, so it inevitably requires additional state money. As an IEU they don’t have the capacity to go to the taxpayers in the local towns and receive funding. It was an interesting conundrum that the creation of an IEU made, with the state filling in the gaps. Along the way, as with probably too many programs, CDS was backfilled, that is they would spend the money and then come back to the Legislature and say they need additional funding in order to break even. Of course, that went on for several years which created some real tension with the Legislature and Administration. We were left asking “is there a mechanism that can help us manage this?” Ultimately one way to address this is to not appropriate the additional money; that’s what happened towards the end of the Baldacci Administration and the beginning of the LePage Administration. The screws were put on the ability to deliver the services quite tightly. How do you manage that? You narrow the scope of eligibility, the amount of services received, and it begins to narrow the way in which you reduce the cost to manage the service. Then you create a waiting list. The federal government is very critical of a waiting list; they are clear that once someone is identified as being eligible for services there shouldn’t be significant time lost before receiving those services. This became an ongoing tension with CDS. And staff pay was too low, the money wasn’t there in order to pay people appropriately, people began to leave the system, and things were in pretty rough shape when the current Administration came on board. The funding issues were very critical. The organizational structures have been critical issues – how do we do this with an IEU? They’ve gone through various techniques, started with counties, then regions, then they collapsed the regions to make them much larger, but the problem was still there in terms of there wasn’t enough money to cover their costs – not just what they had narrowed their focus to do but also recognizing there was a large variety of individuals who should have been addressed in terms of evaluation and service delivery, but they were ruled out and left without services unless there was some intervention by medical staff able to prescribe therapies and bill Medicaid.
We also went through an interesting process. In the early years, the vast majority of the direct services were provided by independent providers. As the availability of those service began to get tighter CDS decided to get into service delivery themselves. As a result, they hired people to provide services, hired staff to deliver group early intervention services, the net result being there were a number of early childhood programs scattered over the various CDS sites as well as still maintaining the provider community which played a very important role. However, it did create some friction. Technically according to federal guidelines, the responsibility of CDS is early identification, then doing the assessment to see if they do indeed meet the eligibility standards, then they are supposed to refer those services as opposed to delivering those services themselves. This became a bone of contention around seven years ago when finally MACSP (Maine Association of Community Service Providers) raised the question and it was brought before the Legislature in terms of having our Legislative Oversight Group take a look at CDS, find out what they were doing, and was it consistent with the laws. The report came out basically saying CDS was over-stepping their bounds and they needed to take steps to divest themselves of some of the services they had gotten into. This has not been totally successful, but nonetheless that was the finding. Now, because this has been an ongoing battle, the Education Committee has gotten involved over the years, they have been constantly coming back trying to make this more effective, and essentially take steps in order to do what philosophically we wanted to do – broaden the child finding process to get a much better look at the population we should be serving, taking a look at the 0-3 population and providing a lot more family support, looking at the 3-5 year old’s and ensuring we have a maximum amount of inclusionary activities in the preschool programs to ensure they’re in a setting with typically developing kids, or a special needs program have typically developing kids brought in for an inclusive environment. We know that kids with special needs learn more from typically developing kids then they do from teachers – stimulation of language, motor activities, etc., are highly stimulated by having peers who can demonstrate appropriate kinds of behaviors. This aspect is extremely important. That doesn’t mean that the problems with CDS have gone away. The Administration and the Legislature helped to appropriate money to fill some of the gaps, likely not adequate but it was a substantial amount.
The second issue was that many states allow CDS services for the 3-5 yar old’s to be delivered by the local public schools. That was one thing the DOE under the LePage Administration put before us with legislative proposals to transfer these demands to the public-school system. Well, there were rumblings of discontent. The public schools felt like it was simply a cost-shift to them, giving the public schools the ability to say there will be a cost overrun and put it on the property taxpayers. I screamed bloody murder to be quite honest. I wrote a memo to the committee raising questions with the Department, identifying twenty or so issues that had to be addressed. Throughout the years, CDS had developed a great deal of intertwining with numerous organizations – providers, transportation systems, parents, the inter-relationships with the school systems, etc. These issues were not addressed in the Department’s proposed legislation. At that point, the 127th Legislature was able to pass some legislation that basically established a task force to study CDS and come up with ways in which we can make it function better, and recommendations about the best way to deliver services. As much as I would like to say the Legislature operates with knowledge and capacity, at the end of that Legislature The Speaker of the House appointed House members to the Task Force, but by the time we ended that legislative session the President of the Senate hadn’t appointed anyone. As a result, we didn’t have the appropriate appointments and the legislation just died. Needless to say, this was extremely frustrating. In the 128th Legislature we had to pass additional legislation, which still did not answer the questions in my memo – there was no good plan about what we were going to do, how long it would take, how much money it would cost, who was going to pay, etc. At that point we decided not to create another task force, but instead undertake research to examine exactly what CDS is, what it’s doing, how much everything costs, and the best service delivery methods for children and their families. We were able to get significant appropriations to pay for a study. We went out to bid and received only one bid. We had to spend some time with the contractors (PCG) and basically say we want to make sure you can do the job because we’ve been down this path before. We had some really good, frank conversations, and then looked at dividing the job into two pieces, the first phase of which was to look at CDS and all of the costs involved, with the second phase examining best practices around ultimately what will be the best way to deliver services. Phase 1 is due to be reported back on October 1st. Providers have been involved with in-depth reporting and documentation, especially around provider costs. CDS has been asked to do the same, including looking at staffing rosters. It’s very detailed and comprehensive. The team is working closely with the service providers. and working with other professional services such as PT, OT, speech therapy, etc. because they are important components as well. The other piece they’ve been looking at is MaineCare because it represents such an important part of the cost to deliver services. Many CDS services provided are billed to MaineCare. MaineCare is not a plush piggybank, and none of the services are delivered at a real cost, but it is a factor because the way in which MaineCare gets billed will be an important factor for the public schools if they are ultimately chosen to take on this responsibility. MaineCare for this population has long been a tussle. I can remember when MaineCare was the primary funder of all the Medicaid services. I can remember someone from DHHS who was involved in MaineCare services and she kept saying the DOE should be paying the seed costs. Well, the fact is none of these services are being delivered unless they are medically necessary. However, at some point along the line DHHS got their wish and MaineCare seed money was transferred to the DOE and it becomes very complex because they use that seed money to draw down the services delivered especially in the public schools. When reimbursement comes through, they can claw back the money. It’s a disincentive for schools to bill for MaineCare because the reimbursement doesn’t come close to the actual cost of services.
We’re hoping, and everything is on schedule, the first report will come back, focusing on the costs with good data from which we can draw. Hopefully there will be enough data for the Committee to make decisions about the next phase –recommendations for the best way to deliver services. The Education Committee has had a great Advisory Committee providing wonderful guidance for the study as it’s moved forward. When this report comes out in October, they will have had a chance to review the report and provide their input to the Education Committee in terms of their recommendations moving forward. The second phase of the report, should we decide to proceed, is due December 1st – that’s a very short time frame. But nonetheless it would give a presentation ultimately before the Committee on January 13, 2021, which would be the next Legislature. So, the 130th Legislature will be taking the next steps in terms of this study. Hopefully we’ll be able to come up with a system that takes down the barriers in the current system, provides the kind of support to families we’re supposed to be providing, provides the hours of services that will make service delivery effective. I know that the number of hours of service is recommended at 30-40 hours per week and that’s not being met now. We’re also looking at how we can more effectively integrate MaineCare as a funding mechanism to make this happen, not just with CDS but also with the public schools. And, recommendations about how we manage the 0-3 and 3-5 populations so we’re still looking at that separation. We’re also looking at how to reduce the trauma from one service delivery system to another, because that can be difficult for families to adjust to as well as the children, not to mention the system itself. On top of all this, we have an incredible problem with service availability. Speech pathology, OT, psychological services, etc. being delivered by appropriate, well-trained professionals is critical in Maine because we don’t have enough – plain and simple. When we’re talking about kids with special needs, how do we stretch the professionals we have far enough so we can deliver the needed services? So, we’ll also likely be talking about workforce development, attracting people from out of state, paying people well, and so on. We’ve had some rate increases, but the fact is we are still grossly underpaying people for the services being delivered. And of course, in the middle of all of this is the COIVD-19 pandemic, which has made it difficult for the researchers to get to people. Zoom has been the mechanism we’ve had to use to move this process along. But they are on schedule and we’re happy with the results thus far. There are folks on the Advisory Committee in attendance today who could fill in some blanks I may have missed.
Cullen: Thank you, this is a lot of wonderful, comprehensive information. You’ve touched on so many areas we’ve been discussing for months, the complexities of transition, having people stay in-state, the complexities of Medicaid, direct support professional (DSP) pay issues. This is all very interwoven with the many multifaceted complexities in the entire system of care for people with ID/DD.
Rep. Farnsworth: It really is. And, it’s the launching pad for kids into independence, hopefully. It’s well-known the earlier you are able to begin providing the best services, the better your ability to reduce the demand for additional services over time. It saves money for Special Education, for MaineCare, for various systems. But it’s a short-term investment for long-term gains, and you don’t find the gains very quickly. People have this instant gratification problem – we have to look beyond the two-year Legislatures.
Cullen: That totally fits, the idea of spending more money now saves a lot later. We see that a lot with transition. Parents see their children needing a certain level of services but that’s not met, so people’s skills regress and they need far more support down the road. I also want to add that folks’ experience with CDS is the first branch of the tree they touch when you discover your young child may have ID/DD. CDS is where that ball is picked up first, so how that experience goes sets the tone and trajectory – it’s very important.
Rep. Farnsworth: That’s federal law – CDS is intended to be the primary funnel for individuals to be evaluated and for disability determination. We’ve never been able to figure out how to integrate the pediatricians with CDS, and it’s an important vehicle to enrich services for families.
Cullen: Thank you for starting this dialogue. I would encourage folks to participate and engage in discussion with the many experts we have around the table today.
Discussion:
-A provider, who sits on the Advisory Committee, stated that throughout the years CDS has been severely under-funded for many reasons. So, they’re trying to calculate what the true costs are for these services. And since CDS has been so severely underfunded there are things that aren’t being paid for that need accounted for as well. MaineCare has taken on a lot of these costs for the treatment of these kids. Maine lacks some of the funding that a public school would give to a purpose, because the 0-3-year old population isn’t covered under the DOE umbrella. All of the work providers do such as creating education plans, holding transition meetings, reporting results, and all the educational work, once it becomes billable for MaineCare, DOE doesn’t pay anything else. Those are the uncaptured costs that need to be brought to life. The Education Committee was thanked for taking on this topic, and the HHS Committee as well because they’re deeply involved. This issue is multi-departmental. DOE and DHHS have stakes in this, but in the middle are these kids who need proper services. If this does go to the school system, then they will be responsible for those costs. The PCG research involves that kind of work because towns only want to do this if they’re fully funded. It’s quite complicated and the Committees have done a tremendous job.
Rep. Patty Hymanson: I’m Representative Patty Hymanson, House Chair of the Health and Human Services (HHS) Committee. Thank you for everything you’re saying, Dick. We are trying to bridge this. The HHS Committee has jurisdiction over childcare, and the Education Committee has jurisdiction over education. But this issue melds the two and deserves cross-conversations. Listening to everything in this meeting, it’s clear that has to come together. And, we have no money to spend. It will be a real challenge but everyone listening to one another is key right now because hope is not a strategy – we really need to figure things out. I’m glad to be here to listen to the conversation.
Rep. Farnsworth: In terms of the interconnection, it’s a very interesting challenge because for that kind of program you have to have licensing from DHHS, and certification from DOE. Because MaineCare is involved, for medically necessary service you have to keep separate documentation for those services, then for educational services you have to keep separate documentation. The amount of paperwork involved! Essentially at those age levels they’re interconnected anyway. What’s more important are outcomes not who is providing what services. What has frustrated me over the years is the inability for both departments to sit down and figure out how to do this well, create documentation to cover both effectively, because the amount of paperwork required is just enormous.
Rep. Hymanson: This is part of what drove me out of private practice! MaineCare is still a fee-for-service venture, and it’s an antiquated system, but I hear you.
-A provider stated that from a provider perspective it generally comes down to: Which services are education, and which are treatment for these 3-5-year old’s? This question is very common, because there are education plans and treatment plans in pre-school. The paperwork required is doubled, and the only payment is from MaineCare because the DOE doesn’t pay anything despite the work involved. It’s very difficult distinguishing them. Providers try to get the hours of services for each to equal. For K-12 kids it’s a no-brainer, but it’s a struggle with the pre-school kids. The norm is 30 hours of treatment, but the education plan is 15 hours, and there’s a push to mimic the treatment plan to the education plan which means kids would lose hours. Simplification is vital. The provider stated that is why he is sitting on the Advisory Council to the Education Committee. This conversation can’t be had if you don’t include what’s going on with DHHS and MaineCare because they are interwoven and it’s a joint effort for all kids with ID/DD.
Rep. Hymanson: Is there something the State can do to simplify the paperwork and meld the plans or is this a federal mandate?
-It was stated that the IEP is a federal document and the treatment plan is a federal document. Providers complete both but are only paid for one. For K-12 students the education costs are involved, but for the 3-5-year old group the only reimbursement is the fee-for-service. It’s a financial struggle for pre-schools. The general worry is that pre-schools are already losing significant money, and if this doesn’t improve 3-5-year old kids could get squeezed out due to lack of funding.
Peter Stuckey: I just have a couple of questions or suggestions to expand this further. It’s hard to even think about expansion because what you’re talking about is so enormous. But in the conversation, it would be great to have someone from the Taxation Committee involved in this process. There isn’t any money, but I think another way of framing it is there’s a lot of money but it’s not in the right places, not enough from the right people to put it where it needs to be. As we’re all learning about what ought to be there from the service side, I think the people in our government focusing most of their attention on the resource side ought to be invited, encouraged, required to be part of this conversation from the ground floor, so they really do understand this investment. With sufficient services provided in these early years, you know what’s needed in the elementary level, and you can predict what’s going to be needed in high school and when they become adults. You know who’s in the system, what can change is the level of services needed to sustain a good and healthy and progressive lifestyle. It strikes me that this is so huge, when we start to get down into it, it becomes even bigger, but it’s important to look around and ensure all of the people who need to be part of the conversation are part of it, and that includes Taxation and adult services. I got involved in this work listening to Cullen and others talking about having the resources to get the services people need, no more no less, and I don’t think we have a system that appreciates that and operates under that assumption yet. And, until we get there we’ll always be in some kind of a silo.
Rep. Farnsworth: You also need to take a look at workforce issues, because of the limited number of early childhood teachers, other professionals, and teachers in general. We have a major workforce issues in Maine.
Rep. Hymanson: DHHS is working on a lifetime waiver, this is very much a work in progress, but would help address some of this.
-A parent stated that she lived in various states and saw many approaches. She asked if the group has looked at other states regarding best practices to inform this work.
Rep. Farnsworth: That is part of the guidance we’ve given to PCG. Although, I will say that the unfortunate thing is nationally many of the states are experiencing the same issues we are in terms of not having adequate services or sufficient capacity. We are Maine, we are a little different, and it does represent some interesting challenges in terms of how we deliver services especially in terms of rural areas.
Mark Kemmerle – Maine Developmental Services Oversight and Advisory Board (MDSOAB): Some years ago, someone told me approximately 60-70% of the State’s budget was in Education, DHHS, and Corrections. It’s been a while but we’re still in a state with mass incarceration, there could be enormous savings in terms of revising these policies that could assist in redirecting money to DOE and DHHS.,
Rep. Farnsworth: I think you’re on target. Also, research indicates if we provide appropriate early-intervention we’ll actually reduce risk for correction-involvement later on in life. So, once again it’s that short-term investment for long-term gain. Can we as a State say yes, it’s worth spending the money now and wait to see the result? But I think you’re absolutely right.
Mark: I don’t know the statistics, but for non-violent convictions, for marijuana possession etc., just let them out!
Rep. Hymanson: I will say some of that has been done with the COVID-19 crisis.
-A parent and former special educator thanked Representatives Farnsworth and Hymanson for this information. He stated that he was a CDS board member, special education provider, and now involved in the adult system. He stated that the family interactions with service providers is a critical component. The amount of trust you have to develop across the system is huge – at the first entry into the system with CDS, working to transition kids into public schools, trusting the public schools can pick this up from CDS. In later work, such as high school to adult services transitions, families rely on service providers for guidance and support, and if that’s provided you facilitate discussions and encourage collaborations which create their own kind of synergy. If you don’t have that, and many families have had very negative experiences with all the systems, you really have to work hard to establish a level of trust. It’s equally critical in the public schools and even more critical in the adult system. Service providers in the adult system pick up that role if they’re doing services well. He stated that he hates reading the paper now to see former special education students now incarcerated, going into a very expensive system that could have been avoided if they had received appropriate services. It’s all about communication, collaboration, and developing relationships and trust.
Rep. Farnsworth: The statistics indicate that a high percentage of our adults incarcerated fall into the disabled population. If we can avoid that, channel it into a different, better model, it would make a huge difference.
-A parent stated that the group home model has been challenging as well. She stated that very few agencies that provide these services have parents on their boards, if they have them. Oversight in these homes appears to be minimal. It was also stated that the changes to the probate code regarding guardianship has been challenging as well. Another parent stated that any organization has to actively facilitate including family input. He stated his son isn’t capable of effectively advocating for his needs and relies on family supports and advocacy to ensure things are happening. We have an overburdened case management system, and it’s very challenging to provide the support and facilitation needed. Recognizing families for the knowledge and strengths they have will save grief and crisis in the long term.
Rep. Hymanson: One thing we discuss in HHS is the workforce having a career path. If you have direct support providers with a career path it becomes part of a culture. If you don’t have that, the culture can become more caregiving and rules oriented. We’ve been talking about that, how to build a career path for people and how to make it happen. How to work that into the psychology of helping people with their lives.
-A provider who is also a parent stated that her son’s future likely includes Section 21. Speaking with families with children in group homes there isn’t consistency from home to home, and families sometimes feel intimidated. Parents feel that their children are in the providers’ care, and they feel that these are just people working in the homes and aren’t invested. Then, you have so many who do a fantastic job. It’s not consistent. Families feel this and feel that if they bring their voice forward their child will pay the price. We need to bridge that gap between the homes and the parents. Parents want what’s best for their children. There’s the PCP, but there aren’t many people involved. A parent stated that in the past three and a half years there hasn’t been a house manager that’s stayed longer than a year, and that she had to be the one to bring new staff up to speed. A parent stated that well-run group homes make a huge difference. He stated his son’s group home has very supportive, well-trained staff, and he can be included in the community. What’s challenging is the turn-over rate of staff. Working in a group home is very hard work and people can make the same or more money doing far less complex, challenging work in other places. Just like no one person is the same, the services and residential providers are not all the same. However, parent and family involvement are critical aspects of the continuum of services.
Laura Cordes – MACSP (Maine Association for Community Service Providers): I want to note my appreciation to Representatives Farnsworth and Hymanson. I know without a Special Session and pending deficits, moving forward the comprehensive recommendations of the long-term care workforce commission that looked into many of the issues involved here will be very difficult. Representative Hymanson, I appreciate your work trying to move those recommendations forward.
Cullen: I want to thank all of you for that great discussion. And, I want to thank Representatives Farnsworth and Hymanson for being here, your knowledge, working to understand all of this, and all of the energy you have put into making the world better for people with ID/DD. I’m hopeful the Legislature will be able to reconvene, because I know how many hours you have all put in to pass bills that are waiting in limbo. Starting over from scratch would be quite disappointing. Anything we can do as a Coalition to help we stand at the ready to ensure this work wasn’t for naught.
Rep. Hymanson: For your advocacy efforts it might be advantageous to have a list of bills you care about that need to be addressed before the end of the session and have that on hand for discussion should you be asked. We’ve held many public hearings, work sessions, determined fiscal notes, and so on. So much work has gone into these bills. A lot of people think everything is pointless now due to COVID, but that’s not the case.
Cullen: That’s an excellent point, thank you! And, I want to give a special thanks to Representative Farnsworth, as this will be his last term in the Legislature. Thank you for your countless hours of hard work, devotion, and championing the needs of people with ID/DD throughout your entire career. We are all better for it, and you will be sorely missed in Augusta.
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Cullen: I’m aware that some key folks from OADS wanted to be here today but had scheduling conflicts. No one from OADS could be in attendance today, but they are on deck to present next month.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
(Teresa Barrows had to leave the meeting prior to being able to give an update. However, she included her update in the Zoom chat box, which was read aloud to all in attendance).
Teresa Barrows: My apologies; I have been called into an urgent work situation. Update: DHHS is in the process of creating a road map of strategies to improve youth transition to adulthood. We have included the Blueprint for Effective Transition in our discussions. We have started with DOE, DOL, DOC, DHHS, OADS, and BHS (Behavioral Health Services, formerly the Office of Substance Abuse and Mental Health Services). This work has just begun and there will be much opportunity for future stakeholder involvement utilizing the expertise of this group.
Cullen: This is wonderful to hear because transition remains critically important to ensure that people can transition from high school to adulthood, as well as all of the other transitions that occur throughout the lifespan.
Disability Rights Maine (DRM) Update:
Staci Converse: It’s nice to see everyone, at least virtually. Some quick updates: We’ve been doing a lot of trainings, all of which can be found on our website (scroll down to upcoming events). We held a training with OADS and SUFU about person-centeredness, including having visitors, accessing the community, etc., during the pandemic. There was a training on reasonable accommodations last week which will be posted on our website shortly. Next week there is another training to discuss issues around Special Education, and more information can be found on our website. We’ve focused a lot of our energy on trainings and putting them online. We continue to do telephone outreach with people.
Federal & Housing Updates:
Teague Morris: I'm Teague Morris, Outreach Director for Senator King. I produce weekly bulletins on three separate topics: low-income; seniors; and veteran policy issues. Each of these bulletins include links to relevant press releases, recent policy articles, webinars, events, resources, and a selection of funding opportunities. I also circulate a bi-monthly list of newly posted federal grants. If you'd like to see examples of each - or be added to any of these distribution lists - just e-mail me ([email protected]). Thanks for all you're doing!
Cullen: If you’re not on Teague’s email list, definitely email him so that you can stay up to date. We were fortunate to have Senator King at the last meeting; it was truly a treat. Thank you, Teague, for coordinating that, and for all you do!
On the federal level everything is on hold as we wait to see if Congress passes another stimulus package. The President released some Executive Orders last week, but what those will mean remains to be seen. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing stability. Congress is currently in negotiations on a fourth stimulus package. The House’s Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, would provide nearly $1 trillion to state and local governments to avert layoffs and $200 billion in hazard pay for essential workers. It also includes $1,200 direct payments to individuals. The legislation includes $100 billion in emergency rental assistance and more than $24 billion in other HUD funding, stressing the importance of Section 8 especially at this time. The Senate also released its phase four stimulus package, the “SMART” Act. Senator Collins along with Senators Bob Menendez, Bill Cassidy, Joe Manchin, Cory Booker, and Cindy Hyde Smith, introduced the State and Municipal Assistance for Recovery and Transition (SMART) Act, which would provide $500 billion in direct aid to state and local governments impacted by the pandemic. This would provide at least $2 billion to state, county, and municipal governments in Maine for coronavirus relief. In addition, the $1.25 billion already allocated to Maine through the CARES Act would become more flexible. There is a push from advocates across the country for the fourth stimulus package 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). Most recently, the Senate released its Health, Economic Assistance, Liability Protection and Schools (HEALS) Act, a $1 trillion proposal to provide the next round of economic stimulus. The bill provides about $3.3 billion for affordable housing which is much less than the over $130 billion included in the Heroes Act. The bill includes about $3.2 billion for current federal rental assistance recipients to help housing agencies cover increased costs during the health and economic crisis. However, the bill only provides $3.3 billion to assist those households living in public housing or receiving HUD vouchers or USDA rental assistance, and it doesn’t include emergency rental assistance for the millions of unassisted households facing evictions and homelessness during the pandemic. The proposal also fails to extend the federal moratorium on evictions that expired or to expand it to cover all renters. And, the proposal calls for cutting unemployment insurance (UI) payments for millions of low-wage workers who lost jobs during the pandemic, many of whom have used the benefits to stay housed. We’ve been in contact with Maine’s Delegation advocating for these critical resources, which would have a substantial positive effect on Maine’s affordable housing capacity. The Administration is still putting out proposed rule changes, most recently HUD released the proposed rule “Making Admission or Placement Determinations Based on Sex in Facilities Under Community Planning and Development Housing Programs”. This rule change would affect transgender and gender non-conforming people experiencing homelessness, limiting their ability to access emergency shelters and services.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): Many of the Committees went back to finish work on bills hanging in the balance, including the rate increase bill this group has been following closely. There’s no consensus among the parties to reconvene. Currently it seems highly unlikely there will be a Special Session, especially as the election gets closer. It remains up to the Governor to call the Legislature back, which she may not need to do. So, more to follow and I’ll keep you all updated as more information is known.
Other Business:
-It was asked if anyone had any thoughts on this group having an opinion about re-opening schools and priority for in-person learning for children with IEPs. Maine Children’s Alliance had a recent Op-ed about that in the Bangor Daily News regarding this.
Robin Levesque – Maine Parent Federation: We’ve been talking to families and there are a lot of mixed emotions about children going back to in-classroom learning. Most schools are looking at hybrid models, with the majority of schools giving families the option as to whether to come back to the classroom fully, select the hybrid model, or chose complete remote learning. We continue to hold trainings, the information for which is available on our website. If the school is giving you any indication that they’re not going to follow the IEP, reach out to Maine Parent Federation and DRM.
-It was stated that DOE is wrapping up finalizing the parent survey results, and they should be released very soon. This will provide great insight about how all families across the state feel about returning to schools. This will be disseminated to the Coalition when it is available.
The next meeting will be on Monday, September 14, 2020, 12-2pm, via Zoom.
Featured Speaker: Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. Topic: OADS Update and related discussion.
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].
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: Representative Richard Farnsworth. Topic: Update on the Public Consulting Group (PCG) Study, with a more general discussion on services and housing for people with ID/DD to follow.
Cullen: Today we are going to have an exciting speaker and discussion. For those who don’t know Richard Farnsworth is a six-term Legislator who has been a hero to everyone involved with serving people with ID/DD. Dick has served all over the state, has a doctorate, and has served on many committees and put forth several pieces of legislation that has bettered the lives of people with ID/DD. He has a long career in this field, numerous awards, and is a celebrated member of this Coalition. I’m very excited to have you here, Dick. Your presentation will discuss the Public Consulting Group (PCG) study that has legislative oversight. Our discussion will likely range beyond that as well. Thank you for being here!
Representative Richard Farnsworth: Thank you for having me. In full disclosure I have to admit I don’t have my doctorate, I almost did; unfortunately, the statute of limitations has probably run out on that! Needless to say, Child Development Services (CDS) has been a major focus since 1992 when I came back to Maine, and even before that, and so it really has been one of those challenging issues in terms of, “how do you make a system work for the benefit of children with disabilities and their families?” That’s what the legislation intended to do. With various federal legislation that came along you have two aspects: Part C the 0-3-year old’s, and Part B the 3-5-year old’s. The objective was to take a look at the difference in the kind of services needed with these two age groups; the 0-3 population has much more family involvement, whereas the 3-5 group can be much more independent. But how do we do that in Maine? That’s been an issue that’s gone back and forth numerous times through multiple reorganizations.
Maine chose to make this happen through an Independent Education Unit (IEU), so essentially CDS is like a separate school district, which makes it challenging, and historically the Department of Education (DOE) has had very limited control. As a result, things have happened sometimes that they wouldn’t have been pleased about, but nonetheless they happened. For years we muddled through, always with the question of “how do we pay for the services?” The funding from the federal government doesn’t begin to come close to covering the demand, so it inevitably requires additional state money. As an IEU they don’t have the capacity to go to the taxpayers in the local towns and receive funding. It was an interesting conundrum that the creation of an IEU made, with the state filling in the gaps. Along the way, as with probably too many programs, CDS was backfilled, that is they would spend the money and then come back to the Legislature and say they need additional funding in order to break even. Of course, that went on for several years which created some real tension with the Legislature and Administration. We were left asking “is there a mechanism that can help us manage this?” Ultimately one way to address this is to not appropriate the additional money; that’s what happened towards the end of the Baldacci Administration and the beginning of the LePage Administration. The screws were put on the ability to deliver the services quite tightly. How do you manage that? You narrow the scope of eligibility, the amount of services received, and it begins to narrow the way in which you reduce the cost to manage the service. Then you create a waiting list. The federal government is very critical of a waiting list; they are clear that once someone is identified as being eligible for services there shouldn’t be significant time lost before receiving those services. This became an ongoing tension with CDS. And staff pay was too low, the money wasn’t there in order to pay people appropriately, people began to leave the system, and things were in pretty rough shape when the current Administration came on board. The funding issues were very critical. The organizational structures have been critical issues – how do we do this with an IEU? They’ve gone through various techniques, started with counties, then regions, then they collapsed the regions to make them much larger, but the problem was still there in terms of there wasn’t enough money to cover their costs – not just what they had narrowed their focus to do but also recognizing there was a large variety of individuals who should have been addressed in terms of evaluation and service delivery, but they were ruled out and left without services unless there was some intervention by medical staff able to prescribe therapies and bill Medicaid.
We also went through an interesting process. In the early years, the vast majority of the direct services were provided by independent providers. As the availability of those service began to get tighter CDS decided to get into service delivery themselves. As a result, they hired people to provide services, hired staff to deliver group early intervention services, the net result being there were a number of early childhood programs scattered over the various CDS sites as well as still maintaining the provider community which played a very important role. However, it did create some friction. Technically according to federal guidelines, the responsibility of CDS is early identification, then doing the assessment to see if they do indeed meet the eligibility standards, then they are supposed to refer those services as opposed to delivering those services themselves. This became a bone of contention around seven years ago when finally MACSP (Maine Association of Community Service Providers) raised the question and it was brought before the Legislature in terms of having our Legislative Oversight Group take a look at CDS, find out what they were doing, and was it consistent with the laws. The report came out basically saying CDS was over-stepping their bounds and they needed to take steps to divest themselves of some of the services they had gotten into. This has not been totally successful, but nonetheless that was the finding. Now, because this has been an ongoing battle, the Education Committee has gotten involved over the years, they have been constantly coming back trying to make this more effective, and essentially take steps in order to do what philosophically we wanted to do – broaden the child finding process to get a much better look at the population we should be serving, taking a look at the 0-3 population and providing a lot more family support, looking at the 3-5 year old’s and ensuring we have a maximum amount of inclusionary activities in the preschool programs to ensure they’re in a setting with typically developing kids, or a special needs program have typically developing kids brought in for an inclusive environment. We know that kids with special needs learn more from typically developing kids then they do from teachers – stimulation of language, motor activities, etc., are highly stimulated by having peers who can demonstrate appropriate kinds of behaviors. This aspect is extremely important. That doesn’t mean that the problems with CDS have gone away. The Administration and the Legislature helped to appropriate money to fill some of the gaps, likely not adequate but it was a substantial amount.
The second issue was that many states allow CDS services for the 3-5 yar old’s to be delivered by the local public schools. That was one thing the DOE under the LePage Administration put before us with legislative proposals to transfer these demands to the public-school system. Well, there were rumblings of discontent. The public schools felt like it was simply a cost-shift to them, giving the public schools the ability to say there will be a cost overrun and put it on the property taxpayers. I screamed bloody murder to be quite honest. I wrote a memo to the committee raising questions with the Department, identifying twenty or so issues that had to be addressed. Throughout the years, CDS had developed a great deal of intertwining with numerous organizations – providers, transportation systems, parents, the inter-relationships with the school systems, etc. These issues were not addressed in the Department’s proposed legislation. At that point, the 127th Legislature was able to pass some legislation that basically established a task force to study CDS and come up with ways in which we can make it function better, and recommendations about the best way to deliver services. As much as I would like to say the Legislature operates with knowledge and capacity, at the end of that Legislature The Speaker of the House appointed House members to the Task Force, but by the time we ended that legislative session the President of the Senate hadn’t appointed anyone. As a result, we didn’t have the appropriate appointments and the legislation just died. Needless to say, this was extremely frustrating. In the 128th Legislature we had to pass additional legislation, which still did not answer the questions in my memo – there was no good plan about what we were going to do, how long it would take, how much money it would cost, who was going to pay, etc. At that point we decided not to create another task force, but instead undertake research to examine exactly what CDS is, what it’s doing, how much everything costs, and the best service delivery methods for children and their families. We were able to get significant appropriations to pay for a study. We went out to bid and received only one bid. We had to spend some time with the contractors (PCG) and basically say we want to make sure you can do the job because we’ve been down this path before. We had some really good, frank conversations, and then looked at dividing the job into two pieces, the first phase of which was to look at CDS and all of the costs involved, with the second phase examining best practices around ultimately what will be the best way to deliver services. Phase 1 is due to be reported back on October 1st. Providers have been involved with in-depth reporting and documentation, especially around provider costs. CDS has been asked to do the same, including looking at staffing rosters. It’s very detailed and comprehensive. The team is working closely with the service providers. and working with other professional services such as PT, OT, speech therapy, etc. because they are important components as well. The other piece they’ve been looking at is MaineCare because it represents such an important part of the cost to deliver services. Many CDS services provided are billed to MaineCare. MaineCare is not a plush piggybank, and none of the services are delivered at a real cost, but it is a factor because the way in which MaineCare gets billed will be an important factor for the public schools if they are ultimately chosen to take on this responsibility. MaineCare for this population has long been a tussle. I can remember when MaineCare was the primary funder of all the Medicaid services. I can remember someone from DHHS who was involved in MaineCare services and she kept saying the DOE should be paying the seed costs. Well, the fact is none of these services are being delivered unless they are medically necessary. However, at some point along the line DHHS got their wish and MaineCare seed money was transferred to the DOE and it becomes very complex because they use that seed money to draw down the services delivered especially in the public schools. When reimbursement comes through, they can claw back the money. It’s a disincentive for schools to bill for MaineCare because the reimbursement doesn’t come close to the actual cost of services.
We’re hoping, and everything is on schedule, the first report will come back, focusing on the costs with good data from which we can draw. Hopefully there will be enough data for the Committee to make decisions about the next phase –recommendations for the best way to deliver services. The Education Committee has had a great Advisory Committee providing wonderful guidance for the study as it’s moved forward. When this report comes out in October, they will have had a chance to review the report and provide their input to the Education Committee in terms of their recommendations moving forward. The second phase of the report, should we decide to proceed, is due December 1st – that’s a very short time frame. But nonetheless it would give a presentation ultimately before the Committee on January 13, 2021, which would be the next Legislature. So, the 130th Legislature will be taking the next steps in terms of this study. Hopefully we’ll be able to come up with a system that takes down the barriers in the current system, provides the kind of support to families we’re supposed to be providing, provides the hours of services that will make service delivery effective. I know that the number of hours of service is recommended at 30-40 hours per week and that’s not being met now. We’re also looking at how we can more effectively integrate MaineCare as a funding mechanism to make this happen, not just with CDS but also with the public schools. And, recommendations about how we manage the 0-3 and 3-5 populations so we’re still looking at that separation. We’re also looking at how to reduce the trauma from one service delivery system to another, because that can be difficult for families to adjust to as well as the children, not to mention the system itself. On top of all this, we have an incredible problem with service availability. Speech pathology, OT, psychological services, etc. being delivered by appropriate, well-trained professionals is critical in Maine because we don’t have enough – plain and simple. When we’re talking about kids with special needs, how do we stretch the professionals we have far enough so we can deliver the needed services? So, we’ll also likely be talking about workforce development, attracting people from out of state, paying people well, and so on. We’ve had some rate increases, but the fact is we are still grossly underpaying people for the services being delivered. And of course, in the middle of all of this is the COIVD-19 pandemic, which has made it difficult for the researchers to get to people. Zoom has been the mechanism we’ve had to use to move this process along. But they are on schedule and we’re happy with the results thus far. There are folks on the Advisory Committee in attendance today who could fill in some blanks I may have missed.
Cullen: Thank you, this is a lot of wonderful, comprehensive information. You’ve touched on so many areas we’ve been discussing for months, the complexities of transition, having people stay in-state, the complexities of Medicaid, direct support professional (DSP) pay issues. This is all very interwoven with the many multifaceted complexities in the entire system of care for people with ID/DD.
Rep. Farnsworth: It really is. And, it’s the launching pad for kids into independence, hopefully. It’s well-known the earlier you are able to begin providing the best services, the better your ability to reduce the demand for additional services over time. It saves money for Special Education, for MaineCare, for various systems. But it’s a short-term investment for long-term gains, and you don’t find the gains very quickly. People have this instant gratification problem – we have to look beyond the two-year Legislatures.
Cullen: That totally fits, the idea of spending more money now saves a lot later. We see that a lot with transition. Parents see their children needing a certain level of services but that’s not met, so people’s skills regress and they need far more support down the road. I also want to add that folks’ experience with CDS is the first branch of the tree they touch when you discover your young child may have ID/DD. CDS is where that ball is picked up first, so how that experience goes sets the tone and trajectory – it’s very important.
Rep. Farnsworth: That’s federal law – CDS is intended to be the primary funnel for individuals to be evaluated and for disability determination. We’ve never been able to figure out how to integrate the pediatricians with CDS, and it’s an important vehicle to enrich services for families.
Cullen: Thank you for starting this dialogue. I would encourage folks to participate and engage in discussion with the many experts we have around the table today.
Discussion:
-A provider, who sits on the Advisory Committee, stated that throughout the years CDS has been severely under-funded for many reasons. So, they’re trying to calculate what the true costs are for these services. And since CDS has been so severely underfunded there are things that aren’t being paid for that need accounted for as well. MaineCare has taken on a lot of these costs for the treatment of these kids. Maine lacks some of the funding that a public school would give to a purpose, because the 0-3-year old population isn’t covered under the DOE umbrella. All of the work providers do such as creating education plans, holding transition meetings, reporting results, and all the educational work, once it becomes billable for MaineCare, DOE doesn’t pay anything else. Those are the uncaptured costs that need to be brought to life. The Education Committee was thanked for taking on this topic, and the HHS Committee as well because they’re deeply involved. This issue is multi-departmental. DOE and DHHS have stakes in this, but in the middle are these kids who need proper services. If this does go to the school system, then they will be responsible for those costs. The PCG research involves that kind of work because towns only want to do this if they’re fully funded. It’s quite complicated and the Committees have done a tremendous job.
Rep. Patty Hymanson: I’m Representative Patty Hymanson, House Chair of the Health and Human Services (HHS) Committee. Thank you for everything you’re saying, Dick. We are trying to bridge this. The HHS Committee has jurisdiction over childcare, and the Education Committee has jurisdiction over education. But this issue melds the two and deserves cross-conversations. Listening to everything in this meeting, it’s clear that has to come together. And, we have no money to spend. It will be a real challenge but everyone listening to one another is key right now because hope is not a strategy – we really need to figure things out. I’m glad to be here to listen to the conversation.
Rep. Farnsworth: In terms of the interconnection, it’s a very interesting challenge because for that kind of program you have to have licensing from DHHS, and certification from DOE. Because MaineCare is involved, for medically necessary service you have to keep separate documentation for those services, then for educational services you have to keep separate documentation. The amount of paperwork involved! Essentially at those age levels they’re interconnected anyway. What’s more important are outcomes not who is providing what services. What has frustrated me over the years is the inability for both departments to sit down and figure out how to do this well, create documentation to cover both effectively, because the amount of paperwork required is just enormous.
Rep. Hymanson: This is part of what drove me out of private practice! MaineCare is still a fee-for-service venture, and it’s an antiquated system, but I hear you.
-A provider stated that from a provider perspective it generally comes down to: Which services are education, and which are treatment for these 3-5-year old’s? This question is very common, because there are education plans and treatment plans in pre-school. The paperwork required is doubled, and the only payment is from MaineCare because the DOE doesn’t pay anything despite the work involved. It’s very difficult distinguishing them. Providers try to get the hours of services for each to equal. For K-12 kids it’s a no-brainer, but it’s a struggle with the pre-school kids. The norm is 30 hours of treatment, but the education plan is 15 hours, and there’s a push to mimic the treatment plan to the education plan which means kids would lose hours. Simplification is vital. The provider stated that is why he is sitting on the Advisory Council to the Education Committee. This conversation can’t be had if you don’t include what’s going on with DHHS and MaineCare because they are interwoven and it’s a joint effort for all kids with ID/DD.
Rep. Hymanson: Is there something the State can do to simplify the paperwork and meld the plans or is this a federal mandate?
-It was stated that the IEP is a federal document and the treatment plan is a federal document. Providers complete both but are only paid for one. For K-12 students the education costs are involved, but for the 3-5-year old group the only reimbursement is the fee-for-service. It’s a financial struggle for pre-schools. The general worry is that pre-schools are already losing significant money, and if this doesn’t improve 3-5-year old kids could get squeezed out due to lack of funding.
Peter Stuckey: I just have a couple of questions or suggestions to expand this further. It’s hard to even think about expansion because what you’re talking about is so enormous. But in the conversation, it would be great to have someone from the Taxation Committee involved in this process. There isn’t any money, but I think another way of framing it is there’s a lot of money but it’s not in the right places, not enough from the right people to put it where it needs to be. As we’re all learning about what ought to be there from the service side, I think the people in our government focusing most of their attention on the resource side ought to be invited, encouraged, required to be part of this conversation from the ground floor, so they really do understand this investment. With sufficient services provided in these early years, you know what’s needed in the elementary level, and you can predict what’s going to be needed in high school and when they become adults. You know who’s in the system, what can change is the level of services needed to sustain a good and healthy and progressive lifestyle. It strikes me that this is so huge, when we start to get down into it, it becomes even bigger, but it’s important to look around and ensure all of the people who need to be part of the conversation are part of it, and that includes Taxation and adult services. I got involved in this work listening to Cullen and others talking about having the resources to get the services people need, no more no less, and I don’t think we have a system that appreciates that and operates under that assumption yet. And, until we get there we’ll always be in some kind of a silo.
Rep. Farnsworth: You also need to take a look at workforce issues, because of the limited number of early childhood teachers, other professionals, and teachers in general. We have a major workforce issues in Maine.
Rep. Hymanson: DHHS is working on a lifetime waiver, this is very much a work in progress, but would help address some of this.
-A parent stated that she lived in various states and saw many approaches. She asked if the group has looked at other states regarding best practices to inform this work.
Rep. Farnsworth: That is part of the guidance we’ve given to PCG. Although, I will say that the unfortunate thing is nationally many of the states are experiencing the same issues we are in terms of not having adequate services or sufficient capacity. We are Maine, we are a little different, and it does represent some interesting challenges in terms of how we deliver services especially in terms of rural areas.
Mark Kemmerle – Maine Developmental Services Oversight and Advisory Board (MDSOAB): Some years ago, someone told me approximately 60-70% of the State’s budget was in Education, DHHS, and Corrections. It’s been a while but we’re still in a state with mass incarceration, there could be enormous savings in terms of revising these policies that could assist in redirecting money to DOE and DHHS.,
Rep. Farnsworth: I think you’re on target. Also, research indicates if we provide appropriate early-intervention we’ll actually reduce risk for correction-involvement later on in life. So, once again it’s that short-term investment for long-term gain. Can we as a State say yes, it’s worth spending the money now and wait to see the result? But I think you’re absolutely right.
Mark: I don’t know the statistics, but for non-violent convictions, for marijuana possession etc., just let them out!
Rep. Hymanson: I will say some of that has been done with the COVID-19 crisis.
-A parent and former special educator thanked Representatives Farnsworth and Hymanson for this information. He stated that he was a CDS board member, special education provider, and now involved in the adult system. He stated that the family interactions with service providers is a critical component. The amount of trust you have to develop across the system is huge – at the first entry into the system with CDS, working to transition kids into public schools, trusting the public schools can pick this up from CDS. In later work, such as high school to adult services transitions, families rely on service providers for guidance and support, and if that’s provided you facilitate discussions and encourage collaborations which create their own kind of synergy. If you don’t have that, and many families have had very negative experiences with all the systems, you really have to work hard to establish a level of trust. It’s equally critical in the public schools and even more critical in the adult system. Service providers in the adult system pick up that role if they’re doing services well. He stated that he hates reading the paper now to see former special education students now incarcerated, going into a very expensive system that could have been avoided if they had received appropriate services. It’s all about communication, collaboration, and developing relationships and trust.
Rep. Farnsworth: The statistics indicate that a high percentage of our adults incarcerated fall into the disabled population. If we can avoid that, channel it into a different, better model, it would make a huge difference.
-A parent stated that the group home model has been challenging as well. She stated that very few agencies that provide these services have parents on their boards, if they have them. Oversight in these homes appears to be minimal. It was also stated that the changes to the probate code regarding guardianship has been challenging as well. Another parent stated that any organization has to actively facilitate including family input. He stated his son isn’t capable of effectively advocating for his needs and relies on family supports and advocacy to ensure things are happening. We have an overburdened case management system, and it’s very challenging to provide the support and facilitation needed. Recognizing families for the knowledge and strengths they have will save grief and crisis in the long term.
Rep. Hymanson: One thing we discuss in HHS is the workforce having a career path. If you have direct support providers with a career path it becomes part of a culture. If you don’t have that, the culture can become more caregiving and rules oriented. We’ve been talking about that, how to build a career path for people and how to make it happen. How to work that into the psychology of helping people with their lives.
-A provider who is also a parent stated that her son’s future likely includes Section 21. Speaking with families with children in group homes there isn’t consistency from home to home, and families sometimes feel intimidated. Parents feel that their children are in the providers’ care, and they feel that these are just people working in the homes and aren’t invested. Then, you have so many who do a fantastic job. It’s not consistent. Families feel this and feel that if they bring their voice forward their child will pay the price. We need to bridge that gap between the homes and the parents. Parents want what’s best for their children. There’s the PCP, but there aren’t many people involved. A parent stated that in the past three and a half years there hasn’t been a house manager that’s stayed longer than a year, and that she had to be the one to bring new staff up to speed. A parent stated that well-run group homes make a huge difference. He stated his son’s group home has very supportive, well-trained staff, and he can be included in the community. What’s challenging is the turn-over rate of staff. Working in a group home is very hard work and people can make the same or more money doing far less complex, challenging work in other places. Just like no one person is the same, the services and residential providers are not all the same. However, parent and family involvement are critical aspects of the continuum of services.
Laura Cordes – MACSP (Maine Association for Community Service Providers): I want to note my appreciation to Representatives Farnsworth and Hymanson. I know without a Special Session and pending deficits, moving forward the comprehensive recommendations of the long-term care workforce commission that looked into many of the issues involved here will be very difficult. Representative Hymanson, I appreciate your work trying to move those recommendations forward.
Cullen: I want to thank all of you for that great discussion. And, I want to thank Representatives Farnsworth and Hymanson for being here, your knowledge, working to understand all of this, and all of the energy you have put into making the world better for people with ID/DD. I’m hopeful the Legislature will be able to reconvene, because I know how many hours you have all put in to pass bills that are waiting in limbo. Starting over from scratch would be quite disappointing. Anything we can do as a Coalition to help we stand at the ready to ensure this work wasn’t for naught.
Rep. Hymanson: For your advocacy efforts it might be advantageous to have a list of bills you care about that need to be addressed before the end of the session and have that on hand for discussion should you be asked. We’ve held many public hearings, work sessions, determined fiscal notes, and so on. So much work has gone into these bills. A lot of people think everything is pointless now due to COVID, but that’s not the case.
Cullen: That’s an excellent point, thank you! And, I want to give a special thanks to Representative Farnsworth, as this will be his last term in the Legislature. Thank you for your countless hours of hard work, devotion, and championing the needs of people with ID/DD throughout your entire career. We are all better for it, and you will be sorely missed in Augusta.
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Cullen: I’m aware that some key folks from OADS wanted to be here today but had scheduling conflicts. No one from OADS could be in attendance today, but they are on deck to present next month.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
(Teresa Barrows had to leave the meeting prior to being able to give an update. However, she included her update in the Zoom chat box, which was read aloud to all in attendance).
Teresa Barrows: My apologies; I have been called into an urgent work situation. Update: DHHS is in the process of creating a road map of strategies to improve youth transition to adulthood. We have included the Blueprint for Effective Transition in our discussions. We have started with DOE, DOL, DOC, DHHS, OADS, and BHS (Behavioral Health Services, formerly the Office of Substance Abuse and Mental Health Services). This work has just begun and there will be much opportunity for future stakeholder involvement utilizing the expertise of this group.
Cullen: This is wonderful to hear because transition remains critically important to ensure that people can transition from high school to adulthood, as well as all of the other transitions that occur throughout the lifespan.
Disability Rights Maine (DRM) Update:
Staci Converse: It’s nice to see everyone, at least virtually. Some quick updates: We’ve been doing a lot of trainings, all of which can be found on our website (scroll down to upcoming events). We held a training with OADS and SUFU about person-centeredness, including having visitors, accessing the community, etc., during the pandemic. There was a training on reasonable accommodations last week which will be posted on our website shortly. Next week there is another training to discuss issues around Special Education, and more information can be found on our website. We’ve focused a lot of our energy on trainings and putting them online. We continue to do telephone outreach with people.
Federal & Housing Updates:
Teague Morris: I'm Teague Morris, Outreach Director for Senator King. I produce weekly bulletins on three separate topics: low-income; seniors; and veteran policy issues. Each of these bulletins include links to relevant press releases, recent policy articles, webinars, events, resources, and a selection of funding opportunities. I also circulate a bi-monthly list of newly posted federal grants. If you'd like to see examples of each - or be added to any of these distribution lists - just e-mail me ([email protected]). Thanks for all you're doing!
Cullen: If you’re not on Teague’s email list, definitely email him so that you can stay up to date. We were fortunate to have Senator King at the last meeting; it was truly a treat. Thank you, Teague, for coordinating that, and for all you do!
On the federal level everything is on hold as we wait to see if Congress passes another stimulus package. The President released some Executive Orders last week, but what those will mean remains to be seen. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing stability. Congress is currently in negotiations on a fourth stimulus package. The House’s Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, would provide nearly $1 trillion to state and local governments to avert layoffs and $200 billion in hazard pay for essential workers. It also includes $1,200 direct payments to individuals. The legislation includes $100 billion in emergency rental assistance and more than $24 billion in other HUD funding, stressing the importance of Section 8 especially at this time. The Senate also released its phase four stimulus package, the “SMART” Act. Senator Collins along with Senators Bob Menendez, Bill Cassidy, Joe Manchin, Cory Booker, and Cindy Hyde Smith, introduced the State and Municipal Assistance for Recovery and Transition (SMART) Act, which would provide $500 billion in direct aid to state and local governments impacted by the pandemic. This would provide at least $2 billion to state, county, and municipal governments in Maine for coronavirus relief. In addition, the $1.25 billion already allocated to Maine through the CARES Act would become more flexible. There is a push from advocates across the country for the fourth stimulus package 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). Most recently, the Senate released its Health, Economic Assistance, Liability Protection and Schools (HEALS) Act, a $1 trillion proposal to provide the next round of economic stimulus. The bill provides about $3.3 billion for affordable housing which is much less than the over $130 billion included in the Heroes Act. The bill includes about $3.2 billion for current federal rental assistance recipients to help housing agencies cover increased costs during the health and economic crisis. However, the bill only provides $3.3 billion to assist those households living in public housing or receiving HUD vouchers or USDA rental assistance, and it doesn’t include emergency rental assistance for the millions of unassisted households facing evictions and homelessness during the pandemic. The proposal also fails to extend the federal moratorium on evictions that expired or to expand it to cover all renters. And, the proposal calls for cutting unemployment insurance (UI) payments for millions of low-wage workers who lost jobs during the pandemic, many of whom have used the benefits to stay housed. We’ve been in contact with Maine’s Delegation advocating for these critical resources, which would have a substantial positive effect on Maine’s affordable housing capacity. The Administration is still putting out proposed rule changes, most recently HUD released the proposed rule “Making Admission or Placement Determinations Based on Sex in Facilities Under Community Planning and Development Housing Programs”. This rule change would affect transgender and gender non-conforming people experiencing homelessness, limiting their ability to access emergency shelters and services.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): Many of the Committees went back to finish work on bills hanging in the balance, including the rate increase bill this group has been following closely. There’s no consensus among the parties to reconvene. Currently it seems highly unlikely there will be a Special Session, especially as the election gets closer. It remains up to the Governor to call the Legislature back, which she may not need to do. So, more to follow and I’ll keep you all updated as more information is known.
Other Business:
-It was asked if anyone had any thoughts on this group having an opinion about re-opening schools and priority for in-person learning for children with IEPs. Maine Children’s Alliance had a recent Op-ed about that in the Bangor Daily News regarding this.
Robin Levesque – Maine Parent Federation: We’ve been talking to families and there are a lot of mixed emotions about children going back to in-classroom learning. Most schools are looking at hybrid models, with the majority of schools giving families the option as to whether to come back to the classroom fully, select the hybrid model, or chose complete remote learning. We continue to hold trainings, the information for which is available on our website. If the school is giving you any indication that they’re not going to follow the IEP, reach out to Maine Parent Federation and DRM.
-It was stated that DOE is wrapping up finalizing the parent survey results, and they should be released very soon. This will provide great insight about how all families across the state feel about returning to schools. This will be disseminated to the Coalition when it is available.
The next meeting will be on Monday, September 14, 2020, 12-2pm, via Zoom.
Featured Speaker: Betsy Hopkins, Associate Director, Developmental Disability and Brain Injury Services, DHHS-OADS. Topic: OADS Update and related discussion.
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].