February 11, 2019
Minutes
Minutes
Present: Bob Carpenter, Betsy Mahoney, Julie Brennan, Shannon George, Karen Keefe, Samantha Richard, Erin Rowan, Abbie Tanguay, Margaret Cardoza, Olivia Blom, Patrick Moore, Mark Kemmerle, Kim Humphrey, Diane Boas, Jennifer Putnam, Peter Stuckey, Staci Converse, Lydia Dawson, Vickey Rand, and Cullen Ryan. Via Zoom – (Bangor): Andrew Cassidy, Dixie Redmond, Maggie Hoffman. (Brunswick): Colleen Gilliam, Terri Cross, David Cowing, Debbie Dionne, and Teague Morris. (Winthrop): Cathy Dionne and Cheryl Stalilonis. (Auburn): Ann Bentley. (Kennebunk): Bryan Gordon. Misc. sites: Helen Hemminger, Kathy Adams, Steve Richard, and Staci Lamontagne.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen: For the past three years we’ve had lunch generously sponsored by Senscio Systems. We are looking for a new lunch sponsor for the Coalition meetings. The Coalition is a grassroots effort with no funding. If anyone has any connections or ideas, please let me know. I want to thank Senscio Systems for their several years of support. I also want to thank Jennifer Putnam for filling in for me last month, and also for stepping in to present today!
Scheduled Featured Speaker: LogistiCare. Topic: Update on LogistiCare and non-emergency transportation.
Cullen: We had LogistiCare scheduled to present today; however, during the middle of the day Friday they informed us that they’re attending a webinar and couldn’t attend. Since transportation appears to be an area with which this group has experienced difficulties, let’s take a few minutes to discuss it. How is transportation working?
-A self-advocate stated that drivers appear to be untrained and unattuned to the needs of people with intellectual/developmental disabilities (ID/DD). She stated that there have also been incidents in which people have been brought to the wrong location, or seemingly forgotten altogether. She stated that the brokerage system appears to have failed and has done so consistently. She stated that Maine would be better served by a system with more local control, with better trained staff and drivers who are more familiar with the needs of the individuals accessing the service.
Staci Converse (Disability Rights Maine): These problems are ones we see repeatedly. The number of times people have been dropped off at the wrong place is highly problematic and quite terrifying. Sadly, people have gotten accustomed to not getting to places on time. These are not isolated cases, they’re happening all over the state. Outside of non-emergency transportation, Margaret and I work with a larger self-advocacy group, and they’ve identified group homes placing a cap on the number of miles they can travel and dollars they can spend on transportation. We’re working on clarification on this, but that is another transportation-related problem. In regards to transportation and employment, people can only receive transportation to work if they receive paid supports at their job – non-emergency transportation is supposed to be to a MaineCare billable service. There are people who do so well in their job that they no longer need work supports, but in order to maintain transportation to and from their places of employment MaineCare requires some support on site. As we work with the new Administration to improve the system this should be on our list of things to address.
-A parent stated that people who have submitted complaints have been treated disrespectfully by the broker. Additionally, they have a vague policy regarding distance, so they can say “that’s too far.” There are issues with the lack of staff/driver training. Having the responsibility fall on the individual or family/guardian if an escort is needed is problematic also.
Jennifer Putnam: I think that in our area (Norway), we have a transportation subcontractor that has really started to develop a relationship with the local organizations. We’ve seen all of the problems that aren’t LogistiCare-level problems fall away. However, every time LogistiCare steps into the mix we run into problems again. The local way is the only way this is going to work.
-It was asked if there’s a definition regarding what those MaineCare billable services are, as this has come up in community meetings. It was stated that if we want people to be more active and included in their communities, transportation needs to be easily accessible.
Staci: Regarding MaineCare billable services, it’s not clear, and that lack of clarity has been a problem historically. There was a time before the brokers where all of this was paid through the waiver. As it transferred to the brokerage system there was a lack of clarity regarding the coverage program – if someone is in a group home is it the group home’s responsibility to provide transportation or LogistiCare’s? It’s not clear. Another big push in getting transportation reforms is through the Home and Community Based Services (HCBS) Settings Requirements Final Rule. That could be the framework in which we address this.
Peter Stuckey: I had a chance to speak with Rick McCarthy; he stated that the Transportation RFP was supposed to go out this past fall but didn’t and won’t until the new Administration reviews it. He stated that the transportation contract would be for five years and that the new MaineCare director is the holder of the reigns at this point.
Jennifer: The previous contract was for five years, so that makes sense.
Peter: Is the infrastructure still in place for the regional transportation system that preceded the brokerage system? Do the CAP (Community Action Program) agencies try to maintain some of this?
Jennifer: In our area it’s still there, in a diminished form – not built up the way that it would need to be.
Peter: My recollection is the reason the State made the shift to the brokerage system was because they received a letter from CMS (Centers for Medicare and Medicaid Services) saying that they could no longer bill a direct service rate for transportation, they would have to shift to an administrative rate. If the state had done this at that point in time it would have cost approximately $2 million, which in the general scheme of things isn’t a lot of money, certainly not insurmountable. I wonder, as the Department gears up for the next generation of transportation, if it could be possible to go back to a system that allowed for the collaboration and the combination of scarce transportation services around the state – to try to reweave that regional system which used to do a fairly decent job of maximizing resources and getting people around in a safe and accessible way. As the new Administration is pulling together the new RFP for transportation, it’s an ideal time to raise our voices and try to influence that process.
-It was suggested that today’s discussion be brought to the Office of MaineCare Services.
Lydia: You can also raise awareness about the issues with transportation as part of the OADS quarterly stakeholders’ meetings. The more the Department hears about issues surrounding transportation and the brokerage system, the more likely we are to effect change.
Cullen: This has been a great discussion, thank you! It appears we have some work to do to improve transportation on all fronts.
Featured Speaker: Jennifer Putnam, Executive Director, the Progress Center. progresscentermaine.org Topic: Update on the State Legislature and bills to watch this legislative session.
Cullen: As you know there are hundreds of bills that are submitted the first year of each biennium. In a cursory glance at bill titles for this legislative session, it’s noticeable that for the first time in a while there don’t appear to be any alarming bills that would jeopardize the entire safety net. With this, I hope that we’ll be able to concentrate on the ways in which we can improve the system, and legislative efforts related to that goal. The bills that Jennifer will go over in her presentation represent opportunities for the Coalition – a group comprised of a good representative sample of affected stakeholders which has the ability to raise its collective voice to advocate effectively for people with ID/DD in Maine. And, the Legislature tends to listen to us. These could be opportunities to move the system forward. Thank you again, Jennifer, for being willing to speak to the group on such short notice!
Jennifer Putnam: I’m passing around some of MACSP’s (Maine Association for Community Service Providers) basic recommendations for service reform – there is a one-pager on service reforms for adults with ID/DD and a one-pager on service reforms for children with ID/DD. Each of those sections has legislation connected to it. Some of the bills I will be discussing today aren’t out of the Revisor’s office, so they don’t have LD numbers or bill summaries/text yet. I will go through the recommendations in the handouts starting with the service reforms for adults with ID/DD:
Jennifer: As it’s currently written it wouldn’t be an add-on, it would look like a different service, but that would be up to the Department ultimately. The best-case scenario would be that the Department decides to adopt these rules and it wouldn’t have to go through the Legislature.
Staci: The key is how to do this without incentivizing a behavioral management plan; to do it in a way to get people what they need at the level they need it. The real question ought to be how do we get people what they need to access the services they need in the community?
Jennifer: One of the things that’s interesting is the difference in what we’re seeing now in terms of the skills people need in order to work with this population, versus what we’re getting because we’re paying people $11.22 per hour. We’re in a state that is raising minimum wage again, to $12 per hour, and there’s a bill submitted asking for it to increase to $15 per hour. I’m not here to say that’s either good or bad. However, we rely on direct care staff who don’t get paid enough to do what they’re asked and expected to do. We have such a low unemployment rate in Maine that we’re having an extremely difficult time hiring and retaining staff. For instance, 30% of my staff turned over this past year, and that’s low compared to more urban areas in Maine. When you get someone trained, that person truly begins to know the individual with whom they work, their strengths and their struggles, but then that staff person leaves and you’re starting all over from scratch.
Jennifer: That bill would develop a robust system of care. The concern is with the rules in place for PRTFs, and with crisis services going severely underfunded, these children would be brought back to the state and it would create an immediate waitlist for the PRTFs.
Staci: With the immense problems with residential services and HCBS, we also don’t know what the need truly is for a higher level of care.
Lydia Dawson (MACSP): Some of this data is in the Public Consulting Group (PCG) report. Even within Section 28 services, there’s the specialized service, which has access to BCBAs (Board Certified Behavioral Analysts), and regular Section 28 services – they’ve sectioned off the service. The Department has essentially denied all kids without ID/DD specialized services. The problem is that’s not how it works, and this prohibits kids with mental health needs from accessing behavioral services, and funnels kids with ID/DD to only getting behavioral services.
Jennifer: And, if we could see the number of kids underserved, it would be far worse.
Lydia: It’s also sad to be talking about kids in terms of hours. We need to be talking about what kids need in order to be included in the community.
Jennifer: One of the most troubling parts is that there are kids who are aging through the children’s system, going through school, and transitioning into adult services who have never received what they’ve needed in terms of supports. They will be at a severe disadvantage and need a lot more as adults as a result. This is completely avoidable.
In addition to these, there are a number of other bills we’re watching, some of which are similar or overlap. (Click here for the list of bill titles, bill summaries and LD numbers where available, and additional information provided by Jennifer where indicated.)
-It was asked if there will be a process of reconciliation for similar bills.
Jennifer: Yes, one way or another. Usually the bill sponsors will confer and if the intent and interests align, they will merge their bills. For example, there are a number of bills regarding minimum wage, provider rates, and dental care in Maine. One of the dental bills is LD 373, “An Act To Provide MaineCare Coverage for Dental Services to Adults with Intellectual Disabilities or Autism Spectrum Disorder”. It might make sense to integrate this bill into another bill which would provide MaineCare coverage for dental services for all MaineCare recipients. Additionally, there are bills we haven’t seen, but it doesn’t mean they won’t be considered, as only a small percentage of submitted bills have been finalized and have left the Revisor’s office. But even still, there are a lot of bills we’re following. One of the major ones, that hasn’t come out of the Revisor’s office yet would provide a rate review and adjustment every four or five years for every MaineCare section, so there would never be a time when we would need to ask the Legislature for rate increases.
Lydia: This bill would also add a rate review committee, which would function as a go-between, linking the community and the Department.
Jennifer: With this, if there’s an increase to the minimum wage the rates would shift upwards commensurate with the increase to the minimum wage.
Cullen: Thank you for being here today, Jennifer, this was a great discussion filled with a lot of important information!
End of presentation.
(Round of applause)
NE-ME LEND Program – Maine Coalition for Housing and Quality Services LEND Leadership Placement
Cullen: For the past few years we have been very fortunate to have at LEND leadership placements with the Coalition. In the past, this centered around the creation of and subsequent updates to the Service Timeline. This year, we have two LEND leadership placements, one of whom is here today at one of the remote sites! Cheryl has been working over the past few months with the Coalition and wanted an opportunity to speak with the group before she finalizes her work. Thank you for being here, Cheryl, and thank you for all of your work thus far!
Cheryl Stalilonis: Thank you! As Cullen said, my name is Cheryl and I’m a parent of a young adult with ID/DD. I’m very fortunate to be a LEND trainee this year. I have been assisting the Coalition with updating the housing resources information on the website. As I’m finalizing my work and updating the housing resources available in Maine, I wanted to have an opportunity to ask the group if anyone had any information on new and innovative housing options. I’m also interested if anyone has visions for the future regarding housing options for people with ID/DD in Maine. Please reach out to me via email with any information, as I want to ensure I have as complete a picture as possible for this project ([email protected]). Thank you!
Cullen: The Coalition has a comprehensive website that’s designed to be an information clearinghouse. We have concentrated a lot on the service aspect of the website; however, the housing aspect hasn’t been updated in a while and Cheryl is seeking to remedy that. Thank you for being here, Cheryl, and thank you for all of your work. We can’t wait to see the final product!
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads & Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: It doesn’t appear that we have anyone from DHHS in attendance today. I have a meeting with Commissioner Lambrew this Friday, in which I will be covering this Coalition and things the Department can do to better the system of care for people with ID/DD. In this meeting I will highlight having OADS and OCFS around this table to ensure an open dialogue. I’m hoping we’ll have updates from the Department at these meetings moving forward.
Teague Morris – Senator King’s Office: Senator King will be reintroducing the Senior Home Modification and Assistance Act. Initially, this bill only applied to seniors, but will now include persons with disabilities as well. I want to remind people that I send out periodic updates on federal grant opportunities, and I send periodic policy updates as well. If people are interested in being on either or both of these email lists, please contact me ([email protected]), as I would be happy to add you!
Cullen: Thank you very much, Teague, and thank you for being part of this Coalition! And, we want to pass along our immense gratitude to Senator King for taking a leadership role advocating on behalf of people with ID/DD, who often go unheard. He has been a champion for this population!
Lydia: We’re still waiting for the Department to release a lot of final rules/regulations. For instance, we have no idea if the Non-Emergency Transportation rules will be adopted. An area that has caused a lot of issues is Children’s Services not having promulgated Chapter II, Section 28 regulations. These regulations would explain how to use the new rate for BCBA services, which was approved back in November. However, since the Department has not issued regulations detailing how to use the services, most providers won’t offer the service at all.
-There was discussion regarding the new Department of Education (DOE) Commissioner, Pender Makin. A parent stated that she read comments Commissioner Makin made regarding keeping the federal government out of the classroom, which worried her as the federal government is what allows her child to be in the classroom. A special educator stated that Pender is an innovator and a systems thinker and meant the comment in a good way; having her at the helm of the DOE will be a huge change from the past eight years. He stated that Commissioner Makin has worked with special educators, directors, and children with disabilities who had a hard time in school in the past – this is what she’s been recognized for. He stated that he’s encouraged she’s in that role.
Lydia: The Department of Labor (DOL) Voc Rehab RFP is out, which is seeking four (4) or fewer Voc Rehab providers across the state. The Maine State Rehabilitation Council and MACSP sent letters of objection along with questions, expressing that limiting Voc Rehab providers would eliminate provider choice, which is protected by the Rehab Act. Many of us thought that this RFP would be pulled; however, the new DOL Commissioner, Laura Fortman, felt that it was good enough to move forward. The bidding process for the RFP ended on 2/7, so there should be an announcement soon. The other thought was that they won’t get anyone willing to bid for certain areas of the state, and if that happens they can’t move forward because they must have statewide coverage. Though, I’ve heard from a number of out of state providers who were planning on bidding for the whole state, so we’ll see what happens.
-It was stated that there is a bill (LD 464) which would reduce the amount of time you have to file for due process in cases where there’s been a unilateral private school placement from a public school, reducing that timeframe to 90 days. The public hearing is in front of the Education and Cultural Affairs Committee on Thursday 2/14, at 1:00pm in the Cross Building, Room 208. It was stated that one of the bill sponsors is Cathy Breen, which is surprising because this seems like a worrisome concept.
Helen Hemminger: OCFS has a released a second report from Public Consulting Group, which came out publicly on Friday, 2/1, about kids in the child welfare system (click here for the report).
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT meetings are held in Portland on the first Friday of each month. The most recent meeting was on Friday, 2/1, in which Christine Martin presented on using apps as assistive technology. Next month, on Friday, 3/1, we will have Roberta Lucas from DOE speaking about documentation for transition planning.
Federal Update:
Cullen: On Friday, 1/25 the President signed a short-term CR, funding the government until 2/15, ending the longest government shutdown in history. Congress still needs to enact full FY 19 funding for offices and Departments not yet fully funded, including HUD. If Congress doesn’t agree upon a budget deal, the government could shut down again on Friday.
Disability Rights Maine (DRM) Update:
Stacy Converse: As we reported last month, DRM is offering trainings on supported decision-making and how it and other less restrictive alternatives are incorporated into the new Probate Code, which goes into effect in July 2019 (Click here for the dates and locations of the trainings). Also, check out our new supported decision-making handbook.
The next meeting will be on March 11, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker and topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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 introduced themselves. Minutes from the last meeting were accepted.
Cullen: For the past three years we’ve had lunch generously sponsored by Senscio Systems. We are looking for a new lunch sponsor for the Coalition meetings. The Coalition is a grassroots effort with no funding. If anyone has any connections or ideas, please let me know. I want to thank Senscio Systems for their several years of support. I also want to thank Jennifer Putnam for filling in for me last month, and also for stepping in to present today!
Scheduled Featured Speaker: LogistiCare. Topic: Update on LogistiCare and non-emergency transportation.
Cullen: We had LogistiCare scheduled to present today; however, during the middle of the day Friday they informed us that they’re attending a webinar and couldn’t attend. Since transportation appears to be an area with which this group has experienced difficulties, let’s take a few minutes to discuss it. How is transportation working?
-A self-advocate stated that drivers appear to be untrained and unattuned to the needs of people with intellectual/developmental disabilities (ID/DD). She stated that there have also been incidents in which people have been brought to the wrong location, or seemingly forgotten altogether. She stated that the brokerage system appears to have failed and has done so consistently. She stated that Maine would be better served by a system with more local control, with better trained staff and drivers who are more familiar with the needs of the individuals accessing the service.
Staci Converse (Disability Rights Maine): These problems are ones we see repeatedly. The number of times people have been dropped off at the wrong place is highly problematic and quite terrifying. Sadly, people have gotten accustomed to not getting to places on time. These are not isolated cases, they’re happening all over the state. Outside of non-emergency transportation, Margaret and I work with a larger self-advocacy group, and they’ve identified group homes placing a cap on the number of miles they can travel and dollars they can spend on transportation. We’re working on clarification on this, but that is another transportation-related problem. In regards to transportation and employment, people can only receive transportation to work if they receive paid supports at their job – non-emergency transportation is supposed to be to a MaineCare billable service. There are people who do so well in their job that they no longer need work supports, but in order to maintain transportation to and from their places of employment MaineCare requires some support on site. As we work with the new Administration to improve the system this should be on our list of things to address.
-A parent stated that people who have submitted complaints have been treated disrespectfully by the broker. Additionally, they have a vague policy regarding distance, so they can say “that’s too far.” There are issues with the lack of staff/driver training. Having the responsibility fall on the individual or family/guardian if an escort is needed is problematic also.
Jennifer Putnam: I think that in our area (Norway), we have a transportation subcontractor that has really started to develop a relationship with the local organizations. We’ve seen all of the problems that aren’t LogistiCare-level problems fall away. However, every time LogistiCare steps into the mix we run into problems again. The local way is the only way this is going to work.
-It was asked if there’s a definition regarding what those MaineCare billable services are, as this has come up in community meetings. It was stated that if we want people to be more active and included in their communities, transportation needs to be easily accessible.
Staci: Regarding MaineCare billable services, it’s not clear, and that lack of clarity has been a problem historically. There was a time before the brokers where all of this was paid through the waiver. As it transferred to the brokerage system there was a lack of clarity regarding the coverage program – if someone is in a group home is it the group home’s responsibility to provide transportation or LogistiCare’s? It’s not clear. Another big push in getting transportation reforms is through the Home and Community Based Services (HCBS) Settings Requirements Final Rule. That could be the framework in which we address this.
Peter Stuckey: I had a chance to speak with Rick McCarthy; he stated that the Transportation RFP was supposed to go out this past fall but didn’t and won’t until the new Administration reviews it. He stated that the transportation contract would be for five years and that the new MaineCare director is the holder of the reigns at this point.
Jennifer: The previous contract was for five years, so that makes sense.
Peter: Is the infrastructure still in place for the regional transportation system that preceded the brokerage system? Do the CAP (Community Action Program) agencies try to maintain some of this?
Jennifer: In our area it’s still there, in a diminished form – not built up the way that it would need to be.
Peter: My recollection is the reason the State made the shift to the brokerage system was because they received a letter from CMS (Centers for Medicare and Medicaid Services) saying that they could no longer bill a direct service rate for transportation, they would have to shift to an administrative rate. If the state had done this at that point in time it would have cost approximately $2 million, which in the general scheme of things isn’t a lot of money, certainly not insurmountable. I wonder, as the Department gears up for the next generation of transportation, if it could be possible to go back to a system that allowed for the collaboration and the combination of scarce transportation services around the state – to try to reweave that regional system which used to do a fairly decent job of maximizing resources and getting people around in a safe and accessible way. As the new Administration is pulling together the new RFP for transportation, it’s an ideal time to raise our voices and try to influence that process.
-It was suggested that today’s discussion be brought to the Office of MaineCare Services.
Lydia: You can also raise awareness about the issues with transportation as part of the OADS quarterly stakeholders’ meetings. The more the Department hears about issues surrounding transportation and the brokerage system, the more likely we are to effect change.
Cullen: This has been a great discussion, thank you! It appears we have some work to do to improve transportation on all fronts.
Featured Speaker: Jennifer Putnam, Executive Director, the Progress Center. progresscentermaine.org Topic: Update on the State Legislature and bills to watch this legislative session.
Cullen: As you know there are hundreds of bills that are submitted the first year of each biennium. In a cursory glance at bill titles for this legislative session, it’s noticeable that for the first time in a while there don’t appear to be any alarming bills that would jeopardize the entire safety net. With this, I hope that we’ll be able to concentrate on the ways in which we can improve the system, and legislative efforts related to that goal. The bills that Jennifer will go over in her presentation represent opportunities for the Coalition – a group comprised of a good representative sample of affected stakeholders which has the ability to raise its collective voice to advocate effectively for people with ID/DD in Maine. And, the Legislature tends to listen to us. These could be opportunities to move the system forward. Thank you again, Jennifer, for being willing to speak to the group on such short notice!
Jennifer Putnam: I’m passing around some of MACSP’s (Maine Association for Community Service Providers) basic recommendations for service reform – there is a one-pager on service reforms for adults with ID/DD and a one-pager on service reforms for children with ID/DD. Each of those sections has legislation connected to it. Some of the bills I will be discussing today aren’t out of the Revisor’s office, so they don’t have LD numbers or bill summaries/text yet. I will go through the recommendations in the handouts starting with the service reforms for adults with ID/DD:
- Adult Services Reform Recommendation 1: Promulgate regulations to govern Crisis Services which establish and support capacity benchmarks, data collection, and training. The bill related to this is LR 1468, which MACSP submitted, which would ask the Department to promulgate rules around crisis services, because they’ve never been promulgated despite being statutorily mandated.
- Adult Services Reform Recommendation 2: Expand Section 21 and 29 services to include enhanced services and associated funding for individuals with high behavioral needs.
Jennifer: As it’s currently written it wouldn’t be an add-on, it would look like a different service, but that would be up to the Department ultimately. The best-case scenario would be that the Department decides to adopt these rules and it wouldn’t have to go through the Legislature.
Staci: The key is how to do this without incentivizing a behavioral management plan; to do it in a way to get people what they need at the level they need it. The real question ought to be how do we get people what they need to access the services they need in the community?
Jennifer: One of the things that’s interesting is the difference in what we’re seeing now in terms of the skills people need in order to work with this population, versus what we’re getting because we’re paying people $11.22 per hour. We’re in a state that is raising minimum wage again, to $12 per hour, and there’s a bill submitted asking for it to increase to $15 per hour. I’m not here to say that’s either good or bad. However, we rely on direct care staff who don’t get paid enough to do what they’re asked and expected to do. We have such a low unemployment rate in Maine that we’re having an extremely difficult time hiring and retaining staff. For instance, 30% of my staff turned over this past year, and that’s low compared to more urban areas in Maine. When you get someone trained, that person truly begins to know the individual with whom they work, their strengths and their struggles, but then that staff person leaves and you’re starting all over from scratch.
- Adult Services Reform Recommendation 3: Integrate the OIG’s joint recommendations into our current Adult Protective Services and Reportable Event regulations, including recommended model practices for incident management and investigation, incident management audits, mortality review, and quality assurance. We all remember the OIG (Office of Inspector General) report, however, only about 30-40% of the Health and Human Services Committee know about it. Representative Dale Denno has submitted two bills which would address this, “An Act To Enhance and Improve the Maine Developmental Services Oversight and Advisory Board” and a bill that would establish a mortality review panel, both of which were submitted in the last legislative session but were unsuccessful.
- Children’s Services Reform Recommendation 1: Establish a home and community-based waiver for children with IDD with a rate which supports the services children are determined eligible for. MACSP submitted a bill which would closely model MaineCare Section 32, which had been in place in Maine for a few years but never actualized or utilized. This bill would reinvigorate the Section 32 HCBS waiver for children, allowing the opportunity to take children with ID/DD out of Section 28 and 65 services and into services that are more broad and comprehensive. The waitlist for Section 28 services currently sits at around 458 children. There are subsections for the waitlist, Section 28 services for in-home care as well as for a higher level of services. All told, there are hundreds and hundreds of kids waiting for services. This would help alleviate these waitlists.
- Children’s Services Reform Recommendation 2: Establish a home and community-based waiver for children with IDD and fund the remaining waitlists prior to approving new institutional services. The rules were finalized around Children’s Psychiatric Residential Treatment Facilities (PRTFs). Thus far, no one has come forward to open a Children’s PRTF, that we’re aware of at least. However, all the data concludes that children with ID/DD have a higher rate of being placed in PRTFs if they exist. There’s another bill that has been submitted which would bring all of the children placed out of state back to Maine; this would be approximately 80 children.
Jennifer: That bill would develop a robust system of care. The concern is with the rules in place for PRTFs, and with crisis services going severely underfunded, these children would be brought back to the state and it would create an immediate waitlist for the PRTFs.
Staci: With the immense problems with residential services and HCBS, we also don’t know what the need truly is for a higher level of care.
Lydia Dawson (MACSP): Some of this data is in the Public Consulting Group (PCG) report. Even within Section 28 services, there’s the specialized service, which has access to BCBAs (Board Certified Behavioral Analysts), and regular Section 28 services – they’ve sectioned off the service. The Department has essentially denied all kids without ID/DD specialized services. The problem is that’s not how it works, and this prohibits kids with mental health needs from accessing behavioral services, and funnels kids with ID/DD to only getting behavioral services.
Jennifer: And, if we could see the number of kids underserved, it would be far worse.
Lydia: It’s also sad to be talking about kids in terms of hours. We need to be talking about what kids need in order to be included in the community.
Jennifer: One of the most troubling parts is that there are kids who are aging through the children’s system, going through school, and transitioning into adult services who have never received what they’ve needed in terms of supports. They will be at a severe disadvantage and need a lot more as adults as a result. This is completely avoidable.
In addition to these, there are a number of other bills we’re watching, some of which are similar or overlap. (Click here for the list of bill titles, bill summaries and LD numbers where available, and additional information provided by Jennifer where indicated.)
-It was asked if there will be a process of reconciliation for similar bills.
Jennifer: Yes, one way or another. Usually the bill sponsors will confer and if the intent and interests align, they will merge their bills. For example, there are a number of bills regarding minimum wage, provider rates, and dental care in Maine. One of the dental bills is LD 373, “An Act To Provide MaineCare Coverage for Dental Services to Adults with Intellectual Disabilities or Autism Spectrum Disorder”. It might make sense to integrate this bill into another bill which would provide MaineCare coverage for dental services for all MaineCare recipients. Additionally, there are bills we haven’t seen, but it doesn’t mean they won’t be considered, as only a small percentage of submitted bills have been finalized and have left the Revisor’s office. But even still, there are a lot of bills we’re following. One of the major ones, that hasn’t come out of the Revisor’s office yet would provide a rate review and adjustment every four or five years for every MaineCare section, so there would never be a time when we would need to ask the Legislature for rate increases.
Lydia: This bill would also add a rate review committee, which would function as a go-between, linking the community and the Department.
Jennifer: With this, if there’s an increase to the minimum wage the rates would shift upwards commensurate with the increase to the minimum wage.
Cullen: Thank you for being here today, Jennifer, this was a great discussion filled with a lot of important information!
End of presentation.
(Round of applause)
NE-ME LEND Program – Maine Coalition for Housing and Quality Services LEND Leadership Placement
Cullen: For the past few years we have been very fortunate to have at LEND leadership placements with the Coalition. In the past, this centered around the creation of and subsequent updates to the Service Timeline. This year, we have two LEND leadership placements, one of whom is here today at one of the remote sites! Cheryl has been working over the past few months with the Coalition and wanted an opportunity to speak with the group before she finalizes her work. Thank you for being here, Cheryl, and thank you for all of your work thus far!
Cheryl Stalilonis: Thank you! As Cullen said, my name is Cheryl and I’m a parent of a young adult with ID/DD. I’m very fortunate to be a LEND trainee this year. I have been assisting the Coalition with updating the housing resources information on the website. As I’m finalizing my work and updating the housing resources available in Maine, I wanted to have an opportunity to ask the group if anyone had any information on new and innovative housing options. I’m also interested if anyone has visions for the future regarding housing options for people with ID/DD in Maine. Please reach out to me via email with any information, as I want to ensure I have as complete a picture as possible for this project ([email protected]). Thank you!
Cullen: The Coalition has a comprehensive website that’s designed to be an information clearinghouse. We have concentrated a lot on the service aspect of the website; however, the housing aspect hasn’t been updated in a while and Cheryl is seeking to remedy that. Thank you for being here, Cheryl, and thank you for all of your work. We can’t wait to see the final product!
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads & Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: It doesn’t appear that we have anyone from DHHS in attendance today. I have a meeting with Commissioner Lambrew this Friday, in which I will be covering this Coalition and things the Department can do to better the system of care for people with ID/DD. In this meeting I will highlight having OADS and OCFS around this table to ensure an open dialogue. I’m hoping we’ll have updates from the Department at these meetings moving forward.
Teague Morris – Senator King’s Office: Senator King will be reintroducing the Senior Home Modification and Assistance Act. Initially, this bill only applied to seniors, but will now include persons with disabilities as well. I want to remind people that I send out periodic updates on federal grant opportunities, and I send periodic policy updates as well. If people are interested in being on either or both of these email lists, please contact me ([email protected]), as I would be happy to add you!
Cullen: Thank you very much, Teague, and thank you for being part of this Coalition! And, we want to pass along our immense gratitude to Senator King for taking a leadership role advocating on behalf of people with ID/DD, who often go unheard. He has been a champion for this population!
Lydia: We’re still waiting for the Department to release a lot of final rules/regulations. For instance, we have no idea if the Non-Emergency Transportation rules will be adopted. An area that has caused a lot of issues is Children’s Services not having promulgated Chapter II, Section 28 regulations. These regulations would explain how to use the new rate for BCBA services, which was approved back in November. However, since the Department has not issued regulations detailing how to use the services, most providers won’t offer the service at all.
-There was discussion regarding the new Department of Education (DOE) Commissioner, Pender Makin. A parent stated that she read comments Commissioner Makin made regarding keeping the federal government out of the classroom, which worried her as the federal government is what allows her child to be in the classroom. A special educator stated that Pender is an innovator and a systems thinker and meant the comment in a good way; having her at the helm of the DOE will be a huge change from the past eight years. He stated that Commissioner Makin has worked with special educators, directors, and children with disabilities who had a hard time in school in the past – this is what she’s been recognized for. He stated that he’s encouraged she’s in that role.
Lydia: The Department of Labor (DOL) Voc Rehab RFP is out, which is seeking four (4) or fewer Voc Rehab providers across the state. The Maine State Rehabilitation Council and MACSP sent letters of objection along with questions, expressing that limiting Voc Rehab providers would eliminate provider choice, which is protected by the Rehab Act. Many of us thought that this RFP would be pulled; however, the new DOL Commissioner, Laura Fortman, felt that it was good enough to move forward. The bidding process for the RFP ended on 2/7, so there should be an announcement soon. The other thought was that they won’t get anyone willing to bid for certain areas of the state, and if that happens they can’t move forward because they must have statewide coverage. Though, I’ve heard from a number of out of state providers who were planning on bidding for the whole state, so we’ll see what happens.
-It was stated that there is a bill (LD 464) which would reduce the amount of time you have to file for due process in cases where there’s been a unilateral private school placement from a public school, reducing that timeframe to 90 days. The public hearing is in front of the Education and Cultural Affairs Committee on Thursday 2/14, at 1:00pm in the Cross Building, Room 208. It was stated that one of the bill sponsors is Cathy Breen, which is surprising because this seems like a worrisome concept.
Helen Hemminger: OCFS has a released a second report from Public Consulting Group, which came out publicly on Friday, 2/1, about kids in the child welfare system (click here for the report).
Southern Maine Advisory Council on Transition (SMACT):
Kathy Adams: SMACT meetings are held in Portland on the first Friday of each month. The most recent meeting was on Friday, 2/1, in which Christine Martin presented on using apps as assistive technology. Next month, on Friday, 3/1, we will have Roberta Lucas from DOE speaking about documentation for transition planning.
Federal Update:
Cullen: On Friday, 1/25 the President signed a short-term CR, funding the government until 2/15, ending the longest government shutdown in history. Congress still needs to enact full FY 19 funding for offices and Departments not yet fully funded, including HUD. If Congress doesn’t agree upon a budget deal, the government could shut down again on Friday.
Disability Rights Maine (DRM) Update:
Stacy Converse: As we reported last month, DRM is offering trainings on supported decision-making and how it and other less restrictive alternatives are incorporated into the new Probate Code, which goes into effect in July 2019 (Click here for the dates and locations of the trainings). Also, check out our new supported decision-making handbook.
The next meeting will be on March 11, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker and topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
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].