March 12, 2018
Minutes
Minutes
Present: Peter Stuckey, Melissa Grabier, Jennifer Brooking, Joanna Bulger, Margaret Cardoza, Paula Matlins, Jerry Silbert, Abbie Tanguay, Nell Brimmer, Suzanne Burke McKay, Lisa Klessens, Bryan Gordon, Rachel Dyer, Representative Dale Denno, Amy Moller, Ian Porterfield, Anita LaBerge, Chip MacGowan, Lydia Dawson, Kathy Adams, Mary Chris Semrow, David Cowing, Emily Melo, Katie Bennett, Jennifer Putnam, Luc Nya, Jamie Whitehouse, Sanchia Snyder, Pamela Belisle, Bob Duranleau, Patrick Moore, Cullen Ryan, and Vickey Rand. Via Zoom – (Bangor): Steve Johnson. (Sanford): Brenda Smith and Stephanie Galeuchia. (Winthrop): Cathy Dionne and Ann Long. (Auburn): Ann Bentley. (Brunswick): Ray Nagel, Holly Randall, and Nonny Soifer. (Farmington): Darryl Wood and Kristin McPherson. (Kittery): Dennis and Debbie Dean. (Waterville): Pam Cairnie.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Featured Speaker: Pam Belisle and Bob Duranleau, Shared Living Coordinators, Group Main Stream (GMS). gmsme.org Topic: An overview of Shared Living, an eligible service under Section 29.
Cullen: The recent changes to Section 29 help bridge the gap for people who need more support than Section 29 previously offered. For some, expanded Section 29 services may meet their needs sufficiently, and they may no longer require the comprehensive services provided under Section 21, while others will have their needs better met while waiting for a Section 21 offer. This group did a lot of work to convince the Legislature that expanding Section 29 was advantageous. Today we’re joined by Representative Dale Denno and former Representative Peter Stuckey, both of whom were essential in ensuring that the expansion of Section 29 services came to fruition. Our speakers today are Pam Belisle and Bob Duranleau from Group Main Stream. Pam and Bob are going tell us about shared living and how that plays into the expanded Section 29 options. Thank you both for being here today.
Bob Duranleau: Thank you for having us, and for your work to make this happen.
Begin Presentation (Click here to view the presentation)
Discussion:
-It was asked approximately how much the daily stipends are.
Bob: Depending on the agency, it could fall between $85 and $100 per day. There are many different factors at play. The administrative agency, which serves as a pass-through, would bill MaineCare for services, and pass it on to the shared living provider through the stipend. The agency would have a contract with the shared living provider, and the shared living provider would also have a contract with the individual and/or the guardian.
Peter Stuckey: Looking into shared living was one of my first exposures to this world. We found that the level of services provided by shared living providers, as well as the oversight provided by the administrating agencies, varied greatly. And, back then there was only one rate.
Bob: That’s a really good observation, and that’s why the stipend rate differs. When you first complete an intake, there’s an in-depth assessment, which includes health and safety questions such as how long the individual can be alone, fire safety, first aid, and so on. There are people who only need support during the evenings and at night; the stipend in these situations might be on the lower end. Whereas for someone who needs more support during the day, such as help with activities of daily living, the stipend might be on the higher end.
Peter: Does the State pay the agencies based on acuity?
Bob: The State has a rate they pay the agencies per day, which was recently increased, though the increase may sunset at the end of the fiscal year.
Pam Belisle: Agencies determine the daily stipend. Group Main Stream ranges from $97 to $100. It’s also up to the agency how much goes directly to the provider and what stays with the agency for its oversight.
Peter: It appears there’s a wide range of needs and expectations from shared living. It seems to me the $15 difference in the stipend rate isn’t well-matched to that variance.
-It was asked if the shared living model works for people who need 24/7 support.
Bob: It’s really an individualized model. We have some folks with very high needs who do very well in shared living. It’s very individualized and that’s why it’s so important to have well-matched shared living providers.
-Another shared living provider in the room stated that there’s also an enhanced rate available, which requires a separate process and application.
-It was stated that kids with Autism who have congenital heart defects need surgical approval for dental checkups, 90-95% of whom also have gastrointestinal issues, further complicating medical matters. It was asked if shared living providers help with access to medical alternatives.
Pam: With shared living, the responsibility to look into and pursue what’s best for the individual medically is still up to the guardian.
-It was stated that alternative medical practices that address this are sorely lacking in Maine.
Bob: It’s an exciting change to be able to offer shared living as an option for people receiving Section 29 services.
Pam: When I talk to folks about Section 21 versus Section 29, I frame it as Section 21 being like Willy Wonka’s golden ticket, you get it all; whereas Section 29 is limited, you don’t get it all. We’re still continuing to advocate for more. Section 29 services are better and more encompassing than they previously were, but Section 29 still caps out at $52,425 per year. If shared living is utilized 24/7, 365 days a year, it leaves approximately $1,000 per year for community supports. You don’t have to choose one or the other, but with the cap it’s still limited. For shared living, we have to prove medical necessity. Approvals are coming through more frequently for applications that request authorization for full-time shared living (24/7/365). Many of the applications are from families already providing the service, just not in a professional capacity, but it doesn’t mean it’s going to get approved. For situations where the majority of the Section 29 cap is going towards Shared Living, some people are choosing to pay for community support services out-of-pocket.
- It was asked what the difference is between a group home and a shared living arrangement.
Bob: With shared living you’re living with a family, you’re welcomed into the homes as part of the household. You have the opportunity to meet with potential shared living providers to see if they’re a good match for your needs and desires. Group homes are staffed homes, usually shared with other people receiving services, with staff hired and paid by an agency.
-It was stated that in some circumstances shared living doesn’t feel autonomous, rather it feels like an “adoptive parent” environment, which can be constraining.
Pam: The shared living model is designed for the individual to have increased autonomy. If this isn’t occurring than the individual or guardian ought to bring this to the oversight agency’s attention, and/or to the case manager.
Bob: One thing we haven’t discussed yet is the role of the case manager. Case managers are required to visit shared living providers’ homes and use the shared living review tool. The things you’re mentioning, though perhaps they could be reworked, are things that are covered in that tool.
-It was stated that it’s difficult for people to speak up.
Jennifer Putnam: This has been a concern that family members have mentioned, especially since shared living was added into Section 29 eligible services. We’re talking about family members now playing a third role when they’re the shared living provider. It’s a huge ask for people to learn to draw those lines between parent and provider. This is incredibly difficult and we haven’t seen any additional training, beyond the standard shared living training, specific to that issue for parents/family members.
Pam: At this point it’s the responsibility of the shared living coordinator to relay that information. People applying to be shared living providers need to know that their role does change, it becomes a professional role, and it’s very important to ensure that the individual’s autonomy is maintained and upheld.
-It was asked what percentage shared living providers are parents/family members.
Pam: About 50%.
-It was asked if shared living providers must have the same address as the individual receiving services, or if the regulations allow for someone to live in an in-law apartment setup.
Bob: Yes, for people who have more independence, we do have several setups like that, but they do have to have the same address.
-It was asked if people receiving shared living through Section 29 come off of the Section 21 waitlist. It was stated by someone in the room that they do not believe this is the case. People must, in writing, agree to come off the waitlist.
-There was a question regarding the transportation aspect.
Bob: For LogistiCare to approve transportation it must be in the plan. Transportation will be covered even if people are partially self-paying, as long as it’s in the plan.
-It was stated that it’s more difficult for people to feel like it’s their home when their parents are their shared living providers; the change to a professional relationship is hard when the parent-child relationship has been long-established.
-It was stated that there are situations in which people with ID/DD are abused, exploited, or neglected by their own family members. In these situations, the Department often takes guardianship, which is also prohibitive. This is where supported decision making is imperative. When discussing shared living it’s important to keep all of this in mind.
Nell Brimmer – Disability Rights Maine (DRM): It was stated that DRM does rights trainings for agencies independently, and also in collaboration with the Department. These occur quarterly around the state.
-It was stated that a parent-specific training could be helpful, because it is difficult for parents to play multiple roles.
Pam: There also needs to be more support and connections for parents and families doing this hard work.
-A parent stated that connecting with other parents is very difficult. It was stated that parents are often unable to attend meetings during the day, or connect with other parents in the evening, due to their various responsibilities. This is where the Coalition and Community Connect are trying to fill the gap. The minutes from Coalition meetings are disseminated to a broad audience so that families can stay apprised of the current state of the system of care for their loved ones. And time is purposely allowed for families to connect with one another for the first 15 minutes of the meeting, and immediately afterwards. Numerous families have connected this way and created congregate living arrangements, after forming connections at the Coalition. Community Connect also works as local extension of the Coalition to establish regional satellite sites, to make connecting in-person more accessible at a local level, and it has a Facebook group with a robust membership. It was stated that Maine Parent Federation and Autism Society of Maine also help parents connect with each other. These are some of the ways in which people can make connections and feel supported.
-It was stated that transition planning in school ought to include parents because it’s a transition for the entire family.
Lydia Dawson - MACSP: The way shared living is described to people varies greatly across the board. Support needs vary greatly. Some people in shared living desire something similar to a roommate situation, whereas other people want to feel like part of a family-type environment. Ultimately, for the person supported, it really comes down to the Person Centered Planning (PCP) process. This should be wholly individualized; I worry that we’ve really lost sight of what the PCP really looks like. The State sets limitation about how much support or services someone receives – regardless the person should still be directing what those services are and how they’re carried out. Some people need more support than the State allows; that’s where we run into these limitations. If someone needs home support 24/7, but also needs support around community integration, they are at an impasse because there isn’t room in the budget to do both sufficiently. On the other hand, there are a lot of people for whom this will work well. What remains critical is having the individual direct the PCP process, and subsequently his or her services.
-It was asked what the turnover rate is for shared living providers.
Bob: I can only speak from our experience; we’ve had some very long-term shared living providers. We’ve seen some instances where people have moved out of shared living to live more independently; alternatively, people have left shared living because they needed more support. We encourage spending a fair amount of time relationship building in the beginning to ensure it’s a good fit.
Pam: It’s also about full disclosure. Often, when we’ve had turnover, there are mental health issues involved, of which the shared living coordinator was unaware. They’re difficult conversations, but it’s very important for the individual’s needs and stability to have them.
-It was stated sometimes the individual’s expectations were different that the reality of the situation. This can be hard to gather through the initial meet-and-greets.
Bob: Regarding turnover, in group home settings there tends to be a lot of staffing turnover. People who need support also need consistency. In shared living they have that consistency, and that is essential to its success as well.
Cullen: This was a good discussion. Thank you both for presenting and getting this conversation going. Well done! I want to reinforce that this Coalition is another venue where parents can connect with each other. This group is designed for parents, self-advocates, providers, and everyone involved to come together and learn from one another. When this Coalition started back in 2006, the system was very much a one-size-fits-all model. This group worked diligently and deliberately to develop ways in which the system could change to better care for people with ID/DD; to create a system that would provide just enough services – no more, no less. Nobody – not people with ID/DD, or parents – wants more than they need. And nobody wants less than they need. The optimal efficiency will be reached when everyone has just what they need. We’re still seeing some of these original limitations; there are still some ways in which the system is one-size-fits-all. But it has improved significantly as evidenced by Section 29 supporting shared living options now.
Peter: The Health and Human Services (HHS) Committee examined shared living. We clearly saw a one-size-fits-all system which we felt could be better adapted to meet individual situations – for both consumers and providers. We asked the Department to look at that and come back to the Committee with a report and recommendations. It would be advantageous to reexamine that, and look at the ways in which we can develop practices, procedures, regulations, and reimbursement rates that reflects that “no more, no less” concept. If you look at the landscape, there are huge swings, where it’s all or nothing. That doesn’t seem like an ideal way to manage services or programs. People on the ground likely have wonderful ways to make services more effective and responsive, but can’t because they’re boxed into these limitations.
-There was agreement shown by heads nodding to this.
Cullen: There has been marked progress, but there is still work to be done to have an individualized system of care. Thank you both again for presenting!
End of presentation. (Round of applause)
DHHS, Office of Aging and Disability Services (OADS) & Office of Child and Family Services (OCFS):
Cullen: As I reported at last month’s meeting, Commissioner Hamilton wishes to represent DHHS at these meetings. It is great news that DHHS will be at the table. Commissioner Hamilton will be in attendance at next month’s meeting, and we have cleared half of the agenda so that he can provide updates and allow time for discussion. This is a wonderful opportunity for us to hear from the Department, and for the Department to hear from us, so that we can continue to work in collaboration to develop, enhance, and support ways in which the system can work best for people with ID/DD. I hope that when the Commissioner attends that this group will help him to feel welcome, and impress upon him how important it is to have DHHS around this table, so we can have an inclusive dialogue, from which everyone benefits.
Lydia: The Section 28 waitlist is currently inaccessible, and has been for the past month and a half. There’s already a huge deficit in the ability to provide Section 28 services; this has halted an already difficult process. Any information at all would be helpful.
-It was stated that there has been no success in getting approvals from the Department for flexible shared living arrangements. Shared living providers in the room stated that they’ve received verbal approvals for flexible scenarios, but they were later officially denied. Providers were eventually told that partial shared living would not be approved.
Lydia: When the rules were originally promulgated, the Department acknowledged that having flexible shared living options made sense. However, in practice it has proven to be very difficult. MACSP met with OADS regarding this. Department officials stated that they would be trying to remedy this, and stated that their staff needed more training.
Pam: We’ve been told that if we’re not requesting 24/7/365, then we’re not proving medical necessity.
Lydia: We should be focusing on unmet needs. We’ve gotten used to the “something is better than nothing” culture. The truth is, if we’re not documenting and advocating for unmet needs, no one will know they exist.
Pam: We’re working with people who have been denied, asking their case managers to appeal; it’s the only way we’re going to get that squeaky wheel to keep turning.
Rep. Dale Denno: If you have Ricker here next month, and you have an instance where the Department isn’t being responsive, this would be the time to bring this and other key issues up. This is an important opportunity to state that you would appreciate the Department participating in an inclusive dialogue, and seek resolutions to these challenges.
Cullen: The Department has requested that we compile questions in advance of the April meeting. If you have questions please send those to me via email ([email protected]).
Peter: Answers lead to additional questions, which lead to more answers, which lead to more questions, and so on; that is how dialogue works. Maybe one of the questions is: How can we get a regular, consistent opportunity to have that conversation and interactive dialogue with the Department? There have been times when the Department participated in this Coalition with regularity and ensured there was a consistent, inclusive dialogue.
Cullen: Yes, this Coalition has enjoyed excellent periods of interactive dialogue with the Department in the past, from which everyone involved benefited.
Peter: Now we have to determine how can we reestablish that line of communication with DHHS, because it’s crucial.
State Legislature Update:
Rep. Dale Denno: There are two companion bills in the Legislature, both of which are in good positions and are in response to the OIG report. My bill, LD 1676, would create a Death and Serious Injury Review Panel. [This is in response to the OIG report, and a new follow-up report, “Ensuring Beneficiary Health and Safety in Group Homes Through Safe Implementation of Comprehensive Compliance Oversight,” released in January.] Everyone on the Committee agreed with the idea in theory, however it appears the sticking point for some is who should carry out the task, whether it’s a new panel or one already in existence. Representative Jennifer Parker’s bill, LD 1709, would give the Maine Developmental Services Oversight and Advisory Board (MDSOAB) access to reports, to which it is already supposed to have access per existing statute; however, this is not occurring. The MDSOAB is supposed to have access to data and provide some independent oversight to the Department. The Department has taken the position that they won’t give data to the MDSOAB because of a previous perceived data breach. However, legislators are supposed to uphold the law, and the law clearly states that the Department must share data with the MDSOAB, which is not occurring.
-Jennifer Putnam distributed information on the differences between the two bills. (Click here for the handout.)
-There was an inquiry regarding the alleged data breach.
Jennifer Putnam: About two years ago there was one-time instance in which it was thought there could be a potential data breach. This matter was referred to the AG’s office, which then determined there was in fact not a breach.
Rep. Denno: A lawsuit could be brought to force the matter. I don’t know which would be more practical. A conversation with the Governor’s office sounded like a good option, but it appears that will not be as productive as we initially thought.
Cullen: I wanted to thank you for jumping into the fray and submitting legislation to help create a system that is accountable for people with ID/DD.
Rep. Denno: I would be happy to work with you on an ongoing basis and submit legislation as necessary. If I’m re-elected in November, I’ll be in a position to do so.
Disability Rights Maine (DRM) Update:
Nell Brimmer: DRM recently issued a statement in response to the Department’s proposal to develop two new inpatient institutions, to fill what is described as a gap in services for Maine children with disabilities. Children deserve to be served in the least restrictive environment; creating two new institutions is not the answer. (Click here for DRM’s statement).
Federal Update:
Cullen: Congress reached a budget agreement – the Bipartisan Budget Act of 2018 was enacted in the early hours of 2/9, ending a very brief government shutdown. The agreement includes another short-term Continuing Resolution (CR), funding the government through 3/23. It appears that Congress is poised to enact an omnibus spending bill for the remainder of FY 18. The budget agreement provides some relief from sequestration; HUD was poised to lose $10-$15 billion if Congress didn’t remedy this. The agreement increases the spending caps, providing sequestration relief, and lifts the debt limit through 3/1/19. With this, in the next couple of months we hope to see more funding for programs such as HUD. I will be down in DC next week to advocate for HUD resources in particular, and I hope to have more information on this at next month’s meeting.
Handouts/announcements:
The next meeting will be on April 9, 2018
Featured Speaker: Ricker Hamilton, Commissioner, DHHS, Topic: Services for people with ID/DD.
Also featured will be Jodi Benvie, Support Coordinator, KFI South. Topic: Can Plans and other effective strategies for independence.
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).
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Featured Speaker: Pam Belisle and Bob Duranleau, Shared Living Coordinators, Group Main Stream (GMS). gmsme.org Topic: An overview of Shared Living, an eligible service under Section 29.
Cullen: The recent changes to Section 29 help bridge the gap for people who need more support than Section 29 previously offered. For some, expanded Section 29 services may meet their needs sufficiently, and they may no longer require the comprehensive services provided under Section 21, while others will have their needs better met while waiting for a Section 21 offer. This group did a lot of work to convince the Legislature that expanding Section 29 was advantageous. Today we’re joined by Representative Dale Denno and former Representative Peter Stuckey, both of whom were essential in ensuring that the expansion of Section 29 services came to fruition. Our speakers today are Pam Belisle and Bob Duranleau from Group Main Stream. Pam and Bob are going tell us about shared living and how that plays into the expanded Section 29 options. Thank you both for being here today.
Bob Duranleau: Thank you for having us, and for your work to make this happen.
Begin Presentation (Click here to view the presentation)
Discussion:
-It was asked approximately how much the daily stipends are.
Bob: Depending on the agency, it could fall between $85 and $100 per day. There are many different factors at play. The administrative agency, which serves as a pass-through, would bill MaineCare for services, and pass it on to the shared living provider through the stipend. The agency would have a contract with the shared living provider, and the shared living provider would also have a contract with the individual and/or the guardian.
Peter Stuckey: Looking into shared living was one of my first exposures to this world. We found that the level of services provided by shared living providers, as well as the oversight provided by the administrating agencies, varied greatly. And, back then there was only one rate.
Bob: That’s a really good observation, and that’s why the stipend rate differs. When you first complete an intake, there’s an in-depth assessment, which includes health and safety questions such as how long the individual can be alone, fire safety, first aid, and so on. There are people who only need support during the evenings and at night; the stipend in these situations might be on the lower end. Whereas for someone who needs more support during the day, such as help with activities of daily living, the stipend might be on the higher end.
Peter: Does the State pay the agencies based on acuity?
Bob: The State has a rate they pay the agencies per day, which was recently increased, though the increase may sunset at the end of the fiscal year.
Pam Belisle: Agencies determine the daily stipend. Group Main Stream ranges from $97 to $100. It’s also up to the agency how much goes directly to the provider and what stays with the agency for its oversight.
Peter: It appears there’s a wide range of needs and expectations from shared living. It seems to me the $15 difference in the stipend rate isn’t well-matched to that variance.
-It was asked if the shared living model works for people who need 24/7 support.
Bob: It’s really an individualized model. We have some folks with very high needs who do very well in shared living. It’s very individualized and that’s why it’s so important to have well-matched shared living providers.
-Another shared living provider in the room stated that there’s also an enhanced rate available, which requires a separate process and application.
-It was stated that kids with Autism who have congenital heart defects need surgical approval for dental checkups, 90-95% of whom also have gastrointestinal issues, further complicating medical matters. It was asked if shared living providers help with access to medical alternatives.
Pam: With shared living, the responsibility to look into and pursue what’s best for the individual medically is still up to the guardian.
-It was stated that alternative medical practices that address this are sorely lacking in Maine.
Bob: It’s an exciting change to be able to offer shared living as an option for people receiving Section 29 services.
Pam: When I talk to folks about Section 21 versus Section 29, I frame it as Section 21 being like Willy Wonka’s golden ticket, you get it all; whereas Section 29 is limited, you don’t get it all. We’re still continuing to advocate for more. Section 29 services are better and more encompassing than they previously were, but Section 29 still caps out at $52,425 per year. If shared living is utilized 24/7, 365 days a year, it leaves approximately $1,000 per year for community supports. You don’t have to choose one or the other, but with the cap it’s still limited. For shared living, we have to prove medical necessity. Approvals are coming through more frequently for applications that request authorization for full-time shared living (24/7/365). Many of the applications are from families already providing the service, just not in a professional capacity, but it doesn’t mean it’s going to get approved. For situations where the majority of the Section 29 cap is going towards Shared Living, some people are choosing to pay for community support services out-of-pocket.
- It was asked what the difference is between a group home and a shared living arrangement.
Bob: With shared living you’re living with a family, you’re welcomed into the homes as part of the household. You have the opportunity to meet with potential shared living providers to see if they’re a good match for your needs and desires. Group homes are staffed homes, usually shared with other people receiving services, with staff hired and paid by an agency.
-It was stated that in some circumstances shared living doesn’t feel autonomous, rather it feels like an “adoptive parent” environment, which can be constraining.
Pam: The shared living model is designed for the individual to have increased autonomy. If this isn’t occurring than the individual or guardian ought to bring this to the oversight agency’s attention, and/or to the case manager.
Bob: One thing we haven’t discussed yet is the role of the case manager. Case managers are required to visit shared living providers’ homes and use the shared living review tool. The things you’re mentioning, though perhaps they could be reworked, are things that are covered in that tool.
-It was stated that it’s difficult for people to speak up.
Jennifer Putnam: This has been a concern that family members have mentioned, especially since shared living was added into Section 29 eligible services. We’re talking about family members now playing a third role when they’re the shared living provider. It’s a huge ask for people to learn to draw those lines between parent and provider. This is incredibly difficult and we haven’t seen any additional training, beyond the standard shared living training, specific to that issue for parents/family members.
Pam: At this point it’s the responsibility of the shared living coordinator to relay that information. People applying to be shared living providers need to know that their role does change, it becomes a professional role, and it’s very important to ensure that the individual’s autonomy is maintained and upheld.
-It was asked what percentage shared living providers are parents/family members.
Pam: About 50%.
-It was asked if shared living providers must have the same address as the individual receiving services, or if the regulations allow for someone to live in an in-law apartment setup.
Bob: Yes, for people who have more independence, we do have several setups like that, but they do have to have the same address.
-It was asked if people receiving shared living through Section 29 come off of the Section 21 waitlist. It was stated by someone in the room that they do not believe this is the case. People must, in writing, agree to come off the waitlist.
-There was a question regarding the transportation aspect.
Bob: For LogistiCare to approve transportation it must be in the plan. Transportation will be covered even if people are partially self-paying, as long as it’s in the plan.
-It was stated that it’s more difficult for people to feel like it’s their home when their parents are their shared living providers; the change to a professional relationship is hard when the parent-child relationship has been long-established.
-It was stated that there are situations in which people with ID/DD are abused, exploited, or neglected by their own family members. In these situations, the Department often takes guardianship, which is also prohibitive. This is where supported decision making is imperative. When discussing shared living it’s important to keep all of this in mind.
Nell Brimmer – Disability Rights Maine (DRM): It was stated that DRM does rights trainings for agencies independently, and also in collaboration with the Department. These occur quarterly around the state.
-It was stated that a parent-specific training could be helpful, because it is difficult for parents to play multiple roles.
Pam: There also needs to be more support and connections for parents and families doing this hard work.
-A parent stated that connecting with other parents is very difficult. It was stated that parents are often unable to attend meetings during the day, or connect with other parents in the evening, due to their various responsibilities. This is where the Coalition and Community Connect are trying to fill the gap. The minutes from Coalition meetings are disseminated to a broad audience so that families can stay apprised of the current state of the system of care for their loved ones. And time is purposely allowed for families to connect with one another for the first 15 minutes of the meeting, and immediately afterwards. Numerous families have connected this way and created congregate living arrangements, after forming connections at the Coalition. Community Connect also works as local extension of the Coalition to establish regional satellite sites, to make connecting in-person more accessible at a local level, and it has a Facebook group with a robust membership. It was stated that Maine Parent Federation and Autism Society of Maine also help parents connect with each other. These are some of the ways in which people can make connections and feel supported.
-It was stated that transition planning in school ought to include parents because it’s a transition for the entire family.
Lydia Dawson - MACSP: The way shared living is described to people varies greatly across the board. Support needs vary greatly. Some people in shared living desire something similar to a roommate situation, whereas other people want to feel like part of a family-type environment. Ultimately, for the person supported, it really comes down to the Person Centered Planning (PCP) process. This should be wholly individualized; I worry that we’ve really lost sight of what the PCP really looks like. The State sets limitation about how much support or services someone receives – regardless the person should still be directing what those services are and how they’re carried out. Some people need more support than the State allows; that’s where we run into these limitations. If someone needs home support 24/7, but also needs support around community integration, they are at an impasse because there isn’t room in the budget to do both sufficiently. On the other hand, there are a lot of people for whom this will work well. What remains critical is having the individual direct the PCP process, and subsequently his or her services.
-It was asked what the turnover rate is for shared living providers.
Bob: I can only speak from our experience; we’ve had some very long-term shared living providers. We’ve seen some instances where people have moved out of shared living to live more independently; alternatively, people have left shared living because they needed more support. We encourage spending a fair amount of time relationship building in the beginning to ensure it’s a good fit.
Pam: It’s also about full disclosure. Often, when we’ve had turnover, there are mental health issues involved, of which the shared living coordinator was unaware. They’re difficult conversations, but it’s very important for the individual’s needs and stability to have them.
-It was stated sometimes the individual’s expectations were different that the reality of the situation. This can be hard to gather through the initial meet-and-greets.
Bob: Regarding turnover, in group home settings there tends to be a lot of staffing turnover. People who need support also need consistency. In shared living they have that consistency, and that is essential to its success as well.
Cullen: This was a good discussion. Thank you both for presenting and getting this conversation going. Well done! I want to reinforce that this Coalition is another venue where parents can connect with each other. This group is designed for parents, self-advocates, providers, and everyone involved to come together and learn from one another. When this Coalition started back in 2006, the system was very much a one-size-fits-all model. This group worked diligently and deliberately to develop ways in which the system could change to better care for people with ID/DD; to create a system that would provide just enough services – no more, no less. Nobody – not people with ID/DD, or parents – wants more than they need. And nobody wants less than they need. The optimal efficiency will be reached when everyone has just what they need. We’re still seeing some of these original limitations; there are still some ways in which the system is one-size-fits-all. But it has improved significantly as evidenced by Section 29 supporting shared living options now.
Peter: The Health and Human Services (HHS) Committee examined shared living. We clearly saw a one-size-fits-all system which we felt could be better adapted to meet individual situations – for both consumers and providers. We asked the Department to look at that and come back to the Committee with a report and recommendations. It would be advantageous to reexamine that, and look at the ways in which we can develop practices, procedures, regulations, and reimbursement rates that reflects that “no more, no less” concept. If you look at the landscape, there are huge swings, where it’s all or nothing. That doesn’t seem like an ideal way to manage services or programs. People on the ground likely have wonderful ways to make services more effective and responsive, but can’t because they’re boxed into these limitations.
-There was agreement shown by heads nodding to this.
Cullen: There has been marked progress, but there is still work to be done to have an individualized system of care. Thank you both again for presenting!
End of presentation. (Round of applause)
DHHS, Office of Aging and Disability Services (OADS) & Office of Child and Family Services (OCFS):
Cullen: As I reported at last month’s meeting, Commissioner Hamilton wishes to represent DHHS at these meetings. It is great news that DHHS will be at the table. Commissioner Hamilton will be in attendance at next month’s meeting, and we have cleared half of the agenda so that he can provide updates and allow time for discussion. This is a wonderful opportunity for us to hear from the Department, and for the Department to hear from us, so that we can continue to work in collaboration to develop, enhance, and support ways in which the system can work best for people with ID/DD. I hope that when the Commissioner attends that this group will help him to feel welcome, and impress upon him how important it is to have DHHS around this table, so we can have an inclusive dialogue, from which everyone benefits.
Lydia: The Section 28 waitlist is currently inaccessible, and has been for the past month and a half. There’s already a huge deficit in the ability to provide Section 28 services; this has halted an already difficult process. Any information at all would be helpful.
-It was stated that there has been no success in getting approvals from the Department for flexible shared living arrangements. Shared living providers in the room stated that they’ve received verbal approvals for flexible scenarios, but they were later officially denied. Providers were eventually told that partial shared living would not be approved.
Lydia: When the rules were originally promulgated, the Department acknowledged that having flexible shared living options made sense. However, in practice it has proven to be very difficult. MACSP met with OADS regarding this. Department officials stated that they would be trying to remedy this, and stated that their staff needed more training.
Pam: We’ve been told that if we’re not requesting 24/7/365, then we’re not proving medical necessity.
Lydia: We should be focusing on unmet needs. We’ve gotten used to the “something is better than nothing” culture. The truth is, if we’re not documenting and advocating for unmet needs, no one will know they exist.
Pam: We’re working with people who have been denied, asking their case managers to appeal; it’s the only way we’re going to get that squeaky wheel to keep turning.
Rep. Dale Denno: If you have Ricker here next month, and you have an instance where the Department isn’t being responsive, this would be the time to bring this and other key issues up. This is an important opportunity to state that you would appreciate the Department participating in an inclusive dialogue, and seek resolutions to these challenges.
Cullen: The Department has requested that we compile questions in advance of the April meeting. If you have questions please send those to me via email ([email protected]).
Peter: Answers lead to additional questions, which lead to more answers, which lead to more questions, and so on; that is how dialogue works. Maybe one of the questions is: How can we get a regular, consistent opportunity to have that conversation and interactive dialogue with the Department? There have been times when the Department participated in this Coalition with regularity and ensured there was a consistent, inclusive dialogue.
Cullen: Yes, this Coalition has enjoyed excellent periods of interactive dialogue with the Department in the past, from which everyone involved benefited.
Peter: Now we have to determine how can we reestablish that line of communication with DHHS, because it’s crucial.
State Legislature Update:
Rep. Dale Denno: There are two companion bills in the Legislature, both of which are in good positions and are in response to the OIG report. My bill, LD 1676, would create a Death and Serious Injury Review Panel. [This is in response to the OIG report, and a new follow-up report, “Ensuring Beneficiary Health and Safety in Group Homes Through Safe Implementation of Comprehensive Compliance Oversight,” released in January.] Everyone on the Committee agreed with the idea in theory, however it appears the sticking point for some is who should carry out the task, whether it’s a new panel or one already in existence. Representative Jennifer Parker’s bill, LD 1709, would give the Maine Developmental Services Oversight and Advisory Board (MDSOAB) access to reports, to which it is already supposed to have access per existing statute; however, this is not occurring. The MDSOAB is supposed to have access to data and provide some independent oversight to the Department. The Department has taken the position that they won’t give data to the MDSOAB because of a previous perceived data breach. However, legislators are supposed to uphold the law, and the law clearly states that the Department must share data with the MDSOAB, which is not occurring.
-Jennifer Putnam distributed information on the differences between the two bills. (Click here for the handout.)
-There was an inquiry regarding the alleged data breach.
Jennifer Putnam: About two years ago there was one-time instance in which it was thought there could be a potential data breach. This matter was referred to the AG’s office, which then determined there was in fact not a breach.
Rep. Denno: A lawsuit could be brought to force the matter. I don’t know which would be more practical. A conversation with the Governor’s office sounded like a good option, but it appears that will not be as productive as we initially thought.
Cullen: I wanted to thank you for jumping into the fray and submitting legislation to help create a system that is accountable for people with ID/DD.
Rep. Denno: I would be happy to work with you on an ongoing basis and submit legislation as necessary. If I’m re-elected in November, I’ll be in a position to do so.
Disability Rights Maine (DRM) Update:
Nell Brimmer: DRM recently issued a statement in response to the Department’s proposal to develop two new inpatient institutions, to fill what is described as a gap in services for Maine children with disabilities. Children deserve to be served in the least restrictive environment; creating two new institutions is not the answer. (Click here for DRM’s statement).
Federal Update:
Cullen: Congress reached a budget agreement – the Bipartisan Budget Act of 2018 was enacted in the early hours of 2/9, ending a very brief government shutdown. The agreement includes another short-term Continuing Resolution (CR), funding the government through 3/23. It appears that Congress is poised to enact an omnibus spending bill for the remainder of FY 18. The budget agreement provides some relief from sequestration; HUD was poised to lose $10-$15 billion if Congress didn’t remedy this. The agreement increases the spending caps, providing sequestration relief, and lifts the debt limit through 3/1/19. With this, in the next couple of months we hope to see more funding for programs such as HUD. I will be down in DC next week to advocate for HUD resources in particular, and I hope to have more information on this at next month’s meeting.
Handouts/announcements:
- Click here for the survey from Community Connect regarding the upcoming Community Connect Collaborative Advocacy Strategy Forum.
- Click here for more information on the Morrison Center Shared Living Info Session on May 22nd
- Click here for information on the Seventh Annual Special Celebration of the Arts: Lest We Forget.
The next meeting will be on April 9, 2018
Featured Speaker: Ricker Hamilton, Commissioner, DHHS, Topic: Services for people with ID/DD.
Also featured will be Jodi Benvie, Support Coordinator, KFI South. Topic: Can Plans and other effective strategies for independence.
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).