February 12, 2018
Minutes
Minutes
Present: Kim Humphrey, Jenn Brooking, Abbie Tanguay, Pamela Belise, Mary Chris Semrow, Michael Chapman, Chip MacGowan, Vicky Shaw, Bryan Gordon, Jennifer Putnam, Erin Rowan, Glenda Wilson, Noel K. Gallagher, Eve Sawyer, Rachel Dyer, Paula Schrank, Nonny Soifer, Jodi Benvie, Alizah Brndwein, Jerry Silbert, Jamie Whitehouse, Kailen Smith, Nell Brimmer, Margaret Cardoza, Joanna Bulger, Betsy Mahoney, Karen Tompkins, Debra Dunlap, Cullen Ryan, and Vickey Rand. Via Zoom – (Bangor): Elizabeth Whitmore, Julie Hagel, and Steve Johnson. (Sanford): Brenda Smith. (Winthrop): Cathy Dionne and Ann Long. (Auburn): Ann Bentley. (Brunswick): Colleen Gilliam. (Farmington): Darryl Wood and Kristin McPherson. (Kittery): Dennis and Debbie Dean. (Waterville): Pam Cairnie, Cheryl Stalilonis, and Jillian Jolicoeur. (Misc. sites): Stacy Lamontagne.
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: Debra Dunlap, Regional Director, Community Partnerships for Protecting Children (CPPC). www.cppcmaine.org Topic: Creating scaffolding – Building a framework for independence.
Cullen: Our speaker today is Deb Dunlap. One of the things that made me think about Deb speaking to this group is this concept of scaffolding. I have a 21-year-old son who needs scaffolding around him. He’s starting to figure out the world and there are certain trigger points that help him make safe, appropriate decisions. With recently arrived scaffolding in place due to the increased Section 29 caps, for the first time in his life I’m starting to see how my son might be able to live on his own one day with greater skills and independence, and truly be included as part of the community. That concept is empowering for him, and for me as a parent. Creating scaffolding, building a framework for independence, is something from which everyone benefits. I am looking forward to today’s discussion. Thank you for being here today, Deb!
Begin Presentation (Click here to view the presentation)
Debra Dunlap: In my professional role I’m the Regional Director for CPPC (Community Partnerships for Protecting Children). CPPC is a network of people, partnering to support families who are experiencing the highest levels of stress, before things get out of control. And when life has already gotten complicated, we walk beside each family member, to help them get back on their feet. CPPC’s goal is to reduce and eliminate abuse and neglect by working with OCFS, and building communities. Together, we help solve problems so parents can focus on raising safe and thriving children. We know that preventing child abuse is not simply a matter of parents doing a better job, but about creating communities in which doing better is easier. CPPC follows a similar path that we take with our own family – following the wrap-around model where we “do for, cheer with, and cheer on.”
My son Caleb was born in 1995 with Down syndrome. This June, he moved into his own apartment in Portland, and then graduated from Strive U. He moved in on his 22nd birthday. This was very exciting, but also very scary. It took a lot of work and courageous acts by all involved to get him into an independent living situation. When graduation was approaching we started thinking about what we would do post-graduation. This is a big transition! We decided to approach it like we always had, with scaffolding – where you build systems of support around people, with which they do better than they would on their own. Scaffolding is a supporting framework. In the education world there is “instructional scaffolding,” which is support given during the learning process. Instructional scaffolding has three primary features: 1) it needs to be collaborative – the individual for whom you’re building the scaffolding needs to be leading that conversation; 2) it needs to work on tasks just beyond the individual’s skill level and comfort zone; and 3) it needs to provide guidance and support by the expert which is gradually removed. Throughout Caleb’s life, we’ve discovered our goal isn’t to remove all the scaffolding; some scaffolding ought to stay in place, as it lends itself to the structure of his life and helps him be successful.
Strive U is very structured. Upon graduation, that structure is removed. We knew it was coming, but the actual event was a big deal, especially when there isn’t anything in place, yet, to continue to help Caleb be successful. While at Strive U we adopted a mantra: “Stick to the plan.” Caleb does extraordinarily well when he has a plan, and 96% of the time he can stick to that plan; that’s when his greatest successes occur. When things don’t go so well, he recognizes it’s because he’s gone off the plan. Upon graduating, he didn’t have the plan anymore, because Strive U had been clear and programmatic. We collaboratively recognized that we needed to build a new plan, one that he could follow.
à Establishing routines, schedules, and phone calendar alerts: We are living in a time with available technology which can be used in a way that’s extraordinarily helpful. We sat down together and discussed what Caleb wanted to do, what each day of the week would look like. He knows he needs free time, so it’s scheduled in his calendar. Everything from social time, volunteering, and his home supports, including what he wants to do with them and at what times, are scheduled and entered into his calendar. His calendar alerts him with tones when something needs to be done, including alerts to get ready for those activities.
à Menu planning: Caleb loves to cook – he just got a chef’s hat for Christmas, so he wears that while cooking! He has his meal prep days, when he plans meals that he’ll cook with assistance, and meals he can cook on his own. This also provided an opportunity to think about what the most supportive role could be for his home supports. For the first couple months, we thought that home supports would do most of this with him, but we soon realized that menu planning and grocery shopping wasn’t working – for him or for us. We learned from this and decided that this would be a family task, because we could give stronger guidance around portion sizes and what items might be more advantageous to buy. He uses his menu to help him make a grocery list, and he goes shopping with his dad on Sundays.
à Checklists: This was the first scaffolding I put in place for him. One day, when Caleb was in early elementary school, I was trying to get some work done at home. He kept coming and talking to me about things, while I was trying to stay focused. I had a clipboard at my desk, so I took it and I drew pictures of what I needed him to do – brush his teeth, get dressed, etc. About 15 minutes later, he came back with with everything checked off and done in an appropriate manner. So, I made him some standing checklists, which he helped design, and it helped him stay on task. I use checklists in my own life; these are adaptive skills for everyone on the planet.
à Supported practice: Caleb wanted to alter his routine – he wanted to attend the church near the Maine Mall. However, the bus doesn’t stop there. And, now that he had graduated, he wanted to take the bus to his girlfriend’s house; the bus stops at the end of the apartment complex, but he would still have to navigate the area to her apartment. As he identified these goals we started to figure out how he could accomplish them. We decided that I could go with him, and we would determine the safest way to accomplish his goal together. I really had no clue about the bus system, but he did; he had a glorious time telling me how to handle the bus system. He instructed me to get the 10-ride bus pass, and showed me where and how to purchase it. When we went, the woman working for Metro knew I didn’t know what I was doing but that Caleb did! She knew him! I got to see that he has become part of this community. He got to teach me how to navigate the system. We figured out where and how to go together, and determined when I could step back and Caleb could go on his own. One neat aspect of this process was that the church realized Caleb was taking the bus and navigating to the church since the bus doesn’t stop there. The church implemented a ride van that picks people up at the bus stop and transports them to the church. It’s amazing that the church created an entire structure from which the greater community has benefitted.
à Caleb’s advice: All the skills we learn can make our dreams come true. Caleb is living his dream.
Discussion:
-It was asked if she obtained guardianship.
Deb: We attended a transition meeting at Strive U. At that point in time at least, they wouldn’t accept folks who were not their own guardians, for numerous reasons. For us, it was a relatively easy call because he’s amenable to having us help, and he’s not afraid to ask for help. We are his rep payees; we do the financial piece. We take him to all of his medical appointments, and ensure he signs releases for us to be able to speak to his doctors.
-It was stated that as a parent it’s scary to let go of that.
Deb: Our process with Caleb is scary every day. As family members, we’re the most courageous crew. To fully empower people to have lives that are fully lived is remarkable. However, there are new scary things now that he lives on his own. He’s struggling with panhandlers. There have been three different incidences when he’s given large sums of money away. The first time, he was with a friend and his friend initiated it. The second time, he was going to the movie theater, getting out his wallet when he was approached and asked for money. The third time, someone told him they were having an emergency; Caleb keeps an emergency $20 bill in his wallet – so because it was an emergency, he gave that to the person. He then was very upset because he knew he had been taken advantage of. This is his biggest challenge, and he’s working on it with his counselor. He’s engaging in conversation he shouldn’t, and it’s difficult. I don’t want him to become a target if he becomes known as the guy who hands out twenties.
-One of Caleb’s direct service providers stated that because of the scaffolding, you don’t see something scary happen and shut down. Many parents in situations in which their children were taken advantage of would say “he can’t carry cash, or walk places on his own,” and so on. Deb has never stopped his ability to grow because other people have taken advantage of him, or when his choices were less than great. This has allowed him to learn from these situations and grow.
Deb: When it first happened that was my gut reaction, though!
-It was asked if Caleb receives services under Section 29, and if so how communication works with his providers.
Deb: Yes he does, that’s what pays for his home supports. He has a goal of reducing home supports. He has two workers right now; he’s had supports since July, these are workers numbers two and four. We communicate a lot through texts. Generally, I initiate the communication and we copy each other in correspondences. He’s started including me in text messages and emails. Planning can be difficult and daunting; he’s learning to copy me on these correspondences to help with that. It was a bit of a learning curve for me to recognize that I couldn’t go directly to the provider organization; we had to set some boundaries. So, we came up with a system that works for all of us.
-It was stated that it’s striking how useful this would be for everyone, and how fun it looks.
Deb: My sense of humor has developed because Caleb has such a great sense of humor. He had extraordinary behavior issues as a young child. I never thought he’d get here. It was difficult to motivate him and work through the behaviors. Not all the members of the household had jumped on board with the instructional scaffolding model, at first. Using humor and keeping things light was something we had to do.
-It was asked if he has a case manager, and if so how involved the case manager is in this process.
Deb: Yes, he does. I’m just learning about adult services, so she’s been helpful with the learning curve. We had to have some discussions with service providers and it was helpful to have the case manager initiate those meetings and conversations.
Cullen: I know you have to leave, Deb, but I want to thank you for this presentation and robust discussion, which will likely continue after you leave. It was fantastic and gave us all a lot to think about. Well done!
End of presentation. (Round of applause)
Cullen: Listening to Deb’s presentation, I’ve found there are parallels between the concept of scaffolding and my previous work as a family therapist working with people diagnosed with mood disorders. What worked for people who were experiencing tough times was having structure. Folks did well when they thought about their day, what they wanted to have in it, and started to build schedules. With this, folks stopped making decisions based on how they felt in the moment. With a schedule and structure, people seem to be able to get the things done they want to accomplish, despite how they might be feeling at the time. Here, we have a system of care that in some ways lacks effective crisis capabilities. A lot of people will launch into crises when they’re faced with challenging situations. Having a framework seems to eliminate a lot of the stressors attributable to the unknown. This group’s Blueprint for Effective Transition provided a roadmap for transition, so people transitioning from school-based to adult services (and various other transitions that occur throughout their lives) could do so in an effective, seamless manner. This concept of scaffolding dovetails nicely with the Blueprint for Effective Transition. I think it would be wonderful to continue discussing this concept. Jodi Benvie had to leave the meeting early as well, but I asked her to be here to talk about CAN plans at perhaps our next meeting, which fits into this idea of building scaffolding around an individual as they make transitions. I’m hoping that Jodi can present soon.
-It was stated that structure and predictability is very important. It was stated that there are many benefits of checklists – they eliminate the need for prompting, depersonalize tasks, and are empowering.
-It was stated that there have been some changes which tie into the concept of scaffolding and available supports. A staff member from the Morrison Center reported that limits were put in place on Occupational Therapy (OT) through the Section 21 rule changes. The Morrison Center had been operating and getting approvals through MaineCare for OT services for an hour a week plus consult time. It appears those limits have changed to 48 units a year, billable in 15-minute increments, which translates to about an hour a month. It was stated that with those changes in place, the Morrison Center is unable to sustain the program, which is very unfortunate. OT could take some of that weight off parents in designing the scaffolding. Morrison Center was one of only two organizations offering OT to adults under Section 21.
-A parent stated that at least one other organization (Woodfords Family Services) must close its OT program as well. It was stated that day programming is great, but that one-on-one time with OT is incredibly important.
-It was mentioned that this appears to be an ongoing issue with the current level of state services – the Department will present something as an available service, but in reality, it’s so limited it’s essentially useless. Or, the Department will expand a service, but the rate they pay providers is so low providers risk providing the service and running their programs at a loss.
-A parent added that with the rule changes, OT consulting is limited to once per month; she stated that her son had OT, and once a month is insufficient. This is a huge loss of concrete supports that were incredibly valuable.
Cullen: What a shame to see supports that were working very well be eliminated. Were these changes part of the recent Section 21 rule changes?
Nell Brimmer – Disability Rights Maine (DRM): They were included as part of Section 21 rule changes, but I believe they’ve been in place for quite some time. How long has this been in effect?
-It was stated that the changes were put in place in November 2016; however, MaineCare didn’t notify the Morrison Center about the changes, and staff were still receiving approvals until very recently.
Nell: This hasn’t been brought to our attention as an issue by individuals using the service.
Cullen: If they brought it to DRM, would it help?
Nell: Yes, if people call DRM (207-626-2774) reporting this as an issue we’d be happy to look into it.
-It was stated that there is an appeals process that could be utilized, however with the programs actually providing the service closing, this may not make a difference.
Nell: We see this issue constantly, where there aren’t providers for the services people want.
Cullen: Thank you for sharing this information. This will be in the minutes so hopefully people affected can reach out to DRM.
-A parent stated that she worries about what would happen to her son if something were to happen to her. Her son, who will be 22 years old next month, was in a placement that was inadequate in assisting him with some basic things. Luckily, she was able to get him into a different program, but this brings up fear of the unknown for the future. She stated that she doesn’t have family who could be there for her son after she’s gone, and it’s frightening. Another parent commented that’s the reason why everyone is around this table. A parent stated that McRae & Associates provides guardian and fiduciary services that may help fill some of the needs of families, as parents think of aging and what will happen to their children after their death; Teri McRae might be a good speaker for this group. A self-advocate stated that, when and where possible, building natural supports can help with planning for the future as well.
-A parent stated that this is essentially a two-fold problem – it’s not just a matter of finding someone, but also finding someone who’s capable of understanding most of the problems our children will face. It’s great to have good intentions, but also having the knowledge necessary to put those intentions into action is key.
Cullen: As Kim stated, this is essentially why we’re all here – we’re trying to figure out how to make the system work better, so we know that our children will be well cared for and continue to live full lives when we die.
Nell: DRM has advocates, and there is the Volunteer Correspondent Program (VCP), which can assist as well.
Nonny Soifer – Maine Developmental Services Oversight and Advisory Board (MDSOAB): The VCP provides volunteer correspondents who advocate and work with people when they don’t have someone else to fulfill that role. This is a wonderful program, but it’s not addressing the issue in perpetuity.
DHHS, Office of Aging and Disability Services (OADS) & Office of Child and Family Services (OCFS):
Cullen: I’ve had some recent correspondence with Commissioner Ricker Hamilton as well as with Amy MacMillan, Acting Director of OADS, over the past few weeks. Commissioner Hamilton wishes to represent DHHS at these meetings. It is great news that DHHS will be at the table; however, it appears the Commissioner won’t be able to attend a meeting until April. I’m in the process of working with his scheduler to see if he can attend the April meeting and be able to stay for its entirety, as we haven’t had DHHS representation since the September meeting, and parents have expressed the desire to continue discussions with the Department. This Coalition is trying to have the system which cares for our loved ones change for the better; this task is made more difficult when all the key players aren’t around the table. 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 here, so we can have an inclusive dialogue. We’re all here to make the system better. It seems to me that when we as parents have less information we’re more prone to be anxious and worry; more information sharing would save us all a lot of distress. I think DHHS wants to help with that; it is a great sign the Commissioner wants to be here.
State Legislature Update
Jennifer Putnam: There’s a lot going on and there are a lot of bills on our radar:
When the 2007 rates were calculated they were set at approximately $10 per hour, when minimum wage was around $6 per hour. Currently, the temporary increase has the rates just over $10 per hour, directly competing with other minimum wage employers, making it even more difficult for providers to hire and retain staff. This is responsible for the higher DSP turnover rate.
-A parent stated that the high rate of staff turnover has tremendously affected her. It was asked what parents can do to support this bill.
Jennifer: You can reach out to and educate your legislators on how this affects you, your family, and the person in your family receiving services. You can also reach out to anyone on the Appropriation and Financial Affairs Committee. I spoke with the House Republican Caucus about a week ago; it’s clear that everyone understands the issue, they just have to find the money.
Other bills we’re watching include:
-It was asked if there was an update on the Adult Protective Services (APS) and Critical Incident System proposed rules.
Jennifer: The deadline has passed for written comments. Though, I’m wondering if the Department might change those rules more than they usually do at the conclusion of the public comment period based on the new joint report.
-It was stated that there is also a bill to weaken the ADA (Americans with Disabilities Act) at the federal level.
-It was stated that there are a lot of bills and it’s hard to keep everything straight, even for legislators. It’s useful to educate legislators, but the way in which this is done and the language used is important. For instance, the MaineCare expansion bill has also been said to have a $26 million price tag, so simply referencing the “$26 million MaineCare bill” could be confusing.
Jennifer: This is very true. The Legislature has lumped LD 967 and Representative Ellie Espling’s bill together and have been referring to them colloquially as the “Direct Care Workers bills.”
-It was asked if the Legislature understands that the way in which the rate was calculated was not as helpful as they intended.
Jennifer: They do – going back to the rate methodology has been helpful. There’s also a bill to slow down the increases to the minimum wage, and some are reporting that this would assist with the DSP rate issue. This would not solve the problem; the minimum wage is one piece of a very large puzzle.
-It was asked if this bill accounts for the minimum wage continuing to increase, and would thus eliminate the need for future corresponding rate increases.
Jennifer: Theoretically, yes. My understanding is that even when annual adjustments are put in statute you end up going back to the Legislature to ensure it’s done.
Cullen: It’s very important to reach out to your legislators. When they hear from a few people on one issue it really resonates with them as being important. Reach out, tell your stories – this is the most effective way to help legislators prioritize the issues that affect you and your family.
Disability Rights Maine (DRM) Update:
Nell Brimmer: We are following LD 123, which would repeal and replace the entire probate code with a uniform probate code, which references supported decision making explicitly.
Margaret Cardoza: DRM has started Partners for Positive Change, which met and will be creating strategic plans.
Nell: DRM provides client-directed advocacy. We work one-on-one with individuals, so we need to hear from people to inform and direct our work.
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 so the Appropriations Committees can negotiate an omnibus bill for the remainder of FY 18. The budget agreement provides some relief from sequestration – a mechanism for automatic across-the-board cuts designed to be such a bad idea Congress would never let it come to fruition. We have been operating under a CR since 10/1/17, and as such Congress hadn’t done anything to solve for 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. Though there is not complete parity between Defense and Non-Defense Discretionary (NDD) sequestration relief, with Defense funding seeing a larger increase, NDD programs will receive a $63 million increase for FY 18, and $68 billion increase in FY 19. With this, in the next couple of months we hope to see more funding for programs such as HUD. We’re still waiting to see what happens based on the tax bill that became law, and whether we’ll see across-the-board cuts to programs, due to Senate PAYGO rules tied to the deficit.
Additionally, President Trump will unveil his FY 19 budget today. HUD Secretary Ben Carson is planning, through the FY19 budget request and accompanying legislation, to propose increasing rent contributions for all people in all HUD-subsidized homes from 30% to 35% of their income, and including work requirements. This would affect people who receive Section 8 – people on very finite, limited incomes.
Housing Update:
Cullen: I understand that the HUD 811 program is finally going to hit the streets, after receiving funding more than three years ago. In Maine, this program targets people receiving Section 21 and 29 services. I hope to have an update on this program at a meeting in the near future.
Handouts/announcements:
The next meeting will be on March 12, 2018
Featured Speaker & 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).
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: Debra Dunlap, Regional Director, Community Partnerships for Protecting Children (CPPC). www.cppcmaine.org Topic: Creating scaffolding – Building a framework for independence.
Cullen: Our speaker today is Deb Dunlap. One of the things that made me think about Deb speaking to this group is this concept of scaffolding. I have a 21-year-old son who needs scaffolding around him. He’s starting to figure out the world and there are certain trigger points that help him make safe, appropriate decisions. With recently arrived scaffolding in place due to the increased Section 29 caps, for the first time in his life I’m starting to see how my son might be able to live on his own one day with greater skills and independence, and truly be included as part of the community. That concept is empowering for him, and for me as a parent. Creating scaffolding, building a framework for independence, is something from which everyone benefits. I am looking forward to today’s discussion. Thank you for being here today, Deb!
Begin Presentation (Click here to view the presentation)
Debra Dunlap: In my professional role I’m the Regional Director for CPPC (Community Partnerships for Protecting Children). CPPC is a network of people, partnering to support families who are experiencing the highest levels of stress, before things get out of control. And when life has already gotten complicated, we walk beside each family member, to help them get back on their feet. CPPC’s goal is to reduce and eliminate abuse and neglect by working with OCFS, and building communities. Together, we help solve problems so parents can focus on raising safe and thriving children. We know that preventing child abuse is not simply a matter of parents doing a better job, but about creating communities in which doing better is easier. CPPC follows a similar path that we take with our own family – following the wrap-around model where we “do for, cheer with, and cheer on.”
My son Caleb was born in 1995 with Down syndrome. This June, he moved into his own apartment in Portland, and then graduated from Strive U. He moved in on his 22nd birthday. This was very exciting, but also very scary. It took a lot of work and courageous acts by all involved to get him into an independent living situation. When graduation was approaching we started thinking about what we would do post-graduation. This is a big transition! We decided to approach it like we always had, with scaffolding – where you build systems of support around people, with which they do better than they would on their own. Scaffolding is a supporting framework. In the education world there is “instructional scaffolding,” which is support given during the learning process. Instructional scaffolding has three primary features: 1) it needs to be collaborative – the individual for whom you’re building the scaffolding needs to be leading that conversation; 2) it needs to work on tasks just beyond the individual’s skill level and comfort zone; and 3) it needs to provide guidance and support by the expert which is gradually removed. Throughout Caleb’s life, we’ve discovered our goal isn’t to remove all the scaffolding; some scaffolding ought to stay in place, as it lends itself to the structure of his life and helps him be successful.
Strive U is very structured. Upon graduation, that structure is removed. We knew it was coming, but the actual event was a big deal, especially when there isn’t anything in place, yet, to continue to help Caleb be successful. While at Strive U we adopted a mantra: “Stick to the plan.” Caleb does extraordinarily well when he has a plan, and 96% of the time he can stick to that plan; that’s when his greatest successes occur. When things don’t go so well, he recognizes it’s because he’s gone off the plan. Upon graduating, he didn’t have the plan anymore, because Strive U had been clear and programmatic. We collaboratively recognized that we needed to build a new plan, one that he could follow.
à Establishing routines, schedules, and phone calendar alerts: We are living in a time with available technology which can be used in a way that’s extraordinarily helpful. We sat down together and discussed what Caleb wanted to do, what each day of the week would look like. He knows he needs free time, so it’s scheduled in his calendar. Everything from social time, volunteering, and his home supports, including what he wants to do with them and at what times, are scheduled and entered into his calendar. His calendar alerts him with tones when something needs to be done, including alerts to get ready for those activities.
à Menu planning: Caleb loves to cook – he just got a chef’s hat for Christmas, so he wears that while cooking! He has his meal prep days, when he plans meals that he’ll cook with assistance, and meals he can cook on his own. This also provided an opportunity to think about what the most supportive role could be for his home supports. For the first couple months, we thought that home supports would do most of this with him, but we soon realized that menu planning and grocery shopping wasn’t working – for him or for us. We learned from this and decided that this would be a family task, because we could give stronger guidance around portion sizes and what items might be more advantageous to buy. He uses his menu to help him make a grocery list, and he goes shopping with his dad on Sundays.
à Checklists: This was the first scaffolding I put in place for him. One day, when Caleb was in early elementary school, I was trying to get some work done at home. He kept coming and talking to me about things, while I was trying to stay focused. I had a clipboard at my desk, so I took it and I drew pictures of what I needed him to do – brush his teeth, get dressed, etc. About 15 minutes later, he came back with with everything checked off and done in an appropriate manner. So, I made him some standing checklists, which he helped design, and it helped him stay on task. I use checklists in my own life; these are adaptive skills for everyone on the planet.
à Supported practice: Caleb wanted to alter his routine – he wanted to attend the church near the Maine Mall. However, the bus doesn’t stop there. And, now that he had graduated, he wanted to take the bus to his girlfriend’s house; the bus stops at the end of the apartment complex, but he would still have to navigate the area to her apartment. As he identified these goals we started to figure out how he could accomplish them. We decided that I could go with him, and we would determine the safest way to accomplish his goal together. I really had no clue about the bus system, but he did; he had a glorious time telling me how to handle the bus system. He instructed me to get the 10-ride bus pass, and showed me where and how to purchase it. When we went, the woman working for Metro knew I didn’t know what I was doing but that Caleb did! She knew him! I got to see that he has become part of this community. He got to teach me how to navigate the system. We figured out where and how to go together, and determined when I could step back and Caleb could go on his own. One neat aspect of this process was that the church realized Caleb was taking the bus and navigating to the church since the bus doesn’t stop there. The church implemented a ride van that picks people up at the bus stop and transports them to the church. It’s amazing that the church created an entire structure from which the greater community has benefitted.
à Caleb’s advice: All the skills we learn can make our dreams come true. Caleb is living his dream.
Discussion:
-It was asked if she obtained guardianship.
Deb: We attended a transition meeting at Strive U. At that point in time at least, they wouldn’t accept folks who were not their own guardians, for numerous reasons. For us, it was a relatively easy call because he’s amenable to having us help, and he’s not afraid to ask for help. We are his rep payees; we do the financial piece. We take him to all of his medical appointments, and ensure he signs releases for us to be able to speak to his doctors.
-It was stated that as a parent it’s scary to let go of that.
Deb: Our process with Caleb is scary every day. As family members, we’re the most courageous crew. To fully empower people to have lives that are fully lived is remarkable. However, there are new scary things now that he lives on his own. He’s struggling with panhandlers. There have been three different incidences when he’s given large sums of money away. The first time, he was with a friend and his friend initiated it. The second time, he was going to the movie theater, getting out his wallet when he was approached and asked for money. The third time, someone told him they were having an emergency; Caleb keeps an emergency $20 bill in his wallet – so because it was an emergency, he gave that to the person. He then was very upset because he knew he had been taken advantage of. This is his biggest challenge, and he’s working on it with his counselor. He’s engaging in conversation he shouldn’t, and it’s difficult. I don’t want him to become a target if he becomes known as the guy who hands out twenties.
-One of Caleb’s direct service providers stated that because of the scaffolding, you don’t see something scary happen and shut down. Many parents in situations in which their children were taken advantage of would say “he can’t carry cash, or walk places on his own,” and so on. Deb has never stopped his ability to grow because other people have taken advantage of him, or when his choices were less than great. This has allowed him to learn from these situations and grow.
Deb: When it first happened that was my gut reaction, though!
-It was asked if Caleb receives services under Section 29, and if so how communication works with his providers.
Deb: Yes he does, that’s what pays for his home supports. He has a goal of reducing home supports. He has two workers right now; he’s had supports since July, these are workers numbers two and four. We communicate a lot through texts. Generally, I initiate the communication and we copy each other in correspondences. He’s started including me in text messages and emails. Planning can be difficult and daunting; he’s learning to copy me on these correspondences to help with that. It was a bit of a learning curve for me to recognize that I couldn’t go directly to the provider organization; we had to set some boundaries. So, we came up with a system that works for all of us.
-It was stated that it’s striking how useful this would be for everyone, and how fun it looks.
Deb: My sense of humor has developed because Caleb has such a great sense of humor. He had extraordinary behavior issues as a young child. I never thought he’d get here. It was difficult to motivate him and work through the behaviors. Not all the members of the household had jumped on board with the instructional scaffolding model, at first. Using humor and keeping things light was something we had to do.
-It was asked if he has a case manager, and if so how involved the case manager is in this process.
Deb: Yes, he does. I’m just learning about adult services, so she’s been helpful with the learning curve. We had to have some discussions with service providers and it was helpful to have the case manager initiate those meetings and conversations.
Cullen: I know you have to leave, Deb, but I want to thank you for this presentation and robust discussion, which will likely continue after you leave. It was fantastic and gave us all a lot to think about. Well done!
End of presentation. (Round of applause)
Cullen: Listening to Deb’s presentation, I’ve found there are parallels between the concept of scaffolding and my previous work as a family therapist working with people diagnosed with mood disorders. What worked for people who were experiencing tough times was having structure. Folks did well when they thought about their day, what they wanted to have in it, and started to build schedules. With this, folks stopped making decisions based on how they felt in the moment. With a schedule and structure, people seem to be able to get the things done they want to accomplish, despite how they might be feeling at the time. Here, we have a system of care that in some ways lacks effective crisis capabilities. A lot of people will launch into crises when they’re faced with challenging situations. Having a framework seems to eliminate a lot of the stressors attributable to the unknown. This group’s Blueprint for Effective Transition provided a roadmap for transition, so people transitioning from school-based to adult services (and various other transitions that occur throughout their lives) could do so in an effective, seamless manner. This concept of scaffolding dovetails nicely with the Blueprint for Effective Transition. I think it would be wonderful to continue discussing this concept. Jodi Benvie had to leave the meeting early as well, but I asked her to be here to talk about CAN plans at perhaps our next meeting, which fits into this idea of building scaffolding around an individual as they make transitions. I’m hoping that Jodi can present soon.
-It was stated that structure and predictability is very important. It was stated that there are many benefits of checklists – they eliminate the need for prompting, depersonalize tasks, and are empowering.
-It was stated that there have been some changes which tie into the concept of scaffolding and available supports. A staff member from the Morrison Center reported that limits were put in place on Occupational Therapy (OT) through the Section 21 rule changes. The Morrison Center had been operating and getting approvals through MaineCare for OT services for an hour a week plus consult time. It appears those limits have changed to 48 units a year, billable in 15-minute increments, which translates to about an hour a month. It was stated that with those changes in place, the Morrison Center is unable to sustain the program, which is very unfortunate. OT could take some of that weight off parents in designing the scaffolding. Morrison Center was one of only two organizations offering OT to adults under Section 21.
-A parent stated that at least one other organization (Woodfords Family Services) must close its OT program as well. It was stated that day programming is great, but that one-on-one time with OT is incredibly important.
-It was mentioned that this appears to be an ongoing issue with the current level of state services – the Department will present something as an available service, but in reality, it’s so limited it’s essentially useless. Or, the Department will expand a service, but the rate they pay providers is so low providers risk providing the service and running their programs at a loss.
-A parent added that with the rule changes, OT consulting is limited to once per month; she stated that her son had OT, and once a month is insufficient. This is a huge loss of concrete supports that were incredibly valuable.
Cullen: What a shame to see supports that were working very well be eliminated. Were these changes part of the recent Section 21 rule changes?
Nell Brimmer – Disability Rights Maine (DRM): They were included as part of Section 21 rule changes, but I believe they’ve been in place for quite some time. How long has this been in effect?
-It was stated that the changes were put in place in November 2016; however, MaineCare didn’t notify the Morrison Center about the changes, and staff were still receiving approvals until very recently.
Nell: This hasn’t been brought to our attention as an issue by individuals using the service.
Cullen: If they brought it to DRM, would it help?
Nell: Yes, if people call DRM (207-626-2774) reporting this as an issue we’d be happy to look into it.
-It was stated that there is an appeals process that could be utilized, however with the programs actually providing the service closing, this may not make a difference.
Nell: We see this issue constantly, where there aren’t providers for the services people want.
Cullen: Thank you for sharing this information. This will be in the minutes so hopefully people affected can reach out to DRM.
-A parent stated that she worries about what would happen to her son if something were to happen to her. Her son, who will be 22 years old next month, was in a placement that was inadequate in assisting him with some basic things. Luckily, she was able to get him into a different program, but this brings up fear of the unknown for the future. She stated that she doesn’t have family who could be there for her son after she’s gone, and it’s frightening. Another parent commented that’s the reason why everyone is around this table. A parent stated that McRae & Associates provides guardian and fiduciary services that may help fill some of the needs of families, as parents think of aging and what will happen to their children after their death; Teri McRae might be a good speaker for this group. A self-advocate stated that, when and where possible, building natural supports can help with planning for the future as well.
-A parent stated that this is essentially a two-fold problem – it’s not just a matter of finding someone, but also finding someone who’s capable of understanding most of the problems our children will face. It’s great to have good intentions, but also having the knowledge necessary to put those intentions into action is key.
Cullen: As Kim stated, this is essentially why we’re all here – we’re trying to figure out how to make the system work better, so we know that our children will be well cared for and continue to live full lives when we die.
Nell: DRM has advocates, and there is the Volunteer Correspondent Program (VCP), which can assist as well.
Nonny Soifer – Maine Developmental Services Oversight and Advisory Board (MDSOAB): The VCP provides volunteer correspondents who advocate and work with people when they don’t have someone else to fulfill that role. This is a wonderful program, but it’s not addressing the issue in perpetuity.
DHHS, Office of Aging and Disability Services (OADS) & Office of Child and Family Services (OCFS):
Cullen: I’ve had some recent correspondence with Commissioner Ricker Hamilton as well as with Amy MacMillan, Acting Director of OADS, over the past few weeks. Commissioner Hamilton wishes to represent DHHS at these meetings. It is great news that DHHS will be at the table; however, it appears the Commissioner won’t be able to attend a meeting until April. I’m in the process of working with his scheduler to see if he can attend the April meeting and be able to stay for its entirety, as we haven’t had DHHS representation since the September meeting, and parents have expressed the desire to continue discussions with the Department. This Coalition is trying to have the system which cares for our loved ones change for the better; this task is made more difficult when all the key players aren’t around the table. 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 here, so we can have an inclusive dialogue. We’re all here to make the system better. It seems to me that when we as parents have less information we’re more prone to be anxious and worry; more information sharing would save us all a lot of distress. I think DHHS wants to help with that; it is a great sign the Commissioner wants to be here.
State Legislature Update
Jennifer Putnam: There’s a lot going on and there are a lot of bills on our radar:
- LD 323, carried over from last year, would completely fund the waitlist. Legislators are aware that the provider system is not currently equipped to take on the influx of people who would be looking for services should this occur. Providers are already having a difficult time offering the expanded services under Section 29 due to capacity.
- LD 967, which would address the second year of funding for DSP rate increases, currently set to sunset on 6/30/18, is currently on the Appropriations Table. My understanding is that this is a priority for legislators on both sides of the aisle. It would cost approximately $26 million to get back to 2007 rates, plus an increase for inflation. Last year, after numerous revisions and negotiations, approximately $11.5 million was included in the budget to fund rate increases for three-quarters of the first year of the biennium. The bill was then carried over to address the second year of funding. We’re hopeful that this will be prioritized because in my conversations with legislators they felt the one-year funding was leaving things undone. The Legislature will also be considering annual adjustment of rates, which is critical so rate-increase bills won’t have to be proposed every biennium.
When the 2007 rates were calculated they were set at approximately $10 per hour, when minimum wage was around $6 per hour. Currently, the temporary increase has the rates just over $10 per hour, directly competing with other minimum wage employers, making it even more difficult for providers to hire and retain staff. This is responsible for the higher DSP turnover rate.
-A parent stated that the high rate of staff turnover has tremendously affected her. It was asked what parents can do to support this bill.
Jennifer: You can reach out to and educate your legislators on how this affects you, your family, and the person in your family receiving services. You can also reach out to anyone on the Appropriation and Financial Affairs Committee. I spoke with the House Republican Caucus about a week ago; it’s clear that everyone understands the issue, they just have to find the money.
Other bills we’re watching include:
- LD 1676, which originally read as a bill to re-establish the office of advocacy, has been completely amended to instead 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 by the U.S. Department of Health and Human Services Office of Inspector General, the Administration on Community Living, and the Office for Civil Rights. This new, joint report reviews the audits conducted in Connecticut, Massachusetts, and Maine, and makes further recommendations, one of which was a mortality review panel.
- LD 1709 would give the MDSOAB access to reports, to which it is already supposed to have access per existing statute; however, this is not occurring.
- LD 1820 would increase the reimbursement rate for Section 28 services. Burns and Associates did a rate study, which proposed cuts to various services. The Legislature approved a moratorium on those cuts, however Burns proposed a rate increase for Section 28, which has yet to occur. This bill would address that. The public hearing is tomorrow at 1pm in front of the Health and Human Services (HHS) Committee.
- LD 1737 would increase med management service under Section 65 by 25%. This would help remedy the inadequate reimbursement for this service, currently causing many providers to operate with huge loses.
-It was asked if there was an update on the Adult Protective Services (APS) and Critical Incident System proposed rules.
Jennifer: The deadline has passed for written comments. Though, I’m wondering if the Department might change those rules more than they usually do at the conclusion of the public comment period based on the new joint report.
-It was stated that there is also a bill to weaken the ADA (Americans with Disabilities Act) at the federal level.
-It was stated that there are a lot of bills and it’s hard to keep everything straight, even for legislators. It’s useful to educate legislators, but the way in which this is done and the language used is important. For instance, the MaineCare expansion bill has also been said to have a $26 million price tag, so simply referencing the “$26 million MaineCare bill” could be confusing.
Jennifer: This is very true. The Legislature has lumped LD 967 and Representative Ellie Espling’s bill together and have been referring to them colloquially as the “Direct Care Workers bills.”
-It was asked if the Legislature understands that the way in which the rate was calculated was not as helpful as they intended.
Jennifer: They do – going back to the rate methodology has been helpful. There’s also a bill to slow down the increases to the minimum wage, and some are reporting that this would assist with the DSP rate issue. This would not solve the problem; the minimum wage is one piece of a very large puzzle.
-It was asked if this bill accounts for the minimum wage continuing to increase, and would thus eliminate the need for future corresponding rate increases.
Jennifer: Theoretically, yes. My understanding is that even when annual adjustments are put in statute you end up going back to the Legislature to ensure it’s done.
Cullen: It’s very important to reach out to your legislators. When they hear from a few people on one issue it really resonates with them as being important. Reach out, tell your stories – this is the most effective way to help legislators prioritize the issues that affect you and your family.
Disability Rights Maine (DRM) Update:
Nell Brimmer: We are following LD 123, which would repeal and replace the entire probate code with a uniform probate code, which references supported decision making explicitly.
Margaret Cardoza: DRM has started Partners for Positive Change, which met and will be creating strategic plans.
Nell: DRM provides client-directed advocacy. We work one-on-one with individuals, so we need to hear from people to inform and direct our work.
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 so the Appropriations Committees can negotiate an omnibus bill for the remainder of FY 18. The budget agreement provides some relief from sequestration – a mechanism for automatic across-the-board cuts designed to be such a bad idea Congress would never let it come to fruition. We have been operating under a CR since 10/1/17, and as such Congress hadn’t done anything to solve for 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. Though there is not complete parity between Defense and Non-Defense Discretionary (NDD) sequestration relief, with Defense funding seeing a larger increase, NDD programs will receive a $63 million increase for FY 18, and $68 billion increase in FY 19. With this, in the next couple of months we hope to see more funding for programs such as HUD. We’re still waiting to see what happens based on the tax bill that became law, and whether we’ll see across-the-board cuts to programs, due to Senate PAYGO rules tied to the deficit.
Additionally, President Trump will unveil his FY 19 budget today. HUD Secretary Ben Carson is planning, through the FY19 budget request and accompanying legislation, to propose increasing rent contributions for all people in all HUD-subsidized homes from 30% to 35% of their income, and including work requirements. This would affect people who receive Section 8 – people on very finite, limited incomes.
Housing Update:
Cullen: I understand that the HUD 811 program is finally going to hit the streets, after receiving funding more than three years ago. In Maine, this program targets people receiving Section 21 and 29 services. I hope to have an update on this program at a meeting in the near future.
Handouts/announcements:
The next meeting will be on March 12, 2018
Featured Speaker & 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).