April 9, 2018
Minutes
Minutes
Present: Joanna Bulger, Mary Chris Semrow, Ann Long, David Cowing, Debbie Dionne, Kim Humphrey, Diane Boas, Jodi Benvie, Paul Henton, Tammy Pike, Margaret Cardoza, Suzanne Burke McKay, Betsy Mahoney, Leighann Gillis, Peter Stuckey, Jerry Silbert, Bryan Gordon, Vicky Shaw, Erin Rowan, Abbie Tanguay, Anat Levey, Julie Brennan, Mike Chapman, Kathy Adams, Emily Milo, Katie Bennett, Andy Taranko, Lydia Dawson, Ed & Suellen Doggett, Sanchia Snyder, Anita LaBerge, Cullen Ryan, and Vickey Rand. Via Zoom – (Bangor): Steve Johnson. (Sanford): Brenda Smith. (Winthrop): Cathy Dionne. (Auburn): Ann Bentley and Darla Chafin. (Brunswick): Colleen Gilliam, Ray Nagel, and Holly Randall. (Farmington): Darryl Wood and Kristin McPherson. (Kittery): Dennis and Debbie Dean. (Waterville): Pam Cairnie. 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: Featured Speaker: Jodi Benvie, Support Coordinator, KFI South, www.kfimaine.org Topic: Can Plans and other effective strategies for independence.
Cullen: Today we have Jodi Benvie, a Support Coordinator with KFI South, here to talk about Can Plans and other effective strategies for independence. Jodi has been working in the field for quite some time, and I’ve had the pleasure of watching her in action in different roles over the years. I’ve been constantly amazed with her knowledge and knowhow. She now works for KFI and has been providing services for my son, Cam. As service providers have been having issues hiring and retaining direct support professionals (DSPs), I’ve watched more than 40 people working with my son come in and out of his life. In recent months, between staff changes, Jodi has hopped in and worked with Cam. It’s been amazing to watch his capabilities and skill level grow as a result of such a skilled professional – I’ve watched my son transform into a more capable young man, with increased self-confidence and independence, doing things I never imagined he could do. One day, Cam was at home and I had to go to a meeting before he would be picked up for his program. He had to get himself fed, clothed, brush his teeth, be by the door, and watch for his ride to arrive. My meeting ran until right before he was supposed to leave. I called him and asked if he was by the door, to which he replied he was not. I then asked him if he was in a car, to which he responded proudly, that yes, he was. He was on his way to his program, and he had done all of the tasks he was supposed to complete by himself for the first time ever. This was the first glimpse I had that my son could potentially live on his own. I had never imagined that, and something changed for me. Through Jodi’s work with my son I learned about “Can Plans.” We had a great presentation two months ago on a similar concept of scaffolding, developing plans and strategies to allow people to have support and structure, and know what to do and when because it’s carefully planned out. We’re lucky to have Jodi here with us today, as she’s an expert in the field. Thank you for being here!
Jodi Benvie: It’s great to be here; I’ve missed coming to these meetings! I’ve worked in various different roles in different agencies over the past twenty-three years. When I worked for Disability Rights Maine (DRM), I often didn’t hear about all of the wonderful things going on at agencies across the state. And, when you’re an advocate you often spend a lot of time telling people what they should be doing, and not having to actually do those things. These are some of the reasons I went to work for KFI, as a Career Planning Specialist. I will have been with KFI for four years in June. When Cullen asked me to present on Can Plans I took a step back and realized it’s bigger than that – it’s really about setting people up for success. We talk a lot about this during transition planning – I like to look at what the framework for the rest of the world looks like, at that transition from high school to adult life, and work that into our plans and strategies.
Begin Presentation (Click here to view the presentation)
Collaboration: Every one of us who works in this field has a reason why they’ve arrived where they are – it’s because we’ve cared about something or someone enough to devote our lives to human services work. If someone is successful, we all celebrate that; success is success. I want to foster a spirit of collaboration and information sharing to deliver the best services and support possible.
Collaboration with family members: I worked with a man around my age, and his parents stated that no one was doing successful job development for him. So, I went to his house and interviewed his parents. They had been arranging work for him to do for years, though it was all through relationship work and under the table. I interviewed them, and his mom said, “I don’t know why you’re here to interview me.” I told her that she had been doing job development for her son for years; she’s the best job coach. She had incredible amounts of information regarding what worked well and what did not work for him.
Collaboration with home support staff: Home support staff are also vital sources of information. It was discovered someone I had been working with had a learning disability; we had to dig deep to discover this, her current staff didn’t know. One of her tasks was studying. So, I sat down with her home support staff, and said these are the four ways to teach her this material. I connected with her staff a week later and discovered she had difficulty remembering things after a short period of time. We worked together to figure out that she has an incredible physical memory for doing things. If she could get her hands on something, she could remember it. Without the collaborative group process, this information would’ve taken forever to figure out.
Collaboration with employment support staff: Think about the role that work plays in all of our lives. Our jobs become central to everything in our lives. How much of the rest of our days are related to things that have to do with work in some, even tangential, way? This is common for all of us. Communication between employment specialists often occurs infrequently, sometimes with no communications in-between quarterly meetings. Getting a job because you know someone or have an “in,” is fairly common. I have job developers reports back weekly, log the information they provide, and that information is then shared between other staff so that the individual is getting consistent, constant little message throughout the week.
Collaboration with community support staff: There is a wide variety of community support programs in Portland. There are people who are really gaining some useful skills, and there’s a lot of social interactions going on in programs. However, people then come home and don’t see these people with whom they’re making connections until the next time they go to their program. We ought to be saying, “is that someone you want to hang out with on the weekends?” And, “Would you like to have her over for dinner one night?” It’s beneficial to do some investigative work to determine where we can make more connections outside of the structured hours of community support.
Collaboration with counselors: We support some people who, with their explicit permission, have allowed us to connect with their counselors. It doesn’t mean that we tell each other everything that’s going on, that’s still confidential. We have very specific conversations with the person, providing applicable reminders, such as, “you want to make sure you talk to your counselor about this.” The people we support don’t always remember that the stress they had yesterday is affecting them today. I support a young woman who has very crippling anxiety. She worries that she is going to get a disease. She is this really bright person who wants a lot more for her life, and her anxiety gets in her way. We asked if we could chat with her counselor to see what kind of things her counselor is talking to her about regarding her anxiety. She signed a release, and we discovered that there is specific language her counselor is using around her anxiety, and when she does a certain thing there are messages her counselor delivers to follow through. Now that staff have this information, this young woman is getting those messages from staff three days a week in addition to the messaging from her counselor. Her mom has a really hard time following through, saying things like “well that’s great, her staff can talk her out of her anxiety, but they get to leave, I’m still here.” This is very common for parents; staff get to leave, parents have a very different relationship structure. So, we sat down with her with her mom present, and said, “these are the things we’re doing, this is the language the counselor gave us to use. Do you think it would help if your mom said those things?” We try to pull the family into the conversation so we can all get closer to the same page.
Teaching: I’m a big fan of the work of John and Connie O’Brien, who have written books regarding the Person-Centered Planning (PCP) process, among other things. They exceptionally explain the PCP process and how to do it well. There’s an overlay you put over any goal, which has to do with building capacity and sharing community spaces. Basically, looking at how someone can achieve the goal while increasing the person’s capacity by looking at where they are going to do this activity, the chance they will connect with other people, how this is making them look their best, promoting strong social roles, and how they’re being perceived by other people.
I support someone who needs to have a suit, and have it dry-cleaned, for his job. This is someone who previously constantly wore sweats. It was important for everyone who supports him to have the same expectations around work, and consider how people expect him to look and act in the work environment.
People are prone to say their goal for their children is independence. But what does that really mean? Everyone defines independence differently. I work with someone who wants to learn how to safely cook by herself, and someone else who wanted to be able to walk downtown by herself. Cam wanted to be able to volunteer more independently than he had been. It’s about looking at the person’s goals, but also going back to expectations. Cullen’s son was very excited that I was going to talk about him today; he even wants a report back on how it went! Using Cam as an example – think about any 21-year-old person, who lives at home, and whose parents are working fulltime. When that person wakes up in the morning what are the expectations? We asked, what are Cam’s responsibilities as a 21-year-old adult in this situation? I would hope that if anyone in this room were in this situation, you might do a few more dishes, help out with groceries, do something to contribute to the household. What happens when our kids are older, and we start talking about what they want to do when they grow up? We’re not talking about what that adulthood truly means. So, we’ve worked to set similar expectations to what any typical person in situations would have. So, Cam is responsible to helping out, asking his parents if they need groceries, and then going to get them, etc. Then we learn how to work to support him so he can meet those expectations and perform those tasks. We discovered that Cam learns really well when you show him how to do something and then he does it. It turns out he also learns very well when you show him a video of him doing things. We support someone else who does best when you lay out every step in a precise, detailed fashion. Everyone’s learning style is different. You don’t have to be a teacher to do this – just keep trying things until they work.
How do you teach supporters to teach? It’s about a good match, and it’s about supporting the staff. If I have taught Cam how to do something successfully, for instance a task while volunteering at CHOM, his staff will shadow me working with him when he volunteers on Wednesdays, and then the next Wednesday I’ll shadow the staff performing the role I had fulfilled. It takes more time, but now I have confidence that it will go well. We also like to have impromptu staff meetings, which allows for even more collaboration and information sharing.
Technology: I love the way technology is changing people’s lives. When Maine approved the assistive technology assessments and the purchase of assistive technology equipment we got on board immediately. If someone has an iPhone (or other mobile device) there’s a lot of things they can do. For example: I work with a woman who has grown up without the expectation that she would work full-time, who lives independently in Portland, has staff eight hours per week, and has a job. When we first discussed employment, she thought she would be able to work about 20 to 25 hours per week. She currently works six hours per week, and her employer wants her to work more! However, she felt like she didn’t have enough time to increase her work hours. I sat down with her and used myself as an example. I asked her how I was able to be there with her that day, how I was able to have time with my family at home, how I found time to go running, and so on. The answer was that I put it all on my calendar. We use Google Calendar, which is very simple and user friendly, and she color-codes everything – different colors for work, time with her mom, the gym, grocery shopping, physical therapy, doctors’ appointments, etc. She marks up her whole week so she can visually see there’s time left. Even on the busiest weeks she could add another nine hours to her work schedule; though, we didn’t tell her that, we had her figure it out herself. She’s now increased her work hours to nine per week. The visual allowed her to see there is space. Timers are another great tool. We support some people who don’t like when we tell them it’s time to leave somewhere. We have them use their phone, pick out a chime, and set either an alarm or timer. The timer is telling them to leave, not the staff; we removed the power dynamic from the equation. Voice-to-text is also very helpful. Cam can speak very clearly, but he does have some words that are hard to understand. Siri is slowly learning from this. He is now able to use voice-to-text all by himself. We support another woman who had a hard time typing her messages. She had feedback to tell us about her services, but it was hard to understand the messages she was sending. We taught her to use the voice-to-text feature, and now she sends these beautiful emails and texts with no help from us. Cam sometimes has a hard time reading the message when he receives a text. There’s a voiceover feature on the iPhone, but it’s difficult to use because you have to tap the word twice; it’s not intuitive and very perplexing. I found an app that allows Cam to press and hold text, which then creates a pop-up message prompting him to press to play the audio of the text message. He can listen to it as many times as he needs and/or desires. Google Maps is helpful because it doesn’t just tell you how to drive somewhere, it tells you how to walk there and which bus to take. Sometimes people don’t want to walk and hold their phone, so we get them a headset, which allows them to put their phone in their pockets and have audio prompts tell them where to go and when. We’ve found apps that help people count money and change as well. There’s an entire industry of apps related to disabilities; there are some wonderful resources out there.
What Cullen referred to earlier is the Can Plan iPhone app. I’ve included screen shots of the app, which illustrates an example of Cam’s tasks throughout the course of a couple days. Each task includes a photo of Cam that we took of him doing the tasks. He can also record his voice providing instructions for the tasks – he can record his own voice saying, “put on deodorant.” Neither Cullen nor I knew that Cam was checking this in the morning, but you can look at it later in the day to see things checked off. This was surprising but wonderful! The app allows you to pick all of the tasks, they are completely customizable. Cam and I sit in the parking lot at his community support program, and I ask him what day it is, what we do, and where we are going. He opens up the app on his phone and gets the visual reminder of what to do. While volunteering at CHOM, I found out that staff had been entering the code to the recycling room. I found out that staff had accidently taken home the recycling key, which prompted me to ask why Cam didn’t have the key. So, we took numerous videos of him entering the code until he got it right. And, with all of the windows I can watch him from the 4th floor, while he goes by himself to the recycling room, enters the code, and uses the key to access the recycling bin. In instances where he gets the code wrong, or needs extra assurances, he can look up and see me giving him two thumbs-up! The Can Plan has been a wonderful tool for three people we support, who find that series of tasks and concrete instructions helpful.
Discussion:
-It was stated that school is a vital source of information. Spending years with the student you learn a lot about the individual, the family, peers, etc.
Jodi: Yes, it is! I meant to include school in my presentation. There’s also children’s versus adult services. If you don’t have the adult service provider in place before the individual transitions, you need to be sure to have releases so you can go back and get that vital information from the school.
-A former special education provider stated that he would encourage transitioning to an adult case manager at age 18, so kids weren’t transitioning from school and transitioning case managers at the same time. He stated he would also hold the IEP and PCP meetings consecutively, closing the IEP meeting and then immediately beginning the PCP meeting. He stated that this method allows for all the players to be around the same table, allowing everyone to get the complete picture.
-It was asked if Jodi had suggestions about conflict management around teaching staff.
Jodi: Building teams is hard work. Laurie Kimball, Director of KFI South, designed an entire three-hour workshop on supporting teams. Teams need buy-in to be successful. We have one woman who gets support from four different people, and each one of those team members know the role they play. Identifying what people are good at and what their value is to the team is imperative. Collaboration with the person is imperative as well. Staff need to be empowered to talk directly to the person if they’re having problems, and be able to say, “Every time you do this, it seems very challenging for you. I’m trying to figure out how best to help you. Let’s talk.” The collaboration is always about bringing the person into the conversation.
-It was asked if the person receiving services participates in the decision making, including selecting staff.
Jodi: I always meet-and-greet before shadowing. You can have a staff person who’s wonderful with Suzie, but terrible with Tammy. It’s all about a good match. Also, for people with challenging behaviors, dimagine.com has a variety of helpful materials, which are free.
- It was asked what happens when things go off-track with the Can Plan, for instance, what to do if a ride doesn’t come.
Jodi: The neat thing is, you can build in whatever you want. We support one person who needs to have a break and we ask him to include his breaks in the plan. You can also insert coping skills, including pictures or videos. We’re working on this with someone right now, identifying what we’re going to do, and practicing it over and over again, with tons of role-playing, including flipping the situation. Coping skills or emergency plans don’t ever work unless you practice them when you’re calm.
Cullen: Thank you Jodi, you’ve given us a lot to think about. Thank you for your presentation, and putting it together in such a thoughtful way. It’s neat to see what people can achieve when they’re supported in the right way. As I’ve said here, I still brush my son’s teeth, because I want to know that it’s done and done well. This is a transition for me as a parent as well, but the Can Plan and building scaffolding is helping us to figure it out. Thank you again, well done!
End of presentation. (Round of applause)
DHHS, Office of Aging and Disability Services (OADS) & Office of Child and Family Services (OCFS):
Cullen: Commissioner Hamilton was supposed to be here today, but was called to the Legislature at the last minute. He expects to be in attendance at next month’s meeting. As such, we have cleared 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. 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.
-A parent stated that she received letter and a form to complete for her child, who is currently on the Section 21 waitlist. The letter states that if a response isn’t received within six months the person will be removed from the waitlist. The form asks questions pertaining to continued interest in remaining on the waitlist, the individual’s current living situation, risk of abuse, neglect, or exploitation, reportable events, etc. It was stated that this is part of the new annual update, and the form can be completed by the case manager. (Click here for an example of the letter and related form.)
Lydia Dawson – Maine Association for Community Service Providers (MACSP): This is part of the changes in the most recent rule changes. The rules require annual updates confirming interest in remaining on the waitlist; you don’t have to follow the form prescriptively.
-It was asked if there’s any chance the responses on the form could move someone up or down the waitlist. It was stated that a request for reconsideration still must be completed to officially change someone’s priority status, but this may be a way in which the Department determines order within priority statuses.
Cullen: Commissioner Hamilton has asked that we submit written questions in advance of the Department’s attendance at these meetings. Perhaps it would be advantageous to ask questions about this form so he can provide more information when he attends. (Click here for the list of questions compiled for Commissioner Hamilton and the Department, as of the time of this meeting).
-It was stated that there is a rumor floating around that Priority 1 is being frozen until the Legislature makes decisions about some of the bills up for consideration. A provider stated her agency had two new offers come through last week, so it appears that this rumor is without merit.
State Legislature Update:
Lydia: We’re following a lot of bills currently up for consideration in the Legislature:
-It was asked if advocates for these bills are working in tandem with the campaign for the universal home care bill, which would guarantee home care and increase wages.
Lydia: The base for that bill is much broader. The two bills are still alive simultaneously. The future of LD 967 still looks very positive, and legislators are aware the rate increases will sunset if they do not act. It’s never a bad thing to contact your legislators and remind them that this is important to you. However, we should not turn into an angry mob! Right now everyone is supportive, but we can continue to remind them about what they’ve promised us.
Peter Stuckey: Before they can get to the bills on the Table, they have to pass a supplemental budget. The Table is a tool that legislators use to relieve the pressure on themselves. At the end of the session, the pressure builds. How you see things today and how things are going to be when that Table gets worked are incredibly different. There shouldn’t be anger, but there should be constant reminding that there is a bill on the Table and it’s critical that it come off the Table and be funded. Everything on the Table has a constituency that worked incredibly hard to get it that far, and they think it’s the top priority.
Lydia: The Maine Developmental Services Oversight and Advisory Board (MDSOAB) still has two bills alive in the Legislature: LD 1676, which would create a Death and Serious Injury Review Panel, had a divided report out of the Health and Human Services Committee; and LD 1709, which would give the MDSOAB access to reports, to which it is already supposed to have access per existing statute, passed the House and Senate and is currently on the Table.
Cullen: According to an action alert from Jennifer Putnam, who couldn’t be here today, LD 1709 could potentially face a veto from the Governor, which would require an additional 11 votes in favor to override. Click here for more information.
Federal Update:
Cullen: Congress enacted an FY 18 omnibus budget bill, which was very favorable to HUD programs, including increases to Section 8 in all forms, HOME, CDBG, and the Section 811 program, all of which provide housing to the populations about whom we care.
Handouts/announcements:
The next meeting will be on May 14, 2018
Featured Speakers: Ricker Hamilton, Commissioner, DHHS, Topic: Services for people with ID/DD,
and/or Carol A. Snyder, Maine Field Human Resources Manager, and Amy Wilson, Facility Manager, LogistiCare. Topic: LogistiCare 101
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: Featured Speaker: Jodi Benvie, Support Coordinator, KFI South, www.kfimaine.org Topic: Can Plans and other effective strategies for independence.
Cullen: Today we have Jodi Benvie, a Support Coordinator with KFI South, here to talk about Can Plans and other effective strategies for independence. Jodi has been working in the field for quite some time, and I’ve had the pleasure of watching her in action in different roles over the years. I’ve been constantly amazed with her knowledge and knowhow. She now works for KFI and has been providing services for my son, Cam. As service providers have been having issues hiring and retaining direct support professionals (DSPs), I’ve watched more than 40 people working with my son come in and out of his life. In recent months, between staff changes, Jodi has hopped in and worked with Cam. It’s been amazing to watch his capabilities and skill level grow as a result of such a skilled professional – I’ve watched my son transform into a more capable young man, with increased self-confidence and independence, doing things I never imagined he could do. One day, Cam was at home and I had to go to a meeting before he would be picked up for his program. He had to get himself fed, clothed, brush his teeth, be by the door, and watch for his ride to arrive. My meeting ran until right before he was supposed to leave. I called him and asked if he was by the door, to which he replied he was not. I then asked him if he was in a car, to which he responded proudly, that yes, he was. He was on his way to his program, and he had done all of the tasks he was supposed to complete by himself for the first time ever. This was the first glimpse I had that my son could potentially live on his own. I had never imagined that, and something changed for me. Through Jodi’s work with my son I learned about “Can Plans.” We had a great presentation two months ago on a similar concept of scaffolding, developing plans and strategies to allow people to have support and structure, and know what to do and when because it’s carefully planned out. We’re lucky to have Jodi here with us today, as she’s an expert in the field. Thank you for being here!
Jodi Benvie: It’s great to be here; I’ve missed coming to these meetings! I’ve worked in various different roles in different agencies over the past twenty-three years. When I worked for Disability Rights Maine (DRM), I often didn’t hear about all of the wonderful things going on at agencies across the state. And, when you’re an advocate you often spend a lot of time telling people what they should be doing, and not having to actually do those things. These are some of the reasons I went to work for KFI, as a Career Planning Specialist. I will have been with KFI for four years in June. When Cullen asked me to present on Can Plans I took a step back and realized it’s bigger than that – it’s really about setting people up for success. We talk a lot about this during transition planning – I like to look at what the framework for the rest of the world looks like, at that transition from high school to adult life, and work that into our plans and strategies.
Begin Presentation (Click here to view the presentation)
Collaboration: Every one of us who works in this field has a reason why they’ve arrived where they are – it’s because we’ve cared about something or someone enough to devote our lives to human services work. If someone is successful, we all celebrate that; success is success. I want to foster a spirit of collaboration and information sharing to deliver the best services and support possible.
Collaboration with family members: I worked with a man around my age, and his parents stated that no one was doing successful job development for him. So, I went to his house and interviewed his parents. They had been arranging work for him to do for years, though it was all through relationship work and under the table. I interviewed them, and his mom said, “I don’t know why you’re here to interview me.” I told her that she had been doing job development for her son for years; she’s the best job coach. She had incredible amounts of information regarding what worked well and what did not work for him.
Collaboration with home support staff: Home support staff are also vital sources of information. It was discovered someone I had been working with had a learning disability; we had to dig deep to discover this, her current staff didn’t know. One of her tasks was studying. So, I sat down with her home support staff, and said these are the four ways to teach her this material. I connected with her staff a week later and discovered she had difficulty remembering things after a short period of time. We worked together to figure out that she has an incredible physical memory for doing things. If she could get her hands on something, she could remember it. Without the collaborative group process, this information would’ve taken forever to figure out.
Collaboration with employment support staff: Think about the role that work plays in all of our lives. Our jobs become central to everything in our lives. How much of the rest of our days are related to things that have to do with work in some, even tangential, way? This is common for all of us. Communication between employment specialists often occurs infrequently, sometimes with no communications in-between quarterly meetings. Getting a job because you know someone or have an “in,” is fairly common. I have job developers reports back weekly, log the information they provide, and that information is then shared between other staff so that the individual is getting consistent, constant little message throughout the week.
Collaboration with community support staff: There is a wide variety of community support programs in Portland. There are people who are really gaining some useful skills, and there’s a lot of social interactions going on in programs. However, people then come home and don’t see these people with whom they’re making connections until the next time they go to their program. We ought to be saying, “is that someone you want to hang out with on the weekends?” And, “Would you like to have her over for dinner one night?” It’s beneficial to do some investigative work to determine where we can make more connections outside of the structured hours of community support.
Collaboration with counselors: We support some people who, with their explicit permission, have allowed us to connect with their counselors. It doesn’t mean that we tell each other everything that’s going on, that’s still confidential. We have very specific conversations with the person, providing applicable reminders, such as, “you want to make sure you talk to your counselor about this.” The people we support don’t always remember that the stress they had yesterday is affecting them today. I support a young woman who has very crippling anxiety. She worries that she is going to get a disease. She is this really bright person who wants a lot more for her life, and her anxiety gets in her way. We asked if we could chat with her counselor to see what kind of things her counselor is talking to her about regarding her anxiety. She signed a release, and we discovered that there is specific language her counselor is using around her anxiety, and when she does a certain thing there are messages her counselor delivers to follow through. Now that staff have this information, this young woman is getting those messages from staff three days a week in addition to the messaging from her counselor. Her mom has a really hard time following through, saying things like “well that’s great, her staff can talk her out of her anxiety, but they get to leave, I’m still here.” This is very common for parents; staff get to leave, parents have a very different relationship structure. So, we sat down with her with her mom present, and said, “these are the things we’re doing, this is the language the counselor gave us to use. Do you think it would help if your mom said those things?” We try to pull the family into the conversation so we can all get closer to the same page.
Teaching: I’m a big fan of the work of John and Connie O’Brien, who have written books regarding the Person-Centered Planning (PCP) process, among other things. They exceptionally explain the PCP process and how to do it well. There’s an overlay you put over any goal, which has to do with building capacity and sharing community spaces. Basically, looking at how someone can achieve the goal while increasing the person’s capacity by looking at where they are going to do this activity, the chance they will connect with other people, how this is making them look their best, promoting strong social roles, and how they’re being perceived by other people.
I support someone who needs to have a suit, and have it dry-cleaned, for his job. This is someone who previously constantly wore sweats. It was important for everyone who supports him to have the same expectations around work, and consider how people expect him to look and act in the work environment.
People are prone to say their goal for their children is independence. But what does that really mean? Everyone defines independence differently. I work with someone who wants to learn how to safely cook by herself, and someone else who wanted to be able to walk downtown by herself. Cam wanted to be able to volunteer more independently than he had been. It’s about looking at the person’s goals, but also going back to expectations. Cullen’s son was very excited that I was going to talk about him today; he even wants a report back on how it went! Using Cam as an example – think about any 21-year-old person, who lives at home, and whose parents are working fulltime. When that person wakes up in the morning what are the expectations? We asked, what are Cam’s responsibilities as a 21-year-old adult in this situation? I would hope that if anyone in this room were in this situation, you might do a few more dishes, help out with groceries, do something to contribute to the household. What happens when our kids are older, and we start talking about what they want to do when they grow up? We’re not talking about what that adulthood truly means. So, we’ve worked to set similar expectations to what any typical person in situations would have. So, Cam is responsible to helping out, asking his parents if they need groceries, and then going to get them, etc. Then we learn how to work to support him so he can meet those expectations and perform those tasks. We discovered that Cam learns really well when you show him how to do something and then he does it. It turns out he also learns very well when you show him a video of him doing things. We support someone else who does best when you lay out every step in a precise, detailed fashion. Everyone’s learning style is different. You don’t have to be a teacher to do this – just keep trying things until they work.
How do you teach supporters to teach? It’s about a good match, and it’s about supporting the staff. If I have taught Cam how to do something successfully, for instance a task while volunteering at CHOM, his staff will shadow me working with him when he volunteers on Wednesdays, and then the next Wednesday I’ll shadow the staff performing the role I had fulfilled. It takes more time, but now I have confidence that it will go well. We also like to have impromptu staff meetings, which allows for even more collaboration and information sharing.
Technology: I love the way technology is changing people’s lives. When Maine approved the assistive technology assessments and the purchase of assistive technology equipment we got on board immediately. If someone has an iPhone (or other mobile device) there’s a lot of things they can do. For example: I work with a woman who has grown up without the expectation that she would work full-time, who lives independently in Portland, has staff eight hours per week, and has a job. When we first discussed employment, she thought she would be able to work about 20 to 25 hours per week. She currently works six hours per week, and her employer wants her to work more! However, she felt like she didn’t have enough time to increase her work hours. I sat down with her and used myself as an example. I asked her how I was able to be there with her that day, how I was able to have time with my family at home, how I found time to go running, and so on. The answer was that I put it all on my calendar. We use Google Calendar, which is very simple and user friendly, and she color-codes everything – different colors for work, time with her mom, the gym, grocery shopping, physical therapy, doctors’ appointments, etc. She marks up her whole week so she can visually see there’s time left. Even on the busiest weeks she could add another nine hours to her work schedule; though, we didn’t tell her that, we had her figure it out herself. She’s now increased her work hours to nine per week. The visual allowed her to see there is space. Timers are another great tool. We support some people who don’t like when we tell them it’s time to leave somewhere. We have them use their phone, pick out a chime, and set either an alarm or timer. The timer is telling them to leave, not the staff; we removed the power dynamic from the equation. Voice-to-text is also very helpful. Cam can speak very clearly, but he does have some words that are hard to understand. Siri is slowly learning from this. He is now able to use voice-to-text all by himself. We support another woman who had a hard time typing her messages. She had feedback to tell us about her services, but it was hard to understand the messages she was sending. We taught her to use the voice-to-text feature, and now she sends these beautiful emails and texts with no help from us. Cam sometimes has a hard time reading the message when he receives a text. There’s a voiceover feature on the iPhone, but it’s difficult to use because you have to tap the word twice; it’s not intuitive and very perplexing. I found an app that allows Cam to press and hold text, which then creates a pop-up message prompting him to press to play the audio of the text message. He can listen to it as many times as he needs and/or desires. Google Maps is helpful because it doesn’t just tell you how to drive somewhere, it tells you how to walk there and which bus to take. Sometimes people don’t want to walk and hold their phone, so we get them a headset, which allows them to put their phone in their pockets and have audio prompts tell them where to go and when. We’ve found apps that help people count money and change as well. There’s an entire industry of apps related to disabilities; there are some wonderful resources out there.
What Cullen referred to earlier is the Can Plan iPhone app. I’ve included screen shots of the app, which illustrates an example of Cam’s tasks throughout the course of a couple days. Each task includes a photo of Cam that we took of him doing the tasks. He can also record his voice providing instructions for the tasks – he can record his own voice saying, “put on deodorant.” Neither Cullen nor I knew that Cam was checking this in the morning, but you can look at it later in the day to see things checked off. This was surprising but wonderful! The app allows you to pick all of the tasks, they are completely customizable. Cam and I sit in the parking lot at his community support program, and I ask him what day it is, what we do, and where we are going. He opens up the app on his phone and gets the visual reminder of what to do. While volunteering at CHOM, I found out that staff had been entering the code to the recycling room. I found out that staff had accidently taken home the recycling key, which prompted me to ask why Cam didn’t have the key. So, we took numerous videos of him entering the code until he got it right. And, with all of the windows I can watch him from the 4th floor, while he goes by himself to the recycling room, enters the code, and uses the key to access the recycling bin. In instances where he gets the code wrong, or needs extra assurances, he can look up and see me giving him two thumbs-up! The Can Plan has been a wonderful tool for three people we support, who find that series of tasks and concrete instructions helpful.
Discussion:
-It was stated that school is a vital source of information. Spending years with the student you learn a lot about the individual, the family, peers, etc.
Jodi: Yes, it is! I meant to include school in my presentation. There’s also children’s versus adult services. If you don’t have the adult service provider in place before the individual transitions, you need to be sure to have releases so you can go back and get that vital information from the school.
-A former special education provider stated that he would encourage transitioning to an adult case manager at age 18, so kids weren’t transitioning from school and transitioning case managers at the same time. He stated he would also hold the IEP and PCP meetings consecutively, closing the IEP meeting and then immediately beginning the PCP meeting. He stated that this method allows for all the players to be around the same table, allowing everyone to get the complete picture.
-It was asked if Jodi had suggestions about conflict management around teaching staff.
Jodi: Building teams is hard work. Laurie Kimball, Director of KFI South, designed an entire three-hour workshop on supporting teams. Teams need buy-in to be successful. We have one woman who gets support from four different people, and each one of those team members know the role they play. Identifying what people are good at and what their value is to the team is imperative. Collaboration with the person is imperative as well. Staff need to be empowered to talk directly to the person if they’re having problems, and be able to say, “Every time you do this, it seems very challenging for you. I’m trying to figure out how best to help you. Let’s talk.” The collaboration is always about bringing the person into the conversation.
-It was asked if the person receiving services participates in the decision making, including selecting staff.
Jodi: I always meet-and-greet before shadowing. You can have a staff person who’s wonderful with Suzie, but terrible with Tammy. It’s all about a good match. Also, for people with challenging behaviors, dimagine.com has a variety of helpful materials, which are free.
- It was asked what happens when things go off-track with the Can Plan, for instance, what to do if a ride doesn’t come.
Jodi: The neat thing is, you can build in whatever you want. We support one person who needs to have a break and we ask him to include his breaks in the plan. You can also insert coping skills, including pictures or videos. We’re working on this with someone right now, identifying what we’re going to do, and practicing it over and over again, with tons of role-playing, including flipping the situation. Coping skills or emergency plans don’t ever work unless you practice them when you’re calm.
Cullen: Thank you Jodi, you’ve given us a lot to think about. Thank you for your presentation, and putting it together in such a thoughtful way. It’s neat to see what people can achieve when they’re supported in the right way. As I’ve said here, I still brush my son’s teeth, because I want to know that it’s done and done well. This is a transition for me as a parent as well, but the Can Plan and building scaffolding is helping us to figure it out. Thank you again, well done!
End of presentation. (Round of applause)
DHHS, Office of Aging and Disability Services (OADS) & Office of Child and Family Services (OCFS):
Cullen: Commissioner Hamilton was supposed to be here today, but was called to the Legislature at the last minute. He expects to be in attendance at next month’s meeting. As such, we have cleared 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. 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.
-A parent stated that she received letter and a form to complete for her child, who is currently on the Section 21 waitlist. The letter states that if a response isn’t received within six months the person will be removed from the waitlist. The form asks questions pertaining to continued interest in remaining on the waitlist, the individual’s current living situation, risk of abuse, neglect, or exploitation, reportable events, etc. It was stated that this is part of the new annual update, and the form can be completed by the case manager. (Click here for an example of the letter and related form.)
Lydia Dawson – Maine Association for Community Service Providers (MACSP): This is part of the changes in the most recent rule changes. The rules require annual updates confirming interest in remaining on the waitlist; you don’t have to follow the form prescriptively.
-It was asked if there’s any chance the responses on the form could move someone up or down the waitlist. It was stated that a request for reconsideration still must be completed to officially change someone’s priority status, but this may be a way in which the Department determines order within priority statuses.
Cullen: Commissioner Hamilton has asked that we submit written questions in advance of the Department’s attendance at these meetings. Perhaps it would be advantageous to ask questions about this form so he can provide more information when he attends. (Click here for the list of questions compiled for Commissioner Hamilton and the Department, as of the time of this meeting).
-It was stated that there is a rumor floating around that Priority 1 is being frozen until the Legislature makes decisions about some of the bills up for consideration. A provider stated her agency had two new offers come through last week, so it appears that this rumor is without merit.
State Legislature Update:
Lydia: We’re following a lot of bills currently up for consideration in the Legislature:
- LD 1870, which was originally the bill to move Child Development Services (CDS) from the Department to the schools, passed the education committee with a complete repeal/replace of the text. The bill would now create a stakeholder group to assess CDS. It appears that this bill, if enacted, would halt all of the proposed changes regarding CDS, with the exception of communities that applied for grants for pilot projects, the first two years of which are for research and data collection.
- LD 1820, the bill which would increase the reimbursement rate for Section 28 services, has passed the House and Senate, and is on the Special Appropriations Table (“the Table”) awaiting funding.
- LD 967, the bill which would increase the reimbursement rate for wages for DSPs (currently set to sunset 6/30/18), has passed the House and Senate, and is on the Table awaiting funding.
-It was asked if advocates for these bills are working in tandem with the campaign for the universal home care bill, which would guarantee home care and increase wages.
Lydia: The base for that bill is much broader. The two bills are still alive simultaneously. The future of LD 967 still looks very positive, and legislators are aware the rate increases will sunset if they do not act. It’s never a bad thing to contact your legislators and remind them that this is important to you. However, we should not turn into an angry mob! Right now everyone is supportive, but we can continue to remind them about what they’ve promised us.
Peter Stuckey: Before they can get to the bills on the Table, they have to pass a supplemental budget. The Table is a tool that legislators use to relieve the pressure on themselves. At the end of the session, the pressure builds. How you see things today and how things are going to be when that Table gets worked are incredibly different. There shouldn’t be anger, but there should be constant reminding that there is a bill on the Table and it’s critical that it come off the Table and be funded. Everything on the Table has a constituency that worked incredibly hard to get it that far, and they think it’s the top priority.
Lydia: The Maine Developmental Services Oversight and Advisory Board (MDSOAB) still has two bills alive in the Legislature: LD 1676, which would create a Death and Serious Injury Review Panel, had a divided report out of the Health and Human Services Committee; and LD 1709, which would give the MDSOAB access to reports, to which it is already supposed to have access per existing statute, passed the House and Senate and is currently on the Table.
Cullen: According to an action alert from Jennifer Putnam, who couldn’t be here today, LD 1709 could potentially face a veto from the Governor, which would require an additional 11 votes in favor to override. Click here for more information.
Federal Update:
Cullen: Congress enacted an FY 18 omnibus budget bill, which was very favorable to HUD programs, including increases to Section 8 in all forms, HOME, CDBG, and the Section 811 program, all of which provide housing to the populations about whom we care.
Handouts/announcements:
- Click here for information and an update on the ABLE Act in Maine.
- Click here for the MaineCalling program, featuring Lydia Dawson, Bonnie Jean Brooks, and David Cowing.
- There will be an upcoming E Street Info Session. Contact Mary Chris Semrow for more information ([email protected]).
- Click here for the Maine Parent Federation brochure.
- There is currently a vacancy available immediately at Winding Way, a 6-person group home in Scarborough, with 24/7 staff support provided by CASA. Winding way is located in a residential community, offers project-based Section 8 (somewhat unique), and is for individuals receiving Section 21 services. For more information, please contact Chandra at CASA: (207) 883-4864.
- A House for ME recently leased a building in downtown Kittery, and will have space for two new women with ID/DD in June. Click here for more information on A House for ME.
- April is Autism Awareness Month. The Walk for Autism is occurring on 4/29 at 6 different sites across the state. Click here for more information, including registration for the walk.
The next meeting will be on May 14, 2018
Featured Speakers: Ricker Hamilton, Commissioner, DHHS, Topic: Services for people with ID/DD,
and/or Carol A. Snyder, Maine Field Human Resources Manager, and Amy Wilson, Facility Manager, LogistiCare. Topic: LogistiCare 101
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).