November 9, 2020
Minutes
Minutes
Attendees via Zoom: Margaret Cardoza, Julie Brennan, Laura Cordes, Mark Kemmerle, Alli Vercoe, Brenda Smith, Ronnianne West, Ray Nagel, J Richardson Collins, Kristin McPherson, Mary Chris Semrow, Neal Meltzer, Sue Murphy, Teague Morris, Bryan Gordon, Craig Patterson, Jessica Cavanaugh, Staci Converse, Nancy Peavey, Ann Bentley, Teresa barrows, Kim Humphrey, Monique Stairs, Robin Levesque, Suellen & Ed Doggett, Stacy Lamontagne, Jennifer Putnam, Christopher Call, Amanda Hodgkins, Paula Bush, Helen Hemminger, Rachel Dyer, Julie Brennan, Debbie Dionne, Darla Chafin, Sarah Robinson, Betsy Mahoney, Vickey Rand, Cullen Ryan, and a few callers who did not identify themselves.
(Click here for a link to a recording of this meeting. Passcode: K5C5*+MZ)
Cullen Ryan introduced himself and welcomed the group. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted.
Featured Speaker: Jennifer Putnam, Executive Director, Waban. waban.org Topic: Remote Monitoring – An innovative way to provide services.
Cullen: Today we have Jennifer Putnam, Executive Director, and Brenda Smith, Adult Case Management Supervisor & Director of Special Projects, providing a presentation on a new remote monitoring program at Waban which offers an innovative way to provide services. Thank you for being here, Jennifer and Brenda!
Jennifer Putnam: As Cullen said, Brenda Smith, is here with me today as well; she’s the Director of Special Projects at Waban. We’re going to talk about our new remote monitoring system. This was Neal’s (the previous Waban Executive Director), brainchild and he spent many years developing the ideas and the parameters around what we wanted to see with a remote monitoring system. About 10 years ago with the beginning of smart homes, it became very clear technology could be used to support people with disabilities to provide more independence, and that it could also be more cost effective. All of the off-the-shelf systems seemed to be for people who already could support themselves fairly well independently and wouldn’t work for people with disabilities and people living in group homes. It took a long time to develop this in a way that would work well for people with ID/DD. With increasing pressure on state budgets etc., there is always the threat of services being cut. Remote monitoring is a way in which services can still be provided well, by someone who knows the individual well, while maintaining the continuum of care in a fiscally responsible way. A few years ago, we began working with a startup tech company and combined efforts. We wanted to ensure that the software we chose would fit individuals’ needs. In year one, we estimate we’ll serve 10 individuals, reducing staffing by 5.25 FTEs (Full Time Employees), and save an estimated $96,000 that year. In year two, we estimate 21 additional members being served, for a total of 31 members, and reduce staffing by a total of 15 FTEs. With the situation as it is now with the staffing crisis this cannot come soon enough. I want to show a short video which demonstrates remote monitoring in use. (Click here for the video.)
Jennifer: Brenda will walk us through our presentation to show you what we’re doing in Maine right now. This has been in effect for about two months, but it’s going very well thus far.
Brenda Smith: This is a new initiative for Waban. We’ve been working on it for about two years, with one of those years being the development phase where we were finally able to identify a platform, we thought could work for us. We’re calling this program TechWorks For Independence.
Begin Presentation (Click here for the presentation)
Brenda: Basically, we’re providing support with a decreased reliance on in-person staff. It’s increasing opportunities for independence and skill-building, while keeping a safety net for folks. We primarily use tablets, video cameras with sensors, and call buttons. The service is allowed under the PCP (Person Centered Planning) process. For folks with Section 21 and 29 remote monitoring is allowed under assistive technology (AT). We launched in September, starting with three individuals, folks living in Waban-supported apartments. We thought we’d start small, and those folks had resting overnight staff, so we thought it was a good place to start. We’re in the process of adding three more individuals. We’ve had a lot of great feedback. We have partnered with a remote monitoring service, which allows our staff to utilize the software from the TechWorks remote monitoring station, keeping that local knowledge and expertise which is so important. We have active, passive reactive, and intermittent monitoring. Active monitoring happens in real time with live support. Passive reactive monitoring is watching to see if there’s an event – this is mostly what we’re doing. This would be if something is triggered – an open front door, a smoke alarm, a bed alarm etc. Those events would trigger an alert and the staff person can call the individual instantaneously through the tablet. Intermittent monitoring is designed for scheduled check-ins, such as medication reminders, reminding people of appointments, etc. Right now, we’re working with Waban members, and this phase doesn’t include taking on new members outside of the agency, but that is something we’re going to expand to do – starting in York and Cumberland Counties. If you would like to get on a waitlist for this you can feel free to contact me ([email protected]).
We’re responsible for setting up the equipment in the individual’s home, the type and placement of which is determined by the PCP process and the assistive technology (AT) assessment based on the person’s desires and needs. Then, we do the monitoring, provide the software and hardware, some of which is paid for through the AT assessment and authorization process with the waivers. We have redundancies built in such as generators, battery back-ups, plans in place for Wi-Fi failures, etc. We also have admin features such as tracking, running reports, billing, and so on. As far as the person’s home, the software company supplies a base unit that goes into the person’s home, then the cameras and sensors needed are installed per the individual’s specific needs and desires. We have the ability to do two-way communication as well. Then we do the installation of the equipment in the person’s home and provide the training on how to use it. This remote monitoring allows the ability to retain our caregivers to provide supports in the community.
Discussion:
Jennifer: We’re open to any questions people have about the service. I think we’re the first organization in Maine doing this the way we are.
-It was asked what the protocol is for the passive reactive stage, and how available someone is when this happens.
Brenda: We have backup staff available located in another home in the evening, and that person can respond within ten minutes. It doesn’t mean that everyone would be providing the backup in that particular way. There’s room for flexibility for how backup plans are developed.
Jennifer: This is part of the assessment and is individualized. There’s also the backup to the backup plan, including software and people redundancies. We have the person doing the remote monitoring, their supervisor, and an on-call person.
-It was stated that they make devices for emergency calls such as buttons, etc. It was asked if that is available.
Brenda: Yes, that ability is there, and we have someone who uses a call button. It’s very individualized, based on medical history and the individual’s wants, needs, and desires.
-It was asked how they identify individuals interested in this type of support and how they get their informed consent.
Brenda: We started by talking to members in Waban apartments and their guardians. Then if they were interested, we moved it to the team planning process, involving the individual’s case manager because it all needs to be added into the PCP. Then that needs to be approved by the member and the guardian. They are part of the assessment process as well, so at any point they can make changes, decide they don’t want to do it, etc.
Jennifer: As a real-life example, we have a member who was worried about the cameras and people watching her and not understanding who would be doing that and how. We were able to take her and show her the remote monitoring center, to see what the direct support professional (DSP) was seeing which was very reassuring.
-There was a question regarding the data collected, how it will be used/analyzed, and to whom it will be made available.
Brenda: Right now, the majority of the data is what kind of alerts are being used, how it’s working, the response, etc. Tracking events during the night, the same way we have to for any waiver service. We’re starting out very small and as we grow, we’ll be digging deeper into that.
Jennifer: A lot of the data we’re collecting now is pulled into the system to optimize that individual person’s care and the way we’re handling any given situation. We’re in the pilot period. We’re looking at these different data points and trying to bring them together for a coherent offering of this service. On the back end there’s a lot of effort going into where everything is placed, what happens for that individual when something happens in the home etc. It takes time to learn people’s habits, what you need to be concerned about, what isn’t concerning, and so on. That’s where we are now with data collection, but I think moving forward we’ve done a lot of analysis over time about how this is going to help organizations which are struggling as I speak. There is a shortage of 40 FTEs currently, which is huge and concerning. Any way we are able to relieve some of that pressure is a benefit to not only the folks we’re serving this way, but also to other folks who cannot be provided care in this way but need that full-time in-person care.
-It was stated that we deal with such a broad spectrum of the human condition. It was asked if they have a broad profile identifying an ideal candidate for this type of service.
Jennifer: We did develop that. Generally speaking, we started with folks who did not require a lot of support and care during an overnight, so we could run multiple tests of the system while DSPs were still in the home, having both in-person and remote monitoring going simultaneously. The next step is to shift into some of that daytime provision of service.
Craig Patterson – OADS: We struggle with in-home staff being up to date on the PCP and being able to respond efficiently and effectively. What steps are being taken to ensure people doing the remote monitoring know that individuals’ need and thus able to respond well?
Jennifer: The DSPs we have monitoring arguably know the person’s PCP better than intermittent in-home care support person would. When you’re talking about the long-term and expanding this to more people, we have a lot of policies in place to ensure the DSP and the person on-shift knows the individual’s PCP. There are also electronic triggers as well – if it’s not in someone’s plans to pay attention if a front door opens then the remote monitoring wouldn’t step in, but if it’s a red flag it would. There are a lot of safeguards built in.
Craig: The more staff you have doing monitoring, the more they have to know individual plans.
Brenda: Triggers and events are also built into the platform. We don’t want to be in people’s business if it’s not needed. If there are concerning events or something that needs to be addressed, a note would be made to discuss this to see if it needs to be added as a trigger.
-It was asked if someone is struggling with using the system if there’s in-person training in the home.
Brenda: Yes, absolutely. We do provide training, and we’re working on increasing that now. Everyone in the home receives support around the training.
-A self-advocate stated that if she were asked about this, she would decline due to security issues. She stated that technology also has interruptions, can be hacked, and so on. The security issue and confidentiality aspect are concerning. It was stated that the lack of social interaction is concerning as well. Everyone has been practicing social distancing due to the pandemic, but people may easily forget how to have those in-person, social interactions which are key to community inclusion and living fulfilling lives.
Jennifer: So, a no is a no – a no by the individual is a no, a no by the team is a no. Looking at the broader context of safety – we’re not on the internet, we’re about as locked down in terms of technology as you can be. Nothing is foolproof, but just as we have multiple redundancies in place that I mentioned, we also have them for security to ensure as best we can that no one can back-door into the system. There are a lot of good minds working on that all the time and a lot of security in place. I think the service is geared towards someone who wants to make a choice, someone who doesn’t want people in their house. We often take this for granted, time alone in our own homes, and this service allows for that option for people with ID/DD who otherwise would have staff in their homes on a consistent basis. Assuming that everyone want DSPs around all the time just isn’t accurate. This is a good solution for some people, for some it’s not. The point about social interaction is a good one, and part of this is ensuring that the team is planning for social interaction, this service can’t be the only interaction.
-It was stated that we need to find a better phrase than “group home,” as it speaks to institutionalization.
-It was stated that this is telemonitoring not telehealth. It was asked if telehealth could be folded into this as well.
Jennifer: I don’t think they’re mutually exclusive. I could see this coordinating telehealth appointments down the road.
-It was asked if they are concerned that people will not be able to get services if they don’t want remote monitoring.
Jennifer: That’s an interesting question. I think people are already not getting services due to lack of staff. As we move forward with the staffing crisis, which has worsened throughout COVID, and will likely only get better as we move into winter. I do have concerns that people won’t be able to get services, but I don’t tie that to remote monitoring. In an ideal world if we’re in year two providing this service, we’d have 15 FTEs that could switch over to in-person services. In the world we’re in, those 15 FTEs don’t exist because we’re so short-staffed.
-It was asked if a home is moved to the remote monitoring service, and someone in the home doesn’t need it, if that person would be able to stay in that home.
Jennifer: If we moved an entire home to remote monitoring then everyone in the home would receive it. A motion sensor can’t determine who is triggering it, so it would go off regardless of who sets it off. This would start to play into individual choice when selecting where to live. Is remote monitoring something you desire? If not, then that home might not be ideal.
-A parent stated that appropriate use of 911 is a discussion had frequently with his son. It was stated that there might need to be training about when remote monitoring is the right avenue, and when 911 is the needed intervention. It was also mentioned that providing the emergency dispatch centers with this information would be helpful as well.
Jennifer: All of this is written into the script of the program for the individual. Someone who might not know when to call 911, if that’s the case this is a big part of remote monitoring, to identify that and call 911 for that individual if necessary. Or, for someone who is consistently calling 911 when there isn’t a need to do so, there would be a script in place regarding how to deal with that, of which the DSP would be aware, and those 911 calls would be redirected to the remote monitoring system.
-It was asked what would happen if someone has been assessed for not needing remote monitoring lives in an apartment with it.
Jennifer: If remote monitoring was setup in an individual apartment but the individual didn’t need it, it wouldn’t be used. If it was a Waban-owned apartment, we would likely bring someone into that apartment who needs the service because of the cost to install all of the equipment. That’s just a response off the top of my head.
Cullen: I want to thank you both for the presentation, you’ve given us a lot to think about. This is exciting and innovative. Parents have talked for a long time about increasing independence, and this is a modality that could assist with that. The thoughts expressed about security and confidentiality and group-home terminology are also great additions to the dialogue. It would be great to hear how this is going down the road, and how you pivot as you encounter challenges, which always occurs when you pioneer something. Thank you again!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: Most of our work has been talking about the increase in COVID cases around the state and the impact that is having on members, family members, providers, etc. We went a number of weeks with no outbreaks and now we have three currently occurring. I wanted to mention that we’ve gone back to weekly stakeholder calls; there is a link on our website for more information. However, when we would normally have a call from 3pm-4pm tomorrow, instead we will have Drs. Nirav Shah, Siiri Bennett, Stephen Sears hosting a call just to talk about congregate facility preparedness. It’s mostly geared towards agencies running those facilities, but anyone is welcome to listen (the meeting information was provided in the chat box). More OADS COVID-19 updates and related information can also be found on our website. We also shared updates on our website about the guidance that came out from the CDC, again focused on places where people live that’s more congregate in nature. The guidance that’s caused the most stress and concern is when there are a certain number of new cases, more than 16 per 10,000 people in each county, that county is then considered high. The guidance from the CDC is when counties are designated as high, community support programs in those counties close their programs until that designation changes. I’m happy to share those links to those guidance documents (click here the Maine CDC Guidance for Community Engagement of Congregate Settings, and click here for the FAQs regarding testing, visitation, and other community engagement activities in assisted housing settings). We are continuing to get questions around all of this and we’re updating our FAQs and other guidance documents pertaining to when a county moves to the high level of cases classification. Currently, Franklin, Washington, Waldo, Knox, and Somerset are considered high due to their numbers of new cases. As many know, we put forward an Appendix K Waiver to assist during the pandemic. At this point, the K Waiver will officially end on 2/28/2021. We’re hearing from CMS there will likely be opportunities to extend that depending on what’s happening, which we would like to be able to if we’re allowed. More to follow on that. I’m happy to say that there are many people on this call in our two workgroups that have started – Community and Innovations. The notes and the work we’re doing in those workgroups will be posted to the website once it’s available.
Craig: We have two addition workgroups, which will start in late January 2021: Quality Assurance/Quality Improvement and Communication. We’ll keep you all apprised as we make our way through this work.
-It was stated that OADS presented its strategic plan a while back, with short- and long-term goals. It was asked how that is progressing.
Betsy: The reform groups we just mentioned are part of that overall reform work. Those short- and long-term goals were rolled into our reform work at the suggestion of stakeholder groups, including the Coalition. We’ve improved some things around quality assurance regarding critical events, etc. There’s a number of different things we’re doing currently. I’m happy at any time to discuss some of that larger-picture reform work; I’m happy to revisit it and provides updates to the group. All of that work will be captured on our website as well.
-It was stated that OADS had been looking at another state’s assessment tool. It was asked if there was an update on that.
Betsy: This is being discussed in the Innovation workgroup. We are striving towards having one lifetime waiver instead of multiple different waivers. However, in order to have one waiver you need to have a quality tool to assess what people want and what they need. That’s still something into which we’re looking, to eliminate disparity of services on the various waivers, and be able to have support ebb and flow as needs and wants change throughout the lifespan.
Mary Chris Semrow: I am thinking it would be good to do some work around housing options/ideas as part of the Innovation workgroup. I am starting a list of resources and would love to add to them and add feedback. I’ll put my email in the chat box so people can reach out ([email protected]).
Cullen: Thank you Betsy and Craig for being here and providing a comprehensive update!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: I want to thank everyone for all the input provided last month on transition, it was very helpful. We’re in the process of incorporating some of your ideas into our existing roadmap. We’ll be back to provide a follow-up and gather more feedback as that moves along. Amanda Hodgkins, one of our program coordinators, will be joining this meeting monthly as she will be focusing on that transition work. Also, if people have feedback or questions for other areas within OCFS we’re happy to take that back. I wanted to say that due to the pandemic we’re seeing a lot of children with various diagnoses waiting in the emergency department (ED). Our team is involved with those people, trying to find resources, so their waits in the ED aren’t long, but unfortunately our capacity is low as is the staffing in the ED. We won’t stop working on this, but I wanted to let you know. There’s a lot of strategy work underway at OCFS. We’re trying as best we can to improve our service system.
Cullen: Thank you Teresa and Amanda for being here and continuing to provide updates on transition as that work evolves and progresses.
SMACT (Southern Maine Advisory Council on Transition)
Nancy Peavy: SMACT resumed its meetings in October and have had great participation through Zoom. We are working on getting the blog and Facebook page switched over to my name so I can have information available online. Last Friday, Heather Shields an OT/PT gave a presentation on determining when young people are ready and capable for driving. If you want to be on the email list feel free to email me ([email protected]). The December Meeting is on 12/4 and will feature a presentation from Voc Rehab, including a partnership between Voc Rehab and York county.
Disability Rights Maine (DRM) Update:
Staci Converse: We’re having a webinar tomorrow on the HCBS Settings Rule, being put on by DRM and SUFU (Speaking Up For Us) (click here for more information). We wrapped up all of our voting trainings, which occupied a lot of our time. A lot of our advocacy has been around COVID, having hard conversations about what these restrictions mean for individuals and how to make them as individualized as possible.
State Legislature Update:
Cullen: Now that the election results are in, we know that both chambers of Maine’s Legislature will remain under democratic control. Additionally, it remains highly unlikely there will be a Special Session. It remains up to the Governor to call the Legislature back, which she is very unlikely to do.
Laura Cordes – MACSP (Maine Association for Community Service Providers): The 130th Legislature starts next month (the first Wednesday of December). There were a lot of bills left on the table at the end of the last session that this group was following, the bills to eliminate the waitlists and the bill to increase the DSP rates among them. Though there may not be cuts for this fiscal year, the Legislature has a huge budget hole to fill over the next couple of years. Additional stimulus funding from the federal government for states may help offset those costs. I don’t know what bills Committee chairs will entertain with fiscal notes due to the anticipated major budget shortfall. So, we will have to be vigilant and organized to stave off cuts to services and supports. Since the election, the caucuses have been meeting to select their new leaders. The Senate Democratic Caucus met and voted to keep its leadership, as did the House Republican Caucus. The Senate Republican Caucus is looking to elect a new leader; and the House Democratic Caucus will be meeting to select a new Speaker. We should know all of the Legislative leadership by the end of the week.
Cullen: About a third of the Legislature has turned over due to term limits, so we have a lot of education to provide to Legislators about the needs of people with ID/DD in Maine. Between now and when the Legislature convenes is an ideal time to reach out to your representatives to provide them a clear understanding of what happens in your world as they set their priorities under tight fiscal restraints.
Kim Humphrey – Community Connect: We’re working on uploading the contact information for the new Legislators, but feel free to keep checking the website for updated information for the Postcard Project.
Cullen: We know the ID/DD world well; however, newly elected Legislators do not and likely don’t understand all of the dynamics. Don’t hesitate to reach out and share what’s going on in your world so they can have a good understanding as they make decisions in the Legislature which will affect the people about whom we care.
Federal & Housing Updates:
Cullen: As everyone is well aware, we’ve had an election, so there will be changes due to that. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing stability. On 9/30 Congress passed and the President signed a short-term, stop-gap Continuing Resolution, funding agencies at FY 20 levels 12/11, averting a government shutdown. Congress has yet to come to consensus on another stimulus package, with both the House and Senate having their own versions. Some Congressional leaders have signaled wanting to pass a stimulus bill in the lame duck session, before the inauguration. Without congressional action many programs/benefits included in previous stimulus bills would expire. A new version of the House HEROES Act was released on 9/28. The new package scales back the House-passed Heroes bill from $3.4 trillion to $2.2 trillion but does so in sound ways. The new package contains the same core elements, which together form a strong response to the crisis: food, housing, and income assistance to tens of millions of struggling households, including improvements in jobless benefits; state and local fiscal relief; and a strong public health response. However, this bill was not considered by the Senate. On the federal budget, the House passed a package of six spending bills, including T-HUD, for FY 21. This bill would provide a significant increase in funding for housing programs that serve low-income people and communities, and the bill includes two amendments which would block implementation of harmful HUD proposals. However, the Senate has not addressed a T-HUD bill for FY 21. It remains to be seen whether Congress will pass FY 21 funding bills as part of an omnibus bill, or another continuing resolution (CR) in order to keep the government, open beyond 12/11 when the current CR expires. During a lame duck session, we may see the can kicked down the road until after the inauguration, but we have to wait and see.
-It was asked if the various Portland referendums which passed, such as rent control, would be advantageous.
Cullen: Many people believe these referendums, such as the rent control referendum, may add additional red tape. There are concerns about unintended consequences for all of the referendum questions that passed in Portland.
Other Business:
David Cowing: We went through a process with our son switching him from WellCare to another plan that met his needs better. My wife and I started out with a great deal of confusion about why we would need additional coverage in addition to the coverage our son receives through Medicaid. Frederick Murphy, State & Federal Health Adviser with Market Place Insurance Agency, LLC., was very helpful to us. He has agreed to present to the Coalition in January, providing an overview of Medicaid, Medicare, Medicare Advantage Plans (such as WellCare Maine), including the differences between the various insurance options.
The next meeting will be on Monday, December 14, 2020, 12-2pm, via Zoom.
Featured Speaker: Erin Salvo, Associate Director, Adult Protective Services, DHHS-OADS.
Topic: Guardianship and reporting requirements that began in September 2019.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
(Click here for a link to a recording of this meeting. Passcode: K5C5*+MZ)
Cullen Ryan introduced himself and welcomed the group. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted.
Featured Speaker: Jennifer Putnam, Executive Director, Waban. waban.org Topic: Remote Monitoring – An innovative way to provide services.
Cullen: Today we have Jennifer Putnam, Executive Director, and Brenda Smith, Adult Case Management Supervisor & Director of Special Projects, providing a presentation on a new remote monitoring program at Waban which offers an innovative way to provide services. Thank you for being here, Jennifer and Brenda!
Jennifer Putnam: As Cullen said, Brenda Smith, is here with me today as well; she’s the Director of Special Projects at Waban. We’re going to talk about our new remote monitoring system. This was Neal’s (the previous Waban Executive Director), brainchild and he spent many years developing the ideas and the parameters around what we wanted to see with a remote monitoring system. About 10 years ago with the beginning of smart homes, it became very clear technology could be used to support people with disabilities to provide more independence, and that it could also be more cost effective. All of the off-the-shelf systems seemed to be for people who already could support themselves fairly well independently and wouldn’t work for people with disabilities and people living in group homes. It took a long time to develop this in a way that would work well for people with ID/DD. With increasing pressure on state budgets etc., there is always the threat of services being cut. Remote monitoring is a way in which services can still be provided well, by someone who knows the individual well, while maintaining the continuum of care in a fiscally responsible way. A few years ago, we began working with a startup tech company and combined efforts. We wanted to ensure that the software we chose would fit individuals’ needs. In year one, we estimate we’ll serve 10 individuals, reducing staffing by 5.25 FTEs (Full Time Employees), and save an estimated $96,000 that year. In year two, we estimate 21 additional members being served, for a total of 31 members, and reduce staffing by a total of 15 FTEs. With the situation as it is now with the staffing crisis this cannot come soon enough. I want to show a short video which demonstrates remote monitoring in use. (Click here for the video.)
Jennifer: Brenda will walk us through our presentation to show you what we’re doing in Maine right now. This has been in effect for about two months, but it’s going very well thus far.
Brenda Smith: This is a new initiative for Waban. We’ve been working on it for about two years, with one of those years being the development phase where we were finally able to identify a platform, we thought could work for us. We’re calling this program TechWorks For Independence.
Begin Presentation (Click here for the presentation)
Brenda: Basically, we’re providing support with a decreased reliance on in-person staff. It’s increasing opportunities for independence and skill-building, while keeping a safety net for folks. We primarily use tablets, video cameras with sensors, and call buttons. The service is allowed under the PCP (Person Centered Planning) process. For folks with Section 21 and 29 remote monitoring is allowed under assistive technology (AT). We launched in September, starting with three individuals, folks living in Waban-supported apartments. We thought we’d start small, and those folks had resting overnight staff, so we thought it was a good place to start. We’re in the process of adding three more individuals. We’ve had a lot of great feedback. We have partnered with a remote monitoring service, which allows our staff to utilize the software from the TechWorks remote monitoring station, keeping that local knowledge and expertise which is so important. We have active, passive reactive, and intermittent monitoring. Active monitoring happens in real time with live support. Passive reactive monitoring is watching to see if there’s an event – this is mostly what we’re doing. This would be if something is triggered – an open front door, a smoke alarm, a bed alarm etc. Those events would trigger an alert and the staff person can call the individual instantaneously through the tablet. Intermittent monitoring is designed for scheduled check-ins, such as medication reminders, reminding people of appointments, etc. Right now, we’re working with Waban members, and this phase doesn’t include taking on new members outside of the agency, but that is something we’re going to expand to do – starting in York and Cumberland Counties. If you would like to get on a waitlist for this you can feel free to contact me ([email protected]).
We’re responsible for setting up the equipment in the individual’s home, the type and placement of which is determined by the PCP process and the assistive technology (AT) assessment based on the person’s desires and needs. Then, we do the monitoring, provide the software and hardware, some of which is paid for through the AT assessment and authorization process with the waivers. We have redundancies built in such as generators, battery back-ups, plans in place for Wi-Fi failures, etc. We also have admin features such as tracking, running reports, billing, and so on. As far as the person’s home, the software company supplies a base unit that goes into the person’s home, then the cameras and sensors needed are installed per the individual’s specific needs and desires. We have the ability to do two-way communication as well. Then we do the installation of the equipment in the person’s home and provide the training on how to use it. This remote monitoring allows the ability to retain our caregivers to provide supports in the community.
Discussion:
Jennifer: We’re open to any questions people have about the service. I think we’re the first organization in Maine doing this the way we are.
-It was asked what the protocol is for the passive reactive stage, and how available someone is when this happens.
Brenda: We have backup staff available located in another home in the evening, and that person can respond within ten minutes. It doesn’t mean that everyone would be providing the backup in that particular way. There’s room for flexibility for how backup plans are developed.
Jennifer: This is part of the assessment and is individualized. There’s also the backup to the backup plan, including software and people redundancies. We have the person doing the remote monitoring, their supervisor, and an on-call person.
-It was stated that they make devices for emergency calls such as buttons, etc. It was asked if that is available.
Brenda: Yes, that ability is there, and we have someone who uses a call button. It’s very individualized, based on medical history and the individual’s wants, needs, and desires.
-It was asked how they identify individuals interested in this type of support and how they get their informed consent.
Brenda: We started by talking to members in Waban apartments and their guardians. Then if they were interested, we moved it to the team planning process, involving the individual’s case manager because it all needs to be added into the PCP. Then that needs to be approved by the member and the guardian. They are part of the assessment process as well, so at any point they can make changes, decide they don’t want to do it, etc.
Jennifer: As a real-life example, we have a member who was worried about the cameras and people watching her and not understanding who would be doing that and how. We were able to take her and show her the remote monitoring center, to see what the direct support professional (DSP) was seeing which was very reassuring.
-There was a question regarding the data collected, how it will be used/analyzed, and to whom it will be made available.
Brenda: Right now, the majority of the data is what kind of alerts are being used, how it’s working, the response, etc. Tracking events during the night, the same way we have to for any waiver service. We’re starting out very small and as we grow, we’ll be digging deeper into that.
Jennifer: A lot of the data we’re collecting now is pulled into the system to optimize that individual person’s care and the way we’re handling any given situation. We’re in the pilot period. We’re looking at these different data points and trying to bring them together for a coherent offering of this service. On the back end there’s a lot of effort going into where everything is placed, what happens for that individual when something happens in the home etc. It takes time to learn people’s habits, what you need to be concerned about, what isn’t concerning, and so on. That’s where we are now with data collection, but I think moving forward we’ve done a lot of analysis over time about how this is going to help organizations which are struggling as I speak. There is a shortage of 40 FTEs currently, which is huge and concerning. Any way we are able to relieve some of that pressure is a benefit to not only the folks we’re serving this way, but also to other folks who cannot be provided care in this way but need that full-time in-person care.
-It was stated that we deal with such a broad spectrum of the human condition. It was asked if they have a broad profile identifying an ideal candidate for this type of service.
Jennifer: We did develop that. Generally speaking, we started with folks who did not require a lot of support and care during an overnight, so we could run multiple tests of the system while DSPs were still in the home, having both in-person and remote monitoring going simultaneously. The next step is to shift into some of that daytime provision of service.
Craig Patterson – OADS: We struggle with in-home staff being up to date on the PCP and being able to respond efficiently and effectively. What steps are being taken to ensure people doing the remote monitoring know that individuals’ need and thus able to respond well?
Jennifer: The DSPs we have monitoring arguably know the person’s PCP better than intermittent in-home care support person would. When you’re talking about the long-term and expanding this to more people, we have a lot of policies in place to ensure the DSP and the person on-shift knows the individual’s PCP. There are also electronic triggers as well – if it’s not in someone’s plans to pay attention if a front door opens then the remote monitoring wouldn’t step in, but if it’s a red flag it would. There are a lot of safeguards built in.
Craig: The more staff you have doing monitoring, the more they have to know individual plans.
Brenda: Triggers and events are also built into the platform. We don’t want to be in people’s business if it’s not needed. If there are concerning events or something that needs to be addressed, a note would be made to discuss this to see if it needs to be added as a trigger.
-It was asked if someone is struggling with using the system if there’s in-person training in the home.
Brenda: Yes, absolutely. We do provide training, and we’re working on increasing that now. Everyone in the home receives support around the training.
-A self-advocate stated that if she were asked about this, she would decline due to security issues. She stated that technology also has interruptions, can be hacked, and so on. The security issue and confidentiality aspect are concerning. It was stated that the lack of social interaction is concerning as well. Everyone has been practicing social distancing due to the pandemic, but people may easily forget how to have those in-person, social interactions which are key to community inclusion and living fulfilling lives.
Jennifer: So, a no is a no – a no by the individual is a no, a no by the team is a no. Looking at the broader context of safety – we’re not on the internet, we’re about as locked down in terms of technology as you can be. Nothing is foolproof, but just as we have multiple redundancies in place that I mentioned, we also have them for security to ensure as best we can that no one can back-door into the system. There are a lot of good minds working on that all the time and a lot of security in place. I think the service is geared towards someone who wants to make a choice, someone who doesn’t want people in their house. We often take this for granted, time alone in our own homes, and this service allows for that option for people with ID/DD who otherwise would have staff in their homes on a consistent basis. Assuming that everyone want DSPs around all the time just isn’t accurate. This is a good solution for some people, for some it’s not. The point about social interaction is a good one, and part of this is ensuring that the team is planning for social interaction, this service can’t be the only interaction.
-It was stated that we need to find a better phrase than “group home,” as it speaks to institutionalization.
-It was stated that this is telemonitoring not telehealth. It was asked if telehealth could be folded into this as well.
Jennifer: I don’t think they’re mutually exclusive. I could see this coordinating telehealth appointments down the road.
-It was asked if they are concerned that people will not be able to get services if they don’t want remote monitoring.
Jennifer: That’s an interesting question. I think people are already not getting services due to lack of staff. As we move forward with the staffing crisis, which has worsened throughout COVID, and will likely only get better as we move into winter. I do have concerns that people won’t be able to get services, but I don’t tie that to remote monitoring. In an ideal world if we’re in year two providing this service, we’d have 15 FTEs that could switch over to in-person services. In the world we’re in, those 15 FTEs don’t exist because we’re so short-staffed.
-It was asked if a home is moved to the remote monitoring service, and someone in the home doesn’t need it, if that person would be able to stay in that home.
Jennifer: If we moved an entire home to remote monitoring then everyone in the home would receive it. A motion sensor can’t determine who is triggering it, so it would go off regardless of who sets it off. This would start to play into individual choice when selecting where to live. Is remote monitoring something you desire? If not, then that home might not be ideal.
-A parent stated that appropriate use of 911 is a discussion had frequently with his son. It was stated that there might need to be training about when remote monitoring is the right avenue, and when 911 is the needed intervention. It was also mentioned that providing the emergency dispatch centers with this information would be helpful as well.
Jennifer: All of this is written into the script of the program for the individual. Someone who might not know when to call 911, if that’s the case this is a big part of remote monitoring, to identify that and call 911 for that individual if necessary. Or, for someone who is consistently calling 911 when there isn’t a need to do so, there would be a script in place regarding how to deal with that, of which the DSP would be aware, and those 911 calls would be redirected to the remote monitoring system.
-It was asked what would happen if someone has been assessed for not needing remote monitoring lives in an apartment with it.
Jennifer: If remote monitoring was setup in an individual apartment but the individual didn’t need it, it wouldn’t be used. If it was a Waban-owned apartment, we would likely bring someone into that apartment who needs the service because of the cost to install all of the equipment. That’s just a response off the top of my head.
Cullen: I want to thank you both for the presentation, you’ve given us a lot to think about. This is exciting and innovative. Parents have talked for a long time about increasing independence, and this is a modality that could assist with that. The thoughts expressed about security and confidentiality and group-home terminology are also great additions to the dialogue. It would be great to hear how this is going down the road, and how you pivot as you encounter challenges, which always occurs when you pioneer something. Thank you again!
End Presentation (round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins: Most of our work has been talking about the increase in COVID cases around the state and the impact that is having on members, family members, providers, etc. We went a number of weeks with no outbreaks and now we have three currently occurring. I wanted to mention that we’ve gone back to weekly stakeholder calls; there is a link on our website for more information. However, when we would normally have a call from 3pm-4pm tomorrow, instead we will have Drs. Nirav Shah, Siiri Bennett, Stephen Sears hosting a call just to talk about congregate facility preparedness. It’s mostly geared towards agencies running those facilities, but anyone is welcome to listen (the meeting information was provided in the chat box). More OADS COVID-19 updates and related information can also be found on our website. We also shared updates on our website about the guidance that came out from the CDC, again focused on places where people live that’s more congregate in nature. The guidance that’s caused the most stress and concern is when there are a certain number of new cases, more than 16 per 10,000 people in each county, that county is then considered high. The guidance from the CDC is when counties are designated as high, community support programs in those counties close their programs until that designation changes. I’m happy to share those links to those guidance documents (click here the Maine CDC Guidance for Community Engagement of Congregate Settings, and click here for the FAQs regarding testing, visitation, and other community engagement activities in assisted housing settings). We are continuing to get questions around all of this and we’re updating our FAQs and other guidance documents pertaining to when a county moves to the high level of cases classification. Currently, Franklin, Washington, Waldo, Knox, and Somerset are considered high due to their numbers of new cases. As many know, we put forward an Appendix K Waiver to assist during the pandemic. At this point, the K Waiver will officially end on 2/28/2021. We’re hearing from CMS there will likely be opportunities to extend that depending on what’s happening, which we would like to be able to if we’re allowed. More to follow on that. I’m happy to say that there are many people on this call in our two workgroups that have started – Community and Innovations. The notes and the work we’re doing in those workgroups will be posted to the website once it’s available.
Craig: We have two addition workgroups, which will start in late January 2021: Quality Assurance/Quality Improvement and Communication. We’ll keep you all apprised as we make our way through this work.
-It was stated that OADS presented its strategic plan a while back, with short- and long-term goals. It was asked how that is progressing.
Betsy: The reform groups we just mentioned are part of that overall reform work. Those short- and long-term goals were rolled into our reform work at the suggestion of stakeholder groups, including the Coalition. We’ve improved some things around quality assurance regarding critical events, etc. There’s a number of different things we’re doing currently. I’m happy at any time to discuss some of that larger-picture reform work; I’m happy to revisit it and provides updates to the group. All of that work will be captured on our website as well.
-It was stated that OADS had been looking at another state’s assessment tool. It was asked if there was an update on that.
Betsy: This is being discussed in the Innovation workgroup. We are striving towards having one lifetime waiver instead of multiple different waivers. However, in order to have one waiver you need to have a quality tool to assess what people want and what they need. That’s still something into which we’re looking, to eliminate disparity of services on the various waivers, and be able to have support ebb and flow as needs and wants change throughout the lifespan.
Mary Chris Semrow: I am thinking it would be good to do some work around housing options/ideas as part of the Innovation workgroup. I am starting a list of resources and would love to add to them and add feedback. I’ll put my email in the chat box so people can reach out ([email protected]).
Cullen: Thank you Betsy and Craig for being here and providing a comprehensive update!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows: I want to thank everyone for all the input provided last month on transition, it was very helpful. We’re in the process of incorporating some of your ideas into our existing roadmap. We’ll be back to provide a follow-up and gather more feedback as that moves along. Amanda Hodgkins, one of our program coordinators, will be joining this meeting monthly as she will be focusing on that transition work. Also, if people have feedback or questions for other areas within OCFS we’re happy to take that back. I wanted to say that due to the pandemic we’re seeing a lot of children with various diagnoses waiting in the emergency department (ED). Our team is involved with those people, trying to find resources, so their waits in the ED aren’t long, but unfortunately our capacity is low as is the staffing in the ED. We won’t stop working on this, but I wanted to let you know. There’s a lot of strategy work underway at OCFS. We’re trying as best we can to improve our service system.
Cullen: Thank you Teresa and Amanda for being here and continuing to provide updates on transition as that work evolves and progresses.
SMACT (Southern Maine Advisory Council on Transition)
Nancy Peavy: SMACT resumed its meetings in October and have had great participation through Zoom. We are working on getting the blog and Facebook page switched over to my name so I can have information available online. Last Friday, Heather Shields an OT/PT gave a presentation on determining when young people are ready and capable for driving. If you want to be on the email list feel free to email me ([email protected]). The December Meeting is on 12/4 and will feature a presentation from Voc Rehab, including a partnership between Voc Rehab and York county.
Disability Rights Maine (DRM) Update:
Staci Converse: We’re having a webinar tomorrow on the HCBS Settings Rule, being put on by DRM and SUFU (Speaking Up For Us) (click here for more information). We wrapped up all of our voting trainings, which occupied a lot of our time. A lot of our advocacy has been around COVID, having hard conversations about what these restrictions mean for individuals and how to make them as individualized as possible.
State Legislature Update:
Cullen: Now that the election results are in, we know that both chambers of Maine’s Legislature will remain under democratic control. Additionally, it remains highly unlikely there will be a Special Session. It remains up to the Governor to call the Legislature back, which she is very unlikely to do.
Laura Cordes – MACSP (Maine Association for Community Service Providers): The 130th Legislature starts next month (the first Wednesday of December). There were a lot of bills left on the table at the end of the last session that this group was following, the bills to eliminate the waitlists and the bill to increase the DSP rates among them. Though there may not be cuts for this fiscal year, the Legislature has a huge budget hole to fill over the next couple of years. Additional stimulus funding from the federal government for states may help offset those costs. I don’t know what bills Committee chairs will entertain with fiscal notes due to the anticipated major budget shortfall. So, we will have to be vigilant and organized to stave off cuts to services and supports. Since the election, the caucuses have been meeting to select their new leaders. The Senate Democratic Caucus met and voted to keep its leadership, as did the House Republican Caucus. The Senate Republican Caucus is looking to elect a new leader; and the House Democratic Caucus will be meeting to select a new Speaker. We should know all of the Legislative leadership by the end of the week.
Cullen: About a third of the Legislature has turned over due to term limits, so we have a lot of education to provide to Legislators about the needs of people with ID/DD in Maine. Between now and when the Legislature convenes is an ideal time to reach out to your representatives to provide them a clear understanding of what happens in your world as they set their priorities under tight fiscal restraints.
Kim Humphrey – Community Connect: We’re working on uploading the contact information for the new Legislators, but feel free to keep checking the website for updated information for the Postcard Project.
Cullen: We know the ID/DD world well; however, newly elected Legislators do not and likely don’t understand all of the dynamics. Don’t hesitate to reach out and share what’s going on in your world so they can have a good understanding as they make decisions in the Legislature which will affect the people about whom we care.
Federal & Housing Updates:
Cullen: As everyone is well aware, we’ve had an election, so there will be changes due to that. Housing continues to be a major issue, especially as many front-line workers making low wages could be facing major housing stability. On 9/30 Congress passed and the President signed a short-term, stop-gap Continuing Resolution, funding agencies at FY 20 levels 12/11, averting a government shutdown. Congress has yet to come to consensus on another stimulus package, with both the House and Senate having their own versions. Some Congressional leaders have signaled wanting to pass a stimulus bill in the lame duck session, before the inauguration. Without congressional action many programs/benefits included in previous stimulus bills would expire. A new version of the House HEROES Act was released on 9/28. The new package scales back the House-passed Heroes bill from $3.4 trillion to $2.2 trillion but does so in sound ways. The new package contains the same core elements, which together form a strong response to the crisis: food, housing, and income assistance to tens of millions of struggling households, including improvements in jobless benefits; state and local fiscal relief; and a strong public health response. However, this bill was not considered by the Senate. On the federal budget, the House passed a package of six spending bills, including T-HUD, for FY 21. This bill would provide a significant increase in funding for housing programs that serve low-income people and communities, and the bill includes two amendments which would block implementation of harmful HUD proposals. However, the Senate has not addressed a T-HUD bill for FY 21. It remains to be seen whether Congress will pass FY 21 funding bills as part of an omnibus bill, or another continuing resolution (CR) in order to keep the government, open beyond 12/11 when the current CR expires. During a lame duck session, we may see the can kicked down the road until after the inauguration, but we have to wait and see.
-It was asked if the various Portland referendums which passed, such as rent control, would be advantageous.
Cullen: Many people believe these referendums, such as the rent control referendum, may add additional red tape. There are concerns about unintended consequences for all of the referendum questions that passed in Portland.
Other Business:
David Cowing: We went through a process with our son switching him from WellCare to another plan that met his needs better. My wife and I started out with a great deal of confusion about why we would need additional coverage in addition to the coverage our son receives through Medicaid. Frederick Murphy, State & Federal Health Adviser with Market Place Insurance Agency, LLC., was very helpful to us. He has agreed to present to the Coalition in January, providing an overview of Medicaid, Medicare, Medicare Advantage Plans (such as WellCare Maine), including the differences between the various insurance options.
The next meeting will be on Monday, December 14, 2020, 12-2pm, via Zoom.
Featured Speaker: Erin Salvo, Associate Director, Adult Protective Services, DHHS-OADS.
Topic: Guardianship and reporting requirements that began in September 2019.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].