June 10, 2019
Minutes
Minutes
Present: Lydia Dawson, Mark Kemmerle, Kim Humphrey, Julie Brennan, David Cowing, Betsy Mahoney, Erin Salvo, Paul Saucier, Staci Converse, Foxfire Buck, John Regan, Erin Rowan, Jamie Whitehouse, Doug Malcolm, Jenn Brooking, Jessica Crouse, Alexandria Twombly, Tammy Pike, Luc Nya, Cullen Ryan, and Vickey Rand. Via Zoom – (Brunswick): Teague Morris, Ray Nagel, Colleen Gilliam, and Alli Vercoe. (Auburn): Ann Bentley and Darla Chafin. (Winthrop): Cathy Dionne. (Sanford): Brenda Smith. (Orono): Alan Kurtz, Bonnie Robinson, Maria Cameron, and Janet Hamel. (Bangor): Andrew Cassidy and two other attendees. Misc. sites: Victoria Copp, and Helen Hemminger.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Featured Speaker: Erin Salvo, Associate Director, Adult Protective Services (APS), DHHS-Office of Aging and Disability Services (OADS). www.maine.gov/dhhs/oads/aps-guardianship Topic: APS Update and related discussion.
Cullen: Last month we had Paul Saucier and Derek Fales provide an update on what’s going on at OADS, and during that conversation it was suggested that we have Erin Salvo present on APS. I want to thank Erin for being here today; welcome!
Erin Salvo: As Cullen said, my name is Erin Salvo and I’m the Associate Director of Adult Protective Services (APS), DHHS-Office of Aging and Disability Services (OADS). I’m sure you’re all familiar with APS, but I wanted to give you some background information, provide some data I have available, and answer any questions you might have.
Begin presentation (Click here to view the Presentation)
Erin: We have about ninety (90) APS staff, seventy-seven (77) of whom are case workers, seven (7) are intake workers, and the remainder are investigators. Regarding some of the definitions we use, incapacitated means someone who is unable to receive and process information to make and communicate decisions. The main differences between incapacitated and dependent is if someone is dependent but not incapacitated they can tell us that they do not want APS involved in their life, at which point we would walk away. We can always keep that door open slightly, leaving our card, leaving resources, and asking them to call back if they change their mind – and, that does happen. Abuse, neglect, and exploitation can be acts and/or omissions, for instance if someone requires assistance bathing and is not receiving the assistance they need to do so that would be by omission. Abuse covers physical, sexual, and emotional abuse. We do investigate situations of self-neglect as well. We encourage people to use the central intake number (1-800-624-8404), where you can leave a phone number if more information is needed. The intake number is available 24/7 – APS employees answer during business hours, and after hours OCFS Adult and Children Emergency Services takes over. If there aren’t enough intake workers to answer the phone, they’re listening to voicemails and getting back to people as quickly as they can. We’re working with the National Council on Crime and Delinquency to institute a structure of decision-making for our intake process, to hopefully help standardize intakes and what qualifies as a priority case, which requires a response within 24 hours, and a non-priority case, which requires a response within five days. This is in the testing phase now, with the goal of implementation by January 2020, coinciding with the release of Evergreen. If a case isn’t closed, it’s assigned to a case worker. The primary goal is to determine if the allegations are true, but more importantly that the client is safe, has the services they need, and if the allegations are true that there’s a plan to ensure once APS steps back the issue won’t reoccur. For reports that are criminal in nature, we contact law enforcement right away and follow their lead. Any case that makes its way to a district office is also forwarded to the District Attorneys’ offices. We treat reporter information as confidential; there are very few instances when we have to disclose who reported a case, generally only when a court orders us to turn over that information. This is to ensure that people aren’t anxious about reporting.
There is a substantiation process for Developmental Services within the APS Rule; there is a section within the rule that relates to APS and its ability to maintain a registry for people who are perpetrators, within the database that service providers are required to check during their hiring processes. We’re working with the Division of Licensing and Certification to include APS as part of the licensing background check. We’re a few months out from having there be one fewer check in the process. If we learn of a case where a potential perpetrator has access to a client, we are letting the provider know so they can make arrangements to keep them separated throughout the investigation to ensure safety throughout the entire process.
Regarding public guardianship and conservatorships – we’re seeing limited guardianship more frequently, where people can maintain the ability to make certain decisions. There are about 1,300 people under public guardianship/conservatorship, approximately 50% of whom are people who are eligible for Developmental Services. Often times people have questions about specific cases – I’m always happy to look into cases or answer questions; always feel free to call or email me (Erin’s direct line: 207-287-2630, Email: [email protected]).
Discussion:
-A provider stated that in general, the few calls they’ve had to make to APS have gone well. Erin was thanked for being here, as this is very important information. It was stated that when a staff person leaves an agency, doing an exit narrative in the PCP would be advantageous. It was stated that the timing of the investigation can be a barrier.
-It was asked what constitutes self-neglect, for example, if someone choosing to eat ice cream for every meal would constitute self-neglect.
Erin: With developmental services investigations of self-neglect are very uncommon – less than 10%. For someone who has very poor eating habits, it would probably coincide with whether or not the person knows that their actions have consequences – this could line up with a guardianship study. If someone is knowingly making bad decisions, that’s their right.
-It was asked if the email inquiry process will still be available for the APS check when it is included with the licensing background check, as it’s used for the Volunteer Correspondent Program.
Erin: That’s a good question. We had planned on eliminating the email inquiry process, but this is something we can look into. The response time might be a little slower once this is included in the licensing background check.
-It was asked if there is a certain dollar amount threshold used for financial exploitation.
Erin: There is not a threshold for financial exploitation.
-There was a question regarding the OIG report, specifically whether the 95% of cases that weren’t investigated was appropriate.
Erin: One piece around the OIG findings – throughout the entire timeframe for the audit, 8,000 of the 13,000 reports were medication errors, which skews the overall percentage. Since the report, we’ve made a lot of changes, including removing APS reporting from EIS, having it align with what’s in statute, and having mandated reporters call the intake line so that reports come directly to our office.
-It was asked if there has been an increase in their caseloads due to this.
Erin: The current APS caseload is 26 per case worker. We haven’t seen an increase in caseloads, but we have experienced an uptick in reporting overall. Comparing calendar year 2017 with 2018, there was a 20% increase in cases reported. This doesn’t necessarily mean there’s more abuse, neglect, or exploitation occurring, however. We’ve made a huge push for more education in the community, including educating bank tellers on financial exploitation. In general, as we get out there more and explain what we’re here to do, we see more reports happen because people know we’re a resource.
-It was asked how involved APS is with the priority statuses for the Section 21 waitlist, especially since there is language in the priorities pertaining to APS involvement.
Erin: I’m not the best person to ask. Some of the staff in Developmental Services side have access to our information. I could take this question back to get you a better answer. In general, having APS involvement and substantiation can impact priority status. We don’t make recommendations for priority status, we provide the information for which we’ve been asked.
-It was asked what the raw numbers are for calendar years 2017 and 2018.
Erin: I usually have numbers broken out by month, but I can get those for you. In calendar year 2018, there were 8,500 total reports made. In 2018, for clients eligible for Developmental Services there were approximately 800 cases that then were either closed at the supervisor level or investigated; 60% of the cases were assigned to a case worker.
-It was stated that through the old way of reporting in EIS, if a med error was checked and med errors were then sent to APS, case workers’ inboxes must have been filled with a lot of non-reportable events.
Erin: It was a different process. There are different categories that trigger events. Medication errors were something the OIG looked at within the scope of what should have been investigated, but that’s not something that would have made its way to APS.
-It was asked how many of the assigned cases for people eligible for Developmental Services were substantiated.
Erin: About 190 of the assigned were substantiated, so about 40%. That can be a little skewed in our current system, as inability to give informed consent is a category.
-It was asked how many of these were considered Level 1 versus Level 2.
Erin: I can get that information for you.
-It was stated that conflicts of interest arise between the State as the guardian versus what the State as the case manager. It was asked how this is addressed.
Erin: We’re looking into this for resolutions. We’re planning to have many more discussions about this.
-It was asked what the criteria is for the guardianship study.
Erin: Right now, we’re basically trying to mirror what the process looks like in the new probate code. There’s no form that lines up with this, we’re going off of the probate code and it often involves a lot of conversations between the supervisor, case worker, a physician, a psychiatrist, developing desk-level checks for those more discrete things, etc.
-It was stated that providers are trying to figure out what this all means. It was stated that everyone using the same standards would be helpful.
Erin: Yes, and Disability Rights Maine has done great work training our staff on supported decision-making.
-It was asked if the FAST team was expanded for Developmental Services?
Erin: The Financial Abuse Specialist Teams, or FAST team, investigates financial exploitation cases, but other case workers can investigate these as well. They’ve had a little more training on investigating bank records and preparing things, so it can move through the criminal justice system. We’ve expanded the total number of investigation case workers, adding five over the past couple of months. Currently, when a financial exploitation case comes in it goes to the FAST supervisor and the district office supervisor, who decide amongst themselves who will take on the case.
-It was stated that the last few times a provider has called the intake number they have received conflicting information regarding contacting licensing. It was asked if Erin could provide clarification on this.
Erin: That’s very good feedback. If it’s a licensed facility, our staff is making that call to licensing as well. This is a good point of clarification, so they provide the right information to you.
Cullen: Thank you very much for being here Erin, this has been great. It was great to have a question arise in the last meeting and have you be able to attend the very next month and answer that question, along with many more. It’s a pleasure having you here and I hope you feel welcomed to attend any meeting in the future!
End of presentation.
(Round of applause)
Featured Speaker: Doug Malcolm, Founder/Director, Portland Wheelers. www.portlandwheelers.org Topic: An overview of the Portland Wheelers program.
Cullen: I had the pleasure of meeting with Doug Malcolm and some of his colleagues to learn about Portland Wheelers, which appears to be a great vehicle for community inclusion. Thank you for being here, Doug!
Doug Malcolm: Thank you for having me! I’m a registered nurse and the Founder and Director of Portland Wheelers. I’ve collected some photographs of us in action to show you today. My strategic reason for being here is that we’re about to do a major expansion beyond greater Portland. We know we have a good thing going, and we want to get this program up and running in other communities. Our mission is outdoor adaptive biking fun for people with disabilities – people who can’t go for a ride themselves but would like to. We have a simple mission with a powerful effect on folks. Our filter for disability is very broad on purpose.
Begin presentation (Click here to view the Presentation)
Doug: I wanted to start by going over some of the lingo. We use tricycles, or trikes, the people we give rides to are “wheelers,” the volunteers for peddle the trikes are “pilots,” and they ride in “pods” of three, with a safety, someone riding their own bike in front, being the eyes and ears of the whole pod. We serve 20 facilities and are in our fifth season providing rides. Our youngest wheeler is six years old, and our oldest is 108 – she has been with us since we started. Our volunteers range from 27 to 74 years old, the majority of whom are women. We have three trikes and 60 volunteer pilots. Many of our volunteers have no background working with the disability community, they’ve simply seen us out in the community, are inspired, and want to give back. We’ll give about 500 wheelers 1,150 rides this year. Our season runs from mid-May to mid-October, with training occurring in mid-April.
There are many benefits to this – it’s therapeutic. This makes it possible for people living with a disability to get outdoors with the sun on their face and the wind in their hair. They get to connect with the larger community around them, all while smiling, laughing, and having a wonderful time. People with disabilities can feel isolated from the larger community. In turn, isolation can lead to depression, poor appetite, poor sleep patterns, etc. These rides help break down isolation, lift spirits, and improve quality of life. We tried to recreate a study done in Alberta, but we didn’t have a enough of a cohort. Alberta Health Services in Canada documented that therapeutic bike riding dramatically reduced levels of depression. (Click here to view the article.)
Rides naturally encourage connection. Pilots and wheelers talk to one another. Wheelers have conversations amongst themselves in their pods. When we’re out in the community people see us and say “Wow, that’s awesome!”
Wheeler testimonial: “I’m inhaling and inhaling, I don’t want to exhale because I want to bring it all home with me.”
I came to nursing late in life. My first and only nursing job was at New England Rehab hospital in Portland, where I worked for about six years. Nursing was not my best strength. However, while I was there I was entirely sensitized to people with traumatic brain injuries, people who had strokes, etc., and watching the family dynamics and the effect this had on peoples’ lives. So, a long story short, I quit my job and started doing this in the fall of 2014, and in the spring of 2015 we had our first Portland Wheelers season. That first year we served 110 people, and for the first three years we grew by 100%, purposely slowing our growth over the years to follow due to capacity.
Our model is that we go to the locations in order to reach the most people. Initially in 2015, our rides originated from Seaside Rehab on Baxter Boulevard, just across the street from Back Cove Trail. We still partner with Seaside, but now serve more than 20 residential or day-program facilities all around Greater Portland. We also serve those living at home through our Come to Us program. Wheelers meet us at CycleMania or Ocean Gateway on Saturday and Wednesday evenings, and from there we roll along the Eastern Prom Trail. We often have parades of family members with us on their own bikes, or we have a partnership with CycleMania where they can rent bikes for free, and come along with us. It’s very valuable to the family members.
Wheeler testimonial: “Near the end of the ride my pilot said, ‘I’m not ready to go back. Are you?’ I said, ‘No, I’m having a great time.’ So, we kept riding a little longer. It was so much fun. It was great to be out in the open air for a whole hour going something.”
A little bit about the organization – we have a $120,00 budget. We hired someone part-time this year to help us get the tricycles around. We rely heavily on volunteers. We raise money all the normal ways, individual contributions are the biggest, but we also have grants, sponsors, etc. We have program fees we charge the facilities, but the end user never pays anything. We have a fundraiser coming up tomorrow evening at Flatbread, where you can see a trike up close and ask questions. We’re starting a campaign to raise $60,00 for three more trikes, a trailer, and a used truck. We want to start making connections and help ten other communities across the state create similar programs.
The website is the best way to reach out, or you can call 207-232-7740 or email [email protected].
Discussion:
-A parent stated that she bought a kit to convert a kid’s bike into a tricycle for her daughter. The equipment is very bulky, and her daughter can’t go for very long bike rides. It was asked how feasible it might be for Scarborough to put up a shed by the trail, so people could access this in the community.
Doug: It’s been tried in other locations and it doesn’t work because of the liability to the town. But, that doesn’t mean something like that wouldn’t work. We could set up another Come to Us location on the trail, and families could come there.
-A provider stated that his experience with the program has been wonderful. There are so many people interested now that the agency wants to shorten the rides so more people can participate. The number one thing is the interaction between the pilot and the wheeler. It’s been tremendously important and that’s what we’re looking for in terms of community inclusion.
Cullen: Doug, this I great, thank you very much for being here!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Click here for the most recent OADS update (posted on its website on 5/30).
Lydia Dawson -MACSP: I think the biggest update is that there is a Section 29 waitlist now. There is a distinct difference between what the Department has been calling a queue and a waitlist. A queue is formed when there’s funding for the slots but offers can’t be made due to the administrative time it takes for the applications and connecting with providers. Now, they have run out of money, so it is a waitlist. Per the OADS update (linked above) the Section 21 waitlist has 1,580 people on it, and the Section 29 waitlist has 162 people (as of 5/14) and includes anyone who applied since December 2018.
Cullen: This gives us a clear idea and increased transparency around the waitlists, opening the door for discussion.
Lydia: I would like to revisit what happened during the Section 21 lawsuit a few years back, the result from which was clearing the Section 21 Priority 1 and Section 29 waitlists. I’m interested if we meet that standard again and what came out of that settlement.
Cullen: There are certainly people involved with the Coalition who were involved with that who might be able to provide insight.
-There was discussion about applying for adult services prior to graduation, including the pros and cons of doing so.
Cullen: You can apply for Section 21 and Section 29 as soon as you turn 18. However, Special Education goes through the 21st year, during which time Section 28 services can still be provided. Someone can apply for and start receiving Section 29 when they turn 18 and are still in school; however, they would be giving up Section 28, which would affect services in the interim as Section 29 isn’t an exact replacement for Section 28. With the emergence of a Section 29 waitlist, that cliff of no services for people aging out of children’s services may also reemerge.
-It was stated that the transition piece is critical. Families are often very connected with the children’s case manager and hold on to them for as long as possible. It’s helpful to encourage families while they’re still connected to the school to connect to adult case management as this transition tends to be especially challenging.
-A provider stated that it is all too often a rude awakening for families, realizing that their children will likely not receive the same one-on-one services in the adult world that they had been accustomed to in children’s services. Adult services are very different from children’s services. Having school departments visit adult programs is very helpful to help paint an accurate picture. Additionally, qualifying for school-based services and adult services is entirely different. Having families be prepared to know what’s needed to qualify for adult services and arranging this early so it’s on hand when it’s needed, is imperative.
Lydia: There is money in the Governor’s budget for 167 new Section 21 offers. If these offers are made, and the people receiving them were receiving Section 29, it may help address that waitlist. I will be interested to see how this evolves. It will be important to keep an eye on those numbers and see how they fluctuate, possibly seeing any potential correlation between the Section 21 and Section 29 waitlists.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Click here for the most recent OCFS update (posted on its website on 5/23).
-It was asked what the current waitlist is for Section 28. A provider stated that they had heard there were approximately 400 kids waiting for children’s services.
Lydia: This sounds about right and is in line with where it’s been sitting.
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group, which met earlier this morning, is back to fulfilling its original purpose acting as a thinktank for OADS. This group is rejuvenated and is working with OADS, re-examining the Developmental Services Lifelong CoC (DD CoC), with the goal of making it more user-friendly for the Legislature. At the next meeting we’ll be looking at the diagram and trying to make it more linear, to reflect the entire lifespan. It’s been a welcomed change having OADS excited and invested in this group, with Paul Saucier attending regularly. We’re looking to invite Todd Landry, OCFS Director, to speak at the September meeting to start to look at the Blueprint for Effective Transition.
Disability Rights Maine (DRM) Update:
Foxfire Buck: DRM is offering rights trainings every other month for DSPs. We’re continuing to monitor different settings where people receive developmental services. Nell and Margaret are presenting at a national symposium in Washington, D.C. on supported decision-making this week. On the Legislative front, it looks like the probate code will be effective September 1st instead of July 1st.
Cullen: I want to thank the group of people who worked collaboratively to modify the probate code language slightly so that it would be the most beneficial and balance everyone’s needs.
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): The big discussions right now are around budgets. The final package of what will be left after the budget isn’t confirmed, but it looks like around $10 million will be left for everyone to fight over which bills get funded off the Table.
Updates about the bills we’re following – it seems as if the Department of Education (DOE) comes forward every year offering to dissolve Child Development Services (CDS) and move its administration to the public-school units. We saw this proposal last year, and there was one this year as well. This time, DOE came with more preparation with the transition plan for this. The Committee felt like it wasn’t enough of a plan, so they carried the bill over to the next session. Assuming the budget goes through, there is money included to hire an independent consultant to look at CDS and establish a transition plan, if moving it to the public-school units ends up being the recommendation from the Committee.
-It was asked if the mortality review funding is solid.
Lydia: My guess is yes, it’s pretty minimal funding comparatively. The MDSOAB (Maine Developmental Services Oversight and Advisory Board) and the Department reached an agreement for the Mortality Review Panel, agreeing to broaden the scope to include all of the waivers.
-It was asked if the funding for the crisis bill was likely to pass.
Lydia: We negotiated with the Department to see which aspects they were willing to do. They have agreed to establish a dedicated crisis intake line for adults with ID/DD and have hired eight people to staff that line. Funding for this is already in the Governor’s budget. The Department is hiring a third-party consultant to look at and evaluate the crisis system. The Department has also agreed to promulgate regulations around crisis services, which has never been done, and will include an opportunity for public comment.
-It was stated that the public hearing for LD 1486, An Act To Strengthen Supports for Adults with Intellectual Disabilities or Autism in Crisis, propmpted an entire page of questions for the Department.
Lydia: We got a lot of information from the Department through that public hearing, including updates on the people out of state receiving services. The Department also stated that they were unsure why the behavioral add on was dropped, this led to the Department coming back with a presentation, in June I believe, about how they’ll better support people with increased needs, specifically looking at people with behavioral plans.
Federal & Housing Updates:
Cullen: Congress is working on the FY 20 allocations and budget, which begins 10/1/19. If Congress does not lift the Budget Control Act federal spending caps, sequestration would occur, as the previous agreement to lift the caps only included FY 18 and 19. Our Delegation is on board with raising the caps and avoiding sequestration, especially thanks to Senators Collins and King for their steadfast support. Senator Shelby has asked that the Senate hold off on the T-HUD budget until the caps are addressed.
-It was stated that there’s a federal proposal that would make changes to the poverty line, among others.
Cullen: There are two policy proposals on the federal level that pertain to this:
Other Business:
The next meeting will be on July 8, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker: Mark Kemmerle, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: MDSOAB Annual Forum.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Featured Speaker: Erin Salvo, Associate Director, Adult Protective Services (APS), DHHS-Office of Aging and Disability Services (OADS). www.maine.gov/dhhs/oads/aps-guardianship Topic: APS Update and related discussion.
Cullen: Last month we had Paul Saucier and Derek Fales provide an update on what’s going on at OADS, and during that conversation it was suggested that we have Erin Salvo present on APS. I want to thank Erin for being here today; welcome!
Erin Salvo: As Cullen said, my name is Erin Salvo and I’m the Associate Director of Adult Protective Services (APS), DHHS-Office of Aging and Disability Services (OADS). I’m sure you’re all familiar with APS, but I wanted to give you some background information, provide some data I have available, and answer any questions you might have.
Begin presentation (Click here to view the Presentation)
Erin: We have about ninety (90) APS staff, seventy-seven (77) of whom are case workers, seven (7) are intake workers, and the remainder are investigators. Regarding some of the definitions we use, incapacitated means someone who is unable to receive and process information to make and communicate decisions. The main differences between incapacitated and dependent is if someone is dependent but not incapacitated they can tell us that they do not want APS involved in their life, at which point we would walk away. We can always keep that door open slightly, leaving our card, leaving resources, and asking them to call back if they change their mind – and, that does happen. Abuse, neglect, and exploitation can be acts and/or omissions, for instance if someone requires assistance bathing and is not receiving the assistance they need to do so that would be by omission. Abuse covers physical, sexual, and emotional abuse. We do investigate situations of self-neglect as well. We encourage people to use the central intake number (1-800-624-8404), where you can leave a phone number if more information is needed. The intake number is available 24/7 – APS employees answer during business hours, and after hours OCFS Adult and Children Emergency Services takes over. If there aren’t enough intake workers to answer the phone, they’re listening to voicemails and getting back to people as quickly as they can. We’re working with the National Council on Crime and Delinquency to institute a structure of decision-making for our intake process, to hopefully help standardize intakes and what qualifies as a priority case, which requires a response within 24 hours, and a non-priority case, which requires a response within five days. This is in the testing phase now, with the goal of implementation by January 2020, coinciding with the release of Evergreen. If a case isn’t closed, it’s assigned to a case worker. The primary goal is to determine if the allegations are true, but more importantly that the client is safe, has the services they need, and if the allegations are true that there’s a plan to ensure once APS steps back the issue won’t reoccur. For reports that are criminal in nature, we contact law enforcement right away and follow their lead. Any case that makes its way to a district office is also forwarded to the District Attorneys’ offices. We treat reporter information as confidential; there are very few instances when we have to disclose who reported a case, generally only when a court orders us to turn over that information. This is to ensure that people aren’t anxious about reporting.
There is a substantiation process for Developmental Services within the APS Rule; there is a section within the rule that relates to APS and its ability to maintain a registry for people who are perpetrators, within the database that service providers are required to check during their hiring processes. We’re working with the Division of Licensing and Certification to include APS as part of the licensing background check. We’re a few months out from having there be one fewer check in the process. If we learn of a case where a potential perpetrator has access to a client, we are letting the provider know so they can make arrangements to keep them separated throughout the investigation to ensure safety throughout the entire process.
Regarding public guardianship and conservatorships – we’re seeing limited guardianship more frequently, where people can maintain the ability to make certain decisions. There are about 1,300 people under public guardianship/conservatorship, approximately 50% of whom are people who are eligible for Developmental Services. Often times people have questions about specific cases – I’m always happy to look into cases or answer questions; always feel free to call or email me (Erin’s direct line: 207-287-2630, Email: [email protected]).
Discussion:
-A provider stated that in general, the few calls they’ve had to make to APS have gone well. Erin was thanked for being here, as this is very important information. It was stated that when a staff person leaves an agency, doing an exit narrative in the PCP would be advantageous. It was stated that the timing of the investigation can be a barrier.
-It was asked what constitutes self-neglect, for example, if someone choosing to eat ice cream for every meal would constitute self-neglect.
Erin: With developmental services investigations of self-neglect are very uncommon – less than 10%. For someone who has very poor eating habits, it would probably coincide with whether or not the person knows that their actions have consequences – this could line up with a guardianship study. If someone is knowingly making bad decisions, that’s their right.
-It was asked if the email inquiry process will still be available for the APS check when it is included with the licensing background check, as it’s used for the Volunteer Correspondent Program.
Erin: That’s a good question. We had planned on eliminating the email inquiry process, but this is something we can look into. The response time might be a little slower once this is included in the licensing background check.
-It was asked if there is a certain dollar amount threshold used for financial exploitation.
Erin: There is not a threshold for financial exploitation.
-There was a question regarding the OIG report, specifically whether the 95% of cases that weren’t investigated was appropriate.
Erin: One piece around the OIG findings – throughout the entire timeframe for the audit, 8,000 of the 13,000 reports were medication errors, which skews the overall percentage. Since the report, we’ve made a lot of changes, including removing APS reporting from EIS, having it align with what’s in statute, and having mandated reporters call the intake line so that reports come directly to our office.
-It was asked if there has been an increase in their caseloads due to this.
Erin: The current APS caseload is 26 per case worker. We haven’t seen an increase in caseloads, but we have experienced an uptick in reporting overall. Comparing calendar year 2017 with 2018, there was a 20% increase in cases reported. This doesn’t necessarily mean there’s more abuse, neglect, or exploitation occurring, however. We’ve made a huge push for more education in the community, including educating bank tellers on financial exploitation. In general, as we get out there more and explain what we’re here to do, we see more reports happen because people know we’re a resource.
-It was asked how involved APS is with the priority statuses for the Section 21 waitlist, especially since there is language in the priorities pertaining to APS involvement.
Erin: I’m not the best person to ask. Some of the staff in Developmental Services side have access to our information. I could take this question back to get you a better answer. In general, having APS involvement and substantiation can impact priority status. We don’t make recommendations for priority status, we provide the information for which we’ve been asked.
-It was asked what the raw numbers are for calendar years 2017 and 2018.
Erin: I usually have numbers broken out by month, but I can get those for you. In calendar year 2018, there were 8,500 total reports made. In 2018, for clients eligible for Developmental Services there were approximately 800 cases that then were either closed at the supervisor level or investigated; 60% of the cases were assigned to a case worker.
-It was stated that through the old way of reporting in EIS, if a med error was checked and med errors were then sent to APS, case workers’ inboxes must have been filled with a lot of non-reportable events.
Erin: It was a different process. There are different categories that trigger events. Medication errors were something the OIG looked at within the scope of what should have been investigated, but that’s not something that would have made its way to APS.
-It was asked how many of the assigned cases for people eligible for Developmental Services were substantiated.
Erin: About 190 of the assigned were substantiated, so about 40%. That can be a little skewed in our current system, as inability to give informed consent is a category.
-It was asked how many of these were considered Level 1 versus Level 2.
Erin: I can get that information for you.
-It was stated that conflicts of interest arise between the State as the guardian versus what the State as the case manager. It was asked how this is addressed.
Erin: We’re looking into this for resolutions. We’re planning to have many more discussions about this.
-It was asked what the criteria is for the guardianship study.
Erin: Right now, we’re basically trying to mirror what the process looks like in the new probate code. There’s no form that lines up with this, we’re going off of the probate code and it often involves a lot of conversations between the supervisor, case worker, a physician, a psychiatrist, developing desk-level checks for those more discrete things, etc.
-It was stated that providers are trying to figure out what this all means. It was stated that everyone using the same standards would be helpful.
Erin: Yes, and Disability Rights Maine has done great work training our staff on supported decision-making.
-It was asked if the FAST team was expanded for Developmental Services?
Erin: The Financial Abuse Specialist Teams, or FAST team, investigates financial exploitation cases, but other case workers can investigate these as well. They’ve had a little more training on investigating bank records and preparing things, so it can move through the criminal justice system. We’ve expanded the total number of investigation case workers, adding five over the past couple of months. Currently, when a financial exploitation case comes in it goes to the FAST supervisor and the district office supervisor, who decide amongst themselves who will take on the case.
-It was stated that the last few times a provider has called the intake number they have received conflicting information regarding contacting licensing. It was asked if Erin could provide clarification on this.
Erin: That’s very good feedback. If it’s a licensed facility, our staff is making that call to licensing as well. This is a good point of clarification, so they provide the right information to you.
Cullen: Thank you very much for being here Erin, this has been great. It was great to have a question arise in the last meeting and have you be able to attend the very next month and answer that question, along with many more. It’s a pleasure having you here and I hope you feel welcomed to attend any meeting in the future!
End of presentation.
(Round of applause)
Featured Speaker: Doug Malcolm, Founder/Director, Portland Wheelers. www.portlandwheelers.org Topic: An overview of the Portland Wheelers program.
Cullen: I had the pleasure of meeting with Doug Malcolm and some of his colleagues to learn about Portland Wheelers, which appears to be a great vehicle for community inclusion. Thank you for being here, Doug!
Doug Malcolm: Thank you for having me! I’m a registered nurse and the Founder and Director of Portland Wheelers. I’ve collected some photographs of us in action to show you today. My strategic reason for being here is that we’re about to do a major expansion beyond greater Portland. We know we have a good thing going, and we want to get this program up and running in other communities. Our mission is outdoor adaptive biking fun for people with disabilities – people who can’t go for a ride themselves but would like to. We have a simple mission with a powerful effect on folks. Our filter for disability is very broad on purpose.
Begin presentation (Click here to view the Presentation)
Doug: I wanted to start by going over some of the lingo. We use tricycles, or trikes, the people we give rides to are “wheelers,” the volunteers for peddle the trikes are “pilots,” and they ride in “pods” of three, with a safety, someone riding their own bike in front, being the eyes and ears of the whole pod. We serve 20 facilities and are in our fifth season providing rides. Our youngest wheeler is six years old, and our oldest is 108 – she has been with us since we started. Our volunteers range from 27 to 74 years old, the majority of whom are women. We have three trikes and 60 volunteer pilots. Many of our volunteers have no background working with the disability community, they’ve simply seen us out in the community, are inspired, and want to give back. We’ll give about 500 wheelers 1,150 rides this year. Our season runs from mid-May to mid-October, with training occurring in mid-April.
There are many benefits to this – it’s therapeutic. This makes it possible for people living with a disability to get outdoors with the sun on their face and the wind in their hair. They get to connect with the larger community around them, all while smiling, laughing, and having a wonderful time. People with disabilities can feel isolated from the larger community. In turn, isolation can lead to depression, poor appetite, poor sleep patterns, etc. These rides help break down isolation, lift spirits, and improve quality of life. We tried to recreate a study done in Alberta, but we didn’t have a enough of a cohort. Alberta Health Services in Canada documented that therapeutic bike riding dramatically reduced levels of depression. (Click here to view the article.)
Rides naturally encourage connection. Pilots and wheelers talk to one another. Wheelers have conversations amongst themselves in their pods. When we’re out in the community people see us and say “Wow, that’s awesome!”
Wheeler testimonial: “I’m inhaling and inhaling, I don’t want to exhale because I want to bring it all home with me.”
I came to nursing late in life. My first and only nursing job was at New England Rehab hospital in Portland, where I worked for about six years. Nursing was not my best strength. However, while I was there I was entirely sensitized to people with traumatic brain injuries, people who had strokes, etc., and watching the family dynamics and the effect this had on peoples’ lives. So, a long story short, I quit my job and started doing this in the fall of 2014, and in the spring of 2015 we had our first Portland Wheelers season. That first year we served 110 people, and for the first three years we grew by 100%, purposely slowing our growth over the years to follow due to capacity.
Our model is that we go to the locations in order to reach the most people. Initially in 2015, our rides originated from Seaside Rehab on Baxter Boulevard, just across the street from Back Cove Trail. We still partner with Seaside, but now serve more than 20 residential or day-program facilities all around Greater Portland. We also serve those living at home through our Come to Us program. Wheelers meet us at CycleMania or Ocean Gateway on Saturday and Wednesday evenings, and from there we roll along the Eastern Prom Trail. We often have parades of family members with us on their own bikes, or we have a partnership with CycleMania where they can rent bikes for free, and come along with us. It’s very valuable to the family members.
Wheeler testimonial: “Near the end of the ride my pilot said, ‘I’m not ready to go back. Are you?’ I said, ‘No, I’m having a great time.’ So, we kept riding a little longer. It was so much fun. It was great to be out in the open air for a whole hour going something.”
A little bit about the organization – we have a $120,00 budget. We hired someone part-time this year to help us get the tricycles around. We rely heavily on volunteers. We raise money all the normal ways, individual contributions are the biggest, but we also have grants, sponsors, etc. We have program fees we charge the facilities, but the end user never pays anything. We have a fundraiser coming up tomorrow evening at Flatbread, where you can see a trike up close and ask questions. We’re starting a campaign to raise $60,00 for three more trikes, a trailer, and a used truck. We want to start making connections and help ten other communities across the state create similar programs.
The website is the best way to reach out, or you can call 207-232-7740 or email [email protected].
Discussion:
-A parent stated that she bought a kit to convert a kid’s bike into a tricycle for her daughter. The equipment is very bulky, and her daughter can’t go for very long bike rides. It was asked how feasible it might be for Scarborough to put up a shed by the trail, so people could access this in the community.
Doug: It’s been tried in other locations and it doesn’t work because of the liability to the town. But, that doesn’t mean something like that wouldn’t work. We could set up another Come to Us location on the trail, and families could come there.
-A provider stated that his experience with the program has been wonderful. There are so many people interested now that the agency wants to shorten the rides so more people can participate. The number one thing is the interaction between the pilot and the wheeler. It’s been tremendously important and that’s what we’re looking for in terms of community inclusion.
Cullen: Doug, this I great, thank you very much for being here!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Click here for the most recent OADS update (posted on its website on 5/30).
Lydia Dawson -MACSP: I think the biggest update is that there is a Section 29 waitlist now. There is a distinct difference between what the Department has been calling a queue and a waitlist. A queue is formed when there’s funding for the slots but offers can’t be made due to the administrative time it takes for the applications and connecting with providers. Now, they have run out of money, so it is a waitlist. Per the OADS update (linked above) the Section 21 waitlist has 1,580 people on it, and the Section 29 waitlist has 162 people (as of 5/14) and includes anyone who applied since December 2018.
Cullen: This gives us a clear idea and increased transparency around the waitlists, opening the door for discussion.
Lydia: I would like to revisit what happened during the Section 21 lawsuit a few years back, the result from which was clearing the Section 21 Priority 1 and Section 29 waitlists. I’m interested if we meet that standard again and what came out of that settlement.
Cullen: There are certainly people involved with the Coalition who were involved with that who might be able to provide insight.
-There was discussion about applying for adult services prior to graduation, including the pros and cons of doing so.
Cullen: You can apply for Section 21 and Section 29 as soon as you turn 18. However, Special Education goes through the 21st year, during which time Section 28 services can still be provided. Someone can apply for and start receiving Section 29 when they turn 18 and are still in school; however, they would be giving up Section 28, which would affect services in the interim as Section 29 isn’t an exact replacement for Section 28. With the emergence of a Section 29 waitlist, that cliff of no services for people aging out of children’s services may also reemerge.
-It was stated that the transition piece is critical. Families are often very connected with the children’s case manager and hold on to them for as long as possible. It’s helpful to encourage families while they’re still connected to the school to connect to adult case management as this transition tends to be especially challenging.
-A provider stated that it is all too often a rude awakening for families, realizing that their children will likely not receive the same one-on-one services in the adult world that they had been accustomed to in children’s services. Adult services are very different from children’s services. Having school departments visit adult programs is very helpful to help paint an accurate picture. Additionally, qualifying for school-based services and adult services is entirely different. Having families be prepared to know what’s needed to qualify for adult services and arranging this early so it’s on hand when it’s needed, is imperative.
Lydia: There is money in the Governor’s budget for 167 new Section 21 offers. If these offers are made, and the people receiving them were receiving Section 29, it may help address that waitlist. I will be interested to see how this evolves. It will be important to keep an eye on those numbers and see how they fluctuate, possibly seeing any potential correlation between the Section 21 and Section 29 waitlists.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Click here for the most recent OCFS update (posted on its website on 5/23).
-It was asked what the current waitlist is for Section 28. A provider stated that they had heard there were approximately 400 kids waiting for children’s services.
Lydia: This sounds about right and is in line with where it’s been sitting.
Developmental Services Stakeholders Continuum of Care
Cullen: The Developmental Services Stakeholders Continuum of Care group, which met earlier this morning, is back to fulfilling its original purpose acting as a thinktank for OADS. This group is rejuvenated and is working with OADS, re-examining the Developmental Services Lifelong CoC (DD CoC), with the goal of making it more user-friendly for the Legislature. At the next meeting we’ll be looking at the diagram and trying to make it more linear, to reflect the entire lifespan. It’s been a welcomed change having OADS excited and invested in this group, with Paul Saucier attending regularly. We’re looking to invite Todd Landry, OCFS Director, to speak at the September meeting to start to look at the Blueprint for Effective Transition.
Disability Rights Maine (DRM) Update:
Foxfire Buck: DRM is offering rights trainings every other month for DSPs. We’re continuing to monitor different settings where people receive developmental services. Nell and Margaret are presenting at a national symposium in Washington, D.C. on supported decision-making this week. On the Legislative front, it looks like the probate code will be effective September 1st instead of July 1st.
Cullen: I want to thank the group of people who worked collaboratively to modify the probate code language slightly so that it would be the most beneficial and balance everyone’s needs.
State Legislature Update:
Lydia Dawson – MACSP (Maine Association for Community Service Providers): The big discussions right now are around budgets. The final package of what will be left after the budget isn’t confirmed, but it looks like around $10 million will be left for everyone to fight over which bills get funded off the Table.
Updates about the bills we’re following – it seems as if the Department of Education (DOE) comes forward every year offering to dissolve Child Development Services (CDS) and move its administration to the public-school units. We saw this proposal last year, and there was one this year as well. This time, DOE came with more preparation with the transition plan for this. The Committee felt like it wasn’t enough of a plan, so they carried the bill over to the next session. Assuming the budget goes through, there is money included to hire an independent consultant to look at CDS and establish a transition plan, if moving it to the public-school units ends up being the recommendation from the Committee.
-It was asked if the mortality review funding is solid.
Lydia: My guess is yes, it’s pretty minimal funding comparatively. The MDSOAB (Maine Developmental Services Oversight and Advisory Board) and the Department reached an agreement for the Mortality Review Panel, agreeing to broaden the scope to include all of the waivers.
-It was asked if the funding for the crisis bill was likely to pass.
Lydia: We negotiated with the Department to see which aspects they were willing to do. They have agreed to establish a dedicated crisis intake line for adults with ID/DD and have hired eight people to staff that line. Funding for this is already in the Governor’s budget. The Department is hiring a third-party consultant to look at and evaluate the crisis system. The Department has also agreed to promulgate regulations around crisis services, which has never been done, and will include an opportunity for public comment.
-It was stated that the public hearing for LD 1486, An Act To Strengthen Supports for Adults with Intellectual Disabilities or Autism in Crisis, propmpted an entire page of questions for the Department.
Lydia: We got a lot of information from the Department through that public hearing, including updates on the people out of state receiving services. The Department also stated that they were unsure why the behavioral add on was dropped, this led to the Department coming back with a presentation, in June I believe, about how they’ll better support people with increased needs, specifically looking at people with behavioral plans.
Federal & Housing Updates:
Cullen: Congress is working on the FY 20 allocations and budget, which begins 10/1/19. If Congress does not lift the Budget Control Act federal spending caps, sequestration would occur, as the previous agreement to lift the caps only included FY 18 and 19. Our Delegation is on board with raising the caps and avoiding sequestration, especially thanks to Senators Collins and King for their steadfast support. Senator Shelby has asked that the Senate hold off on the T-HUD budget until the caps are addressed.
-It was stated that there’s a federal proposal that would make changes to the poverty line, among others.
Cullen: There are two policy proposals on the federal level that pertain to this:
- President Trump’s Poverty Policy Proposal: The Trump Administration has proposed using a lower measure of inflation when adjusting the poverty line each year. If the poverty line is altered in this manner, fewer individuals and families will qualify over time for various forms of assistance.
- HUD Proposed Rule amending implementing of section 214 of the Housing and Community Development Act of 1980, as amended (Section 214): The proposed rule would bar U.S. citizens and eligible immigrants from receiving federal housing assistance if they share a home with an immigrant family member who’s ineligible due their immigration status.
Other Business:
- The Independence Association remote site in Brunswick is not available in July, as they are moving offices.
The next meeting will be on July 8, 2019, 12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland.
Featured Speaker: Mark Kemmerle, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). Topic: MDSOAB Annual Forum.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].