July 9, 2018
Present: Ed & Suellen Doggett, Mary Chris Semrow, David Cowing, Mark Kemmerle, Nell Brimmer, Annmarie Mayberry, Rebecca Schroeder, Scott Miller, Bryan Gordon, Betsy Mahoney, Cullen Ryan, and Vickey Rand. Via Zoom – (Auburn): Ann Bentley. (Sanford): Brenda Smith. (Brunswick): Ray Nagel and Colleen Gilliam. (Farmington): Darryl Wood, Joyce Daggett, and Kristin McPherson. (Waterville): Pam Cairnie. Misc. sites: Lori Brann, Kathy Adams, Barbie-Jo Lord.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Featured Speaker: Mark Kemmerle, Executive Director, Maine Developmental Services Oversight and Advisory Board (MDSOAB). mainedsoab.org Topic: Part two of the MDSOAB Annual Public Forum
Cullen: Each year the MDSOAB holds community forums across the state to pull people familiar with and/or receiving services together to provide input on how services could be improved, point out issues, and provide general feedback. Last month’s meeting featured Mark Kemmerle, Executive Director of the MDSOAB, presenting part one of the MDSOAB Annual Public Forum. However, due to time constraints and robust discussion, not all of the topics were covered; Mark graciously agreed to return today to continue the discussion. I want to welcome you back, Mark, and thank you for this second forum to ensure this group provides feedback on as many areas as possible. As a reminder, this forum is designed to solicit your feedback about how the system of care is working. Input gathered here will inform its annual report. We want to ensure that you all have Mark’s contact information (firstname.lastname@example.org) so that you can continue to provide feedback, even after the meeting.
Mark Kemmerle: I’m still in the process of writing our annual report, which I hope to complete this month. I’ve been using the information from last month’s discussion for the OAB annual report, from which recommendations for the Department will be made.
Begin OAB Forum:
Mark went through the topics individually with the group. The group provided feedback and had thorough discussions for each area of interest covered. The discussion for each topic covered is listed below.
Topics for discussion (-followed by comments from attendees. Italicized sections represent feedback/discussion from the group. Sections in blue are from Part One of the forum, held at the 6/11 Coalition meeting, and are included so that all feedback gathered at the forums is available in one place.):
1. Crisis Services: - The system is slow to identify a crisis. Parents don’t have enough education/training regarding how to identify a crisis. Crises can happen incrementally. It’s hard for parents to know when their child, or their family, is in crisis because they’re so accustomed to dealing with the behaviors, attempting to deescalate, and comparing the current situation to previous ones where they have been able to prevail, and in comparison, the current situation doesn’t seem so bad. In-home support providers can be such great cheerleaders, that it can make it even more difficult to known you’re in crisis. A parent stated, from experience, that an out-of-state bed can look very appealing, and can better address a child’s needs, when compared to the insufficient crisis services in-state. It’s very difficult to determine the true number of crisis beds, let alone how many are actually available. The Consent Decree included 24 crisis beds, 12 of which were provided by the Department, and 12 of which were provided by independent providers. However, the independent provider stopped providing this service so the number of crisis beds was reduced. It is believed that there are four homes with two crisis beds each, for a total of eight potential beds. However, due to a number of different rationalizations, it is believed that the functional capacity is a total of four beds. The number of crisis beds is insufficient. The MDSOAB should look into the Department’s data collection regarding crisis bed placements and crisis requests. How does the Department know how many crisis beds would be sufficient, even in an ideal scenario?
The Department has stated that this information/data is difficult to discern. OADS staff will be providing a presentation on crisis services at the MDSOAB meeting, on Tuesday 7/17. If people have questions regarding this for the Department they can send them to Mark (email@example.com). People spend much longer in crisis placements than was likely ever intended. Crisis beds are not long-term solutions – they are temporary, short-term interventions. The State recognizes if a client has additional medical needs by providing the medical add-on, which comes with additional funding. But, there are many people with extreme behavioral needs; the State eliminated the behavioral add-on years ago. Behavioral needs require extra staffing and support, which is not adequately funded. This creates a cycle of people not receiving the support necessary and falling into crisis. Many people with ID/DD also have some type of mental health issue which compounds the problem. The crisis beds are also now shared with people receiving the Traumatic Brain Injury Waiver, which affects capacity. When people can’t access crisis beds, the only remaining option is the emergency room. Once admitted, people tend to languish in the ER because their needs aren’t being met, their crises escalate, and they have nowhere else to go. The Department has stated that crisis beds aren’t designed for people receiving Section 21, though this is not supported by regulation. Lack of services, or insufficient services, often directly leads to crisis situations. After falling into crisis, some people inevitably need a higher level of care than they would have previously, because of the crisis and the emergence of new behaviors. Crisis services is spelled out in statute; there are some statutory obligations. If agencies don’t contact crisis services prior to the loss of home, it’s hard to go back and recreate this documentation.
2. Other Professional Services:
- Transition Planning: - Parents/families need to be involved in the transition from school to adulthood; they need transition training/planning too as it’s just as much a transition for parents. The laws, available services, and ways of individualizing care need to be explained to parents and more information needs to be made available. Transition planning needs to start earlier than age 14; it needs to start as soon as possible. The lack of consistency with case managers is problematic, and it makes it difficult to plan for the future. There isn’t enough overlap between children’s services and adult services. Everyone needs to recognize that this is one more major leap, and there needs to be people available at the high school level who are really steeped in this information and can work with parents. The terminology is difficult – it’s hard for some people to wrap their heads around a “waiver.” Voc. Rehab’s role isn’t clear for many parents. The Workforce Innovation and Opportunities Act (WIOA) has changed Voc. Rehab, and it has a lot of ground to make up. There is not a central information hub during the transition phase. Parents, families, and people supported are in the position of having to become experts about every facet of the system. Transition fairs are wonderful, but then you realize there are 45 different organizations, which is overwhelming. How do you begin to sort through all of that as a parent? Specialists in transition planning are extremely beneficial; the system needs more of them. The school setting gets parents accustomed to having someone take control, set meetings, develop next steps, and so on, whereas the adult system is not setup this way, and it’s a shock for parents. The people around this table are arguably the most knowledgeable in the state about the system – if people around this table are confused, imagine how difficult it must be for the average parent or family member to navigate. Even amazing teachers and children’s case managers don’t have all of the information needed – such as knowledge about waitlists, the potential to utilize and transition to Section 29 services while still in school to help bridge the gap and avoid the cliff of no services, and so on. Even when the people involved know about transition planning, when to start, what to do, and what services to look into, it still can all finally come to fruition too late and still be insufficient. The expansion of Section 29, and the ability to begin the service while still in school, is immensely helpful for transitioning from school to adult services, while avoiding the cliff of no services, and feelings of isolation and loneliness that can manifest when people are removed from the school setting to which they’ve been accustomed for the majority of their lives. This also helps to avoid loss of skills during transition. The Blueprint for Effective Transition, which this group created and was embraced by both OCFS and OADS at the time of its creation, ought to be fully implemented.
- Respite: -Parents need to be informed about respite options. No one in attendance has ever accessed respite care, and wouldn’t know how to go about doing so should they desire/need to. From a parental point of view, you handle your own crises, and there is guilt and shame associated with having your son or daughter’s behaviors escalate so they’re “out of control.” Also, having to air your “dirty laundry” to a bureaucracy, while not knowing what that bureaucracy is going to do, whether it could put your guardianship at risk, etc., is terrifying. This is viewed as a risk for many parents. There should be increased access to respite during the “cliff of no services” period, when people are waiting for services. Perhaps the process for applying for respite services is so complex that few people are able to take advantage of it. In order to paint the picture of need, you’re forcing the individual to unpack a lot of things, which can be very harmful.
- Behavioral services: -The behavior plan regulations, make the submission and review of the behavior plan very difficult. The portion of the plan that’s most useful in consumer care is a very small portion of what is submitted for review. It makes the process feel very daunting. It’s difficult to find someone who can sign off on behavior plans. It’s a challenging service to provide, staff need a much higher skill set, and hiring and retaining staff at this skill level is difficult with the current rates. The rates are insufficient – if someone requires more than 168 hours, the rate is reduced by 12% per hour, it’s not incentivized. Homes have been ripped apart by residents, and those costs are absorbed by the agency, because residential contracts don’t permit charging the tenant, and the State doesn’t reimburse agencies.
- Communication: -A large portion of people having behavioral issues have trouble communicating them. We need more communication specialists.
3. Wait List Management: -If the Legislature overrides the Governor’s veto, there’s the possibility for 300 people to come off of the waitlist. How will these offers be made? No one is currently waiting for Priority 1, so what are the procedures for making offers for Priority 2? The Department is ten years away from eliminating a 1700+ person waitlist. Many providers are at capacity currently. The queue for Section 29 needs to be transparent. Two-bed homes are unlicensed, so you lose those checks and balances. The Department ought to look at creative solutions to reducing the waitlist such as self-directed waivers and group foster care. A parent presented these creative ideas to Department staff as a way to reduce the waitlist, to which the Department replied that self-directed waivers and funding are being explored by the Developmental Disabilities Council, and they did not appear to be motivated to reduce the waitlist.
4. Adult Protective Services: -DHHS issued a new set of rules for APS and reportable events (more information on these changes can be found in the June meeting minutes). Once you file an APS report, you don’t know what happens next – this has always been an issue but was formally codified in the new APS rules. Anything pertaining to abuse, neglect, or exploitation gets pushed to the 24-hour hotline. After you make the report, your interaction with APS is over. You don’t have any access to any information at all. APS reports are no longer in EIS. There might be a note in EIS about abuse, that is very vague, detailing that it came through the crisis hotline, but any information about a potential APS referral is not included. A parent stated that she was informed that staff at her son’s group home had left her son alone in a hot, enclosed room with no water last week during the heat wave. The House Manager filed a complaint with the State. In these situations, can the agency simply fire the staff person? Will parents ever find out what happened? What should parents do? Parents can file APS reports as well. It is an overwhelming, confusing, complicated system. There are barriers to understanding what you’re supposed to do. The system is broken, and all of us are left to pick up the pieces. There needs to be a roadmap for services and the system for parents.
5. Guardianship: -There was a complete repeal and replace of the probate code, which will take effect in July. The new probate code mandates that least-restrictive alternatives be explored prior to applying for guardianship – such as assistive technology, supported decision making, etc.
6. Case Management: -What case management can and cannot do is not well known to parents. A good case manager makes all the difference. Do community case managers duties vary from agency to agency? If you have a more experienced case manager who understands the full scope of the responsibilities and resources available there’s a dramatic difference in the quality of the service versus someone who is new to the system, right out of college, and using the job as a career stepping stone. Case management is the luck of the draw. If you have a good, committed case a manager you’re golden; if you don’t you’re out of luck. A good case manager sees the community that’s the context in which you’re providing the service. A more assertive personality is needed to best provide case management services. The regulations and documentation required of case managers is overwhelming. Many families and consumers don’t realize that they can advocate for a different case manager if they’re not satisfied with the performance of the one assigned to them.
7. Person-Centered Planning:
- Futures Planning: -How much control do people have over their own lives? The person needs to be the center of every decision; everything should be self-directed.
9. Section 29 Services: -The expanded Section 29 cap has made a world of difference in a very positive way..
10. Work, and Finding Work: [This topic was not covered in the meeting. Please send any comments on this topic to Mark (firstname.lastname@example.org)]
11. Other Topics of Interest
- Transportation: -Non-medical transportation is not available, which severely affects community inclusion. People want to participate in community activities but they have no way to get there without access to non-medical transportation. Providers can transport people to community activities, and there is mileage reimbursement. DHHS does not reimburse providers for mileage directly; it is included in the rate. Transportation problems run rampant. People are never sure who is going to show up, or when. People miss numerous appointments, rides show up too early or too late. It’s a mess. Using taxis opens the door for exploitation. Getting into an unfamiliar vehicle with an unfamiliar person can be very challenging and can result in behaviors escalating, which can then result in providers wanting more staff with the individual. The Department uses a brokerage system for transportation, which includes three transportation brokers, one of which is LogistiCare. The broker agencies are paid a flat fee based on the number of MaineCare recipients in their service areas, rather than being paid based on the number of rides they provide. This does not provide incentive for them to perform well. Agencies often absorb the costs of providing transportation to clients because the regulations are very burdensome. Transportation used to be a line item in the rate, and could be negotiated. Now, it’s unclear how the rate truly covers this; there is not a breakdown of the rate. DHHS is involved with transportation for non-emergency medical transportation (NEMT); Maine DOT supports general public trips using a series of transportation providers, like KVCAP, where the ride is subsidized with FTA (Federal Transit Administration) funds. This requires a fare to be paid by the rider.
- Inclusion in the Community: -There are a lot of ways the system could be streamlined. With the rising costs, and the rate cuts, there just isn’t room in the rate for true community inclusion. Agencies are providing for community inclusion; the rates just don’t adequately cover it. The Department outlines community supports and home supports. Home supports typically do not include transportation costs. If you have someone receiving home supports who wants to go out in the evening, unless your community supports program is supporting that, you don’t get reimbursed for the mileage. Sometimes people confuse community supports, home supports, and community inclusion. The Department is looking at community supports for the community inclusion portion of the individual’s life, and home supports for the residential portion of a person’s life. There is a dichotomy there and an expectation of families – people living at home should also be able to go and do things in the community, but those things are not reimbursed by MaineCare at all. Home supports do include some community inclusion. When you try to justify any type of extracurricular event beyond the staffing needs of the people in the home, it’s not included or even taken into consideration. There are barriers to increased community inclusion with home supports due to the bureaucracy involved with getting staffing approved. There are a lot of people who would not get out in the community unless their home support staff were bringing them out. There needs to be a way to adequately address this type of need.
- Communication with Department: -The Department ought to participate in regular, inclusive dialogue, through established forums like this Coalition.
Cullen: I want to thank you, Mark, for being here today and last month! Please feel empowered to contact Mark with more feedback (email@example.com). It’s important that we continue discussing the challenges with the system, so that we can bring them to light, and put pressure to address them.
[Round of applause]
End of presentation.
DHHS – Office of Aging and Disability Services (OADS) and Office of Child and Family Services (OCFS): No one was present from the Department.
-It was stated that there is an OADS Crisis Services Stakeholders Meeting tomorrow in Augusta at 9:00am.
Cullen: This Coalition, originally created by parents and has grown to include a variety of different stakeholders, has been in existence, holding standing meetings for almost twelve years. Rather than reinvent the wheel, perhaps the Department would be best served by having the Coalition act as this type of stakeholder forum. I would encourage DHHS to work with existing groups, such as the Coalition, rather than create their own.
Disability Rights Maine (DRM) - drme.org
Nell Brimmer: Nothing to report this month.
Cullen: As I’ve mentioned at previous meetings, both the House and Senate FY 19 T-HUD bills are favorable, include significant appropriations above the President’s budget request, and provide increases to HUD programs versus FY 18 enacted funding. However, the House bill would not provide enough funding to fund all Section 8 renewals, whereas the Senate bill would.
State Legislature Update:
Cullen Ryan: The Legislature is meeting today to address the Governor’s vetoes, including LD 924 and LD 925, the supplemental budget bills which include funding increases for direct care workers.
Cullen: Speaking with one unified voice to our Delegation is important, as it not only informs them on issues that affect the people about whom we care, it also helps them to make good policy decisions and positions them well to be leaders on these critical issues. The Maine Together Coalition, which was established earlier this year, is a nonpartisan coalition of Maine organizations. Its goal is to have a broad group of voices come together to form a united front and speak with one voice on various issues to Maine’s Delegation. I’m wondering if this Coalition would like to participate in the Maine Together Coalition?
-There was a motion for the Maine Coalition for Housing and Quality Services to participate in the Maine Together Coalition. The motion was seconded and, after discussion, approved unanimously.
The next meeting will be on August 13, 2018
Featured Speakers and Topic: Carol A. Snyder, Maine Field Human Resources Manager, and Amy Wilson, Facility Manager, LogistiCare. Topic: LogistiCare 101.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).