December 14, 2020
Minutes
Minutes
Attendees via Zoom: Amanda Hodgkins, Anne Marie Riley, Beth Morse, Betsy Mahoney, Bonnie Robinson, Brenda Smith, Bryan Gordon, Craig Patterson, Darla Chafin, David Cowing, Debbie Dionne, Ed & Suellen Doggett, Elizabeth baranick, Erin Salvo, Heidi Mansir, Independence Association, Julie Brennan, Jessica Cavanaugh, Kim Humphrey, Kristin McPherson, Laura Cordes, Lily Lin, Lorraine DeFreitas, Maggie Hoffman, Margaret Cardoza, Mark Kemmerle, Mary Chris Semrow, Megan Meehan, Paula Bush, Nancy Peavey, Peter Stuckey, Robin Levesque, Rozanne Drucker, Sarah Robinson, Sierra Hillebrand, Staci Converse, Stacy Lamontagne, Sue Murphy, Julie Brennan, Roxanne Drucker, Mary Chris Semrow, Debbie Dionne, M Zack, Helen Hemminger, Vickey Rand, Cullen Ryan, and a few callers who did not identify themselves.
Click here for a link to a recording of this meeting
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: Erin Salvo, Associate Director, Adult Protective Services, DHHS-OADS. www.maine.gov/dhhs/oads Topic: Guardianship and reporting requirements since September 2019.
Cullen: Today we have Erin Salvo, Associate Director, Adult Protective Services, DHHS-OADS, providing a presentation on guardianship and reporting requirements since September 2019, resulting from legislation that passed changing the probate code pertaining to guardianship. I really appreciate Erin’s openness, transparency, and willingness to take a look at individual cases, looking at circumstances for what they are, and helping us reach a good balance regarding guardianship. Guardianship has changed and evolved over the years, most recently to ensure that people who don’t require guardianship have options that provide them the most independence and control over decision-making as possible. Though, care has been taken to ensure that people who really do need guardianship can receive it. It really is a balance. Being a guardian requires paperwork and reporting, which is also part of today’s presentation (forms are linked below). Thank you for being here, Erin!
Erin Salvo: As Cullen said, I am the Associate Director of Adult Protective Services. I oversee public guardianship and APS investigations, among other things. The focus of my presentation is around public guardianship and the changes in the guardianship section of the probate code that came about a little more than a year ago now. If there is time at the end, I’m open to discussing APS investigations as well.
Begin Presentation (Click here for the presentation) (There are various forms required regarding guardianship, click here for the PP-201, Petition for Appointment of Guardian Form, click here for the PP-502, Guardianship Plan-Adult Form, click here for the PP-209, Interim and Annual Report of Guardian form, click here for more applicable forms.)
Brief summary of changes to guardianship since September 2019:
Erin: There are often times when we know that someone is making decisions, but they are not good decisions. That’s one of those factors that can be challenging to identify whether the individual lacks capacity in terms of meeting the standard of requiring guardianship or not. It’s about the person’s ability and capacity to make decisions, not whether they are good decisions or not. There are specific areas that requires the person petitioning for guardianship to list what other least-restrictive alternatives have been tried and failed, thus necessitating guardianship or conservatorship. There is only so much a guardian can do, they can’t force someone to live in a certain place, for example. Self-determination and the needs, wants, and desires of the individual must be the priority, unless they will cause harm to the person. For instance, if someone has lived their entire life in a certain county, their supports are there, and they want to remain there, the guardian saying they should live in a different county wouldn’t promote self-determination.
We open up a guardianship study and assign an investigator to look into cases to determine whether or not guardianship is appropriate based on the criteria in the probate code. Suitable private guardians, such as family members and close friends, are looked into for due diligence before jumping to public guardianship too quickly. If someone is able and willing to be a private guardian, we can help that individual as they pursue it through the court system. There are uncontested and contested cases. In contested cases, the court will assign an attorney, or the individual can hire one to represent their interests and argue that guardianship isn’t appropriate. In all cases, someone will visit the individual and report to the court their impression regarding the need for a guardian and who would be appropriate to fill that role.
Generally speaking, public guardianship is very similar and consistent with the duties of private guardians. Our internal policy is for guardianship reps to have face-to-face visits every 30 to 60 days with the individual. This has changed with COIVD, where we have stopped face-to-face meetings to limit points of exposure. Hopefully we can return to seeing everyone in person before too long, but there is that tough balance between keeping people safe and knowing what’s going on with the individual to be able to support them adequately. I am happy to answer any questions people might have. Please don’t hesitate to reach out via email ([email protected]) or telephone (207-287-2630) with any questions after the meeting as well.
Discussion:
-There was a question regarding end of life information/paperwork and where it ought to be included.
Erin: I think that it’s an update that could be included in the annual report, though I don’t know if they’ve given specific instructions around that.
-A parent stated that she has full guardianship of her daughter. A year ago, her case manager sent a list of items that may need to be reported on, but then nothing ever came of it.
Erin: The probate code language tried to take that into account. Until the court notifies a guardian, they don’t have to complete those requirements. I think part of that stems from the courts not having the infrastructure to have a list of all the guardianships and get out a notice. They were relying more on future interactions, so if you haven’t had any interactions you likely wouldn’t have been notified. I don’t know if there’s a plan for there to be a formal process, but you could always contact the probate court directly to inquire.
Cullen: Can you walk us through what those annual reports look like, what would be included, and how one would submit it to the court.
Erin: I can show you what the form looks like (Erin shared her screen to review the PP-209 update form. Click here for a link to the form PP-209). It’s a template where you can enter the basic information, docket number, indicate whether it’s an annual or interim report. It’s three pages total, and it walks through what’s going on currently, living arrangements, and it asks for a series of summaries: Supported-decision making, technological assistance, medical services, educational and vocational services, and other supports provided to the individual; a summary of the guardian’s visits to the individual; actions taken on behalf of the individual; to what extent the individual is participating in their own decision-making; along with some more specific questions. This gives the court a sense of what’s going on with the individual. The form gets filed in the county in which the guardianship is based. The forms on the website are PDFs, and it has to be downloaded and you need software to make it fillable. If you contact the court, they can give you a workable form as well.
-A parent stated that writing down the exact day a guardian visits seems institutional. She stated that she has approximated the dates, and that the courts have been flexible regarding this; they just want to ensure that you are making contact.
-A self-advocate stated that she is looking at the Maine Probate site. She stated that whatever you include on the PP-209 Annual Report form can be seen by the public; you can search for it online. It was asked if more discretion can be made with these reports, have them treated more privately, versus having all of the details be so public. Public announcements for someone under guardianship in certain circumstances may make sense; however, the amount of private information detailed in the annual report seems to be extreme and unnecessary. It’s important for people to be aware that the document is public and can be seen by the public online
Erin: It’s a good question, because as you mentioned someone can search the name of someone under guardianship and see the full docket, including many of the forms themselves. I know that the courts will not display the PP-505 associated with guardianship or conservatorship, which is the document a medical professional fills out regarding diagnoses because it’s very sensitive, private information. Many of the other forms are fully viewable from the website, and we try to be careful recognizing that to ensure not to provide too much detail that could be inappropriate. It’s a balance, because you also must disclose what the court is requesting. When we send the annual reports to the court, the individual is also entitled to a copy of the report, as well as identified interested parties. I don’t have a good strong answer for you, other than that we recognize this and try to be careful of this while still providing what the court is requesting. If there’s especially sensitive information, we’ve asked the court to not put it as a viewable image on the website, so it’s still included in the court’s record but it’s not viewable online. Concerns about privacy have definitely come up.
-A self-advocate asked what the qualifications are of for visitors.
Erin: There is quite a bit of flexibility with the qualifications of the visitor, so long as they are equipped to weigh in on the details of a specific person’s circumstances. There are provisions in the probate code regarding that. But, there’s quite a bit of variability regarding the qualifications of the visitor around the state.
-A self-advocate stated that she was concerned that the judge has the determination regarding who the visitor is and knowing the competence of the visitor is important.
Erin: The language in the probate code simply states that the visitor must have sufficient training or experience about the type of capabilities, abilities, and needs alleged in the petition.
-A self-advocate stated that it’s a very serious thing when a person has their civil rights taken away, is deemed incompetent, etc. A judge has stated that it is his hardest job, taking away someone’s born freedom. The changes in the probate code have assisted with this, ensuring that people retain as many of their rights as possible.
-A parent stated that he and his wife have co-guardianship over their son. They are fortunate to be dealing with a compassionate judge who has requested an annual report every year. It’s reassuring to know the probate court is paying attention to what’s going on, looking out for his son’s best interest. He stated that they were requested to fill out the annual form. When they picked it up, they stressed that it’s a legal form and were advised not to change it. He stated that it’s impossible to convert it from a PDF to a Word file. Dealing with the form is very cumbersome; making it a fillable form would be extremely helpful.
Erin: I don’t have a definite answer on that. I do know that the group that coordinated to bring the changes about in the probate code, the Probate and Trust Law Advisory Committee, includes a subgroup that developed the new probate court forms. My suggestion would be to connect with the court to connect to this group to provide feedback on the forms and their lack of user-friendliness. I know you’re not alone in that challenge.
-A parent stated that she has been asked if her daughter, of whom she has guardianship, has an advanced directive. It was asked if she needs one.
Erin: Usually an advanced directive is in place before guardianship is granted. I’m not sure I’m the person to answer this question.
-Another parent stated that she asked her attorney about this, and the answer was that because she had full guardianship, she didn’t need an advanced directive because as the guardian she would be there making those decisions with her daughter. Another parent stated that she does have an advanced directive. Many feel that an advanced directive is imperative, so that first responders know the individual’s wishes. She stated that her daughter’s doctor felt having an advanced directive was important and strongly suggested having one. She stated that her daughter’s house will call her in an emergency, as does the hospital when she gets there. It’s a hard question. She stated that she has also been given conflicting information, such as that the advanced directive has to be renewed every year, which seems ridiculous.
Erin: With our public guardianship program, if there is a doctor’s recommendation or if someone has expressed their desires about their end of life decision-making, we send their desires to the doctor, so it is on file. There is also the POLST (Physician Order for Life-Sustaining Treatment) Form. There are slightly different versions, which can be found online, but they are also helpful for determining end of life care.
-A self-advocate asked if someone under guardianship can or cannot vote.
Erin: The default is that the individual can vote. Though there is an option for the judge to say they cannot, I have yet to see an instance where this has occurred.
-A self-advocate stated that a judge told her when people fill out the annual report, he compares it with the previous annual report. If there is repetition, almost duplication in the two reports he will flag it to ensure the reports include the necessary information and that it has been sufficiently updated based upon the person’s circumstances each year.
Erin: Thank you very much for inviting me to present today, and please don’t hesitate to reach out to me.
Cullen: Thank you for being here and providing such an informative presentation, Erin! I really appreciate you leading us down the concrete path regarding guardianship and requirements around reporting. Thank you again!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins was unable to join today’s meeting and sent her regrets. She emailed her OADS updates to be included in the minutes:
Craig Patterson: Unfortunately, many of you may have heard these updates already because there’s nothing very new. The biggest update for us really is specific to COVID-19, and the incredible increase of rates of infection, now thoroughly across the state. We continue down the path with all of our various reform work. This week, we have a special review team from CMS visiting this week and part of next, reviewing a lot of data, particularly focused on reportable events, which is why Betsy couldn’t attend the meeting today. This is an activity they’re doing nationwide, it’s not specific to Maine, but we did have some issues regarding reportable events as detailed in the OIG report. So, they are here and working with various stakeholder groups, interviewing people served, and providers. We’ll have more of an update on that for next month. We’ve started the development of our biennial report to the Legislature; we’re working with an agency to help develop all of that.
Laura Cordes – MACSP: Can you walk me through the contents and the timing of the biennial report to the Legislature.
Craig: It varies depending on the Administration. When Paul Saucier came on board, he quickly realized the plans in the previous biennial reports never really moved forward. The purpose is to keep the Legislature updated on our work, issues, and this time around information on all of our reform work. We’ve put a lot of work into identifying areas we see as weaknesses, as well as areas stakeholders have identified as weaknesses. The stakeholder meetings we held last year was very informative, though not surprising, and the feedback received was very helpful to put together the pieces of how we could accomplish longer-term and larger systemic system change. The report will include the status of our reform work and how we’re going to continue to move it forward. I anticipate it will likely be released within maybe four months, after going through internal approval, etc.
-It was asked if the reform workgroup information is available online yet.
Craig: Unfortunately, it is not. We’ve been told again it will be up on the website very soon, perhaps by the end of the week. We’re putting pressure on the Office of Technology to get that up as soon as possible. We want to ensure that information is posted online so we can gather reactions and feedback on the work.
-There was a question regarding COVID restrictions in residential homes, such as limiting visitation.
Craig: My only real response would be if you have concerns the best options is to join that CDC stakeholder call, there is a link on the website for more information on these calls. The CDC is really the entity setting up the guidance and restrictions, so it’s very difficult for me to speak to that. We have heard that there are concerns with that as it relates to persons with disabilities. The reality is that almost all of us have one concern or another at this point that’s generated or caused by COVID-19. We continue to work with the CDC to make things as workable as possible, but it’s very complicated. More OADS COVID-19 updates and related information can also be found the website. We still are continuing our COVID-19 reporting work. We’ve asked agencies and others to report events to us, such as staff not wearing masks which to us is a significant issue. We have seen an increase in reports of that in reportable events. We continue to put out reminders, and when we’re made directly aware of particular agencies not adhering to requirements, we take action. But we don’t know if it doesn’t get reported.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Amanda Hodgkins: We’re working on refining the Transition Age Youth Roadmap, and the steps it will take to complete the work. Most recently I’ve been collaborating with OADS regarding training for case workers on the OADS intake process. We’re trying to get organized regarding what we want to accomplish, and how we will do so.
Cullen: Thank you for being here and continuing to provide updates on transition as that work evolves and progresses.
Special Education Update
-A parent stated that her son has received zero IEP services for the entire year, and pretty much since the pandemic started. It seems inexcusable that no one is making an attempt to follow his IEP. Remote learning has also been a very large barrier for her son. It has all been very challenging and frustrating. It was suggested that she contact Sarah Ferguson with the Department of Education (207-624-6674) to see if she might be able to provide some assistance. It was also suggested that she contact Maine Parent Federation, a parent advocacy agency which may be able to help.
SMACT (Southern Maine Advisory Council on Transition)
Nancy Peavy: SMACT meetings occur on the first Friday of each month, currently via Zoom. As a reminder, if you want to be on the email list feel free to email me ([email protected]). The next meeting in January will include a presentation from the Job Core, which offers free career training for young folks who meet the low-income criteria.
Disability Rights Maine (DRM) Update:
Staci Converse: 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. We’re doing a lot of work around people wanting to go home for the holidays, having difficulties regarding the restrictions out there, etc. I would encourage everyone to keep things person-centered, which is especially important now. We’re also trying to get clear guidance regarding prioritizations for vaccinations, and where people with disabilities fall into the prioritization tiers. We’re also holding a Supported Decision-Making (SDM) training in January.
Federal & Housing Updates:
Cullen: On 12/11, Congress passed, and the President signed a one-week, stop-gap Continuing Resolution, funding agencies at FY 20 levels through 12/18, averting a government shutdown. 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 regressive HUD proposals. On 11/10, the Senate released its FY 21 appropriations bills, including T-HUD. Overall, the Senate bill provides more funding than the Administration’s budget request and provides modest funding increases to HUD programs – though at levels lower than what was proposed by the House. The House and Senate will now negotiate the difference between these two bills, likely landing somewhere in the middle. 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 12/18 when the new 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. Congressional leaders have been negotiating a bipartisan fourth stimulus package: The Bipartisan Emergency COVID Relief Act of 2020. This proposal would provide $908 billion in economic relief, which is more than what the Senate had originally offered, but less than what the House included in its stimulus bill. The proposal would provide: $288 billion in another round of small business aid through the PPP program; $160 billion for state and local governments; Fund federal unemployment benefits at $300 per week for 16 weeks (into April 2021); $25 billion in rental assistance through the Coronavirus Relief Fund; $26 billion in nutrition/agriculture assistance – including a temporary 15% increase in SNAP for 4 months, expansion of the Pandemic-EBT program to cover families with children in child care, temporary increase in WIC, funding for senior nutrition programs including Meals on Wheels; and tens of billions of dollars to other priorities, such as child care, transportation, education, and vaccine distribution.
Craig: If there is another continuing resolution (CR), will it include language to extend the current moratorium on evictions?
Cullen: That’s a great question. There is pressure, including from our Delegation, to include eviction moratorium language in both the stimulus bill and any funding bill that passes, whether that’s another CR or an omnibus bill. However, the current moratorium is an unfunded mandate, there is no funding included to address the underlying issues of tenants not being able to pay rent and as such landlords being unable to pay their own bills. The stimulus package currently includes an eviction moratorium until the end of January 2021 – however, this moratorium is not as inclusive or robust as the CDC’s eviction moratorium, and both lack any funding.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): The CARES Act funding allocated to the state has all been allocated. We’re advocating for DSPs to receive some sort of pandemic or hazard pay, because staffing has become an even larger issue amid the pandemic, and it was a crisis before. We’ve also sent a letter to the Governor requesting that people with ID/DD and the people who provide direct services to this population be included in the first prioritization tier for vaccination.
The 130th Legislative session began on 12/2. The Legislative bill filing deadline or "cloture" is Friday, 12/18. Bills with their initial language will likely all be available for review in early January if not before. Committee Assignments were released on Friday and can now be found online (the list of members for the Education, Health and Human Services (HHS), and Appropriations and Financial Affairs (AFA) committees is listed below).
Health and Human Services Committee – http://legislature.maine.gov/committee/#Committees/HHS
Education and Cultural Affairs – http://legislature.maine.gov/committee/#Committees/EDU
Appropriations and Financial Affairs – http://legislature.maine.gov/committee/#Committees/AFA
Laura: I wanted to highlight that there are two new chairs for the HHS Committee, Senator Claxton and Representative Michelle Meyer. Senator Gratwick had termed out and Representative Hymanson is now a member of AFA. Cathy Breen remains Senate Chair for the AFA Committee and is joined by Representative Teresa Pierce who replaces Representative Gattine. There are a lot of new members on this committee. There are also two new chairs for the Education Committee: Senator Matthie Daughtry and Representative Michael Brennan. Rebecca Millett remains on the committee but as a Representative not a Senator. Committee meetings will be held online, and the public will be able to testify online and/or by phone. Written testimony can still be submitted through email. Legislators are still working out rules/directions for hearing notices, testimony signup, and other details in this process including adding an option for members of the public who want to testify in Augusta or in another location. Next month might be a good time to discuss legislative agendas and priorities.
Cullen: That is a great suggestion, and we would be happy to have you present on this next month! This is the First Session of the Legislature, which means any Legislator may submit any number of bills; there are usually thousands of bills that are submitted and considered. About a third of the Legislature has turned over due to term limits, so we have a lot of education to provide about the needs of people with ID/DD in Maine. Now, before the Legislature gets into full swing, 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 (an anticipated $100 million budget shortfall). This group knows 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 which will affect the people about whom we care.
Laura: By and large, folks ran for office because they’re interested in public service, so they want to hear from you; reaching out isn’t an imposition at all. If people aren’t taking meetings you can still easily reach out through email.
Kim Humphrey – Community Connect: Community Connect Maine has electronic postcards that you can share with your local Legislators. Introduce yourself with a short personal message in an email to your local Legislator(s). Then, include in your email one of these electronic postcard links below. The electronic postcards provide an additional link to several organizational websites that support the I/DD community: Season's Greetings Electronic Postcard and These Are Our Stories Electronic Postcard You Can find more resources at CommunityConnectME.Org. We also have included ways in which you can look up your Legislators and contact them easily.
At 2:00pm, the Zoom meeting abruptly ended. Many people then rejoined the meeting, but more than half did not.
We apologize for this and will prevent it from happening in the future. Thank you for your understanding.
The next meeting will be on Monday, January 11, 2021, 12-2pm, via Zoom.
Featured Speaker: Frederick Murphy III, State & Federal Health Adviser, Market Place Insurance Agency, LLC.
Topic: An overview of Medicaid, Medicare, Medicare Advantage Plans (such as WellCare Maine),
including the differences between the various insurance options.
And, Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP).
Topic: 130th Legislature – Legislative agenda and priorities for the system of care for people with ID/DD.
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
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: Erin Salvo, Associate Director, Adult Protective Services, DHHS-OADS. www.maine.gov/dhhs/oads Topic: Guardianship and reporting requirements since September 2019.
Cullen: Today we have Erin Salvo, Associate Director, Adult Protective Services, DHHS-OADS, providing a presentation on guardianship and reporting requirements since September 2019, resulting from legislation that passed changing the probate code pertaining to guardianship. I really appreciate Erin’s openness, transparency, and willingness to take a look at individual cases, looking at circumstances for what they are, and helping us reach a good balance regarding guardianship. Guardianship has changed and evolved over the years, most recently to ensure that people who don’t require guardianship have options that provide them the most independence and control over decision-making as possible. Though, care has been taken to ensure that people who really do need guardianship can receive it. It really is a balance. Being a guardian requires paperwork and reporting, which is also part of today’s presentation (forms are linked below). Thank you for being here, Erin!
Erin Salvo: As Cullen said, I am the Associate Director of Adult Protective Services. I oversee public guardianship and APS investigations, among other things. The focus of my presentation is around public guardianship and the changes in the guardianship section of the probate code that came about a little more than a year ago now. If there is time at the end, I’m open to discussing APS investigations as well.
Begin Presentation (Click here for the presentation) (There are various forms required regarding guardianship, click here for the PP-201, Petition for Appointment of Guardian Form, click here for the PP-502, Guardianship Plan-Adult Form, click here for the PP-209, Interim and Annual Report of Guardian form, click here for more applicable forms.)
Brief summary of changes to guardianship since September 2019:
- Increased focus on least restrictive alternatives to guardianship – full guardianship is the last alternative.
- Increased focus on self-determination – The new process promotes self-determination, recognizing everyone should be able to make decisions for themselves.
- Once someone is identified for guardianship, their beliefs, needs, wants, and desires are still central to the process and taken into consideration.
Erin: There are often times when we know that someone is making decisions, but they are not good decisions. That’s one of those factors that can be challenging to identify whether the individual lacks capacity in terms of meeting the standard of requiring guardianship or not. It’s about the person’s ability and capacity to make decisions, not whether they are good decisions or not. There are specific areas that requires the person petitioning for guardianship to list what other least-restrictive alternatives have been tried and failed, thus necessitating guardianship or conservatorship. There is only so much a guardian can do, they can’t force someone to live in a certain place, for example. Self-determination and the needs, wants, and desires of the individual must be the priority, unless they will cause harm to the person. For instance, if someone has lived their entire life in a certain county, their supports are there, and they want to remain there, the guardian saying they should live in a different county wouldn’t promote self-determination.
We open up a guardianship study and assign an investigator to look into cases to determine whether or not guardianship is appropriate based on the criteria in the probate code. Suitable private guardians, such as family members and close friends, are looked into for due diligence before jumping to public guardianship too quickly. If someone is able and willing to be a private guardian, we can help that individual as they pursue it through the court system. There are uncontested and contested cases. In contested cases, the court will assign an attorney, or the individual can hire one to represent their interests and argue that guardianship isn’t appropriate. In all cases, someone will visit the individual and report to the court their impression regarding the need for a guardian and who would be appropriate to fill that role.
Generally speaking, public guardianship is very similar and consistent with the duties of private guardians. Our internal policy is for guardianship reps to have face-to-face visits every 30 to 60 days with the individual. This has changed with COIVD, where we have stopped face-to-face meetings to limit points of exposure. Hopefully we can return to seeing everyone in person before too long, but there is that tough balance between keeping people safe and knowing what’s going on with the individual to be able to support them adequately. I am happy to answer any questions people might have. Please don’t hesitate to reach out via email ([email protected]) or telephone (207-287-2630) with any questions after the meeting as well.
Discussion:
-There was a question regarding end of life information/paperwork and where it ought to be included.
Erin: I think that it’s an update that could be included in the annual report, though I don’t know if they’ve given specific instructions around that.
-A parent stated that she has full guardianship of her daughter. A year ago, her case manager sent a list of items that may need to be reported on, but then nothing ever came of it.
Erin: The probate code language tried to take that into account. Until the court notifies a guardian, they don’t have to complete those requirements. I think part of that stems from the courts not having the infrastructure to have a list of all the guardianships and get out a notice. They were relying more on future interactions, so if you haven’t had any interactions you likely wouldn’t have been notified. I don’t know if there’s a plan for there to be a formal process, but you could always contact the probate court directly to inquire.
Cullen: Can you walk us through what those annual reports look like, what would be included, and how one would submit it to the court.
Erin: I can show you what the form looks like (Erin shared her screen to review the PP-209 update form. Click here for a link to the form PP-209). It’s a template where you can enter the basic information, docket number, indicate whether it’s an annual or interim report. It’s three pages total, and it walks through what’s going on currently, living arrangements, and it asks for a series of summaries: Supported-decision making, technological assistance, medical services, educational and vocational services, and other supports provided to the individual; a summary of the guardian’s visits to the individual; actions taken on behalf of the individual; to what extent the individual is participating in their own decision-making; along with some more specific questions. This gives the court a sense of what’s going on with the individual. The form gets filed in the county in which the guardianship is based. The forms on the website are PDFs, and it has to be downloaded and you need software to make it fillable. If you contact the court, they can give you a workable form as well.
-A parent stated that writing down the exact day a guardian visits seems institutional. She stated that she has approximated the dates, and that the courts have been flexible regarding this; they just want to ensure that you are making contact.
-A self-advocate stated that she is looking at the Maine Probate site. She stated that whatever you include on the PP-209 Annual Report form can be seen by the public; you can search for it online. It was asked if more discretion can be made with these reports, have them treated more privately, versus having all of the details be so public. Public announcements for someone under guardianship in certain circumstances may make sense; however, the amount of private information detailed in the annual report seems to be extreme and unnecessary. It’s important for people to be aware that the document is public and can be seen by the public online
Erin: It’s a good question, because as you mentioned someone can search the name of someone under guardianship and see the full docket, including many of the forms themselves. I know that the courts will not display the PP-505 associated with guardianship or conservatorship, which is the document a medical professional fills out regarding diagnoses because it’s very sensitive, private information. Many of the other forms are fully viewable from the website, and we try to be careful recognizing that to ensure not to provide too much detail that could be inappropriate. It’s a balance, because you also must disclose what the court is requesting. When we send the annual reports to the court, the individual is also entitled to a copy of the report, as well as identified interested parties. I don’t have a good strong answer for you, other than that we recognize this and try to be careful of this while still providing what the court is requesting. If there’s especially sensitive information, we’ve asked the court to not put it as a viewable image on the website, so it’s still included in the court’s record but it’s not viewable online. Concerns about privacy have definitely come up.
-A self-advocate asked what the qualifications are of for visitors.
Erin: There is quite a bit of flexibility with the qualifications of the visitor, so long as they are equipped to weigh in on the details of a specific person’s circumstances. There are provisions in the probate code regarding that. But, there’s quite a bit of variability regarding the qualifications of the visitor around the state.
-A self-advocate stated that she was concerned that the judge has the determination regarding who the visitor is and knowing the competence of the visitor is important.
Erin: The language in the probate code simply states that the visitor must have sufficient training or experience about the type of capabilities, abilities, and needs alleged in the petition.
-A self-advocate stated that it’s a very serious thing when a person has their civil rights taken away, is deemed incompetent, etc. A judge has stated that it is his hardest job, taking away someone’s born freedom. The changes in the probate code have assisted with this, ensuring that people retain as many of their rights as possible.
-A parent stated that he and his wife have co-guardianship over their son. They are fortunate to be dealing with a compassionate judge who has requested an annual report every year. It’s reassuring to know the probate court is paying attention to what’s going on, looking out for his son’s best interest. He stated that they were requested to fill out the annual form. When they picked it up, they stressed that it’s a legal form and were advised not to change it. He stated that it’s impossible to convert it from a PDF to a Word file. Dealing with the form is very cumbersome; making it a fillable form would be extremely helpful.
Erin: I don’t have a definite answer on that. I do know that the group that coordinated to bring the changes about in the probate code, the Probate and Trust Law Advisory Committee, includes a subgroup that developed the new probate court forms. My suggestion would be to connect with the court to connect to this group to provide feedback on the forms and their lack of user-friendliness. I know you’re not alone in that challenge.
-A parent stated that she has been asked if her daughter, of whom she has guardianship, has an advanced directive. It was asked if she needs one.
Erin: Usually an advanced directive is in place before guardianship is granted. I’m not sure I’m the person to answer this question.
-Another parent stated that she asked her attorney about this, and the answer was that because she had full guardianship, she didn’t need an advanced directive because as the guardian she would be there making those decisions with her daughter. Another parent stated that she does have an advanced directive. Many feel that an advanced directive is imperative, so that first responders know the individual’s wishes. She stated that her daughter’s doctor felt having an advanced directive was important and strongly suggested having one. She stated that her daughter’s house will call her in an emergency, as does the hospital when she gets there. It’s a hard question. She stated that she has also been given conflicting information, such as that the advanced directive has to be renewed every year, which seems ridiculous.
Erin: With our public guardianship program, if there is a doctor’s recommendation or if someone has expressed their desires about their end of life decision-making, we send their desires to the doctor, so it is on file. There is also the POLST (Physician Order for Life-Sustaining Treatment) Form. There are slightly different versions, which can be found online, but they are also helpful for determining end of life care.
-A self-advocate asked if someone under guardianship can or cannot vote.
Erin: The default is that the individual can vote. Though there is an option for the judge to say they cannot, I have yet to see an instance where this has occurred.
-A self-advocate stated that a judge told her when people fill out the annual report, he compares it with the previous annual report. If there is repetition, almost duplication in the two reports he will flag it to ensure the reports include the necessary information and that it has been sufficiently updated based upon the person’s circumstances each year.
Erin: Thank you very much for inviting me to present today, and please don’t hesitate to reach out to me.
Cullen: Thank you for being here and providing such an informative presentation, Erin! I really appreciate you leading us down the concrete path regarding guardianship and requirements around reporting. Thank you again!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins was unable to join today’s meeting and sent her regrets. She emailed her OADS updates to be included in the minutes:
- This past month – we have seen an increase in COVID-19 outbreaks with agencies so we’re focusing on supporting agencies who are dealing with this. This has included joining the CDC on calls with providers and helping COVID-positive staff access social supports services, which includes housing when needed.
- Two reform workgroups have been meeting – Community Membership and Innovation. The website page where we are hosting information for this project should be up by the end of the week. The Quality Assurance &Quality Improvement reform workgroup will start in late February.
- HCBS Settings Rule Update: OADS staff are continuing with the validations for residential and community support programs. At this time this work is being all done remotely – through desk level reviews and individual experience assessments. We are on track to complete the residential validations by the end of January and the community support validations by the end of June.
Craig Patterson: Unfortunately, many of you may have heard these updates already because there’s nothing very new. The biggest update for us really is specific to COVID-19, and the incredible increase of rates of infection, now thoroughly across the state. We continue down the path with all of our various reform work. This week, we have a special review team from CMS visiting this week and part of next, reviewing a lot of data, particularly focused on reportable events, which is why Betsy couldn’t attend the meeting today. This is an activity they’re doing nationwide, it’s not specific to Maine, but we did have some issues regarding reportable events as detailed in the OIG report. So, they are here and working with various stakeholder groups, interviewing people served, and providers. We’ll have more of an update on that for next month. We’ve started the development of our biennial report to the Legislature; we’re working with an agency to help develop all of that.
Laura Cordes – MACSP: Can you walk me through the contents and the timing of the biennial report to the Legislature.
Craig: It varies depending on the Administration. When Paul Saucier came on board, he quickly realized the plans in the previous biennial reports never really moved forward. The purpose is to keep the Legislature updated on our work, issues, and this time around information on all of our reform work. We’ve put a lot of work into identifying areas we see as weaknesses, as well as areas stakeholders have identified as weaknesses. The stakeholder meetings we held last year was very informative, though not surprising, and the feedback received was very helpful to put together the pieces of how we could accomplish longer-term and larger systemic system change. The report will include the status of our reform work and how we’re going to continue to move it forward. I anticipate it will likely be released within maybe four months, after going through internal approval, etc.
-It was asked if the reform workgroup information is available online yet.
Craig: Unfortunately, it is not. We’ve been told again it will be up on the website very soon, perhaps by the end of the week. We’re putting pressure on the Office of Technology to get that up as soon as possible. We want to ensure that information is posted online so we can gather reactions and feedback on the work.
-There was a question regarding COVID restrictions in residential homes, such as limiting visitation.
Craig: My only real response would be if you have concerns the best options is to join that CDC stakeholder call, there is a link on the website for more information on these calls. The CDC is really the entity setting up the guidance and restrictions, so it’s very difficult for me to speak to that. We have heard that there are concerns with that as it relates to persons with disabilities. The reality is that almost all of us have one concern or another at this point that’s generated or caused by COVID-19. We continue to work with the CDC to make things as workable as possible, but it’s very complicated. More OADS COVID-19 updates and related information can also be found the website. We still are continuing our COVID-19 reporting work. We’ve asked agencies and others to report events to us, such as staff not wearing masks which to us is a significant issue. We have seen an increase in reports of that in reportable events. We continue to put out reminders, and when we’re made directly aware of particular agencies not adhering to requirements, we take action. But we don’t know if it doesn’t get reported.
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Amanda Hodgkins: We’re working on refining the Transition Age Youth Roadmap, and the steps it will take to complete the work. Most recently I’ve been collaborating with OADS regarding training for case workers on the OADS intake process. We’re trying to get organized regarding what we want to accomplish, and how we will do so.
Cullen: Thank you for being here and continuing to provide updates on transition as that work evolves and progresses.
Special Education Update
-A parent stated that her son has received zero IEP services for the entire year, and pretty much since the pandemic started. It seems inexcusable that no one is making an attempt to follow his IEP. Remote learning has also been a very large barrier for her son. It has all been very challenging and frustrating. It was suggested that she contact Sarah Ferguson with the Department of Education (207-624-6674) to see if she might be able to provide some assistance. It was also suggested that she contact Maine Parent Federation, a parent advocacy agency which may be able to help.
SMACT (Southern Maine Advisory Council on Transition)
Nancy Peavy: SMACT meetings occur on the first Friday of each month, currently via Zoom. As a reminder, if you want to be on the email list feel free to email me ([email protected]). The next meeting in January will include a presentation from the Job Core, which offers free career training for young folks who meet the low-income criteria.
Disability Rights Maine (DRM) Update:
Staci Converse: 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. We’re doing a lot of work around people wanting to go home for the holidays, having difficulties regarding the restrictions out there, etc. I would encourage everyone to keep things person-centered, which is especially important now. We’re also trying to get clear guidance regarding prioritizations for vaccinations, and where people with disabilities fall into the prioritization tiers. We’re also holding a Supported Decision-Making (SDM) training in January.
Federal & Housing Updates:
Cullen: On 12/11, Congress passed, and the President signed a one-week, stop-gap Continuing Resolution, funding agencies at FY 20 levels through 12/18, averting a government shutdown. 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 regressive HUD proposals. On 11/10, the Senate released its FY 21 appropriations bills, including T-HUD. Overall, the Senate bill provides more funding than the Administration’s budget request and provides modest funding increases to HUD programs – though at levels lower than what was proposed by the House. The House and Senate will now negotiate the difference between these two bills, likely landing somewhere in the middle. 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 12/18 when the new 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. Congressional leaders have been negotiating a bipartisan fourth stimulus package: The Bipartisan Emergency COVID Relief Act of 2020. This proposal would provide $908 billion in economic relief, which is more than what the Senate had originally offered, but less than what the House included in its stimulus bill. The proposal would provide: $288 billion in another round of small business aid through the PPP program; $160 billion for state and local governments; Fund federal unemployment benefits at $300 per week for 16 weeks (into April 2021); $25 billion in rental assistance through the Coronavirus Relief Fund; $26 billion in nutrition/agriculture assistance – including a temporary 15% increase in SNAP for 4 months, expansion of the Pandemic-EBT program to cover families with children in child care, temporary increase in WIC, funding for senior nutrition programs including Meals on Wheels; and tens of billions of dollars to other priorities, such as child care, transportation, education, and vaccine distribution.
Craig: If there is another continuing resolution (CR), will it include language to extend the current moratorium on evictions?
Cullen: That’s a great question. There is pressure, including from our Delegation, to include eviction moratorium language in both the stimulus bill and any funding bill that passes, whether that’s another CR or an omnibus bill. However, the current moratorium is an unfunded mandate, there is no funding included to address the underlying issues of tenants not being able to pay rent and as such landlords being unable to pay their own bills. The stimulus package currently includes an eviction moratorium until the end of January 2021 – however, this moratorium is not as inclusive or robust as the CDC’s eviction moratorium, and both lack any funding.
State Legislature Update:
Laura Cordes – MACSP (Maine Association for Community Service Providers): The CARES Act funding allocated to the state has all been allocated. We’re advocating for DSPs to receive some sort of pandemic or hazard pay, because staffing has become an even larger issue amid the pandemic, and it was a crisis before. We’ve also sent a letter to the Governor requesting that people with ID/DD and the people who provide direct services to this population be included in the first prioritization tier for vaccination.
The 130th Legislative session began on 12/2. The Legislative bill filing deadline or "cloture" is Friday, 12/18. Bills with their initial language will likely all be available for review in early January if not before. Committee Assignments were released on Friday and can now be found online (the list of members for the Education, Health and Human Services (HHS), and Appropriations and Financial Affairs (AFA) committees is listed below).
Health and Human Services Committee – http://legislature.maine.gov/committee/#Committees/HHS
- Ned Claxton, Chair (D-Androscoggin)
- Joseph Baldacci (D- Penobscot)
- Marianne Moore (R-Washington)
- Michele Meyer, Chair (D-Eliot)
- Margaret Craven (D-Lewiston)
- Anne C. Perry (D-Calais)
- Colleen M. Madigan (D-Waterville)
- Holly B. Stover (D-Boothbay)
- Samuel Lewis Zager (D-Portland)
- Kathy Irene Javner (R-Chester)*
- Abigail W. Griffin (R-Levant)
- Jonathan M. Connor (R-Lewiston)
- Michael H. Lemelin (R-Chelsea)
Education and Cultural Affairs – http://legislature.maine.gov/committee/#Committees/EDU
- Matthea Daughtry, Chair (D-Cumberland)
- Joseph Rafferty (D-York)
- David C. Woodsome (R-York)
- Michael F. Brennan, Chair (D-Portland)
- Rebecca J. Millett (D-Cape Elizabeth)
- David Harold McCrea (D-Fort Fairfield)
- Janice S. Dodge (D-Belfast)
- W. Edward Crockett (D-Portland)
- Suzanne M. Salisbury (D-Westbrook)
- Paul A. Stearns (R-Guilford)*
- Heidi H. Sampson (R-Alfred)
- Sheila A. Lyman (R-Livermore Falls)
- Timothy M. Roche (R-Wells)
Appropriations and Financial Affairs – http://legislature.maine.gov/committee/#Committees/AFA
- Catherine E. Breen, Chair (D-Cumberland)
- Donna Bailey (D-York)
- Paul T. Davis, Sr. (R-Piscataquis)
- Teresa S. Pierce, Chair (D-Falmouth)
- John L. Martin (D-Eagle Lake)
- Patricia Hymanson (D-York)
- Jessica L. Fay (D-Raymond)
- Barbara A. Cardone (D-Bangor)
- Kristen Sarah Cloutier (D-Lewiston)
- H. Sawin Millett, Jr. (R-Waterford)*
- Amy Bradstreet Arata (R-New Gloucester)
- Patrick W. Corey (R-Windham)
- Justin Fecteau (R-Augusta)
Laura: I wanted to highlight that there are two new chairs for the HHS Committee, Senator Claxton and Representative Michelle Meyer. Senator Gratwick had termed out and Representative Hymanson is now a member of AFA. Cathy Breen remains Senate Chair for the AFA Committee and is joined by Representative Teresa Pierce who replaces Representative Gattine. There are a lot of new members on this committee. There are also two new chairs for the Education Committee: Senator Matthie Daughtry and Representative Michael Brennan. Rebecca Millett remains on the committee but as a Representative not a Senator. Committee meetings will be held online, and the public will be able to testify online and/or by phone. Written testimony can still be submitted through email. Legislators are still working out rules/directions for hearing notices, testimony signup, and other details in this process including adding an option for members of the public who want to testify in Augusta or in another location. Next month might be a good time to discuss legislative agendas and priorities.
Cullen: That is a great suggestion, and we would be happy to have you present on this next month! This is the First Session of the Legislature, which means any Legislator may submit any number of bills; there are usually thousands of bills that are submitted and considered. About a third of the Legislature has turned over due to term limits, so we have a lot of education to provide about the needs of people with ID/DD in Maine. Now, before the Legislature gets into full swing, 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 (an anticipated $100 million budget shortfall). This group knows 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 which will affect the people about whom we care.
Laura: By and large, folks ran for office because they’re interested in public service, so they want to hear from you; reaching out isn’t an imposition at all. If people aren’t taking meetings you can still easily reach out through email.
Kim Humphrey – Community Connect: Community Connect Maine has electronic postcards that you can share with your local Legislators. Introduce yourself with a short personal message in an email to your local Legislator(s). Then, include in your email one of these electronic postcard links below. The electronic postcards provide an additional link to several organizational websites that support the I/DD community: Season's Greetings Electronic Postcard and These Are Our Stories Electronic Postcard You Can find more resources at CommunityConnectME.Org. We also have included ways in which you can look up your Legislators and contact them easily.
At 2:00pm, the Zoom meeting abruptly ended. Many people then rejoined the meeting, but more than half did not.
We apologize for this and will prevent it from happening in the future. Thank you for your understanding.
The next meeting will be on Monday, January 11, 2021, 12-2pm, via Zoom.
Featured Speaker: Frederick Murphy III, State & Federal Health Adviser, Market Place Insurance Agency, LLC.
Topic: An overview of Medicaid, Medicare, Medicare Advantage Plans (such as WellCare Maine),
including the differences between the various insurance options.
And, Laura Cordes, Executive Director, Maine Association for Community Service Providers (MACSP).
Topic: 130th Legislature – Legislative agenda and priorities for the system of care for people with ID/DD.
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].