Present: Chris Hastedt, Kate Brennan, Jenn Fales, Mary Chris Semrow, Laurie Raymond, Nonny Soifer, Jennifer Putnam, Samantha Laverdiere, Lori Poore, Julie Brennan, David Cowing, Jeff Jones, Mimi Edmunds, LaRene Wentworth, Amy Moller, Ian Porterfield, Sue Murphy, Lauren Wille, Kim Fletcher, Alli Vercoe, Brittany Young, Alisa Billharz, Jamie Whitehouse, Jerry Silbert, Ed & Suellen Doggett, Patrick Moore, Lydia Paquette, Kim Humphrey, Cullen Ryan, and Vickey Rand. Via Zoom – Bangor (UCPofME): Andrew Cassidy. Sanford (Waban): Morgan Jones. Brunswick (Independence Association): Ray Nagel and Colleen Gilliam. Auburn (John F. Murphy Homes): Ann Bentley and Darla Chafin. Winthrop (Autism Society of Maine): Cathy Dionne. Gardiner (Uplift): Charlene Kinnelly. Misc. sites: Stacey Lamontagne, and Romy Spitz (with interpreters).
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Thank you to Senscio Systems, who has very generously covered the cost of lunch for our 2017 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Featured speakers: Chris Hastedt, Public Policy Director, and Kate Brennan, Organizer/Outreach Coordinator, Maine Equal Justice Partners. www.mejp.org Topic: Update on the 128th Maine Legislature, advocacy efforts, and ways the Coalition can effect change.
Cullen: The Coalition began in 2006, and has been advocating for housing and quality services for people with intellectual/developmental disabilities since its inception. This year stood out, in terms of the legislative session and the Coalition’s immense advocacy efforts. The hard work and dedication of this Coalition has helped shape the system, so I want to thank you all. One of the initiatives that the Coalition advocated for was to enhance Section 29 to have it function like a mini Section 21 waiver. The Department implemented this change, but there was a cap of approximately 21 hours per week. The Governor’s proposed budget, and the final biennial budget that passed last week, included funding to double the Section 29 cap. This increase, which this Coalition has strongly supported for years, will allow Section 29 to be a more functional waiver for people like my son who just turned 21 and aged out of school. His mother and I should be able to maintain employment, while he will have some support to continue his movement from Special Education to Adult Services, to be safe at home, and actively engaged in employment and the community. Thank you all for helping to make that happen for my son and numerous others. This Coalition has also advocated for several bills during the legislative session, including LD 323, the bill to fund the Section 21 waitlist, and LD 967, the bill to increase Direct Support Professional (DSP) wages, which are both on the Special Appropriations Table (“the Table”) awaiting funding. The enacted budget includes some short-term funding to assist with DSP wages, but not to the extent requested in LD 967. We are collectively helping to shape the system with our advocacy; we’re all better for it.
Today we’re going to talk about the past legislative session, collective advocacy, and other ways in which we can share our stories. Our speakers are Chris Hastedt and Kate Brennan, from Maine Equal Justice Partners (MEJP). Chris is a constant fixture at the State House, and has worked for decades to effect positive change for vulnerable populations in Maine. She has a vast knowledge of issues that relate to poverty and services. She has fought for years to ensure that people in need have the resources they need and don’t get left behind. She is the most effective advocate I’ve ever seen. Kate is right in her footsteps with outreach and organization efforts; she has been to the Coalition before but I am very glad to have her back today. Chris and Kate will inform us about the Legislature and how our testimony helps. Thank you both for being here; it’s an honor.
Kate Brennan: Maine Equal Justice Partners (MEJP) started in 1996, when Congress passed legislation that prohibited Legal Services Corporation grantees, such as Pine Tree Legal Assistance, from representing low-income people in the Legislature, before administrative agencies, and in significant class action litigation. Maine Equal Justice was formed to continue these vital advocacy and litigation services. We have a legal team, litigation team, direct service team, and a policy team. I’m the Organizer/Outreach Coordinator, so I work with groups a lot like yours to engage people with lived experience in the work we’re doing to ensure people have a voice at the table. We try to make connections between what’s happening on the ground and have policy grow out of that.
Chris Hastedt: I want to thank you all. Cullen invited us here to talk about collective advocacy. When I think about the work you’ve accomplished we have very little to tell you! You’ve achieved some remarkable accomplishments this session, such as the doubling of the Section 29 cap. That’s remarkable and you did it by persuading the administration to implement that change. I watched the intense and remarkable work that went into achieving the increase for DSPs; it was an amazing ride. I had the opportunity to read all the testimony for LD 967, which included a balanced combination of parents and workers who are directly affected. This was some of the most powerful, moving testimony I’ve ever read. People were at the State House all day and night making that happen. The fact that the slight increase was only included for one of the next two years is another story, but that doesn’t diminish the remarkable success on that effort. As Cullen stated, there are bills on the Table to eliminate the Section 21 waitlist and increase DSP wages. The question is, with what money? This is the status of all bills on the Table. After the passage of the budget, there’s only about $7 million left, of a $7 billion biennial budget. It’s unlikely anything significant will be funded off the Table now; however, many bills will likely be carried over. Throughout the legislative session there was a realization that increasing DSP wages is fundamental to making the system work better. This opens the door to greater expansion in those waiver services as well. Everyone did an outstanding job in an incredibly difficult environment.
We want to talk a little about what we focused on in the last session. We’re feeling good about what was accomplished in terms of defeating a lot of cuts introduced in the Governor’s budget in January. We saw about 25 proposed cuts in major public assistance programs, such as General Assistance (GA), Temporary Assistance for Needy Families (TANF), Medicaid, and the Supplemental Nutrition Assistance Program (SNAP). Every one of those cuts were defeated. These would’ve substantially reduced eligibility for safety net programs relied upon by thousands. Kate’s going to talk a little about how those measures were defeated, through similar strategies this group has used. One of the great successes, was the passage of several of the key provisions of LD 1475, An Act to Reduce Child Poverty by Leveraging Investments in Families Today (LIFT). This bill was an attempt to deal with the growing deep child poverty in Maine. The LIFT bill increases the TANF benefit by 20%, substantially increases housing, and establishes a transportation program, among other achievements. This never would have occurred without the engagement of hundreds of people.
One aspect of the legislative session that is disconcerting, and is going to become our challenge moving forward, is the defeat of Question 2, which was a ballot measure approved by the voters to increase state educational funding to 55% and pay for it with a small sur-tax on high income earners. Half of that educational funding was adopted, but not the mechanism to pay for it. This will be huge moving forward; if we don’t fix this problem it’s going to take us back to pitting human services programs each other, and educational program against human services programs. That is a situation in which no one wins. We need to determine how to establish a sustainable source of revenue to pay for these programs into the future so the programs can be sustainable and we don’t have situations where vulnerable people are pitted against each other.
Discussion:
Kate: I want to start with your experience of collective advocacy. What does this group feel like has worked well? What tools and strategies have you used that have been effective in building this group to 4,000 people, and moving things at the in Augusta?
-The group stated that the following strategies are effective: Telling personal stories; detailing how families will be directly affected; sending pictures; involving of the press; developing a communication strategy; showing up in Augusta; developing relationships with legislators and various committee members; putting a face to the issue; building community; and connecting with people who otherwise may not participate.
Kate: Our process echoes what you have said. For instance, the LIFT bill grew out of the Equal Justice Partners Circle, which began with 20 people across the state who had direct experience living in poverty. We provided advocacy training, and started determining what our vision was, what we wanted, and worked backwards from there to determine how to achieve those goals. We decided to address the biggest barriers first because we knew we couldn’t tackle everything. The Circle developed priority areas which included child care, housing, and transportation. We brought these ideas to provider listening sessions in the fall and went through a similar visioning and decision making process around the priorities we put forward. Then, the policy team came together to brainstorm potential funding, crunch numbers, and figure out how we could make this happen. It was a beautiful process that included a partnership between affected people and people with policy expertise. Bringing together people with knowledge of the problem, people with policy expertise, and a lot of data was very helpful. Identifying and recruiting legislative leaders is key. We worked with the Speaker’s office, which had many benefits in terms of access and moving this piece of legislation through to the end. You can also find legislators who are steadfast and will work very hard to have your bill be their top piece of legislation. Building those relationships is key. Education and consciousness raising is important too – not just with the Legislature, but the public. Letters to the editor, advisory email blasts, press conferences, and deliberately seeking out coverage in the media are all effective strategies. To be most effective, the public needs to understand the issues and be behind you. This is where your Coalition, Community Connect, and connecting with other networks with common interests comes into play. Leadership development is important too. We all have busy lives, and we all have a role to play; it’s finding out what that small role is you can manage and helping others to find their roles as well. We can’t do it alone. Continuously building the group and the ownership of the group is essential. You can’t be an advocate 365 days a year so it’s important to have reinforcements who can step in and have the skills needed to be effective.
Having a rapid response plan is helpful as well. With the state government shutdown, we needed to have a good plan in place. We filed a lawsuit to make sure if a shutdown occurred, people would still be able to access services. This is another strategy we are lucky to have in our toolbox.
Chris: We ended up not having to go in front of a judge for the lawsuit because the Department relented and stated they would provide services in the event of a shutdown. This led to numerous other questions. We knew Medicaid, TANF, GA, and SNAP would have to be provided during a shutdown, but what other services had to provided was unclear.
-It was stated that people had difficult accessing, or could not access, Medicaid-funded services during the shutdown, such as Section 21 and Section 29 services.
Chris: Medicaid services had to be provided. If the shutdown had continued, we could have pressed issues such as these, through the courts if necessary. The decisions about what services would be provided in an emergency weren’t made until noon on Friday 6/30, twelve hours before the government shutdown. This caused enormous confusion and anxiety. Whether someone with a disability would still get services was not answered adequately. We hope this won’t happen again, but if it does, it makes sense to have a bigger conversation so the details like this get ironed out. This was a learning lesson for all of us. We need a more comprehensive strategy before we go to court, so we know everything being protected.
Kate: Another effective strategy for collective advocacy is having a presence at the State House. This could involve parents taking different shifts, or possibly having a friendly legislator who will keep you updated. Not everyone needs to stay at the Legislature until 2am, but checking in once a week or every two weeks is a good idea. Sharing stories is the single most powerful thing people can do. Even the most well-intentioned legislators can lose touch with the personal stories. Are there any other advocacy tools or strategies that this group uses or could use in the future?
-It was stated that having legislators come to Coalition meetings is eye-opening. It affords them the opportunity to hear personal stories first-hand and then spread the word with their colleagues.
Chris: Strong data and lived experiences is a powerful combination.
Lydia Paquette – Maine Association for Community Service Providers (MACSP): One of the things I struggle with is that we as a community get used to taking things on the chin and deaths by 5,000 paper cuts. How do you best balance and find time to speak up on something? We shouldn’t be storming the State House daily for every small thing because it loses its powerful effect. What are your thoughts on systemic advocacy?
Kate: I think that part of our calculation with LIFT was looking at the funding, policy initiatives, and what people needed. Identifying issues that are clearly key issues for people in the group is a great place to start.
Chris: There are moments of opportunity, and you can feel them. The LIFT bill never would have happened without a lot of different things, but the precipice was the Governor stashing a lot of money intended for vulnerable kids and not spending it; we worked to get that out to the press. That created an opportunity – illustrating what was happening to kids living in deep poverty. This convergence created an opportunity. Legislators come to us all the time with bills that aren’t well thought out, are too costly for consensus, and so on. You can’t do the remarkable job the Coalition did this session if you spread yourself too thin. You look for the opportunity. It’s a hard lesson to learn; I hate to say no! The more I learned about LD 967, the more passionately I felt about it; it was such an important piece of legislation and you had great advocacy behind it. You look at an issue and determine if that issue has strength. This group has strength, more so with some legislators than we do! I greatly admire your work.
Kate: You have been building this Coalition since 2006; you build your own strength and create your own opportunities.
-Some of the people in the group who worked on LD 967 stated that they were surprised about the assumption, from both parties, that they would find their own revenue to support the wage increases. At the end of the budget process, LD 967 became a political football and was used for talking points in the bigger picture. It was a tough experience. The result wasn’t as positive as was hoped. It was stated that frequently everything is dependent on what else is going on.
Chris: It isn’t surprising to me that they asked you to come up with the money, they do this to us all the time, but this is even more reason why all of us have an interest in finding sustainable revenue and having it be adopted by the Legislature next year. It becomes a function of who doesn’t get that money or is there a new revenue stream to hold everyone harmless.
Cullen: There were several action alerts that went out from this Coalition and others that had to do with the House’s American Health Care Act (AHCA) and the Senate’s Better Care Reconciliation Act (BCRA), and they were centered on Senator Collins. Senator King took a clear stand in his Senate floor speech on May 17th (click here for the video), but we weren’t hearing from Senator Collins. A lot of people reached out to her and let her know how important Medicaid is for people with intellectual/developmental disabilities in Maine. Instead of reforming Medicaid, these bills worked to dismantle the program established in 1965. Throughout the history of this country there was never a more opportune time for the government to put forth resources to serve people who were poor than in 1965 – the post-World War II era, when the baby-boomer generation hit, and the economy was not only strong, but record-setting. So, programs like Medicaid were enacted. If they are cut today, there is unlikely to be a time in our lifetime where that would be corrected. The AHCA and BCRA, both of which would drastically cut Medicaid, are very dangerous, because in Maine we don’t have the resources to pay for MaineCare; the state bills the federal government $2 for every $3 dollars spent. Maine doesn’t have any other funding mechanism to support populations such as people with intellectual/developmental disabilities. If this bill were to pass, we would see a drastic reduction in the amount of funding in MaineCare, and it would be felt quite dramatically – including affecting funding for services provided by Sections 21 and 29. The expected vote on the BCRA in the Senate didn’t occur before the July 4th recess, as was originally expected, but there appears to still be efforts underway to modify it to secure enough votes for passage. Senator Collins needs to keep hearing from us. It remains important to be vigilant; we have work to do still.
Chris: We have spoken frequently with people in Washington working with Congress to protect Medicaid. Senator Collins is being thanked for her efforts in opposing the BCRA, and she responds well to that. The Senate wasn’t able to secure enough votes so they never brought the BCRA to the floor for consideration. The thought is they may try to pass something before the August recess. Who knows. There’s so much at stake, we need to be eternally vigilant.
Similarly, the Maine Department of Health and Human Services is submitting a waiver application to CMS (Centers for Medicare and Medicaid Services), that would drastically affect eligibility for Medicaid and access to healthcare. The Department held two public hearings and a 30-day public comment period back in May. The state will summarize comments they received, prepare responses to the comments, and submit the formal application to CMS. Then, there will be another set of hearings and a comment period at the federal level.
Cullen: This is the 1115 Waiver application that has been discussed at previous meetings. This proposal would change eligibility for Medicaid services. What we’re talking about here is how this could translate to all the Medicaid chapters.
Chris: We’ll be organizing testimony for the comment period at the federal level. We’ll be in touch to let you know what comments/feedback the Department accepted, rejected, what the final proposal looks like, and have a bigger conversation about the points to make in the next round of testimony.
-It was stated that block granting or level funding of Medicaid, as with per capita caps, is problematic because the problems are increasing and will require increasing money over time.
Chris: That’s such a good point and reminds me that the great work you just did to double the Section 29 cap and get a wage increase for DSPs, wouldn’t be reflected in the per capita cap calculations because they will be based on 2016 figures.
Kate: We’re all looking to be proactive. We want more healthcare, not less. Medicaid expansion is on the ballot in Maine in November; we’re working with several groups to make that happen. Medicaid expansion would cover an additional 70,000 people, and would bring millions of dollars into the state, acting as an economic driver. We want to know how this would affect the communities and people with whom you work. We’re asking people across Maine to sign a pledge to vote for Medicaid expansion in November (click here to pledge support online). People from the campaign are going out across the state and asking organizations, providers, and coalitions to endorse the campaign. If you know of any group we should talk to, please let us know. November is not far away and there’s been a lot of uncertainty and questions about citizen’s initiatives after this past legislative session. Our federal delegation will be watching this.
Cullen: I want to thank you both for presenting today, but also for your tireless efforts– keep it up. Thank you, and well done!
End of presentation. (Round of applause)
Cullen: I wanted to ask this group if it would be willing to send thank you letters to Senator Collins and Senator King for opposing the BCRA. I would be willing to draft something and send it on behalf of the Coalition.
-There was a motion to send letters thanking Senator Collins and Senator King for opposing the BCRA. The motion was seconded and approved unanimously.
Featured speakers: Jennifer Fales, Initiatives and Clinical Review Program Manager of Developmental Services, DHHS-OADS. Topic: Review and discussion of draft proposed rule changes for Section 21.
Cullen: I want to take a moment to recognize Charlene Kinnelly and Peter Stuckey. Increasing the Section 29 cap was originally Charlene’s idea, and Peter Stuckey became invested immediately, sponsoring two different bills to do so. The bills were subsequently vetoed by the Governor, but it got the attention of the Office of Aging and Disability Services (OADS), which convinced the administration to increase the Section 29 cap. Inevitably, this provision was included in the Governor’s budget. I want to thank Autism Society of Maine, MACSP, Community Connect, Disability Rights Maine, (DRM), Maine Disability Alerts, and Disability Advocates and Allies of Maine (DAAM), all of whom worked tirelessly to disseminate information on this, and the other bills we have been tracking, and offering clear, concise ways people could take action. As we have discussed, LD 323, the bill to cure the Section 21 waitlist, was voted ought to pass unanimously in the House, passed the Senate, and yet it is sitting on the Table with no funds. This shows that you can have a vote with everyone in favor, but still not have the bill enacted due to insufficient funding. We still have work to do.
-It was stated that people had discussions with Representative Malaby, the bill sponsor for LD 323, around the waitlist. It will be critical moving forward to have a more comprehensive analysis of need, rather than simply relying on waitlist numbers.
Cullen: Jenn Fales is also here from OADS. I want to thank you and all of OADS for your work to make the increase to the Section 29 cap happen, and for being here today. It sounds like we’re looking at potential Section 21 proposed rule changes. We have made it clear that we are ready, willing, and have the strong desire to be at the table when you’re thinking of potential rule changes.
Jenn Fales: Thank you again for having me. I want to say how excited we are for the Section 29 increase. I’m in charge of broadening initiatives, so this is especially exciting for me. That being said, this will involve a waiver amendment to CMS and a rule change, which will hopefully be fast-tracked. I’m here to talk about the Section 21 waitlist and the priorities. Per the previous Commissioner’s request, we developed a small group to look at expanding the Section 21, Priority 1 language to allow for more Priority 1 offers, primarily to address aging caregivers. There are more than 500 people currently on the Priority 2 waitlist.
Waitlist Numbers as 7/10/17: Section 21 – 1550: Priority 1 – 0; Priority 2 – 539; Priority 3 – 1011. Section 29 – 0. (Please note that these are the same numbers reported at the June meeting and may not be current).
We drafted limited language (additional language only, language is not being removed), regarding the priority levels to allow people with caregivers who are aging, terminally ill, or who have changes in medical status to be to categorized as Priority 1. This will allow some people who have been lingering on the Priority 2 waitlist to be given Priority 1 offers. I don’t have the exact language in the proposal for you today, but this is a generalized summary. There is one caveat to this – it includes an annual recertification of interest for people on the waitlist. Currently, we’re not confirming interest in people remaining on the waitlist annually to ensure the people waiting are people who need the service and are being considered appropriately. With the proposed Priority 1 language in the Section 21 rules, reconsiderations would need to be submitted for people on the Priority 2 list to be considered for Priority 1.
Unfortunately, this proposed rule change is scheduled to be proposed tomorrow and released on Wednesday, 7/19, with a Public Hearing occurring at the Augusta Armory on 8/8. The proposed content of the rule changes was not released before officially being proposed; this was a decision made above me and I understand this group’s frustration about that. I’m here today because I wanted to give you the information that I can about what’s coming. Personally, I believe this is a very positive change. I hope you’ll look at it, comment, and give us feedback.
Additionally, the Section 29 cap being doubled may cure, or delay, some of the need for Section 21; people may not need or desire to remain on the Section 21 waitlist. Many people will still need to stay on the waitlist, but if there are other options people want to utilize and that can meet there needs we’ll have a better gauge of need. There is a group of approximately 150 people we have repeatedly been unsuccessful in contacting – letters have been returned to us, phones disconnected, people may have moved out of state, and so on. Recertification of intertest in the waitlist may help address this and be a way to keep contact lists updated.
-It was asked if there is a time limit for utilizing Section 29.
Jenn: There’s not a time limit on Section 29; if there is a need and funding is there people are given offers. We have heard from people that just a few more hours of Section 29 services would eliminate the need, or put off the need, for the more comprehensive Section 21 services. The addition of shared living in Section 29 is exciting as swell.
-It was stated that at a previous meeting OADS communicated clear restrictions regarding the doubling of the Section 29 cap; the additional funding available could only be used towards home supports or shared living situations. It was asked if there is still room to have a discussion around these restrictions to ensure Section 29 works well for people.
Jenn: I think there’s still room to talk about that. I would contact Emily Kalafarski ([email protected]), Acting Associate Director. My understanding from the forums was that you couldn’t use the entire cap for community supports. I believe there’s some flexibility for the combination of home and community supports. The Department is supportive of incentivizing employment, getting people meaningful jobs, and connections in the community.
Cullen: Members of this Coalition will read the proposed rules carefully, and offer thoughtful testimony and comments. Importantly, and we would’ve been willing to help you draft it. This goes for the waiver amendment and rule changes needed to implement the increase to Section 29. We all want to make the system work for our sons and daughters. We can help you. If you leave us out and at the end things don’t make sense, it becomes much a more convoluted and stressful process for all involved. Invite us in; we’re well-poised to assist.
Jenn: I hear you, and some of these decisions are not mine to make, but I will pass on all this feedback. Additionally, the questions and answers document from the community forums fell into approval limbo and we’re far behind in releasing it. We hope to have it posted soon.
Lydia: I want to echo Cullen’s remarks. Also, we’re heard informally about upcoming revisions to the Section 21 rules. Is what you’ve presented today the revision, or are there more revisions still to come?
Jenn: We’re always looking at Section 21 and Section 29 to see how we can best use the appropriated funds. Is there another rule pending to go behind this? Not that I’m aware of, apart from the changes needed to implement the increase to Section 29 that I spoke about earlier. I feel like we’re always closing one rule and opening another, and I’m sure you do as well. But, is there another storm coming? No, nothing that I’m aware of now.
Lydia: What about the upcoming APS (Adult Protective Services) regulation changes?
Jenn: I apologize but I have no knowledge of those, unfortunately.
Lydia: Is the Department looking at how people can apply for reserved capacity for Section 21?
Jenn: Much like the reconsideration process for the priorities, a consideration is done for reserved capacity. This is something we’re looking at. All Section 21 applications are considered for reserved capacity.
Lydia: This may affect waitlist numbers because many people don’t know it exists.
Jenn: With Emily moving into the Associate Director position, we need to fill the Waiver Manager position. Those two positions will work on streamlining waiver applications and reconsiderations. With this new rule, if people have been waiting on the Priority 2 list and want to be considered for Priority 1 based on the rule changes, they would need to ask for a reconsideration. This process needs to be streamlined and ironed out so people know what to do. Reserved capacity refers to a certain number of Section 21 slots that falls out of the prioritization process, reserved for specific situations such as adults coming back to Maine who were placed out of state, and people leaving institutional settings (hospitals, nursing homes, etc.). There are about three to four reserved capacity slots per month.
-It was asked what the timeframe is for the implementation of the Section 29 increase.
Jenn: No language has been drafted to my knowledge for Section 29. Meetings are scheduled this week to start those processes. Karen stated it may take several months. The waiver amendment usually takes about 6 months due to CMS’ process. Overall, I’d say we’re looking at 6-8 months at best.
Cullen: Is the Department allowing providers to increase Section 29 hours on case-by-case basis?
Jenn: I don’t think providers can do anything until the process has concluded.
-It was stated that if the waiver amendment is passed in the same quarter, it can be retroactive.
Jenn: The meetings scheduled this week are about that – determining prospective versus retrospective.
Cullen: With 1550 people on the waitlist, this appears to be the perfect situation to advocate for emergency rule-making. We stand ready to assist you to ensure this works well. It is critical to be quick in this effort.
Jenn: The Section 29 cap is within our rule. The emergency rule-making suggestion is a great idea and I’ll bring that back.
Lydia: Or an accommodation and allowance for specific needs on a case-by-case basis. This may be a way to make this work within the current rule structure.
-It was stated that many people haven’t seen offers go out since before Emily went out on leave; and now she’s in a new position.
Jenn: I believe Emily was working on offers last week, as well as a review of around 80 offers that had been made, but no action had occurred. Right now, she’s juggling both until the Waiver Manager position is filled.
Cullen: Thank you for being here and taking our feedback back to the Department. We’re here ready and willing to help.
Jenn: I appreciate you inviting me here; thank you.
End of presentation. (Round of applause)
Housing and Federal Funding Update:
Cullen: As I have reported at previous meetings, Congress passed an omnibus spending bill for FY 17, which funds the federal government through 9/30/2017. Word in Washington is that there will likely be at least a short-term Continuing Resolution for the beginning of FY 18. Due to this, and the caps imposed by the 2011 Budget Control Act which have not yet been lifted for FY 18, we are positioned to feel the full effect of sequestration. If the caps are not increased, we could be looking at $10-$15 billion in cuts to Non-Defense Discretionary programs, such as Section 8 and other HUD programs. We have more work to do and will need our delegation to continue to advocate for adequate funding for HUD and other federal programs – and they are well-poised to do so.
State Legislature Update:
Lydia Paquette, MACSP (Maine Association for Community Service Providers): Throughout this legislative session, being part of these different groups and coalitions, participating in awareness rallies, and witnessing people coming together, it really felt like a community uniting. This changed my perspective of community integration and it bettered my life to be part of that. I want to talk about the practical implications regarding what happened with LD 967. What we asked was to be put in the position we were in 10 years ago, for rates; this was not what we got. What we got was a chunk of money set aside to adjust the rates. The budget doesn’t specifically say how the Department will implement this adjustment, and it may take a long time to see the rates adjusted at all. There’s some concern about what those numbers will look like. What we received was less than half of what was requested in LD 967, and what was requested was just to get back to where we were in 2007. As far as we can tell, this will allow us to pay DSPs what will be minimum wage in January. This is less of an advancement, rather it’s preventing the imminent collapse of the system which would have happened in January with the implementation of a higher minimum wage. All we’ve done by this, even though it took a herculean effort, is ensure providers don’t shut down tomorrow. This is an ongoing fight; we’ll be in the exact same situation next year. We need to continue relying on each other heavily as the years go on. This feels like a big win, and connecting with each other in such a profound way was a big win; but the action alerts aren’t over, we’re still in dire circumstances.
Cullen: I would like to suggest that the Coalition send a letter of thanks to the Department for its work on increasing the Section 29 cap, and urging them to use the emergency rule-making process to implement the increase. This is a situation where we need the Department to move briskly and efficiently, working with us to get this done and fast.
-It was moved and seconded to send a letter to the Department. Discussion: Lydia and Nonny offered to help draft the letter. It was suggested that the letter be a sign-on letter, sent jointly from the Coalition, the Maine Developmental Services Oversight and Advisory Board, and MACSP. The motion passed unanimously.
Chris: I believe there is language in the enacted budget that gives the Department the authority to pursue emergency rule-making. I will look for this and pass along the information to his group. [After the meeting, Chris forwarded the language that permits the Department to use emergency rule-making, as well as information regarding when the rate increases are to take effect: “PART TTTT Sec. TTTT-1. Emergency rule-making authority; health and human services matters. The Department of Health and Human Services may adopt emergency rules under the Maine Revised Statutes, Title 5, sections 8054 and 8073 as necessary to implement those provisions of this Act over which the department has subject matter jurisdiction for which specific authority has not been provided in any other Part of this Act without the necessity of demonstrating that immediate adoption is necessary to avoid a threat to public health, safety or general welfare.” And “Sec. MMMMMMM-2. Immediate rate increases. No later than October 1, 2017, the Department of Health and Human Services shall increase reimbursement rates in accordance with this section.”]
Lydia: There was also a moratorium on rate cuts for Sections 13, 17, 28, and 65 for the next two years. Though, we haven’t heard anything from the Department about the rate increases that were suggested in the Burns study.
Disability Rights Maine (DRM) drme.org: Disability Pride Maine is on 8/4 from 12:00-2:00 PM, in Augusta. Click here for more information.
Other Business: The Auburn remote site will not be available in August. If other sites will not be available for the August meeting, please let Vickey know.
Cullen: Check out our website www.maineparentcoalition.org. You can find the title of any of our past presentations; Click the link, and you will go right to the minutes. There is also a forum on the Section 21 & 29 page on the website. You can log in and post questions/topics for other parents to answer. Additionally, the website can always use more pictures. Check out the recently updated Service Timeline. Our goal is to be an easily accessible information clearinghouse.
The next meeting will be on August 14, 2017.
Featured Speakers: Jenessa Grant, NH-ME LEND program and the University of Maine Center for Community Inclusion and Disability Studies. Topic: Review of updates to the Service Timeline.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court)
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Thank you to Senscio Systems, who has very generously covered the cost of lunch for our 2017 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
Featured speakers: Chris Hastedt, Public Policy Director, and Kate Brennan, Organizer/Outreach Coordinator, Maine Equal Justice Partners. www.mejp.org Topic: Update on the 128th Maine Legislature, advocacy efforts, and ways the Coalition can effect change.
Cullen: The Coalition began in 2006, and has been advocating for housing and quality services for people with intellectual/developmental disabilities since its inception. This year stood out, in terms of the legislative session and the Coalition’s immense advocacy efforts. The hard work and dedication of this Coalition has helped shape the system, so I want to thank you all. One of the initiatives that the Coalition advocated for was to enhance Section 29 to have it function like a mini Section 21 waiver. The Department implemented this change, but there was a cap of approximately 21 hours per week. The Governor’s proposed budget, and the final biennial budget that passed last week, included funding to double the Section 29 cap. This increase, which this Coalition has strongly supported for years, will allow Section 29 to be a more functional waiver for people like my son who just turned 21 and aged out of school. His mother and I should be able to maintain employment, while he will have some support to continue his movement from Special Education to Adult Services, to be safe at home, and actively engaged in employment and the community. Thank you all for helping to make that happen for my son and numerous others. This Coalition has also advocated for several bills during the legislative session, including LD 323, the bill to fund the Section 21 waitlist, and LD 967, the bill to increase Direct Support Professional (DSP) wages, which are both on the Special Appropriations Table (“the Table”) awaiting funding. The enacted budget includes some short-term funding to assist with DSP wages, but not to the extent requested in LD 967. We are collectively helping to shape the system with our advocacy; we’re all better for it.
Today we’re going to talk about the past legislative session, collective advocacy, and other ways in which we can share our stories. Our speakers are Chris Hastedt and Kate Brennan, from Maine Equal Justice Partners (MEJP). Chris is a constant fixture at the State House, and has worked for decades to effect positive change for vulnerable populations in Maine. She has a vast knowledge of issues that relate to poverty and services. She has fought for years to ensure that people in need have the resources they need and don’t get left behind. She is the most effective advocate I’ve ever seen. Kate is right in her footsteps with outreach and organization efforts; she has been to the Coalition before but I am very glad to have her back today. Chris and Kate will inform us about the Legislature and how our testimony helps. Thank you both for being here; it’s an honor.
Kate Brennan: Maine Equal Justice Partners (MEJP) started in 1996, when Congress passed legislation that prohibited Legal Services Corporation grantees, such as Pine Tree Legal Assistance, from representing low-income people in the Legislature, before administrative agencies, and in significant class action litigation. Maine Equal Justice was formed to continue these vital advocacy and litigation services. We have a legal team, litigation team, direct service team, and a policy team. I’m the Organizer/Outreach Coordinator, so I work with groups a lot like yours to engage people with lived experience in the work we’re doing to ensure people have a voice at the table. We try to make connections between what’s happening on the ground and have policy grow out of that.
Chris Hastedt: I want to thank you all. Cullen invited us here to talk about collective advocacy. When I think about the work you’ve accomplished we have very little to tell you! You’ve achieved some remarkable accomplishments this session, such as the doubling of the Section 29 cap. That’s remarkable and you did it by persuading the administration to implement that change. I watched the intense and remarkable work that went into achieving the increase for DSPs; it was an amazing ride. I had the opportunity to read all the testimony for LD 967, which included a balanced combination of parents and workers who are directly affected. This was some of the most powerful, moving testimony I’ve ever read. People were at the State House all day and night making that happen. The fact that the slight increase was only included for one of the next two years is another story, but that doesn’t diminish the remarkable success on that effort. As Cullen stated, there are bills on the Table to eliminate the Section 21 waitlist and increase DSP wages. The question is, with what money? This is the status of all bills on the Table. After the passage of the budget, there’s only about $7 million left, of a $7 billion biennial budget. It’s unlikely anything significant will be funded off the Table now; however, many bills will likely be carried over. Throughout the legislative session there was a realization that increasing DSP wages is fundamental to making the system work better. This opens the door to greater expansion in those waiver services as well. Everyone did an outstanding job in an incredibly difficult environment.
We want to talk a little about what we focused on in the last session. We’re feeling good about what was accomplished in terms of defeating a lot of cuts introduced in the Governor’s budget in January. We saw about 25 proposed cuts in major public assistance programs, such as General Assistance (GA), Temporary Assistance for Needy Families (TANF), Medicaid, and the Supplemental Nutrition Assistance Program (SNAP). Every one of those cuts were defeated. These would’ve substantially reduced eligibility for safety net programs relied upon by thousands. Kate’s going to talk a little about how those measures were defeated, through similar strategies this group has used. One of the great successes, was the passage of several of the key provisions of LD 1475, An Act to Reduce Child Poverty by Leveraging Investments in Families Today (LIFT). This bill was an attempt to deal with the growing deep child poverty in Maine. The LIFT bill increases the TANF benefit by 20%, substantially increases housing, and establishes a transportation program, among other achievements. This never would have occurred without the engagement of hundreds of people.
One aspect of the legislative session that is disconcerting, and is going to become our challenge moving forward, is the defeat of Question 2, which was a ballot measure approved by the voters to increase state educational funding to 55% and pay for it with a small sur-tax on high income earners. Half of that educational funding was adopted, but not the mechanism to pay for it. This will be huge moving forward; if we don’t fix this problem it’s going to take us back to pitting human services programs each other, and educational program against human services programs. That is a situation in which no one wins. We need to determine how to establish a sustainable source of revenue to pay for these programs into the future so the programs can be sustainable and we don’t have situations where vulnerable people are pitted against each other.
Discussion:
Kate: I want to start with your experience of collective advocacy. What does this group feel like has worked well? What tools and strategies have you used that have been effective in building this group to 4,000 people, and moving things at the in Augusta?
-The group stated that the following strategies are effective: Telling personal stories; detailing how families will be directly affected; sending pictures; involving of the press; developing a communication strategy; showing up in Augusta; developing relationships with legislators and various committee members; putting a face to the issue; building community; and connecting with people who otherwise may not participate.
Kate: Our process echoes what you have said. For instance, the LIFT bill grew out of the Equal Justice Partners Circle, which began with 20 people across the state who had direct experience living in poverty. We provided advocacy training, and started determining what our vision was, what we wanted, and worked backwards from there to determine how to achieve those goals. We decided to address the biggest barriers first because we knew we couldn’t tackle everything. The Circle developed priority areas which included child care, housing, and transportation. We brought these ideas to provider listening sessions in the fall and went through a similar visioning and decision making process around the priorities we put forward. Then, the policy team came together to brainstorm potential funding, crunch numbers, and figure out how we could make this happen. It was a beautiful process that included a partnership between affected people and people with policy expertise. Bringing together people with knowledge of the problem, people with policy expertise, and a lot of data was very helpful. Identifying and recruiting legislative leaders is key. We worked with the Speaker’s office, which had many benefits in terms of access and moving this piece of legislation through to the end. You can also find legislators who are steadfast and will work very hard to have your bill be their top piece of legislation. Building those relationships is key. Education and consciousness raising is important too – not just with the Legislature, but the public. Letters to the editor, advisory email blasts, press conferences, and deliberately seeking out coverage in the media are all effective strategies. To be most effective, the public needs to understand the issues and be behind you. This is where your Coalition, Community Connect, and connecting with other networks with common interests comes into play. Leadership development is important too. We all have busy lives, and we all have a role to play; it’s finding out what that small role is you can manage and helping others to find their roles as well. We can’t do it alone. Continuously building the group and the ownership of the group is essential. You can’t be an advocate 365 days a year so it’s important to have reinforcements who can step in and have the skills needed to be effective.
Having a rapid response plan is helpful as well. With the state government shutdown, we needed to have a good plan in place. We filed a lawsuit to make sure if a shutdown occurred, people would still be able to access services. This is another strategy we are lucky to have in our toolbox.
Chris: We ended up not having to go in front of a judge for the lawsuit because the Department relented and stated they would provide services in the event of a shutdown. This led to numerous other questions. We knew Medicaid, TANF, GA, and SNAP would have to be provided during a shutdown, but what other services had to provided was unclear.
-It was stated that people had difficult accessing, or could not access, Medicaid-funded services during the shutdown, such as Section 21 and Section 29 services.
Chris: Medicaid services had to be provided. If the shutdown had continued, we could have pressed issues such as these, through the courts if necessary. The decisions about what services would be provided in an emergency weren’t made until noon on Friday 6/30, twelve hours before the government shutdown. This caused enormous confusion and anxiety. Whether someone with a disability would still get services was not answered adequately. We hope this won’t happen again, but if it does, it makes sense to have a bigger conversation so the details like this get ironed out. This was a learning lesson for all of us. We need a more comprehensive strategy before we go to court, so we know everything being protected.
Kate: Another effective strategy for collective advocacy is having a presence at the State House. This could involve parents taking different shifts, or possibly having a friendly legislator who will keep you updated. Not everyone needs to stay at the Legislature until 2am, but checking in once a week or every two weeks is a good idea. Sharing stories is the single most powerful thing people can do. Even the most well-intentioned legislators can lose touch with the personal stories. Are there any other advocacy tools or strategies that this group uses or could use in the future?
-It was stated that having legislators come to Coalition meetings is eye-opening. It affords them the opportunity to hear personal stories first-hand and then spread the word with their colleagues.
Chris: Strong data and lived experiences is a powerful combination.
Lydia Paquette – Maine Association for Community Service Providers (MACSP): One of the things I struggle with is that we as a community get used to taking things on the chin and deaths by 5,000 paper cuts. How do you best balance and find time to speak up on something? We shouldn’t be storming the State House daily for every small thing because it loses its powerful effect. What are your thoughts on systemic advocacy?
Kate: I think that part of our calculation with LIFT was looking at the funding, policy initiatives, and what people needed. Identifying issues that are clearly key issues for people in the group is a great place to start.
Chris: There are moments of opportunity, and you can feel them. The LIFT bill never would have happened without a lot of different things, but the precipice was the Governor stashing a lot of money intended for vulnerable kids and not spending it; we worked to get that out to the press. That created an opportunity – illustrating what was happening to kids living in deep poverty. This convergence created an opportunity. Legislators come to us all the time with bills that aren’t well thought out, are too costly for consensus, and so on. You can’t do the remarkable job the Coalition did this session if you spread yourself too thin. You look for the opportunity. It’s a hard lesson to learn; I hate to say no! The more I learned about LD 967, the more passionately I felt about it; it was such an important piece of legislation and you had great advocacy behind it. You look at an issue and determine if that issue has strength. This group has strength, more so with some legislators than we do! I greatly admire your work.
Kate: You have been building this Coalition since 2006; you build your own strength and create your own opportunities.
-Some of the people in the group who worked on LD 967 stated that they were surprised about the assumption, from both parties, that they would find their own revenue to support the wage increases. At the end of the budget process, LD 967 became a political football and was used for talking points in the bigger picture. It was a tough experience. The result wasn’t as positive as was hoped. It was stated that frequently everything is dependent on what else is going on.
Chris: It isn’t surprising to me that they asked you to come up with the money, they do this to us all the time, but this is even more reason why all of us have an interest in finding sustainable revenue and having it be adopted by the Legislature next year. It becomes a function of who doesn’t get that money or is there a new revenue stream to hold everyone harmless.
Cullen: There were several action alerts that went out from this Coalition and others that had to do with the House’s American Health Care Act (AHCA) and the Senate’s Better Care Reconciliation Act (BCRA), and they were centered on Senator Collins. Senator King took a clear stand in his Senate floor speech on May 17th (click here for the video), but we weren’t hearing from Senator Collins. A lot of people reached out to her and let her know how important Medicaid is for people with intellectual/developmental disabilities in Maine. Instead of reforming Medicaid, these bills worked to dismantle the program established in 1965. Throughout the history of this country there was never a more opportune time for the government to put forth resources to serve people who were poor than in 1965 – the post-World War II era, when the baby-boomer generation hit, and the economy was not only strong, but record-setting. So, programs like Medicaid were enacted. If they are cut today, there is unlikely to be a time in our lifetime where that would be corrected. The AHCA and BCRA, both of which would drastically cut Medicaid, are very dangerous, because in Maine we don’t have the resources to pay for MaineCare; the state bills the federal government $2 for every $3 dollars spent. Maine doesn’t have any other funding mechanism to support populations such as people with intellectual/developmental disabilities. If this bill were to pass, we would see a drastic reduction in the amount of funding in MaineCare, and it would be felt quite dramatically – including affecting funding for services provided by Sections 21 and 29. The expected vote on the BCRA in the Senate didn’t occur before the July 4th recess, as was originally expected, but there appears to still be efforts underway to modify it to secure enough votes for passage. Senator Collins needs to keep hearing from us. It remains important to be vigilant; we have work to do still.
Chris: We have spoken frequently with people in Washington working with Congress to protect Medicaid. Senator Collins is being thanked for her efforts in opposing the BCRA, and she responds well to that. The Senate wasn’t able to secure enough votes so they never brought the BCRA to the floor for consideration. The thought is they may try to pass something before the August recess. Who knows. There’s so much at stake, we need to be eternally vigilant.
Similarly, the Maine Department of Health and Human Services is submitting a waiver application to CMS (Centers for Medicare and Medicaid Services), that would drastically affect eligibility for Medicaid and access to healthcare. The Department held two public hearings and a 30-day public comment period back in May. The state will summarize comments they received, prepare responses to the comments, and submit the formal application to CMS. Then, there will be another set of hearings and a comment period at the federal level.
Cullen: This is the 1115 Waiver application that has been discussed at previous meetings. This proposal would change eligibility for Medicaid services. What we’re talking about here is how this could translate to all the Medicaid chapters.
Chris: We’ll be organizing testimony for the comment period at the federal level. We’ll be in touch to let you know what comments/feedback the Department accepted, rejected, what the final proposal looks like, and have a bigger conversation about the points to make in the next round of testimony.
-It was stated that block granting or level funding of Medicaid, as with per capita caps, is problematic because the problems are increasing and will require increasing money over time.
Chris: That’s such a good point and reminds me that the great work you just did to double the Section 29 cap and get a wage increase for DSPs, wouldn’t be reflected in the per capita cap calculations because they will be based on 2016 figures.
Kate: We’re all looking to be proactive. We want more healthcare, not less. Medicaid expansion is on the ballot in Maine in November; we’re working with several groups to make that happen. Medicaid expansion would cover an additional 70,000 people, and would bring millions of dollars into the state, acting as an economic driver. We want to know how this would affect the communities and people with whom you work. We’re asking people across Maine to sign a pledge to vote for Medicaid expansion in November (click here to pledge support online). People from the campaign are going out across the state and asking organizations, providers, and coalitions to endorse the campaign. If you know of any group we should talk to, please let us know. November is not far away and there’s been a lot of uncertainty and questions about citizen’s initiatives after this past legislative session. Our federal delegation will be watching this.
Cullen: I want to thank you both for presenting today, but also for your tireless efforts– keep it up. Thank you, and well done!
End of presentation. (Round of applause)
Cullen: I wanted to ask this group if it would be willing to send thank you letters to Senator Collins and Senator King for opposing the BCRA. I would be willing to draft something and send it on behalf of the Coalition.
-There was a motion to send letters thanking Senator Collins and Senator King for opposing the BCRA. The motion was seconded and approved unanimously.
Featured speakers: Jennifer Fales, Initiatives and Clinical Review Program Manager of Developmental Services, DHHS-OADS. Topic: Review and discussion of draft proposed rule changes for Section 21.
Cullen: I want to take a moment to recognize Charlene Kinnelly and Peter Stuckey. Increasing the Section 29 cap was originally Charlene’s idea, and Peter Stuckey became invested immediately, sponsoring two different bills to do so. The bills were subsequently vetoed by the Governor, but it got the attention of the Office of Aging and Disability Services (OADS), which convinced the administration to increase the Section 29 cap. Inevitably, this provision was included in the Governor’s budget. I want to thank Autism Society of Maine, MACSP, Community Connect, Disability Rights Maine, (DRM), Maine Disability Alerts, and Disability Advocates and Allies of Maine (DAAM), all of whom worked tirelessly to disseminate information on this, and the other bills we have been tracking, and offering clear, concise ways people could take action. As we have discussed, LD 323, the bill to cure the Section 21 waitlist, was voted ought to pass unanimously in the House, passed the Senate, and yet it is sitting on the Table with no funds. This shows that you can have a vote with everyone in favor, but still not have the bill enacted due to insufficient funding. We still have work to do.
-It was stated that people had discussions with Representative Malaby, the bill sponsor for LD 323, around the waitlist. It will be critical moving forward to have a more comprehensive analysis of need, rather than simply relying on waitlist numbers.
Cullen: Jenn Fales is also here from OADS. I want to thank you and all of OADS for your work to make the increase to the Section 29 cap happen, and for being here today. It sounds like we’re looking at potential Section 21 proposed rule changes. We have made it clear that we are ready, willing, and have the strong desire to be at the table when you’re thinking of potential rule changes.
Jenn Fales: Thank you again for having me. I want to say how excited we are for the Section 29 increase. I’m in charge of broadening initiatives, so this is especially exciting for me. That being said, this will involve a waiver amendment to CMS and a rule change, which will hopefully be fast-tracked. I’m here to talk about the Section 21 waitlist and the priorities. Per the previous Commissioner’s request, we developed a small group to look at expanding the Section 21, Priority 1 language to allow for more Priority 1 offers, primarily to address aging caregivers. There are more than 500 people currently on the Priority 2 waitlist.
Waitlist Numbers as 7/10/17: Section 21 – 1550: Priority 1 – 0; Priority 2 – 539; Priority 3 – 1011. Section 29 – 0. (Please note that these are the same numbers reported at the June meeting and may not be current).
We drafted limited language (additional language only, language is not being removed), regarding the priority levels to allow people with caregivers who are aging, terminally ill, or who have changes in medical status to be to categorized as Priority 1. This will allow some people who have been lingering on the Priority 2 waitlist to be given Priority 1 offers. I don’t have the exact language in the proposal for you today, but this is a generalized summary. There is one caveat to this – it includes an annual recertification of interest for people on the waitlist. Currently, we’re not confirming interest in people remaining on the waitlist annually to ensure the people waiting are people who need the service and are being considered appropriately. With the proposed Priority 1 language in the Section 21 rules, reconsiderations would need to be submitted for people on the Priority 2 list to be considered for Priority 1.
Unfortunately, this proposed rule change is scheduled to be proposed tomorrow and released on Wednesday, 7/19, with a Public Hearing occurring at the Augusta Armory on 8/8. The proposed content of the rule changes was not released before officially being proposed; this was a decision made above me and I understand this group’s frustration about that. I’m here today because I wanted to give you the information that I can about what’s coming. Personally, I believe this is a very positive change. I hope you’ll look at it, comment, and give us feedback.
Additionally, the Section 29 cap being doubled may cure, or delay, some of the need for Section 21; people may not need or desire to remain on the Section 21 waitlist. Many people will still need to stay on the waitlist, but if there are other options people want to utilize and that can meet there needs we’ll have a better gauge of need. There is a group of approximately 150 people we have repeatedly been unsuccessful in contacting – letters have been returned to us, phones disconnected, people may have moved out of state, and so on. Recertification of intertest in the waitlist may help address this and be a way to keep contact lists updated.
-It was asked if there is a time limit for utilizing Section 29.
Jenn: There’s not a time limit on Section 29; if there is a need and funding is there people are given offers. We have heard from people that just a few more hours of Section 29 services would eliminate the need, or put off the need, for the more comprehensive Section 21 services. The addition of shared living in Section 29 is exciting as swell.
-It was stated that at a previous meeting OADS communicated clear restrictions regarding the doubling of the Section 29 cap; the additional funding available could only be used towards home supports or shared living situations. It was asked if there is still room to have a discussion around these restrictions to ensure Section 29 works well for people.
Jenn: I think there’s still room to talk about that. I would contact Emily Kalafarski ([email protected]), Acting Associate Director. My understanding from the forums was that you couldn’t use the entire cap for community supports. I believe there’s some flexibility for the combination of home and community supports. The Department is supportive of incentivizing employment, getting people meaningful jobs, and connections in the community.
Cullen: Members of this Coalition will read the proposed rules carefully, and offer thoughtful testimony and comments. Importantly, and we would’ve been willing to help you draft it. This goes for the waiver amendment and rule changes needed to implement the increase to Section 29. We all want to make the system work for our sons and daughters. We can help you. If you leave us out and at the end things don’t make sense, it becomes much a more convoluted and stressful process for all involved. Invite us in; we’re well-poised to assist.
Jenn: I hear you, and some of these decisions are not mine to make, but I will pass on all this feedback. Additionally, the questions and answers document from the community forums fell into approval limbo and we’re far behind in releasing it. We hope to have it posted soon.
Lydia: I want to echo Cullen’s remarks. Also, we’re heard informally about upcoming revisions to the Section 21 rules. Is what you’ve presented today the revision, or are there more revisions still to come?
Jenn: We’re always looking at Section 21 and Section 29 to see how we can best use the appropriated funds. Is there another rule pending to go behind this? Not that I’m aware of, apart from the changes needed to implement the increase to Section 29 that I spoke about earlier. I feel like we’re always closing one rule and opening another, and I’m sure you do as well. But, is there another storm coming? No, nothing that I’m aware of now.
Lydia: What about the upcoming APS (Adult Protective Services) regulation changes?
Jenn: I apologize but I have no knowledge of those, unfortunately.
Lydia: Is the Department looking at how people can apply for reserved capacity for Section 21?
Jenn: Much like the reconsideration process for the priorities, a consideration is done for reserved capacity. This is something we’re looking at. All Section 21 applications are considered for reserved capacity.
Lydia: This may affect waitlist numbers because many people don’t know it exists.
Jenn: With Emily moving into the Associate Director position, we need to fill the Waiver Manager position. Those two positions will work on streamlining waiver applications and reconsiderations. With this new rule, if people have been waiting on the Priority 2 list and want to be considered for Priority 1 based on the rule changes, they would need to ask for a reconsideration. This process needs to be streamlined and ironed out so people know what to do. Reserved capacity refers to a certain number of Section 21 slots that falls out of the prioritization process, reserved for specific situations such as adults coming back to Maine who were placed out of state, and people leaving institutional settings (hospitals, nursing homes, etc.). There are about three to four reserved capacity slots per month.
-It was asked what the timeframe is for the implementation of the Section 29 increase.
Jenn: No language has been drafted to my knowledge for Section 29. Meetings are scheduled this week to start those processes. Karen stated it may take several months. The waiver amendment usually takes about 6 months due to CMS’ process. Overall, I’d say we’re looking at 6-8 months at best.
Cullen: Is the Department allowing providers to increase Section 29 hours on case-by-case basis?
Jenn: I don’t think providers can do anything until the process has concluded.
-It was stated that if the waiver amendment is passed in the same quarter, it can be retroactive.
Jenn: The meetings scheduled this week are about that – determining prospective versus retrospective.
Cullen: With 1550 people on the waitlist, this appears to be the perfect situation to advocate for emergency rule-making. We stand ready to assist you to ensure this works well. It is critical to be quick in this effort.
Jenn: The Section 29 cap is within our rule. The emergency rule-making suggestion is a great idea and I’ll bring that back.
Lydia: Or an accommodation and allowance for specific needs on a case-by-case basis. This may be a way to make this work within the current rule structure.
-It was stated that many people haven’t seen offers go out since before Emily went out on leave; and now she’s in a new position.
Jenn: I believe Emily was working on offers last week, as well as a review of around 80 offers that had been made, but no action had occurred. Right now, she’s juggling both until the Waiver Manager position is filled.
Cullen: Thank you for being here and taking our feedback back to the Department. We’re here ready and willing to help.
Jenn: I appreciate you inviting me here; thank you.
End of presentation. (Round of applause)
Housing and Federal Funding Update:
Cullen: As I have reported at previous meetings, Congress passed an omnibus spending bill for FY 17, which funds the federal government through 9/30/2017. Word in Washington is that there will likely be at least a short-term Continuing Resolution for the beginning of FY 18. Due to this, and the caps imposed by the 2011 Budget Control Act which have not yet been lifted for FY 18, we are positioned to feel the full effect of sequestration. If the caps are not increased, we could be looking at $10-$15 billion in cuts to Non-Defense Discretionary programs, such as Section 8 and other HUD programs. We have more work to do and will need our delegation to continue to advocate for adequate funding for HUD and other federal programs – and they are well-poised to do so.
State Legislature Update:
Lydia Paquette, MACSP (Maine Association for Community Service Providers): Throughout this legislative session, being part of these different groups and coalitions, participating in awareness rallies, and witnessing people coming together, it really felt like a community uniting. This changed my perspective of community integration and it bettered my life to be part of that. I want to talk about the practical implications regarding what happened with LD 967. What we asked was to be put in the position we were in 10 years ago, for rates; this was not what we got. What we got was a chunk of money set aside to adjust the rates. The budget doesn’t specifically say how the Department will implement this adjustment, and it may take a long time to see the rates adjusted at all. There’s some concern about what those numbers will look like. What we received was less than half of what was requested in LD 967, and what was requested was just to get back to where we were in 2007. As far as we can tell, this will allow us to pay DSPs what will be minimum wage in January. This is less of an advancement, rather it’s preventing the imminent collapse of the system which would have happened in January with the implementation of a higher minimum wage. All we’ve done by this, even though it took a herculean effort, is ensure providers don’t shut down tomorrow. This is an ongoing fight; we’ll be in the exact same situation next year. We need to continue relying on each other heavily as the years go on. This feels like a big win, and connecting with each other in such a profound way was a big win; but the action alerts aren’t over, we’re still in dire circumstances.
Cullen: I would like to suggest that the Coalition send a letter of thanks to the Department for its work on increasing the Section 29 cap, and urging them to use the emergency rule-making process to implement the increase. This is a situation where we need the Department to move briskly and efficiently, working with us to get this done and fast.
-It was moved and seconded to send a letter to the Department. Discussion: Lydia and Nonny offered to help draft the letter. It was suggested that the letter be a sign-on letter, sent jointly from the Coalition, the Maine Developmental Services Oversight and Advisory Board, and MACSP. The motion passed unanimously.
Chris: I believe there is language in the enacted budget that gives the Department the authority to pursue emergency rule-making. I will look for this and pass along the information to his group. [After the meeting, Chris forwarded the language that permits the Department to use emergency rule-making, as well as information regarding when the rate increases are to take effect: “PART TTTT Sec. TTTT-1. Emergency rule-making authority; health and human services matters. The Department of Health and Human Services may adopt emergency rules under the Maine Revised Statutes, Title 5, sections 8054 and 8073 as necessary to implement those provisions of this Act over which the department has subject matter jurisdiction for which specific authority has not been provided in any other Part of this Act without the necessity of demonstrating that immediate adoption is necessary to avoid a threat to public health, safety or general welfare.” And “Sec. MMMMMMM-2. Immediate rate increases. No later than October 1, 2017, the Department of Health and Human Services shall increase reimbursement rates in accordance with this section.”]
Lydia: There was also a moratorium on rate cuts for Sections 13, 17, 28, and 65 for the next two years. Though, we haven’t heard anything from the Department about the rate increases that were suggested in the Burns study.
Disability Rights Maine (DRM) drme.org: Disability Pride Maine is on 8/4 from 12:00-2:00 PM, in Augusta. Click here for more information.
Other Business: The Auburn remote site will not be available in August. If other sites will not be available for the August meeting, please let Vickey know.
Cullen: Check out our website www.maineparentcoalition.org. You can find the title of any of our past presentations; Click the link, and you will go right to the minutes. There is also a forum on the Section 21 & 29 page on the website. You can log in and post questions/topics for other parents to answer. Additionally, the website can always use more pictures. Check out the recently updated Service Timeline. Our goal is to be an easily accessible information clearinghouse.
The next meeting will be on August 14, 2017.
Featured Speakers: Jenessa Grant, NH-ME LEND program and the University of Maine Center for Community Inclusion and Disability Studies. Topic: Review of updates to the Service Timeline.
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)