October 15, 2018
Minutes
Minutes
Present: Robert Carpenter, Lydia Dawson, Mark Kemmerle, David Cowing, Debbie Dionne, Kim Humphrey, Jennifer Grant, Scott Rollins, Peter Stuckey, Henry Beck, Erin Rowan, Margaret Cardoza, Kathy Adams, Betsy Mahoney, Abby Tanguay, Foxfire Buck, Zak Ringelstein, Kiernan Majerus-Collins, Jared Golden, John Thayer, Cullen Ryan, Vickey Rand, and a number of other attendees who did not sign the attendance list and had to leave before the conclusion of the meeting. Via Zoom – (Bangor): Andrew Cassidy, Gayla Dwyer, and Renne Doble. (Sanford): Brenda Smith. (Winthrop): Cathy Dionne, and an advocate. (Auburn): Darla Chafin and Ann Bentley. (Kennebunk): Bryan Gordon. Misc. sites: Stacy Lamontagne.
The meeting was temporarily put on hold, and subsequently began late, to address an accommodation request. When a way in which the accommodation could be made was agreed upon and put in place the meeting resumed.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
During introductions two candidates in attendance addressed the group:
Jared Golden (democratic candidate for the US House of Representatives, Maine's 2nd Congressional District): Hi I’m Jared Golden. I want to thank you for the opportunity to come listen in and hear about these issues, particularly as they pertain to transportation – an issue that I am very passionate about and recognize that we need more policies that help individuals with disabilities. This is something I learned about up close and personal in the State House due to one of my colleagues who has a son with an intellectual disability. He’s actually going through a transition right, now where he’s going to college. Their family is learning and dealing with some of these issues first hand as they’re transitioning him out of the home and into a more independent setting, dealing with housing issues and transportation issues. I’m very interested to follow along and hope to be a Congressman who will ensure that families like yours have a seat at every table.
Zak Ringelstein (democratic candidate for the US Senate): Hi everyone I’m Zak Ringelstein and I’m the democratic candidate for Senate. I’m a dad who’s spent his whole career fighting for people with developmental and intellectual disabilities. My career as a public school teacher as given me first-hand experience. I’ve seen that the people who need a voice the most are not at the table in Washington. I’ll do everything I can to fight for your causes. I want to be on your team to make sure every child and adult living in the state has just as much an opportunity as anyone else. So, thank you for having me; I’m looking forward to learning a lot today.
Featured Speaker: Scott Rollins, Assistant Director, and Jennifer Grant, Policy Development Specialist, Maine Department of Transportation, Bureau of Planning. www.maine.gov/mdot Topic: Maine’s Long-Range Transportation Plan 2050.
Cullen: When we held the Maine Developmental Services Oversight and Advisory Board (OAB) forums here in June and July, transportation appeared to be a topic of concern for folks. We’ll be able to discuss that at length today with our two speakers from Maine’s Department of Transportation (DOT). We also have some candidates and representatives for candidates in attendance today. This will be a good opportunity for you to provide feedback to candidates and inform them about what is and is not working for you and your family. Jennifer and Scott, thank you both for being here today, it’s wonderful to have you.
Scott Rollins: My name is Scott Rollins and I’m the Assistant Director of the Maine Department of Transportation, Bureau of Planning. We’re here today because we want to talk about the different trends regarding transportation, issues people may have, and look at strategies to address them. We have a survey which is available on our website, and we’re passing around a flyer with information about the survey as well. We want to find out what people’s concerns are regarding transportation. We want to look forward – look to the future. We’ve talked to various groups; a few weeks ago, we were at the Wisdom Summit put on by the Maine Council on Aging. The best information comes from simply talking with people. After the presentation we can answer questions and speak to any concerns.
Jennifer Grant: Thank you for the opportunity to speak with you today and get your input and feedback on this very important topic.
Begin Presentation (Click here to view the presentation):
Jennifer: The survey is a good opportunity to provide your personal input on what we’ve discussed today, and we’re looking at that on a regular basis and including it in our plan. The survey allows you to rank the different trends we’ve discussed based on what you think is most important, and which strategies you think are most important to help with those trends. It also looks at different trade-offs – resources are not infinite, so if we invest in certain things we can’t invest in others. We’re looking to get a feel for what people think are the priorities in which we should invest – this is your opportunity to inform that. You can get more information on our long-range plan and our efforts on our website. We want to address any questions you have and listen to your feedback, so please do not hesitate to get in touch with us.
Cullen: Thank you. Does anyone in the group have feedback on the plan and how transportation is working?
Lydia Dawson (MACSP): Non-emergency transportation provided through OMS (Office of MaineCare Services) is the primary mode of transportation people receiving developmental services utilize because it’s free and gives them access to support services. Everything you’ve presented is exciting. I think our hope is that some of that interest in feedback and accessibility would be applied in the non-emergency transportation program. Have you been approached by OMS, or would you be interested in some kind of collaboration to bring this model there?
Scott: I believe some of our staff are working with them, though they are their own separate entity. We’re working on the whole idea of getting people to where they need to be and getting people to the transit system if they are in rural areas. Volunteer networks appears to be an effective way to solve that. One of the things our Commissioner has said is that he wants us to assist those volunteer networks. Our Department builds things, and this is a way to get people access so they can use them.
Peter Stuckey: I will raise the same issue – Maine did a pretty good job for several decades collaborating specifically in more rural areas and sharing resources from different funding streams. A while back that started to become problematic and was bifurcated. As I was looking at that I was trying to figure out whether the DOT has an opportunity to be a policy leader in the area of transportation systems. I think historically you’ve tended more to be the boots on the ground – you create and maintain the infrastructure. The larger question of what kind of infrastructure we should have doesn’t seem to have a leader at this point. I haven’t seen a public forum where those ideas and people’s needs have been discussed and integrated into the planning for that infrastructure design. Do you see going forward that is a role the DOT could play?
Scott: Yes, that’s what our Commissioner has said we ought to do – to look at how people access and use the system.
Peter: There are some challenges. The planning discusses urban areas a lot. The greater challenge is to not abandon the more rural areas.
Scott: Exactly. DOT funding is more devoted to urban areas. That’s the issue – how do you get those people in rural areas to where they want to go? The long-range plan is looking at how people utilize transportation. How do we get people from point a to point b, to places where they want to go? Different funding streams can only go to their dedicated projects. In the planning realm it’s important to look at what the consumer wants and needs.
Peter: Groups like this would be interested in collaboration, concluding with a more focused plan and the resources to support it. It needs to be looked at through one lens.
Scott: We want to have a safe and efficient transportation system given the resources we have. Sometimes resources are less than we need, so we need to be most efficient and effective with them.
-A parent stated that his daughter needs to be supervised on public transportation. He stated that it’s shocking Maine didn’t want to provide attendants, and that he had to go to an administrative hearing to get an assistant for his daughter. He stated he believes his daughter is one of the only people in the state, possibly the only person, with an attendant. It was asked if this is a DHHS issue.
Scott: Yes, that would be in DHHS’ realm.
-It was stated that the best contacts with community knowledge in rural areas would be the road rangers, who assist rural roads that aren’t under town jurisdiction. It was stated that there are many external factors that are barriers for volunteers, including low mileage reimbursement and burnout.
-A parent stated that given the aging population in Maine, and people dealing with various challenges and disabilities, taking into account their needs is important. He stated that it stands to reason that if someone requires assistance in their living situation that they would also need assistance with transportation. It was asked if any thought had been given to this, and if any promising ideas have emerged.
Scott: That’s tough and tough for us. We’re looking at the system and a way to access it. That’s probably more in DHHS’ arena.
-It was stated that it seems like this is a discussion that ought to occur between the actual transportation mode and the system who supports the people who need assistance. It was asked if there is someone who focuses on that in the DOT.
Scott: We’ve assigned someone to be a Mobility Manager – she will be leading that charge, looking at volunteer networks, and looking at how we get people from point a to point b. This is a new duty added to an existing position.
-It was asked in what ways the Mobility Manager will be leading the change and what the work will entail.
Scott: It is a half-time position working with rural transit providers. The position will also work with those volunteers and work to establish a system. This is a minor portion of what we have been doing. At a large mobility meeting our Commissioner made that promise. It’s one aspect of what we do. We will do whatever we can with our resources and staff. Those issues identified for volunteers are known to us, and that might be some of the incentives with which we can help.
Lydia: We do have non-emergency transportation for people accessing medical supports. A problem we come up against over and over is that transportation is a large barrier for employment opportunities. As long as it’s medically-supported employment, the person has access to transportation. However, when someone advances in their employment, where they no longer need support to do the job, they lose access to that transportation. There are a lot of system flaws regarding supporting people with disabilities, this is just another area in which we can all work together. We need to create new opportunities for transportation, so people aren’t relying on medical supports to get to their employment.
Scott: The problems Maine is having with a lack of labor is included in the survey. We’re looking at strategies to address that, including whether the employers themselves could provide transportation.
Lydia: We have a whole pool of people who would love to work, if we could get past these barriers it would really help.
Scott: These volunteer networks aren’t just for medical appointments, they could be utilized for transportation to and from employment.
-It was stated that there is an ITN (Independent Transportation Network) in the Portland area. This is a volunteer driver system, and a great model for a rural state like Maine. A member of the group stated that when her mother could no longer drive she donated her car and it became part of that driver network, which she then utilized for transportation.
-It was stated that OADS just did a round of public forums in September, which included feedback directly from families of people with disabilities, in which transportation came up frequently. Derek Fales ran those forums and could be a resource for information regarding input received.
Cullen: When we held the OAB forums here this summer, there was a lot of discussion about transportation, which is captured in detail in the minutes from those meetings, and could be beneficial to your planning efforts. (Click here for the minutes from part one of the OAB forum; click here for the minutes from part two of the OAB forum).
Jennifer: If you think of any other feedback after the meeting please contact us. There is a contact form on our website which will send an email to me.
Cullen: Thank you for being here today and telling us what’s going on, listening to us about what could make the system better, and having a survey methodology to gather input in an inclusive manner. This is a Coalition designed to create a world that’s more inclusive for everyone. It strikes me that’s what you’re trying to do as well. Thank you again!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads and the Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: It doesn’t appear that we have anyone from DHHS present today. [There was no one in the room from DHHS, or at the remote sites]. Last month we had representation from DHHS and OCFS (though not OADS), and their attendance is very helpful. It’s important to have DHHS around the table, as they are the ones best fit to answer questions regarding services and the system of care. I hope that they can attend future meetings.
State Legislature Update:
Lydia Dawson – Maine Association for Community Service Providers (MACSP): I brought a few handouts. Speaking of transportation – one of the things that people have voiced concerns about is how to properly file a complaint with non-emergency transportation. When people call they get a lot of “thank you for your input,” but it’s not registered as a complaint. The regulations state that there can only be a certain number of complaints before it becomes a contractual problem for the broker. We have a template of what a complaint could look like, so it’s clear that you’re filing a complaint. (Click here for the broker complaint template). If we start filing complaints in this manner, then we in the community can better track them; we can go back and see if there was a problem communicating those complaints. The percentage of complaints a broker can receive before it becomes a contractual issue I believe is 1% of the eligible population for MaineCare for that region/county, and we’ve consistently come nowhere close to that number despite having so many problems.
-It was asked if the state publishes that data, so that the group can figure out what that 1% would be.
Lydia: I think we could find that information because the Department has presented information to the Legislature about the population they serve.
Cullen: We will attempt to get this data and put it on our website.
Lydia: The best we can do is work to track this better as a community. Using the template to ensure that complaints are filed as actual complaints is one way in which we can do that.
-It was asked if this form would work for provider complaints as well.
Lydia: This is a broker complaint form. What you could do is cross out “broker complaint” and say grievance instead, cross out the language citing the regulation, and use it the same way for providers. A complaint about a provider is technically a grievance.
-It was asked what would happen if complaints exceed 1%.
Lydia: It would be a violation of the broker contract, the Department would have to take notice, and adjust the contract or find a new broker. It would be something reasonable to look at. I’m hearing reports from people being told “there’s no process to file a complaint,” “this is not a real complaint because we’ll fix it for you,” or “you can’t complain more than once.” All of these things are factually inaccurate. This is where working collectively and using the template for a complaint is helpful.
Lydia: At the last meeting there was a request to put rule change information and updates into plain language. I’ve attempted to do that with a one-page handout. (Click here for Lydia’s information on rule changes). Regulations are very hard to put into plain language. If anyone has a service that puts things into plain language, please let me know.
Cullen: The proposed rule changes to Section 21 and 29 would make permanent the increase to the rates for home, work, and community supports, which is wonderful. Is there anything else within the rule about which we should know? Are there any concerns from your perspective?
Lydia: One of the great things about public feedback is you don’t have to take a position either for or against. The comments from MASCP will include thanking them for the rate increase for DSPs, but also asking how we’re going to maintain this rate system moving forward, taking into account cost of living increases, increases to minimum wage, etc. The rate increase puts the wage above minimum wage, but it’s just going to fall under again in the next couple years. We need a better system for keeping up with this. We are also going to offer that this may not be the right system for reimbursing. Perhaps we should look at reforming the system if we’re constantly facing a problem getting DSP pay above minimum wage.
Regarding the creation of psychiatric residential treatment facilities for children, MACSP commented that this model does not include access to community supports – creating an institution doesn’t take care of the fact that a less-restrictive system could work. In the Department’s response to these comments they stated that they could address both – that the creation of a psychiatric residential treatment facility for children doesn’t preclude addressing community supports and inclusion.
Cullen: Regarding the Section 21 and 29 rule changes currently out for public comment (with comments due
by 10/20 in writing to [email protected]) – when the Department is seeking public comment we often send action alerts to the Coalition to inform people of the proposed changes, and the opportunity to provide feedback. Would you be willing to help us construct an action alert regarding this?
Lydia: Absolutely. I can also share MACSP’s comments.
I’ve also brought information detailing why MACSP is against Question One. (Click here for Lydia’s handout with information regarding Question One). The biggest issue to highlight is this creates $200 million in tax funding, which would be put into a brand-new healthcare system available to any person regardless of income or Maine residency. However, this would have no federal match. If we took that money and put it into our existing system, we could eliminate the waitlist for adult services and children’s services because it would be eligible for more than $600 million in federal match. We believe everyone should have healthcare, but we also believe in federal matching rather than relying exclusively on state funding. Importantly, Question One violates the privacy of Maine people and direct care workers by directing the release of their contact information to its board and anyone who can provide 250 signatures requesting it. This may violate HIPAA (Health Insurance Portability and Accountability Act). The people who wrote this referendum didn’t reach out to the disability community for input, and subsequently the results appear very flawed.
Cullen: Thank you for this information, Lydia, it’s very helpful. This is a very complicated referendum question, the flaws of which are not overtly apparent to the general public without this insight.
Peter: Those of us who are aspiring to have a universal, single-payer healthcare system where everyone gets health care, our challenge has been the Medicare system which supports the people who are the enemies of a single-payer system. Question One sounds like it has some problems. I’d be very surprised if we ever got it all in one fell swoop. Is this the shot across the bow that gets us closer to real discussion about a single-payer system? Until we commit to it, it won’t happen. I’m still up in the air, but this seems like it’s coming from people who are trying to move us in that direction.
Lydia: I think one of the things that this gets confused with is Medicaid expansion. This is not Medicaid expansion – this is the creation of a brand-new health care system that only functions if it supplements the other systems. It appears to create a new bureaucracy. One of the problems with Medicaid and Medicare is they both say, “who pays first?” With a third bureaucracy, they could both see themselves as the payer of last resort. Question One also has a whole section devoted to how to create waitlists. It directs its board to “curtail services” and “restrict the total amount of services to eligible persons” when the funds run out, creating more waitlists without matched funding. We all agree that people should have access to these services, but a third system will likely make matters worse. I have no idea why no one was consulted on this. The people behind Question One appear to be well-meaning people who were not connected to the community and stakeholders who could better inform them.
-It was stated that it seems like this could be a momentum-zapper, because it sounds great, so people may vote for it, only to then realize it’s poorly designed, and subsequently the enthusiasm for single-payer could wane. It was stated that people uninformed about single-payer should look at other countries that have single-payer systems and the many benefits they provide.
Disability Rights Maine (DRM) - drme.org
Foxfire Buck: OCFS is hosting town halls to get people’s input on Children’s Behavioral Health Services (click here for more information). We want everyone’s input on this so I encourage people to go to these town halls. Also, DRM is hosting voting fairs; a voting fair is occurring in Hampden on 10/18, Brunswick on 10/22, and Houlton on 11/2.
Other Business:
Cullen: Before we conclude, I wanted to highlight the work that Erin Rowan has done to get candidates and/or their staff to attend today’s meeting. I hope that this has provided an opportunity for them to hear from us and learn about issues about which we care, affecting the people about whom we care. Erin has also worked with others to create a candidate questionnaire, which includes a variety of questions pertaining to issues this group has been following. Those questions have been answered by a number of candidates. Vickey has collected all of that information on the Coalition’s website so folks can access that. (Click here for the candidate questionnaire with responses from gubernatorial candidates and candidates for Congress; click here for the questionnaire with responses from candidates for the state Legislature).
Erin: We have one staffer for a candidate who is still with us, and if there is time it might be beneficial to hear from him.
Henry Beck: I am here today on behalf of Janet Mills. I want to thank Ms. Rowan for putting together the questionnaire. We took a fair amount of time answering every question in a comprehensive way. Janet Mills knows and loves people with disabilities. In three weeks a lot of these questions are on the line.
Erin: Janet Mills is the only gubernatorial candidate to respond to the survey. She even responded during the primaries, and then updated her responses further.
Cullen: I want to thank you, Erin, for the immense amount of work you’ve put in to help candidates contemplate issues affecting people with intellectual/developmental disabilities while they’re campaigning. (Round of applause).
Erin: We partnered with Community Connect and members of the Coalition too!
Cullen: I want to thank our speakers, Jennifer and Scott. I hope the discussion today sparked a dialogue which will continue. I want to thank Foxfire for capturing all of today’s discussion and typing it all into the Zoom chat box. I want to thank the candidates for being here. It’s great to have folks who will be making decisions in the room with us. Please continue to invite decision-makers here, including DHHS staff – this is everyone’s Coalition. I also want to thank the person who let us know about accommodation needs. We want this to be inclusive; that’s what we are working toward for everyone. We will put in place something with our meeting announcement that is very clear for people who have reasonable accommodations requests, so we can be prepared to provide those accommodations for folks.
The next meeting will be on **November 19, 2018**
**Please note this is the third Monday of the month due to the holiday on our regular meeting date**
12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland. Featured Speakers and Topic TBD.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
Burton Fisher Community Meeting Room, 1st Floor of One City Center in Portland (off of the food court).
The meeting was temporarily put on hold, and subsequently began late, to address an accommodation request. When a way in which the accommodation could be made was agreed upon and put in place the meeting resumed.
Cullen Ryan introduced himself and welcomed the group. Participants introduced themselves. Minutes from the last meeting were accepted.
Cullen thanked Senscio Systems, noting that they have very generously covered the cost of lunch for our 2018 meetings! For more information on Senscio Systems you can visit their website, or connect with them on Facebook and Twitter.
During introductions two candidates in attendance addressed the group:
Jared Golden (democratic candidate for the US House of Representatives, Maine's 2nd Congressional District): Hi I’m Jared Golden. I want to thank you for the opportunity to come listen in and hear about these issues, particularly as they pertain to transportation – an issue that I am very passionate about and recognize that we need more policies that help individuals with disabilities. This is something I learned about up close and personal in the State House due to one of my colleagues who has a son with an intellectual disability. He’s actually going through a transition right, now where he’s going to college. Their family is learning and dealing with some of these issues first hand as they’re transitioning him out of the home and into a more independent setting, dealing with housing issues and transportation issues. I’m very interested to follow along and hope to be a Congressman who will ensure that families like yours have a seat at every table.
Zak Ringelstein (democratic candidate for the US Senate): Hi everyone I’m Zak Ringelstein and I’m the democratic candidate for Senate. I’m a dad who’s spent his whole career fighting for people with developmental and intellectual disabilities. My career as a public school teacher as given me first-hand experience. I’ve seen that the people who need a voice the most are not at the table in Washington. I’ll do everything I can to fight for your causes. I want to be on your team to make sure every child and adult living in the state has just as much an opportunity as anyone else. So, thank you for having me; I’m looking forward to learning a lot today.
Featured Speaker: Scott Rollins, Assistant Director, and Jennifer Grant, Policy Development Specialist, Maine Department of Transportation, Bureau of Planning. www.maine.gov/mdot Topic: Maine’s Long-Range Transportation Plan 2050.
Cullen: When we held the Maine Developmental Services Oversight and Advisory Board (OAB) forums here in June and July, transportation appeared to be a topic of concern for folks. We’ll be able to discuss that at length today with our two speakers from Maine’s Department of Transportation (DOT). We also have some candidates and representatives for candidates in attendance today. This will be a good opportunity for you to provide feedback to candidates and inform them about what is and is not working for you and your family. Jennifer and Scott, thank you both for being here today, it’s wonderful to have you.
Scott Rollins: My name is Scott Rollins and I’m the Assistant Director of the Maine Department of Transportation, Bureau of Planning. We’re here today because we want to talk about the different trends regarding transportation, issues people may have, and look at strategies to address them. We have a survey which is available on our website, and we’re passing around a flyer with information about the survey as well. We want to find out what people’s concerns are regarding transportation. We want to look forward – look to the future. We’ve talked to various groups; a few weeks ago, we were at the Wisdom Summit put on by the Maine Council on Aging. The best information comes from simply talking with people. After the presentation we can answer questions and speak to any concerns.
Jennifer Grant: Thank you for the opportunity to speak with you today and get your input and feedback on this very important topic.
Begin Presentation (Click here to view the presentation):
Jennifer: The survey is a good opportunity to provide your personal input on what we’ve discussed today, and we’re looking at that on a regular basis and including it in our plan. The survey allows you to rank the different trends we’ve discussed based on what you think is most important, and which strategies you think are most important to help with those trends. It also looks at different trade-offs – resources are not infinite, so if we invest in certain things we can’t invest in others. We’re looking to get a feel for what people think are the priorities in which we should invest – this is your opportunity to inform that. You can get more information on our long-range plan and our efforts on our website. We want to address any questions you have and listen to your feedback, so please do not hesitate to get in touch with us.
Cullen: Thank you. Does anyone in the group have feedback on the plan and how transportation is working?
Lydia Dawson (MACSP): Non-emergency transportation provided through OMS (Office of MaineCare Services) is the primary mode of transportation people receiving developmental services utilize because it’s free and gives them access to support services. Everything you’ve presented is exciting. I think our hope is that some of that interest in feedback and accessibility would be applied in the non-emergency transportation program. Have you been approached by OMS, or would you be interested in some kind of collaboration to bring this model there?
Scott: I believe some of our staff are working with them, though they are their own separate entity. We’re working on the whole idea of getting people to where they need to be and getting people to the transit system if they are in rural areas. Volunteer networks appears to be an effective way to solve that. One of the things our Commissioner has said is that he wants us to assist those volunteer networks. Our Department builds things, and this is a way to get people access so they can use them.
Peter Stuckey: I will raise the same issue – Maine did a pretty good job for several decades collaborating specifically in more rural areas and sharing resources from different funding streams. A while back that started to become problematic and was bifurcated. As I was looking at that I was trying to figure out whether the DOT has an opportunity to be a policy leader in the area of transportation systems. I think historically you’ve tended more to be the boots on the ground – you create and maintain the infrastructure. The larger question of what kind of infrastructure we should have doesn’t seem to have a leader at this point. I haven’t seen a public forum where those ideas and people’s needs have been discussed and integrated into the planning for that infrastructure design. Do you see going forward that is a role the DOT could play?
Scott: Yes, that’s what our Commissioner has said we ought to do – to look at how people access and use the system.
Peter: There are some challenges. The planning discusses urban areas a lot. The greater challenge is to not abandon the more rural areas.
Scott: Exactly. DOT funding is more devoted to urban areas. That’s the issue – how do you get those people in rural areas to where they want to go? The long-range plan is looking at how people utilize transportation. How do we get people from point a to point b, to places where they want to go? Different funding streams can only go to their dedicated projects. In the planning realm it’s important to look at what the consumer wants and needs.
Peter: Groups like this would be interested in collaboration, concluding with a more focused plan and the resources to support it. It needs to be looked at through one lens.
Scott: We want to have a safe and efficient transportation system given the resources we have. Sometimes resources are less than we need, so we need to be most efficient and effective with them.
-A parent stated that his daughter needs to be supervised on public transportation. He stated that it’s shocking Maine didn’t want to provide attendants, and that he had to go to an administrative hearing to get an assistant for his daughter. He stated he believes his daughter is one of the only people in the state, possibly the only person, with an attendant. It was asked if this is a DHHS issue.
Scott: Yes, that would be in DHHS’ realm.
-It was stated that the best contacts with community knowledge in rural areas would be the road rangers, who assist rural roads that aren’t under town jurisdiction. It was stated that there are many external factors that are barriers for volunteers, including low mileage reimbursement and burnout.
-A parent stated that given the aging population in Maine, and people dealing with various challenges and disabilities, taking into account their needs is important. He stated that it stands to reason that if someone requires assistance in their living situation that they would also need assistance with transportation. It was asked if any thought had been given to this, and if any promising ideas have emerged.
Scott: That’s tough and tough for us. We’re looking at the system and a way to access it. That’s probably more in DHHS’ arena.
-It was stated that it seems like this is a discussion that ought to occur between the actual transportation mode and the system who supports the people who need assistance. It was asked if there is someone who focuses on that in the DOT.
Scott: We’ve assigned someone to be a Mobility Manager – she will be leading that charge, looking at volunteer networks, and looking at how we get people from point a to point b. This is a new duty added to an existing position.
-It was asked in what ways the Mobility Manager will be leading the change and what the work will entail.
Scott: It is a half-time position working with rural transit providers. The position will also work with those volunteers and work to establish a system. This is a minor portion of what we have been doing. At a large mobility meeting our Commissioner made that promise. It’s one aspect of what we do. We will do whatever we can with our resources and staff. Those issues identified for volunteers are known to us, and that might be some of the incentives with which we can help.
Lydia: We do have non-emergency transportation for people accessing medical supports. A problem we come up against over and over is that transportation is a large barrier for employment opportunities. As long as it’s medically-supported employment, the person has access to transportation. However, when someone advances in their employment, where they no longer need support to do the job, they lose access to that transportation. There are a lot of system flaws regarding supporting people with disabilities, this is just another area in which we can all work together. We need to create new opportunities for transportation, so people aren’t relying on medical supports to get to their employment.
Scott: The problems Maine is having with a lack of labor is included in the survey. We’re looking at strategies to address that, including whether the employers themselves could provide transportation.
Lydia: We have a whole pool of people who would love to work, if we could get past these barriers it would really help.
Scott: These volunteer networks aren’t just for medical appointments, they could be utilized for transportation to and from employment.
-It was stated that there is an ITN (Independent Transportation Network) in the Portland area. This is a volunteer driver system, and a great model for a rural state like Maine. A member of the group stated that when her mother could no longer drive she donated her car and it became part of that driver network, which she then utilized for transportation.
-It was stated that OADS just did a round of public forums in September, which included feedback directly from families of people with disabilities, in which transportation came up frequently. Derek Fales ran those forums and could be a resource for information regarding input received.
Cullen: When we held the OAB forums here this summer, there was a lot of discussion about transportation, which is captured in detail in the minutes from those meetings, and could be beneficial to your planning efforts. (Click here for the minutes from part one of the OAB forum; click here for the minutes from part two of the OAB forum).
Jennifer: If you think of any other feedback after the meeting please contact us. There is a contact form on our website which will send an email to me.
Cullen: Thank you for being here today and telling us what’s going on, listening to us about what could make the system better, and having a survey methodology to gather input in an inclusive manner. This is a Coalition designed to create a world that’s more inclusive for everyone. It strikes me that’s what you’re trying to do as well. Thank you again!
End of presentation.
(Round of applause)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads and the Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Cullen: It doesn’t appear that we have anyone from DHHS present today. [There was no one in the room from DHHS, or at the remote sites]. Last month we had representation from DHHS and OCFS (though not OADS), and their attendance is very helpful. It’s important to have DHHS around the table, as they are the ones best fit to answer questions regarding services and the system of care. I hope that they can attend future meetings.
State Legislature Update:
Lydia Dawson – Maine Association for Community Service Providers (MACSP): I brought a few handouts. Speaking of transportation – one of the things that people have voiced concerns about is how to properly file a complaint with non-emergency transportation. When people call they get a lot of “thank you for your input,” but it’s not registered as a complaint. The regulations state that there can only be a certain number of complaints before it becomes a contractual problem for the broker. We have a template of what a complaint could look like, so it’s clear that you’re filing a complaint. (Click here for the broker complaint template). If we start filing complaints in this manner, then we in the community can better track them; we can go back and see if there was a problem communicating those complaints. The percentage of complaints a broker can receive before it becomes a contractual issue I believe is 1% of the eligible population for MaineCare for that region/county, and we’ve consistently come nowhere close to that number despite having so many problems.
-It was asked if the state publishes that data, so that the group can figure out what that 1% would be.
Lydia: I think we could find that information because the Department has presented information to the Legislature about the population they serve.
Cullen: We will attempt to get this data and put it on our website.
Lydia: The best we can do is work to track this better as a community. Using the template to ensure that complaints are filed as actual complaints is one way in which we can do that.
-It was asked if this form would work for provider complaints as well.
Lydia: This is a broker complaint form. What you could do is cross out “broker complaint” and say grievance instead, cross out the language citing the regulation, and use it the same way for providers. A complaint about a provider is technically a grievance.
-It was asked what would happen if complaints exceed 1%.
Lydia: It would be a violation of the broker contract, the Department would have to take notice, and adjust the contract or find a new broker. It would be something reasonable to look at. I’m hearing reports from people being told “there’s no process to file a complaint,” “this is not a real complaint because we’ll fix it for you,” or “you can’t complain more than once.” All of these things are factually inaccurate. This is where working collectively and using the template for a complaint is helpful.
Lydia: At the last meeting there was a request to put rule change information and updates into plain language. I’ve attempted to do that with a one-page handout. (Click here for Lydia’s information on rule changes). Regulations are very hard to put into plain language. If anyone has a service that puts things into plain language, please let me know.
Cullen: The proposed rule changes to Section 21 and 29 would make permanent the increase to the rates for home, work, and community supports, which is wonderful. Is there anything else within the rule about which we should know? Are there any concerns from your perspective?
Lydia: One of the great things about public feedback is you don’t have to take a position either for or against. The comments from MASCP will include thanking them for the rate increase for DSPs, but also asking how we’re going to maintain this rate system moving forward, taking into account cost of living increases, increases to minimum wage, etc. The rate increase puts the wage above minimum wage, but it’s just going to fall under again in the next couple years. We need a better system for keeping up with this. We are also going to offer that this may not be the right system for reimbursing. Perhaps we should look at reforming the system if we’re constantly facing a problem getting DSP pay above minimum wage.
Regarding the creation of psychiatric residential treatment facilities for children, MACSP commented that this model does not include access to community supports – creating an institution doesn’t take care of the fact that a less-restrictive system could work. In the Department’s response to these comments they stated that they could address both – that the creation of a psychiatric residential treatment facility for children doesn’t preclude addressing community supports and inclusion.
Cullen: Regarding the Section 21 and 29 rule changes currently out for public comment (with comments due
by 10/20 in writing to [email protected]) – when the Department is seeking public comment we often send action alerts to the Coalition to inform people of the proposed changes, and the opportunity to provide feedback. Would you be willing to help us construct an action alert regarding this?
Lydia: Absolutely. I can also share MACSP’s comments.
I’ve also brought information detailing why MACSP is against Question One. (Click here for Lydia’s handout with information regarding Question One). The biggest issue to highlight is this creates $200 million in tax funding, which would be put into a brand-new healthcare system available to any person regardless of income or Maine residency. However, this would have no federal match. If we took that money and put it into our existing system, we could eliminate the waitlist for adult services and children’s services because it would be eligible for more than $600 million in federal match. We believe everyone should have healthcare, but we also believe in federal matching rather than relying exclusively on state funding. Importantly, Question One violates the privacy of Maine people and direct care workers by directing the release of their contact information to its board and anyone who can provide 250 signatures requesting it. This may violate HIPAA (Health Insurance Portability and Accountability Act). The people who wrote this referendum didn’t reach out to the disability community for input, and subsequently the results appear very flawed.
Cullen: Thank you for this information, Lydia, it’s very helpful. This is a very complicated referendum question, the flaws of which are not overtly apparent to the general public without this insight.
Peter: Those of us who are aspiring to have a universal, single-payer healthcare system where everyone gets health care, our challenge has been the Medicare system which supports the people who are the enemies of a single-payer system. Question One sounds like it has some problems. I’d be very surprised if we ever got it all in one fell swoop. Is this the shot across the bow that gets us closer to real discussion about a single-payer system? Until we commit to it, it won’t happen. I’m still up in the air, but this seems like it’s coming from people who are trying to move us in that direction.
Lydia: I think one of the things that this gets confused with is Medicaid expansion. This is not Medicaid expansion – this is the creation of a brand-new health care system that only functions if it supplements the other systems. It appears to create a new bureaucracy. One of the problems with Medicaid and Medicare is they both say, “who pays first?” With a third bureaucracy, they could both see themselves as the payer of last resort. Question One also has a whole section devoted to how to create waitlists. It directs its board to “curtail services” and “restrict the total amount of services to eligible persons” when the funds run out, creating more waitlists without matched funding. We all agree that people should have access to these services, but a third system will likely make matters worse. I have no idea why no one was consulted on this. The people behind Question One appear to be well-meaning people who were not connected to the community and stakeholders who could better inform them.
-It was stated that it seems like this could be a momentum-zapper, because it sounds great, so people may vote for it, only to then realize it’s poorly designed, and subsequently the enthusiasm for single-payer could wane. It was stated that people uninformed about single-payer should look at other countries that have single-payer systems and the many benefits they provide.
Disability Rights Maine (DRM) - drme.org
Foxfire Buck: OCFS is hosting town halls to get people’s input on Children’s Behavioral Health Services (click here for more information). We want everyone’s input on this so I encourage people to go to these town halls. Also, DRM is hosting voting fairs; a voting fair is occurring in Hampden on 10/18, Brunswick on 10/22, and Houlton on 11/2.
Other Business:
Cullen: Before we conclude, I wanted to highlight the work that Erin Rowan has done to get candidates and/or their staff to attend today’s meeting. I hope that this has provided an opportunity for them to hear from us and learn about issues about which we care, affecting the people about whom we care. Erin has also worked with others to create a candidate questionnaire, which includes a variety of questions pertaining to issues this group has been following. Those questions have been answered by a number of candidates. Vickey has collected all of that information on the Coalition’s website so folks can access that. (Click here for the candidate questionnaire with responses from gubernatorial candidates and candidates for Congress; click here for the questionnaire with responses from candidates for the state Legislature).
Erin: We have one staffer for a candidate who is still with us, and if there is time it might be beneficial to hear from him.
Henry Beck: I am here today on behalf of Janet Mills. I want to thank Ms. Rowan for putting together the questionnaire. We took a fair amount of time answering every question in a comprehensive way. Janet Mills knows and loves people with disabilities. In three weeks a lot of these questions are on the line.
Erin: Janet Mills is the only gubernatorial candidate to respond to the survey. She even responded during the primaries, and then updated her responses further.
Cullen: I want to thank you, Erin, for the immense amount of work you’ve put in to help candidates contemplate issues affecting people with intellectual/developmental disabilities while they’re campaigning. (Round of applause).
Erin: We partnered with Community Connect and members of the Coalition too!
Cullen: I want to thank our speakers, Jennifer and Scott. I hope the discussion today sparked a dialogue which will continue. I want to thank Foxfire for capturing all of today’s discussion and typing it all into the Zoom chat box. I want to thank the candidates for being here. It’s great to have folks who will be making decisions in the room with us. Please continue to invite decision-makers here, including DHHS staff – this is everyone’s Coalition. I also want to thank the person who let us know about accommodation needs. We want this to be inclusive; that’s what we are working toward for everyone. We will put in place something with our meeting announcement that is very clear for people who have reasonable accommodations requests, so we can be prepared to provide those accommodations for folks.
The next meeting will be on **November 19, 2018**
**Please note this is the third Monday of the month due to the holiday on our regular meeting date**
12-2pm, Burton Fisher Community Meeting Room, located on the First Floor of One City Center (food court area, next to City Deli), Portland. Featured Speakers and Topic TBD.
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).