December 5th, 2016
Department of Human Services
444 Lafayette Road
St. Paul, Minnesota
1:00 p.m. to 3:15 p.m.
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This file is being provided in a lightly edited format. CART (Communication Access Realtime Translation) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. The text may also contain environmental sounds that occurred during the event.
CART provided by Lisa Richardson, CRR, CBC, CCP
Paradigm reporting & Captioning Inc.
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Joan: Looks like we’re ready to go everyone. Hello, we’re going to get going, everyone.
Welcome!! Welcome, welcome. Welcome. Welcome to the 2016 MSCOD Legislative Forum. I’m Joan Wilshire, the Executive Director of the State Council on Disability. Part of the problem of being late here, we want to make sure all our technical pieces are up and running for everyone, so glad we’re getting going here.
A little bit about the Council. State Council on Disability was created in 1973. We exist as an advisory agency to the Governor, state legislature, state agencies and the public regarding disability issues. We conduct trainings and awareness programs and events like this to bring disability information out to the public and individuals just like you.
Today the forum is really your opportunity to hear from a variety of individuals, from legislators to disability organizations, state agencies, about specific proposals that will be coming out for the upcoming session here in a month, and so we want to always bring it to you every year, like we do here. And so this is being webstreamed. There are people not out in the rain today like us, sitting in their offices or at home watching us, and we want everyone to be able to participate when we have questions and answer period. So, at that point, we’ll let you know when we have that opportunity and in the room, you’ll be able to come up and ask your questions. For those on the…
Do I need to say it all over again? I need to say it all over again.
No one told us to turn it on. Okay, well, welcome.
Isn’t it great? We’re going to start all over again with my welcome. So we’ll see if I say the same thing.
Welcome to the 2016 MSCOD Legislative Forum. My name is Joan Wilshire, the Executive Director of the State Council on Disability. The State Council was created back in 1973 and we exist as a — basically an advisory agency to the Governor, state legislature, state agencies and the public regarding disability issues. We hold a variety of events on awareness and other presentations and training, like this one today, to bring the information about disability right to you.
Today’s forum is an opportunity for you to hear about what to expect on different legislative proposals coming up in session, which is about a month away. We’ve got disability organizations, state agencies and legislators that will be here to talk about those issues. Now, this is being webstreamed, which is why we started over again, so all of you webstreamed can actually hear me this time. And so there will be opportunities throughout the two hours here that you can ask questions. In the room, you’ll be able to come up here and ask the questions. For those of you webstreaming, there are a couple of different ways. The email address is email@example.com, and you can tweet us at MSCOD. That stands for the Minnesota State Council on Disabilities, or on Facebook at Minnesota State Council on Disability. And I’ll repeat those right before we go to some of the questions, too, in case you didn’t write those down.
Now, I would like to introduce our Council chair, Jim Thalhuber, and he’ll say a few words.
Jim: Thank you, Joan. Great to be with you. As Chair of the Minnesota State Council on Disability, I would like to welcome you to our annual legislative forum, and whether you’re a speaker, an attendee here in the room, or watching online, we so appreciate you taking the time to join us here this afternoon. I always look forward to this forum every year because it offers, I think, a great opportunity to immerse ourselves in the issues affecting Minnesotans with disabilities on several key, critical issue areas, before the state legislature convenes, gee, in, what, less than a month.
Joan: Less than a month, January 3rd.
Jim: Because once the legislative session begins, you know, we’re pretty much off to the races. There’s little time then to kind of seriously get together and share, reflect, or consider the best alternatives as our legislators wrestle with the big problems and opportunities facing all Minnesotans with disabilities. So it’s my hope that our time together today helps us to more effectively prepare for the upcoming session and, as importantly, gives us some perspective that will help us make smart decisions as we move along.
Now, I want to thank the Minnesota State Council on Disability staff members for putting this session together today and our host, the Department of Human Services for providing us with the space and the technology. Thanks, also, to legislators, officials, advocates, others who will be speaking today, and most of all, thanks to all of you, each one of you for joining us, not just for attending but also for all the things that you do every day on a large scale or a small scale, to do things that make life better for Minnesotans with disabilities.
And with that, I will turn the program back over to Joan and let’s dig in.
Joan: Yep. This becomes our hot seat. A lot of folks will be coming in and out, so, this is Jim’s time to exit and we’ll bring up — everybody knows Senator Jim Abeler. Senator Abeler represents Anoka, senate district 35, and is the incoming chair of the Senate Health and Human Services Finance Committee, so we just want to know all the good juicy details of what’s going to be happening here in this session.
Senator Abeler: Just between you and me, we won’t tell anybody else.
Joan: We’ll turn the mute button off and do that all over again. Great. What do you know?
Senator Abeler: I’m excited to be back, I never thought I would be a Senator or a chair and so here I am both and thanks to the people of my area and it’s nice to be back with so many familiar faces in this room, which is jammed, if you can see in the other places, but it’s the — what’s that Dickens thing, the best of times and the worst of times, and there’s challenges everywhere. And the process, the system is full of people who mean well and who want to make it work better and you want to give everybody the chance to be all they can be, regardless of their status and their — where — what they need help with.
I’m all about that, and so just to make you feel better, the general revenue, the general fund spending in this biennium coming up is $2.5 billion over what it was before. The bad news is, you go, like, really, what did we buy for that? So we’ll be looking into that and setting priorities, among them is the people with disabilities and those who are represented here today. This has always been a high priority for so many people, so let’s just make it practical, let’s give people the chance to live where they want to liver, let’s give them a chance to work where they want to work, to be all they can be and be a key part of our Minnesota infrastructure. Because, frankly, we need everybody, and everybody deserves a chance.
So that’s what I’m looking into.
I was last a chairman in a different time, in 2012, and you may remember those times, when we had a $6 billion deficit so the good news is, there is a little bit of money. The bad news is everybody wants a bit of it. We’ve spent 6 billion out of the billion four we have.
My door is open and I would like to you come visit me if you have ideas to how to better take care of yourself, whether you run an agency or one individual living somewhere and you have some thoughts.
The successes that we had in 2011 that we still carry forward, I had 400 meetings with people, 400, including you —
Joan: Yep. Several times.
Senator Abeler: You had about three of those and listening to people who actually experienced the services, experienced it not working or working well. So what works well, we should do more of it. If it’s not working, let’s stop doing that.
So — and actually my number, if you want to call Karen, who would love to hear from all of you today at my office is 651-296-3733. 3733 is the active part of it, all the rest of the phone numbers are the same. And we’ll give you 15 minutes to come and tell your ideas and I will predict if ten people come with ideas, four of those are going to be something we’re going to work on because they’re practical and doable. Some of them are just impossible but don’t not come because you think your idea is hard.
Hard might be better, so…If people want to ask questions, I have time for that, whatever you have time for.
Joan: We’re going to do questions in a little bit. Are you able to stick around for a little bit?
Senator Abeler: No, I have to go start solving these problems. I’m sorry.
Joan: No, can you stay?
Senator Abeler: No.
Joan: Then we’ll do some quick questions, then. We’ll start in the room and, again, those of you out in webstreaming land, again, it’s firstname.lastname@example.org, or tweet us at MSCOD, or questions and then Facebook [at] Minnesota State Council on Disability to message us.
So let’s start in the room.
If you have questions, I will need you to come up and speak in one of these octagon shaping black little microphones on the table.
Anyone want to come up and ask a quick question? You’ve got the Senator here, this is live, this is great. It’s your chance.
Senator Abeler: If they want to come to my office, that’s okay, too.
Mr. Bangsberg, he’s a shy lad.
Joan: He’s going to ask you a tough one, so be ready.
Jeff Bangsberg: Good afternoon, Joan and Senator Abeler, it’s nice to see you here today. We all in the disability community consider you a friend of the disability community and are really happy that you’re here today. I guess more of a technical question, you know, we know the general overview of the session and as one who is come back out of retirement to perhaps venture back into the world over there, have you guys — have the leadership of the house or the senate made any determinations or do you have any ideas of when the targets will start to be set forth between the various major pieces of legislation, like education, higher education, health and human services and the — that will give us an idea as to when we should propose our ideas to people like yourself, and what kind of broad — I know this hasn’t been hammered out yet but maybe some kind of a broad timetable you can give us as far as when the session starts, when does it end, and when we need to get our legislation in here.
Senator Abeler: If you don’t know Jeff, he’s been a tireless champion.
Joan: He tried to retire, we won’t let him.
Senator Abeler: Let me give you a little structure about that. The targets never come out before the February forecast, which comes out at the end of February. So I would predict targets at the earliest would be out middle of March. But we’re going to begin working the first chance we can in our committees, and by the way, I can give you — the committee times were announced today, so I have news.
Jeff Bangsberg: That’s good to here.
Senator Abeler: I lobbied for a convenient time. How is 3:00? My committee meets Monday and Wednesday at 3:00 and it will drag on until — it’s scheduled until 4:30 but I’m sure we’ll be there until 5:00 a lot of times and if it’s going to be past that, we’ll let you know. I expect virtually no evening hearings until we just have a ton of something special to work on, which we’ll give people notice about. So I’m really happy about that time. And the nice thing about that time is it’s far enough from the floor session times that it probably won’t be stepped on, like you’ve had to sit and wait and wait. So I’m not a fan of evening hearings, I’m not a fan of Friday hearings so two days a week, Monday, Wednesday, 3:00, policy and finance altogether.
If you’re interested in the senior issues, that’s going to be — the first committee time on Wednesday morning with Senator Housley. And for the health care folks, it’s going to be Tuesday-Thursday, also in the afternoon at 3:00. Senator Benson. And so anything that’s related to health care is going to be on Senator Benson’s watch. If it’s a medical assistance, Pmap, MinnesotaCare, the policy question, navigators, that will all go in her world and we’ll have all the human service matters before us.
To answer your question, when to get going, now would be good. Like I said, I had 400 meetings last — in 20 — before Christmas and into March, so ideas take time to craft, they take time to get fiscal notes, but we have to have ideas and they have to get going, and so the target, I predict, will be a modest target at best and I hope it’s not negative. I don’t know what the forecast is a little soft on — it’s not like a big booming forecast, it’s a stable forecast and you know whatever we do has a lot of future costs that go into it.
So one thing else I’ll say and then — I don’t know if I said this but what I imagine we’re going to work on, what do we wish we had for a system. How many people do we wish could stay in their homes longer and how many relevant how many people really need to be in a more structured environment. What if they can have an apartment and room-share with somebody or have their own. What would be — what we like to have people do for flexibility and freedom. Some people need a lot of support, some need a little. Let’s start rebuilding that system. Turns out that system costs less. How do we help get people who want to be serviced on the service side into a career track who want to hang around for their entire career, and that’s on my head and in my mind.
So if you’re in for that, that’s what I’m up for and we’re going to do all we can to — we can’t do it overnight but that’s my vision.
Jeff Bangsberg: You’ve already answered many questions that are important for all of us, thank you.
Senator Abeler: I’m excited, much more programming. My number is 651-296-3733. My email is accessible. You can write me but I would love to meet as many of 15 you as I can fit into my schedule because you have good ideas and I want to meet everybody.
Jeff Bangsberg: Do you know where your hearings will be held, the meeting rooms?
Senator Abeler: I’m sure in one of the big ones. There’s three hearings at that time. It will be one of the big senate rooms which I think is really — is it well accessible for you? Do you like those?
Jeff Bangsberg: Room 15 is good.
Senator Abeler: No, in the new Minnesota senate building. That’s pretty good for you guys.
So I hope you like the later time. I did that on purpose, so, God bless you all. You’re really important to me and I’m giving you all a hug.
Jeff Bangsberg: Thank you very much.
Joan: Good to see you. Thanks so much for coming.
We have not gotten confirmation on someone coming from the House side so we’re going to keep moving on and invite Assistant Commissioner Claire Wilson. She’s in the back. Come through the crowd.
Claire Wilson: I know, so many humans in here and it’s hot.
Joan: Don’t count how many because there was a limit.
We’re just going to —
Claire Wilson: I hate having my back to you people. I can’t worry about that.
Joan: When you do these, you need to concentrate — concentrate on speaking into here and for the web. You’re not ignoring people in the room but you kind of are.
Claire Wilson: I’m not really ignoring but I kind of am.
So, hi, everybody.
Joan: Welcome. Now, you just got appointed in June, so tell us what you’re up to, what you’re doing, a little bit about your background and want to know who you are, Claire.
Claire Wilson: Hi, everybody. I feel like I’ve spoken to a plethora of you in this room already but my name is Claire Wilson. I am the assistant commissioner of the community supports administration, and my administration oversees chemical health, mental health, Disability Services Division, housing, deaf and hard-of-hearing services and HIV/AIDS.
Audience: Is that all?
Claire Wilson: That’s all for this week.
As Joan said, I was appointed in June. Prior to coming to the state, I was the executive director of the Minnesota Association of Community Mental Health Programs, so I worked the safety net providers on mental and chemical health policy. Prior to that, I was with the Secretary of State’s office for several years doing outreach and engagement with communities who typically underparticipate in elections, and got to meet many of you through that work which is really exciting. Prior to that, I was at the Loft Literary Center teaching kids how to write, but I started my life in the Twin Cities actually when I came here in the early 2000s to get sober and my very first job was as a PCA at St. David’s Family and Youth Services.
So, yay PCAs!
So I am a huge fan of hoping that so many of our young people would start their careers in service and, you know, have often thought it would be great if we had a program, you know, similar to Americorps which required everybody to be a PCA for a year. We’ll talk to Senator Abeler about that. I’m just kidding, that’s not a real proposal.
So I am — you know, I come to the state really with the heart of a community organizer and am really excited to be working with you all this session, and beyond to really look at how we can make our services and programs as person-centered as possible, as streamlined as possible, and also to make sure that they are flexible enough to meet people where they are at any time in their life, or at any time in their spectrum of recovery.
And I also want to recognize that, you know, that is not going to happen unless we also address the workforce issues and that that really is and continues to be one of our most critical issues in front of us. And so I’m really looking forward to how we can all engage and work together to address some of those issues.
And then I think Joan just wanted me to do a brief overview of some of our legislative proposals. So I am just going to briefly, just so we’re all on the same page, so we are developing proposals, of course, for consideration in the Governor’s budget. No decision has been made about what will be included in the Governor’s budget. But in the spirit of cooperation, I think it’s good for folks to know what direction we’re thinking about and many of you have already been engaged in the development of some of these proposals.
In the Disability Services Division, of course, we are looking at a landscape that’s right now being shaped by several things. I mean, one is the HCBS rule. One is the Olmstead Plan and then one is just a continued recognition that as more people access long-term services and supports, we need to figure out different ways for there to be provider settings and standards so that people are living in the community of their choice with the services that make sense. So, really, this package is informed by that and informed by a true person-centered change so that we can begin to get to these services that reflect people’s needs at particular moments in time.
So one thing that we are proposing is what is actually called person-centered systems transformation, which is ongoing work with organizations to ensure that staff has person-centered training and to make sure that services are delivered in a way that is person-centered. And then it also provides funding to do person-centered planning, sort of distinct from case management, so fulfilling those person-centered planning protocols.
This is really, I think, one of our most critical proposals that are under development because, really, to really see person-centered planning come in to be a fully realized project, we have to have systems change throughout organizations, that includes lead agencies, it includes within the state, so some of that work is already underway and we do have some community of practices who have been working with the person-centered training and just have been really impressed with the outcomes.
Another proposal that we’re developing is an electronic marketplace, so this would be an opportunity for people to access services through an electronic marketplace, where services, instead of the provider sort of bidding on you, you are able to bid on the provider. This is something that’s been under development in other states and this is really kind of a two-phased project. I mean, one sort of developing what it would look like, how we would get to a work plan and then developing and implementing an online marketplace. So probably by the time we get that developed, the web will be something totally obsolete but we’ll get on that.
We’re also looking at increasing the individual PCA hour limit to 310 hours a month, so that’s currently at 275 hours. Again, this is kind of to address the ability for people to work more hours, just as a step to kind of getting closer to filling some of those gaps. We’re also going to be making some recommendations around further studying individualized budgeting because we know that this is an important way that people can control access to their own services.
We are looking at two exceptions to the corporate foster care moratorium. One being the residential care services, which will be sunsetting or ending at the end of the year, so an exception to allow people to access services who were in those settings. And then for some settings which currently sort of look and feel like foster care but are not licensed as such.
Then we are also looking at adding competency-based training for 245B licensure, looking at a study to think about, so, again, this is just a study to consider the potential for consolidating the waivers. So are there ways that we could administratively look look at creating less in the ways that we administer the waivers. We also are considering looking at clarifying some of the provider controls in 245D, and that’s really — that’s really about it. And then also of course looking at how to support providers in the community as we move to full implementation of the HCBS rule.
Now because we don’t live in a vacuum of disability services, I thought I would give a quick overview of what we’re thinking about with mental and chemical health and our housing proposals, so we also have been working for several years, of course, to work on GRH, and look at the way that it is accessed. So we have been developing a proposal that would consider moving — now I’ll just — so I’ll tell you what it’s going to consider. We got direction from CMS about a year ago that housing support, transition services could be considered in the Medicaid benefit. So this proposal hinged upon moving some of those services into M.A., and then expanding the MSA benefit to be a bit more affordable so that people in a GRH provider-controlled setting could access the MSA benefit.
Now, we of course have had a little bit of a change in political climate and, you know, there are some things to consider and think about when you think about moving new benefits into the benefit set, if there is a potential for not everybody who currently can access Medicaid to access Medicaid. So we’re still thinking through kind of the development of that proposal but it would also fund housing navigators, so people who could act as resources for people who are trying to access and maintain their housing.
So that proposal continues to be under development. And in terms of the C.D. world, we’ve been looking at more longitudinal care, so providing direct access, so this would involve essentially revisiting rule 25 which is where you get your assessment, and changing it to an assessment that — a more comprehensive assessment that would then allow people to have a choice in terms of their placement, so now you’re assessed by rule 25, you know, you’re kind of told what level of care you qualify for and then you go into that level of care. This creates long wait times sometimes for people who are waiting to access certain levels of service. We’re hoping that by eliminating that barrier, more people would choose a service that’s right for them and in turn have an opportunity to recover.
We’re also looking at some withdrawal management services into the benefit set and looking at care coordination and peer services as billable services, so just as we have certified peer specialists in the mental health world, there would be certified special yes, sirs in the drug and alcohol recovery world. Those are changes that are not just good reforms but reforms that we think do end up saving the system cost further down the road.
And in the world of mental health, we of course just completed the Governor’s task force on mental health. It looked at several different areas of recommendations, including creating a stronger continuum of services that includes more focus on prevention and early intervention than our current system which spend a lot of attention on intensive treatments and later interventions. I should say time and resources. It also looked at housing as a critical need for folks with mental health issues. And determined that as a priority.
And it did speak also to our crisis system and our inpatient bed capacity and made some recommendations around those areas. In our current process of developing proposals, we are looking at expanding the transitions to community services which are services which help people currently who are in the AMRTC access and no longer meeting hospital level of care find placement within the community. This would expand that to individuals in CBHHs which are the community behavior hospitals, and would also expand and include folks who are 65 or older. That’s a proposal that’s been before the legislature self years.
And then also looking at creating some standards or solidifying the standard around our crisis services as we move to 24/7 crisis — mobile crisis response in all 87 counties which should become a reality this year. And then expanding our forensic act teams which are assertive community action teams which currently function both in the community and also in correction settings.
So, again, kind of throughout the development of all those, we are looking at how to make services more responsive to the need of individuals when they’re in certain [indiscernible] of recovery. So taken together, it’s a comprehensive package. There’s lots of moving pieces so I don’t expect just anybody to grasp all of that right now and that was a very high-level overview because it’s hot in here and there’s…
Joan: It’s hotter now.
Claire: It’s hotter now but I’d be happy to answer any questions if folks had them.
Joan: Sure, we can do this some quick questions right now if somebody has them. Questions?
Claire: Come on.
Joan: Chris? You have a loud voice so I’ll let you sit back there and use your big boy voice.
Chris: Hi, Commissioner, thanks for coming. Do you have any position on increasing the wage rate for PCA?
Claire: He asked if I had any position on increasing the wage for PCAs. Do I have to answer all the questions?
I’m just kidding, just kidding. Do I personally? Yes, of course. We — so right now there are other — I’m not touching on all the proposals that are under development and, you know, we are still currently in negotiations with PCAs who are unionized with SCIU, so all of that is still a moving target. Do I personally support an increase in the wage? Yes, I personally do.
Chris: Is DHS likely to support on behalf of the administration a wage increase for PCAs?
Claire: Like I said, there are several pieces that are still in development.
Chris: Okay, fair enough.
Joan: Okay. There was — okay.
Speaker: Should I come up there or speak here?
Joan: Come up because I’m worried the folks in webstreaming land are not going to hear and these are very technical little hearing buds here, so…
Speaker: Where do I speak into?
Joan: You can speak into that one right there. That one, either one of them.
Speaker: Hi, I have never done this before so I’m brand-new, literally. So I don’t know how to address you or —
Claire: Just madam or…
Joan: This is an informal type of event so you don’t have to do anything formal.
Speaker: Do we know why this box is talking?
George: Maybe release the button.
Speaker: Did I do something wrong?
George: I think you’re okay. Let’s keep going and —
Joan: Keep speaking. We’ll let you know if you have to say it over again.
Speaker: Actually I have an issue with regard to the proposals in the package that you have been referring to, in order to — in order to weed out any of the errors or any of the possible variations within the scenarios presented, have you and — is it legislators, I don’t — you and the team that have been working on this package, have you guys considered speaking to — or contracting with a think tank of individuals who are of very great intelligence, so to speak, savants, people who are brilliant to the people where they can see all the issues?
Did you find out?
George: We’re good.
Speaker: In order to make sure it has a solid foundation to work off of instead of — you know what I mean?
Claire: Sure, that’s a great question.
Speaker: That, and I also voted for you, as well, do you have a business card?
Claire: I do have a business card, I didn’t run for office but aisle take your vote anyway.
Speaker: Do I stand here or go back —
Joan: You can go back now, but thanks for your question.
Claire: That’s such a good question. Maybe I should talk a little bit about the process that I’m speaking to. So the Department of Human Services develops their budget proposals for consideration by the Governor who then is sort of the ultimate decider around what will be included in the Governor’s best of your knowledge it. That Governor’s budget is then presented to the legislature and the Governor works with the legislature to determine what the final outcome will be, so both the house and the senate sort of present their own budgets and it’s kind of a three-way conversation around what will be included ultimately and how well spend or not spend the additional dollars.
So as the Department has developed its language, it has worked with different stakeholders, depending on what the area is. And of course we’re not — we can’t actually kind of release the final language until it comes out as a part of the Governor’s budget. So at that point, of course, it starts to go through the legislative process and your voice is, again, all very welcome in terms of what you support within the language, what you think could be different.
There’s still opportunities through the legislative process to make some of those amendments and changes and work with other stakeholders and legislators and our office and the Governor’s office to think about how it should best be crafted. We’ve also worked and presented these ideas and priorities sort of an ongoing basis throughout the year so it’s a long — developing these proposals is quite a long process and I think, you know, we can all recognize that it’s a human process and doesn’t always result in language that everybody agrees on but it certainly includes input from both agency folks as well as the community.
Joan: Great. Last question.
Erin: Okay. That was a helpful overview and I’m curious, like Senator Abeler talked about the timeline, it sounds like I’m guessing you’re right in the midst of finalizing these proposals, and how can — I’m coming from an agency standpoint but kind of piggybacking on Chris’s question about the wages, how can we be a part of your talking process to include that terribly, terribly crucial topic. How can that be part of your proposals that you’re trying to get on the docket with the Governor?
Claire: That’s a great question, so I think one —
Joan: Can you summarize it for folks —
Claire: Essentially Erin’s question was how can we frame these proposals in the context of the workforce shortage, is that kind of what you’re saying.
Erin: Nice summary, thank you.
Claire: Several of these proposals do attempt to address that, so I think that we’ll be able to lift those up more fully once we have all the language and once all the proposals have been developed and we can be really public about those. There are other agencies and coalitions of course that are working directly on that language and I would encourage to you connect with them and I just think it’s incumbent on all of us, when we have the attention of the legislature to frame all of these issues, and this is all wonderful work and it’s not going to happen unless we have a workforce to deliver it.
And that is — I mean, we already know it’s a life-and-death crisis in the community and it’s one piece that all of us, regardless of what our agendas are can agree on. And I think that as you come to speak in support of, or potentially opposition to the Governor’s — I mean, you know, everybody is going to have a different place they’re going to come from. I always encourage you to always address workforce when you address the legislators because this is a place where there can be a cacophony of voices to lift that up.
And there will be things within our package that we’ll be able to support that and then we’re going to be happy to work with others, as well, and if there are proposals that you’re working on that you think that you would like to reach out to DHS to see if there are some technical assistance available or see how it might fit in with some of the other proposals, I would encourage to you do that. I don’t have business cards right now but I’m Claire.email@example.com. 43123, you can call me any time, if you happen to be in the Anderson Building, you can stop by, if you found parking.
Joan: Thanks so much for coming. We’re going to keep on moving. I’m going to ask Chris to come up, and thanks for stopping by and feel free to stay. You’re going to hear a lot —
Claire: I wish I could, I have to go but thank you so much for all you’re doing, it’s such a privilege to work with you.
Joan: We’re going to have Chris Serres come up here and basically we’re going to turn our attention to Olmstead reform, and for those of you unfamiliar with the Olmstead reform and plan, in 1999, the U.S. Supreme Court issued a ruling that prohibited states from really unnecessarily confining people with disabilities into special homes or workplaces, and under the supervision of the U.S. District Judge Donovan Frank right here in the State of Minnesota, he’s been working on that reform in residential and employment services.
In a nutshell, basically, we’re looking at getting people out of the institutional-type settings, into the community of their choice and that includes work, as well. Do you want to work, what would you like to do and not going directly into a day training — is in the habilitation center and looking at opportunity that might best fit for them as an individual.
So that’s kind of the background of what we’re talking about when we use the word “Olmstead.” And we’re not talking about Olmsted County down in the Rochester area, we always have to preface that. They get too much attention down there because of that.
Welcome, Chris. Chris Serres is a reporter with the “Star Tribune” and last year he attended our event here, the legislative forum, and basically Chris this year and last year has been writing articles focused around the Olmstead issue. We thought we’d bring him back, he’s written some this last year, and have him kind of talk about the issues he was writing about and it’s always kind of good to bring us up to date why you even decided to do this, what’s — what’s so interesting about it?
Chris: Well, thank you very, very much. First off, I just want to say it’s an honor to be able to share the same table as Darlene. She’s just done tremendous work on the Olmstead Plan, and just a little bit of background, so my name is Chris Serres, a reporter with the “Star Tribune.” I write about social services which is pretty broad, right? So I write about, you know, disability issues, mental health, poverty programs, as well as aging issues, so it’s a huge area. I will say that over the past two years, I would say about, you know, at least 60% of my reporting has been on disability issues and Olmstead has been a huge piece of that.
In 2013, the draft plan came down and unlike people here who are on the front lines, I actually did not know what the Olmstead really was, so I had to go back and read, you know, Judge Ruth Bader Ginsberg’s ruling from 1999, and it was illuminating and I realized what a huge challenge it is for the state and that really became kind of the prism through which we viewed our disability coverage from that point forward, was through, you know, Olmstead and through the ADA. Specifically through a civil rights prism, that people have a right to self determination and that states have an affirmative right to not only provide services but also to make sure that they get those services in the least restrictive environment possible, and this is not, you know, voluntary, this is the law and we have to understand it as the law. And so that’s kind of the prism that we approached it, starting in 2013.
And frankly it was a Godsend that there was an Olmstead Plan that was created and it’s a living document so it’s gone through many iterations and it hasn’t been — it’s been messy, to watch that, but that’s a good thing. Along the way we’ve seen benchmarks develop which is terrific because I think one of the issues that I faced early on in my reporting was a lot of the things that the State wanted to fix, you know, whether it was the huge numbers of people that are still in segregated settings, a lot of it wasn’t even being tracked so one of the beauties of the Olmstead Plan was we now can track it and I think that’s crucial because how do you fix a problem unless you can actually track it.
So the Olmstead Plan, the Olmstead Office I think has been fantastic and from a reporter’s standpoint, it’s been great to watch some of the progress that’s been made by the subcabinet and DHS in achieving some of the goals. We just saw a couple weeks ago, they announced the elimination of the CADI waiver wait list which is, I think, a huge accomplishment. We now have, you know, armies of VR counselors going out to talk to people in some of the sheltered workshops, which is good. And of course the Governor is now — you know, he has a state hiring goal which is more ambitious towards hiring people with disabilities. So it’s exciting to see the progress that’s being made, you know, as this is — as this is unfolding.
Just a couple things that I want to mention. We are laser focused on concerns around barriers to self actualization, wherever those barriers exist, so we will continue to write about them and cover them until they go away. This issue of the workforce shortage I think is huge, obviously, you know, one thing I hear from people is it’s great to have the ambitious hiring goals but what good are the goals if you can’t get out of your bed in the morning because there’s no one there to help you bathe and shower and to get to that job. So I think the PCA shortage, the crisis in care more broadly, the crisis in care and the way that we undervalue the work that’s being done predominantly by women I think has to be addressed, and I think that is going to be a major story for us in 2017. If it’s not addressed, I think we’ll have to hold someone accountable. If it is addressed, then we’ll cover that, as well. But the workforce shortage is a monumental issue and it’s affecting obviously thousands if not tens of thousands of people across the state.
The other thing I would just mention, it was great to hear Senator Abeler speak to the fact that he’s interested in hearing ideas. I will say that I get really excited about ideas, fresh ideas about how to solve some of these problems. We’re not only interested in writing about gaps even though it might seem like that. We are keenly interested in writing about idea. We have a lot of dynamic providers in this state and a lot of times we just don’t hear about their idea so I would encourage anyone here to reach out to me at any time and it doesn’t have to be, you know, a huge monumental undertaking. It can just be a twist on an old problem, something that might give people a light at the end of the tunnel that, you know, maybe some day in the future we could institutionalize.
So something to think about, I’m really interested in solutions, not just the problem itself, and with that, I would turn it — I will say, like everybody else, I would encourage people here to reach out to me at any time. Again, it’s Chris Serres, and my phone number is 612 — is that okay to give out my phone number?
Joan: If folks aren’t able to write things down quick enough, they can contact our office and we’ll get that information at the end, as well, and be glad to give out emails and phone numbers. You may regret that, but…
It’s a good thing, so you can certainly stay there, Chris, and I’m going to introduce Darlene Zangara, the Executive Director of the Olmstead Implementation Office, and she’s been working on the implementation of the Olmstead Plan. So thank you, Darlene, and I think you’ll do a nice complement here to things Chris has been speaking about.
Darlene: Yes, thank you, Joan, Chris, an honor to be here today. I was here last year and, again, this year, what a wonderful opportunity to give you a little bit of an overview of what’s been happening over the year with the Olmstead Plan. As you know, it’s very important piece of document to help guide our state agencies and with specific goals and strategies, and how we can enhance the way we provide services to people with disabilities.
As you know, on September 29th of 2015, that plan was approved after several different versions, and when the judge finally approved that plan so, we have just celebrated our one-year anniversary this last September. And what that means is that we are learning a lot about how the plan is working for us. This year, we have an annual public input process. The subcabinet is responsible for making sure we are able to gather input, as Chris and Joan just mentioned, our document is a living, evolving document and the goals themselves have to be approved as well as our strategies and how we get there.
Oftentimes we look and try to do some adjusting to maximize our opportunities to achieve those goals. We just did our first round of public input process and we received many, many feedback and information regarding the workforce shortage, as well. With those comment that we have received to the State, we have delegated all of the appropriate comments to the appropriate agencies for them to look at and see how they can, hum, enhance our 39 measurable goals.
Really, that is the focus on that work, on the document that’s happening at this time. Right now, the state agencies have received those comments and they’re working to make some amendments to those goals, and those will be put out again for the second public input round that will happen, December 20th through January 19th. We will be seeking your comments at that time and after we get those comments, on the 19th, we’ll then go through another drafting stage at that time, then we will post for our third round of public comments which will be January 31st through February 7th. And the postings will happen on the 31st, so please look forward to getting that sorry. The first rounds we had several listening sessions around the state, we did some experimenting with different approaches of getting input from our constituents. We provided sessions, we also had a focus group, we also had a large group, as well, so your input is very valuable and, please, give us some — gives us some guidelines on what our goals should look like.
We need to hear from you. You know, our goal is ambitious enough. Are they realistic? Are there any potential barriers or challenges that will prevent us from reaching those goals? Are there any opportunities that we’re not thinking of and that we’re not aware of that could help us accomplish them? So we will be continuing with that.
And really that’s pretty much an overview of how it’s going with us and, again, any of your groups want some more information about the Olmstead Plan itself and how we are getting there, we are always available and willing to come out and do some education, more work about the Olmstead Plan. Really, your opportunity to — and to take advantage and leverage the plan because it’s yours, it’s your plan.
Joan: Great. We’ve got an opportunity for just a couple of questions. Are there any folks in the room?
Mark, can I get you to come up and…
Mark: I just want to take this opportunity — Mark Hughes, former board member Minnesota State Council on Disabilities, producer of — I want to thank you for coming out. I understand we’re going to be on the air together in January of 2017.
I think you’ve done some great work and I think what people need to know here is that if staff from the “Star Tribune” and some of the bigger media outlets are willing to work together, we need to work together to find new ideas, to understand each other and the production will be much more streamlined and I think we’ll get a lot more done so I just want to say thank you for what you’ve done and what you continue to do.
Chris: Thanks, Mark.
Joan: Comments? I know we keep checking email and that’s firstname.lastname@example.org, all of you out there sitting in the comfort of your desks at home or at work, please feel free to ask questions, we’re waiting to hear from you. Anybody else in the room? Otherwise we’ll keep moving on. We’ve got a packed rest of the hour.
Okay. Thanks again for both you — do you have one more comment?
Darlene: Just one more, yes. Again, I know Chris has given out his phone number so a way to give us more public input is to either email, our phone or in person, so please feel free to reach out as best way as possible, whatever feels comfortable for you. Our number is 651-318 — sorry. I’m going to give you a different number. 651-296-8081. And also we have a new staff person, she is our community engagement/communications person, and she will be responsible to make that outreach for the people in the community so I’m hoping that you will help us and help her feel more welcome, her name is Melody Johnson, back here. So we are trying to enhance our communications across the state and the community, so thank you very much.
Joan: Great. Good opportunities. Thanks again, both of you feel free to stay, as well. Okay. Moving on, now we’re going to have some individual organizations talk. It’s really important opportunities.
Let’s see, Erica. Do you want to — why don’t you come up —
Erica: We’re a team.
Joan: I think it’s easier for everything. Erica, and we’ve got Rebecca and they’ll be talking about medical assistance reform which is a hot issue always here at the capitol and we do a lot of work. Erica is from the Minnesota Brain Injury — we never have enough room.
I’ll move over.
For the Minnesota Brain Injury Alliance and also along with Minnesota Consortium For Citizens With Disabilities, as well, which is going to be a major legislative issue so I’m going to throw it over to you and take it away.
Erica: All right. Thanks so much for the opportunity to talk. My name is Erica Schmiel, I am with the Minnesota Brain Injury Alliance and I’m here with Rebecca Preston, one of our citizen advocates who has been advocating with legislators for several years at the capitol about medical assistance. And medical assistance for people with disabilities is going to, once again, be a top priority for the Brain Injury Alliance as well as one of the top priorities for the Minnesota Consortium For citizens with disabilities.
I want to remind people in this room, as most of you know, medical assistance is really important for people with disabilities because it gives them access to the home and community-based services through the M.A. waiver program that supports independent living. That’s why we keep coming back year after year because it’s that important to advancing the independence of people with disabilities.
Now, the problem that we’re addressing with legislation is the eligibility limits for people with disabilities to qualify for medical assistance are way too low. And what’s happening is it’s forcing thousands of people with disabilities deep into poverty to get the help they need to live independently.
Let me say that again.
The program whose goal is to support independent living is impoverishing people with disabilities to qualify. Now, clearly those medical assistance — the policy in our state and those limits are a significant barrier to advancing the independence of people with disabilities, and truly allowing them to successfully live independently in the communities of their choice, how they want to live. It’s a significant barrier.
So I want to take just a minute because I know this issue gets a little dry but I want to explain just how low those eligibility limits are. Now, first of all, I want to make it clear that state policy determines who qualifies by setting monthly income and total assets. So for people with disabilities in the State of Minnesota to qualify for medical assistance, they cannot have income that exceeds $990 a month. Now, if their income is above that, they can still access medical assistance if they meet a spend-down limit and today that spend-down limit is $792 a month.
So what that means is, people with disabilities are expected to spend their Social Security income on their medical bills until they are left with $792 month to live on before M.A. starts paying. That’s a major problem.
The other limit is the asset limit to qualify for medical assistance for people with disabilities. It has been $3,000 total savings since 1983. And while it excludes a house and a car, clearly, you know, how many people in this room can maintain their house and their car on $3,000 total? Again, it’s a major, major barrier.
So I’m here today to say that any legislative solution we’re going to pursue recognize and absolutely must recognize that independence — and this is true independence, with options, with choices, requires that people with disabilities get to keep enough social security income and get to keep enough of their savings to meet their basic needs. And I’m talking basic need, I’m talking rent, I’m talking food, I’m talking clothes, I’m talking toilet paper. That is the principle of any M.A. legislation.
Now, I know it gets a little dry which is why I have Rebecca Preston here to really explain the impact, what does the impact of the current policy mean on a daily basis to a real person. So, Rebecca, you want to trade places so we can —
Joan: No, we’re fine.
Erica: Rebecca will share a story on what life has been like on medical assistance with the spend-down for the last 11 years.
Rebecca: Hi. My name is Rebecca Preston and I live in Hopkins. I sustained a traumatic brain injury in December, 2005, when my car was hit by a drunk driver. Before my injury, I held two administrative assistant jobs. I was an avid writer and loved to read, play the piano and sing. Since my brain injury, my short-term memory is so poor, I can’t remember the beginning of a story by the time I reach the end. My left eye is now fixed and dilated so seeing at night is out of the question.
I am thankful for the CADI waiver services through medical assistance, M.A., that have been getting me — that I’ve been getting for the last 12 years.
My memory problems make it hard to do things that need to get done to live independently, like pay a few bills, interpret my mail, so the help I get from my independent living services — I’m sorry, my independent living skills person, worker, is super important. To help me live on my own. Also, I also rely on my ALS worker, too, for rides to the grocery store and other errands since I don’t drive, and transportation in the suburbs is very limited.
I live on $1,075 a month from Social Security disability insurance. Because this is above the federal poverty level, I’m expected to pay almost $300 of my medical bills each month before medical assistance starts paying. This is known as my spend-down. To qualify for medical assistance and waiver services. And leaves me with a $792 a month to live on.
I don’t understand why I must live so far below the poverty level to qualify for the help I need to stay independent. Feels like I’m being penalized for working hard my whole life and paying into SSDI.
I live in a market-rate apartment and pay $735 a month to rent because the waiting list for section 8 has been closed for 11 years. I love where I’m living, I love where I’m living and I am involved in the community. But after paying my spend-down and rent, I have about $10 left to pay a few bills. And eat a doughnut. To make ends meet, I go to the food shelf which has mostly unhealthy food choices.
Minnesota’s medical assistance policy makes it impossible for people with disabilities to climb out of poverty, when we are left with just $792 a month to live on and don’t keep more than $3,000 in savings. Wouldn’t it make more sense to let me keep more of my Social Security income so I can pay my own bills and meet my own needs for food, shelter, clothing?
Please change medical assistance policy, please change the medical assistance policy so people with disabilities, like me, can keep more of their Social Security income and savings and still access M.A. and support services. I want to be able to pay and live — pay my own bills and live independently with dignity.
Erica: So you can see why Rebecca is such an important part of our advocacy, she doesn’t have enough money to meet her basic needs and needs to go to the food shelf. This is really — so my first ask for all of you out there and here, we need more stories like Rebecca’s to really explain the impact of this medical assistance policy on people every day. It’s much more understandable when you have a real face with what — and a real budget and what that means to people. So stories are something that we really need and I encourage to you contact either the Brain Injury Alliance office or the Consortium For Citizens With Disabilities Office if you want to share your information and we’ll help you do that.
I have a few more minutes, I think I want to talk —
Joan: Only going to give you one. We’re running out of time.
Erica: Just so you know, we’re still working out the details of what this legislation is going to look like, I think I’ve made it clear, the overall goal is keep more Social Security income, keep more savings. We’re considering having two separate bills, one a spend-down bill that would incrementally raise the spend-down limit to the poverty level. We’re also looking at an asset disregard option, perhaps, that is targeted to people living in the community, not in nursing homes, so they can keep up to $10,000 so they can truly afford to keep up their homes, keep up their cars.
I mean, these are all options we’re looking at. Again, changed political environment. We’re working with DHS on getting some information on what some of those things would look like so stay tuned.
Thank you very much.
Joan: Great, great. Thanks. This is great information. Everybody needs it so appreciate it.
Okay. We’re going to keep on moving.
I need to have Jeff come up, and Jeff, everybody’s time has been reduced so if you can give a great summary, Jeff has got a great presentation here on the PCA shortage on the workforce so — which is a common theme here today.
So take it away, Jeff.
Jeff Bangsberg: Thank you, Joan, and thank you for those who are on the webinar, whether you’re in your homes or out in the community. My name is Jeff Bangsberg and I have worked on many of the personal care assistant issues in the past. I also want to just go on record that I do support the M.A. income standard issue that was just recently brought up in the previous topic this afternoon and I think that is a critical issue. People cannot live on that little bit of money out in the community if they don’t work. That is just horrible.
We’re also dealing with what’s considered a staff — a real serious staffing issue. Over the summer, it was brought to my attention that a couple of my friends, one in May and another one as late as August passed away because of lack of quality care-givers. This was really, really hard on me and I felt compelled to come back and try to do what I can on my own volition and volunteer my services to try to help the disability community with dealing with the direct care staff crisis.
I don’t think it’s any secret that it is a crisis at this point. We are finding that there are individuals that are in apartment complexes that are going without care on some evenings and some weekend, and volunteers are coming into their apartments and helping they out until they can get their shift filled. I know of other individuals who have gone periodically in and out of the hospital or other institutional settings, just to get their staff basically up to par.
Currently the program is huge, it is offering over 40,000 individuals with disabilities, seniors and children alike, as well, to receive these kinds of services at all various levels. When this program started back in 1978, there was just 200 individuals who could only direct their care available for their program and it wasn’t that very difficult to make changes when necessary. However, making changes now make it increasingly difficult.
We have four challenges in front of us today. One is recruiting new personal care assistants. How can we think outside the box and find different ways to attract new people to come into this field? Second is training those personal care assistants. I know a lot of providers provide training but often it’s not adequate enough because we’re so short on care-givers, people are literally getting placed in people’s homes without the true training that they may need.
Reimbursement, that is always an issue but it’s so expensive for the legislature to allocate that money for 40,000 people, or 46 — 43,000 PCA staff in the state. So how do we get at the issue of reimbursement rates? And of course retention, how do we keep those really good personal care assistants that are out there? I have proposed two different — well, there are two different proposals that have been considered but not very deeply. They came out last year and we’re bringing them forward again.
One was recommended by the Governor and that is the issue of overtime pay. The federal rules now require overtime pay for people working over 40 hours a week in this field. Governor Dayton proposed a rate increase in October of 2016 but it was not implemented at the legislature last year. The Governor’s budget should include it in 2017 despite the uncertainty at the federal level. The costs, though, is expensive, it’s $40 million to deal with this issue.
The second issue I’m not quite sure what the cost will be but, basically, what we’re seeing here is those were the most serious disabilities, those that have hand-on care needs like toileting, bathing, dressing, the high hand contact is the ones that are not getting the care the most, and those are the people that I’m appealing to try to help in addressing the personal care shortage. We need to look at a complex personal care level of care to provide reimbursement for these high level needs clients.
We’re looking at clarifying criteria that’s under discussion right now to deal with this, such as helping those with respiratory assistance for those on ventilators — I’m on slide 4, and those who would require more training to demonstrate competency and compliance, to increase the rate — to increase pay for complex care requires, again, funding from the legislature.
The current PCA rate is at 17.12 or somewhere around that particular amount of money and that, it seems like a lot of money but when you give it to a provider, they have to pay unemployment, they have to pay taxes, they have to pay costs for a staffer, looking for new staff. The criminal background studies and all the other additional costs that are associated with providing this. So the bottom line is care-givers are getting anywhere between $10 and $12 an hour for reimbursement, we seems like a fair amount of money but it’s not a lot of money when you think about what a livable wage is in our community.
I was recently informed that in Ramsey County, the cost of a living wage is about $19.20 per hour. So this is an ironic situation that we’re facing, when we can’t even pay personal care assistants a living wage.
The recruitment and training is something that I propose to the Olmstead commission that I would like to explore and I’ve been talking with D.E.E.D. about this, the Department of Employment and Economic Development. Certain ideas that have come up with working with workforce centers, some of the ideas that we’re looking at is opportunity for apprenticeships or job sharing, alongside with an experienced personal care assistant so you set up somebody for success when they come into somebody’s home and they don’t get freaked out, so to speak, and get scared and run away because they don’t know exactly what they’re doing. We want to try to give them additional support so they can enjoy what they do with another person that might be needing this type of care.
We want to connect those interested with those hiring through the workforce centers and increase the training for complex care tasks. Maybe provide scholarships for home care careers while working at a personal care assistant. We’re always looking for more ideas. If you can think of any yourself, let me know or let others know, and we do work with the Minnesota consortium for citizens with disability and Jo at MNCCD, has said she’s willing to take on any questions that you may have and they’ll direct them towards me.
I’m not with any particular organization at this particular time. Like I said, I’ve been retired for a number of years now so I’m doing this on my own and with a couple of peers that have disabilities in the community.
There are other PCA-related issues that I was asked to bring forward. Some of them were brought forward to you earlier so I’ll be very brief on this.
The new PCA program is called CFSS, which is Community First and Service Supports. Now, that’s still pending at the federal level because it’s part of the Affordable Care Act which as we heard from our new president-elect that he is not going to — he may — well, he’s going to repeal the Affordable Care Act so what we don’t know what all of this is going to mean for this new CFSS program which allows more flexibility with the program. Also, it allows self-directed budgets. As was mentioned by the Department of Human Services, they’re looking to increase the number of hours as far as the care-givings program for all. We think that’s going to be very helpful, as well. And stay tuned about how that happens.
And the new Congress and President, we’re concerned that they’re supporting Medicaid block grant. Seems like this comes up every 10 or 15 years and this is the third time that we know about that block grants are going to come up. It’s a wonderful way to bring about flexibility for the states to do something but only with a lot less money that’s attached to it. So that means we’re going to be looking at a serious constraint of additional dollars, if we see block grants coming down the road. We must be concerned about that.
If you need a personal care or you realize — Medicaid services, now is the time to contact your state senator, your state representative, your senator at the federal level, Senator Klobuchar, and Senator Franken, as well as your member of Congress in the State of Minnesota, and let them know how important these programs are to you and for you. And there is a website, it’s www.leg.state.mn.us, and it’s the district finder. That will help you find your lawmaker if you need to find that.
But we need everybody’s own stories. This is all about person-centered care. This is all about person-centered planning, and we cannot realize person-centered planning and person-centered care if we cannot get some of these issues proposed and addressed, especially with the new political environment upon us. I am optimistic. I do believe that there are ways to get this done and I do believe if these programs have the intentions that they intend to be, will be listened to and potentially realized at our respective legislative bodies.
So thank you, again, and go out there and advocate, everybody. Thanks.
Joan: Thanks, Jeff. Really appreciate that. I think the common theme that we are hearing here is about the need for stories on all levels, the reform for the PCA and issues to the workforce shortage, all of it, so we need to start getting our stories.
Jeff: Again, we will be getting sample letters out either through Access Press, how you might want to compose a letter, how you might want to write a letter, what you might want to say to your lawmakers, all of that will be forthcoming and then pay attention to the MNCDD, the Minnesota Consortium for Disabilities, they have good ideas, too.
Joan: Thanks, Jeff, and sounds like you’re out of retirement now.
Jeff: I guess. Except without pay.
Joan: Leili, come on up. You can come up on this end here and we’re doing the round robin of the hot seat here. Great, welcome, Leili, and a hot topic that my agency has worked along with you is the self-driving cars. This is huge because it will give us more independence that we need. So take it away. I’m going to cut your time, too.
Leili: Not a problem.
Joan: Talk fast.
Leili: I’m good at brevity. For those of you who don’t know me, Leili Fatehi, a lawyer, and I’ve worked on different areas of science and technology areas and one of the areas that I’ve been working along with Joan and a few others is in this area of self-drive cars and how to insure the self-drive cars who present the best opportunities to provide transportation and independence for people with disabilities as well as making sure they’re deployed in a way that we don’t further increase gaps in transportation independence.
Last session, we had a piece of legislation that we advocated for called Tim’s bill, transportation for many and that was a bipartisan bill, carried in both chambers of the legislature that called for a task force that would make recommendations to the legislature and to the different relevant agencies on the issue of self-driving cars for people with disability.
It also had a fiscal note in it for doing a demonstration project of self-driving cars. We pretty quickly had to drop that as $5 million was a lot to be asking for last session and perhaps will be even more to be asking for this session.
A bit on the status of self-driving cars right now. People end up being really surprised to hear now near-term the technology is, and what the timeline is. Virtually all of the auto manufacturers right now are working on self-driving car technology and by and large, we see them really very overtly saying that they are no longer in the business of manufacturing cars but, rather, they are now in the business of moving people. And increasingly, we see the auto manufacturers either starting their own mobility services or partnering with new shared mobility services like LYFT or UBER or even partnering with transit authorities, things like that, to create new types of mobility options for people.
My guess is that fully autonomous vehicles will be commercially available within the next three to five years. I think the first instances where we will see the news is in the context of ride-sharing services, potentially with some small pocket of privately-owned vehicles and kind of the luxury markets, but quite frankly, once they are commercially available, it’s — the insurance companies and the liability industry are going to pretty aggressively I think result in wide-spread adoption of self-driving technology which in and of itself can create some equity impacts for those who potentially can’t afford to buy a new self-driving car and may find their insurance rates being comparatively more expensive than they once were.
In terms of the regulatory status of self-driving cars, people are often surprised to hear that there is absolutely nothing that would prevent someone from having their self-driving car — being in a self-driving car and have it drive down any of the streets in the Twin Cities. There’s nothing in the current vehicle codes or legislation that we have now that would prevent that.
About two months ago, the federal government released a federal policy for autonomous vehicles which itself takes a pretty aggressive approach towards promoting the adoption of self-driving vehicles. It essentially sets what the federal standards will be for self-driving vehicles and speaks quite a bit about how the division of authority between the state governments and the federal government should look like.
Now, whether that federal policy is going to change under the new administration, I have never heard more experts respond to questions about something with “We have no idea, we don’t know.” And I kind of share in that sentiment that I don’t really know. It’s going to be an administration that, you know, will not be particularly favorable on regulation but, at the same time, you know, that could go either way when you’re looking at shared mobility versus private car ownership.
So I can speak maybe a little bit more about what we think is going to happen at the state level. State Department of Transportation, including Minnesota’s and different highway authorities really have not, by and large, done a lot on the issue of self-driving cars. Essentially, all they’ve — the majority of things we’ve seen across other states has been instances where D.O.T.s or other bodies or legislators have been setting ‘policies that eliminate regulatory barriers to companies being able to come in and pilot self-driving cars.
We really have not seen legislation or policies coming out of any states that seek to induce demand or drive the trajectory of the technology towards satisfying a particular social need or social good such as providing millions of mobility for people with disabilities and that has largely was what informed the legislation that we pushed for last session in this area.
I really do not see many technological barriers to fully autonomous vehicles being accessible for people with disabilities. I think the biggest challenges are going to be those that are either attitudinal in nature, those that are direct policy in nature, for example, if states continue to require a driver’s license for, say, operating a self-driving car, that could be a huge impediment, or if they require, say, vehicles to have steering wheels even though they’re self-driving, that could be problematic, for example. And I also see a lot of the issues being those of cost, affordability, reliability and really what are the kind of service delivery models that we see these vehicles deployed in.
Is it again single occupancy, privately-owned vehicles that are unaffordable or are these situations where we see the vehicles perhaps used to augment the services provided by, say, a service like Metro Mobility, are we talking about private transportation services for individuals with disabilities that use these kind of technologies.
We kind of need to be looking at all the service delivery models and make decisions about them. So I think state governments to some extent, including Minnesota, need to be making their own investments in self-driving cars but specifically looking at the dimension of for people with disabilities and to some extent if a state like Minnesota is looking to, say, put out RFPs for demonstration project, making those RFPs contingent on a portion of the work being done towards ensuring that we’re maximizing the affordability, the accessibility and the reliability of that transportation for people with disabilities.
I think the state government really begins to need to be accounting for self-driving vehicles in the Olmstead Plan. Cars to some extent really haven’t necessarily fallen under all the auspices of the Olmstead because they were just technological limitations to that being a mode of transportation that people with certain disabilities could take advantage of. When the rules on that change, you could very clearly bring those technologies, bring that mode of transportation I think under the legal auspices of Olmstead.
I think state governments should look at approaches to providing technical assistance as well as funding to local and regional government bodies to figure out how the kind of mobility services they provide could benefit from these kinds of technologies, where they could form partnerships with companies that are pushing self-driving technology as well as to figure out, you know, land use implications and things like that for the technologies.
I would really like to see metro transit looking at the transit impacts and how this technology could be used to soft first-last mile issues that many people with disability face, keeps them from otherwise being able to use the fixed route transit that we have in place.
I think it’s time to look at legislation that precludes discrimination of disability in the licensing of those who are permitted to use autonomous vehicles. That’s going to be a problem if we continue to require people to have some kind of operator’s license or if that legislation changes to prohibit that.
Around I think we also need to begin looking at where there’s opportunity to create subsidy programs for the use of self-driving technology until such time that the prices are able to come down on it. And then finally, I think there’s some areas that we need to look at beyond just the issue of self-driving cars.
We really need to begin looking at what the climate is for shared use mobility to begin with, especially if we think this tech following that’s where it’s going to have the earliest impact.
A lot of you may be aware of the fact that car-to-go just pulled out of the Twin Cities citing the fact that they faced the nation’s highest tax on vehicle rental.
I think that was a major contributing factor, I think there were also probably other policies at the local level that influenced that kind of decision but I think if we’re looking downstream to self-driving cars, we need to begin addressing some of the things that are creating an inhospitable climate for these kinds of services to begin with.
Joan: Great. You did great job.
Leili: I talked fast, huh?
Joan: I did, our poor CART person is trying to keep up with it but, yeah, did you great.
You know, we’re doing questions at the end so we can get our presentations done.
Leili: I have to run to a meeting that is at 3:00.
Joan: I’ll try to answer some of them for you.
Leili: Share my contact information with them. I’m happy to help.
Joan: Minnesota is on the lead for this, nobody is working on this issue of self-driving cars on behalf of people with disabilities so it’s a good thing. So, thanks.
Leili: My pleasure.
Joan: Is Carol Fury here? She’s here.
Talking about agri ability. She’s with Equipalife and she’s going to tell us what’s facing farmers with Minnesota. Welcome.
Carol: Thank you, Joan. Good afternoon.
Perfect segue in technologies, looking at the opportunities for driving cars, cars that drive themselves.
Joan: Maybe there will be tractors driving themselves, huh?
Carol: There will be, they do right now. The cab controls can be set as long as you have a rollover vehicle protection device and you can go right down the road without touching a tractor.
The second following that’s available for people with disabilities is growing at such a pace that no one in the entire world can keep track of all the different available technologies for people with disabilities.
One of the things that assistive technology in Minnesota, we used to be called, now we’re known as Equipalife one of the things we’ve done is to be a partner with the number in delivering services under the Minnesota agory ability program. Which is coming up on its 20th year in Minnesota — 25th year, started in southeast Minnesota by a group called rural rehab technologies and they began the process of looking at what were the barriers of farmers with disabilities who were either injured or had some sort of medical condition that interfered with their ability to continue staying in their field of production agriculture. That includes all of the workers.
Now, when I was listening earlier to a couple of the individuals speaking, I would like to make a come of comments. One individual gave a wonderful story about spend-down. And how we would like to encourage people to keep more of their money, and one of the things that I learned this year is that farmers are bringing in undocumented workers — well, they’re documented, excuse me, let me correct that, they’re coming in through a visa program and being provided a set-aside for overtime because farmers need laborers.
There are individuals with disabilities that given the right technology raised beds and many of the farmers that are using the workers from other countries could easily, easily change their arrangements to raised beds because they are picking things like beans, tomatoes, and other vegetables that need to be selected by hand and that could easily be moved up into the kinds of accessible situations where people with disabilities could easily job share.
So that is my second point.
The PCA training programs, I would like to make one comment that through the use of assistive technology devices, there would be some great advantages in having PCA members of the workforce trained, using some of the technologies that are out there, easily said, videos, some of the old-fashioned techniques where an individual can do the training by themselves and teach the individual worker exactly how they would like things done when they get into a new situation, even if they’re job-sharing.
We provide a job board on our Facebook sites for people who are interested in all kind of work beyond just farming.
The Minnesota agri ability project is one we’ve had our heart and soul in for seven years and produces some outcomes that are incredible. We have had over 200 individuals served through this program, even though the last two years federal funding has ceased to come to Minnesota.
So we have been supported in part and partial by donations from organizations, foundations, private sector and through small dollars that have come through the state.
We are looking this year for the support of the State council on disabilities and the Minnesota consortium of people with disabilities for insertion into the Governor’s budgets of $400,000, 200,000 this year and 200,000 the following year to continue the work of the Minnesota agri ability program which includes new initiatives and they are the rollover protection systems program, which we are — Minnesota is home to the sixth state that has legislation in place for maintaining and creating a program that provides incentives for farmers of all types to put rollover protection bars on tractors that do not currently have them.
And the videos that I’ve seen save lives and that’s a simple technology, it’s adapted to a tractor. We’re asking the legislature to go one step further and to mandate certification on the rollover bar implementation, meaning once they’re applied to a vehicle, they need to be certified by someone who knows what they’re doing.
The second part of it is to work with the new farm bill which was introduced last year and passed, both these bills were passed, to implement an acceptable plan that would be submitted to the 2019 legislature creating a new farm bill since Minnesota does not have a farm bill and has not had one for several years, which means that we have no safety standards in place.
As a result, Minnesota has the third leading cause of injury and occupations, farming, deaths and injury that put people into a position are now being sitting in a chair that many have sat in for many years. Around the room, there could be many people here who have disabilities as a result of simply being involved in day-to-day accident and farming is very dangerous.
So the safety bill is critical that we get back to the work that was in place 20 years ago and put a strong bill into place that requires Minnesotans who are involved in production agriculture to follow a safety standard. This bill will offset a portion of the USDA’s four-year cycle that we have applied for that is due to come out in January of 2017.
The idea is that the partnership between the state and the community project that has done agri ability for the last seven years must continue or it will go away and the farmers would like to remain on the farm or need just a small bit of assistance or great deal of assistance to continue providing food for your table will go away.
We right now have 87,000 individual family owned farms. That does not count the corporate farms. Every time we lose a family farm to the corporate farm, we lose touch with technology, because what’s coming in is a corporate organization that sets aside the standard of any safety, sets aside what assistive technology is and how it could have helped that farmer remain a productive member of the community.
So we’re asking for the support of the groups that are around the table and the Department of Agriculture, which Commissioner Frederickson has given us his support, and we look forward to working at yet another initiative to keep a program strong in Minnesota that we need.
Joan: Great. This is fantastic to hear and I think it’s kind of a new issue for the people with disabilities to be hearing more about, and it’s vital so…
Carol: There are so many jobs available in the field of production agriculture that almost anyone could do and I think the concept of job-sharing which was brought up earlier, several of the issues that were brought to the attention of this group before I sat down, looking at the Olmstead act, the workforce investment — let me get it right, who knows around the table, the new workforce incentives —
Joan: Right. We need to keep moving on so thanks, Carol.
Carol: My cards are up here and I left information up front about what our agenda is. Thank you for taking the time to listen to us today.
Joan: I’m going to have George Shardlow come up here, my new legislative person. David Finley who you know is still with our office but has moved on to another project within my office but George has come back to work with us for this legislative session. And he’s going to really quickly talk about some of the things we have got going at the Council on Disability legislatively.
George: Thank you, Joan, and thanks again to all of you in attendance here and watching online. As Joan said, I’m just going to briefly run through our agenda for the coming session.
First we’re seeking funding to expand our outreach on accessibility. Last session, the legislature was gracious enough to give us funding to go out and engage businesses and other community stakeholders around the state to fund proactive solutions for barrier removal and already we’ve seen just a tremendous response. Folks are excited about this work and so we are keen on continuing it.
Next we have two policy proposals. The first relates to disability parking plates. Currently the statute is written such that once an individual with a disability turns 18, their name must be on the title in order to be eligible for disability plates and so in the case of a care-taker of an adult child, or what have you, with a severe disability, we want to make sure that those families are fully eligible for disability plates, as well.
The second policy proposal involves the state’s statutory language on the State accessibility code. Currently, state buildings built or remodeled after July 1st, 1963, are only required to make accessibility improvements if they undertake a new remodeling project, State statute does not suggest the need for remodeling solely for the purpose of accessibility improvements. Those accessibility improvements are already covered under the Americans with Disabilities Act, that is federal law, so this is not necessarily creating an added regulation, it’s making sure there’s no confusion out there resulting from the discrepancy in the state and federal language.
Finally, we continue to advocate for the creation of a Governor’s task force on self-driving vehicles. We believe that, as you have previously heard, self-driving vehicles have enormous potential to improve the lives of Minnesotans with disabilities and we want to be proactive about anticipating any policy or regulatory changes that need to be made in response to the advent of that technology.
What I’ve outlined thus far are the internal priorities we at MSCOD have identified. However, I want to stress that we are always here as a technical resource for the legislature, other agencies and, above all else, Minnesotans with disabilities and, of course, everyone here. As you’ve heard today, there are numerous issues facing the disability community here in Minnesota. Anything we can do to partner with you and support the work that all of you are doing to make life better for Minnesotans with disabilities, we are ready and he gear to provide that support.
Joan: Good, good. Thanks, George.
We’re going to bring up our final person here and hopefully we’ll have time for some Q and A, some questions, is Rick Cardenas. Rick is sneaking up in the back. Thanks, Rick, for coming, and Rick everybody knows. He’s another person that thinks he’s retired. All these people that think they retire. They never get to retire because our issues never go away, that’s — I don’t know if that’s the good news and bad news.
So Rick is going to talk to us, kind of give us some marching orders, so to speak, and talk about the lay of the land and how things are shaping up here after the elections, so I’m going to let him take it away. And I want to give you just about four minutes, how’s that? I’ll shave you by one.
Rick: No, no, I prepared four minutes and 20 seconds. I don’t know how I’m going to fit into this.
Joan: I know, I’m cruel but…
Rick: I want to give a little history. Right now it seems we’re talking about zero, start engine at zero, no, no, no. Over 55 years ago, I broke my neck, crushed my spinal cord and ended up using a wheelchair. I didn’t know what the services were at that time and fortunately, I had my mother and father and my brother who was younger brother, who provided my — much of my PCA services. However, this was 19 — middle ’60s and my brother got drafted into the war. And unfortunately, he got killed in Vietnam, so I had to try to figure out what to do after that.
And somehow found Ramsey County Nursing Services, which that got me in and had to figure out what sort of services they provided. Eventually I did get an assessment with Ramsey County and, lo and behold, they provided some services that I didn’t know were available. So that’s a long time ago, in the ’60s so they provided nursing services plus PCA services. And they would actually give you a cash grant to buy things like — that you need to fulfill your needed services.
What a concept to give you the cash and a system that would trust and respect you enough to go and allow you to buy the services that you needed.
But then in the ’70s, something happened. We determined statewide, a lot of people are coming to us for services so what are we going to do? So they privatized the system. They privatized the system and the effect of privatization drove those salaries and wages down and nothing that Jeff has spoken about and proposed, like complex cases, just regular services, and the wages took a dive.
They continue to dive today, as Jeff said, so us persons with disabilities became kind of expensive for the system. And one thing to solve that with is probably taxes but as you know, we’re in a tax-cut era. Totally against it.
I’m totally dependent for my total existence, over 50 years, on government services, so my folks could have handled me but unfortunately they had to pass away, and luckily, in Minnesota, we sort of have a humane human services department department that has been linked to past programs that allow persons like me with a disability to continue to exist. We’ve got a legislature that went along with that and also was able to pass legislation that allowed me to continue to exist.
But the demand of persons with disabilities are there and luckily, we have a human rights act, we have ADA and we have the Olmstead implementation program.
But let me — but I have fear that those things may be able to disappear and I want folks to make sure that that there are those things.
So, Minnesota has a history of providing for many people and persons with disabilities are no exception. Let me give you an example. I know of a case right now in Minnesota where an individual who has cancer and has two children that need wheelchairs. Unfortunately, they lived in Texas for many years and these young men are in their 20s and for many years, they’ve been running around on their butts at their. house in Texas because Texas would not provide a wheelchair for them and so they have friends here, so a few years ago, they moved here. They’re in the process of getting a wheelchair, so my point is that Minnesota has services.
However, they’ve come about because we’ve had strong advocates. Remember a few years ago when we were lobbying for dental care? We had those little posters with missing teeth? Well, in many states, what they do to solve that problem is take out all your teeth and give you false teeth, so those false teeth are less money to take care of, so the cost is always the question.
But here in Minnesota, we have Olmstead that’s going to help us to make sure that we keep those teeth in our head, even if we need some help instead of running around with no teeth or getting those false teeth.
So I want us as advocates to keep vigilant on what’s happening at the legislature, at the state and make sure we continue those waivers, MA, EPE, CADI, and hopefully CFSS.
So I want to make sure you’re there, I want to make sure you’re understanding that it’s taken us 50 years to get here, as I can attest to. So let’s not make it go away because then we’ll need another 50 years.
So I want to really urge people to know their legislator, and make sure they have that phone number and their email and call them and say, hey, man, we need a humane Human Services plus a humane legislature.
So thank you.
Joan: Good job, good job. A great way to end, and when Rick came and said he wanted to speak, what do you want to speak on, it was like, whoa. Can you tone it down to a few minutes, we don’t have — because he could have taken two hours and it’s good stuff.
So, questions? We still have some folks in the room if you want to ask questions to Carol Fury, if you have questions on self-driving, I can certainly try to answer those, too.
And we’ve got just a few minutes.
George, some of our issues, does everyone want to get out of here? I think everybody wants to get out of here.
Speaker: In regards to the cost and retention with PCA services, have they looked at going out to some of these tech — the small community colleges offering, like, discounted rates, credits for, you know, certain programs to really try to draw in some of — you know, some of the more qualified people to actually work with these agencies?
It’s — what I’ve run into — I’m a case manager with Washington County and what I’ve run into is there is a big struggle because there’s either language barrier or even the ability, you know, through inadequate training for these people to care for our clients. And I think when you’re looking kind of at the global aspect of it, I’m just wondering, has that part of the market been tapped?
I mean, going in — I know they’re talking about scholarships but I’m just thinking, you know, it’s like ultimately to move on to any type of a nursing career or even if they’re using this as a step to any type of medical profession, it really provides that ground base knowledge that you need to have to provide person-centered planning.
Joan: I’m going to have Jeff Bangsberg jump in.
Jeff: I’m answer this very quickly and that is were starting those discussions right now with the opportunity that I had to speak in front of the subcab net, assistant commissioner — oh, my gosh, from the workforce centers, the workforce initiative, has basically heard us loud and clear, wants us to work with the educational systems.
The Department of Education was there, too, we’re planning on working with not only the workforce centers within each county but also the MnSCU systems and the community colleges and technical colleges and do something similar that’s done with a CNA program, the certified nursing assistant and have a parallel track for personal care assistants to potentially utilize as a career ladder if you will, or career lattice, to advance themselves because the personal care wage is not enough to be money — to be brought in from the federal government to make that an end point.
So, therefore, we need it as a stepping stone, so to speak but, yes, the answer is yes, we are under those discussions right now and any ideas that you might have — you brought forward a good one how do we tap into the other educational facilities to bring them into the process of becoming competent and trained for offering services into the field is critical right now, specially with consumer choice, PCA, which really fits to the person-centered planning aspect which is much more of an individual-based model that would help build an infrastructure for care-gives coming in.
We have to look at this whole personal caring system differently now. It’s too vast and large to try to raise all boats at the same level. We have to pinpoint and to be cuss on specific areas of need and direct those areas with specific training or whatever it might need in order for that to succeed.
That’s the only way I see this happening because the cost is too great. It’s like 1% for every 1%, we’re talking over $10 million to get a 1% rate increase. That equalizes it about five scents, I believe, with that.
Speaker: How do I become more involved?
Jeff: Let’s talk afterwards.
Questions? We’ll take a couple more and then we’ll need to wrap up.
Kim: My name is Kim Pepin, a policy advocate formerly from the north metro, now I live in St. Cloud metro.
So it’s not really a question, it’s more of a request. Could the people that have been in this for a long time mentor the new people? Kind of thinking like a conveyor belt that some people get older or have to retire, there is a lot of new people that want to join but sometimes we feel shunned and the new people are not going to do things perfectly right away but everybody started out somewhere and it could really help bring people together.
Jeff: Are you talking with respect to the PCA program?
Kim: No, the big picture of working together —
Jeff: Disability advocacy movement. Good idea.
Joan: Okay, Carol.
Carol: One quick comment.
Joan: Come up here.
Carol: This is Carol from — I want to stay on the topic of the PCA program and workforce. Just to keep in mind that people can indeed become self-employed and access the dollar amount that is available as a self-employed individual, they can earn the full amount of money that is paid for for the PCA, even though they have to pay for their own insurance, they will come out ahead.
We’ve done the dollars and cents planning with people who have run their own companies through the program, and it come out at about $17 an hour.
Jeff: Another FYI, we’ve also explored the notion of having people with disabilities becoming employed to assist those people with disabilities that are in need of services. We’re talking high-functioning people with either traumatic brain injury or autism on the high end of the spectrum to come in and assist and that’s been done and tried before and we would like to try to formalize that more and we’ve been talking with Vocational Rehabilitation Services to see if they would be willing to experiment with this a little bit.
Again, we can’t get things moving quick should have to get the discussions going. We have to start thinking outside the box to solving the problem and recent legislation was changed just last year that will allow a person with a disability to provide services to another person with a disability.
The only problem is, anybody who’s receiving PCA services cannot provide services to somebody else, which makes sense.
If there is a high-functioning disabled individual, yes, they can now be…
Joan: Final question will be Chris Serres.
Chris: I was just wondering, so many interesting ideas that I heard today and what can be a little bit intimidating is that there are a number of — it’s like this — feels a little bit fragmented. Like is there something that everybody agrees on? Like this idea of the spend-down, the injustice of the current Medicaid system that keeps people in poverty, which it’s supposed to help people live more independently, is that something that your organization supports?
Joan: You know, I think we look at things globally, together, working with the consortium for citizens with disabilities so I think we would look at it from a variety of vantage point because pulling together all the different disability organizations because I think there are some different thoughts and different organizations but at the end of the day, I think the overarching theme is trying to move something forward.
Jeff: Can I respond to that?
That is probably one of the biggest supported items amongst the disability community that has drawn interest and support from the entire disability community, including the provider community because it lessens the burden on them, too. So that is one of the few items but the fiscal note they attached to it, in my opinion S outrage Owsley high.
The cost of implementation, they say is huge, and I don’t believe it’s that much but that’s been an issue all along.
As far as the PCA program, you don’t have a common thread of agreement on how the program should be run so that’s where we run into different points of conflict in some areas.
Speaker: Chris, just to answer, we look at that, the medical assistance reforming that is foundational to Olmstead. I mean, truly, you know, if you’re going to have any kind of choice in independent, you have to have enough income to support it.
It is foundational and I agree with — that it is a top priority for the Minnesota consortium of people with disabilities, which represents many, many advocacy organizations and providers, so I do think that’s kind of one of the uniting issues.
Joan: Final question.
Melinda: I just wanted to let you know, I’m Melinda — with Wellness In The Woods and we are consumers statewide, network around the factors around mental health and wellness, and one of the components that has arisen is conceptually, we put a lot of emphasis on Medicaid, understand it, got it, but not everybody’s eligible for Medicaid in the State of Minnesota and until you hit a certain level of acuity in terms of what you’re dealing with, you’re pretty much on your own.
So I think that part of the challenge is to also be inclusive of any Minnesotan, any Minnesotan dealing with anything like this which could be very tragic and you have a lot of upfront losses that are experienced and you just can’t get back to simply because you do not meet the criteria for Medicaid.
Takes a very long time to be found eligible, you know all that.
So I would really be encouraging you all to think a little bit differently about access so that it’s much more inclusive of any Minnesotan who is faced with these types of, I would say, devastating losses in life to help offset that.
Joan: Great point on which to end on, access for all and thinking differently.
I want to thank everybody for coming. Thank all the speakers.
You know, Rick, I’ve got — I turn into a pumpkin here quickly because it’s going to end here. I don’t have control over this so we can talk afterwards, Rick, and get your questions, but thanks everybody, thank staff and thanks to the speakers and we’ll do this again in another year, so see you January 30 at the legislature.
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DISCLAIMER: This text is being provided in a lightly edited draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. The text may also contain environmental sounds that occurred during the event.