Descriptive transcript

[Video opens with a word cloud slowly appearing on screen with words such as “safety” “employment” “community” “justice” etc.]

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[Video transitions to a title slide “Disability Viewpoints” with an image of a compass.]

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[Video transits to a man sitting at  a table with his arms crossed. A text and photo bar slides in from the right with a headshot of a smiling man. Name underneath the image: “Mark Hughes, Host”.]

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[Video transitions to a woman speaking, with an image and text slide sliding in from the right. It shows a headshot of the woman. Name underneath: “Joan Willshire, Co-Host”.]

[Video transitions to a Zoom chat with a man speaking on the left side window, and an interviewee on the right side window. A text and photo slide temporarily covers the interviewee. The image shows a headshot of the man, with a name underneath: “Nick Wilkie, Co-Host”.]

[Video transitions to Mark speaking.

>> Mark: Hello, I'm Mark Hughes. Welcome to this edition of "Disability Viewpoints." My guest co-host today will be Joan Willshire, and her guest is Alicia Lane, Government Relations Director from the Minnesota Commission of the Deaf, [Deaf]Blind and Hard of Hearing here in Minnesota. My guest is Tina Rucci from the ARC of Minnesota. Welcome, Tina, coming to us by Zoom.

[Video transitions to a Zoom window showing Tina. She speaks. Text across the bottom: “Tina Ricci, Public Policy Director/The ARC of Minnesota”.]

>> Mark: Welcome, good to have you here.

>> Tina: Thanks, Mark. Hi everyone.

>> Mark: Nice to have you here. Tell us a little bit about yourself before we get going.

>> Tina: Sounds good, yeah, hi everyone. I'm Tina Rucci, the Public Policy Director of the ARC Minnesota. I've been with the ARC for just over a year, so this is my second legislative session working with the ARC.

>> Mark: Well, congratulations.

[Video switches back to Mark.]

>> Mark: So, as of the time we're on the air now, we have kind of a different legislature this year. We're three weeks into the session, and the Minnesota Supreme Court has handed down that a quorum is 68 participants or people. And, so, the Republicans are there in session. 

[Video switches to show Tina briefly before returning to Mark.]

>> Mark: The Democrats have chosen not to report for a while, and we don't know because there was a little misunderstanding that the Democrats wanted to decide who was half co-chairs in power and the Republicans kinda decided against that, even though they may have agreed to it at one time, I'm not sure. But, so the Democrats have kind of not decided not to be in the House and so forth right now. So we hope they're negotiating that. So we're kind of at a stalemate or standstill, but I know that the ARC of Minnesota has some great legislation and as the years gone by and you're working on some great stuff. So why don't you tell us about that in the next few minutes?

[Video switches to Tina.]

>> Tina: Yeah, so even though there's a lot of unknowns happening at the legislature right now, we're still poking away with our legislative agenda. We have good allies on both sides of the aisle, in both bodies, that have really always been champions for the disability community. So we're, like I said, we're still making progress. We have a number of legislative priorities that we'll be advancing this year. We are looking at improvements to CDCS, particularly looking at wanting to get rid of that disparity, that 30% disparity- 

[Video shows Mark briefly before returning to Tina.]

>> Mark: Yeah, tell us what CDCS stands for for those that don't know at home.

>> Tina: Thank you, Mark. It's easy to get caught up in- 

>> Mark: Yeah, acronyms.

>> Tina:  Acronyms. (laughs)

[Video shows Mark briefly before returning to Tina.]

>> Mark: No, I do the same thing.

>> Tina: Community-Directed Consumer Supports. So, the goal of the CDCS waiver as opposed to the traditional waiver is that people will get to decide how their services are made up and who they're hiring and that kind of thing.

>> Mark:  Right.

>> Tina: Right Now, the budget for that waiver is 30% less than a traditional waiver. And so we're working on getting that matched up.

>> Mark:  Right, to make it equal.

>> Tina: Mm-hmm. Exactly.

>> Mark: Okay.

>> Tina: Another initiative that we're working on is creating inclusive playgrounds.

>> Mark:  Right.

[Video shows Mark briefly before returning to Tina.]

>> Tina: So we believe strongly that all children should be able to access play spaces equally. It's interesting for me when I have conversations with legislators about inclusive playgrounds, I often learn that not everyone knows that just because a playground is ADA-compliant doesn't mean it's inclusive and accessible.

>> Mark: That's exactly right.

>> Tina: There are some sensory things we can take into consideration and to make sure that all children get to play.

>> Mark: Yeah, and some of the other stuff you're working on?

>> Tina:  So, we're also continuing to work on the elimination of subminimum wage for people with disabilities. Right now, the average person who's working for a subminimum wage or 14(c) job is making around $4 an hour in the state of Minnesota. And we really just want people to be paid equitably.

>> Mark: Right. 

[Video returns to Mark.]

>> Mark: Yeah, when I was in the state council, Walmart, I think it was, had their CEO came up from Chicago and he had a son with ADHD and his son really couldn't work, but he could drive. So, the dad had him drive him back and forth to the airport, which is a big task sometimes, and paid him. But he also believed in putting the able-bodied person and the disabled person right next to each other, having them work as a team and paying all one and the same. And so that has been done, and again, employment lights up my eyes and ears and that's the way it should be done, and I was glad to hear that. 

[Video shows Tina briefly before returning to Mark.]

>> Mark: But I do remember that when I was on the Minnesota State Council that we went to 3M and heard that and it was great. And the CEO was from Chicago, so it started there, and I think that's what should be done, but they don't ask me. But, I just, I think that if a disabled person is being paid $4 an hour, you don't want 'em to get taken advantage of. And 'cause there are some really talented disabled people, not necessarily me, but there are some really talented people out there working that should be paid the minimum wage.

[Video switches to Tina.]

>> Tina: Yeah, I completely agree. One of the things that we think and talk about a lot at the ARC is that everybody has different talents and interests, and if, you know, you find something that sparks those talents and interests in someone, you know, that's the goal, right? Like, we want to be figuring out what everyone, regardless of ability-

>> Mark:  And do it again. 

>> Tina: - Is interested in. And because that's when people really thrive.

[Video switches to Mark.]

>> Mark: Right, I always tell people working is like sleeping. You gotta do it about 1/3 of your life, so you might as well enjoy it. We have about three minutes left. Is there anything that we might have missed that you want to cover?

[Video switches to Tina.]

>> Tina: There's two things that I will cover really quickly that's on our legislative agenda. Elimination of MAEPD premiums. So, that's Medical Assistance for Employed People with Disabilities. Those premiums are ridiculously high and we want to eliminate those so that people with disabilities can access their healthcare at an appropriate cost.

[Video switches to Mark.]

>> Mark:  Do you think you have a good shot at that?

[Video switches to Tina.]

>> Tina:  You know, Representative Hicks is a really good champion for this bill. I don't know what the upcoming structural imbalance, as they call the upcoming deficit. I don't know what that's gonna do for any spending bills, and I do believe that there might be spending attached to this one.

>> Mark: Okay. 

[Video shows Mark briefly before returning to Tina.]

>> Tina: So, we'll see.

>> Mark: And your second?

>> Tuba: The second one is an IEP accessibility bill for parents. So, the IEP process is pretty challenging to access, regardless of ability, but particularly for people with disabilities or parents that don't speak English as their first language or don't use, you know, the written, they have more of a verbal-

[Video shows Mark briefly before returning to Tina.]

>> Mark: That's an Individual Education Plan?

>> Tina: Yep. 

>> Mark:  Is that the one?

[Tina nods.]

[Video switches to Mark.]

>> Mark:  That's an important thing. You can plan your stuff in your education and it'll take you all the way to just about high school. So, it's a really important thing. If you need a hand with that, let me know.

[Video switches to Tina.]

>> Tina: I definitely will. And then the last thing I'll say is we have Capitol Connectors teams. So, that's a group of volunteers who want to be involved in public-policy work. There's a team in each congressional district. My colleague, Gene Martinez, leads those teams, but we work really closely together to make sure that what we're hearing from around the state is being brought up to the Capitol. So, if there's anything that you're interested in working on or that viewers are interested in working on, please let me know.

[Video switches to Mark.]

>> Mark: Yeah, Gene Martinez is a great guy. Been on this show, been around a while.

How do we get a hold of you if we're interested in volunteering for any of that?

[Video switches to Tina.]

>> Tina: So, you can reach me at 612-965-0969, or at my email address, which is tinarucci@arcinnesota.org.

[Text banner showing email address and phone number appears on screen.]

[Video shows Mark briefly before returning to Tina.]

>> Mark: Good, and any last thoughts before we go?

>> Tina: I'm gonna make a plug for Disability Advocacy Day at the Capitol on March 25th. You can stay tuned for some details to follow.

>> Mark:  Sure.

>> Tina: We can follow up on that once the planning gets more underway.

[Video switches to Mark.]

>> Mark:  If you send them over to Jo Erbis, Joanne Erbis, then we get 'em on the community calendar and do that as soon as you can, we'll get 'em on here and we'll probably roll that toward the end credits of the show.

>> Tina: Okay, that sounds great. 

[Video switches back and forth between Tina and Mark.]

>> Mark:  Sounds great? Well, thank you for being here today. Enjoyed having you come on, come on back and see us again.

[Video switches to Tina.]

>> Tina: Sounds good, thanks so much, Mark.

[Video switches to Mark.]

>> Mark: All right, that's Tina Rucci from the ARC of Minnesota and thanks for watching and we'll see you soon, bye now.

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[Video transitions to a slide with text: “Disability Etiquette: Do not touch, pat or grab. No one wants to be touched without consent, including people with disabilities. Do not touch, grab, or guide them or their wheelchair, scooter, or cane without permission.”]

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[Video switches to Joan sitting at a desk with a sign language interpreter sitting next to her. Joan speaks. Text banner below: “Joan Willshire, Host”.]

>> Joan: Well, it is January, 2025, and you know what that means? The Minnesota State Legislature has started. So, we are going to talk today to the Deaf, DeafBlind & Hard of Hearing Commission about some of the upcoming legislative issues and get started this year of 2025 so we can basically see where the disability community is going this upcoming legislative session. With me today is Alicia Lane. She's the Government Relations Director for the Deaf Commission. And, so, welcome.

[Camera pans to the right to show Alicia Lane sitting opposite Joan. Alicia signs while the interpreter voices.]

>> Alicia: Yes, thank you.

[Video switches back to Joan.]

>> Joan: Got a lot to talk about, just when we're talking about the Deaf Commission and, so, welcome. And why don't we start off with talking about you, what you exactly do and, like, what is the Deaf Commission and what do they do? And then we'll get into the juicy details of some of the detailed legislative issues that you want to talk about today.

[Video switches to Alicia. Text banner below: “Alicia Lane, Government Relations Director, Minnesota Commission of the Deaf, DeafBlind, and Hard of Hearing”.]

>> Alicia: Sure, well, thank you so much, Joan. Hi everyone, I'm Alicia Lane.

I'm the Government Relations Director for the Minnesota Commission of the Deaf, DeafBlind & Hard of Hearing. We tend to call it the Commission, which is what we're most widely known as and our work at the Commission, we focus on improving the quality of lives of deaf, deafblind & hard of hearing Minnesotans. And we do this through systems-level change. So, we are the principal advocate for working on a multitude of issues. We serve as advisors to the Governor's office, to the legislature, state administrators, as well as the judicial branch. And we work to make sure that they have the information that they need to develop good policy for Minnesotans who are deaf, deafblind and hard of hearing.

[Video switches briefly to show everyone before returning to Alicia.]

>> Alicia: I, personally, as government relations director, I am basically the person who has to figure out how to make that systems change. Often one of the ways we do this is by talking and working with legislators, also with state leaders about their internal policy use. So that just gives you a little bit of an idea.

[Video switches to Joan.]

>> Joan: Okay, fabulous. And, so, now since you, how long have you been with the Commission, first of all? Maybe I want to start with that.

[Video switches to Alicia.]

>> Alicia:  Sure, I started in April of 2021. That was kind of when everything was still shut down for the pandemic. And so, really, it was a fantastic journey for me to see the transition, you know, from the middle of the shutdown and to now being back in person.

[Video switches to Joan.]

>> Joan: Okay, fabulous. So, but the deaf community and the Deaf Commission, are there key issues you always work on naturally at the legislature?

[Video switches to Alicia.]

>> Alicia: Yeah, so really our primary focus is communication access.

>> Joan:  Right.

>> Alicia: And equitable opportunities.

>> Joan:  Right, okay.

>> Alicia: Often we work on issues that impact K-12 education, as well, and early hearing detection and intervention. 

>> Joan: Right.

>> Alicia: A challenge that faces this community is not having access to language impacts cognitive development, and, so, that is a really big focus of ours.

>> Joan:  For sure.

>> Alicia; We also focus on aging community, especially this legislative session, we're gonna focus even more because there are many seniors that experience hearing loss and we want to make sure that they have equitable access and opportunities.

[Video switches to Joan.]

>> Joan: Sure. So, let's kind of, before we move into this year's session, I want to also revisit last year's session a little bit because I know you've had some good successes in the past. Do you want to bring us up to date on what you did last session that was so successful?

[Video switches to Alicia.]

>> Alicia: Yeah, we, well we do have a long list and so I guess I'll give you just one example of the successes that we had from the last legislative session.

>> Joan: Right.

>> Alicia: So, we had a community member come to us with concerns because they themselves are a deafblind individual and they were struggling to access the information that was on their prescription bottle labels. And they had had some errors where they took the wrong doses because they didn't have access to that information, or accidentally switched medications, and ended up in the hospital with issues and, you know, because they took the wrong medication. So we worked with legislators to develop a bill that would require pharmacies in the state of Minnesota to offer large print and braille labels.

>> Joan: Sure.

>> Alicia: We also partnered with an important community partner, the National Federation of the Blind of Minnesota. They are very knowledgeable on audible labels and those labels are really important for older Minnesotans because many of them are experiencing hearing loss and, excuse me, vision loss, later in life. Meaning that they probably don't know braille and the braille labels wouldn't be accessible to them. So, we were successful in passing that bill. And now, as of this month, all pharmacies are required to provide a list of pharmacies that do have accessible prescription labels in large print and braille already. And then next January, 2026, all pharmacies are going to start offering large print and braille labels. Also, the Minnesota Department of Health is currently preparing a report on what pharmacies currently are doing to address those needs of folks that can't access the labels in braille or large print. And, so, that's one new piece of legislation we were able to push that we are really proud of. I want to also recognize one of our board members, Jessica Eggert, she is a deafblind individual who provided really crucial testimony for this bill. Also, our staff member, Maya Larson, who is also a member of the community, did a lot of work to make this bill happen. 

[Video briefly shows everyone before returning to Alicia.]

>> Alicia: So I actually just came from the Capitol. Today is the first day of the legislative session and there are a lot of things that are really in flux at the Capitol. So, I'm monitoring the political landscape closely and we know that the legislators this year have a really big job to just even pass the budget. So, the Commission has a long history of having bipartisan support for our bills.

>> Joan: Right.

>> Alicia:  And, so, we're going to continue to work with legislators to improve communication access and equal opportunities for our community.

>> Joan:  Sure. Great.

>> Alicia:  We are currently in the process of developing our public policy agenda that I will be presenting to our board very soon. And once the board has heard it and approved it, we will make that available to the public.

>> Joan: Great.

[Video briefly shows everyone before returning to Alicia.]

>> Alicia: And I do want to recognize that this session, there's been a lot of conversation about fraud prevention and there's something that we're keeping our eye on is just really encouraging legislators to keep in mind folks that are impacted by any policy change are the people that actually need the services. We want to make sure that legislators have a strong focus on knowing that they're not creating due barriers for folks in that population that need to access those services.

[Video switches to Joan.]

>> Joan: Right, okay, okay. So, let's continue on the issues then for this session.

[Video switches to Alicia.]

>> Alicia: Sure. So this session, another thing that we're gonna be monitoring is for opportunities to improve aging services for seniors with hearing loss. I want to increase the quality of services and also improve the data collection for students who are deaf, deafblind and hard of hearing. And we also want to encourage the appropriate use of emerging technologies. For example, artificial intelligence, AI, telehealth and video remote interpreting.

[Video switches to Joan.]

>> Joan: Sure. So why don't you continue on more of your issues here, 'cause I know you've got plenty to talk about here. So, have we missed any here that you want to bring up? Or where are we at with your long list of issues that you're working on?

[Video switches to Alicia.]

>> Alicia:  Sure, so one thing that people maybe haven't realized that we do is that we do a lot of monitoring. And what I mean by monitoring is bills that are introduced by other entities or other folks that would have a direct impact on our community or would disproportionately impact our communities.

>> Joan: Right.

>> Alicia: So we try to just keep an eye out for those and monitor and meet with folks to have those kinds of conversations. We want to have good policy passed. And so that's why we try to monitor. An example of that for last year, and that's going to still be ongoing, I'm still working on, has to do with the READ Act. And, so, we know that that will impact children all over the state of Minnesota. It's a law that sets a new requirements for literacy goals to be improved in the state. And this will, like I said, impact all students in the state of Minnesota. And there were new requirements for training, for the trainings of the instructors, the teachers and the curriculum, and the screening of children, potentially who could be impacted by their reading.

>> Joan: Okay.

>> Alicia: So the law was originally passed in 2023, the READ Act, and there was some language that was found that was not inclusive of deaf, deafblind and hard of hearing children. And it focused on sound-based learning approaches. And for, of course, deaf, deafblind and hard of hearing children, they often have to use different approaches to learning how to read rather than sound-based approaches. So we worked closely with legislators last year in the passing of the Amendment of the READ Act to incorporate a working group that would take a closer look at those requirements and how they could update some of the language to be more inclusive of folks that use sign language and not just spoken language. And so that work is ongoing. And the work group just finished their work and I think the report is going to be released soon. And so that's exciting. We, you know, to my knowledge, we are the first state in the country to pass the READ Act and have language specifically for deaf, deafblind and hard of hearing students. Other states have a READ Act, but they don't have specific language for how to teach those deaf, deafblind and hard of hearing kiddos. So that's something that we're very proud of in that law.

[Video switches to Joan.]

>> Joan: That's fantastic. Right. So it sounds like you do try to follow some national trends within the deaf community.

[Video switches to Alicia.]

>> Alicia:  Definitely, definitely. Yeah, we're always looking around at other states and to see what they've passed and to see if it would be a good fit for us here in Minnesota. And to be honest, there are a lot of states that look to us in Minnesota. We quite often are the first ones to pass a lot of legislation. So, we are the first state in the country to require screening for cCMV, congenital cytomegalovirus. And so that's for babies. That screening is now in the birth screenings that happen at the hospital. And the reason that that's so important is because babies that are born with cCMV, they often experience hearing loss later in life. It shows up usually about one or two. And, so, then that means that the hearing screening at birth shows up just fine. It turns out the results are normal. And then at one or two they overlook the hearing loss that happens. And, so, now requiring the cCMV screening for all babies, we're able to catch and monitor those kiddos, those babies, excuse me, for hearing loss so that they can get the support services quicker and they aren't overlooked in the system.

>> Joan:  Fabulous, fabulous.

>> Alicia; Yeah, and so, like I said, we were the first in the state and we were the first in the country to have that, so it's very exciting.

[Video switches to Joan.]

>> Joan: Now let's touch briefly here before we need to run on how you would like your constituents within the deaf community to respond to issues. Who do they need to contact at the Commission? What would you like them to message, talk to the legislators? So, let's talk briefly about that before we need to wrap up.

[Video switches to Alicia.]

>> Alicia:  So for our constituents, deaf, deafblind and hard of hearing Minnesotans, we offer multiple ways for them to contact us. One of the ways is obviously through our website, they can also contact any of the staff members. You can contact me directly or any of us really. And it's all on the website there. We also have a newsletter that folks can subscribe to. And in that newsletter we share periodic announcements about info sessions that we provide, town hall meetings, they can come to the board meetings. We share about when the board meetings are, people can come and share public comments. We love when they talk with their legislators, as you mentioned, we encourage folks to talk with us, too, so we can provide support to them before they go. If they, of course, feel comfortable going directly, that's just fine, but, it's great, it helps all of us when people have better relationships with their legislators.

>> Joan: What is your day at the Capitol?

>> Alicia: It is going to be in March. It is on March 5th. Yes, so we'll have a rally on March 5th at the Capitol.

[Video briefly shows everyone before it switches to Joan.]

>> Joan: Great, those are always fantastic days for anyone to come to the Capitol and talk about their issues. So, that's great to know. Well, I know we're getting close to the end here. So, what types of last final messages would you like to give out to the community and to everyone to know about the Deaf Commission and the deaf issues?

[Video switches to Alicia.]

>> Alicia: Well, I would like for our community to know that we are showing up for them and I want them to show up, too. Legislators have a lot on their plate this session. There might be a lot of disagreement in there, at the Capitol, but we're gonna be there and we're gonna be visible and we're going to remind them that we're still here and we are still an important part of the community and we're going to be there.

[Video switches to Joan.]

>> Joan: Great, and we look forward to hearing all the successes and great things that the Commission's gonna do. Great, again, thanks for coming in and we're gonna be right back after these messages.

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[Video transitions to a text slide: “Disability Etiquette: Speak directly to the person with a disability. Also, remember that most people, including those with disabilities, would rather not discuss their bodies or medical history with people they just met.”]

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[Video transitions to Mark.]

>> Mark:  I want to thank Joan Willshire and Alicia Lane, Government Relations Director for the Minnesota Commission of the Deaf, [Deaf]Blind and Hard of Hearing. And this is Mark Hughes. We'll see you again next time on "Disability Viewpoints." I want to remind people before we go, the Osman Shrine Circus is coming up, so we'll hear from them on the next show. The Circus comes in March, so you'll see some of those guys from Osman Shrine coming up on our next show. So please stay tuned, keep watching "Disability Viewpoints" and thanks to the folks at SPNN for having us here and we enjoy it. We'll see you soon. I'm Mark Hughes for the entire team, thanks for watching and we'll see you soon, bye now.

[Video transitions to text slide: “Hosts: Mark Hughes, Joan Willshire. Guests: Tina Rucci, Public Policy Director, The ARC Minnesota; Alicia Lane, Government Relations Director, Minnesota Commission of the Deaf, DeafBlind, and Hard of Hearing”]

[New text slide: “Guest Coordinator, Jo Erbes. For SPNN: Director: Terry Kayser, Phd.; Producer: Steve Brunsberg. Audio: Berthie Piorek. Executive Director: Bonnie Schumacher.”]

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