LIGHTLY EDITED FILE

   Minnesota Consortium for Citizens with Disabilities

             Virtual Tuesdays at the Capitol

                    January 12, 2021

                    9:45 - 10:40 a.m.

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 >> Jillian: Good morning, everyone.

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 I'm Jillian Nelson, and I'm here to welcome you to

 Minnesota Consortium for Citizens with Disabilities.

 Tuesday at the virtual Capitol.

 This week our program is sponsored by The Autism

 Society of Minnesota.

 I'm from The Autism Society of Minnesota.

 I'm our community and resource and policy advocate.

 And I'm also an autistic adult, and this is one of my

 favorite events every single week.

 With me today is also Paul D'Arco, he is our wonderful

 Board president and a fantastic father to a young adult

 on the spectrum.

 And I would like to actually turn it over to Paul to

 just give you a little intro about AuSM and say a

 couple words.

 >> Paul: Well, thank you, Jillian.

 Thank you, everyone, for having me.

 I want to thank CCD and all the extended advocacy

 community for, you know, your great work in 2020.

 It was an interesting year, but I think it's clear that

 the session and what you all accomplished was a success

 and really important, in particular, for the autism

 community, particularly the law enforcement training,

 autism training initiative, which I think is going to

 make -- you know, that's a big deal for our community

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 and for law enforcement as well.

 So I actually talked to this group about nine months

 ago, it was in the spring of 2020, and just after the

 beginning of the pandemic, and we talked a lot about

 what AuSM is doing or was doing at the time, what we

 intended to do to support our community during the

 pandemic.

 And at that point no one really could have anticipated

 what happened in 2020, you know.

 We went through these waves and surges of virus.

 I think when we talked last, we were still planning on

 having camp programs last summer and, you know, it's

 hard to believe that obviously everything got canceled.

 And the year 2020 turned in a different direction on

 Memorial Day with the killing of George Floyd and then

 Breonna Taylor and Jacob Blake.

 And those things fundamentally changed everything about

 AuSM and what we were doing and focusing on last

 year.

 We had the most important election in our history, and

 then we had a set of conspiracy theories and lies and

 insurrection, you know, fueled by our leaders and,

 unfortunately, conducted by our neighbors.

 So it was quite a year.

 We, as an organization, at AuSM, had a challenging

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 year on a number of dimensions.

 We canceled many programs.

 We transitioned to telehealth.

 We went virtual on virtually every program and service

 that we offered to our community.

 But I think we really did continue to focus on how

 could we best support the autism community and through

 a lot of great work that Jillian and the rest of our

 staff did, we, you know, we really focused on how we

 could help autistic individuals and their families get

 through the pandemic and through the social and racial

 turmoil that was happening all year.

 We focused on keeping our staff safe.

 It was, you know, a transition to work from home, and I

 think most importantly we focused on the sustainability

 of AuSM.

 You know that -- you may know that this is AuSM's

 50th year.

 You can see there, founded in 1971.

 It was a small group of people that created something

 great, and this organization has grown and changed, and

 I'm so proud to be a part of it.

 And I know that as we celebrate this 50th year with

 all of your support, we will have another great year

 and we're making this organization even better.

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 But last year was -- last year was interesting.

 We lost a significant percentage of our revenue, as you

 would imagine.

 We had to cut expenses across the board, including

 losing a number of our staff, our family.

 We sought every available resource that we could find

 to support us financially.

 And we're a lot smaller than we were a year ago.

 We're more focused, but I think we're even more

 committed to delivering our mission and focusing on the

 things that we can do with the resources that we have.

 And advocacy is still, you know, our primary mission, I

 guess, I would say.

 We do a lot of things, as you know, in terms of

 education and counseling and consulting and a whole

 variety of other programs for our community.

 But our primary mission is one of advocacy.

 So, again, I want to thank you for your support on kind

 of our advocacy agenda.

 I know Jillian is going to take you through our agenda

 in a little bit more detail here, but I did want to

 just talk for a minute about kind of our priorities as

 a board for 2021 at the higher level and then just,

 again, just sort of close with a thank you.

 So we really have four priorities for AuSM in 2021.

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 The first is to continue our transformation, everything

 we're doing is different, everything is more focused.

 So there's a lot of things that we can't do and there's

 a few new things that we want to do.

 So transforming in light of our new reality due to the

 pandemic and the resources that we have, that's number

 one.

 The second priority for me and our board is inclusion

 and equity and access, really, what can we do better to

 serve additional communities, BIPOC communities, what

 can we do better internally to be a learning

 organization, to improve our own diversity and equity

 and inclusion behaviors as an organization.

 Obviously the third priority is financial

 sustainability.

 We still have a significant shortfall and we're working

 to re-engineer our financial structure, our financial

 processes, our financial systems and focusing on new

 development and new fund-raising opportunities.

 But, really, the fourth and most important priority for

 2021 for us is to continue to support our community, to

 be there for them, be their first call, their first

 resource and help them get through their financial

 constraints, their pandemic and health, you know,

 issues, their mental health issues that all of us are

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 working through and really just support them with the

 programs and services that they need.

 So, again, I'll just close with thank you for last year

 for the advocacy support.

 Thank you for, I know, continuing to support our agenda

 this year.

 This year, it's hard to believe the environment you all

 are working in.

 It's hard to believe we can have a more fractured and

 more partisan legislature than we've ever had.

 Listened to the Governor yesterday and know we have a

 lot of work to do as a organization, as a community.

 But I do think, you know, we do have a strong leader in

 our state.

 We have strong advocacy community.

 We have really a compassionate state, right, our

 people, our community, everyone, I think, will come

 together as we wrestle with both the racial challenges,

 as well as our pandemic.

 But our priorities, you know, include law enforcement

 for this year.

 That's a critical initiative for us.

 So I know as we work through the session this year, and

 you try to craft a budget for our state that that will

 be a big part of it.

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 So I'm optimistic.

 You know, we have a new president, we have a new

 vaccine, and hopefully things will get better as we

 move through this year.

 So thank you again.

 And let's have a good year together and, you know, of

 course, let Jillian and Elly and Jean, our strong team,

 advocacy team, know of anything we can do to support

 the broader disability community.

 So thank you.

 And I'll turn it back to Jillian.

 >> Jillian: Thank you so much, Paul, for sharing those

 great words with us.

 I'm going to kick us off.

 We're going to do a group activity.

 We were going to break into groups, but we are a small

 group, so I would like to just kind of open the floor

 to take a few minutes to answer this question.

 How do you define accessibility?

 Anyone at all.

 I promise, guys, there's no right or wrong answer.

 I'm just looking to hear what everyone else thinks

 about what makes our world accessible.

 Jo, I see you came off mute.

 >> Jo: I unmuted, Jillian.

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 I'll take a stab at it.

 I think accessibility means that people, all people

 have access to all services and products.

 I think one of the big things that we've all struggled

 with with accessibility and the virtual network is how

 do we make these virtual meetings accessible to

 everyone.

 >> Jillian: Anyone else?

 Vicki, Paul, Bridget?

 >> Thank you, Martha.

 I'm Sonia, and on behalf of the academy of clinician

 scholars and the co-sponsored event with the school of

 medicine.

 >> Jillian: Do you want to add to anything to what is

 your definition of accessibility?

 >> Vicki: Hi, this is Vicki.

 I'll just add on to what Jo said.

 It's also that all people have the ability to be

 anywhere that they want to be.

 You know, whether that's a building or a mode of

 transportation or whatever, that they can get to where

 they want to be.

 I also like the term "visitability," that people have

 the ability to visit wherever they would like to go and

 not have any barriers to doing that.

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 >> Jillian: These are all really great ideas.

 So that's going to lead us into kind of our talk.

 The Autism Society 2021 public policy agenda this year,

 it is all about accessibility, folks.

 AuSM is raring into the 2021 legislative session with

 the largest accessibility package AuSM has ever

 carried.

 We are proposing eight different bills that are going

 to package together or possibly separate bills that are

 all focused on different areas of accessibility.

 Minnesota has always been a leader in accessibility.

 Unfortunately, in most conversations regarding

 accessibility, a lot of the conversation centers around

 physical access to spaces.

 So we talk a lot about ramps and we talk a lot about

 parking spaces and we talk about bathrooms and we talk

 about Braille and we talk about interpreters and

 captioning, and these are all really really important

 things for accessibility.

 And I don't think we need to do away with any of those

 things, in fact, I think we need to continue to

 increase those things.

 But there are also a number of people in Minnesota, a

 very very large number of people in Minnesota that are

 living with disabilities that are not as visible or as

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 apparent that also have accessibility needs that aren't

 as visible or apparent.

 So what we've tried to do is to put together a package

 of bills that's really going to focus on accessibility

 for people with neurological disorders, people with

 sensory processing challenges, and people with

 intellectual disabilities so that we can start having a

 broader conversation throughout our state about what

 accessibility looks like and what it means to be

 accessible beyond those physical access needs.

 So what I'm going to do for the next about 20 minutes

 is I'm going to kind of walk you through the bills that

 we're working on.

 If you have questions at any time, pipe in, this is a

 small group, so I'm happy to take feedback or to answer

 any questions.

 Our first bill is one that's very very close to my

 heart, and this one, it makes me so happy.

 We are working with our Representative to draft a bill

 that is going to outline requirements for educators to

 accommodate parents with disabilities in the IEP

 process.

 And this is going to allow better access for special

 education for families with multiple generations of

 disabilities.

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 This is something that is actually covered under the

 ADA, but, unfortunately, even though it's covered under

 the ADA, the ADA only offers specific guidance in

 accessibility for things like physical access, like how

 wide a door frame needs to be.

 And, so, what we've seen and other organizations have

 seen is parents with disabilities asking for

 accommodations and schools coming back and saying, oh,

 well, we're ADA compliant, we have a restroom, our

 doors are all the appropriate, or saying that they

 don't have a legal obligation to provide

 accommodations.

 And because these things aren't necessarily clearly

 outlined in the ADA, other than if someone with a

 disability has the right to a reasonable accommodation,

 it puts the responsibility of people with disabilities

 to advocate for themselves and sometimes to have to

 fight to get a reasonable accommodation.

 So the special education bill really puts a process in

 place and an expectation in place for the school

 systems to say, if a parent requests an accommodation,

 this is how you are supposed to handle it.

 The bill is designed to go through the process that a

 parent has to request an accommodation, like who they

 can ask, how long the school has to respond to that

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 request for an accommodation, as well as documentation

 guidelines for that to protect parent privacy and to

 not put undue hardship on a parent to establish proof

 of a disability.

 And all of this is supported by the ADA.

 We're just offering some very very specific language

 and some specific guidance to help schools facilitate

 this more effectively.

 Any questions about this bill before we go on?

 Okey-doke.

 Our second bill is a sensory-friendly grant

 appropriation.

 And this is actually a reintroduction from the 2020

 legislative session.

 We had come forward asking for a grant appropriation, I

 believe it was $250,000 over two different years, for

 sensory-friendly projects for public access spaces.

 So this would include like state buildings, county

 buildings, city buildings, federal buildings.

 We're also looking at how that -- any building, really,

 that has public access, you can be there without

 necessarily being, like, a customer, a paying customer.

 So this gave several different options for applicants

 to use that money, whether it was doing infrastructure

 changes to make their buildings more sensory friendly,

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 whether it was creating a sensory-friendly room or

 sensory-friendly kits that could be used while someone

 is in that space or offering quiet time or extended

 hours for people that might require sensory supports to

 access the programs offered.

 We got some good traction on that bill but COVID kind

 of slowed that down, so we're hoping that that, in

 addition with some of these other things, will kind of

 pick up and help change some of the spaces in the state

 of Minnesota.

 Our third bill, this one makes me -- I actually, you

 guys, I'm not even going to lie, I cried when I read

 the language when we got it back from the reviser's

 office.

 This is a bill that's going to amend permit

 requirements for large events throughout the state to

 include requirements to provide sensory-friendly space

 or accommodations for any public event that includes

 more than 1,000 participants.

 One of the things that people don't necessarily know

 that AuSM does, we do a lot of sensory-friendly

 spaces for a lot of different events.

 And we work with a lot of organizations throughout the

 state to create sensory-friendly access.

 Like we've worked with Minnesota Wild and the Twins and

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 the Timberwolves.

 We've also worked with places like Guthrie and

 Children's Theatre and many many more.

 And it's always fantastic when someone steps up and

 says -- oh, and also Twin Cities Pride Festival -- when

 someone steps up and says, we want to make this sensory

 friendly, but accessibility should be a right, not a

 privilege.

 So we believe very strongly that any event that is out

 there for public -- for the public to attend should be

 accessible for all people.

 There are already guidelines in place regarding things

 like having accessible bathrooms, accessible outhouses

 in these spaces.

 There's rules about how much security they have to

 provide based on the number of participants expected to

 attend.

 So all we're asking is that if an event is expected to

 reach a certain size that that place is also

 responsible for providing sensory-friendly

 accommodations so that it is accessible for all people

 with disabilities.

 Do we have any questions?

 This one, you guys, it's so close to my heart.

 Like I read it, like, the list in there of all the

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 things that are considered events in Minnesota,

 thinking about all the things that as an autistic

 person have been really really hard for me to attend in

 the past and thinking about how many doors this will

 open up.

 Not just for me but for other families or people with

 anxiety, for so many people that we're going make all

 of the wonderful events and all of the wonderful

 celebrations that we have here in Minnesota accessible

 for everyone.

 Like it just made my heart so happy.

 I see Paul smiling over there.

 I'm sure there's many events you didn't get to go to

 when your son was young because of exactly this.

 >> Paul: We, in particular, always took our son to the

 Minnesota Orchestra and they've done a wonderful job of

 having sensory-friendly events.

 Y'all know how tough it is to go to the orchestra and

 sit still and be quiet and listen to the music, but

 it's really fun to see a number of autistic children

 and adults in the audience enjoying the music and, you

 know, dancing in the aisles, basically, or whatever --

 whatever they needed to do to help their sensory

 accessibility of it.

 So we do that all the time and love every event.

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 >> Jillian: And we want every single event in Minnesota

 that's over 1,000 people to have that same experience.

 Whether it's the Irish fair or the State Fair or all of

 the millions -- I shouldn't say millions -- but all of

 the numerous carnivals that take place throughout

 Minnesota, celebrating different communities, we want

 all of those communities to be inclusive and to provide

 appropriate accommodations for all people.

 Our fourth bill is a courtroom accessibility bill.

 We're looking at shaping some legislation that will

 require accommodations for witnesses, jurors, and other

 participants with disabilities who need support.

 Right now there are ADA coordinators within all court

 systems, but how that's accessed and how that

 information is given to people isn't necessarily

 accessible or necessarily extends to all people

 participating.

 So the disability accommodations within the court

 system might apply to a plaintiff or a defendant but

 not necessarily a witness or a juror.

 And some of the processes that you go through in the

 court system, such as like a deposition or a jury duty,

 those things aren't always accessible without some

 supports.

 So we want to close that gap and make our judicial

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 system and the process of going through court, the

 court system, a little bit more accessible to create

 some equity for people with disabilities in the

 aftermath of criminal justice or in the civil

 protective area.

 Do we have any questions about the last two bills?

 Okay.

 We'll keep goin'.

 Number 5 is a plain language bill.

 This is a bill that's going to require that all

 documents related to rights and responsibilities of

 people with disabilities will have to be provided in

 plain language and also influence a wider spread law

 that will require that any document that can be

 requested in another language also has to be made

 available in plain language.

 So what that means is like right now there's a lot of

 places in law that say that people with disabilities

 have to be given their rights and responsibilities, but

 there's not -- in all of those places there's not

 guidelines that say that they have to be given their

 rights and responsibilities in an accessible format.

 Guardianship is a fantastic example.

 It says that everyone has to be given their rights

 under guardianship like once a year at a meeting, but

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 most people are given that with the same way it's

 written in our legislative statute.

 The rights and responsibilities for someone under

 guardianship in our Minnesota statute is very very

 confusing.

 I do this for a living, and the first time I read it, I

 had to read it four times to understand it.

 And I read statute all day every day.

 So that's not necessarily accessible for a person with

 a significant disability or a person with a learning

 disability or a person with processing delays.

 So we want to make sure that anywhere that someone with

 a disability is being given documentation of what their

 rights are, and also what their responsibilities are,

 that that's being provided in an accessible way using

 plain language.

 And also that the other relationships that people with

 disabilities form in our communities are also

 accessible through plain language.

 I don't know about you, but has anyone in here ever

 read their cell phone contract?

 I would really really like -- I can request my cell

 phone contract in Spanish, I should also be able to

 request my cell phone contract in plain language for

 accessibility.

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 If people with disabilities are moving -- if we're

 moving towards people with disabilities living

 independently within our community and making their own

 decisions and directing their own care, then the things

 that they need to make informed decisions, such as

 documents in plain language related to things like

 contracts, then that's an accessibility thing.

 We can't bar people from information in an accessible

 way and continue to call ourselves an inclusive

 society.

 Number 6 -- I think I'm on number 6.

 I can't actually see the top of my screen.

 Number 6 is a county and state services accessibility

 investigative work group.

 We hear over and over at The Autism Society in our

 information resource department, which is also me,

 about people struggling to navigate the disability

 services in the community.

 And actually this year during COVID, it was the first

 time I personally applied for disability services.

 The process to receive disability services is not

 accessible.

 So we want to create a work group of community

 stakeholders and departmental members that's focused on

 ensuring that all county and state disability services

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 are accessible.

 And this group will analyze the accessibility of

 navigation for people with disabilities accessing

 services independently or parents with disabilities

 seeking assistance for their children.

 I said at some point during applying for Medical

 Assistance for Employed People with Disabilities that

 it was easier to pass a police reform legislation than

 it was to open an MAEPD application.

 And the reality is it shouldn't be easier to change a

 law than to apply for Medical Assistance.

 That's not accessibility.

 So we really want to bring the whole group together in

 a legislative investigative work group so that we can

 really figure out where the deficits are, where the

 challenges are so we can figure out and work with

 legislators to make an informed plan to make disability

 services a more accessible process for people with

 disabilities.

 The seventh bill is an emergency shelter accessibility

 bill.

 This is going to be legislation that will create

 specific guidelines for equitable access to homeless

 and domestic violence shelters for individuals with

 neurological and intellectual disabilities.

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 This bill is well into the drafting process right now

 and it's a lot about just making sure that homeless

 shelters and domestic violence shelters have plans in

 place that there's regular training and, most

 importantly, that the people that are working, whether

 it's staff or volunteers, are very informed about what

 that process is for an individual to request

 accommodations when accessing shelter services.

 We know that an alarming number of people who are

 homeless are homeless because of disabilities and lack

 of services.

 We know that a large number of women who are in

 domestic violence shelters are women with disabilities

 because of that increased vulnerability.

 So we really want to close the gaps for people with

 disabilities to be able to access those services that

 can help them get into programs that can stablize them

 and help them do better long term.

 And number 8 is a legislative process accessibility

 work group.

 This is a work group that's going to bring together

 stakeholders to talk about the in-person requirement to

 participate in the legislative process.

 COVID has brought about a unique thing that in some

 ways the legislative process has become more

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 accessible.

 You no longer have to go find a parking spot and sit in

 a hearing room for eight hours waiting for your bill to

 be heard.

 You don't have to drive across the state if you're from

 greater Minnesota, you can tune in in your living room,

 monitor a floor hearing, attend a legislative hearing,

 you can give testimony from your own home.

 And we found ways to do this because we didn't have a

 choice during COVID.

 But what if we were able to take these same things that

 we've done to survive during COVID and made them a part

 of our greater legislative landscape to make the

 legislative process more accessible.

 Not just for people with disabilities but people in

 greater Minnesota, people that don't have the means to

 take a whole day off of work to spend the whole day at

 the Capitol waiting for their bill to be heard.

 What if people could testify virtually?

 What if people could attend more things virtually so

 that they were able to be involved without having to

 have the privilege of being able to be in the Capitol

 building?

 So that is the overview of our very large accessibility

 package.

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 We're very honored and privileged that the CCD has

 chosen this as a tier 1 priority for this year, so we

 have a lot of support to make these things happen and

 we're really hopeful for how this is going to impact

 not just the autism community but the greater

 disability community and the greater Minnesota as a

 whole that we firmly believe that changing the face of

 accessibility in Minnesota isn't going to benefit just

 one community, it's going make everyone better because

 a lot of these things are Universal Design that will

 make things much more smooth for an immeasurable number

 of people in Minnesota.

 So I'm opening the floor.

 We have about 12 minutes left.

 If anyone has any questions.

 >> Paul: I just wanted to add one quick comment.

 Jillian, I really appreciate the focus on accessibility

 across the board.

 And I just wanted to emphasize the disparities in

 access and accessibility with BIPOC communities and

 that that's a critical part of all of these

 initiatives, but, in particular, the ones that Jillian

 pointed out, like access to services and so forth and

 plain language and all these things are critical --

 critical that we keep in mind the equity question in

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 each of these bills.

 And there are many reasons for those disparities and,

 you know, they're difficult to address in many cases,

 but that has to be number one on our priority list.

 >> Jillian: That, Paul, is actually very purposeful,

 the advocacy committees came together and the list of

 things we could change accessibilitywise, it could go

 on and on and on for days.

 If I had put everything that could be fixed into one

 package, we'd have like a 200-bill package.

 And I can't run a 200-bill package, guys, so we really

 sat back and we looked at in prioritizing what

 accessibility things we wanted to tackle first.

 We looked at what was going to not just serve the

 greater good but also what things would make a marked

 improvement towards closing the gap caused by systemic

 racism and inequity.

 So that if we can bring people from all different

 groups that have experienced marginalization and People

 of Color into our community in a more accessible way

 that that was where we needed to focus on accessibility

 first, that all accessibility matters, but we wanted to

 bring -- we wanted to create equity and bring people

 that have been held down by system disparity much

 longer and help bring them forward as quickly as

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 possible instead of putting those things on the back

 burner.

 So we're very pleased, Jean Bender and I are very

 pleased with this package and we have very high hopes

 for it and we're hopeful that even if all the bills

 don't pass in one session that the fact of creating a

 broader conversation about accessibility and having

 people really look at the dynamics of accessibility

 beyond what we typically talk about, that is also a big

 point.

 And who doesn't want a quiet space at the State Fair,

 right?

 >> Paul: I just want a State Fair this year.

 >> Jillian: Right.

 When they sent the language back to us for the events

 bill, the implementation date that it would happen

 would go into effect I believe it was like July 21,

 2022.

 And my response was, perfect, it will be there just in

 time for most likely the next in-person State Fair.

 So...

 >> Bridget: If there aren't any questions, thank you so

 much, Jillian and Paul, thank you so much for joining

 us.

 MNCCD works very closely with AuSM all the time so

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 we're very grateful to have this on our legislative

 agenda for this year.

 It's a pretty big deal.

 >> I just want to thank you for all your work on this.

 Jillian, you've put in a ton of time, as well as

 AuSM, and it's such an important bill and we just

 hope it goes someplace this year because it certainly

 deserves to.

 It will help so many people.

 So thank you.

 >> Jillian: Yeah, and this is definitely a long-term

 plan.

 Like me and Jean have talked through that we'll keep

 pushing the accessibility, as things pass, as smaller

 pieces pass, we'll add in new accessibility goals.

 And hopefully that this can set a precedence nationwide

 to really start some national conversations about what

 accessibility looks like and how we create

 accessibility throughout our country.

 Not just Minnesota.

 We're just trying to set the precedent.

 And that's been a thing, like in drafting the language,

 the reviser's office keeps calling us and saying, well,

 what other states have passed this, like, is there

 model legislation, and me and Jean keep responding,

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 like, no, this is the first bill of its kind in the

 nation.

 And they're, like, oh, okay.

 So, it's been -- it's really exciting to be a part of a

 team that is taking on radical disability change in

 such an innovative way, but also in such a way that

 none of this is crazy.

 None of this is outlandish, like, oh, well, that's

 completely unreasonable, why would we do that?

 It's all very common sense if you think back and think

 about it.

 So we're hoping to see some solid progress.

 >> Bridget: Well, thanks again.

 I think if there's nothing else, we can wrap up a

 little early today.

 We'll be back next week at 10:00 as well.

 >> Thank you.

 >> Bridget: Hope to see you guys there.

 Thank you, Paul.

 >> Paul: You're welcome.

 Thanks.

 >> Jillian: Thanks, everyone.



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