LIGHTLY EDITED FILE

            MNCCD - Tuesdays at the Capitol

                    April 14th, 2020

   Minnesota Consortium for Citizens with Disabilities

                         Remote

              9:45 a.m. - 11:00 a.m. (CDT)

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>> Jeff: It was basically part of the governor's

address, and he was talking about health care workers

can now ride Metro Mobility if they call and schedule a

ride to get to their hospital or to their clinic.

It's a taxi cab service for them.

But what I'm trying to figure out is if personal care

assistants are able to take that service too, because

there are many PCAs who rely on Metropolitan Transit in

general to get to their clients' homes.

So it was just a general question.

>> Heidi: No, that's a good thing to look into.

And also we need to look into not abusing it.

>> Jeff: And they are letting their local lawmakers

know that we are in a particular period of crisis.

We were before this pandemic hit.

And now we're dealing with even more of a crisis.

So again, we can't thank you enough for all of your

support.

>> Senator Relph: Well, as I say, it's important.

This is a vulnerable population we need to protect.

And the workers are vulnerable.

And I think they need to be acknowledged.

>> Jeff: Yep, I agree.

For some reason, your feed is cutting in and popping

out.

>> Senator Relph: Oh, I probably -- I don't --

sometimes my Internet is not the best in the world.

Is that better?

>> Jeff: I think it is.

The sound is.

>> Senator Relph: Okay.

Depends on how -- depending on how you're set up on

your screen, what'll happen is you're using the speaker

view and another person has their mic unmuted and a

noise gets into the meeting, it'll cause that person's

particular view to take over.

So the real thing is, everybody, if you're not talking,

you should have your mic muted.

Otherwise --

[Talking at the same time]

>> Jeff: Got it.

And Bridget is monitoring a lot of our mutes, so --

>> Senator Relph: Right.

I'm going to try and get my -- there we go.

I don't know why I'm -- there we go.

Yeah, we can tell -- I can see there's probably, oh,

maybe eight or ten people who aren't muted.

Which is fine if you're going to speak, but what I do

is I usually put it on the tile view so I can see

multiple people on the screen, and what happens is then

is when somebody talks, all's it does is show them

talking.

And the sound will come through.

But it doesn't mask what I'm saying as badly as it does

when you've got it on the speaker view.

I'm slowly learning this system.

>> Jeff: Yeah, well, this is my first today, Senator.

>> Senator Relph: Okay.

We use both Zoom and WebEx.

>> Alicia: Hi, everyone, I'm just going to step in.

Thank you, so much, Senator Relph, for being here with

us right away this morning.

[Talking at the same time]

We just want to hold off.

I know, Tim, you were trying to get a question in for

the Senator.

We just want to allow people a couple of more minutes

to step in.

So I don't want us to get too far ahead of our

conversation.

I see that Representative Lippert has also joined --

>> Representative Lippert: Hello.

Glad to be here.

Thanks.

>> Alicia:  Yeah, so I think a couple of more minutes

would be good for folks to just join.

I want everyone to know that we are recording this Zoom

meeting.

And so we will have it available.

We can share it with the folks later today.

And then I also wanted to let you know that we are live

streaming the virtual Tuesday from the Minnesota

Consortium for Citizens with Disabilities Facebook

page.

So hopefully all of our MNCCD social media followers

will be able to find it there as well.

So, again, I think we want to just give it maybe one or

two more minutes for folks to get started.

And I think, Bridget, with the Minnesota Consortium for

Citizens with Disabilities, is going to just provide a

very, very brief intro and overview.

There are too many folks on the call for everybody to

do introductions.

Just a friendly reminder that if you are not speaking,

please go ahead and mute yourself.

I actually am the host of the meeting, so I have

controls and if I see people's sound coming through,

then I can go ahead and mute you, but I don't want to

have to do that because I want you to be able to mute

and unmute yourself in case there's a point in time

later when you want to ask a question.

So maybe just one or two more minutes, and then I will

let Bridget get us started.

>> Alicia.

Alicia.

Alicia.

>> Yes, Tim.

Yes, Tim.

Could you go ahead and -- I'm not sure I know how to do

it from here.

So --

>> Alicia:  How to mute your line, Tim?

>> Tim:  Yeah.

>> Alicia:  Would you like me to mute your line?

>> Tim: Yeah.

>> Alicia:  I'm happy to do that, Tim.

No problem at all.

>> Jeff: This is Jeffrey.

Should I not touch any of my buttons?

>> Alicia: Um -- Jeff, I think your buttons are fine

for now.

[ Laughter ]

>> Jeff: I'll try not to push anybody out.

>> Alicia: I like the humor this morning.

Thank you.

>> Jeff: Well, I just -- like I was telling

everybody, I -- this is my first go at this.

I want to make sure, if I mute myself, I might not be

able to communicate, so I'll let you control my mutes.

>> Alicia: Sure, no problem, Jeff.

Thank you.

>> Jeff: Thank you, Alicia.

>> Alicia: So I know our members are on a bit of

tight timeline.

Session is starting today.

So I wonder, Bridget, did you want to provide some

comments?

>> Bridget: Yeah, absolutely.

First, thank you for joining, everyone.

This is great.

So Alicia kind of talked about the muting.

Just I'm going to go over a couple things about Zoom

etiquette, if you will --

We also have a captioner available.

So if you want captions during this, you can click

"Closed Captioning" at the bottom of your screen.

And then you can have captions available if you wish.

So today our host is the PCA Reform Coalition.

And we're going to have a bit of a town hall so we'll

have a few speakers and some personal testimony, and

then we'll open it up to everyone else.

So I'm going to pass it along to Alicia Munson to start

off and introduce our first person.

>> Alicia: Sure, thank you so much, Bridget.

Again, my name's Alicia Munson.

I am the public policy director with The ARC Minnesota,

and I know because our members --

[Talking at the same time]

Dena, we can hear you.

So I will try to mute her if I can.

There we go.

But I wanted to give Senator Relph another opportunity

to say hello to everybody and share some of his

comments that we did kind of before the meeting

formally started, and then wanted to give

Representative Lippert an opportunity to jump in.

We also did invite Representative Schultz to join us

today.

And so if she is able to get on the line, then we will

offer her an opportunity to share some updates as well.

So --

>> Vicki's on here too.

>> Alicia: So after we hear from our Senators and

Representatives, then we will share some additional

stories from folks.

So, Senator Relph, did you want to go ahead and again

and say hi to folks on the town hall?

>> Senator Relph: I sure will, and say hello to

Todd, he's been working hard.

I think that the thing we -- they're looking at right

now, is I know in the Senate, we're going to introduce

this as amendments tomorrow during the Human Services

committee meeting or hearing.

And hopefully we'll get it on the table and get a look

at it.

We've asked for a fiscal note to see what this is going

to cost.

I haven't seen that yet.

But at least we're trying to get an idea.

Of course with the absolute decimation of our budget

forecast, it's going to be a little more difficult to

try and work with this, but hopefully we can push

something across the finish line.

I think -- I know both Todd and I have been working

real hard to try and get this put together and get it

in.

I don't know where you are in the House on it, Todd,

maybe you can bring us up to date on that.

But as I said before, I kind of feel like the Lil Abner

character in the cartoon, that seems like every time we

try and do something with the PCAs, we run into this

rain storm that seems to kind of quench the fire, and

I'm hopeful that we can can just continue to keep

working with tanned try and keep the conversation in

the forefront.

And to move forward on this.

So I guess that's really I think I like the bill.

I like what we're doing.

There's a lot of good provisions in it.

And we'll see what happens.

So, Todd, if you have something to add, I'd certainly

welcome it.

>> Representative Lippert:  Thanks, Senator Relph, and

we've both been working very, very hard.

I think it's a priority of chair Schultz and mine that

we make sure that we are ensuring that everyone in the

state has access to the care that they need.

And that people with disabilities are not left behind.

And that seniors who are depending on PCA care are not

left behind, that we're valuing people with

disabilities, valuing seniors, and that we're valuing

those who care for them.

And so we need to make sure that we're providing some

additional resources right now.

Stabilized and people with disabilities can trust that

the care they need will be provided.

So as Senator Schultz -- or Senator Relph said, there's

a hearing scheduled in the Senate.

We're still pulling the details together in the House

as to exactly, you know, what the path will be for

various Health and Human Services provisions that'll be

moving forward, but the PCA reform bill has been a

priority and getting some additional support for PCAs

due to COVID-19 through a rate increase is definitely a

priority of mine and Representative Schultz, and we'll

be figuring out how to get this moving in the House and

get us to the finish line as we do our work too.

So if there are questions at this point, be happy to,

you know, do our best to address those.

>> Jeff: Did we lose Alicia?

>> Alicia: I'm here.

I'm just --

[ Laughter ]

Yeah, thank you, Senator Relph, and thank you,

Representative Lippert, for all of your efforts on

behalf of the disability community for really taking

the lead on this critical, critical issue.

I know that our -- the PCA Reform Coalition partner and

the Minnesota First Provider Alliance lobbyist Matthew

Bergeron is also on the line.

Matthew, did you also want to go ahead and share some

updates from your perspective?

>> Matthew: Sure, just a moment.

I think Representative Lippert and Senator Relph did a

fantastic job detailing the work that's been done thus

far.

We've also continued to engage with the governor's

office.

I know that -- I think probably one of the biggest

uncertainties right now is a question as to resources.

And what maybe available to the legislature going

forward.

We've seen Commissioner Frans comment in front of both

the Senate COVID-19 working group and the House Ways

and Means committee about just the general uncertainty

with the state budget situation.

But, you know, we're continuing to work with

legislators and leadership to really see the immediacy

of this issue, even in light of some of those financial

uncertainties and recognizing that the lives and

safeties of -- and safeties of, you know, tens of

thousands of Minnesotans kind of rely on this system

continuing to function.

So that's, I think, kind of the biggest, you know,

uncertainty right now in that space, and that's why

it's so helpful to have Representative Lippert and

Senator Relph really reminding their colleagues that

there's a very human impact and urgency to this.

But that's all I would add, Alicia.

>> Alicia: Thank you, Matthew.

And I see that Representative Schultz, another champion

of ours in the House, has also jumped on the line.

Good morning, Representative Schultz.

Did you want to say hello to everybody who's

participating in the town hall and offer any comments

this morning?

>> Representative Schultz:  Well, I just want to say

hello to everybody.

Thank you for hosting this and for inviting us to

participate.

As you know, Representative Lippert and Senator Relph

are taking the lead on this, and I'm supporting them in

any way I can.

I'm talking to many of my organizations in northeast

Minnesota about their concerns and sharing those with

the governor's office and our leadership.

So just want to thank everyone for advocating.

This is such an important issue.

I do have a question when we get to questions at the

end.

And I might have to jump off because rules committee is

in recess, so I might have to go back.

So if you see me jump off, that's why.

>> Senator Relph: I just wanted to jump in here a

little bit.

Representative Schultz, I certainly appreciate your

support on this.

This has been a big thing.

I have been in conversations with Senator Abeler as

well, and I think we're all committed to try and

getting something done here.

So again thank you for your support and help.

>> Alicia: All right, thank you all.

So we did the next portion of the forum today, we

wanted to move into kind of some story telling and some

updates from members of the PCA Reform Coalition, and

then we also wanted to hear from folks that are living

this day-to-day as well.

So we have a bit of time now for those stories, so,

Jeff, I know we had you first on the list.

>> Jeff: Sure, thank you, Alicia.

And again, thank you, Senator Relph, Representative

Lippert, Representative Schultz, for your support.

We couldn't do this without you, and we are really

appreciative of all the efforts that are doing over at

the legislature during these difficult times.

I have some prepared remarks to make, and maybe share

an observation or two.

Personal care assistants play a vital role in keeping

people with disabilities and seniors safe and healthy

at home.

The role of the personal care assistants have never

been more important.

People in needs of hands-on care were already facing a

severe shortage of workers before this crisis hit.

And PCA wages are critically low and not sufficient to

sustain the workforce.

The PCA program needs an emergency temporary rate

increase to support PCAs who are working during this

pandemic, and to pay for overtime for PCAs who fill

gaps in staffing.

We're currently receiving word out there that a lot of

people who have been working part-time are no longer

working for whatever reason, whether it be that they're

concerned about their own family members or they're

also personal care assistant -- or their clients are

concerned about some of the part-time staff might be

not safe to be coming in their home and want to

practice social distancing.

So this is becoming kind of awkward for people to try

to do all the necessary work.

And then finally, we need to recruit new personal care

assistants to address the worker shortage.

When many of the college students went back home to

their own communities, we lost a lot of direct care

staff, working in personal care situations, and a lot

of people lost their direct care staff because of the

college students going back to their own communities.

And so that's been a little bit of a tricky thing to

work through.

PCAs also need personal protective equipment.

Including gloves, masks, gowns, so they can safely come

and go to people's homes without getting the virus or

spreading it to their clients.

And this doesn't necessarily need to happen for every

single client, but it really affects those individuals

who have multiple PCAs coming into their homes, for

high needs clients, or for PCAs who have multiple

clients and they go to many different people's homes.

And we definitely don't want to see this -- the spread

of the pandemic.

Without PCAs, the most vulnerable individuals can't

remain at home.

Even if they don't have the virus, many will be forced

to seek care at hospitals and nursing homes, and of

course, this is the last thing our overloaded health

care facilities need during this crisis.

And I would like to just kind of move on and say,

today's speakers following me will provide specific

examples of problems already happening due to this

pandemic, both in the PCA Choice and the Traditional

program.

This is been a real concern for many individuals.

And so thank you all for supporting the personal care

assistant program.

And we hope to see something happen for this critically

needed and vital workforce for clients on this program.

Thank you very much.

>> Alicia: Thank you, Jeff.

And I think we will switch up the agenda a little bit

and allow some of other folks who have messages me

letting me know that they would like to share a story,

so Jillian Nelson from The Autism Society, did you want

to really briefly share what your experience has been

with us for the members who are on the line right now?

>> Jillian: Yeah, I wasn't expecting that.

Sure.

I work part-time as a direct support professional.

And I've lost all my hours due to social distancing.

My client's roommate's parents are making unsafe

choices, so -- or his family who runs his staff have

chosen to keep all staff out to protect us, because

question don't know what we would be exposed to.

If you lose the client and you lose those hours, like

for me, this was my part-time job.

So I've lost a decent chunk of my income, and I can't

qualify for unemployment because I am still receiving

the --

[ Indiscernible ]

It's a frustrating time to be in this field.

Unemployment in between not the pay wage, it's like --

it's a tough place, and I know I'm not the only one

sitting in this boat losing hours and losing time but

can't actually do anything because a lot of

professionals and the PCA and the direct support

industry, this is a part-time job because we can't pay

our bills full time on just this.

So --

>> Alicia: Thank you so much for sharing that,

Jillian.

And I know, Nikki, did you want to chime in and kind of

share what your experience has been?

>> Nikki:  Sure, hey, hi, everybody, good to see you.

You know, I receive care.

I receive care every single day of my life.

And obviously during this time, it's been, you know,

more difficult to keep care and to have consistent

care.

And so, you know, the things that I was, you know,

really hoping that we could try to include in some of

our COVID responses, also addressing the overtime and

the 275 cap.

As you know, we have the people around us be able to

add other people to our -- to be PCAs, it's also

limiting of, you know, some PCAs who have to quarantine

themselves, then it puts the burden on other folks, and

so over time, and hazard pay, is something that I'm

really concerned about.

And -- and so, you know, I just thank all the people

who have been working on this.

And -- and -- and, yeah, and so I'll pass it on to the

next person.

Thank you.

>> Alicia: Thank you, Nikki.

So Jean Bender, did you want to share what your

experience has been with like this, recently?

>> Jean:  Sure.

David currently has four staff, three of whom are not

able to work either because of either their other jobs

or other people that they're in contact with.

He's pretty vulnerable.

So we have just one staff who's working.

And her partner just found out that his business is

going to be cleaning hospitals where there are COVID

patients.

And so now she is not going to be able to work anymore

either because of her contact with him.

And his contact.

So in order to keep David safe, we have to not let

anyone else in our home, which is difficult for him,

and for us.

But he's getting pretty sick of mom and dad.

[ Laughter ]

>> Alicia: Thank you, Jean, yeah, I think this is a

common experience that a lot of folks in our

communities are sharing right now.

So there have also been a couple of really good

questions that are coming through in the chat, and I

know that some folks are on their phones and may not be

able to see the questions.

So one of the questions was, is there support to pay

spouses and parents for children under 18 to be a PCA

for their loved one?

I believe we need a federal waiver for this.

And, Maren, I know you had a response to that good

question.

So can I kick it to you to give an update about that?

>> Maren: Sure, thanks, Alicia.

What I put in the notes is that that's something that

MCCD and others have been asking for from the

department.

We've been -- the department has been really gracious

and has set up weekly -- standing weekly calls with the

Consortium for Citizens with Disabilities, and then I

collect questions in advance, and then we walk through

them during that call.

And off the top of my head, I don't remember the exact

status of this.

I do know that it's something that they've been working

on.

And I'd have to look on the -- I'm going to try to

check on the website right now to see if it's been

finalized.

I know that all of the waivers that DHS is seeking as a

result of the executive order 20-12 authority and some

of the blanket waivers C.M.S. has granted still do have

to go through a fairly extensively internal and

attorney review within the department and the Attorney

General's Office.

So it's taking them quite a while to get through some

of those, longer than many of us would have hoped for.

But I do believe that's one that they were working on.

So I'll try to check on the status of that, and then

I'll update if I find it.

>> Alicia: Thank you so much, Maren.

Carol had another really good question.

Carol, would you like to pose your question to the

group right now and hopefully we can get an answer for

you?

>> Did you say Carol?

>> Alicia: Yes, I did.

Please go ahead and pose your question to the group if

you'd like.

>> Carol:  Okay.

So our question is, we have an adult daughter with

disabilities.

She's at high risk for if she were to get COVID, you

know, and we are both 60, so I guess we're in that

category as well.

Anyways, we have PCA service and we have in-home family

support workers.

And so I just curious if the PCA -- this PCA bill would

also carry over to agencies that provide in-home family

support or respite services.

>> Jeff: Are you on the personal care assistant

program, do you know?

>> Carol:  Well, we have PCA Choice through ARC

Northland in Duluth.

You know, so she's on a waiver --

>> Jeff: Then this legislation would help.

>> Okay, great.

>> Carol:  For both agencies?

So the other agency isn't doing -- it is just like

PCA --

>> Jeff: It's for Personal Care Choice, and it's also

for Traditional that's not specifically a choice

agency.

So if they're coming in to help augment your staffing,

I would be willing to guess that this legislation would

apply.

>> Carol:  Okay.

And I think the last person who was talking had, you

know, a real similar situation that we do.

I'm working from home.

My husband can't go out to work because a lot of his

calls involve going to hospitals to do service work, so

he's eliminated that.

It's just this huge snowball effect.

And now we have a care attendant who was supposed to

work today.

She reported that she had a fever yesterday.

It could have nothing to do with COVID.

But we're not sure, so we're being extra careful, and

we are not having her come in for possibly three days.

So it's just -- it's just insane.

To try to manage it all.

>> Alicia: Yeah, thank you so much, Carol, for

sharing that.

I know it.

Yeah, it's really a challenging time.

Never quite know, especially with where testing

capacity is at.

So I hope that your PCA feels better soon and that

you're able to, you know, have her support again.

Also wanted to offer, you know, Tyler Frank is on the

line with us and maybe offer him an opportunity to

speak from the PCA worker perspective.

>> Tyler:  Sure.

Yeah, we've been hearing all sorts of things from all

sorts of angles, at S.E.I.U., and so we all know from

our own experiences that everybody's situation in home

care is different.

But the main kind of -- we did a reach out to all of

our members just checking in, seeing what people were

struggling with, what they thought we should be working

on, and the main three things, they've all been touched

on here, but the main three things were overtime pay

for the workers who are filling in gaps working extra

hours doing the care, I mean, a lot of clients are

having extra cares right now in order to fortify their

lives for a completely different life style than

they're used to, covering sick pay when Locke a lot of

people are concerned on the client side and on the PCA

side of, like, what does it look like if I, the worker,

gets sick?

How do I still get my bills paid and not have it go

figure something out, and the client -- the client side

is worried about, you know, what happens if my PCAs get

sick and they have to figure something else out and I

lose them for more than just two weeks, I lose them for

the indefinite future and I have to go back to the

drawing board and try to find people.

So those go kind of hand in hand of giving people the

ability to do the right thing and keep everyone safe by

taking sick time when they need it, and basically have

their bills be able to be paid during quarantine and

also for the folks who fill in those gaps to be able to

get the overtime pay that right now a lot of people are

working those overtime hours, they just can't bill

them, they work them off the clock and they make

sacrifices that they shouldn't have to make because we

already make a lot of sacrifices to do this work

normally.

And then the third thing is just PPE, like we need

access to PPE

We've been working on building a mutual aid support

system, Nikki has been a part of working with that

along with several of our other leaders, finding the

supplies that are out there, stockpiled in our

basements and our closets and trying to share them

around to the people who desperately need them, so I

can maybe drop a link to that in the chat in case

people would think that's helpful in your situation, or

if you have a stockpile that you can offer to people

who are -- the shelves are empty -- I just dropped off

toilet paper to someone recently, by the time the

shopper gets to the store, there's no toilet paper

because it's only there in the morning.

So that kind of stuff, like, that's a really helpful

thing, so I'll drop that in the chat and then I'll cede

my time.

[ Laughter ]

>> Alicia: Thank you, Tyler.

Really appreciate you sharing that perspective.

We also wanted to make sure that we had some folks from

Greater Minnesota share what this has been like from

their improve.

So Julie Lux with MRCI, did you want to share a little

bit from your angle?

>> Julie:  Right, so my name is Julie Lux, I'm with

MRCI and we're a provider in south central Minnesota.

And like Nikki and Tyler mentioned, some of our staff

are frightened to go into the home, because, A, they

could potentially be exposed being a community member

and they don't want to give it to their client.

They are desperate for PPE and cannot find it.

They're -- we've gotten some pretty creative mask

pictures sent to us.

From our staff who have created masks on their own out

of material that they have found around their home.

So that's great to see.

But that's not really a long-term solution when we need

things like gowns, gloves, and potentially head gear.

So that's one of our biggest concerns that we're

getting from southern Minnesota because a lot of our

community members in rural areas don't have a Walmart

or a Target that they can just go to that isn't 40 to

50 miles away.

And when they do get there, like Tyler mentioned,

there's nothing there for them.

So I have one story to share here.

A -- an adult male who lives with his parents in

southwestern Minnesota, who has chronic health

conditions, is not able to have his PCAs come into the

home any longer because of the fear of his chronic

condition.

So his dad offered to take a leave of absence from his

community job to get hired on to be his PCA.

He isolated himself for two weeks just to ensure that

he didn't have any issues for his son, and then during

that time, he was able to get his employee packet done

but then had to wait with the background study.

Once he was able to get hired, he now is a staff for

his son, but he is at risk of losing his full time

community job because his leave is almost up from his

position.

So he has to outweigh whether or not he wants to

continue providing care for his son because there's no

more PCAs to come into the home or go back to his

community job because that's more of a money maker than

being a PCA for the family.

So that's just one story we have to share in southern

Minnesota.

So thank you for the time.

>> Alicia: Yeah, thank you, Julie, for highlighting

those stories.

And another individual that's on the forum from Greater

Minnesota is Jenny Kempfert from the ARC Northland.

>> Jenny:  I will.

Can you hear me okay?

>> Alicia: Yes.

>> Jenny: Great.

I work for ARC Northland which is an advocacy and

support organization for folks with disabilities and

their families.

And we also provide a PCA Choice program here in

northeastern Minnesota.

So over the past month our PCAs on the families they

serve have been really trying to take things in stride

and proceed the best they can.

However, things are obviously getting more challenging

every week the longer this goes on.

Some families are choosing not to have their PCAs work

right now and some PCAs have decided they don't feel

safe going to work right now, and we get all of this,

but we also serve many individuals who absolutely rely

on PCAs for their basic daily needs and if they don't

have adequate staffing, they are going to end up with

the choice of moving to an assisted living or a nursing

home where they're going to be more at risk, or by

staying home, they risk injury or death if they don't

have adequate help, if someone can't get out of bed in

the morning without assistance, they're really stuck.

So for PCAs who decide that they don't feel safe going

to work anymore, yeah, we're really in trouble.

So keep in mind that our industry already had a

significant staffing crisis before this pandemic hit.

And the crisis directly relates to the PCA rate, which

really isn't high enough to support fair wages or

overtime costs.

The staffing shortage is difficult enough for PCA

agency -- PCA Choice agencies like ours where clients

recruit and hire their own staff.

But it's devastating for traditional agencies that

provide that service to clients.

And honestly, right now, a PCA can make more going on



unemployment than what any agency can pay them.

Our PCAs like every other agency, our PCAs and our

clients are desperately in need of PPE, and we have

nothing to give them.

We don't have the funding for it or even access to it

right now.



We serve people with all types of disabilities and

medical conditions including quite a few people with

COPD or other conditions that suppress their immune

systems.

We have some families who have always supplied their

own gloves for PCAs, but right now every one of our

PCAs should have their own gloves and masks probably

all of the clients as well.

We had one PCA worker who had a kidney transplant a

month ago and she should really be home, but she shows

up for work every day because she relies on the income

and she deeply cares about her client and her

well-being.

She shared with me that she's almost depleted her

supply of masks that were intended for home use, but

she's been using them at work every day.

I also heard from a mom yesterday who's providing some

relative foster care who have been through some

significant trauma, and they have a lot of related

behavioral disabilities.

They need PCA help badly right now, but she's too

fearful to have her PCAs coming into the home because

the mom herself has hung issues and she can't find

access to face masks.

She lives in a very rural area and she had already gone

months without staffing, before finding somebody

reliable shortly before this pandemic hit.

We also have a lot of folks with mental health

diagnoses, and this has just been an especially

overwhelming and isolating time for them.

So I ask our legislators to please support this program

any way you can.

People are understandably fearful.

They don't have adequate protective equipment.

We can't pay our PCAs enough and there's not enough

testing available.

We provide a vital service to strong, resilient clients

with amazing PCA workers, and we need your help to keep

doing so.

Thank you.

>> Alicia: Thank you, Jenny, and I just wanted to

note for everyone that's not able to watch the chat

function over here, Representative Todd Lippert said

that he had to hop off because he needs to leave to

travel to session.

He said thank you for the opportunity to hear your

stories and for the advocacy work.

I look forward to continuing the work.

So again, we're just really grateful to Representative

Lippert for his leadership on this issue, and I think

it would be great if all of us could do some outreach

to these champions and just thank them for their

participation today and for all that they're doing on

our behalf.

So next -- oh, I'm sorry.

>> Representative Schultz earlier in the chat noted

that she had to leave too.

>> Alicia: Yep, and I think she joined back again.

So thank you for noting that.

So now I wanted to turn it over to Noel.

I know that she had a story that she wanted to share?

Noel?

>> Noel: Yep, I'm coming from a very similar

perspective and I appreciate what everybody is

offering.

Coming across the situation or a few of them where I go

to do my phone visit and there is a PCA who's living

with his mother who's the client and also the father

who is -- has been to the E.R. and diagnosed and

treated for bilateral pneumonia, suspected COVID, and

needing to quarantine and having the PCA care for the

client who's extremely vulnerable given her

co-morbidities, and the father, and unfortunately going

back and forth to them within the same home and not

being able to leave and quarantine as best as possible

without masks.

And giving them the best suggestions without gloves,

because I see gloves being used for procedures to keep

germs away.

Which is very important.

But if they're used continuously, I think that it could

be more harmful if they're not used correctly.

And having a lot of hand sanitizer is not an option.

But what is equally protective is liquid hand soap in a

pump which they don't have.

The cheapest thing is buying a bar of soap which is

actually not very user friendly in this situation.

I wish that we had access to liquid hand soap for the

clients because we know that gloves are only helping

for that particular situation.

Whether you're changing someone's Depends, whether

you're helping them shower or something like that, but

when you're working all day and using gloves, they're

not actually helping.

Contaminate the rest of the home or especially when

you're going back and forth.

So that was just my experience and really hoping that

there's somehow that we could try to promote even the

clients and caregivers to use liquid hand soap when

we're doing education with phone call visits.

And really anything else that they suggest or they find

helpful to protect their face when we don't have a

mask.

Yeah.

>> Alicia: Thank you.

>> Noel: Yeah.

>> Alicia: A bit disheartening to hear that, just

access to liquid soap is a challenge.

Right now.

That's a bit staggering.

But thank you for shedding some light on that.

Representative -- or I'm sorry, Senator Relph had a

good tip here.

Senator Relph, did you want to share that with folks?

>> Senator Relph: Sure, I just -- one thing I've

been doing, and you can do this a couple ways.

You can take liquid hand soap that you do have, and you

can thin it.

It will actually work just as well if you thin it.

And it's actually easier to control the amount that

you're putting on your hands.

Sometimes the pump puts too much out.

But all's you have to have is enough to get up a little

lather.

So what I also suggest is you can take something like

Dial and put it in a pan or a jar with warm water, and

allow it to slowly dissolve into that.

You can then put that in a pump and it will actually

work, and as I say, Dial is a very good product because

it's antibacterial.

Rather than having to pick up a bar and wash your hands

with it and then set it down.



>> Alicia: Yep, that's a great tip that's

scientifically based.

It's the lather and the friction.

20 seconds of warm water, and we've got it.

Thank you.

>> Jeff: We're getting a lot of things accomplished

here.

>> Alicia: Yeah, a champion in the Senate, and he's

really savvy too.

[ Laughter ]

So thank you, Senator Relph.

We really appreciate that.

>> Jillian: One place I've been able to get hand soap

really quickly that a lot of people aren't going to is

Alta, as in the makeup store.

It's decently priced, and it's antibacterial like Bath

and Body Works, but nobody's going to the makeup store

looking for hand soap, but don't get the lemon.

It smells funny.

>> Alicia: Thanks, Jillian, good tip.

So we know that as the disability community is in a lot

of ways disproportionately impacted by this crisis, we

know that communities of color, culturally specific

communities in Minnesota also are and face unique

challenges and barriers, and so I wanted to turn it

over to Pang Vang, and share a little bit, Pang, from

your perspective.

>> Pang:  Sorry, Alicia.

I had to unmute my mic.

Thanks.

I -- from the Minnesota First Provider Alliance, I know

that we've also had the same issues that I've been

hearing all of you guys talking about.

We -- Ian and I have just been taking phone calls day

and night.

I know we're still taking calls at like midnight and

1:00 in the morning and most of those calls, for

instance I had one of my caregiver is -- works on

another job and that job had a, you know, he was on a

team, and that teammate's family has somebody who was

positive, tested positive for COVID.

And so now his whole team is being quarantined which

means he's being quarantined and we're scrambling to

try to find staff people.

It's been especially hard in the minority community

because there is a language barrier.

So I spent a lot of time hiring interpreters, trying to

get to everybody, making calls, making sure they

understand what COVID is, social distancing, they make

sure they protect themselves.

Some of them are so scared, they're watching the news

and they're just -- they've just barred everybody from

their home, because they don't understand what's going

on.

They don't even understand social distancing, as far as

they're concerned, as long as they close their door and

don't let anybody in, they won't get sick.

They won't answer their phones.

We don't know if they're okay.

And because we can't visit them, we don't know if --

what's going on.

So it's been real -- it's been a challenge in the

minority community.

Training them to get them to understand what's going

on.

And how they can protect themselves, and then -- and

then because a lot of those families live in a big

family so now you have, like, five or six family

members living together, they're all coming from

different jobs, and who knows who might have been

exposed and sick, so now they're starting to limit who

can come in the home.

And it's just been a chaotic mess.

But I know that one of the things that Dean and I get

calls on day in and day out is the R.N. visits that

traditional PCA agencies do.

The face to face visits.

We've been waiting for DHS, I know the governor has

already approved that, but we've been waiting for DHS

to finally finalize that.

So that we can waive the face to face nurse visits that

we do to monitor our clients.

We are doing them.

We're doing them face to face.

We're just not able to bill it.

So now just most of the is a agencies are just paying

out of pocket for that and hoping that gets done still.

>> Alicia: Thank you, Pang, really appreciate your

perspective and you sharing that with everyone today.

Also got a note from Hattie who is a qualified

professional for Best Care in their Northern Minnesota

office which is in Grand Rapids.

Her connection is a little bit spotty up there.

She said, "I have spoken to our local hospitals, and

they have expressed the importance of PCA and home

care, especially with how critical they are to make

sure that people are staying healthy in their homes,

preventing clinic and hospital visits."

Absolutely.

Have heard -- I have heard that from a lot of folks

that PCAs are just so vital in ensuring that we avoid

strain on our hospital and health care systems,

especially now, you know, it's best for everybody if

they can stay in their homes, and it's the most

cost-effective option as well.

So, you know, is there anybody else that wanted to

share a story?

I've been monitoring the chat feature.

This could be a little bit challenging, but I did just

want to open an opportunity to anybody who's on the

phone to share a very brief personal story from their

perspective.

>> Can I speak?

This is Heidi.

>> Alicia: Oh, hi, Heidi, yeah, please do.

>> Heidi: I just set up this past Wednesday.

I have a friend who is an ally.

She likes to be called an ally and is advocating for my

Disability Services, and she asks the question, has

anybody been checking in with you or talking about your

safety and are you being taken care of?

And I said no.

And then this past Wednesday -- well, actually I put

out a call to my social workers, and then we had a

three-way call on the phone that friend, ally, put

together.

And then from there, we talked about how to do this.

And now tomorrow I'm going to have the meeting, and

it's all virtually by email and phone, and we don't

know how many hours we'll get.

We don't know what we're going to get.

We don't know anything.

But basically they cannot come to my house and do

anything.

So I'm lucky I have two friends that can help me out.

But I have to arrange it around their job and their

lives too so it's not like they can just come.

So that's what we're working on right now.

But what I found out is that our system is so broken

that even our social workers are not getting all the

information correctly.

So she had to email back to find out how the company is

doing it, because we asked really good questions.

And then we're documenting everything by email, so if

anything goes wrong, we can go back and say, well, we

did talk about it.

We asked you.

And we made it very clear that I get CCed on it,

because at my once a year meeting, I'm supposed to be,

because that's how they communicate to me, but it's not

always happening.

It's going to the social worker, so I don't know what's

really the truth is right now.

We'll find out tomorrow.

So cross your fingers for all good things to come

across.

That's all I wanted to say.

>> Alicia: Thank you so much, Heidi.

And is there anybody else that wants to share a

importantly story or -- personal story or experience

with the PCA program or from your perspective as a PCA

or a provider?

>> Alicia, this is Dena.

I'm going to be very quick and brief.

So I got a call from a hospice care in Washington

County who is trying to get a person, PCA services,

which would be traditional.

So they need staff.

In order for him to come home.

And we can't figure out how do his complex care

training when we all can't be there in the home.

So this poor person is in limbo right now.

So this is another way of -- that this whole thing is

impacting the clients.

And he -- and they want him to leave there because he's

in a hospital setting.

So that's just another example.

>> Alicia: Thank you, Dena.

And I know Hannah wanted to share a bit of their

personal story.

Hannah, did you want to chime in and share your

experience with this?

Hannah, are you still with us?

>> Alicia, can you hear Hannah?

>> Alicia: I cannot hear Hannah, no.

And she's not muted on my side of things.

So --

Hannah, are you there?

Can you hear us now?

Unfortunately, we still can't hear Hannah, so maybe

we'll try to figure that out on our end, but I know

Noel had another suggestion that she wanted to share

about --

>> Heidi: Just so you know, I can't hear her either.

So it's not just you.

>> Alicia: Thank you, Heidi, yep.

>> Noel: Yeah, I learned in working with specific

clients, dialysis, chemotherapy, other treatments that

may put them at vulnerable risk, the clinics that

provide those treatments also have been providing them

with masks.

I can't say all DaVita clinics, but if you -- if

there's a client that's known to have treatments for

dialysis, it's an option that they could get a mast for

themselves -- mask for themselves as well as their PCA.

And also chemotherapy and clients that receive medical

gloves on a monthly basis for changing colostomy bags,

diagnosed incontinence, other treatments of wound care

that require gloves that are ongoing, that either

insurance, M.A., or waivers pay for this, and it's

something that's mailed to their home on a regular

basis.

It's just automatic shipment, because they have things

that need dressing changes, and it's life-long.

So those are other options.

If clients are not currently receiving those gloves,

when I found a I did -- a Latino family, she moved from

California, and the family has been buying -- trying to

find gloves and incontinence pads for his mother who

should be covered by insurance, just a thought to look

into if you need those, in those dire situations.

That's all.

>> Alicia: Thank you so much.

And I know -- we're running short on time, but it

sounds like Hannah's interpreter is going to have her

talk through their phone.

We just have a couple minutes, and I want to give

Senator Relph and Representative Schultz a couple

moments before we wrap up to address the town hall

forum participants.

So, Hannah, are we able to hear you now?

>> Interpreter: Hannah, are you ready?

>> Alicia: Yep, go ahead.

>> Hannah: Can you hear me now?

>> Alicia: We can minimally hear you.

>> Interpreter: Can you speak louder, Hannah?

>> Hannah: Can you hear me?

Is that working?

Can you hear me?

>> Interpreter: Can you hear her?

>> Alicia: It's very faint.

>> Interpreter: It's very faint, Hannah.

Turn your volume up.

>> Hannah: [ Inaudible ]

Hi, my name is Hannah -- hi, my name is Hannah, and I

use a service called Support Service Providers.

Because they help deafblind people.

And before this all started, we only got 20 hours a

month.

And now we're even getting less.

And so a couple weeks ago, I ordered from Wal-Mart.

And I didn't -- and I was just misinformed.

They really didn't inform us how the support service

providers could help us.

So I had to go on Facebook and ask a random stranger to

get my food for me.

Because I'm immune compromised.

So -- but then in the meantime, I spoke with my support

service provider.

And she said that we -- they can go get us stuff, if we

order it.

And they won't even allowed to do that before, so

that's interesting.

Because we always had to be with them when they got us

stuff.

So that's my story.

>> Alicia: Thank you, Hannah, and I'm really glad

that we were able to hear you.

Thank you for --

>> Oops.

>> Alicia: Just thank you for sharing that, Hannah.

>> Heidi: Just so you know, this is Heidi.

She's right.

I just wanted to say that she's right, you need to be

with your support staff, because I had the same problem

that she's talking about.

Just wanted to relate that to you.

>> Alicia: Thank you, Heidi, I'm sorry you had that

experience as well.

Everyone, we're running short on time.

We've got just a couple of minutes left.

Senator Relph wrote in the chat that he said he's going

to have to leave the meeting for a moment.

Thank you for all your stories and input.

And it looks like he's back on.

So, Senator Relph, did you have any closing comments,

and then we'll turn it over to Representative Schultz?

>> Senator Relph: Well, thank you.

No, I just appreciate the opportunity to share stories,

and we'll just continue to try and work with this and

get the supports done.

I've been taking some notes on some other things that

maybe we can bring up to -- at least to the department

and possibly getting them to move on.

I think that the -- one of the things that I'm hearing

is we really need to look at and that is to try and get

some priority for testing for PCAs, I think that's

something that would be a huge benefit.

And I will definitely be talking with whomever's

willing to listening, and see what we can do to try and

get --

[ audio cut out ]

>> Alicia: It looks like --

>> Senator Relph: Thank you for all you do.

In the near future.

>> Alicia: Thank you so much, Senator Relph.

Just one of our biggest champions in the Senate.

Again, we really are so grateful for everything that

you do and have done.

So thank you so much for spending your morning with us

on a very busy day.

Representative Schultz, did you want to share any

closes comments with the participants?

>> Representative Schultz:  Well, I just want to thank

everyone again for advocating for higher wages and for

PPE.

I know we're waiting for the fiscal note on the bill

that Senator Relph and Representative Lippert are

working on, so I'm looking forward to seeing that

fiscal note and then advocating for funding that.

And it's going to be very difficult to get new funding,

because our revenue estimates look really bad.

In terms of revenue coming into the state because of

the number of people who are unemployed.

So it's going to be a heavy lift, and so we're going to

need you advocating, contacting your legislators now

and telling them how dire the situation is.

I know that Tyler has a question about PCAs being

eligible for unemployment insurance and can get paid

quite a bit more than what they make when they're

working.

Send me an email, Alicia.

Can PCAs, do they automatically qualify for

unemployment insurance in this situation, or do they

have to be let go from the agency?

So if someone could help me figure that out.

Do they automatically qualify for unemployment

insurance?

That will help me as I advocate for funding for higher

wages.

>> Alicia: Thank you, for sure, Representative

Schultz, we can definitely get you an answer to that

question.

And Representative Schultz also highlighted the call to

action that we have for all of you today.

On Friday and just yesterday, members of the PCA Reform

Coalition, the Minnesota Consortium for Citizens with

Disabilities, the ARC and others, asking for folks to

reach out to their legislators to ask for this

emergency temporary relief funding, to cover wages, pay

for overtime, and ensure that providers are able to

purchase that personal protective equipment.

So whether you have already contacted your legislator,

or if you haven't yet responded to that alert, please

be sure to do so.

It is more important now than ever, as Representative

Schultz mentioned, that members are hearing from now

about the critical importance and the wide range of

issues and challenges that are facing our community,

individuals accessing personal care supports and the

PCAs that are doing that really, really important work.

So please, please, please, be sure to respond to that

alert.

We can share that again on the PCA Reform Coalition

Facebook page.

So it has all the details and instructions for how to

reach out to your legislator if you need some support

with that.

It also has sample messages that you can use and be

sure to incorporate a personal story and let your

legislator know how this is impacting your life

specifically.

So with that, I think I'll turn it over to Bridget for

just final closing comments before we end the forum.

>> Bridget: Yeah, thank you so much, Alicia.

I just wanted to say thank you to everyone for sharing

their stories today and being a part of this call.

This was a great turnout.

And we really appreciate having you here.

We definitely want to thank Senator Relph,

Representatives Schultz and Lippert.

And we want to thank to Matthew, Jeff, Pang, Julie,

Jenny, and everyone else who shared their stories

because this is all about you, and we want to hear from

you, and that's exactly what we did today.

We hope that you guys can join us in the future for

more "Tuesdays at the Capitol" virtually.

And if anyone has any ideas or anything that they want

to talk about in the -- in this format again,

definitely reach out to MNCCD, and we try to make that

happen.

So thank you, and have a good rest of your day.

>> Jeff: Before you hang up, can we answer

Representative Schultz's comment?

>> Alicia: Yep, Pang sent a response and said that

the PCA does have to be let go from the agency in order

to be paid unemployment insurance, and we made sure

Representative Schultz got that answer directly.

So thanks, Jeff.

>> Jeff: Yep, and real quickly, people who are

part-time sometimes can do that as well, but they're

technically not allowed to just quit and then be

eligible for unemployment insurance.

But it's really sad when PCAs are getting paid less

than what the unemployment insurance currently pays.

>> Alicia: Yeah.

>> Jeff: Thank you.

>> Alicia: All right, thanks, Jeff, and thanks,

everybody.

Hang in there.

Stay healthy.

Respond to that action alert!

[ Laughter ]

Bye-bye.

>> Jeff: Bye-bye.

>> Thank you, everyone.

>> Bye!

>> Thank you.

>> Thanks Alicia.

>> Thanks, Noel.

Great suggestions.

>> Yeah, see you again next week.

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