Healthcare Rationing Rough Cut

>> JUNE KAILES: So today, I'm June Kailes,

I'm going to be the uh, facilitator today.

Um, we're peeling the onion on a critical

and scary topic.

That's at the forefront of many of the

online discussions these days.

What's uh different about today is that

we're going to look at, you know, what

are these um altered standards of care.

You know, what do they look like?

Where do they come from?

How are they applied?

And then at the end, I'll do a few

comments regarding our self preservation

strategies.

So I'd like to introduce someone I

periodically work with, over probably

a decade, and also who I've been able to

torture during that time, on ocassion.

So Dee Grimm has 20 years plus experience

as an emergency department nurse and

manager, and is a healthcare emergency

preparedness manager.

She's been a national consultant with

local, regional, state-level jurisdiction,

on emergency operation plans and managing

state-level emergency management projects,

and coordinating the multiple agency

exercises.

She's a consulting instructor with FEMA's

Noble Training Center, and she also has a

Juris Doctorate in law.

She's a subject matter expert in legal

and ethical issues on emergency

management, at-risk populations in

disasters, and healthcare emergency

management.

She sits on the Texas state disaster

medical system task force, as chair of the

Family Assistance subcommittee, and she's

co-chair of the Mass Fatality subcommittee.

Her overall disaster responses include

Hurricane Ike, Alex, and Harvey, the Haiti

earthquake, the Reno Air Race Crash,

the Ebola outbreak, and the Sutherland

Springs Massacre.

She's currently responding to the COVID-19

event, and she's also the Mayor and

Muncipal Court Judge in her home town

in Texas.

So, she definitely has a lot of extra time

on her hands.

So Dee, welcome and over to you!

>> DEE GRIMM: Thank you, June!

Uh, thank you Megan.

Thank you all for having me on today,

I am very excited about this topic.

Um, not only because it's uh, something

that I've been looking at for a great many

years, but also because I feel it is so

very relevant right now in uh, what's

happening in the world and the United

States.

So what I wanted to spend a few minutes

on uh, this morning or in my case in Texas

this afternoon, uh, is to talk a little

bit about the.

>> MEGAN COWDELL: I'm sorry, guys, it

looks like we might have lost Dee,

uh, I'm wondering if it's an internet

connection um, she should be getting back

on in a moment, but June, do you maybe...

oh, there you are Dee!

>> DEE GRIMM: I'm sorry, can you hear me?

>> MEGAN COWDELL: We can hear you now,

yeah, you cut out, so, go ahead. Sorry.

>> DEE GRIMM: Oh did I?

>> MEGAN COWDELL: Yeah.

>> DEE GRIMM: Okay, let me go ahead,

and do we have our slide back?

>> MEGAN COWDELL: Um, so you'll need to

re-screenshare that.

>> DEE GRIMM: Okay. Where'd I go?

Here I am!

>> MEGAN COWDELL: Zoom tool bar, and then

screenshare. There you go!

>> DEE GRIMM: There we go, and we'll go

back up to the top and we'll find our

place, okie doke.

Okay, so uh, again, well what I wanted to

talk about today was how the uh, standard

of care uh, in this country is not

business as usual today.

Uh, because it's not business as usual,

we are looking at some standards that

we've probably not looked at too much

in the past, um, we've had cases of it

with Hurricane Katrina, where we've seen

deviation from the normal standard of care

and looked at things like allocation of

scare resources, uh, triaging based on

different criteria than normal.

And I'd like to discuss how this

potentially, uh, these guidelines

potentially create a disproportional

impact on people with disabilities and

others with access and functional needs.

Uh, and I also want to talk a little bit

today about some strategies to improve the

health equity among populations that are

disproportinately impacted in disasters.

So what we do know is that historically

people with disabilities uh, have been

disproportinately impacted in disasters.

We saw that very, uh, revelantly in uh

Hurricane Katrina.

Uh, we have seen it, uh, over and over

again.

Generally where we have seen it though

is in the realm of response and recovery.

Um, so when I say in the area of response,

it's not getting people down the stairs if

they have wheelchairs and having them wait

in stairwells.

Uh, it is, uh, it under recovery uh making

it difficult for individuals, uh, with

communication, uh, disabilities to be able

to access, uh, certain, uh, disaster

recovery uh, services and activities.

So that's where historically we've seen

the disparity in disasters.

Uh, but what we are looking at a new age.

We're looking at a new kind of disaster,

this isn't about how do we get people out

of a hurricane and who goes first and who

gets left behind.

Uh, what we're talking about are really

those crisis standards of care, and I'll

define all that in a moment, that may

impact individuals in the healthcare

setting.

And, and we are seeing this right now in

the news.

If you are on CNN, and who isn't

right now?

If you're on CNN you will know that uh,

there is discussion about ventilators.

And who gets ventilators.

There's discussion about um, vaccines.

We know that a vaccine eventually,

uh, hopefully when we get a vaccine,

that uh, will manage this particular

uh, virus.

But, it is uh, pretty good bet we're not

going to have enough of those vaccines

right off the bat.

We saw this with H1N1, where we had a

medication that had not been approved by

the um, by the FDA, it was what we call

an e-way, and that means that it is a uh,

emergency use authorization medication.

Uh, that the federal government allowed to

have used during the H1N1, and that was

TamiFlu.

A lot of people don't know TamiFlu was

not approved at the time of um, H1N1.

Um, so we know that we probably won't have

enough resources to get us through

what we need to get through.

So the question becomes, is who gets those

resources?

Who gets the uh, vaccines?

Who gets the ventilators?

And we want to talk about that, because

this is very real world today and right

now and what's happening.

So let me go back a little bit, I'm going

to put my nurse hat on.

Um, or I'll put my legal hat on and my

nurse hat on at the same time.

And we'll talk about what we mean by

standard of care.

In the medical profession, we have

standards of care that are dictated by

professionals, and they define the norms

and requirements, um by which you

deliver care.

So, if I'm going to start an IV, I have a

standard by which I start the IV.

I have to use universal cautions, and I

have to, uh, wear gloves, and I have to do

a whole level of standards.

And these standards are defined and

developed by a lot of the agencies that uh

you're probably familiar with.

The American Medical Association,

the American Nurses Association.

uh, and on the federal level.

Uh, Center for Medicaid and Medicare,

[Inaudible]

they are the standard setting

organization for healthcare entities.

Whether you're a hospital or an ambulatory

care or dialysis center, um, CMS sets

those uh, regulations.

OSHA sets regulations for uh, health and

uh universal precautions.

Even FEMA has uh, some regulatory

requirements, uh, in the healthcare field.

Uh, you are required as a healthcare

entity to have certain plan in place.

Evacuation plans, emergency plans.

And those are all set by the national

government as well.

Um, we also have obviously the Americans

with Disabilities Act, uh, which regulates

how services, activities, and programs are

delivered equally and fairly to everyone.

Uh, we have the National uh, NIMS,

I'm sorry, this is a world of acronyms.

Uh, the National Incident Management

System, that talks about how we run

disasters.

And how, what's the system in place for

us to run disasters?

There are state laws, there is case law,

there is uh, what we call industry

standards.

Uh, Joint Commission and HRQ are two

industry standard setting entities that

set the standard of care.

So we really have well developed standards

of care for what we do on a day-to-day

basis.

And that, and that stuff's easy.

But what gets not easy is when you have

to deviate from the standards.

And when would you do that in a disaster?

Well, it's usually when you don't have

enough staff, enough stuff, or enough

room or space.

So that's when we get concerned about

"How are we going to do this?"

Well, in our current situation, not right

now, and with COVID-19, we absolutely

have a um deviation of standard of care.

Because we are talking about who is going

to get ventilators.

We do have some rules set in place in this

country related to standard of care.

We don't have that many rules about

deviating in disasters.

There are some exceptions, uh, an

exception is something that we call

granting of extraordinary powers.

So what that means is that on a day-to-day

basis, Public Health Departments cannot

come in and quarantine you.

We have constitutional rights in this

country, we have individual rights, and a

Public Health Department cannot just come

in and quarantine somebody.

However, in a disaster, there are

accepted deviations from that standard

that allows them to quarantine people.

We have things called Emergency

Declarations, and when a Governor or

President puts forth an emergency

declaration, this allows us the

opportunity to make different standards.

And those different standards might have

to do with uh, isolating people,

or curfews.

So we have those exceptions.

Uh, we have exceptions in disasters to

share personal health information, PHI.

Uh, and that is a deviation from HIPPA,

but that is a standard that is acceptable.

Can a healthcare facility, uh, get

bigger than it is?

If I'm a licensed hundred bed facility,

can I extend that?

Yes, yes you can.

You have to do waivers, but you can do

that.

That's an accepted deviation.

Another one that we commonly see is

waiver of licensures.

So can I as a nurse in Texas practice

in Louisiana?

Well, the answer is yes, I can.

Because there is a process in place called

Emergency Mutual Aid Compacts that

allow me to go and work in a neighboring

state.

We also can get, the federal program

also has a volunteer healthcare

professional emergency program where you

can volunteer and you can be deployed

federally.

And lastly we all, here's another example.

Is that I just spoke about this a moment

ago, and that's emergency use

authorizations.

So you can have a medication that is not

currently approved by the FDA and the

federal government can make an exception

and utilize a medication as an emergency

use authorization, if they feel that that

is acceptable.

And TamiFlu was the example that

I just gave.

But we're not talking about acceptable

deviations here, we're talking about

going from what we call convential care

to crisis care.

And what we mean by that is this is a

strategy for a healthcare system that may

be overwhelmed or under stress to

identify and select activities that it

wants to preserve.

And then allow less critical services to

degrade.

And we're seeing again this right now

in the United States.

Hospitals have uh, canceled elected

surgeries.

Hospitals have discharged people home

earlier than they usually would.

This is a system by which we um,

gracefully degrade, if you will use that

word, the services that we offer and

then make them go down to lesser services.

Uh, the the principal of this is that you

want to preserve the functions that are

critical to that organization's goal.

And a healthcare entities organizational

goal is to deliver healthcare to

individuals.

So when we look at this conventional to

what we are calling crisis standards,

and by crisis standards we mean a

substantial change in the healthcare's

operations and delivery of care which is

made necessary by a pervasive

catastrophic disaster, and we certainly

are in that right now.

And when you go to crisis standards,

you are deviating from a standard that

was established, as we just discussed

a little while ago uh by peers and rules

and regulations.

So this is what it looks like from a

healthcare perspective.

So if I'm a healthcare um, professional,

and I work in a healthcare, um, hospital,

let's say.

Um, on a day-to-day, given conventional

care means that I have enough space

to take care of my patients.

I have enough staff to take care of

my patients.

And I have enough supplies to take

care of my patients.

This is a usual standard of care.

We get, we get busy.

It's a Friday night in your ER, it's a

full moon on a weekend and it's

prom weekend.

We know that we are going to have

some stresses on our space, staff, and

stuff.

So, we go to what we call contingency

care.

Maybe we don't have all the space that

we need, but we can find a way within

our uh healthcare facility to still

deliver the care.

So we do that in the ER in a very

inventive way, we put patients in

the hall.

Now, do they still get the level of care?

Sure, I can give my um, my drunk teenager

a um, an emesis basin in, in the hallway,

and manage that just as well as I can

in a room.

But it is contingency care.

Maybe I don't have enough staff, so I'm

going to extend my staff, maybe bring

in additional staff.

That's contingency care.

Maybe I'm kind of getting low on supplies.

And are we not seeing that right now in

the COVID situation?

So we find ways to substitute, adapt,

conserve so that we have enough supplies

to be able to reuse them effectively and

give care.

That's contingency care.

And in hospitals we do this like I said,

all the time.

We get really busy, we get slammed, we get

a busload of people that turn over and we

have multiple, uh, injuries, we go to

contingency care.

But the next category is where I want to

focus on, and this is crisis standards.

And by this definition, it means that I

don't have enough space.

That I don't have enough staff.

And I don't have enough supplies.

And this current scenario that we are

in in this country, we're talking about

do hospitals have enough beds for these

individuals?

And surprisingly, the answer is probably

we do.

When we talk about running out of beds in

places like New York and uh, bed space

is very limited.

But the strategies that a lot of our

healthcare uh facilities have used to open

up beds, like getting people um out early,

canceling elective surgeries, is allowing

us at this current time in this country

by and large, other than in places like

New York, to manage that bed space.

That's not too bad.

Staff is a problem.

Do we have enough trained staff to be able

to get in those protective equipment and

take care of people?

We may, we may not.

It depends on where you're at.

But the critical area that we're looking

at is definitely supplies.

Uh, we do not have enough ventilators in

this country if this continues down the

road it does, that we are not going to

have issues.

And I'll talk about some of those numbers

in just a second.

But that's, I just wanted you to see what

the span of how we as a emergency um,

healthcare managers look at the care

that we're giving.

We go from conventional to contingency to

crisis.

And, I, this slide is a really old slide.

I've had this slide for about, I'd say

almost ten years.

Uh, when I first started looking at

pandemics.

And these numbers had to change.

The one I had to change was the number of

people, uh, we've had a few more people

in ten years.

But, these were statements that were

made and were true ten years ago.

That our hospitals tend to operate on

near capacity, and sometimes on surge.

That there is a prediction, this was a

prediction ten years ago, put this in

perspective today, this is a prediction

that was made ten years ago about

pandemics.

That there will not be enough staff,

medical supplies, or equipment.

That 85% of ventilators are currently in

use on any given day in the United States.

Supplemental oxygen will be in short

supply should we ever have a pandemic.

That no vaccine is presently available for

any emergence of a new viral entity.

Again, this was ten years ago.

15% of hospital admitted patients will

require intensive care.

75% or half of those admitted to ICU will

require ventilators.

And 70% of deaths related to pandemics

are projected to occur in hospitals.

Let me tell you how real those numbers

are.

Right now in this United States, if you

look at the average number of people that

are admitted to hospitals, 15-20% of them

that are admitted for COVID go into

the intensive care.

In some areas, it's higher than that.

It's higher, it's closer to 30-40% of

hospital admission patients with COVID

require, uh, intensive care.

In this country we are looking at about

a 60% rate of those who go into ICU

require ventilators.

So it's very interesting that predictions

that were made ten years ago, prove to

be valid even today.

Uh, the one that is interestingly uh and

sadly very real is the bullet about no

vaccines are presently available for any

emergence of a new viral.

That was ten years ago and we still

haven't fixed that problem.

This is not an area that the

pharmaceutical companies are working

hard on, and there's a lot of reasons

for that, um, don't have time to go into

it now, but antibiotics and antivirals

are not on the top of the list um, of

medications to be made by the

pharmaceutical companies.

Uh, Xanax and Viagra however are really

popular.

So, when we look at these numbers and

these statistics that were put forth about

ten years ago, and see that they're very

true, then we have to go back to if we

know that we're not going to have enough

staff, stuff, or space, how do we allocate

resources appropriately?

Like some of the key principles, and this

is out of the Insititute of Medicine

which has done a great deal of work on

allocation, scarce resources, and crisis

standards of care, looks at these

particular, um, key principles.

One is fairness.

Making decisions fairly and based on

science.

And we're going to talk about that in a

minute and how maybe that is problematic.

Duty to care.

We have a duty to plan as healthcare

providers, as healthcare systems, to plan

for shortfalls.

And I, unfortunately, I don't know that

we've done that great of a job in this

country to do that.

If we look at where we currently are

right now, um, more planning could have

been done.

We all absolutely have a duty to um,

steward our resources.

To be good stewards of the resources that

we have.

We need to be transparent about how

we allocate scare resources.

How we're delivering our care, and if we

deny care to somebody then we need to be

transparent, we need to be consistent in

how we make those decisions, and they

need to be proportional.

In other words, we only make the

absolute necessary changes that we

have to.

And lastly, we need accountability.

And that means be accountable to best

practices for making allocation decisions.

The problem that we currently have from

a legal standpoint, now I'm going to take

the nurse hat off, and put on my judges

robe, is that in this country, we don't

have set standards of care for crisis

standards.

We have them for the legal standard,

of how you start an IV, or how you um, uh,

insert a catheter.

But we don't have standards of care

set out, you can't open a book in this

country that says "these are the

acceptable deviations from care if you're

in crisis care".

We have some cases that have come out

um, from New Orleans.

We have uh, some best practice guidance

that's out there.

The Institute of Medicine uh in particular

is one of those that has, um, put out

some really good, uh, information.

But there is not what we call a bench book

that's opens it up and says "If you run

out of ventilators, here's how you

allocate ventilators and that's the

standard.".

We have guidance, we have recommendations,

but everybody is open to do their own

thing, and here's the problem.

So if I have one healthcare facility that

decides my criteria for excluding

somebody from getting care is the fact

that they're 90 years old.

And the hospital across the street says

my criteria is you can't get a ventilator

if you're over 80 years old.

If I'm 82, I know where I'm going.

So, there is different standards that are

out there, and this is problematic.

Uh, there is a case, uh, an article that

just came out recently um, with the um

Office of Civil Rights, uh, has made a

determination that it will drop its um,

concerns about a um, standard of care

that the state of Alabama had out which

said that it would, in looking at crisis

standards, would use as one criteria for

excluding somebody from getting care,

someone who was "severely retarded or

mentally ill".

That is problematic, because it, on it's

face violates the Americans with

Disabilities Act, obviously.

They're excluded simply because of their

disability.

And that's what we want to talk about.

Let's dive into this a little deeper.

So again, as I said, there is not in this

country a bench book or a law book

that you can open up, and it will tell you

how to allocate scare resources.

There are guidance, and so what the uh,

for example, the American uh Medical

Association and the Healthcare um,

Quality Guidance, says well if we've got

to look at who is gonna get care, who is

going to get ventilators, who is going to

get vaccines, here's the categories we

look at.

If I'm going to decide whether or not

you get something, I'm going to look at

a couple of criteria.

Number one, what is the likelihood and

duration of the benefit to you of getting

this medication?

Of getting this ventilator?

What is the change in your quality

of life?

What is the urgency you need?

Do I need it right now, or can I wait

a couple days?

This is an interesting one, and, and it's,

it's valid in how we look at scare

resources is how much resources will it

require for me to save your life or get

you on a ventilator?

What is your potential to return to

a baseline state?

Some of our models use age and functional

assessment, which is interesting right

now in this particular scenario because of

COVID, has tended to uh, be more uh

deadly for uh, people who are older.

And then the other one they look at,

and excuse my wrong comment there,

is the underlying health or prognosis of

the individual.

So if I'm standing in an ER as an

Emergency Department Doctor, and I'm

looking at three people, and I only have

one ventilator, if I use these criteria,

I'm going to look at these things and say

"Let's see, your underlying health

prognosis is poor, you're older.

Uh, you have less possibility to return

to a baseline state, you're going to

require more resources", who am I

defining here?

I'm potentially defining people with

chronic medical conditions and

disabilities.

So, from a medical standpoint, if I

showed this criteria to a healthcare

provider, and I ask them based on clinical

evidence, based on your decision making

process as a medical person, do you think

that this is a good criteria by which you

decide whether or not people will get

life saving services?

And the majority of medical people says

yes, this makes sense.

Why would I give medications or

ventilators to someone who has poor

underlying health, is not likely to

return to a baseline state, is going to

use the most of my resources, and has

a very uh, unlikely duration or

likelihood of benefit.

So taking again my medical hat off and

putting my legal hat on, I'm going to step

on the other side and say "Yeah,

but you're defining someone who has a

chronic medical condition".

Or you're potentially defining somebody

with a disability.

And that says a....

[People talking over each other]

The other uh, there's another criteria

that is looked at, and this is probably

much more medical, this is based strictly

on looking at the um, likelihood of

mortality or morbidity for someone, uh,

based on their uh, medical conditon.

This doesn't look at how many resources

you're going to use, it doesn't look at

your age.

It looks simply at, your um, possibility

of being able to survive based on your

medical condition.

And so if you look at someone, and they

take into account people's respiratory

status, people's coagulation ability,

their liver function, their

cardiovascular function, their central

nervous system function, their renal

function.

Are they in renal failure?

Are they in liver failure?

The higher the score is on the problems

they have, the higher the likelihood of

mortality, and that puts them on the

lower end of receiving life-saving or

scarce resources.

So that's kind of what's out there right

now in the medical community as

guidance for how we look at how we

allocate resources.

And, and unfortunately, I don't see

in these decision making processes and

these conversations, I don't see a lot

of disability advocates, I don't see a lot

of uh, whole community involvement

in this process of understanding uh,

that people that are going to be most

affected by this decision making process

are not sitting at the table.

We've got a lot of medical people, we've

got really smart medical people there,

but that doesn't, uh, that is not a whole

community approach.

Because they don't understand a lot of

times the implications that this has to

individuals and how it discriminates

against an individual just because they

have a disability, or they may be older.

So, we want to look at some potential

strategies to improve equity, and to

ensure that uh, there is a whole

community approach to this.

We're going back to uh, the Institute of

Medicine, and it makes recommendations

to the healthcare entities.

But if you're sitting having

conversations, and I will tell you folks

right now, that these conversations are

going on right now in hospitals all over

the United States.

I've had multiple calls from um,

healthcare coalitons, from healthcare

systems, who ask "What criteria do I set?

Where is the information I need to make

these decisions?".

And, IOM talks about things like

obviously you want to employ ethical

considerations.

They can't be about, they have to be fair.

Those are ethical considerations that

I mentioned before.

Being transparent, being consistent,

being fair.

Uh, and then the other problem that,

that concerns us is that when you're

developing individual standards at

individual levels, that means every crisis

at one location is determined differently

than another location.

And some of you may have heard about uh,

Hurricane Katrina and Memorial Medical

Hospital, where um doctors made decisions

about uh, getting uh medications to ease

the suffering of some of the patients they

were going to have to leave behind, those

patients died, and the conversation about

why did you make those decisions, and what

were those decisions you made when there

was a hospital right next to Memorial

Medical that was in exactly the same

situation, made different decisions,

and nobody died.

So we also look at clear legal

authorities.

Making sure you understand your legal

background and your legal landscape.

That you establish clear indicators and

triggers, and you have evidence-based

processes.

That we have evidence that we can go by,

because again, if you're sitting in my

court, and I'm making a determination

about why did you decide to do this,

why did you do what you did, it has to

be based on clinical processes.

And lastly, community and provider

engagement, education, and uh,

communication.

So, bringing the whole community in

to the team.

Participating in ethical consortiums,

that means healthcare coalitons.

Uh, hospitals have ethic teams.

They should have, uh, representatives

from the disability community involved.

Discussing those potential issues so that

the healthcare side can understand the

concerns and complications that could

arise.

And then educating effective populations

about these issues.

Cause this is not a conversation we're

having, and we're not having it enough.

This is an unprecedented situation,

we have never been in a situation before

that we are in today.

We know that it's not going to get better,

it's going to get worse, and then it's

going to get better.

And we're going to continue to have

pandemics.

There is some prediction that this

pandemic may come back in the um, fall

when the weather is once again bad.

So we have to think about how we're going

to plan to ensure ethical issues of health

equity are discussed, and all of the

participants that need to be involved in

it are involved in it, and use a whole

community approach to bring in all the

members of the community who are

effected by this.

Not just people with disabilities, the

whole community.

So I'm going to turn this back to June,

uh it's her turn, and uh, thank you for

the time that you let me spend with you.

I'll give it to June.

>> JUNE KAILES: Okay, well Dee, that was

uh, thank you, that was excellent.

And it was sobering to say the least,

but it really did bring into sharper

focus the details of these altered

standards of care.

You know you mentioned that book,

uh, Five Days At Memorial, I do recommend

it for any of you who are interested in

a deep and another sobering picture of

what happened during Katrina.

So, it's called Five Days at Memorial.

So I just want to spend a few more

minutes focusing on planning for our

own self-preservation, in terms of a

hospital stay and our strategies.

Um, and then we'll get to lots of your

questions and discussion.

So, some good news here is that there

have been quite a few legal challenges

lately that have successfully um,

challenged states with healthcare system

policies that explicitly use the

existence of disability as a criteria for

de-prioritizing an individual for life

saving care.

So, there have been some major

dents, successes, and one is um, this

first bullet on the slide which is the

uh, Department of HHS, Health and Human

Services, in response to one of these

formal legal complaints, from disability

advocates, they issued guidance that

hospitals cannot raise, can't ration

treatment based on disability status.

But, I think we all know, we're not

naive, that um, that's not enough to

ensure that there won't be

discrimination.

So there's been uh, lots of activity

in this space, over the last, oh, month.

And um, I think uh, I'll go back to slide

two, slide one here, sorry.

Um, there's been a lot of work, on Friday

of last week AAPD did an excellent

seminar on this, and the recording and

transcript is a link in the slides that

you will get soon, and as well as um,

a link bullet too.

So all of these complaints have been aimed

at enforcing what disability

discrimination laws require for healthcare

systems to make sure that they're not

acting with bias and that they're not

underestimating the quality of a life

just because they're dealing with people

with disabilities.

And that they're not making um,

individualized decisions based on implicit

bias, but on more objective evidence.

So at the end of my slide deck, there are

two more, um slides on rationing related

resources um, and they are appearing

fast and furiously so, I've not been able

to keep up with all the resources, but

at least it'll give you a sense of what,

what's out there.

So in terms of our self-preservation,

um, many of us have encountered disability

related problems and implicit bias.

Implicit disability bias when we're in

the hospital.

We need to focus on understanding that,

as Dee explained, in this chaotic COVID-19

hospital environment, um, we've got to

thing through strategies regarding

planning for a hospital stay, when

business is really far from usual.

So our rigorous advocacy, rightly so,

has been focused on keeping us out of

the hospital.

Planning for avoiding getting sick,

and when needed managing being sick

at home.

And maybe even getting that oxygen needed

at home if we can.

So, over planning is good.

You know, including planning for the

worst case, which is needing to go to the

hospital.

So on slide two, oops, why does this keep

happening to my slides here?

Slide two, slide two.

Um, so preparing for dealing with staff

that may hold those disability biases and

uh, about the quality of our life, you

need to really think about worst case

scenario, having a hospital survival plan.

Plan for being you know, unable to think

or communicate clearly, um, cause you

need to count on, if you need to go to

the hospital, you are really sick.

Um, and what we've learned is that with

this virus, getting real sick tends to

come on very very quickly.

It's not, not gradual.

People go from just sick to real sick.

So one of the things that we're

recommending is that given the infection

prevention rules, you probably won't be

without your usual support team, so check

ahead of time on your policies of the

hospital that you may have to go to

regarding policies allowing someone to

go with you.

They tend to vary considerably, sometimes

it can be challenged in terms of you

needing an accommodation, but frankly

they're all over the place.

So, one critical strategy is having a

contact list that you can bring with

you, a hard copy where you list in

priority order the cell phone number with

text capability of your um, contacts.

Your advocates, people you've discussed

with what you want done.

People who can remotely advocate for you,

counter implicit bias, and people who

understand your advance directives.

You need to also put together for the

worst-case scenario a grab and go

hospital bag kit.

And you need to do this um, now,

because when the time comes, you're not

going to be up to doing this.

So do it when you're sharp, when you're

well, when you can think clearly.

So in this kit, in this grab and go

thing, um, uh, a real critical piece of

advice is put um, hard copies of what I'll

go through real quick in a Ziploc bag that

you can attach a string to and put it

around your wrist or around your neck,

because things quickly disappear in

hospitals, and you want that available to

you.

So in your hard copies, what you'll take

with you, besides the usual health

insurance cards, ID, Drivers License,

copy whatever, um, on slide two number

one here is create your emergency

medical information, what's your critical

healthcare information?

Your medications, equipment needed,

allergies, communication needs, um,

medical providers, advance directives,

etc.

Another thing that you may not have

thought of, but it may be critical is

for those of you who have been a visitor

or a patient in a hospital, you often see

signage above the bed of a patient, it'll

say something like you know, "Fall Risk"

or "Diabetic" or whatever, but um, create

your own signage that they can post.

Um, for example, call Marci at this number

she can talk for me.

Or I'm Hard of Hearing, or Blind.

The other thing is to have some

communication sheets um, preferably in a

plastic sleeve, and I'll go over those in

a minute.

Um, keep the stuff close to you in a bag

so it doesn't get lost.

Um, keep your cell phone close in a bag,

so it doesn't get lost.

Again, preferably on a leash around your

neck or your wrist because again, things

disappear.

Bring your medications, even though

sometimes they won't, they won't use

them, you'll still be comfortable having

them.

And bring a sharpie.

Write on your skin before you go

anything critical.

Like "diabetic" or "blind" or whatever.

Bring your phone chargers.

Um, now on this slide two, number two

and number three are excellent resources

with the links that you can access later.

These are very current good advice,

uh, kinds of documents for people with

disabilities during COVID-19.

Really excellent, uh survival strategies.

So I urge you to look at all of them,

they're very very good.

The other thing I want to uh, just

highlight real quick is bring

communication tools that will work

for you.

If you're on oxygen and in an ICU,

you indeed may still be able to

communicate, but if you're on a

ventilator, then you will not be able

to communicate.

So I included just a sample, a variety of

communication tools, and these are some

of the links where you can get more

information, but basically these are tools

that um allow you to point in terms of

communication, or allow somebody,

a healthcare worker, to help you

communicate.

There are "Yes/No" tools, and again,

good instructions for the healthcare

worker to help you use the sheet.

If you're unable to point, or you're not

able to indicate with a yes or a no,

using a blink system or a finger system,

um.

So just a variety of really good kinds of

tools.

Pick the ones that work for you.

There's just a variety here.

I'm not going to narrate them all.

This is a word board, I mean a letter

board where you can spell out key words.

Um, I like this one, this is a blank

one, but you can put your own

messages in to them, so I was just

playing around by "Need my phone",

or "Call Marcie", or "need my glasses"

or if I'm on a ventilator, chances are I'm

maybe kind of out of it, or in some kind

of sleep state, or maybe on Propofol.

But if I can communicate, you know,

customize your uh, messages that you

anticipate.

You know "my back hurts", "change my

position", "I need the call button",

"I need an ASL Interpreter", whatever.

Um, and at the end of these slides are

just a bunch of other resources, again

they keep reoccurring, but um, they are

uh, really important to look over.

And again, back to those communication

tools for a minute.

I recommend that if you can, make several

copies of the ones you like, put them in

a plastic sleeve, remember those old um,

sleeves we used to use when we'd make

transparencies for slides, uh you can use

those, you can use Ziploc bags, but uh,

whatever works.

And Sarah Blackstone who I got many of

these from may want to comment about

these more, uh, during our discussion.

So, um, I think that's it, and uh, Megan

I'm going to turn it back to you.

I think we're ready for discussion,

and um I know that people can raise

their hands in chat, or can dial 9 to

raise your hand if you're on the phone.

And if you're called upon and you,

oh it's *9 to raise your hand on the phone

*6 to unmute your line, and um, there's

a raise your hand I think in the chat

part, in the chat area.

So...

>> MEGAN COWDELL: Great June, yeah that

is correct.

This is Megan again at CFILC, so if you

guys uh would like to ask any questions

verbally, it is uh *9 to raise your hand,

or if you're on the computer, uh if you

hit the manage participants button,

or I'm sorry, view participants, there

will be a raise hand button um, that will

show underneath the participants,

or you can use the Alt key with the Y key

at the same time, so Alt+Y.

But we do have some questions that have

already come through.

There's been a lot of discussion, so let

me go ahead and read some of those back.

Um, Ruthie wants, uh commented, she said

"The rush to judgment by this

administration in determining what drugs

are to be handed out and the decision by

non-doctors appears to have a collateral

damage projection they are not mindful of.

Is this an acceptable application of the

emergency alternate use of medication?".

>> DEE GRIMM: This is Dee, uh I'll jump

in and try not to um, be too political.

Us judges aren't allowed to do that.

Um, however, um, when we went back,

to what we talked about earlier about

our duty to plan and our duty to be

prepared, we have seen unfortunately

multiple examples of the federal

government's inability to access uh,

resources that are available.

We keep in this country something called

a Strategic National Stockpile, that is

available, it has things like ventilators

and medications, not necessarily ones

that are applicable for here.

But it has resources, and it has shown

that it has been very slow to how it

moves, and uh how it manages that

process.

Um, I agree with you, and it's not just

because I'm a nurse, but I agree with you

that there needs to be uh, the right

professionals in the room when decisions

are being made about medical care,

and I've not always seen that.

So, if that's a good legal answer that

didn't really answer anything, that's um,

that's my viewpoint on how I'm seeing

things coming through this country

right now.

>> MEGAN COWDELL: Great, thank you Dee.

Uh, we have another question here from

Lilibeth, uh she wants to know if you

have any suggestions on how to join the

panels or get involved as the decision

maker about the protocols hospitals

have in place.

>> DEE GRIMM: Well, I can speak to this,

but I think June also can speak to this

as well, because June happens to be one of

the great examples uh, that I know of

of somebody who has made their way,

into the emergency management forum.

Uh, into the emergency management realm,

and has taken the disability, uh, issues

and considerations into that arena.

Uh, so she can probably speak to this much

better.

But it is being aware of what your legal

landscape is.

Who makes the rules about emergency

management in your jurisdiction?

Do you know who your emergency managers

in your uh, county or city are?

Most people don't even know who

that person is.

Most people don't know that, uh, a lot

of your emergency management, uh, programs

they have, do require that they have

people from the community sit on those

boards and sit on those, um, different um

organizations.

So again, understanding what you have in

your community, what kind of programs,

and who runs those programs, and who does

the emergency management is a good way

of interjecting yourself in there.

And the same way with your healthcare,

uh, situations.

It's uh, most communities have healthcare

coalitions, and on those healthcare

coalitions, sit a lot of different people,

and that's a good way to get in.

>> JUNE KAILES: So Dee, I would just

add to Lilibeth's question and throw it

back to you.

In terms of these altered standards of

care, and being at the right table to

impact the triage teams protocols during

these difficult times and to prevent some

of these implicit biases from rearing

their ugly head.

It seems difficult to get to each

different hospital table to do this

during a time where we've got multiple

balls in the air in terms of our

advocacy bandwith.

So I throw it back to you, you know how

do we achieve the biggest bang for the

buck given limited bandwith, and not able

to get to every single triage team table

at every hospital?

>> DEE GRIMM: Really good point.

Um, we have such diversity in this

country.

Uh, we have rural settings, we have very

urban settings, and you're right, the

bandwith is very limited.

One of the things that I find troubling

is that we have had so little discussion

about this issue, that they are having

conversations at the hospital level.

And frankly that is not the level that

this conversation should happen.

Because again as I said, we have hospital

A has one criteria, and hospital B has

another criteria, how do you determine

which one is the correct criteria?

Is one more fair than the other?

Is one more equitable?

And when you're doing it at that level,

that is not how you make guidance for

the nation.

Um, quite frankly, the conversation about

crisis standards of care need to be at

the state and federal level.

Because the state can set tone,

the federal government can set tone,

but when you have each individual

hospital setting tone for what they think

is fair or unfair, is right or not right,

you're going to get Memorial Medical

Hospital in New Orleans all over again.

So um, I think it needs to start at the

state level, I think that if you have uh

representation at the state level that's

a good place to be, because that's where

your voice is most likely to be heard.

>> MEGAN COWDELL: Thank you, Dee.

Uh, we do have a couple more questions

that have come through.

Uh, so Margaret wants to know "What can

we do to prevent hospital staff from

taking ventilators away from people with

disabilities who are long term vent users

and giving them to people who are

judged to be more worthy?".

Dee, it looks like you're muted, we're not

hearing you.

>> DEE GRIMM: Well, I'd get a real big

stick, and I would carry it with me if I

could to the hospital.

Um, again, this, this is conversations

that it's difficult to have at the local

level.

When you're walking into a hospital

trying to explain to a very frazzled

nurse, um who doesn't understand any of

these issues, doesn't understand about

your disability, uh, doesn't understand

that you're not, your disability is not

the same as other people's disabilities,

is really not the time to have that

conversation, because you're not going

to win.

The time to have the conversation is

again, at a higher level, at the decision

maker level, because that, that nurse,

that hospital, probably doesn't have

the, the ability to make that decision on

an individual basis.

Again, we need to do this at a higher

level, we're talking to people who can

make the change, understand the issues.

Uh, and one hospital setting that can do

that is their Ethics Committee.

Almost every single hospital has an Ethics

Committee.

And, if and this is just a recommendation,

if you went into a facility, and they told

you "You cannot bring your caretaker with

you because we're not allowing anybody to

come in", or you can't take some piece of

equipment, or uh, assistive device that

you need, because they can't clean it or

whatever they're worried about,

contamination, um, I would as a

advocate, as a patient advocate, I would

say that the patient should ask the

hospital to convene their Ethics

Committee.

Cause the Ethics Committee hears these

individual cases, and it's your

opportunity at that point to make that

argument and make the case for why you're

not doing this equitably, or you're not

being transparent, whatever the issue is.

Every hospital has to have an Ethics

Committee.

>> MEGAN COWDELL: Thank you, Dee.

Our next question comes from Lisa, uh,

she says "How are advance directives

factored into crisis care? If an advance

directive states a person chooses not to

have extraordinary life saving measures

taken, I doubt they were thinking about

how this would play out in a pandemic.

Are hospital workers disproportionately

asking for advance directives from

people with disabilities?"

>> DEE GRIMM: Uh, hopefully not.

Uh, it is a requirement that every person

who comes into a healthcare facility,

regardless of disability, uh, medical

condition gets asked "Do you have an

advance directive?".

And so that should be applied equally

across the board when patients come in.

Do you have an advance directive?

And if you do, we need a copy of it.

Uh, I personally have not heard of cases

where uh, healthcare entities are pushing

advance directives on people with

disabilities, I would not doubt that there

are conversations going on, especially in

New York, about people that the medical

um, personnel are looking at and saying

"Your overall health, going off that SOFA

score that we just talked about, your

overall health and your underlying

conditions put you at a um, higher

number on the SOFA score", and that SOFA

score means that you have less of a

likelihood of surviving this, that is,

I would not be surprised if they're

having those conversations.

But I would be very disheartened if I

was hearing that healthcare providers

were pushing advance directives on

people with disabilities.

I would hope that's not happened.

>> MEGAN COWDELL: Thank you.

Um, and again for folks that have more

questions, please feel free to put them

in the chat or raise your hand on Zoom.

Uh, it's *9 or Alt+Y to raise your hand.

Uh, we have a couple questions and

comments here from Lilibeth.

Uh, first one is "Do the hospitals have

communication devices?"

>> DEE GRIMM: Well, yes and no.

To the extent of having the assistive

technology, uh, that we're accustomed

to having, uh, no.

They, they don't.

They have limited picture boards.

Uh, they of course have access to

interpreter and translator services,

uh, but uh the assistive technology

is very limited in most facilities.

>> MEGAN COWDELL: Thank you!

And then her other question or comment is

"Uh, would going to the AMA Chapters

and or Nurse's Associations be a good

addition, uh, to the strategy I think of

bringing disability to the discussion?"

>> DEE GRIMM: I uh, absolutely think so.

Any opportunity that you have to raise

your voice, to any entity that makes the

guidelines.

Uh, again, the Institute of Medicine um,

is a premier area that's setting guidance.

But uh, as far as conversation about

standards, the American Medical

Association, the American Nurse's

Association, uh any of the associations

for trauma doctors, all of those entities

that do uh, accreditation and

certification, any access you have to

talking to them is helpful.

>> MEGAN COWDELL: Thank you.

Uh, we have a few more questions that

have come in, while I get those sorted,

Sarah Blackstone uh, you have your hand

up, so please go ahead.

>> SARAH BLACKSTONE: I actually have a,

a comment or two.

Uh, I've been involved in the development

of that patient-provider communication

uh, materials that's located on the

website.

And one comment I want to make is that

uh, the people that have been involved

in doing that represent um, well it's

an interprofessional effort, and so

there are nurses, and there are speech

pathologists, and there's engineers,

and there's psychologists that have been

involved in putting those materials

together.

And they're evolving as well.

And one area that we haven't quite

put up yet, but uh there is some material

about medical decision making, um,

that's up there already, but there's going

to be more materials available.

And also, many of the materials are

available in multiple languages.

So, um the communication issues that can

confront individuals in this COVID

environment, um, it makes everybody

equal, because the right to communicate

and the difficulty that people who have

COVID have in communicating is shared,

uh, because of the difficulty not only

in patients being unable to use their

natural speech, but also because nurses

are dressed fairly um, extensively,

which means it's very difficult to

understand what they are saying, and

communication is the joint establishment

of meaning, so that it's quite helpful to

have um, other ways of communicating

in the intensive care environment, or

even in the hospital.

And I just want to follow-up on what June

said, which is really you can't predict,

but you can prepare.

So that I think any of us can prepare

uh, to take with us if we have to go in

the hospital, or we have to be at home,

um, to, to prepare for the fact that it

might be very difficult to communicate

with individuals who are taking care

of you.

And that the likelihood of you having

access to anybody who knows you is

extremely slim, given the conditions that

that people are now, um, under in

hospitals.

>> DEE GRIMM: That's very true, that's

a very good point.

>> MEGAN COWDELL: Thank you, Sarah.

Uh, this is Megan, we have about twenty

minutes left.

Uh, we have a follow-up question

here actually from June.

Uh, she says "During the chaos of

COVID-19, will the hospital actually have

time to convene their Ethics Committee?"

>> DEE GRIMM: Again, I think that it is

situational.

I have not, again, New York City is such

a um, outlier for what we're seeing as to,

as far as the numbers are concerned.

They have just been so overwhelmed.

And you're right, it is a um, it's

difficult in times of disasters um, to

know what services that there are still

going to be around.

I would bet however that of the essential

services that hospitals have right now,

one of them that they totally want to

keep is their Ethics Committee.

Because it isn't just this ethics uh issue.

We have ethics issues all down the road

here, uh, and it's related to are we

going to have enough blood services?

We are short on blood right now, so how

is the hospital making decisions about

who gets blood?

Uh, how is the hospital making a

decision about uh, if a staff member

gets sick.

So the Ethics Committee has a pretty

heavy lift right now, uh, in this

particular situation.

So I would think they would be more

prone, if I was a hospital administrator,

I would want my Ethics Committee at

my side, or at least a phone call away

for all of these issues, not just this

particular one.

>> MEGAN COWDELL: Thank you.

Uh, we have a question here from Meg.

Uh, she says "Can you describe the ethics

of how the triage team is composed and

involved in scare resource allocation

decisions?"

>> DEE GRIMM: So, um, when, when we talk

about triage in extraordinary

circumstances, we have two kinds of

triage.

We have triage that on a day-to-day basis

you walk into my ED, and you're having

chest pain, and um, you're a little blue,

and it's going up the right side of your

arm, I'm probably going to make you a

number one red, you're my red patient.

In disasters, when we have again, either

limited time or limited resources, we tend

to make decisions in triage based on

most survivability.

Frankly that's a military model, it comes

from years of experience.

So what that means is that if there's an

airline crash, and I go out there as a

paramedic, uh, and you are not breathing,

I may be able to stop and give you CPR,

but I'm not going to.

Because A, your survivability is one

of the least.

And B because I have 100 other people

that I have to take care of, and I need

to triage you according to your best

survivability.

So when you talk about the triage process

in crisis standards, what we are truly

looking at is how do we make the best use

of the resources we have to the people

that are most survivable.

And that's where you get into that tricky

models of what does that look like?

Does that look like the SOFA score

that I talked about?

Or does it look like the AMA model that

considers social issues such a quality

of life?

Quality of life for everybody is so

individual.

But we make assumptions in the

healthcare community.

If you talk to a number of doctors in a

hospital, and you talk to about quality

of life of someone with a severe

disability, they may see it from a

medical standpoint, and say "No, I

wouldn't want to live in a wheelchair

on a breathing tube. There's no quality

of life there".

But if you talk to the person in the

wheelchair, their definition of quality

of life is different.

So when you're looking at it two different

eyes to what is essential and critical,

and what is those other determinants

in quality, they are very different

depending on who is looking at it.

>> MEGAN COWDELL: Thank you, Dee.

Um, and I think to tag onto that, uh,

Meg also asked "June, could you provide

a brief overview of emergency operation

plans, ESF8, and pandemic flu components?"

>> JUNE KAILES: This is June.

Sure, I can, do you have uh the rest

of the day, for that?

[LAUGHTER]

Um, you know ESF8, um, is uh a health

and medical, and you know, I, I'm not

able to really address the full scope of

that question, but I can tell you that

as an advocate, and as with other

advocates, our first question about ESF8

is that it's very hospital-based, and the

majority of us are dealing with health

issues in the community.

And because of that, we've had some real

gaps in the way, you know, we apply the

kinds of services that are needed right

now so that we can avoid

institutionalization in hospitals.

So, that's one of our major frustrations.

I'm unable at this point Meg to go deep

with the rest of your question, but um,

I would wager a guess, and Dee, you might

want to pipe in, that there will be a

scarcity of standard of care issues in

ESF8, but over to you Dee, anything to

add to that?

>> DEE GRIMM: Sure, and June's absolutely

right, we don't have all day we can talk

about this.

Um, what, what you're referring to for

the other folks who aren't real

familiar, ESF8 is an essential or

emergency support function by which

the government, uh, categorizes the

functions that are critical in disasters.

And ESF8 is Public Health and Medical.

And, it designates that rules, or the

responsibility of public health to manage

medical and public health and mass

fatality uh, disasters in um, in disasters

to the Public Health Department.

And everything falls under that.

And again, these are the people that

should be having these conversations,

and unfortunately they're not.

>> MEGAN COWDELL: Thank you, uh this is

Megan again.

Uh, Lilibeth is asking, "In the hospital

chaos we need the support of our

personal care assistants, because most of

us are often put to the side until

they're ready for us. Are we allowed

to bring personal care assistants or

have them with us?"

>> DEE GRIMM: That's a great question.

And uh, uh, one of my peers who is also

on this call, uh, was telling me a story

um, just the other day about an

individual that she spoke with uh, who

had been told that he would not be

permitted to bring his caretaker with him

to uh, into the hospital.

Uh, again, we need to advocate and help

the hospitals to understand that the

role of that caretaker, what they provide

for us that the hospital cannot.

And uh, again, this is an example where

if I had the ability to um, request that

the hospital uh, Ethics Committee convene,

so that they can consider this matter,

then this would maybe be an example of

doing that.

>> MEGAN COWDELL: Thank you, Dee.

Uh, we have another question here from

Todd, uh, he says "Dee, advocates across

the nation want to have some kind of

access to the patient while in the

hospital. From in-person to electronic,

what can we ask our states to consider

as a policy for patient rights?"

>> DEE GRIMM: I, I just think there's so

much conversation, there's so much noise

going on right now at the state level,

at the government level, that hearing uh,

hearing another um side of the story is

going to be very difficult.

Um, and having that voice in the middle of

a disaster is so hard, um, because to

a lot of the officials and a lot of the

people making decisions, it's just one

more voice.

Uh, and again, it's going back to

talking about these conversations need

to happen before the disaster.

Um, these conversations need to have

been discussed before the emergency,

and it's very hard to get that message

to people right now.

And this is just so reactive, we see this

all the time in history.

Uh, when we have situations where people

identify there's a discriminatory practice

and it's happening right now, and we can't

discuss it until after it happens, and

that's problematic.

>> JUNE KAILES: Dee, I want to add or ask

you more about Todd's question.

Um, what's the reality of our

expectation that a healthcare worker would

be able to help us dial the phone,

for example, if I wanted to talk to my

advocate Todd.

What's the reality of that kind of thing

happening?

>> DEE GRIMM: Um, without there being

a COVID situation, has anybody been

hospitalized lately?

If you have, you know that on a good day,

it's hard to get someone to come into

your room and help you with things.

I would, I would magnify and amplify that

by, exponentially right now.

That um idea that in some locations,

especially in the uh higher acuity areas

like New York, getting people just to be

seen and admitted and taken care of

much less providing additional services.

Which is the conundrum, this is a time

where you would need your healthcare,

uh, I mean this is a time where you need

your caretaker or your personal assistant

more than any other time.

And it makes sense from a nursing

standpoint.

If you came in and you had your caretaker

with you, you've just made my life easier.

Because I don't have to come and run in

your room and help you uh, eat.

Or help you get to the toilet.

If you have somebody who does it,

this is a model that is done repeatedly

in other countries.

It's very common in other countries that

family members help take care of the

family.

Uh, that the daughter or son come in and

help feed the family member.

Uh, help them with their activities of

daily living.

And we've failed miserably in this country

in doing that.

Because it just makes everybody's life

harder.

>> MEGAN COWDELL: Thank you, uh Dee.

And this, this is Megan again, we have

about ten minutes left here.

Uh, June put a really great question in

the chat, she said "I've heard very

little about the role of healthcare

coalitions during COVID-19.

Can you share with us any success stories

or at least what they should be doing?"

>> DEE GRIMM: That, that actually is a

great question because it goes back to

what we were talking about before.

If healthcare entities on an individual

basis for making decisions, then those

decisions are going to vary from facility

to facility.

Again, we need to look at this on a much

larger scale.

And healthcare coalitions are the perfect

place to do this.

Because healthcare coalitions have the ear

of all of the hospitals, they have the ear

of all of the Public Health folks that

are sitting in the room.

They have the ear of all the members

that are sitting in the room as part

of the coalition.

So it's an excellent opportunity for all

of the healthcare facilities to hear the

same message.

It's an excellent opportunity for all of

the healthcare facilities to be able to

express their concerns and healthcare

coalitions have people sitting at the

table that can make decisions.

Whereas they might not be able to make

decisions on the individual uh, hospital

level.

So absolutely, healthcare coalitions need

to be the place where we start this

dialogue, and have that dialogue.

And it's actually in a lot of the

guidance for healthcare coalitions.

They are actually required, in something

called the Eft requirements, the Public

Health Emergency Preparedness, and the

hospital preparedness program.

In order to get funding for your

healthcare facilities, and for healthcare

coalitions, they are required to have

plans for this.

And in the language of those

requirements, it uses the word, uh talks

about uh, altered standards.

And it talks about planning for people

with disabilities, and planning for um

vulnerable populations such as children

and elderly and people with medical

conditions.

That language is already in there that

those healthcare coalitions are supposed

to be doing this planning.

>> MEGAN COWDELL: Uh, this is Megan again.

We have another uh, follow-up question

from Todd.

Uh, he says "Independent Living Center

uh, staff, can enter skilled nursing

facilities during non-pandemics to

advocate for patients. What about now,

and also including hospitals?"

>> DEE GRIMM: Well, um.

I, I would be very surprised if that

exception was still permitted at this

point in time in nursing facilities.

Uh, there is such a restriction.

And we haven't even talked about skilled

uh, nursing facilities, who are struggling

so much more than hospitals are.

Uh, because they don't have reserves of

staff.

Because they don't have the reserves of

supplies.

They are truly struggling uh, with

infection control because of the kind of

congregate settings that their patients

are in.

You can be in a private room, and or,

or a room with two people in a hospital,

uh healthcare settings have much more

congregate settings, and that is one of

the reasons there's so much exposure

and so much contamination that we're

seeing right now in some of these

facilities that have almost everyone in

the facility ill and the staff ill.

It is, they don't have the isolation

capabilities that hospitals do.

So, my answer would probably be in

this particular setting in this

environment today, that is probably not

happening, there is probably not uh,

permission being given to have folks

come in that are not uh, either the

patient or a direct family.

Even direct families are not being

permitted in many facilities.

>> MEGAN COWDELL: Thank you, Dee.

Uh, and we have about seven minutes left

here.

Meg has a rather long question in the chat.

Um, it's about the HHS guidance on

optimizing ventilators.

Um, and she wants to know "If we might

receive a lower standard of care um,

for people that are expected to use

personal equipment and not given the

ICU ventilator".

>> DEE GRIMM: So, that's a great question.

And I've been reading some uh, guidance

on that.

And uh, there have been some

recommendations.

There's been a lot of uh, ideas about

how do we maximize ventilators?

And there's some good strategies.

Uh, for example uh, people that are on

ventilators often are on telemetry

machines, and uh, you have to monitor

their blood gasses, and uh, you have to

have them on O2 censors.

And there's a lot of conversation about

how we can use a little less technology

uh, on that.

And maybe instead of using a telemetry

machine, having the person on a pulse ox

that tells you that if their oxygen level

goes down, they've got a problem.

So you, so you save some machinery.

Uh, the problem that we're looking at

that a lot of discussions is going on

about is can we uh, either use, double

up on ventilators?

That's the biggest thing that's coming

out right now.

Let's double up on a ventilator.

Put two people on a ventilator.

Is that possible?

Absolutely! You can take uh, Y Tubing,

and you could crank up the, what we call

the peak, and you can crank up the, the

O2 levels, and you could put two people

on a ventilator.

Is it a good idea?

Absolutely not, there are so many

problems with cohorting on a ventilator.

The least of which is passing, uh,

diseases uh, to each other.

The, you no longer can put a ventilator

to uh, just one setting for one person.

So you may be over ventilating one

person, and under ventilating another.

So that whole issues of how we can

maximize ventilators is very tricky

right now.

Uh, and again, the, some of the

conversations are "Well maybe we just

need to make criteria for who gets a

ventilator and who doesn't".

>> MEGAN COWDELL: And tagging on to that

Dee, uh, Lilibeth uh has a question.

She says "If we already have our own

ventilator at night, can we bring them

to the hospital while we're being

treated?"

>> DEE GRIMM: If you were coming to my

hospital, I would tell you absolutely!

If you've got your own stuff, why would

I want you to not use your stuff and only

use my stuff?

Um, I think that makes great sense.

However, I would say that many of your

hospitals have not reached that level

of free-thinking and would allow you

to do that.

That is a good question I've not had that

presented to me, and um, that would be a

really good thing to ask your healthcare

folks.

I can, I would say from a risk management

perspective, that if they can control

management, they would have issues with

that.

But frankly, there are some things that

we need to let go of in this scenario.

And infection control is one of those

things that we really should be looking at

and how we can manage the infection

control issues, so that we can maximize

using our resources.

>> MEGAN COWDELL: Thank you.

And it looks like we uh, have somebody

with their hand raised, and we should

have time for just one more question.

So if your phone number ends in 9511,

please go ahead.

>> Hi yes, I was just wondering is the

risk of the ventilators like, your

personal ventilator being reallocated if

you do take it with you to the hospital,

um, if they determine there's someone

that they think should be receiving the

treatment beyond you, or above you?

>> DEE GRIMM: Uh, I would hope not.

Uh, there are from, from so many

perspectives, that's wrong.

It's wrong from the perspective of

ownership.

Uh, it's wrong from the perspective of

if they're using your ventilator, uh what

are you on?

Uh, that's concerning.

But I would think from an infection

control, simply from an infection control

uh, standpoint, that is not a good

infection practice.

There is no way that they could deep clean

that uh, ventilator well enough to

satisfy them that um, one person on it

going to another one, uh, to be totally

sure about that.

I think that would be prohibited from an

infection standpoint.

>> JUNE KAILES: Dee, I want to add that

uh, we have heard some reports of that,

how true they are, I don't know.

But, Megan, I just wanted to take an

opportunity to uh, close and thank

um, thank Dee for a great job in

helping us to think about our next

advocacy steps and shedding light on

a uh, a difficult topic.

So, thanks for an excellent job Dee,

and uh, I just wanted to remind all of

you that um, we will be posting a

recording and the slides, and the website

is uh, DisabilityDisasterAccess.org,

I know that's a mouthful, but it's also

in chat, DisabilityDisasterAccess.org.

Um, our next topic will be in May.

May 14th, um, and it will be about

COVID-19 and what's happening with

our peers internationally.

And what's going on from them, and them

from us.

And that will be done by Marcie Roth,

the Executive Director of WID.

And our next status call where we do

briefings and situational awareness,

will be on the 4th Thursday of this month.

And uh, if you want to sign up for these

notices, how you do that was in the

invitation for this uh, session.

So, again, Dee, thanks a lot.

And thanks to all of you for joining.

>> DEE GRIMM: Thanks for having me, June.

>> JUNE KAILES: Back over to you, Megan.

>> MEGAN COWDELL: Yeah, that's everything.

Thank you guys for joining, uh, and we

will have the archive up shortly.

Uh, stay safe and have a good rest of

your day.