Now or Never: Long-Term Care Strategy is a podcast for all those seeking answers and solutions in the long-term care space. Too often we don’t fully understand the necessity of care until it’s too late. This podcast is designed to create solutions, start conversations and bring awareness to the industry that will inevitably impact all Americans.
Margaret Morganroth Gullett: and
some of the states care about
residents and some of them don't
care at all. Many states could
have gotten more Medicaid money
earlier from the Affordable Care
Act. They didn't even ask for
it. They just don't care.
Caroline Moore: Welcome to Now
or Never Long-Term Care Strategy
with Kosta Yepifantsev a podcast
for all those seeking answers
and solutions in the long term
care space. This podcast is
designed to create resources,
start conversations and bring
awareness to the industry that
will inevitably impact all
Americans. Here's your host
Kosta Yepifantsev.
Kosta Yepifantsev: Hey, y'all.
This is Costa and today I'm here
with my guest Margaret Morgan
Roth, Colette resident scholar
at the Women's Studies Research
Center for Brandeis University,
and author, essayist, and
activist. Her contributions to
the field of cultural studies of
age include five books, the
latest of which is ending
ageism, or how not to shoot old
people. Today, we're talking
about how to prevent the next
American elder side. For our
audience unfamiliar with this
topic, will you start by sharing
your perspective on the term
elder side and the importance of
addressing this issue?
Margaret Morganroth Gullette: US
nursing home care is
ineffective, inefficient.
inequitable fragment is an
unsustainable and that was the
conclusion of a very thorough
investigator before from the
prestigious national academy of
science, engineering and
medicine. The acronym is NASA,
here under government auspices,
has also proven to be sometimes
corrupt. And we feel and I
believe that what happened in
March of 2020, was that the
government abandoned the 1.4
million people who were in
nursing facility around the
United States in 14 15,000, or
500. there abouts on nursing
facilities, because the meaning
of the elders side is it. It's
not. It's an unfamiliar word. It
used to mean something like
Lizzie Fortin took an axe hit
her mother's wood wax in Paris
died. What I think we need a
different term. There are some
other terms floating around
there a little more there are
there, jet Termiticides. And
aside, I like I'll decide I
think it's nouns American, we
know what elders are. We know
what suicide is. We know what
side me I have a million US
debt. Over 195,000 residents in
nursing homes across the nation
died of quote, that's almost one
in five American. So the total
residents in 2019, we're about a
half of 1%. Of that. That's just
an extraordinary content,
condensation of debt in one in
one place, and one place that
the government is responsible
for. And I argue in the next
book, which is called American l
decide that they died
prematurely. They died
unnecessarily. And they died in
the very locales where they
ought to have been fit checked
in. And I believe that it was
indifference rooted in ageism
and ableism. And a few other
prejudices that I am going to
distort. That indifference
rooted in ageism and ableism.
killed these people before their
time. And I think the reason is
why they were under protected is
not hard. I'm going to read a
quote another quote,
undervaluing lives tend to the
left otter, check, flee, and the
more exposed to rip than more
highly valued and lives the
young more than the old. The
rich word in the for whites more
than blacks Americans more than
foreigners and relatives more
than strangers. The resonance
had undervalues lives and they
were under protected. And the
reason is what I call compound
ageism. As if it's just age,
you're not getting all the
reason they would be under
protected. You're not just old.
You're also some of them. less
able, about 70% of them are
female. They are all of though
income in fact, we're talking
about indigent people, most
cases. They are small people.
There are some of them are
cognitively impaired. Small
means they don't look like they
could protect themselves and in
fact, they are defenseless. And
I think the word for that for
them as a group, nothing else in
common it. I mean, they're all
races. They're mostly white, but
there are plenty of other races,
there are bolo sexualities,
they're of all levels as ability
there of all levels of cognitive
ability. They are a
heterogeneous group. But if you
want to say one thing about
them, it is that they are
Kosta Yepifantsev: helping.
You've written that the deaths
of residence and long term care
facilities during the pandemic,
were not an inevitable
biological catastrophe. Would
you expand on the conditions and
neglect that led to this
tragedy? And the way that you
put it is, I quote, abandonment,
Margaret Morganroth Gullette: we
have to worry the stereotype
about them. And I think the
stereotype is that people who
move into these quarters have
nothing much to live for. You
people wouldn't want to move in
themselves. So of course, why
would these people be there?
They're just waiting to die. And
it can't be held. Old people
die, that people die. There
can't be felt. I think what per
stereotype is, right, it's
futile to help them. It's just
futile. Now, that certainly
wasn't true in 2020. In the
spring of 2020, there were are
one example first, Rosa Laurel
is nursing home in Baltimore,
run by black minister in a black
neighborhood, very poor, very
indigent, very many people
disabled. So on he in all 2020
He had no cases and no depth.
Kosta Yepifantsev: That's
incredible.
Margaret Morganroth Gullette: It
is an it should not be. In fact,
there were 437 homes out of this
gene 1400. Or the other 15,000.
There were 437 Read in that
year, had no deaths. Now, so how
do you explain that? Well, one
thing Reverend DeWitt got, he
got interviewed, and he was
marvelous in his interview, and
they said, How did you know what
to do? He said, Well, as soon as
President Trump said it was
going to be over immediately, I
blocked down. Wise Man, and
right when locked down, now, he
didn't just block them in, he
got a cook for better food. He
made sure what the nursing aides
could stay there at lunchtime.
So they didn't have to go out.
He was paying them in such a way
that they didn't have to take
another job. He got more TV sets
his he thought my deeper there'd
be bored. And he got an
activities director already
pumped up the role of the
activities director, and this is
crucial. We already had an
infection preventionist on
staff, you had a nurse who knew
how to keep? Well, it would have
been the flu and any previous
year, and other you know, viral
infections, it could have been
SARS in the previous decade. He
knew how she knew they knew how
to keep the residents safe. So
my argument is, all the
residents grew up and protected.
Every single one of them. They
didn't, they could have had
resources focused on them. And
that's my point,
Kosta Yepifantsev: what a lot of
people don't know, unless
they're obviously working in the
industry, there was a lot of
funding that came about in 2020
with the Cares Act. And then
President Biden also had a
similar bipartisan legislation
when he first got into office, I
can't quite remember the name.
But there was funding designed
to be given to nursing
facilities and to hospitals and
to various other Medicaid and
Medicare recipients in terms of
like providers, and so not and
obviously at PPP and all these
other buckets of money. And we
did the exact same thing, like
you know, we increased our
infectious infectious disease
protocols. We increased our
overtime thresholds so that we
could mitigate the changing of
shifts and so you know, if you
had like one person taken care
of one individual then that was
the person that would be taken
care of that specific
individual. We wouldn't be
changing out site locations with
with staff. All of that was
possible because of the
additional funding that we
received from the federal and
state governments. So, if this
nursing home, let's just say
that they already had all these
things in place, but they just
excelled even more at preventing
the spread of COVID-19 and the
other 400 homes. Were why didn't
the other nursing facilities use
the money to follow suit? When
obviously, that was the intent
of the funds that they received
from the federal government, in
your opinion,
Margaret Morganroth Gullet: when
they most MIDI to be saved, was
March, April, May, and June. So
that's what a clusters began,
began dying in terrible
clusters. And it turns out that
they were 30% of the day 40% of
the debt 50% of that debt. In
some states. They were in
Massachusetts, at one point they
were 66% of the debt. So I think
what I want to look at first,
what I think people have to look
at to get the narrative
straight, is why the federal
government did not then provide
or that or the straits to that
matter, but I think the federal
government is guilty as they
what Trump did was, he said, we
don't have PPE, it's the stock
coil has been, you know, and I
missed his true, the stock coil
had been allowed to window, and
it had not been refilled by any
president. So it's not all on
Trump, the previous presidents
had also neglected the
stockpile, otherwise, he could
have gone out right, then with
the nursing home there would
have had to prioritize the
nursing out instead of the
hospitals. And that's not what
happened in many states,
including in my stay, the
hospitals got prioritize. Now,
that was that was wrong. And I
mean, I'm, I'm I say this on the
basis of I've been listened to
many with farmers who know what
they're talking about. It was
recorded have saved the
hospitals, right, keeping people
from nursing homes out safe in
their own spaces, and are some,
you know, all right. I mean, I
just want to say there were 300
greenhouse facility that did
very, very well, the greenhouse
facility. So if he's more
places, and they're they have
single occupancy rooms and Beth.
Oh, wow, that's extremely
important. And it will be
extremely important in the
future, if we can get it. And in
the greenhouse facilities, I'm
just gonna read this, the median
death rate per 100 residents was
so low, it was statistically
zero. And in unionized
workplaces, the mortality rate
was lower than in those without
worker union. And nonprofits,
which are often run by religious
groups either lose lean threads,
Catholics, Quakers, they also
get much better, that are the
ones that when you finger or the
for profits 70 If we sat down
nursing homes are owned by
whatnot, it's and the it used to
be that they were bought up by
hedge funds. And Hitchens, care
about the bottom line, they
don't care about the people, the
resident. I like to call them
residents. I mean, they're
there. They're not there to die.
They'd be in a hospice, if they
were there to die. There, there
is a new living space and see
new comer get Linux fade. And if
it's done right, it can be very
pleasant. And it should be will
be very pleasant. People should
expect the minimum level of good
service, good health. I mean, we
know what the ideals are
everybody in the business do you
call it the industry but
everybody in the business knows
what Big O 's are. So aren't
think there was a lot of
negligence at this is the answer
to your original question. I
think that there was negligence
that they didn't. They didn't
hire. They didn't do work.
Apparently you did. They didn't
hire more people. Many of them
did not have sickly they don't
have paid sick leave. Many of
the A's in in these prices are
so underpaid. They have to work
two and three jobs. They're part
time they don't keep Besut at
work two jobs. They carry COVID
from one place to the other. I
mean, they could have been
protected themselves. I'm not
blaming the A's. I'm blaming the
the the operators, the
management, that the people who
just said, Well, they're I'm not
sure what they said to
themselves. I mean, it's hard to
believe. I mean, we know what
they say now, they blame the A.
Kosta Yepifantsev: Well, and I'd
say, I would say that most
likely, yeah, I'd say that most
likely it was probably profit
over people. And that's the that
was kind of the, if you look
back now hindsight being 2020,
that's the only way to explain
it. And I also I have to ask, do
the issues permeating facilities
and ability to act and protect
their residents in 2020 and
prior, still persists today? But
also, have we improved at all?
Margaret Morganroth Gulle: There
are people there are centenarian
in nursing home, and there was
one centenarian Her name is
Sophia gotoh. She survived the
flu of 2018 2019. And she
survived COVID These are people
with resilient, you're not,
they're not biologically
helpful, right sort of be
eiendom, that particular issue,
then, so they didn't need to
died. They were not all frail
and susceptible, and most did
not die. And that is an
important statistic for people
to remember. Hold on. If if you
are out there, if you think that
they're just waiting to die, let
him tell you, over 80% of them
got COVID got COVID and did not
die. So amazing. They're there.
They're more vulnerable than
some of us in the general
population. That's certainly
true. So but now to get back to
your your other question. You
want to talk about whether there
has been improvement?
Kosta Yepifantsev: Well, and I
also want to know if the if the
problem persists today as well.
Margaret Morganroth Gullett: Oh,
here? Oh, yes. I think all the
problems all the palace persist.
I mean. In fact, in some ways,
they may be worse. I mean, one
of the odd things that happened
in the in the spring of 2020. Is
and in some places, there'll be
better, no. But what happened in
the spring of 2020, you're
seeing all these clusters of
deaths, right? So you'd say to
yourself, Well, Mike, God, let's
get out of this. Because this is
a terrible business. It's gonna
have a terrible reputation. But
in fact, the large companies and
some hedge funds started buying
up nursing homes. That's an
almost incredible fact. But it's
why was it huge. It was a real
estate. Well, they were going
cheap, selling but selling
cheap, and they were buying low.
And they thought, Look,
particularly if these places had
been well gone. They had a
reputation of people that were
relatively safe. It is an
industry as as you have called
it. So but that that doesn't
answer the larger question of
where it's better and where it
is. I mean, I think one of the
problems with the business is
that the government set it up
wrong. It's a system that is a
hybrid system. It's federally
it's one out of a federal
agency, the Centers for Medicare
and Medicaid, but it's run by
the states, he states and
Washington's. And some of the
states care about residents and
some of them don't care at all.
I mean, they could have gotten
many states could have gotten
more Medicaid money earlier.
From the Affordable Care Act.
They didn't even ask for it.
They just don't care. And I
think near now, you have to
think about racism and and
xenophobia, you have to say
dates it had foreigners or if it
were in the legislature, a lot
of races of they are going to
care less about caring well for
these people. And it's not and
also I guess I you have to study
when you work at a legislature,
and it hasn't done any reform in
2022. And and many of them did
no reforms for included shit.
You work at the delays and you
the way things Dutch Shell, and
then you will get half ordered
measures that deep vote room and
you say to yourself, we're so
clogged news, walking into the
air of those legislators. And it
and it is certainly true that
the lobbyists ran that there's a
there's a trade association When
it has lobbyists, seat lobbies,
Congress, he lobbies of the
states, it's really extremely
wealthy, and Ray, how, and they,
and they pour mat all the time.
They don't admit that they have
ways of hiding the money that
they're getting from the
government. So it could be that
they're paying the CEOs, a lot
of different entities and
different entities get different
amounts of money. And so if very
few don't look at their, if you
don't order it, then you don't
know what they do it at all. But
when you do it, then you often
find that they have these ways
of hiding pockets of money. And,
and so they have, and then they
go to the legislature and they
pour them out. They say, We just
need more money. And I think
that some of them may need help
from the midfoot. I think what
you want to do is audit them now
in Massachusetts, that's my home
state. Now, I know more about
Massachusetts in about a lot of
other places. The Department of
Public Health is not ordered yet
in recent years.
Kosta Yepifantsev: But so if you
know that the conditions are
bad, and that it's pretty much
common knowledge that the
conditions and nursing
facilities are close to
horrendous. Obviously, there was
400 some odd facilities that
maybe didn't experience deaths.
And let's give it let's give him
the benefit of the doubt and say
that there was a couple of 1000
that did the right thing. But
ultimately, there's I don't
know, fit, what 15,000 nursing
homes, I think I think I saw you
write down or 13,000 right
around there. So I'd say 80% 75%
are not doing the right thing.
Now we know that's the problem.
In Massachusetts, your home
state, have conditions improved
since the 2020 pandemic?
Margaret Morganroth Gulle: Well,
let me let me give one example
of something that the government
did right here. Very sad. We're
going to have to one store
though, will mandate who to her
will very well almost never get
a man. I mean, he will get the
federal government, they in
under Trump, they strongly
recommended infection control do
I recommend is not a mandate,
you know, recommending that you
vaccinate your age is a
recommendation. It's not a
mandate. But in Massachusetts,
but government said we are going
to go for to a room. That's not
ideal. Everybody knows that the
ideal is one to a room with
their own bathroom. And that
would have prevented a lot of
infection. Because if one person
got sick, their roommate got
sick. I mean, that was sick.
Look, I mean, they could have
shields between in some places,
they could have shields to
cumulate. Okay, so Massachusetts
looks like it's doing right. And
in fact, most of the nursing
homes are going along with it.
And they can do that, in part,
because there are empty beds.
And one of the reasons they're
empty fence is because people
are avoiding nursing homes. They
just don't want to go and they
are trying to find any kind of
alternative. And some of the
alternatives are not good. I
mean, we can't, you can't move
back into a house when you've
sold it. You know, we can't move
in with your kids. If everybody
is working on their young
children. And you're not
capable, it's carried to the
unsheltered I mean, but at any
rate, most of the nursing homes
did act correctly. But about 26
of them sued the state and said,
Nope, we can't do it. So is this
going to the courts? Now? i I
hope that the court will say it
says private or public health
mandate. It's crucial for human
dignity and hell. That this,
that this be honored. So that's
one way we get it right. The new
governor who's coming every she
has shown some interest in
another she just got an order a
lid there she beat a few days
ago, actually. She's shown some
interest in nursing homes.
She's, she's loving to heavy,
heavier fines. But everybody
believes that the fines are just
a tap on the wrist, but you're
not really charging them What
name should Ellen charge them
when they have abused a patient
or filled a patient with
neglect? So I think there's a
lot of work to be done with the
by the Attorney General and by
the governor. And, you know,
we're just I belong to a
wonderful group. It's called the
dignity Alliance messages. And
they got started immediately in
2020, when I became so agitated
about what was going on in the
news, and the deaths were just
rising. All these people who had
been in reform movements around
the state for 20 and 30 years,
and they were anti ages, they
were pro aging activist, they
were disability people. They
they came in, there were
lawyers, and doctors and nurses,
and people who would have been
in Alzheimer's units, and they
know what they're talking about.
And I love them. They're just
and they sponsored bills in the
legislature. So if you want to
know where we are in
Massachusetts now is we're
waiting for the next legislator.
For to do it right with roll
ring, a new governor who may,
you know, lashed the whip a
little bit more over the
legislature. With, we may get a
lot more. I mean, there are
agencies, there are foods
organizations all over the
country, now, who are very
exercised, and in some of them
are the children of the last
Western nuts. And Bray, never
forget, they've never gone. They
were locked out. They didn't see
if their parents are there. That
is the sisters, nieces and
nephews. They didn't even die.
They didn't hold their hands.
They're just the suffering was
it, she waited, and they are not
wanting to forget. Now the
question is whether we can bring
these people who will experience
this suffering and know the
urgency of these. It's total
transformation that is needed
deal. If you can bring them
together with the legislators
around the country. That's
what's needed.
Kosta Yepifantsev: You know, I
think as we're talking about
transformational change with
regards to the nursing,
essentially the nursing home
business, and I know a lot of it
is underpinned by federal and
state policy. The reason why I
don't have a lot of confidence
in it is because, you know, if
we can't pass gun control, after
however many school shootings,
how in the world are we can get
legislatures mobilized to pass a
Nursing Home Reform Act like
they did in the 80s.
Margaret Morganroth Gullett: You
know, we don't have a gun lobby.
I mean, I think you can
discredit the lobbies bid in, in
the States, and then at the
federal. I made, I believe it is
a powerful lobby, depending upon
who runs Health and Human
Services in Washington, and who
is in the state legislators,
legislatures, and governors, I
think, certainly with this, with
this data, at least, this
mortality data, and this level
of suffering, and this isn't
nearly no more people who are
relatives and want this to
happen. I think something may
happen. But there is something
else is another direction we
should go in Costa well, that
people don't want to be in
nursing homes. And we need to
and realize Massachusetts
recognizes that
deinstitutionalization is one of
the ways that we could go, we
could have far fewer than once
weren't 1 million people. I
mean, estimates vary, but
certainly a third to a half of
them could be living in, in
assisted housing. Sure. And
there isn't a program, there's a
government program, and we got
some of it and Massachusetts and
we may get it again. And it's
called Money Follows the Person.
And it means if you have that
would like know something about
it. That if you are in bulging
and and partially disabled or
disabled, or have cognitive
impairments, or have mental
impairments, there are many ways
that you can use the money now.
If you have to find housing,
correct that that I mean,
somebody has to help you find
housing, and my mom was in for a
while, actually when Renee was
functioning here, it helps
people find the housing, but I
think we need all this kind of
housing specialized housing for
this population. And that is a
whole other, you know, hobble
ematic, in which he get
developers involved. Right and
Kosta Yepifantsev: right. Well,
yeah, so it's a three pronged
problem with regards to MFP. And
money falls a person. Number
one, it's the affordable housing
problem number two states that
didn't expand Medicaid. There's,
you know, there's very small
percentage of people who qualify
for that program. But the third
one, and I think the one that's
probably the most significant is
the fact that Money Follows the
Person is a Medicaid specific
program, and Medicare, which is
available to everyone over the
age of 65, does not participate
to the same capacity. And at the
same time, because we're trying
to, I just don't want to pivot
just a little bit backwards,
because we're trying to affect
50 different state legislatures.
When whenever we talk about
Medicaid, we could just very
simply have Medicare pay for
long term care. And then that's
there's actual federal
governance over what long term
care looks like. Because when
you're trying to create a
standard of practice around 50
different states and their own
practices, it's very hard to
create benchmarks, measurable
benchmarks for quality of care
outcomes. But the federal
government doesn't want to pay
for long term care, or they
would have by now, so well.
Margaret Morganroth Gullette: It
Yes. Is our it's not. It's not
impossible. I mean, I hear
everything you're saying. And it
came up. As a matter of fact, in
the Affordable Care Act, it was
part of the Affordable Care Act,
and then just have to explain to
people who don't know anything
about the meetings, programs,
that they're there, you pay into
them over the course of your
life, or, you know, you start
paying into them. Re are a bit
like Social Security and you've
paid your quarters and you get
Social Security at a certain
point in your life. Well, long
term care insurance and run like
that. And it was in the
Affordable Care Act. But it was
this is under Obama. He had a
Republican. Yeah, the Republican
legislature, Congress didn't
want to do it. They said, it
wouldn't pay for itself. But it
would have paid for itself. If
you don't have best immediately,
it would eventually pay for
itself. And if you have not had
theirs, it could still happen.
It couldn't happen. Now, it
can't happen in 2023. But we
have an election coming up.
Sure. And what I'm hoping is
that these agency, these
organizations, and this really
isn't a movement yet. But there
could be. And it couldn't be a
movement for more affordable
care coming out of the federal
government. And it wouldn't
being money that you could
spend, it would be your money
once you are invested. Well,
what I would like to tell you
about it, you've done this
already, but your readers, your
viewers don't probably,
Washington State has it. Yeah,
it's gonna depart this spring.
And it's going to be very
interesting. It will take three
years to vest. It won't give you
and I know the guy who runs it.
So if you haven't had him on,
we'd love to have him on. I
think I'll give him your name. I
mean, I'll give you his name,
and you could get in touch with
him. It will be interesting to
see it starts, that it's people
start putting their money in
this spring. And so in the you
know, it will be three years
we've invested a whole lot of
money.
Kosta Yepifantsev: It's a 2%
payroll tax, if I'm not
mistaken, right, a 2% annual tax
with a business match or maybe a
1% payroll tax and a 1% match.
It's lower than that.
Margaret Morganroth Gullette: I
think it's worth 67 cents leaps
in my mind. Were 100 Would it
be? But I I'm not sure Sorry.
Okay, so no, so what
Kosta Yepifantsev: impact what
impact did the lack of
representation in the voices and
experiences of residents have on
the media coverage of elder side
and subsequently, our collective
perspective?
Margaret Morganroth Gullett: Oh,
the media was pretty bad. I had,
I had an intern and she was
reading a Google word that I had
set up for resident Nursing
Homes interviews. So I was
trying to get quotations from
the people themselves, who were
either, you know, who are
suffering and enduring or who
felt safe. It didn't matter to
me. I just wanted to hear their
voices. I wanted them to be
represented. And she read 1500
articles, and I read a couple of
100 more. And viewers. Now many
of those articles quoting
resident, well, could get 10,
one of you 20 Wow. Okay, so I'm
grateful for all those four
years for doing a very good job.
And I use those. I use those
interviews, as many of them as I
could get into the book in
American elders side, because
they're wonderfully rich
interviews. I mean, they're
white people with people like
Sylvia goto, who survive, and
others survive. And well, I
mean, they had just survived in
failure. They couldn't have been
interviewed. But they're just,
they're just a marvelous set of
people. So I think I think it's
sad that they weren't considered
to be witnesses, but it tested
reality to be able to give
authentic testament, because
when they were able to do it,
they did it. And nobody sort of
asking them, I mean, that's just
the simplest question in the
world, sort of asking them, but
you can't ask them. So you blame
the media. Okay, fine. I mean,
there is waste. We're
journalists out there who are
interested in old people. But
there are fewer of them than
there used to be. They're just
the way, you know, in papers and
just appearing there some TV
shows were very good. Actually.
That's where I got to see a lot
of residents on when they were
interviewed on, you know, little
TV shows in little Podunk cities
and towns, they seem to be able
to find them. So not many of
them but still want to evolve.
Kosta Yepifantsev: But what
about like the major syndicated
networks, do they, you know,
they obviously know what people
will and won't watch. So I guess
the question is, is, aside from
sensationalizing the deaths that
happened, and you know, the in
Kirkland and Washington state,
you know, and obviously, the
significance around the the
deaths that occurred, and in New
York City, nursing and New York
State's nursing homes, no one
really went like you were saying
and talk to the residents to
hear their stories, as they are
essentially navigating the front
lines of a major pandemic they
did with hospitals, but long
term care facilities are like,
and you said it perfectly in the
article, you said they're
warehouses for old people. And I
paraphrase that, of course, but
the term that I want to
extrapolate from that is
warehousing, you know, out of
sight out of mind, it's it's
quite, I
Margaret Morganroth Gull: think,
I think your own heat on
something else there, I would
like to emphasize, and that is,
the media thinks they know what
people want to hear about. And I
think, and that's why the
mortality statistics were so
sensationalized, they were
counted. They weren't, you do
it. But what we have to look at
the American populace as I don't
want to say guilty, although in
some sense, you have to yet. I
mean, people were, you have to
think back to 2020. How
terrifying a time it would how
often close people got. If I
think they would have liked to
hear more voices of us, I joke,
I wouldn't say that they were
indifferent to that degree. But
I think what you have to work at
is inference before COVID. And
now, and I think what we are
facing now is another fall into
they're not really human.
Kosta Yepifantsev: I mean, do
you think we still have that
sentiment?
Margaret Morganroth Gulle: Well,
I said, I use the word utility.
I think what we need to find
those of us who are the
reformers and continue what we
need to fight is the idea that
it's Utah to rescue these
indigent, old women. I mean, I
think it was easy for Trump to
do it if he's in a beleaguered
soul. I mean, most attached to
the culture view is all near the
hero, he just couldn't imagine
rescuing those people. Now, so.
So, in part, we need to overcome
this compound ageism, in our own
head. We got we need the
imagination to recognize that
they are human, and all the
things that I said, we will be
there. I mean, that's the other
argument that people use all the
time. You have to think, and
it's very hard to say thank you
will be old or needy, right?
Maybe it's easier to think that
you'll be old, but not that he
will be older knee and yet,
people over 65 are going to be
about 3% of the population. And
about 70% of them at that age is
going to need long term care of
some form. It may be in the
family, it may be money follows
a perfect person that may have
to be institutionalized care,
that we can't forget any of
those options. We have. And many
people have those 70% and we'll
need something won't be able to
afford it. Whatever it is,
though, I think we have you have
a population out there that's
watching your show. And and
maybe there's not much else.
Kosta Yepifantsev: It's hard. It
is hard to find topics and shows
specific to long term care, even
though it's like you were just
saying 80% I'm sorry, 70% of
people over the age of 65. But
I'll tell you this, people over
the age of 75. It goes up to
80%. I know it's a negligible
statistic, but it's still 10%.
So instead of seven out of 10,
it's eight out of 10 people are
going to need access to some
form of long term care. The baby
boomer generation born between
1946 and 1964. You know, the
first person that was born in
1946, has turned 75. Now, I
mean, obviously, you know the
first person that's still alive,
has turned 75 and 2021. Which
means that we are now on this
eight out of 10. You know not
not precipice, but but process.
And so every year, more and more
people are going to need access
to the services. Now, my
question is, and this is this is
something that I pose to a lot
of people. If Medicare and
Social Security are two
mandatory line items, mandatory
spending line items in the
federal budget, and they're the
two largest line items in the
federal budget. How do you
navigate the conversation to say
there's a there is a necessity
for expanding long term care to
Medicare. It's a responsibility
and a duty when we're already
fighting about spending cuts
now, and not willing to increase
funding for those two items.
Instead, we want to do the
opposite. How do you how do you
say, Well, no, we need to spend
even more money now?
Margaret Morganroth Gullett: No?
Well, you really need at a
political scientist who has read
the experience with the kind of
rhetoric that you knew he's for
Congress, but Biden put your
sing home into the State of the
Union address. No one serious
that had never happened before.
And I think a lot of people were
heartened by that. Now, he
didn't get the Congress he
wanted. So it may be that we're
going to have another two years
in which in which it's harder to
make these arguments, all the
arguments that I have made and
that you already know what it's
not even impossible now, because
there are Republicans have
relatives to in nursing homes
and they themselves sometimes
wind up in nursing. And there
are some parts of the
legislation that Writing it
might light. I mean, you break
down to legislation, and it's,
um, you know, it's more money
for a Senate. So you know, one
person to a role, man, it's more
a government oversight and it's
more, you know, something so
binds for the industry, probably
not fire phones, you know, I
mean, but
Kosta Yepifantsev: you're saying
just the sheer size of the
population that will be
accessing Long Term Care, we'll
have to move the government in a
direction where they have to
act. No,
Margaret Morganroth Gullett: not
saying that, because I think we
fooled ourselves too long with
the idea that the pointless the
boomers, just by their weight of
their numbers, were going to
change culture. They haven't
changed culture I have my book,
actually, is it is another book
of mine that I want to mention,
because it is my latest is
actually called ending ageism.
Or how not just shoot old
people. Now, not just shouldn't
old people, it came out 90s
2017. And I didn't know that,
you know, in effect in three
years in March of 2020, we would
basically start potshots at an
old keep working. No, I think we
that boomers have not the change
age isn't there? I can't many of
them are trying. I think we
exercise or move into that. That
time of life in which they also
were thinking, Can we do
something about ageism? Because
now of course, it's also a job.
Goblin has said that work
discrimination. Man, it's not
getting better, it's getting
worse. And we were seeing that,
I think, in people over 50, who
are unable to find jobs after
they lose them in the pandemic
recession. So I think there's a
you know, I'm not, I'm not very
sanguine, but I'm not going to
lose hope about any aspect of
our culture, that where there
might be an entry point, or
transformational change.
Kosta Yepifantsev: So how can we
ensure moving forward that all
residents, regardless of race,
or socio economic status, have
access to quality care in
congregate living facilities?
Margaret Morganroth Gulle: Well,
that's everything we've talked
about. Is there, we can't
guarantee we can't guarantee it
until we have long term care
insurance, along with, you know,
Medicare for All something, in
other words, you we can't
guarantee we can't party it for
the indigent. So we certainly
can't guarantee it to the middle
class. I mean, I think one of
the things that middle class
people don't realize is the
spend down. I mean, you we go
into a nursing home, and it
turns out that Medicare, we're
paying free with for 100, diny,
103 months, or after that, if
you still need to be there, you
are burning down whatever assets
you had, and that's why people
lose their homes. And I mean, I
followed a middle class woman
who was a dear friend of my
mother's wheelchair, I had water
since by childhood. And, and
something, you know, through
abbreviate a whole complex
story. He, he said, I don't, I
never thought as of wind at the
nursing home, he had on their
own house, and she married and
she had three children. But but
so it happened. I mean, I don't,
you don't just want to scare
people into carrying that and
sell.
Kosta Yepifantsev: But I mean,
fear is an important tool was
probably one of the most
important to cultivate change. I
know that may sound dark and
cynical, but I believe that one
of the main reasons why we're
going to see significant change
in the coming years is not just
the size of the group of people
that need long term care, access
to long term care and scale. But
it's because those Gen those Gen
X populations that are having to
care for their family members,
and they're also in poorer
health than their family members
were at the time that they're in
their 50s. They're obviously
relative to to other populations
like millennials and Gen Z. They
may have they may require access
to long term care events. Sooner
than 65 depending on conditions
like obesity and diabetes and
things like that. And so I think
that telling people that they
should be scared because the
system's not set up for you to
be properly cared for, is a very
important tool to changing the
narrative and setting us up for
success instead of what what
seems to be at this point. Dire
failure?
Margaret Morganroth Gul: Gaming?
Yeah. Yeah, I mean, I think we
need all these rhetorics, I
think lean around, right, didn't
get where you need to walk up
the sensation with data, with
the caveats that I had put into
it, you know, that's that if
people did not need to die, but
I think you don't want to
convince people that you can
prevent another pandemic, and
that this was and will affect
them. Alright, so I mean, our
fit my, my book, American, Ill
decide, tries to do a whole
range of tug togas on mind in a
heart. Absolutely. Yeah. And I
think what, what I'm hoping for
is, it's called that house into
doom in German. It's the
expansion of the heart. So, in
expanding the heart, maybe you
need a little fear. But you also
need a lot of work.
Kosta Yepifantsev: Absolutely.
You're right, Margaret, what
tools can we use to address the
underlying societal attitudes
and stereotypes that lead to the
neglect and mistreatment of
older adults during the
pandemic?
Margaret Morganroth Gulle: Yeah,
well. We've said some part of
this, I think, you have to work
on your own anti ageism and your
anti ableism. And also, on your
own fascism. I mean, this is
this may be the hardest winter
in the United States, because we
are trained in an ideology of
independence. And everybody's
supposed to then have their own
two feet and put their own
bootstraps and save their own
money. And, you know, and add
six feed and save and be
independent while they walk. And
this is less and less plausible.
In the United States. I mean, we
have a capitalist system that is
bringing greater inequality. You
know how to fight classism is a
horrible other subject. Sure.
But we start, I think, defining
the problem, which a lot of
political scientists, and
religious people have done a lot
of socialists there's a good
deal more validity to socialism.
These days, young people seem to
have like bittern. They like
what they know about the one,
the project, the programs that
it inspires and would work for
and add it. And then we also
have to fight what I call
dementia ism. I think this has
two forms. One is the belief
that people in nursing homes are
all cognitively impaired or have
some kind of mental defect,
because it's not true
empirically. But there is a
range of cognitive impairments
in nursing. There's no doubt
about that. So how do you
overcome demented? Well, when
you know, the facts help a
little bit? I mean, there's a
whole raves, I mean, we need to
talk about the cottage of the
salmon on a spectrum, the way we
have learned how to talk about
autism. And I think we need to
just stick with the people we
know who will begin to can
cognitively impaired, and yes,
and be good, be good talk to
them, figure out how to talk to
them. It for a long time.
They're going to be conversable.
Probably, you know many of them
will die before they stop being
conversable I just think was a
whole world of dementia experts.
I don't like to use the word
dementia, but they use it
dementia experts, and they have
been telling us for decades, how
much better we could deal with
this population, which of course
is people all around us that hit
people in nursing home.
Kosta Yepifantsev: And I mean,
if you consider how many people
go into a long term care
facility, whether it's a nursing
home or some other type of
facility, And they're prescribed
opioids and antipsychotic meds,
and they're, and they may, and
people that aren't familiar with
their background. You know, they
don't see them daily, may
consider them to have some type
of cognitive impairment because
they're under the influence of
hard drugs. You know. And so and
I'll tell you this, the
statistics that I've come across
is that Medicaid recipients that
are elderly, so Medicaid, long
term care recipients receive
opioids in the 80% range, some
type of pain medication, that
has a high A psychoactive effect
to the pain relief. And if
you're a sitter, this those
statistics, how could you not if
you're under the influence of
such significant drugs have the
the perception that you have a
cognitive impairment, there's
all these chicken and eggs that
we're that we're not connecting
the dots on. And, and we're
building we're building an
industry with, with bad
information.
Margaret Morganroth Gu: Wherever
letting the industry get away
with a lot of bad behavior,
that's for sure. I mean, in my
view, says, we are about a
quarter of the people in nursing
homes, get anti-psychotic, that
is one of the highest statistics
in the nation. It's insane.
People young, old need anti
psychotic. And if we could get
them to institutionalize, they
would not probably get
prescribed anti psychotics to
that degree, or, you know, the
opioids that you were that you
were discarding. I mean, we
always I, we could go on and on
with the people who are guilty.
I mean, medical directors,
that's a whole layer of
responsibility that I rarely
hear anybody talking about.
Every nursing home is supposed
to have a Medical Directive. But
in many claims, that medical
director is going to be
overseeing, who knows how many
residences, and how many
residents, it's impossible is to
understand at that level, give
that percent and not realize
that things are going to go
wrong in that, you know, that
there are nursing directors too.
I mean, that there, there's just
there's a lot of malfeasance in
this system. And so, when we
talk about, I mean, we're really
talking about two different
sets, I think at this particular
point, or we have been talking
about stupid things all day. One
is popular stereotypes,
misinformation, indifference,
the base, real evasion, or real
evasion, actually, the C wire
aversion, even the version with
these people, but we're also
talking about the people who are
responsible to them in the
government, and why they are not
doing their job that we've been
talking about from the beat
Kinney, in terms of the the lack
of PPE, and their lack of it,
and the lack of inspections. I
mean, it's a whole section of my
book, we haven't even touched on
it. So I think we, there there
is an awful lot to do. And I
think what we've done, and and
maybe at some length is we've
reached names, the problem. And
I think that's extremely
important, right? Well, your,
your viewers know, much more at
the end of this session than
they knew beforehand about the
carbon. Now one thing that that
is clear, they can change their
mind. Oh, they are able to
Harrison bills dog up to here,
if they cannot be institutions,
and we won't get the change that
we will indeed.
Kosta Yepifantsev: And I'll tell
you, it'll take us about an hour
to identify the problem. And so
it would take us many more hours
for the rest of the
conversation. And so maybe we'll
we'll turn this into a four or
five part discussion. But,
Margaret, we always like to end
the show with a call to action.
What steps can individuals,
families, and communities take
to advocate for better care of
elders? in long term care
facilities and beyond to prevent
the next American elder side.
Margaret Morganroth Gulle: Yeah,
well, we'd need an hour for
that, too. So I'm just gonna
say, a few, if you will think,
sure. What is it, the people who
like to be activists, there's
certainly plenty to do. You can
go to a nurse and you can bring
snacks, and you can be a visitor
to somebody. You can be
ombudsman, yep, every state has
an ombudsman program. Now, some
states, it's run better than
other states, the ombudsman is a
person who goes into a nursing
home, and is without a warning,
which is very important.
Prisoner can look at anything
can look at record, but it also
can look at, you know, commonly
and look at the kitchen and look
at the nursing station can come
in either shift change the see
how many people are actually
there, when the beginning, you
know, the owner says, X are
supposed to be there. And it's x
minus 17. Yeah, here's, I love
that program. And some of the
people I quote, or actually,
there, there are states that
have programs in nursing home,
in which you get training to be
a friend. And they have
different names, but you are
sort of like an inside observer,
and you have a credential from
the training that you have been
given, I think more states
should have that's the other
thing is, I would support
nonprofits that are doing this
work. In Massachusetts, I would
say dignity life, Massachusetts,
it just became, we It could take
about no money at all, I mean,
everything in for and volunteer,
and they have done amazing
things. But now they suddenly
need this reasonably, rather
became a fiber wincy grape,
though, so you can give them a
little money. And they'll use it
wisely. You know, they they do,
and they need a little for the
service, you know, where
national organizations, Justice
an agent is, is one of the best.
I liked them a lot, because
they're lawyers. And I think,
for many of these fights, we
must fill the ball, you must get
the attorneys general, and Bob,
let's hold justice to aging
holes, government agencies, feet
to the fire. And, and so and you
can look around in your state,
for the disability organizations
that seem to be doing good work.
I mean, Massachusetts, again, it
has a number of visa agencies,
and they are now that their
leaders are incorporated into
the beauty life as a tussocks.
So I know, when we go when we
sponsor legislation, we're not
just looking at one population,
we're looking at a lot of
overlapping population. And they
that they can be served. I mean,
if you add housing, but requires
assistance, you're adding it for
a whole bunch of population that
could benefit some that though,
so that's that's my bios
together. Who said Ah, yes, with
wherever thing that was maybe
too activist for some people.
Dog was writing a letter to the
editor. whenever something comes
up about nursing homes, and you
now know about his say, Wow, all
real, please write a letter to
the editor. You're even more
ambitious. Write an op ed to
your paper. There's a lot of
local papers. What this is
interesting, actually, this is
another hopeful flyer. The
papers really want anti ageism
material. There are really
willing to publish it. The
editors are looking for it. And
he right. People eat and with a
little knowledge and maybe drop
it to stick to a little passion.
You're probably gonna get polls.
And of course, it's all for the
good it's Porter the mission.
Caroline Moore: Thank you for
joining us on this episode of
Now or Never Long-Term Care
Strategy with Kosta Yepifantsev.
If you enjoyed listening and you
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Long-Term Care Strategy is a
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