December 26, 2024 • 42 mins
This episode was originally published on March 7, 2023. The Guest this week is Calli Ross who is a family caregiver and leader in the movement in Oregon to allow parents to be paid for providing extraordinary care to their minor children with disabilities. In the 2025 legislative session, Tensy's law, named for her son will be introduced to eliminate the lottery system that was created with SB91 which allows only about 10% of otherwise eliegible children to hire parent providers for pay. Tensy's law will allow all otherwise eligible children to pay parent providers for extraordinary care needs, the same as they would be able to pay any other direct support professional.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:11):
Welcome to Love Doesn't Pay the bills where we make
visible the often unseen experience of family caregiving. I'm Lisa Chudy.
I am a family caregiver. With me today is Callie Ross,
who is a family caregiver and a leader in the
paid parent caregiver movement in Oregon. To talk about two
bills that are proposed in the Oregon State Senate. Parents
are advocating to be eligible to work and paid positions
(00:33):
as caregivers for their children with disabilities.
Speaker 2 (00:35):
Welcome, CALLI thank you so much. Lisa.
Speaker 1 (00:39):
Would you please briefly describe your family caregiving experience.
Speaker 2 (00:45):
Absolutely.
Speaker 3 (00:46):
I have an eight year old son. His name is
Tennis and Ross. We call him Tens or Tenzi. He's
the youngest of my two kids. I also have an
older son, and he was born with a form of
primordial Dwarfism as well as one P thirty six deletion syndrome.
He caught a bad cold when he was one and
because of his pre existing conditions, he ended up intubated
(01:08):
and from that he had a rare side effect of
a progressive lung disease called bronchietis obliterance. Due to his
slow growth rate. His lung disease progressed faster than he
could outgrow it with new tissue, and at four he
ended up having a pulmonary hypertension crisis and he codd
for thirty three minutes. The lack of oxygen to his
(01:30):
brain while they were doing CPR and everything caused an
oxic brain injury. So he is now fully dependent on
us to move him, to feed him, to adjust him.
He's very, very happy little guy. He loves going to school.
He can communicate with I gaze and he is just
the light of my life. But he is a lot
(01:52):
of work. He is vent dependent and feeding tube dependent
and oxygen dependent and wheelchair dependent, so he required. There's
the full scale of caregiving, and we are in just
the suburb of Portland. However, we have not been able
to find consistent caregivers. We have one nurse and she's
currently out on leave for the next six weeks. Otherwise
(02:14):
there is nobody that has stayed with us or been
able to take care of him, and those that we
have had take care of them oftentimes do not understand
his medical needs and we end up with him being
hospitalized because of poor caretakers, not necessarily poor people, but
just you know, not well trained on the specific case.
Speaker 1 (02:37):
That sounds really intense and like quite a few times
have been really scary, and yes, yeah, and then also
such a huge level of constant responsibility.
Speaker 2 (02:54):
It has been.
Speaker 3 (02:55):
But you know, since his cardiac arrest in twenty twenty,
we were sent home with him on hospice and we
celebrate Christmas early. We got his make a wish right away.
But you know, we've been able to stabilize him. It's
been three years now since his cardiac arrest, and in
that time he's had one nurse and us as his caregivers.
(03:16):
And I think that consistency has really kept him healthy
and out of the hospital and thriving.
Speaker 1 (03:22):
It speaks to what a beautiful job you're clearly doing.
Speaker 2 (03:26):
Well. He's worth it, that's for sure.
Speaker 1 (03:28):
And he does sound charming, really.
Speaker 3 (03:32):
Fun, redheaded, spitfire with a great smile and all the
freckles in the world. So he's really Most people think
he's a girl because his hair is super long. We
keep it in the man bun, but we don't care.
It's his trademark, So yeah, makes him him.
Speaker 1 (03:47):
Why don't you say a few more words about why
is tens.
Speaker 3 (03:51):
Yeah, he's really funny. He's got a great sense of humor.
He uses his eye gaze, and his eye gaze.
Speaker 2 (03:57):
Is very literal.
Speaker 3 (03:58):
But if you take his hair down, he says something
is wrong. He was in school the other day and
he kept saying, I'm bored with his eye gaze.
Speaker 1 (04:08):
Oh that's typical all the other.
Speaker 3 (04:10):
Yeah, all the other first graders laugh. He is a huge,
huge fan of Hamilton and Greatest Showman and Mawana.
Speaker 2 (04:20):
But only those three movies, the.
Speaker 3 (04:22):
Only ones were ever allowed to watch with him, and
he makes that well known. And I don't know, he's
just he wakes up every day with a smile on
his face, excited, and I just I love that. It's
like Christmas every morning, coming in to see him first
thing in the morning. It just it makes my heart
happy that he's still here and doing as well as
(04:43):
he is.
Speaker 1 (04:44):
Would you be able to name one or a handful
of the biggest challenges in all of your experiences so well.
Speaker 3 (04:53):
Medically, he has seizures that he stops breathing and we
have to physically bag him. We we do have a
DNR in place for him. So whenever the line with
you know, nine one one, they tell us, you know,
get ready to do CPR, and we have to tell them, no,
we're not going to do that. So, you know, we
(05:14):
we've been through the Ringer. We've watched him literally die
for thirty three minutes and come back, and we were
making the decisions to take him off machines or not
given quality of life, and he opened his eyes the
first time we were getting ready to turn him off ECHMO.
He was on ECHMO for three weeks, which is heart
(05:35):
lung bypass machine, and the first time we're taking him
off there, you know it's we he opened his eyes.
And then the second time that we had really considered
taking him off life support and his ventilator, he ended
up smiling. So, you know, he just has slowly come
back to us over the last three years, and we've
seen miracles with him. So I think that's his medical challenges.
(05:59):
He does have end stage art and lung disease, so
knowing that our time with him is limited is definitely
one of the biggest challenges. And always kind of being
in fight or flight mode, ready for things to go
south is difficult. As part of the reason we've had
such hard time keeping caregivers is he's just too medically
fragile for most even nurses. Even nurses don't want to
(06:22):
be around him. He's too much for them. So, you know,
we don't have a great workforce to choose from to
begin with, and then there's just nobody available for us
that is specific enough to his needs. So I think
just finding people that are credible and will continue to
(06:45):
show up and continue to give him the care that
he needs has been one of the biggest challenges for
us at home, and just he needs twenty four to
seven hour care, so I am up almost all night
with him. My husband gets up at six am and
he usually goes to work by eleven. That's my sleeping time.
That's when I sleep, And you know that doesn't always happen.
Sometimes my husband has to go in early. And you know,
(07:07):
when before the pH and paid parent caregivers, my husband
was working two jobs so we could keep our mortgage
and our other child fed and clothed and in the
activities he wanted to do. So it was literally just
me pretty much twenty four to seven with three eight
hour shifts a week with my nurse, So it got
(07:29):
to be exhausting.
Speaker 1 (07:30):
That would be that's twenty four to seven is four
point two out ordinary jobs, the equivalent of And so
let's follow this thread and get to your advocacy for
parent paid caregivers. Let's backtrack just a little bit and
clarify that pH is the public health emergency which existed
(07:55):
due to COVID, and you're referring to the fact that
temporarily parents again we're eligible to be their children's paid caregivers. Yes,
So describe your participation in the movement to make that
permanent and where we're at with that movement.
Speaker 3 (08:12):
So I found the low organs disabled kids to have
paid parent caregivers, Paige. And you know, when you're a
medically fragile parent, here you find your community of other
medically fragile parents and you you know, get information from them.
Speaker 2 (08:29):
So it's those parents.
Speaker 3 (08:30):
That I saw were posting about it, and I joined
that page, and originally I just kind of followed along
with the rest of the group, and then it just
it felt like we were kind of at a standstill,
and there were so many questions, and I'd posted a
few things on my personal page, and I had a
friend reach out whose husband at the time was the
(08:52):
chief of staff for Senator de Canope, who is the
minority leader, and so through Brandon were actually able to
get to meet Senator Canope and that kind of really
began our whole legislative route for all of the stuff
that's come over the last year.
Speaker 1 (09:10):
Right, Senator Canope is the author of one of the
bills that's currently.
Speaker 3 (09:15):
Yes Spent six is Center Canope's bill, and it is
really been It's been written by our team and it
has our pie in the sky hopes and dreams for
this program and what it could all entail. But it
also has a heftier price tag so.
Speaker 1 (09:33):
Well, to me, I think the hefty price tag comes
from providing appropriate services to the children, regardless of whether
it's the parents or others. Because the parents, you're not asking,
as I understand it, for anything different than the non
family caregivers in terms of compensation or terms of employment.
Speaker 3 (09:56):
Absolutely, we're hoping to be treated the same as any
other direct support that works for an agency. And you know,
my mom is currently onboarding because we're getting kind of
prepared for this to end, and she's going to help
us out here, but she isn't able to you know,
care for tens alone. She needs somebody to hold her hand,
(10:17):
and you know, she can do suctioning and basic things
for him, but she if there's an emergency, see, she's
not going to be able to bag him or you know,
transfer him and start doing rescue medications and things. She
just isn't comfortable with that. And I don't blame her.
I'm not terribly comfortable with that either, So you know,
(10:37):
if I didn't have to, I wouldn't either. But you
kind of get put in these situations where you don't
have much of a choice, so you just.
Speaker 2 (10:46):
Kind of you do.
Speaker 3 (10:48):
I mean, I look back over the past couple of years,
or the past eight years really, and it's been a
slow build up of his needs getting higher and higher,
and it's I think we're fortunate in that sense. We
weren't just you know, it wasn't just all at birth
that we had all of this on our plates. That's
been you know, he was given his trade Austin at
(11:08):
a year and a half, so his feeding tube was
at three months, So it just kind of builds up
in care needs and now we're at the point where
it's like, geez, can there really be more that could
be on top of it? And I'm knocking on wood,
because yes, there probably could be. But you know, we've
got his BINGO card of physicians and just cares and
(11:31):
he's just he's worth every second of it. But we
just cannot find any help at home. And it's either
this being able to pay one of his parents or
both of his parents my husband. You know, if this
drops down to forty hours a week, and that's not
a livable income, so it would my husband would have
(11:52):
to pick up some hours too, So you know, it's
just keeping him at home versus institutionalizing him. And that's
where we run the risk is we're terrified of having
to institutionalize them in a state that doesn't have institutions.
Speaker 1 (12:07):
Right, so basically you are the option. So with pay
you can continue to do this, right.
Speaker 3 (12:17):
I can, And I mean people are always asking well,
what did you do before? And you know, before pH existed,
my son wasn't as high needs. He I was able
to do a little bit more, we were able to
have more nursing staff. And that's not the case for everybody.
Lots of parents were you know, on the brink of
homelessness or they were you know, exhausted.
Speaker 2 (12:40):
I know, I'm lucky, I have a.
Speaker 3 (12:41):
Partner and he has a fairly decent job, but even
then it wasn't enough with the rising cost of living,
so he was still working two jobs and it was
just the first five years of my son's life are
a blur of exhaustion, and they have been for the
last three years. I think the last eight years are
kind of blur to me, but happy, happy, blurry. But
(13:03):
it's we just we want caregivers. We do want them,
but at the same time, I want capable caregivers, and
I know I am the most capable.
Speaker 1 (13:15):
Well, you've proven that your son is still here versus
the predictions and expectations.
Speaker 3 (13:24):
It's been because of consistent care and excellent care, if
I mean, we absolutely cross everybody and every eye with him,
so I don't always trust. We've been in situations where
a nurse and has always been nurses. We haven't had
any other We don't employ direct service protect workers other
(13:44):
than myself because of his intense needs. But we've had
nurses that he's got a metabolic disorder, so they've given
him too much sugar when he's gone hypoglycemic and sent
him into crisis. There. We've had nurses that have bagged
him incorrect and given him pulmonary embolism that sent him
(14:05):
you know, and that almost killed him. So we've been
in situations that our home nurses have sent us to
the pick you and these are people that are trained
and should know how to care for a child. But
at the same time, when you're talking home care, there's
just a short shortage of nurses. It's usually either students
or retired nurses. It's you know, it pays much much
(14:29):
less than any kind of institution like a hospital or
long term care, and there's just there's no way that
the state can pay what institutions can. So we're stuck
with this issue of you're not always getting the top tier.
You're not getting pick you level nurses in the home,
(14:50):
which is what my son needs.
Speaker 1 (14:54):
Right and if you were, if you experienced the crisis,
the state is willing to pick up the payment for
hospital care, which to me is really wrong headed that
(15:16):
we're going to wait and let you get into crisis
instead of making sure that you can have as few
times of crisis as possible and just stay as well
as possible in a regular well.
Speaker 3 (15:27):
And they are more than willing to pay any other
person to take care of him that puts us in
these crisises, which is ironic to me. My son requires well,
he doesn't. He requires twenty four to seven, but because
the state won't pay for twenty four to seven care
for children, he receives the highest allotment of hours a month,
which is five hundred and fifty four hours.
Speaker 2 (15:50):
For his age.
Speaker 3 (15:51):
And of those hours this month, currently none are filled
by outside help. And so we're just we're drowning. Until
my nurse comes back from surgery the next month, we
are it's just myself. My mom came down to help,
and she had to come in from out of state
to help, and if we didn't have her, I wouldn't
(16:12):
be sleeping at all. My husband still has to go
to work, and we still have another child that we
have to make sure he is cared for. So we
are just we are drowning, and we are just in
a suburb of Portland where there should be a larger workforce,
but there's not. There's just no pool to choose from,
so it's and of that pool, there's nobody qualified that
(16:35):
would care for my son in the way he needs
to be cared for. And that's been shown again and again.
Speaker 1 (16:41):
Yeah, absolutely. So if you were to design your ideal services,
what would that look like.
Speaker 3 (16:50):
Oh, it'd look a lot like SB six four six, right,
And it's an inclusive built that bases everything on the
child needs assessment, or as we're now going into it,
the organeese assessment that the state has determined your child
requires above and beyond their typical peer. And I think
that any child that requires attendant care hours that has
(17:12):
been deemed so by the state should have the ability
to choose their parents as their paid caregiver. And I mean,
ideally we would have all the same rights and regulations
as any other DSP, you know, but I know that
there will be special amendments for parents. I think there's
(17:32):
going to be a special parent rate that's been thrown around,
and then you know there's going to be limited over time,
and you know, just different things that make it more
difficult to be a parent and a caregiver, things like
saying I am not allowed to take my child grocery
shopping with me while I'm on the clock. But you know,
(17:54):
it's not particular to my case. I probably wouldn't take
my child grocery shopping, just we don't really take him
out in public if we can help it.
Speaker 2 (18:02):
He's so susceptible to the cold's.
Speaker 3 (18:05):
We try to do things outdoors and things, but you know,
other children have that in their isp where they need
to be out in public and working towards a greater goal.
So I guess a better example for my son is
that I wouldn't be able to take him to soccer
games of his brothers because I would be there in
the capacity for his brother. And my older son is twelve,
(18:26):
but if he was under ten, I wouldn't be able
to take care of him while also taking care of
my son. So it's just these little things that make
it harder to be both a parent and a caregiver
when we're really just doing it all anyway.
Speaker 1 (18:43):
Sure, it's like it's meant to limit the pay while
you're still responsible for everything regardless.
Speaker 3 (18:52):
Exactly, And I think it's really important to note that,
you know, even as a parent, if I was not
if I had any other direct support worker DSP in
my home, I am not allowed to work while they're here.
I would still have to be here legally being their supervisor,
their unpaid supervisor, making sure that everything was taken care of.
Speaker 1 (19:14):
So in your ideal world, there would have to be
uh some relief care for you know, and what would
that look like.
Speaker 4 (19:28):
Yeah, I love my nurse, the one that we have,
and so obviously, I mean we would still love the
state to focus on building a workforce and outside workforce.
Speaker 3 (19:41):
I know it doesn't work for every family, but for
my family, we do want outside caregivers and we search
diligently for them. We just haven't found many that are
able to care for his high level of needs. So
I mean, just putting more money into home health in
general is a huge factor of all of this, and
(20:03):
I know that the state is very much willing to
do that, just as long as it doesn't necessarily involve
paying a parent to do the work. I think that's
you know, it's a big deal for my family. I
need I need more sleep. And my nurse is incredible.
She's been with us since before his brain injury. She's
(20:25):
you know, when we do find our people, we tend
to keep them for a very long time because we will,
you know, basically do anything. We bend over backwards. Yeah,
she you know, called in sick every week. We would
still be like, yep, that's fine, you call him sick.
However much you need, because it's still worth it when
you're here to have that relief.
Speaker 1 (20:45):
Yeah. In my family too, we we pretty much feel
like we're in a position of, well, there's a lot
of patients we're going to have and a lot we're
going to accept from the caregivers in order to get
the assistance when we can, as long as it's still
(21:07):
safe and reasonable for our daughter.
Speaker 3 (21:11):
Take every holiday off, do whatever you need. If you
need to call in, call in, if you need to
leave early, leave early.
Speaker 2 (21:18):
But it's we still want you. Oh, so we do.
Speaker 3 (21:22):
We try to lay out the red carpet, and she's wonderful.
The one nurse we have that she did just go
and get surgery and is not able to lift or
bend or do anything for six weeks. So we are
without nurse. And you know, it's the same situation at school.
Our son is not in school right now because the
school wasn't able to find somebody. So it's just there's
(21:45):
just nobody. There's nobody out there to do the work.
Speaker 2 (21:49):
Except for the parents.
Speaker 3 (21:50):
And I'm talking to that as a you know, outside
major metropolitan city, just outside I'm thirty minutes away from
downtown Portland in good traffic, So.
Speaker 1 (22:01):
We're going to take a break now. Please stay right
here and we'll be right back. Thank you for sticking around.
We continue our conversation. One of my usual questions is
what has worked for you? And I'm hearing that the
extent to which you have found non family caregivers did work.
(22:21):
It just has not been nearly enough anywhere close.
Speaker 3 (22:26):
No, we've never had full time care, and we're a
stepping stone for many of them. So you know, we'll
get a great, awesome nurse that we just adore, but
you know, we're they're waiting for their perfect hospital job
to open up, and when it does, they you know,
go on to that. So we've had it's been We've
(22:48):
just gotten so tired of being that stepping stone and
you know, having somebody for three months, my son grows
attached to them, We as a family grow attached to
them because they're here all the time, and then they
jump ship. And it's understandable. The pay is not awesome,
the benefits are horrible. So why stay in home care
when you can get paid almost twice as much being
(23:12):
in a hospital institution setting and do less work required
of you? And just I mean, these lots of these
nurses go from taking care of my son who is
has a pick you at home to then you know,
doing administration work for twice the amount of pay, less hours,
(23:33):
less stress r It's it's ridiculous to me. So that's
where we kind of stand, and we just with direct
support workers. For us, we can only hire nurses, but
direct support workers it's an even more drastic difference because
you can hire anybody off the street. It's not a
felon or the child's parents. So you get all sorts
(23:57):
coming through, and most of them, you know, we've had
we've had some that haven't been fully back unchecked by
their agency and have come in and we've found out
later that they have a criminal record, and we've had
issues that you know, one dropped my son because she
was trying to grab her cell phone. So you know,
(24:18):
we haven't had him for years because they just when
he was less care, they failed so miserably that it's
hard to even think about using any direct support professional
or direct support worker while he's this much care.
Speaker 2 (24:33):
Sure, so you know, with the pandemic and bringing.
Speaker 3 (24:40):
Bringing different diseases in and out of the house, you
just you just want to be safe with a child
that's on a ventilator.
Speaker 2 (24:46):
We're terrified of all the respiratory.
Speaker 1 (24:49):
Understandably, Yeah, yeah, very understandably. What are the next steps
that you see happening in advocacy for remaining a paid
parent provider.
Speaker 2 (25:04):
That is a good question.
Speaker 3 (25:05):
Currently one of our big focuses is on gap funding.
We are feeling fairly confident that some sort of legislation
will go through. Likely it will be SB ninety one,
the Health Services Committee.
Speaker 2 (25:19):
Bill that.
Speaker 3 (25:21):
Senator Gelzer blue And has written, and we've submitted several
amendments to that to make it a more viable option
for as many families as possible. But it's likely that
one of our bills will go through. But in that
mid term of getting it acted, there were sending families
off of a financial cliff. They have been depending on
(25:42):
this income the last two years. So a big thing
is working with ODDS to file ARPA funding for ARPA
funding to receive some of that care. One of the
cool things is that this is becoming an issue on
the federal level, so CMS Center Medicaid Services has opened
(26:02):
up to being allowed an easier process to get paid
parent caregivers. We've got the federal the National Disability Council
going ahead and saying, yes, this is something that should
be done. So states are kind of following in line.
We're unique in Oregon that we have a lot more
(26:23):
opposition to this than most other states. Most other states
are just kind of adding it to their language and
just waiver language and just going with it, whereas our
state requires legislation so.
Speaker 1 (26:37):
Right, which is very strange because Oregon has been generous
and progressive in other ways.
Speaker 3 (26:43):
It has and Oregon has deinstitutionalized the state, which is awesome,
but it's left this vacuum of you know, where do
we go, Like if we're not able to keep our
children at home.
Speaker 2 (26:54):
Because we have to work, where do we go?
Speaker 1 (26:58):
So there, but I have to work, you need income
from somewhere. I would certainly say you are working far
more than most people.
Speaker 3 (27:06):
Probably you know it does. It's for sure, you know
it is. And it's and we're asking for far less
than you know, a pick you nurse would make if
my son was in the hospital, or you know, even
just if my son was an institutional institution, the state
would cost it would cost a state substantially more money.
(27:27):
So you know, it's it's hopeful that one of these
bills will go and we're looking at we're hoping for
a quick process because CMS is so open to the idea,
but you know, it's legislation which always takes time. Our
next big date we're kind of looking at is I
(27:47):
believe April fourth, when whichever bill the Committee decides to
send will go to Ways and Means, and Ways and
Means will then budget it into the state's budget and
we'll know us how much we can.
Speaker 2 (28:01):
Afford for our bill to be passed.
Speaker 3 (28:05):
And our hope is that we have something more inclusive
than what we.
Speaker 2 (28:09):
Have right now.
Speaker 3 (28:10):
Right now, it's a very high level of care for
children that can choose their parents as their paid caregiver.
It would be nice if we could open that up
to other children, because it's not just children like my son.
You have a lot of children who are on the
autism spectrum who do not do well with people coming
in and out of their homes, who need their parents' support.
(28:34):
Get the state says, well, they qualify for these people
to come in and out of their homes, they don't
qualify for their parents.
Speaker 2 (28:40):
To be their paid caregiver.
Speaker 3 (28:42):
So you know, we've got children that require intimate cares
like my son, but you know, he's eight years old
and we still need to change his diaper and things,
and I know he would much prefer I do that
than some random person that comes in and gets known
for a week or two and leaves. So absolutely there
(29:02):
is a big argument to expand this program, and it
seems at fault with the program. If we have this
oasis of hours, this you know, highlighted hours like you.
You were qualified for five hundred and fifty four and
if any outside worker were to come, that will pay that.
(29:23):
But if you, as a parent want income from this,
we won't pay that.
Speaker 1 (29:29):
So it's just right with a vacuum of non family caregivers.
And it really is this theoretical services, this peanuts football game,
this this barrage that's really devastating when when people hear
a story like yours. I don't know how anyone could
(29:52):
hear this and not be in support of paying you,
and at the very least, in the absence of that
devoting tremendous resources to having non family if that's if
they feel strongly enough that that's what needs to happen.
Speaker 3 (30:09):
It doesn't make a lot of sense to me either,
it seems like it would and if it's just and
that's what we keep being told is is simply a
cost thing. And again, the state should have kind of
considered that if they're putting all this money into building
the workforce for these workers to come in and do
these hours, you could just let the parents do it,
(30:31):
not you know, not save yourself some money there. But
you know it's these hours exist, they are there to
be filled.
Speaker 1 (30:40):
Well, they exist theoretically in that sense of the very much.
And apparently the state did not fully expect this program
to be used, which is for me, is the bottom line,
And why are we talking about funding makes no sense
to me, because that just goes to show that this
(31:00):
program was a mirage in the first place.
Speaker 2 (31:05):
Yeah, it's it's exploit of parents.
Speaker 3 (31:07):
They know that we love our children and that we
will do anything we can for them, but we cannot
take on this burden alone.
Speaker 2 (31:15):
We just can't.
Speaker 3 (31:15):
It's it's becoming with inflation and just the cost of
living going up, it's just not a sustainable situation anymore.
And I'm I'm fearful that children like my son will
you know, we'll have to just bring them to the
er and just say please help, like I can't keep
doing this and you know, maintaining a home and what
(31:38):
do you do? Then that's that's the very very real
fear or that we'll have to move states because this
isn't something that we can keep afloat.
Speaker 1 (31:47):
So and minu and yet minus the fact of needing
income from somewhere to sustain your family, you are doing
the work, You are doing a brilliant job, and your
son is thriving, So why not just fill that piece
of some kind of income that your family can live
(32:10):
on the financial issues, you know, I can definitely personally
empathize with my family. It is two parents together. My
husband was able to work for pay, and at the
same time we were had quite a few times where
we were not sure if we were going to be
(32:31):
able to make our rent or our mortgage, and we
definitely were not stable and secure that way financially. And
now we're in our mid forties and looking at retirement
or whenever we would need care ourselves, and having had
the experiences that we did with our daughter, absence somebody
(32:56):
like myself to care for me in my old age,
that's really terrifying.
Speaker 3 (33:03):
It is, it's it's it is terrifying, and it's I mean,
I think I don't even I haven't even like put
that thought in there. But part of what we've used
as money is saving for my son, for my older son,
a trust for him, so that should we die, he
when he comes of age, he can take care of
(33:23):
his brother. I don't know if I'm more scared of
my son outliving me or if I'm more scared of
him dying young. It's a horrible position to be in,
but you know, again we're faced with this who will
take care of him as well as his parents, And
so that's kind of that's our train of thought. And
(33:45):
I mean, I think, I think people don't understand how
expensive it is to have a child like tends. You know,
a lot of the therapies that we do are out
of pocket. A lot of the things that the brain
is kind of the last known frontier, so a lot
of the things we do to help him gain skills
(34:07):
and things are covered out of pocket. We've looked into
stem cells, and I mean a wheelchair accessible van is
fifty thousand dollars used if you can find one, So
putting money towards that We bought him a two thousand
dollars potty chair so that he could have some autonomy
using the restroom. So just these little things that we've
(34:29):
been able to buy him, and the fact that we
want to use this money to get him out into
his community more to be able to do more things
with him and his brother. It's not money that I'm
going and buying prow to shoes with. It's money that
is going to my children.
Speaker 1 (34:45):
Right In any case, the DSP wages are not prod
A level wages.
Speaker 3 (34:52):
No parent is getting rich off this program, and especially
when these bills are in place and over time is
much more limited. I think that'll be a little bit
shocking for some parents. I think, well, you know, it's
just not going to be a program that anybody gets
rich off of. It's not meant to be a program
that anybody gets rich off of. Most of these families,
they're not looking for that. They're looking for a sustainable
(35:15):
income so that they can keep their child at home'
that's the cost that they want to be paid. And
to me, that's fair, and it is payment for labor
done above and beyond their typical peers.
Speaker 1 (35:31):
Absolutely, and it's a very good point too, that paying
parent caregivers also ends up costing less to the state
and the public because of the fact that parents will
frequently turn around and spend that money on their some
of their kids' needs that are still not provided by
the public programs otherwise, but our needs. In my case,
(35:55):
my daughter had keydogenic diet for epilepsy and that was
prescribed by her neurology that did work fantastically, and it
came along with a lot of extra costs because food
costs were higher and the supplements that went with it
were quite extensive. So and none of that was covered
(36:15):
by insurance.
Speaker 3 (36:16):
And well, and then getting up to keto clinic and
you know, sure, I mean to just pay for gas
to get up to keto clinic every month to go
do that dates.
Speaker 2 (36:25):
Yeah, it's little things like that.
Speaker 1 (36:28):
Yeah. And there's an example where actually see kind of
theoretical services because actually, for somebody who's on Medicaid, there
is provision for travel to medical appointments. And I found
that system so cumbersome that for the amount we were traveling,
(36:48):
it was not even worth it because of the administrative
load that was involved to access that. As a separate
piece from anything else from any other part of your life.
And I just really wish the government would fully fund
care for our children and also stop the siloing in
(37:11):
all these different programs in disparate places, because it makes
these programs really quite unusable in the end.
Speaker 3 (37:19):
Well and at the same time, while they silo the programs,
they don't look at the silo effect of how this
can help so many other places. Like you know, you
you see parents that are getting off housing assistants, and
you see parents that are getting off food stamps, and
you see parents that are utilizing less government support and
other arenas. And OHA has reported that they in Colorado
(37:42):
they have the hospitalization.
Speaker 2 (37:45):
Rates are down.
Speaker 3 (37:46):
So you know, it's just, well, there's silos for all
this care.
Speaker 2 (37:51):
There's also silos that this benefits.
Speaker 3 (37:54):
It's all a big pie that we're you know, chopping
pieces away from and it it gets so convoluted, and
it's part of the reason we don't like SB ninety
one as much and why we've submitted so many amendments
to it is because it makes the process complicated.
Speaker 2 (38:10):
It just it adds.
Speaker 3 (38:11):
More hoops and more barriers that parents have to go through.
And what we see now with the temporary program is
it's the parents that have education that have the ability
and freedom to be able to fight the system and
to figure out the system. We see a disproportionate amount
of you know, parents that have a partner, you know,
(38:34):
parents that are white, our middle class as it is,
they're the ones that are being able to use this program,
whereas parents that are BYPOC or single parents, they don't
have the time and energy to fight the system to
be able to get the threshold hours because they didn't
look through the thirty thousand paid report to find a
(38:56):
minute tweak that they can make in their child's care. Yes,
you do qualify, and their caseworkers won't point that out.
That's half of them are underqualify their jobs too. So
instead we just have this this leaking the filter that
(39:17):
is only affecting the people that well it's helpful, it's
not hitting all those that needs to hit. If we
could just open up this program to be all exclusive
for every child that requires attending care hours, we're looking
at helping a population of children across Oregon that is
consistently falling through the cracks. We're giving their parents a moment.
(39:42):
I mean, imagine trying to do this as a single parent,
and it just is impossible without an income.
Speaker 1 (39:50):
Yeah, believe me, I do imagine that frequently. And I
am one of those relatively more privileged parents. And what
I love about this group of advocates and the way
that you're working is with such consideration for those kind
(40:11):
of issues and for the people that even struggle in
some of those ways that that you may not.
Speaker 5 (40:22):
Yeah, who were fighting for the kids, those kids that
we are fighting for because it will always be disproportionate
services for the children that are underprivileged, and we can
make that so much better with SB six four six.
Speaker 1 (40:41):
Yeah, thank you. I have kept you longer than we
originally talked about.
Speaker 3 (40:47):
Yeah, I'm really grateful for the opportunity I can talk.
Speaker 2 (40:52):
I hope I gave you some information that you could
actually use.
Speaker 1 (40:54):
Absolutely, and I encourage the audience to listen to the
February hearing in the Oregon State Senate Committee for Health
and Human Services, which will be linked in the episode.
And thank you so much. Kelly. Would you like to
share where people can find you?
Speaker 2 (41:17):
Yes, you know you can always find our group. What
is it?
Speaker 3 (41:20):
We have a Facebook group called allow Oregons Disabled Kids
to have paid parent caregivers. We also have a political
action committee which is called Advocates for Disability Support, so
we are always hopeful to receive more funding through that
to help lobby the government to continue pushing these things.
And I'm happy to provide you a link to that,
(41:43):
but yeah, it's just you can. You can find me
on Facebook.
Speaker 1 (41:47):
Thank you so much and all the best to you
and your son.
Speaker 2 (41:52):
Thank you, Lisa, same to you and your daughter.
Speaker 1 (41:55):
I'm Lisa Chudy and this has loved us and't pay
the bills making family caregiving visible. If you've enjoyed the show,
please tell a friend. Then you and your friend can
both follow the show on Facebook or Twitter and participat
in conversations about caregiving. Thanks for listening.
Welcome to Love Doesn't Pay the bills where we make
visible the often unseen experience of family caregiving. I'm Lisa Chudy.
I am a family caregiver. With me today is Callie Ross,
who is a family caregiver and a leader in the
paid parent caregiver movement in Oregon. To talk about two
bills that are proposed in the Oregon State Senate. Parents
are advocating to be eligible to work and paid positions
(00:33):
as caregivers for their children with disabilities.
Speaker 2 (00:35):
Welcome, CALLI thank you so much. Lisa.
Speaker 1 (00:39):
Would you please briefly describe your family caregiving experience.
Speaker 2 (00:45):
Absolutely.
Speaker 3 (00:46):
I have an eight year old son. His name is
Tennis and Ross. We call him Tens or Tenzi. He's
the youngest of my two kids. I also have an
older son, and he was born with a form of
primordial Dwarfism as well as one P thirty six deletion syndrome.
He caught a bad cold when he was one and
because of his pre existing conditions, he ended up intubated
(01:08):
and from that he had a rare side effect of
a progressive lung disease called bronchietis obliterance. Due to his
slow growth rate. His lung disease progressed faster than he
could outgrow it with new tissue, and at four he
ended up having a pulmonary hypertension crisis and he codd
for thirty three minutes. The lack of oxygen to his
(01:30):
brain while they were doing CPR and everything caused an
oxic brain injury. So he is now fully dependent on
us to move him, to feed him, to adjust him.
He's very, very happy little guy. He loves going to school.
He can communicate with I gaze and he is just
the light of my life. But he is a lot
(01:52):
of work. He is vent dependent and feeding tube dependent
and oxygen dependent and wheelchair dependent, so he required. There's
the full scale of caregiving, and we are in just
the suburb of Portland. However, we have not been able
to find consistent caregivers. We have one nurse and she's
currently out on leave for the next six weeks. Otherwise
(02:14):
there is nobody that has stayed with us or been
able to take care of him, and those that we
have had take care of them oftentimes do not understand
his medical needs and we end up with him being
hospitalized because of poor caretakers, not necessarily poor people, but
just you know, not well trained on the specific case.
Speaker 1 (02:37):
That sounds really intense and like quite a few times
have been really scary, and yes, yeah, and then also
such a huge level of constant responsibility.
Speaker 2 (02:54):
It has been.
Speaker 3 (02:55):
But you know, since his cardiac arrest in twenty twenty,
we were sent home with him on hospice and we
celebrate Christmas early. We got his make a wish right away.
But you know, we've been able to stabilize him. It's
been three years now since his cardiac arrest, and in
that time he's had one nurse and us as his caregivers.
(03:16):
And I think that consistency has really kept him healthy
and out of the hospital and thriving.
Speaker 1 (03:22):
It speaks to what a beautiful job you're clearly doing.
Speaker 2 (03:26):
Well. He's worth it, that's for sure.
Speaker 1 (03:28):
And he does sound charming, really.
Speaker 3 (03:32):
Fun, redheaded, spitfire with a great smile and all the
freckles in the world. So he's really Most people think
he's a girl because his hair is super long. We
keep it in the man bun, but we don't care.
It's his trademark, So yeah, makes him him.
Speaker 1 (03:47):
Why don't you say a few more words about why
is tens.
Speaker 3 (03:51):
Yeah, he's really funny. He's got a great sense of humor.
He uses his eye gaze, and his eye gaze.
Speaker 2 (03:57):
Is very literal.
Speaker 3 (03:58):
But if you take his hair down, he says something
is wrong. He was in school the other day and
he kept saying, I'm bored with his eye gaze.
Speaker 1 (04:08):
Oh that's typical all the other.
Speaker 3 (04:10):
Yeah, all the other first graders laugh. He is a huge,
huge fan of Hamilton and Greatest Showman and Mawana.
Speaker 2 (04:20):
But only those three movies, the.
Speaker 3 (04:22):
Only ones were ever allowed to watch with him, and
he makes that well known. And I don't know, he's
just he wakes up every day with a smile on
his face, excited, and I just I love that. It's
like Christmas every morning, coming in to see him first
thing in the morning. It just it makes my heart
happy that he's still here and doing as well as
(04:43):
he is.
Speaker 1 (04:44):
Would you be able to name one or a handful
of the biggest challenges in all of your experiences so well.
Speaker 3 (04:53):
Medically, he has seizures that he stops breathing and we
have to physically bag him. We we do have a
DNR in place for him. So whenever the line with
you know, nine one one, they tell us, you know,
get ready to do CPR, and we have to tell them, no,
we're not going to do that. So, you know, we
(05:14):
we've been through the Ringer. We've watched him literally die
for thirty three minutes and come back, and we were
making the decisions to take him off machines or not
given quality of life, and he opened his eyes the
first time we were getting ready to turn him off ECHMO.
He was on ECHMO for three weeks, which is heart
(05:35):
lung bypass machine, and the first time we're taking him
off there, you know it's we he opened his eyes.
And then the second time that we had really considered
taking him off life support and his ventilator, he ended
up smiling. So, you know, he just has slowly come
back to us over the last three years, and we've
seen miracles with him. So I think that's his medical challenges.
(05:59):
He does have end stage art and lung disease, so
knowing that our time with him is limited is definitely
one of the biggest challenges. And always kind of being
in fight or flight mode, ready for things to go
south is difficult. As part of the reason we've had
such hard time keeping caregivers is he's just too medically
fragile for most even nurses. Even nurses don't want to
(06:22):
be around him. He's too much for them. So, you know,
we don't have a great workforce to choose from to
begin with, and then there's just nobody available for us
that is specific enough to his needs. So I think
just finding people that are credible and will continue to
(06:45):
show up and continue to give him the care that
he needs has been one of the biggest challenges for
us at home, and just he needs twenty four to
seven hour care, so I am up almost all night
with him. My husband gets up at six am and
he usually goes to work by eleven. That's my sleeping time.
That's when I sleep, And you know that doesn't always happen.
Sometimes my husband has to go in early. And you know,
(07:07):
when before the pH and paid parent caregivers, my husband
was working two jobs so we could keep our mortgage
and our other child fed and clothed and in the
activities he wanted to do. So it was literally just
me pretty much twenty four to seven with three eight
hour shifts a week with my nurse, So it got
(07:29):
to be exhausting.
Speaker 1 (07:30):
That would be that's twenty four to seven is four
point two out ordinary jobs, the equivalent of And so
let's follow this thread and get to your advocacy for
parent paid caregivers. Let's backtrack just a little bit and
clarify that pH is the public health emergency which existed
(07:55):
due to COVID, and you're referring to the fact that
temporarily parents again we're eligible to be their children's paid caregivers. Yes,
So describe your participation in the movement to make that
permanent and where we're at with that movement.
Speaker 3 (08:12):
So I found the low organs disabled kids to have
paid parent caregivers, Paige. And you know, when you're a
medically fragile parent, here you find your community of other
medically fragile parents and you you know, get information from them.
Speaker 2 (08:29):
So it's those parents.
Speaker 3 (08:30):
That I saw were posting about it, and I joined
that page, and originally I just kind of followed along
with the rest of the group, and then it just
it felt like we were kind of at a standstill,
and there were so many questions, and I'd posted a
few things on my personal page, and I had a
friend reach out whose husband at the time was the
(08:52):
chief of staff for Senator de Canope, who is the
minority leader, and so through Brandon were actually able to
get to meet Senator Canope and that kind of really
began our whole legislative route for all of the stuff
that's come over the last year.
Speaker 1 (09:10):
Right, Senator Canope is the author of one of the
bills that's currently.
Speaker 3 (09:15):
Yes Spent six is Center Canope's bill, and it is
really been It's been written by our team and it
has our pie in the sky hopes and dreams for
this program and what it could all entail. But it
also has a heftier price tag so.
Speaker 1 (09:33):
Well, to me, I think the hefty price tag comes
from providing appropriate services to the children, regardless of whether
it's the parents or others. Because the parents, you're not asking,
as I understand it, for anything different than the non
family caregivers in terms of compensation or terms of employment.
Speaker 3 (09:56):
Absolutely, we're hoping to be treated the same as any
other direct support that works for an agency. And you know,
my mom is currently onboarding because we're getting kind of
prepared for this to end, and she's going to help
us out here, but she isn't able to you know,
care for tens alone. She needs somebody to hold her hand,
(10:17):
and you know, she can do suctioning and basic things
for him, but she if there's an emergency, see, she's
not going to be able to bag him or you know,
transfer him and start doing rescue medications and things. She
just isn't comfortable with that. And I don't blame her.
I'm not terribly comfortable with that either, So you know,
(10:37):
if I didn't have to, I wouldn't either. But you
kind of get put in these situations where you don't
have much of a choice, so you just.
Speaker 2 (10:46):
Kind of you do.
Speaker 3 (10:48):
I mean, I look back over the past couple of years,
or the past eight years really, and it's been a
slow build up of his needs getting higher and higher,
and it's I think we're fortunate in that sense. We
weren't just you know, it wasn't just all at birth
that we had all of this on our plates. That's
been you know, he was given his trade Austin at
(11:08):
a year and a half, so his feeding tube was
at three months, So it just kind of builds up
in care needs and now we're at the point where
it's like, geez, can there really be more that could
be on top of it? And I'm knocking on wood,
because yes, there probably could be. But you know, we've
got his BINGO card of physicians and just cares and
(11:31):
he's just he's worth every second of it. But we
just cannot find any help at home. And it's either
this being able to pay one of his parents or
both of his parents my husband. You know, if this
drops down to forty hours a week, and that's not
a livable income, so it would my husband would have
(11:52):
to pick up some hours too, So you know, it's
just keeping him at home versus institutionalizing him. And that's
where we run the risk is we're terrified of having
to institutionalize them in a state that doesn't have institutions.
Speaker 1 (12:07):
Right, so basically you are the option. So with pay
you can continue to do this, right.
Speaker 3 (12:17):
I can, And I mean people are always asking well,
what did you do before? And you know, before pH existed,
my son wasn't as high needs. He I was able
to do a little bit more, we were able to
have more nursing staff. And that's not the case for everybody.
Lots of parents were you know, on the brink of
homelessness or they were you know, exhausted.
Speaker 2 (12:40):
I know, I'm lucky, I have a.
Speaker 3 (12:41):
Partner and he has a fairly decent job, but even
then it wasn't enough with the rising cost of living,
so he was still working two jobs and it was
just the first five years of my son's life are
a blur of exhaustion, and they have been for the
last three years. I think the last eight years are
kind of blur to me, but happy, happy, blurry. But
(13:03):
it's we just we want caregivers. We do want them,
but at the same time, I want capable caregivers, and
I know I am the most capable.
Speaker 1 (13:15):
Well, you've proven that your son is still here versus
the predictions and expectations.
Speaker 3 (13:24):
It's been because of consistent care and excellent care, if
I mean, we absolutely cross everybody and every eye with him,
so I don't always trust. We've been in situations where
a nurse and has always been nurses. We haven't had
any other We don't employ direct service protect workers other
(13:44):
than myself because of his intense needs. But we've had
nurses that he's got a metabolic disorder, so they've given
him too much sugar when he's gone hypoglycemic and sent
him into crisis. There. We've had nurses that have bagged
him incorrect and given him pulmonary embolism that sent him
(14:05):
you know, and that almost killed him. So we've been
in situations that our home nurses have sent us to
the pick you and these are people that are trained
and should know how to care for a child. But
at the same time, when you're talking home care, there's
just a short shortage of nurses. It's usually either students
or retired nurses. It's you know, it pays much much
(14:29):
less than any kind of institution like a hospital or
long term care, and there's just there's no way that
the state can pay what institutions can. So we're stuck
with this issue of you're not always getting the top tier.
You're not getting pick you level nurses in the home,
(14:50):
which is what my son needs.
Speaker 1 (14:54):
Right and if you were, if you experienced the crisis,
the state is willing to pick up the payment for
hospital care, which to me is really wrong headed that
(15:16):
we're going to wait and let you get into crisis
instead of making sure that you can have as few
times of crisis as possible and just stay as well
as possible in a regular well.
Speaker 3 (15:27):
And they are more than willing to pay any other
person to take care of him that puts us in
these crisises, which is ironic to me. My son requires well,
he doesn't. He requires twenty four to seven, but because
the state won't pay for twenty four to seven care
for children, he receives the highest allotment of hours a month,
which is five hundred and fifty four hours.
Speaker 2 (15:50):
For his age.
Speaker 3 (15:51):
And of those hours this month, currently none are filled
by outside help. And so we're just we're drowning. Until
my nurse comes back from surgery the next month, we
are it's just myself. My mom came down to help,
and she had to come in from out of state
to help, and if we didn't have her, I wouldn't
(16:12):
be sleeping at all. My husband still has to go
to work, and we still have another child that we
have to make sure he is cared for. So we
are just we are drowning, and we are just in
a suburb of Portland where there should be a larger workforce,
but there's not. There's just no pool to choose from,
so it's and of that pool, there's nobody qualified that
(16:35):
would care for my son in the way he needs
to be cared for. And that's been shown again and again.
Speaker 1 (16:41):
Yeah, absolutely. So if you were to design your ideal services,
what would that look like.
Speaker 3 (16:50):
Oh, it'd look a lot like SB six four six, right,
And it's an inclusive built that bases everything on the
child needs assessment, or as we're now going into it,
the organeese assessment that the state has determined your child
requires above and beyond their typical peer. And I think
that any child that requires attendant care hours that has
(17:12):
been deemed so by the state should have the ability
to choose their parents as their paid caregiver. And I mean,
ideally we would have all the same rights and regulations
as any other DSP, you know, but I know that
there will be special amendments for parents. I think there's
(17:32):
going to be a special parent rate that's been thrown around,
and then you know there's going to be limited over time,
and you know, just different things that make it more
difficult to be a parent and a caregiver, things like
saying I am not allowed to take my child grocery
shopping with me while I'm on the clock. But you know,
(17:54):
it's not particular to my case. I probably wouldn't take
my child grocery shopping, just we don't really take him
out in public if we can help it.
Speaker 2 (18:02):
He's so susceptible to the cold's.
Speaker 3 (18:05):
We try to do things outdoors and things, but you know,
other children have that in their isp where they need
to be out in public and working towards a greater goal.
So I guess a better example for my son is
that I wouldn't be able to take him to soccer
games of his brothers because I would be there in
the capacity for his brother. And my older son is twelve,
(18:26):
but if he was under ten, I wouldn't be able
to take care of him while also taking care of
my son. So it's just these little things that make
it harder to be both a parent and a caregiver
when we're really just doing it all anyway.
Speaker 1 (18:43):
Sure, it's like it's meant to limit the pay while
you're still responsible for everything regardless.
Speaker 3 (18:52):
Exactly, And I think it's really important to note that,
you know, even as a parent, if I was not
if I had any other direct support worker DSP in
my home, I am not allowed to work while they're here.
I would still have to be here legally being their supervisor,
their unpaid supervisor, making sure that everything was taken care of.
Speaker 1 (19:14):
So in your ideal world, there would have to be
uh some relief care for you know, and what would
that look like.
Speaker 4 (19:28):
Yeah, I love my nurse, the one that we have,
and so obviously, I mean we would still love the
state to focus on building a workforce and outside workforce.
Speaker 3 (19:41):
I know it doesn't work for every family, but for
my family, we do want outside caregivers and we search
diligently for them. We just haven't found many that are
able to care for his high level of needs. So
I mean, just putting more money into home health in
general is a huge factor of all of this, and
(20:03):
I know that the state is very much willing to
do that, just as long as it doesn't necessarily involve
paying a parent to do the work. I think that's
you know, it's a big deal for my family. I
need I need more sleep. And my nurse is incredible.
She's been with us since before his brain injury. She's
(20:25):
you know, when we do find our people, we tend
to keep them for a very long time because we will,
you know, basically do anything. We bend over backwards. Yeah,
she you know, called in sick every week. We would
still be like, yep, that's fine, you call him sick.
However much you need, because it's still worth it when
you're here to have that relief.
Speaker 1 (20:45):
Yeah. In my family too, we we pretty much feel
like we're in a position of, well, there's a lot
of patients we're going to have and a lot we're
going to accept from the caregivers in order to get
the assistance when we can, as long as it's still
(21:07):
safe and reasonable for our daughter.
Speaker 3 (21:11):
Take every holiday off, do whatever you need. If you
need to call in, call in, if you need to
leave early, leave early.
Speaker 2 (21:18):
But it's we still want you. Oh, so we do.
Speaker 3 (21:22):
We try to lay out the red carpet, and she's wonderful.
The one nurse we have that she did just go
and get surgery and is not able to lift or
bend or do anything for six weeks. So we are
without nurse. And you know, it's the same situation at school.
Our son is not in school right now because the
school wasn't able to find somebody. So it's just there's
(21:45):
just nobody. There's nobody out there to do the work.
Speaker 2 (21:49):
Except for the parents.
Speaker 3 (21:50):
And I'm talking to that as a you know, outside
major metropolitan city, just outside I'm thirty minutes away from
downtown Portland in good traffic, So.
Speaker 1 (22:01):
We're going to take a break now. Please stay right
here and we'll be right back. Thank you for sticking around.
We continue our conversation. One of my usual questions is
what has worked for you? And I'm hearing that the
extent to which you have found non family caregivers did work.
(22:21):
It just has not been nearly enough anywhere close.
Speaker 3 (22:26):
No, we've never had full time care, and we're a
stepping stone for many of them. So you know, we'll
get a great, awesome nurse that we just adore, but
you know, we're they're waiting for their perfect hospital job
to open up, and when it does, they you know,
go on to that. So we've had it's been We've
(22:48):
just gotten so tired of being that stepping stone and
you know, having somebody for three months, my son grows
attached to them, We as a family grow attached to
them because they're here all the time, and then they
jump ship. And it's understandable. The pay is not awesome,
the benefits are horrible. So why stay in home care
when you can get paid almost twice as much being
(23:12):
in a hospital institution setting and do less work required
of you? And just I mean, these lots of these
nurses go from taking care of my son who is
has a pick you at home to then you know,
doing administration work for twice the amount of pay, less hours,
(23:33):
less stress r It's it's ridiculous to me. So that's
where we kind of stand, and we just with direct
support workers. For us, we can only hire nurses, but
direct support workers it's an even more drastic difference because
you can hire anybody off the street. It's not a
felon or the child's parents. So you get all sorts
(23:57):
coming through, and most of them, you know, we've had
we've had some that haven't been fully back unchecked by
their agency and have come in and we've found out
later that they have a criminal record, and we've had
issues that you know, one dropped my son because she
was trying to grab her cell phone. So you know,
(24:18):
we haven't had him for years because they just when
he was less care, they failed so miserably that it's
hard to even think about using any direct support professional
or direct support worker while he's this much care.
Speaker 2 (24:33):
Sure, so you know, with the pandemic and bringing.
Speaker 3 (24:40):
Bringing different diseases in and out of the house, you
just you just want to be safe with a child
that's on a ventilator.
Speaker 2 (24:46):
We're terrified of all the respiratory.
Speaker 1 (24:49):
Understandably, Yeah, yeah, very understandably. What are the next steps
that you see happening in advocacy for remaining a paid
parent provider.
Speaker 2 (25:04):
That is a good question.
Speaker 3 (25:05):
Currently one of our big focuses is on gap funding.
We are feeling fairly confident that some sort of legislation
will go through. Likely it will be SB ninety one,
the Health Services Committee.
Speaker 2 (25:19):
Bill that.
Speaker 3 (25:21):
Senator Gelzer blue And has written, and we've submitted several
amendments to that to make it a more viable option
for as many families as possible. But it's likely that
one of our bills will go through. But in that
mid term of getting it acted, there were sending families
off of a financial cliff. They have been depending on
(25:42):
this income the last two years. So a big thing
is working with ODDS to file ARPA funding for ARPA
funding to receive some of that care. One of the
cool things is that this is becoming an issue on
the federal level, so CMS Center Medicaid Services has opened
(26:02):
up to being allowed an easier process to get paid
parent caregivers. We've got the federal the National Disability Council
going ahead and saying, yes, this is something that should
be done. So states are kind of following in line.
We're unique in Oregon that we have a lot more
(26:23):
opposition to this than most other states. Most other states
are just kind of adding it to their language and
just waiver language and just going with it, whereas our
state requires legislation so.
Speaker 1 (26:37):
Right, which is very strange because Oregon has been generous
and progressive in other ways.
Speaker 3 (26:43):
It has and Oregon has deinstitutionalized the state, which is awesome,
but it's left this vacuum of you know, where do
we go, Like if we're not able to keep our
children at home.
Speaker 2 (26:54):
Because we have to work, where do we go?
Speaker 1 (26:58):
So there, but I have to work, you need income
from somewhere. I would certainly say you are working far
more than most people.
Speaker 3 (27:06):
Probably you know it does. It's for sure, you know
it is. And it's and we're asking for far less
than you know, a pick you nurse would make if
my son was in the hospital, or you know, even
just if my son was an institutional institution, the state
would cost it would cost a state substantially more money.
(27:27):
So you know, it's it's hopeful that one of these
bills will go and we're looking at we're hoping for
a quick process because CMS is so open to the idea,
but you know, it's legislation which always takes time. Our
next big date we're kind of looking at is I
(27:47):
believe April fourth, when whichever bill the Committee decides to
send will go to Ways and Means, and Ways and
Means will then budget it into the state's budget and
we'll know us how much we can.
Speaker 2 (28:01):
Afford for our bill to be passed.
Speaker 3 (28:05):
And our hope is that we have something more inclusive
than what we.
Speaker 2 (28:09):
Have right now.
Speaker 3 (28:10):
Right now, it's a very high level of care for
children that can choose their parents as their paid caregiver.
It would be nice if we could open that up
to other children, because it's not just children like my son.
You have a lot of children who are on the
autism spectrum who do not do well with people coming
in and out of their homes, who need their parents' support.
(28:34):
Get the state says, well, they qualify for these people
to come in and out of their homes, they don't
qualify for their parents.
Speaker 2 (28:40):
To be their paid caregiver.
Speaker 3 (28:42):
So you know, we've got children that require intimate cares
like my son, but you know, he's eight years old
and we still need to change his diaper and things,
and I know he would much prefer I do that
than some random person that comes in and gets known
for a week or two and leaves. So absolutely there
(29:02):
is a big argument to expand this program, and it
seems at fault with the program. If we have this
oasis of hours, this you know, highlighted hours like you.
You were qualified for five hundred and fifty four and
if any outside worker were to come, that will pay that.
(29:23):
But if you, as a parent want income from this,
we won't pay that.
Speaker 1 (29:29):
So it's just right with a vacuum of non family caregivers.
And it really is this theoretical services, this peanuts football game,
this this barrage that's really devastating when when people hear
a story like yours. I don't know how anyone could
(29:52):
hear this and not be in support of paying you,
and at the very least, in the absence of that
devoting tremendous resources to having non family if that's if
they feel strongly enough that that's what needs to happen.
Speaker 3 (30:09):
It doesn't make a lot of sense to me either,
it seems like it would and if it's just and
that's what we keep being told is is simply a
cost thing. And again, the state should have kind of
considered that if they're putting all this money into building
the workforce for these workers to come in and do
these hours, you could just let the parents do it,
(30:31):
not you know, not save yourself some money there. But
you know it's these hours exist, they are there to
be filled.
Speaker 1 (30:40):
Well, they exist theoretically in that sense of the very much.
And apparently the state did not fully expect this program
to be used, which is for me, is the bottom line,
And why are we talking about funding makes no sense
to me, because that just goes to show that this
(31:00):
program was a mirage in the first place.
Speaker 2 (31:05):
Yeah, it's it's exploit of parents.
Speaker 3 (31:07):
They know that we love our children and that we
will do anything we can for them, but we cannot
take on this burden alone.
Speaker 2 (31:15):
We just can't.
Speaker 3 (31:15):
It's it's becoming with inflation and just the cost of
living going up, it's just not a sustainable situation anymore.
And I'm I'm fearful that children like my son will
you know, we'll have to just bring them to the
er and just say please help, like I can't keep
doing this and you know, maintaining a home and what
(31:38):
do you do? Then that's that's the very very real
fear or that we'll have to move states because this
isn't something that we can keep afloat.
Speaker 1 (31:47):
So and minu and yet minus the fact of needing
income from somewhere to sustain your family, you are doing
the work, You are doing a brilliant job, and your
son is thriving, So why not just fill that piece
of some kind of income that your family can live
(32:10):
on the financial issues, you know, I can definitely personally
empathize with my family. It is two parents together. My
husband was able to work for pay, and at the
same time we were had quite a few times where
we were not sure if we were going to be
(32:31):
able to make our rent or our mortgage, and we
definitely were not stable and secure that way financially. And
now we're in our mid forties and looking at retirement
or whenever we would need care ourselves, and having had
the experiences that we did with our daughter, absence somebody
(32:56):
like myself to care for me in my old age,
that's really terrifying.
Speaker 3 (33:03):
It is, it's it's it is terrifying, and it's I mean,
I think I don't even I haven't even like put
that thought in there. But part of what we've used
as money is saving for my son, for my older son,
a trust for him, so that should we die, he
when he comes of age, he can take care of
(33:23):
his brother. I don't know if I'm more scared of
my son outliving me or if I'm more scared of
him dying young. It's a horrible position to be in,
but you know, again we're faced with this who will
take care of him as well as his parents, And
so that's kind of that's our train of thought. And
(33:45):
I mean, I think, I think people don't understand how
expensive it is to have a child like tends. You know,
a lot of the therapies that we do are out
of pocket. A lot of the things that the brain
is kind of the last known frontier, so a lot
of the things we do to help him gain skills
(34:07):
and things are covered out of pocket. We've looked into
stem cells, and I mean a wheelchair accessible van is
fifty thousand dollars used if you can find one, So
putting money towards that We bought him a two thousand
dollars potty chair so that he could have some autonomy
using the restroom. So just these little things that we've
(34:29):
been able to buy him, and the fact that we
want to use this money to get him out into
his community more to be able to do more things
with him and his brother. It's not money that I'm
going and buying prow to shoes with. It's money that
is going to my children.
Speaker 1 (34:45):
Right In any case, the DSP wages are not prod
A level wages.
Speaker 3 (34:52):
No parent is getting rich off this program, and especially
when these bills are in place and over time is
much more limited. I think that'll be a little bit
shocking for some parents. I think, well, you know, it's
just not going to be a program that anybody gets
rich off of. It's not meant to be a program
that anybody gets rich off of. Most of these families,
they're not looking for that. They're looking for a sustainable
(35:15):
income so that they can keep their child at home'
that's the cost that they want to be paid. And
to me, that's fair, and it is payment for labor
done above and beyond their typical peers.
Speaker 1 (35:31):
Absolutely, and it's a very good point too, that paying
parent caregivers also ends up costing less to the state
and the public because of the fact that parents will
frequently turn around and spend that money on their some
of their kids' needs that are still not provided by
the public programs otherwise, but our needs. In my case,
(35:55):
my daughter had keydogenic diet for epilepsy and that was
prescribed by her neurology that did work fantastically, and it
came along with a lot of extra costs because food
costs were higher and the supplements that went with it
were quite extensive. So and none of that was covered
(36:15):
by insurance.
Speaker 3 (36:16):
And well, and then getting up to keto clinic and
you know, sure, I mean to just pay for gas
to get up to keto clinic every month to go
do that dates.
Speaker 2 (36:25):
Yeah, it's little things like that.
Speaker 1 (36:28):
Yeah. And there's an example where actually see kind of
theoretical services because actually, for somebody who's on Medicaid, there
is provision for travel to medical appointments. And I found
that system so cumbersome that for the amount we were traveling,
(36:48):
it was not even worth it because of the administrative
load that was involved to access that. As a separate
piece from anything else from any other part of your life.
And I just really wish the government would fully fund
care for our children and also stop the siloing in
(37:11):
all these different programs in disparate places, because it makes
these programs really quite unusable in the end.
Speaker 3 (37:19):
Well and at the same time, while they silo the programs,
they don't look at the silo effect of how this
can help so many other places. Like you know, you
you see parents that are getting off housing assistants, and
you see parents that are getting off food stamps, and
you see parents that are utilizing less government support and
other arenas. And OHA has reported that they in Colorado
(37:42):
they have the hospitalization.
Speaker 2 (37:45):
Rates are down.
Speaker 3 (37:46):
So you know, it's just, well, there's silos for all
this care.
Speaker 2 (37:51):
There's also silos that this benefits.
Speaker 3 (37:54):
It's all a big pie that we're you know, chopping
pieces away from and it it gets so convoluted, and
it's part of the reason we don't like SB ninety
one as much and why we've submitted so many amendments
to it is because it makes the process complicated.
Speaker 2 (38:10):
It just it adds.
Speaker 3 (38:11):
More hoops and more barriers that parents have to go through.
And what we see now with the temporary program is
it's the parents that have education that have the ability
and freedom to be able to fight the system and
to figure out the system. We see a disproportionate amount
of you know, parents that have a partner, you know,
(38:34):
parents that are white, our middle class as it is,
they're the ones that are being able to use this program,
whereas parents that are BYPOC or single parents, they don't
have the time and energy to fight the system to
be able to get the threshold hours because they didn't
look through the thirty thousand paid report to find a
(38:56):
minute tweak that they can make in their child's care. Yes,
you do qualify, and their caseworkers won't point that out.
That's half of them are underqualify their jobs too. So
instead we just have this this leaking the filter that
(39:17):
is only affecting the people that well it's helpful, it's
not hitting all those that needs to hit. If we
could just open up this program to be all exclusive
for every child that requires attending care hours, we're looking
at helping a population of children across Oregon that is
consistently falling through the cracks. We're giving their parents a moment.
(39:42):
I mean, imagine trying to do this as a single parent,
and it just is impossible without an income.
Speaker 1 (39:50):
Yeah, believe me, I do imagine that frequently. And I
am one of those relatively more privileged parents. And what
I love about this group of advocates and the way
that you're working is with such consideration for those kind
(40:11):
of issues and for the people that even struggle in
some of those ways that that you may not.
Speaker 5 (40:22):
Yeah, who were fighting for the kids, those kids that
we are fighting for because it will always be disproportionate
services for the children that are underprivileged, and we can
make that so much better with SB six four six.
Speaker 1 (40:41):
Yeah, thank you. I have kept you longer than we
originally talked about.
Speaker 3 (40:47):
Yeah, I'm really grateful for the opportunity I can talk.
Speaker 2 (40:52):
I hope I gave you some information that you could
actually use.
Speaker 1 (40:54):
Absolutely, and I encourage the audience to listen to the
February hearing in the Oregon State Senate Committee for Health
and Human Services, which will be linked in the episode.
And thank you so much. Kelly. Would you like to
share where people can find you?
Speaker 2 (41:17):
Yes, you know you can always find our group. What
is it?
Speaker 3 (41:20):
We have a Facebook group called allow Oregons Disabled Kids
to have paid parent caregivers. We also have a political
action committee which is called Advocates for Disability Support, so
we are always hopeful to receive more funding through that
to help lobby the government to continue pushing these things.
And I'm happy to provide you a link to that,
(41:43):
but yeah, it's just you can. You can find me
on Facebook.
Speaker 1 (41:47):
Thank you so much and all the best to you
and your son.
Speaker 2 (41:52):
Thank you, Lisa, same to you and your daughter.
Speaker 1 (41:55):
I'm Lisa Chudy and this has loved us and't pay
the bills making family caregiving visible. If you've enjoyed the show,
please tell a friend. Then you and your friend can
both follow the show on Facebook or Twitter and participat
in conversations about caregiving. Thanks for listening.
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